Wow this almost exactly mirrors my own ME journey - doing aaaall the wrong things, pushing through, going for test after test after test, desperately hoping to find something treatable, even if it's scary, pleeeease just let it be treatable. And then that steep steep ME/CFS learning curve, where your own knowledge quickly outstrips that of most doctors... One thing I have learned about people with ME is that we're a resourceful bunch, and we share our knowledge and experience with each other. Thanks for sharing your experiences - I look forward to checking out the rest of your videos!
Have you ever had a test that shows the swelling of the brain part o forget the name of it maybe its the meninges or something ...but the part of the brain that swells in the encephalitis part. Seems like some me but not all is the same. And can't find any doctors who even seem to acknowledge the swelling brain part of the equation they just focus on symptoms checklists and not testing. Thanks if tou can help.
You are so lucky that you have a ME/cfs service where you live. I have had this illness for 16 years. I am 32 now. And I've been in this completely along for the whole 16 years. I live in Canada and there is no help or even recognition for this illness where I live 😭
I'm so sorry. It's wrong that people with ME have been largely ignored for so long. The more I learn the more annoyed I find myself! I am lucky to have a service, it's a start at least and l think with long COVID getting attention and being so similar, this may improve things going forward. Sending much love and solidarity your way.
I suggest to check into CFS HEALTH (C.hoice F.reedom, Success ~ for ME, CFS, FM, POTS, hmj, etc ~for fatiguing and undiagnosed illnesses) They have a good recovery program - simple, sensible, solution based positive recovery program - great reminders and support and fb community. They put out a lot of free content and 2-3 minute RUclips reminders and encouragement etc, as well as able to join their pay for program. ** They have a lot of amazing recovery stories of people who couldn't get out of bed etc I was diagnosed with Severe ME ~and all the above acronyms - for past 15 years - and followed CFS Health for past decade, finally signing up at first. It takes patience, especially starting with it - took me a few months to see it making a positive difference and more hopeful. They say little by little becomes a lot - so I'm encouraged and hopeful that in about a year my life will be greatly different, possibly recovered🌈☀️😍Blessings 🙏🌟🦋✨💫
I'm also in Canada. I used to shoot have fatigue but now have constant pain. Finally got referred to a specialist after 15 years but it's still mostly video and prescriptions.
Bless your heart. The grief that comes with this condition is so incredibly tough, so much loss to deal with. I'm constantly peeling off the layers. I wish you all the best in your diagnosis and in looking after yourself ❤️
I’m so sorry you’ve been diagnosed with this dreadful condition. I was diagnosed 8 years ago & everything you’ve said is spot on. I’d say in the beginning there is a grieving period. We lose so much. I loved my career as a clinical nurse specialist, spending time with my family & friends, travelling, hobbies, a new husband… I lost everything except my husband (who is my caregiver & my biggest supporter & advocate) one by one. I grief stricken for probably 3 years before I could accept this was my life from here on. It’s a huge pill to swallow. I’ve been bed/couch/wheelchair bound for the past 5 years. I wish you well. I hope it helps some to know YOU ARE NOT ALONE. There are so many more of us out there, & at times it feels like we’ve been forgotten. I get angry at times when I see how much attention & research goes into less common ailments. Since researchers have figured out the mechanism (which you eluded to: not enough mitochondria in our cells) with enough money and demand, progress for treatment should be made! X
The worst thing is the exhaustion and utter fatigue for me. Even a little outing can cost so much to recover from and the fibro pain on top is great with every movement, So many years confined to bed. Awful.
Me too my friend. Every single thing has a cost and everything we do we must weigh up whether that cost is worthwhile. It's such a tough balancing act . What I do find though, is that it makes me grateful for the small things and I'm working hard to find the joy in those small things!
Have you got heds after 26 years this fybromyalgia last 6 years all same condition nchanged over decades and now diagnosed autism highly causation mcas
I’ve spent my life trying to balance and rest. Unfortunately, neither one seems to make much difference. You can get extra rest and feel worse, or exercise and feel worse. Horrible disease.
Omg I got my diagnosis on Sunday it has taken me out like being hit by a bus. Your thoughts are exactly the same as mine. I was being investigated for MS and nobody had ever mentioned ME... it does all make sense but I am just at but stunned. It would be easier to be diagnosed with something that people have empathy or understanding of although having a diagnosis in itself is a relief
My heart goes out to you. Yes, I was the same, ME/CFS wasn't even on my radar, l thought I had something treatable, easily fixable, this was a massive blow I was not prepared for. I think the best advice l can give is to get informed. That's what's helped me the most. Visit the ME websites, forums, etc, hear from those who live with this as that's what's helped me to learn techniques to manage it. And get some support, somewhere to rant! I now have a therapist where I am processing the anger and grief at this massive life change. I think that the first year is likely the worst, the confusion, lack of knowledge, shock, fear, it's so much! But it starts to become clearer and we did our way.....or at least that's what I'm hoping! I'm seeing glimpses of that! Things are at least clearer and more hopeful for me than there were at that first diagnosis so hang on in! Sending love
May I ask if they found swelling in your brain by a test of some kind or just a symptom checklist. I got a fibro dx and it was not fibro it was a magnesium deficiency took me years to figure out and a random lady at a store was rude enough to butt into my conversation and suggest it and it was like a light bulb turned on after taking it. But there was a video about swelling in the brain being me but no doctor has ever said there is a test.
@@FinnTheInfinncibleI had a fibro diagnosis from symptoms with bad heart arythmias and pain exhaustion etc. It was in the end a magnesium deficiency. A random lady at a store suggested it and 2 days og taking 400 mg mag stopped the heart issues and over six months other symptoms went away too the pain all over etc. It would be worth taking the rda and see if it helps. Maybe me depletes magnesium I don't know. I know my cousin has me since she had a really bad infection as a child. She's in a wheelchair now. But thank god a random lady helped me because the road the doctors were going down were going to be scary stuff burning part of my heart to stop signals and heavy medications psych meds. I know fibro is different but maybe it will be helpful. I have had so many helpful advices from people and videos compared to my doctor.
I'm so sorry Finn. The 'all in your head' brigade are really hard to deal with, even with the weight of scientific evidence there now is proving them wrong. At least the change in NICE guidelines is a big positive step, if only it hadn't had to wait 'til a time when everything's being cut back. I hope you can get the support you need, and not the 'support' you don't.
Thank you so very much for those lovely words. Yep, its hard enough managing this illness without managing the frustrations of medical professional too! The concerning thing, is if I wasnt someone who did my own research, Id be left thinking I could change my thinking and make myself better, and when that failed, Id feel so bad about myself! Well I am now going to make sure I raise awareness of this too! I am optimistic about our local ME service, ironically, COVID has meant that an external provider is running it and the webpage lists the nice guidelines which is promising! The old website for the NHS run service has old outdated info on it, the explantion video is the most patronising thing I have ever heard! Chris was sat next to me and he thought I was watching a sermon!
Finn first time I see your videos, I am sorry and I feel for you. I am a 24 years old and I developed MECFS following my Covid 19 vaccination in October 2021. I am so mad, this disease stole my life! I perfectly understand when you say you would rather had a hearth problem that ME, as I felt exactly the same when I went for my echo. And fuck all those people who say it’s functional. Sending hugs.
Ah your message is well timed as I'm having a crappy day and you just made me smile, thank you! Yes fuck the professionals in the dark ages who insist this is functional/psychological! Honestly, I'm so knof fighting my corner which l know you understand. This illness is exhausting, never mind dealing with the stigma and misinformation on top! I think I'd find my way much easier to acceptance, if l had proper support from professionals. I think we all would because half the fear and resistance I'm sure comes from the powerlessness of ME. I got excited recently at finally being referred to ME service nearby but the assessment letter I've just received is more like a mental health summary! I'm in the process of considering going private because I firmly believe that if some of my symptoms are treated, especially the high heart rate and constant palpitations, then I'm likely to at the very least gain back some energy. I plan an update rant about all this soon! Thank you so much for watching, and for your lovely comment. Welcome to the FinnFam!
@@FinnTheInfinncible I am very glad my comment made you smile. ME is a living nightmare and I think it is so outrageous that despite the incredible disability it creates, the illness is so unknown. I have some very important resources that I can share with you for treating symptoms from some of the best specialist clinics in the world, how can I contact you? I can send you these two pdfs by email if you are keen. So you may bring it to your GP or specialist to discuss for treatment, that’s what I am doing as there is no other way around. ☺️
25/04/23 Saw my GP today and after telling her all my symptoms that I've had for 2 years which have worsened dramatically, leaving me housebound. She strongly suspects M.E./CFS. Investigations have been requested and my referral to the M.E./CFS has been started. The great thing about it, is she told me that the illness is organic and was previously misunderstood but is now being taken very seriously. Infact, she just completed training on M.E. Let's hope other GPs will be as proactive.
Hello Finn and thank you for this video which I found purely by accident! I’m a gay guy they had lived with ME/CFS since my mid/late teens (I’m now in my early 40’s) I empathise with you in the struggles of acceptance and all the changes that are necessary with a diagnosis of this kind. You most definitely have a new subscriber and ally here to join you on your journey. Sending you a gentle, healing hug. Dan x
Ah Dan hello! Accidental new subscribers are the best, welcome to the FinnFam! Thank you for your lovely comment. Living with ME is such a challenge, the last few months I've been finding it easier to accept but my word it's still a shocker. I expect you have a ton of wisdom to share! I always say to folks that I'm so new to this so please, if you have any tips or advice, I'm all ears! I look forward to seeing you around the comment sections Dan!
It's so comforting to hear you talk about this. I've been recently diagnosed and it's so lonely and disheartening, it's good knowing you're not alone xx
You are definately not alone. Diagnosis really is so tough, and the first year is tough, in coming to terms with it, and learning to manage the condition. Have you been refered fr some support and to be aught pacing?
Dear Finn, even though it must be hard to believe, your body knows how to heal. If you need rest, see that rest as healing, as proactive. The grief is so awful, I know, but in my experience, it is part of adapting so that we accept our new routine
Thank you so much for your channel I have fibromyalgia and chronic fatigue syndrome. What you have been saying applies to me in so many ways !!!!! It would be nice to talk to you as I feel you understand what I'm going through and you sound strong 💪 and amazing!!!
More and more traditional treatment doesn’t apply - such as in CPTSD - A neurological brain injury. I don’t mind your rants - it’s authentic and valid that this thing has turned your life upside down. I’m just glad you’re not alone 👍👍
Is what he's describing CPTSD or relayed? His doctor seems so caring. My doctors know I have PTSD yet never connected the dots on any of my other medical problems
You've explained it all sooo well, I've had m.e for years and maybe the incessant gaslighting and my own fatigue meant I got confused by symptoms. The video explains everything I can't. Thank you. I can really hear what a fighter and can do person you are. Keep going.
Have hope,Finn.You can recover from this.I was diagnosed with ME/CFS about ten years ago.It devastated my life.I spent two years bedbound for most of the time.I could do nothing without totally crashing.Gradually,I got better.I could return to work fulltime,and my work is physically taxing..I'm a nurse.I would say I'm back to 90% health.Don't think you're stuck with this.Chances are you WILL recover.Take care.
@@FinnTheInfinncible Do you have sore severely painful muscles?I don't recall you mentioning that.That was one of the worst symptoms I had.As you said,you can't think your way out of this.The only way is pacing,as you're doing.Many people recover,and,as I said,have hope.
@@bernadettedevereux4489 my pain is mainly chronic headaches that can last days. But, when the fatigue is high or I crash, then I ache like hell and everything is heavy. I also think its aggravated an old back injury as Im having a lot of lower back and hip pain at the moment. Basically I am ready for the scrap heap lol! And yes, pacing is the way and I am getting so much better at understanding and implementing pacing!
@@FinnTheInfinncible Oh,I know those feelings well.You're not for the scrapheap yet lol.I thought my life was over,but no..and now I can live again.So will you.
Thank you for this video, Finn. I'm fortunate enough to have good health but my Mum has a chronic illness. I often find it difficult to understand how she is truly feeling, this was very enlightening for me. I'm going to show this video to my Mum in the hopes that it can open a conversation as to how I can be more understanding and supportive of her illness. Many thanks
Bless you, thank you for this lovely comment I'm so pleased this video was helpful and I really hope otbdod enable you both to talk. Sending love to you both.
Thanks for the very helpful video, Finn! At the time you recorded this, your situation is very much like mine now. I've fully embraced my fibromyalgia for over 30 years, but it's just recently that ME/CFS has raised its head as relevant to me as well. I'm having to look back and see that my "pushing through" has led to my baseline reducing, to the point that I am very close to being fully housebound now. I'm very grateful my GP supported my supposition that I easily met the criteria for ME/CFS and referred me to the state physician resource that can take it from here, but I have to wait four months for that. At least that gives me lots of time to continue to deep dive and learn and grow. Also, this gives me an outlet for my autistic hyperfixation to have a new item to focus upon. :) I'm excited to be catching up with your content from here, so I can learn from your experience and perhaps even be able to offer advice in the future, if it would be helpful.
Hello my friend. Im so glad this video was helpful. Im sorry you are struggling with these hellish conditions too. Pushing through is so easily done, because we often do not get the right advice. I did the same for too many years on account of bad advice. Luckily, Ive slowly managed to undo that and get myself to a place where im no longer n that awful crash cycle and am mostly in a stable place where I can manage time outside more often with the help of my partner and even some tme outside on my own too. So hold the faith! I have lots of vlogs on my own discoveries so far of managing my own chronic illness, and how they have evolved since I made this vlog you can find that here: ruclips.net/p/PL-xdbMjLqelJkN_Bw6mQUK-7WTbZtzPaX Ive also recently written and update blog to which might be useful:finlaygames.com/chronic-illness-acceptance-mastering-being-sick/
@@FinnTheInfinncible So glad you are past the crash cycle and have a supportive partner! Thanks for the links; I'll definitely check out your vlogs and blogs.
As a disabled person with worsening health, I've had to fight just to be listened to (let alone taken seriously) my whole adult life 😅 Especially due to my mental illnesses and being overweight, its always blamed on those when its not. Currently looking into why my joints are now constantly painful all of March, now in April, and it took me going to urgent care to get arthritis put onto the full blood test (theres a certain arthritus I can get tested via my blood test). I've always had some sort of joint and muscle pain but again, this year (especially since the start of March) its been unbarable. My GP prescribed me two weeks worth of stronger anti-inflammatory meds as ordinary paracetamol & ibuprofen did nothing other than just make my asthma worse. You rant away Finn! We're here for you mate ❤ Always good to have a Fiaffle (a Finn waffle)
fiaffle! Love it! I really appreciate your kindness thank you. I'm sorry this has been your experience, I understand as I've had similar experiences. It's so frustrating when we know ourselves and our bodies and we are not listened too! Much love to you my friend
Omg yes! The NHS just loves to blame everything on weight. I have BPD and PCOS and before I was diagnosed with BPD I had to waste time with the doctor trying to explain I wasn't just depressed because of my weight 😓
Hi Finn, i’ve just come across your page. You’re such a bright bubbly person but don’t let anybody take that away from you. Everything that you’re going through with me/Cfs is exactly what I did, but I can kindly let you know pace at your own level. Think about the spoons method. Your doctor probably doesn’t know much about the diagnosis because mind tried to put me on depression drugs which nearly killed me. But I do urgently say that if you can get a professor who deals with me/Cfs, they will put you to have B12 injections. This has saved my life. I had a person called Professor Dr Bansal, who was in Saint Hilliers hospital. He is part of the chronic pain department in the hospital. The nurses have helped so much. I’ve now been able to deal with mild to moderate me/CFS and hold a job down to Monday to Friday and it’s taken me 10 years. Sending you a hug ❤
Thank you for this lovely comment. It's been such a tough year since diagnosis. My GP didn't help at all as he turned out to have some very outdated ideas about ME/CFS. We moved home and changed doctors and luckily my new one is much better. We do have an ME service here, but all they do is teach pacing, they don't treat any of the symptoms, they just tell you to talk to the GP about managing them, which is very frustrating. Trying to find an ME specialist doctor is so hard. I am on a list to see one privately but his list is very long. I'm grateful to the ME community as I've learned so much about how to advocate for myself, how to avoid harmful treatments etc. What would we do without each other?! Thank you so much for your lovely words 💜
My heart goes out to you. You’ve explained it very well. My son got ill when he was 13 & is nearly 20. It’s heartbreaking. I couldn’t accept it at first, same as you I just wanted it to be something that was treatable. It’s so difficult when people around you don’t understand it & think you can just push through. It’s just not how it works and until people experience it or really research it then they just don’t get it. Praying you find your way to cope and still find some enjoyment in life 🙏🏻
I'm so sorry to hear this. It's such a mixed bag isn't it? Good to have a name for what's going on, but does it have to be this? I hope you have some good support
I've been a subscriber for a number of years and just recently checked out your videos again. I'm so sorry to hear that you've got me/cfs. I strongly suspect I have it too after completely crashing at the end of 2019 and barely being able to get out of bed since then. You talking about it feels validating and, dare I say it, comforting. I am still feeling like I "should be doing things" and that I'm "lazy" and I am only now, after two years, just slowing down so I can heal better. So thank you for talking about it. Lots of love from Sweden!
Bless your heart! Im sorry you may have this too, its an awful illness to manage. Guilt about rest s so ingrained into us in society, but rest is vital! Ive been recommending this book to everyone, Laziness Does Not Exist by Dr Devon Price. It totally changed the way I saw things and allowed me to finally give myself permission to rest amzn.to/3w3zb30 Keep taking it easy! Much love!
Really loved how honest and raw this video was thank you for being so honest about how much we all want to have anything curable and not ME! Slowing down will come to be a good thing you will find a way to make your plans work so be patient and think out of the box xx love you my dude
Thank you so much lovely. It's tough, but being open will help me to move forward and find my way with this. Knowing lovely people like you get it, helps no end
Hi I’m exactly where you are now and it’s taken 5 years of being really poorly , my life has changed beyond recognition my marriage has not survived my illness and have had to go through a divorce because of my husbands inability to understand and care . I am so sorry you are so sad but it’s totally normal . Unfortunately I am unable to work now and live alone in my apartment all in the space of 2 years . If having ME/ CFS has taught me anything it’s taught me I’m strong but hell life’s tough and lonely sometimes, sending big hugs and total understanding.
The heart is to send you love. I'm so very sorry to hear all you have been through. It's awful what this illness takes from us and how little this condition is understood. You are doing incredibly well to be able to keep your head up and focus on the neutral thoughts and not let it get you down, l understand how much energy that takes and how hard it is! I've always prided myself on being able to stay balanced in my thoughts but I had never realised just how much energy it takes to not let the negative stuff pull us down, we really are warriors! Thank you so.much for watching and for your lovely comments it gives me hope! 💜
This brought tears to my eyes. I have the same symptoms as you. In the last week im finding that I have to conserve my energy so I buy ready meals, take showers every other day (quick sponge washes in between) and dont go out too much anymore as i get tired. Listening to you talking about not being able to go out and take showers brought tears to my eyes cause i can really relate. Also what you said about feeling sad that you cant do your projects, that's exactly how I feel. My heart goes out to you
Hey Finn! Have you heard of POTS? (postural orthostatic tachycardia syndrome) it is very commonly comorbid with ME/CFS. POTS causes my heart rate increase 70+ bpm just from sitting or standing up and a plethora of other symptoms. I am going through the same confusing unfolding of ME and I feel for you. I'm glad you found the right help to get diagnosed!
Oh bless you. I am sorry you are going through this too. Yes I have heard of POTS. I have done some home tests and it does look like I possibly have it, though apprantly some orf of othostatic intolerance is very common in ME even if it isnt POTS. I had a cancelation appointemtn with the ME service this week. I mentioned my heart and pulse. I have high blood pressure which is being treated, so its thught my high pulse could be that, so first I need to get the blood pressure down and see if that solves it. I hope you get some answers too my friend!
@@FinnTheInfinncible Ah nice okay, thought I'd pass it along, most of my good info has come from other people dealing with this and not from doctors which is frustrating, but also gives me hope that we have each other's backs. 😊A lot of the POTS treatments (salt, beta blockers, etc) increase blood pressure which sucks. The only thing that helps me right now is pacing. The patience required to live with this is absurd. Still on the diagnostic journey. Sorry to be giving unsolicited medical advice lol someone online tipped me off about POTS and it changed everything for me. All the best 🌱
Great video! Thank you so much for sharing...I know exactly how you feel, I've had M.E for 17 years and have faced the same situations. Sharing is supporting and at the same time educating. Let us hope a cure is on the way...
Hi Finn i just stumbled on your video and thought id leave you a comment. I am so sorry you have been diagnosed with ME/CFS its a horrible condition. I am now 59 and was diagnosed at 38. i was just starting a degree later in life i also had 2 young children and my husband worked away mon/fri how bloody mad was i??? i was pushing myself far too hard and i ended up getting 2 really bad infections then my dad had a heart attack and i watched him die. A very good mixing pot to kick off ME. At first i was like you, do too much extreme fatigue then in bed for a week then it would go away and it was a vicious circle but 20 years ago there was no info out there on ME/CFS i didnt have a clue what was happening to me. So blood test after blood test etc then my GP diagnosed me with CFS. he prescribed GET and CBT, i refused both as i knew this was organic and fucking exercise are you kidding me!!!!!! i realised then they didn't have a clue! i continued with my degree with many absences but i did it, in total denial, then went to work in the NHS(at first i didnt tell them i had it). How stupid was i to push?? i wish id known. My condition deteriorated till i was working 1 day a week. you can imagine how many doctors and specialists i have seen over 20 years. All have come to NOTHING!! no empathy, no support, no understanding etc. i dont really go to talk to anyone i have coped with this on my own and its been fucking scary!! sometimes i have thought i was dying, it can be a living hell!! but i did find a rheumatologist the last few years who has been giving me steroid shots because of inflammation ( ESR and CRP) levels indicate inflammation. They have dramatically helped but my GP wont give them to me i have to pay. It definitely has an auto immune component. Anyhow the best thing you can do now is REST dont think about the future, just take each day as it comes, its horrible and destroys your old life but i have now made a new one. I make money online with art and have my own studio i built with money from my mums inheritance where i have a couch for daytime naps when needed, its my quiet place. you will need that. But you are so early into it if you rest you may improve, is a long game don't rush it. The ME association are the best support group and have a chat line they have been supportive of me. get into that community you will find many friends. My life is not how i wanted it to be but im still here!! my kids are grown and my hubby is still with me, it took me a awhile but i have accepted it, but i still have hope they will find something. The pandemic helped push things along in research due to long covid ( basically ME) and who knows?? good luck and just rest, do what your body tells you!! sending big big hugsxxx
My goodness this sounds exactly like my journey! Thank you for sharing all this with me, I am so sorry to hear what you have been through, though it really does help me to feel less alone being that your experience is so incredibly similar. Ive actually just recorded a video yeasterday, before I read your comment, where I talked about a 'mixing pot' for ME, though I think I called it a perfect storm, because I think thats exactly what my life has been. I had an incredibly traumatic young life, gender issues, addiction problems, and even when I got sober and transitioned and life improved, I was still putting my body under stress as I was doing so much, transitoning, whilst doing a degreee and trying to build a small self employed buisness! I think getting infections during my surgery, whilst managing my hectic life, a pooly dying mum, a weakened immune and nervous system from all the past stuff = perfect stom/mixing pot for ME to develp Like you I didnt know, I kept pushing, because the advice Id always been given was to push....dont le anxiety beat you...push......his is just fatigue.....dont let it beat you...lying down is just going to make it worse...push! Yep if only we had known, if only the medical profession was better informed! I am gradually starting to build a new life with ME and make peace with the fact it isnt the life Id imagined Id be having, but acceptance is still a work in progress! I have a better GP now, which has helped and more insight into this condition and what works for me in terms of pacing. Im also starting to get some help, so that I might continue to do at least some of my freelance work, just in a simplified and adapted way. I think I need to update on this video! The long covid research gives me hope. Thank you so much for this lovely, thoughtful comment. Much love to you
Ive just come across your channel and looking at you, is like looking at myself. Ive been diagnosed with fibromyalgia and me/cfs a yr ago. Im still struggling to accept my diagnoses. I often boom and bust. You have hit the nail on the head. Its a massive lifetime change. Im housebound too and cant get out of bed and you def cant think your way out of it. Drs dont understand that either.
13:00 I agree being positive is not shoving negativity under the carpet or in the random stuff draw, it is about seeing the “negative” things and looking for ways to make the better or more manageable. Throughout our lives we I have trials and tribulations that we have to over come
We are lucky that we live in the places we do, I am grateful for each and every day even though CFS/Me and Fibromyalgia have stolen my life as I knew it. I will never let it steal my dreams and aspirations for my future. The future may not be what we expected from the past but we will make it ours.
Literally can't believe how similar some of your symptoms are to mine. I'm currently wearing a heart monitor at home due the same exact reason. Basically I've been suffering with severe tiredness, dizziness, feeling out of it, heart palpitations and fast heart rate of 120 when sitting up, also wobbly and due to all these I cannot go out much at all and I only go out when I'm with someone just incase all these problems get worse while I'm out. If I'm in the house I can't do much at all, I can't do dishes or even fold clothes on some days, my partner has to do it for me. I've been going back and forth to the doctors for 3 years and only now there starting to realise something is wrong and it's not in my head. They were blaming it on my mental state and for years I've been telling them that is not the case as I'm not always anxious, and that I get these symptoms more than I get my anxiety. Anyway I spoke to a Dr last week and this Dr finally listened to me and agreed on sending through to the specialist for ME/CFS as nothing is coming up. I had a heart scan which all looked fine so just waiting to take this heart monitor back to the hospital today (well my partner will have to take it back) and see if anything turns up but after that the only thing that I can think of is CFS/ME. its sad to say but literally can't think of anything else it could be as had brains scan the lot. So just got to wait and see. Thank you
Bless your heart. It's so frustrating dealing with this because so many GPs do just put it down to anxiety or stress in the absence of any explainable condition. Sadly ME/CFS is still badly misunderstood despite advancements in understandings of it as a neurological condition of biological origin, clearly stated in NICE guidelines and the CDC. At present it takes ruling out other conditions before a diagnosis of ME/CFS can be made. I expect that like me, your heat monitor will show tachicardia but an otherwise healthy heart! You see with ME/CFS it's common to have heart symptoms because the central nervous system is affected. This means many of us with it also have dysautonomia, orthostatic intollerance , or POTS, which is where you see abnormally high heart rates on standing, dizziness etc. Just keep at the GP. I hope you get some answers soon
Hi Finn, I am so grateful that I found your channel. I have had severe Me/cfs since 2007 and I have to say that I understand both perspectives. In 2012 I started feeling agoraphobia and I couldn't understand where this came from. I realize now that I have huge fears to go out because of the crashes that I suffer as a result. I have to force myself to go out. I live on the ocean and I haven't walked along the water for years as I'm afraid I will collapse on the ground while walking. Also, I can totally relate to the laying down vs sitting up or standing. I feel uncomfortable w the latter. I think that is the POTS. Have you seen Raelan Angle's channel? Look her up, her channel is all about cfs recovery stories. 😊
Four months in and I still haven’t spoken To my GP. They seem to be denying my existence. I had to go private to get help. Luckily the OH at work recognised it immediately. I’m enjoying watching through the videos. Thanks for making them.
Dear Finn, It's like your telling my story... I struggle with ME/CVS for a long time and did the "pushing true" tacktic for many years. A few years ago i had to quit my job that I realy loved. The doctor's did tell me i had to learn to live with it and the answer to having to quite my job was. "Well, you have a husband who has a job, so you don't have to worry about that. They sad I disurved to have some rest. Well that's verry sweet, but stay at home and depanding on my hubby isn't making me happy at all. I've had therapie that was focused on accepting this, but i never will because that feels like quiting.
I've had it for 5 years and I can't except it either. I'm not very severe like some other unfortunately souls but it has ruined my life to a great extent. It's hard to except.
Dud you ever see a homeopath? I shall pray for you. Prayer cured me of chronic bronchitis and recurring pneumonia. You are so precious to make these videos to educate people. Dud you ever do acting? I see a full recovery for you. Intuitive since age five.
You must have a really good doctor to have been suggested ME. I’ve been experiencing chronic fatigue for 2 years and have been told it’s from depression/anxiety. I definitely KNOW it’s separate and the difference as my life has flipped upside down from how my life was before and after. Sadly, from experience, i go into doctor appointments expecting to be medically gaslit 😮
Welcome to the FinnFam, glad to have you here and I really hope you find my vlogs useful. I do have a website too although I'm very behind on updating it! finlaygames.com
Hi my friend xx really uncomfortable to see you going through this! Yes, we will go through it together xx you are not on your own, though it probably feels like you are. Will tell you more about where we are at on another Occassion. Love you heaps and sending vibes for resources to be there for what it is you need! Xxx
Bless you hello buddy! I'm very glad to have Chris by my side and so many wonderful friends and support. I will pop you an email, be good to catch up! Love to you both! Xx
@@FinnTheInfinncible back at ya 💕💕 I've recently had to start using a commode at night and your outlook on your scooter has got me through accepting it xx
Oh Finn, we knew you had a good heart all along 😊💖 I'm sorry you have to deal with this. It's a tough thing to deal with for sure. *supportive subscriber hugs* Shower advice (If you haven't had anyone say this already) is not to take hot showers, only warmish ones. I would almost pass out in the shower, my heart rate would shoot up drastically right before I felt like I was going to pass out. Side note; I miss hot showers, but it's worth a try if you haven't tried it already. Thank you for your waffles 🧇🧇🧇🧇🧇🧇🧇🧇😉
Helloo lovely man! Thank you for your kind words and wisdom! Yes I love joy showers and baths but have learned that they male me rather wobbly! I hope all is well with you!
@@FinnTheInfinncible Thank you, so far so good on my end, just got over a bout of either food poisoning or norovirus, took me out for around 3 weeks, going to the doctor on Monday to see if I can do anything to speed up my recovery. I lost 10 pounds in 1 week 😲 Not the way I wanted to kick start my spring weight loss goals! 🤔 I hope you are starting to get the hang of things. You're doing the best things you can, educating yourself and finding support, it all adds up to a whole mountain of "I can do this!" 😎
@@pmbluemoon oh buddy! That's one way to kick start a diet! Glad you are better now! And yes, I'm starting to make sense of pacing and using pacing tools, and generally get my head around it all!
Thanks my friend. Yes, much is misunderstood about it, and it carries a ton of stigma too, so I'm channelling my frustration into speaking openly about this, as l do about everything else! One day at a time, I'll get to a place of managing this new way of being 😚
I really feel I needed to find you when I did, and I'm so grateful to you for sharing your process on this. It means so much to me to feel less alone. I have basically all the same symptoms you describe, though I've never been able to get a doctor to diagnose me with anything (I'm in the US, and I don't think MECFS is taken very seriously here). However, I'm currently seeing a doctor who really listens and takes ME seriously, just all in bits and pieces without an overall diagnosis. One of these bits and pieces is the heart palpitations (my readings were exactly what you described - the palpitations I'm feeling are demonstrably real and abnormal, but not dangerous). My doctor prescribed a remedy that has been AMAZINGLY effective for reducing my heart palpitations and general heart rate. Step one was a low dose of propranolol (a beta blocker) taken as-needed, and it helps a lot in the bad moments, but I haven't needed it at all in a couple of weeks (!!!), since completing the second treatment. Basically, my doctor recommended safe nutritional supplements (no prescription required, at least where I am) to stimulate my natural relaxation triggers, so that my heart could rest properly when my body is in a resting state. She says that sometimes people's nervous systems get locked in a cyclic inability to properly relax, and if you can break that cycle there can be some healing. Since these aren't prescription medications, I think it would be perfectly safe for you to just try this on your own, though please do more research to make sure, since I'm not a doctor, and the last thing I want is for you to get sick(er). But basically, I took a LOT of pantethine and choline in slow-release form. You can find slow release versions on the links below. These are supplements that your system can't store and use later, so large doses are only useful in slow-release form. www.endur.com/products/pantethine-sustained-release-pantesin-300mg?_pos=1&_sid=c14c76a6d&_ss=r www.endur.com/products/choline-sustained-release-200-tablets-300mg?_pos=1&_sid=ca78b86f2&_ss=r I can describe my specific protocol if you're interested (can RUclips do private messages? I've never tried), but after a 5-week protocol my doctor said it was up to me to decide when and how to keep using the stuff. I could go off it completely and go back on if symptoms returned, or go to a lower dose as a daily supplement, or whatever. I'm doing a lower dose as a supplement for now, but if I get more confident, I might try going off it. But yeah, it's amazing how much better my heart is doing on this stuff, and I do think it's improved my overall energy slightly as well. It's no magical cure, but to have my heart behaving properly again is such a load off my mind. My blood pressure has gone down a little too (it was edging up toward "borderline" territory, but has been quite healthy in recent readings). Combined with your heart rate monitor system (I need to get one), I think this treatment might be really effective in improving daily functionality. I hope it's helpful to you!
Ah I'm glad you found me too! Welcome to the FinnFam! Thank you for this info, it's really interesting, I've been looking online at these. I'd be very grateful if you could send me your protocol please, very kind of you. RUclips is rubbish for messages but my email is finlayjgames@gmail.com
It's horrid isn't it. I fight for words and it's so frustrating. People say things to be and it just doesn't go in! Watching TV, reading books, I just can't concentrate, I loose track,.it's the most awful thing about this condition
Bless you thank you for being so honest. This disease is terrible i want you to know your not alone. Ive just done cfs me course while it was very helpfully i couldn't attend all dispite it being online due to symptoms. If you get the chance i recommend you do it cfs me affects us all differently you need to be patient as it can be very frustrating as there isnt a answer no cure and they cant say why some get better and some dont. In relation to thoughts ive had this experience what ive learnt is everything takes energy a bit like it takes more muscle to frown than smile. While you cant think your way out of me we can see triggers or stressors. Feeling bad down or powerless is common in me we grieving for the future we though we’d have that take alot of energy. stress will bring more symptoms it the automatic thoughts ill share some of mine ahhhh palpitations = though theres something wrong with my heart = fear = stress = more energy= crash. Shooting electronic pains= fear = stress ect headaches migraines face pain = thoughts = maybe ive got a tumor/ maybe my brains leaking = fear = stress = symptoms = crash. Brain fog is the worse because you cant think and function properly why cant i speak = am i have a stroke, people cant understand me, im stupid = stress = symptoms = crash. Over a period of time some of these though in relation to are symptoms become automatic you may not be aware there floating around in your head. And then we add own thought on top of them i cant walk = ill have to use a stick, im embarrassed, my next step maybe a mobility scooter, will i have to use a wheel chair, im never going to get better= panic = stress = symptoms = crash its about catching those thoughts and putting them in the bin. The symptoms put enough stress on us as we struggle to control them or live with them trying not to panic am i dying my body shutting down We have all this to deal with and managing are energy by carefully pacing activity's we manage the symptoms and response to them that all takes energy we dont have. The classic i feel great today but the next day i cant move the emotional rollercoaster this is not a phycolgical illness its a multi systems affecting many different parts of the body with loads of different symptoms which effects everyone differently. Hold on a be strong were all still learning this is hard but you are strong and you can do this. There is a letter you can download called dear doctor you can give to you doctor if needed it refers to nice guild lines its purpose is to educate doctors and professionals so me cfs suffers can be supported and receive the correct treatment the help and care we deserve I hope this helps inch by inch
Thank you for your incredibly kind and thoughtful comment. This really is an awful condition and absolutely yes, all the stress of it on top adds to it! I've just started doing a ME/CFS course with our local service and have a great occupational therapist. I can tell I will get a lot from it. You are right about the automatic thoughts, it's so important to watch those, especially because we get so many weird symptoms and often without explanation and then it's all to easy to start overthinking! Luckily I already have some practice with this with anxiety I am gradually coming to terms with all this and adjusting. It's a lot! I am going to look for that letter you recommend as I've just registered with a new doctor. Thank you so much for your kindness!
I just saw my gp to get results after a battery of tests, I already have fibromyalgia but last 7 months this fatigue is crippling so it’s probably ME as well, my doctor told me about a wellness course our health authority is involved with to help me deal with the fatigue, went home to research this and one of the videos showed a bunch of people dancing to the macerana while making a sandwich wrap 🙄I wanted to cry from disappointment it talked about boules classes and social activities etc I can hardly leave the house and this is offered, I have tons of friends I don’t need more I need help with pain 😢 so I know how you feel hun it’s hard ❤
Nice to find your channel, it was helpful. I am another Canadian with no back up, I was diagnosed with ffibromyalgia many years ago but over the last while I have felt it was more and ME/CFS fit the long list of symptoms. My GP is helpful in that he is sending me to a specialist, so we will see how that goes, however it may take months if not years to get an appointment. I have a two day craft fair in two weeks, but I don't know how I am going to manage ! I know I will be wiped out for a long while afterward. Any ideas on how to pace for this? It's my last attempt to have a somewhat normal life I guess. Many thanks. ❤
This is me, suffered from fatigue since i was a child as well as palpations / ectopic beats as well as tachycardia, all treated by the cardiologist. Just been diaged as having FM, now they say its just this and I'm stuck under the umbrella of FM.....I feel like I'm a hamster on a wheel going round n round. Ps I'm 48 now and first symptoms started at 13 at school sports day.... Sending a big cuddle to you.
Amazing thanks, i shall have a wee nosey later tonight. Having a bit of a bad crash just now so going for a wee bit of chill time just now, hope your well, sending love @FinnTheInfinncible
I just wonder how many who were diagnosed with M>E and Fibromyalgia but really had post-polio syndrome? I was diagnosed with ME after spending 3 years confined to bed and had become disabled needing a wheelchair from then on, with my dear late husband had to become my carer. But I had unfortunately then living in Kent at age 15 been pressed by my school to take a polio vaccine and I became I’ll shortly afterwards being unable to dress myself or hardly move, I now believe I have post-polio as I also have many distressing symptoms which MErs do not have - Recently been visited by an elderly man who knew about the damage this vaccine had done to many, Also a Welsh pastor with medical knowledge, confirmed the same.
I'm not sure if this is helpful, but you talked about greiving projects you wanted to do that you can't. I don't know the extent of these projects, but it may be useful to start reframing it as "I can't do this without help" or "I can't do this the way I originally planned". the world of aides and helpers and workarounds and hacks is so extensive, you can probably eventually get to some version of those projects some day, perhaps just not right now and/or not the way you initially envisioned it. reframing my "can't"s has been really helpful for me, and it might be helpful for you too
That is very very helpful indeed, thank you! Reframing is what I am trying to do with everything, and I think at last I am starting to feel some give in acceptance and letting go. Doing things differently is, surprisingly, also bringing its own unique joy!
Finn, hello from Boston. Gentle hug. Been ill starting 30 years' ago in North Carolina where hot good, smart care. Boston...not. Have learned a lot. For me, worst part is also have Hypogammaglobulinemia. Xxxxxoooo
Hello my friend! I have never heard of that one, and I dont think I could say it! We go through a steep learning curve with these conditions dont we? Its incredible how much Ive learned in a year. Hugs back at you my friend!
@@FinnTheInfinncible Ah.. well, for me it is the worst....Having had M.E many years, and super docs in NC. Hypogammaglobulinemia......means a critical part of my immune system doesn't function. So nonstop infections on top of everything. They are not bright in Boston. Despite their advertising to the contrary. But M.E.....learned way back how critical pacing is.
Hi Finn, I hear you brother. I am autistic and also have RA, next to asthma and clotting blood and some other miner issues. Last week someone send me comment how autism can be cured and I am sick of people not believing me being in constant pain. Even GP is sceptical, ofcourse I have specialists taking care of me and I have wonderfull psychiatrist, but I just have lost my job, because of bullying due to my RA and me being at home sick and in pain. I just could not take it anymore and above that nobody won´t give me any other job because of RA. Some jobs are only offered to people with disabilities, so I applied to about 100 in last month. All of them told me, I must not have any illnes of musculoskeletal system. I am so frustrated right now. I do not like being on support. I wonder if this would make a good vlog, I really am getting hopless, but my bierd is getting strong and my back has a furr now and I will have to shave my chest before the top OP. At liest one light at the end of the tunnel. Hold on there.
@@Truerealism747 I do have ADHD also and all of that together is so frustrating. Constantly tired, in pain, but the top OP is finally real 3-4 month top and all is behind me. Still can´t get any job though.
As someone who subscribed at what seemed to be the tail end of the videos discussing trans issues... will you be making any more on the topic, or have you changed gears away from that now? I found them really helpful and relatable. A lot of social media transmen I just don't vibe with, but I did with you.
Im glad you find my trans videos useful. I will always share about being trans, as its a huge part of who I am. At the moment however, my health is taking centre stage and so I want to share about what is current in my life, and at he moment its managing ME/CFS. I would love to go back to a more work approach to making content, ie making a variety of content on the topics I cover, but I am limited on energy. I will return to more trans specific content, but at the moment itll be more trans general. In the meantime I have hundreds of trans videos here and loads of trans blogs over on my website finlaygames.com and I continue to share about trans life on my social media
I have had ME and later fibromyalgia for very many years, after I took a polio vaccine as a schoolgirl and have had to live with it all I just have had to accept it my life. Re ally very hard. When even a little outing can wipe you out. Everything just costs afterwards I have spent more time in bed than being able to get up. My dear husband was also my carer but he has now gone, so need ca rears in everyday. I have just had to accept it and somehow keep going, Nothing helps really except rest, rest and more rest.
Do you have hypomobility heds I've had it since a fall 27 years found out now I have autism heds.genes for it my father had CFS now better at 74 than 40 ime 43 symptoms muscle pain the worst what age are you don't give up hope check out rccx gene theory
Have you had any kind of test for the swelling of the brain that they talk about and have done for 100 years? Cfs isnt always me ... but then they also dont seem to test for that swelling of the brain either. Just going by symptoms. If they disvoered the swelling causes me why cant they test to make sure it is that?
I stumbled across your video. I am getting tested for POTS. You mentioned your HR skyrocketing when you sit up. Have you been tested for POTS? I've found drinking a ton of water has helped with a tiny bit of energy.
Hello and welcome to the FinnFam! Thanks for stumbling in! I do believe l have POTS, the trouble is l also have a GP who is one of the old school believers of ME as psychological so he will only consider my orthostatic intollerance as in his words "unconscious stress" and sees no point in referring me elsewhere. Now I have moved area I shall change GP and try again as l think if l can get the POTS treated it may help my fatigue. Good luck with yours!
I believe I may have this but so scared that if I bring this up to my doctor that they won't listen to me. I'm having such a hard time because im having trouble walking some days and just so tired and no amount of rest helps. Do you have advice in bringing this to my doctor?
I have been doing a lot of research and have found MCT oil. Derived from coconuts. If I eat too many carbs, Im pretty useless and have no energy. MCT oil gives you a different type of energy called Keytones. With MCT oil my brain is more energetic and by lowering my carb intake, my body is more energetic. It works for me. I hope you will give it a try. Good luck friend. You are my hero
Thank you for your authenticity and for sharing with all of us. I've been going through health problems for the last couple years as well and it feels like an invisible struggle. I'm not one to comment very often on RUclips videos but you mentioned something that really made me feel like I should share - I'm someone with tachycardia and I have seen immense improvements in my energy levels since being prescribed beta blockers. I used to have a resting heart rate as high as yours and I suffered from occasional episodes of SVT. I went through a catheter ablation to treat the SVT and am so happy with the results. But, more than anything, the treatment of beta blockers for my resting tachycardia improved my life dramatically! When your resting heart rate is the same as someone moderately exercising, it puts such a strain on your body. Then literally anything you do besides sitting or laying down brings your heart rate up to the levels of vigorous exercise! If I took a shower, if I washed a couple dishes, etc. it was like I had run a mini marathon. I currently have a resting heart rate that stays around 75-80 beats per minute thanks to the beta blockers and it's allowed me to actually be able to be a functioning adult again. I know everyone's experiences are different and I don't want to imply that your issues will be resolved with treatment of your tachycardia BUT I really really really hope you seek treatment for it because it can absolutely be life changing. It might not be the reason for all of your energy issues but it could certainly be exacerbating them.
Thank you so very much for your kind comment, and for breaking your silence to share your wisdom with me! Your experience sounds so similar to mine. Im so frustrated that I have just been left to deal with this. I asked the cardiologist if there were any medication I could take, because although the arythmia isnt dangerous and my heart looks healthy, its incredibly uncomfortable to experience this pounding and fluttering, and after learning about the anerobic thershold and ME/CFS, this high high rate is definaely not helping, but the cardiologist said I dint need any meds. I shall be seeing the ME/CFS specialist soon and I am hoping that they might be able to sort this out for me. Its not right!
@@FinnTheInfinncible It certainly is not right! My previous doctor and cardiologist only really focused on my SVT, which certainly needed attention but they totally brushed my resting tachycardia under the rug. It wasn't until I started seeing my current doctor that I had it explained to me (she used the exercise metaphor and it blew my mind! I had never had it explained to me so clearly) and she's the one who started me on the beta blockers. I started on a lower dose and worked up to the dose that worked best for my body but, even on that lower dose, it was only a matter of days before my life started improving! I really hope the specialists are able to help. If not, a trick I learned from someone on the internet years ago - if you ask for something from a doctor and have a legitimate need and reason but they refuse, be sure to ask them to document in your file that you requested this and they are refusing. Some doctors I'm sure would double down but there's plenty out there who don't want to document their negligence and will instead agree to move forward with your request. I think cardiologists especially spend so much time focusing on the worst of cases and just making sure people survive, they don't see the how the "smaller" stuff can impact someone's life so much.
@@bo2572 yes I think that's likely the case, I'm not dying so ....that'll do! I'm going to see what the ME specialist says and if needs be I shall get back to the doctor. Great tips thank you so much!
Will soon be 29 years with it l take. Tramadol for my arthritis in the spine my doctor said it may help with my M.E he was right managed to get the painkiller Nubain many years ago this really helped with the M.E but cannot get it any longer,it helped so much with the brain fog,most important just to pace yourself,tc Alan UK
I can completely understand how you feel, so many of us have this experience with doctors. I suggest going to your GP and asking for blood tests to rule out any other conditions, thyroid, low iron etc, it's a basis fatigue panel of blood tests. If those come back negative then ME has to be considered. If you have an ME service in your area they can advise and diagnose
I have it and fibromyalgia. ..the fatigue is crazy how it affects me.. orthostatic intolerance is miserable. Graded exercise is no longer recommended. Like you I can t walk far and like you I m wiped out with very little functionality. I currently see an osteopath who practices the "perrin technique". Look it up. . Its a specific treatment for M.E ..it really isn't a cure but it definitely helps.
It isn't any more connected than any surgery would be. Post viral conditions can happen with any surgery infection. Plus, ME/CFS can be caused by many things and often it's a combination of factors
Hey Finn, I've just found you; sending hugs your way; I too have ME with PTSD and chronic anxiety... Dr gave me heart medication to help with the Anxiety, and, yes, it has given me more mobility, so occasionally I get to do something normal. I had to buy a mobility scooter, and had to be the big comfy one, as Sitting upright is quite a challenge. to manage the occasional outing. Please do not beat yourself up; There are 200,000 of us living with it in the UK PACE YOURSELF.
Bless your heart thank you so much for using your precious energy to leave me such a lovely comment. Welcome to the FinnFam That's amazing that heart medication has given you more mobility. Small wins are so wonderful. I'm hoping the new meds I'm soon to try out will give me a bit more mobility too. I have a mobility scooter but even using that I struggle. If my partner is with me I'm not too bad as he takes some of the energy tasks off me like taking me places, and generally helping, but on my own it's just too much to get out. I'm learning to gradually accept that it is how it is, and enjoy days where it's better and not get cross on days where it's worse, but it's so tough at times isn't it! What helps the mostbis folks who get it, so thank you so much for your kindness!
I have already written a book abymy gender transition, so yes, perhaps l should write one about my experience with chronic illness too! finlaygames.com/my-books/
Hi my friend, I don't think I'm hyper mobile. I do have pain, it started a couple of years ago in my arms. They haven't diagnosed it as anything yet, I'm currently waiting to see the pain clinic.
@@FinnTheInfinncible been waiting for them years get checked for hypomobility it's highly comorbid my other half thought she wasn't but now is and think she has ADHD to check out rccx gene theory goodnworkndo you have pain everyday
There is no specific test for ME currently, so it's a fatigue panel to rule out other conditions first and then meeting the criteria, one of which is experiencing prolonged fatigued and having Post Exertional Malaise
ME can be caused by many things but it's unlikely to be testosterone that caused this. Many people, trans and cis, use testosterone for various health reasons, if it caused ME then this would have been noticed by now. There are a large portion of queer folks, including trans folks, who have ME/CFS, but this is more likely to be due to the stress and trauma that often exists around having an LGBTQ identity. I shall be making a video on this at some point, but please don't worry. Just make sure to look after your mental and physical health on your journey, make time for rest and to allow your body to adjust, and there's no reason why this would happen to you as well.
@@FinnTheInfinncible Thank you Finn for your precious reply! Ok then, one day at a time and I´ll stop my hamster brain. Wishing you the best for your healing or at least managing symptoms. I am rooting for you!
Wouldn't it would be worth it to give your poor body a break by going off of male hormones for 6 months or so to see if this elevates symptoms to restore your quality of life? Everything I'm reading about T says it can cause the symptoms you are experiencing or much worse. You're a good person and it's sad to watch you continue to decline.
Going of testosterone isn't going to cure ME, if anything it would make things far worse, as I've had a hysto and do g make my own hormones, and the mental health affect of withdrawal from testosterone would be devestating. I'd love to be sign posted to what you are reading
@@FinnTheInfinncible My friend, I will look for medical studies and send them to you as I honestly care about you. In the meantime, can you share with us what the consequences would be gradually going off T and on E? A video on this would be so enlightening. Could you not continue to physically present strongly as XY male regardless of the survival sex hormone regiment you choose?
@@maverickspirit208 bless you, I understand. It's just upsetting when folks instantly blame gender transition because of the common belief of it being harmful. ME/CFS can be caused by a number of things, it can be hereditary, caused by an infection, stress, trauma, or a combination of these. I have been through so much in my life, mentally and physically so it's more likely to be this than testosterone
@@FinnTheInfinncibleDr taulbaum says testosterone helps fybromyalgia.its related to asperger's ADHD my father had CFS and all his sister's have fybromyalgia and sleep apnea my mum had severe ms it's related to heds to check out Dr lenz ADHD fybromyalgia connection
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](/img/tr.png)
Wow this almost exactly mirrors my own ME journey - doing aaaall the wrong things, pushing through, going for test after test after test, desperately hoping to find something treatable, even if it's scary, pleeeease just let it be treatable. And then that steep steep ME/CFS learning curve, where your own knowledge quickly outstrips that of most doctors...
One thing I have learned about people with ME is that we're a resourceful bunch, and we share our knowledge and experience with each other.
Thanks for sharing your experiences - I look forward to checking out the rest of your videos!
Have you ever had a test that shows the swelling of the brain part o forget the name of it maybe its the meninges or something ...but the part of the brain that swells in the encephalitis part. Seems like some me but not all is the same. And can't find any doctors who even seem to acknowledge the swelling brain part of the equation they just focus on symptoms checklists and not testing. Thanks if tou can help.
You are so lucky that you have a ME/cfs service where you live. I have had this illness for 16 years. I am 32 now. And I've been in this completely along for the whole 16 years. I live in Canada and there is no help or even recognition for this illness where I live 😭
I'm so sorry. It's wrong that people with ME have been largely ignored for so long. The more I learn the more annoyed I find myself! I am lucky to have a service, it's a start at least and l think with long COVID getting attention and being so similar, this may improve things going forward. Sending much love and solidarity your way.
@@FinnTheInfinncible are you hypermobile u e found the link from this to just diagnosed Asperger's to
I suggest to check into CFS HEALTH (C.hoice F.reedom, Success ~ for ME, CFS, FM, POTS, hmj, etc ~for fatiguing and undiagnosed illnesses) They have a good recovery program - simple, sensible, solution based positive recovery program - great reminders and support and fb community. They put out a lot of free content and 2-3 minute RUclips reminders and encouragement etc, as well as able to join their pay for program. ** They have a lot of amazing recovery stories of people who couldn't get out of bed etc
I was diagnosed with Severe ME ~and all the above acronyms - for past 15 years - and followed CFS Health for past decade, finally signing up at first. It takes patience, especially starting with it - took me a few months to see it making a positive difference and more hopeful. They say little by little becomes a lot - so I'm encouraged and hopeful that in about a year my life will be greatly different, possibly recovered🌈☀️😍Blessings 🙏🌟🦋✨💫
I'm also in Canada. I used to shoot have fatigue but now have constant pain. Finally got referred to a specialist after 15 years but it's still mostly video and prescriptions.
I think I have ME/CFS made cry watching this I’ve struggled over 2 years now have a bed downstairs
Thank you for this❤xx
Bless your heart. The grief that comes with this condition is so incredibly tough, so much loss to deal with. I'm constantly peeling off the layers. I wish you all the best in your diagnosis and in looking after yourself ❤️
I’m so sorry you’ve been diagnosed with this dreadful condition. I was diagnosed 8 years ago & everything you’ve said is spot on. I’d say in the beginning there is a grieving period. We lose so much. I loved my career as a clinical nurse specialist, spending time with my family & friends, travelling, hobbies, a new husband… I lost everything except my husband (who is my caregiver & my biggest supporter & advocate) one by one. I grief stricken for probably 3 years before I could accept this was my life from here on. It’s a huge pill to swallow. I’ve been bed/couch/wheelchair bound for the past 5 years. I wish you well. I hope it helps some to know YOU ARE NOT ALONE. There are so many more of us out there, & at times it feels like we’ve been forgotten. I get angry at times when I see how much attention & research goes into less common ailments. Since researchers have figured out the mechanism (which you eluded to: not enough mitochondria in our cells) with enough money and demand, progress for treatment should be made! X
The worst thing is the exhaustion and utter fatigue for me. Even a little outing can cost so much to recover from and the fibro pain on top is great with every movement, So many years confined to bed. Awful.
Me too my friend. Every single thing has a cost and everything we do we must weigh up whether that cost is worthwhile. It's such a tough balancing act . What I do find though, is that it makes me grateful for the small things and I'm working hard to find the joy in those small things!
Have you got heds after 26 years this fybromyalgia last 6 years all same condition nchanged over decades and now diagnosed autism highly causation mcas
I’ve spent my life trying to balance and rest. Unfortunately, neither one seems to make much difference. You can get extra rest and feel worse, or exercise and feel worse. Horrible disease.
Omg I got my diagnosis on Sunday it has taken me out like being hit by a bus. Your thoughts are exactly the same as mine. I was being investigated for MS and nobody had ever mentioned ME... it does all make sense but I am just at but stunned. It would be easier to be diagnosed with something that people have empathy or understanding of although having a diagnosis in itself is a relief
My heart goes out to you. Yes, I was the same, ME/CFS wasn't even on my radar, l thought I had something treatable, easily fixable, this was a massive blow I was not prepared for.
I think the best advice l can give is to get informed. That's what's helped me the most. Visit the ME websites, forums, etc, hear from those who live with this as that's what's helped me to learn techniques to manage it.
And get some support, somewhere to rant! I now have a therapist where I am processing the anger and grief at this massive life change.
I think that the first year is likely the worst, the confusion, lack of knowledge, shock, fear, it's so much! But it starts to become clearer and we did our way.....or at least that's what I'm hoping! I'm seeing glimpses of that!
Things are at least clearer and more hopeful for me than there were at that first diagnosis so hang on in!
Sending love
I have it as well
May I ask if they found swelling in your brain by a test of some kind or just a symptom checklist. I got a fibro dx and it was not fibro it was a magnesium deficiency took me years to figure out and a random lady at a store was rude enough to butt into my conversation and suggest it and it was like a light bulb turned on after taking it. But there was a video about swelling in the brain being me but no doctor has ever said there is a test.
@@FinnTheInfinncibleI had a fibro diagnosis from symptoms with bad heart arythmias and pain exhaustion etc. It was in the end a magnesium deficiency. A random lady at a store suggested it and 2 days og taking 400 mg mag stopped the heart issues and over six months other symptoms went away too the pain all over etc. It would be worth taking the rda and see if it helps. Maybe me depletes magnesium I don't know. I know my cousin has me since she had a really bad infection as a child. She's in a wheelchair now. But thank god a random lady helped me because the road the doctors were going down were going to be scary stuff burning part of my heart to stop signals and heavy medications psych meds. I know fibro is different but maybe it will be helpful. I have had so many helpful advices from people and videos compared to my doctor.
I'm so sorry Finn. The 'all in your head' brigade are really hard to deal with, even with the weight of scientific evidence there now is proving them wrong. At least the change in NICE guidelines is a big positive step, if only it hadn't had to wait 'til a time when everything's being cut back. I hope you can get the support you need, and not the 'support' you don't.
Thank you so very much for those lovely words. Yep, its hard enough managing this illness without managing the frustrations of medical professional too! The concerning thing, is if I wasnt someone who did my own research, Id be left thinking I could change my thinking and make myself better, and when that failed, Id feel so bad about myself! Well I am now going to make sure I raise awareness of this too!
I am optimistic about our local ME service, ironically, COVID has meant that an external provider is running it and the webpage lists the nice guidelines which is promising! The old website for the NHS run service has old outdated info on it, the explantion video is the most patronising thing I have ever heard! Chris was sat next to me and he thought I was watching a sermon!
Finn first time I see your videos, I am sorry and I feel for you. I am a 24 years old and I developed MECFS following my Covid 19 vaccination in October 2021. I am so mad, this disease stole my life! I perfectly understand when you say you would rather had a hearth problem that ME, as I felt exactly the same when I went for my echo. And fuck all those people who say it’s functional. Sending hugs.
Ah your message is well timed as I'm having a crappy day and you just made me smile, thank you! Yes fuck the professionals in the dark ages who insist this is functional/psychological! Honestly, I'm so knof fighting my corner which l know you understand. This illness is exhausting, never mind dealing with the stigma and misinformation on top!
I think I'd find my way much easier to acceptance, if l had proper support from professionals. I think we all would because half the fear and resistance I'm sure comes from the powerlessness of ME.
I got excited recently at finally being referred to ME service nearby but the assessment letter I've just received is more like a mental health summary!
I'm in the process of considering going private because I firmly believe that if some of my symptoms are treated, especially the high heart rate and constant palpitations, then I'm likely to at the very least gain back some energy.
I plan an update rant about all this soon!
Thank you so much for watching, and for your lovely comment. Welcome to the FinnFam!
@@FinnTheInfinncible I am very glad my comment made you smile. ME is a living nightmare and I think it is so outrageous that despite the incredible disability it creates, the illness is so unknown.
I have some very important resources that I can share with you for treating symptoms from some of the best specialist clinics in the world, how can I contact you? I can send you these two pdfs by email if you are keen. So you may bring it to your GP or specialist to discuss for treatment, that’s what I am doing as there is no other way around. ☺️
@@niccolowrld I would love those resources, yes please! My email is finlayjgames@gmail.com 💜
25/04/23 Saw my GP today and after telling her all my symptoms that I've had for 2 years which have worsened dramatically, leaving me housebound. She strongly suspects M.E./CFS. Investigations have been requested and my referral to the M.E./CFS has been started. The great thing about it, is she told me that the illness is organic and was previously misunderstood but is now being taken very seriously. Infact, she just completed training on M.E. Let's hope other GPs will be as proactive.
How are you now so true my father had it now largely ok rccx gene theory I have it because of autism ADHD heds
Hello Finn and thank you for this video which I found purely by accident!
I’m a gay guy they had lived with ME/CFS since my mid/late teens (I’m now in my early 40’s)
I empathise with you in the struggles of acceptance and all the changes that are necessary with a diagnosis of this kind.
You most definitely have a new subscriber and ally here to join you on your journey.
Sending you a gentle, healing hug.
Dan x
Ah Dan hello! Accidental new subscribers are the best, welcome to the FinnFam! Thank you for your lovely comment. Living with ME is such a challenge, the last few months I've been finding it easier to accept but my word it's still a shocker. I expect you have a ton of wisdom to share! I always say to folks that I'm so new to this so please, if you have any tips or advice, I'm all ears! I look forward to seeing you around the comment sections Dan!
It's so comforting to hear you talk about this. I've been recently diagnosed and it's so lonely and disheartening, it's good knowing you're not alone xx
You are definately not alone. Diagnosis really is so tough, and the first year is tough, in coming to terms with it, and learning to manage the condition. Have you been refered fr some support and to be aught pacing?
Dear Finn, even though it must be hard to believe, your body knows how to heal. If you need rest, see that rest as healing, as proactive. The grief is so awful, I know, but in my experience, it is part of adapting so that we accept our new routine
..It is not forever. All the very best🙏🙏🕯🕯💜
That is very very wise thank you. It's what I am trying to do, flip everything and look at it differently. It's hard, but it's the only way to deal!
Thank you so much for your channel
I have fibromyalgia and chronic fatigue syndrome.
What you have been saying applies to me in so many ways !!!!!
It would be nice to talk to you as I feel you understand what I'm going through and you sound strong 💪 and amazing!!!
Fybromyalgia is part of me ime sure
More and more traditional treatment doesn’t apply - such as in CPTSD - A neurological brain injury. I don’t mind your rants - it’s authentic and valid that this thing has turned your life upside down. I’m just glad you’re not alone 👍👍
I appreciate your comment so much, thank you!
Is what he's describing CPTSD or relayed?
His doctor seems so caring. My doctors know I have PTSD yet never connected the dots on any of my other medical problems
You've explained it all sooo well, I've had m.e for years and maybe the incessant gaslighting and my own fatigue meant I got confused by symptoms. The video explains everything I can't. Thank you. I can really hear what a fighter and can do person you are. Keep going.
Have hope,Finn.You can recover from this.I was diagnosed with ME/CFS about ten years ago.It devastated my life.I spent two years bedbound for most of the time.I could do nothing without totally crashing.Gradually,I got better.I could return to work fulltime,and my work is physically taxing..I'm a nurse.I would say I'm back to 90% health.Don't think you're stuck with this.Chances are you WILL recover.Take care.
I appreciate that so much thank you. I need all the positive stories I can get right now, to keep me going!
@@FinnTheInfinncible Do you have sore severely painful muscles?I don't recall you mentioning that.That was one of the worst symptoms I had.As you said,you can't think your way out of this.The only way is pacing,as you're doing.Many people recover,and,as I said,have hope.
@@bernadettedevereux4489 my pain is mainly chronic headaches that can last days. But, when the fatigue is high or I crash, then I ache like hell and everything is heavy. I also think its aggravated an old back injury as Im having a lot of lower back and hip pain at the moment. Basically I am ready for the scrap heap lol! And yes, pacing is the way and I am getting so much better at understanding and implementing pacing!
@@FinnTheInfinncible Oh,I know those feelings well.You're not for the scrapheap yet lol.I thought my life was over,but no..and now I can live again.So will you.
@@bernadettedevereux4489did u also had breathlessness
Thank you for this video, Finn. I'm fortunate enough to have good health but my Mum has a chronic illness. I often find it difficult to understand how she is truly feeling, this was very enlightening for me. I'm going to show this video to my Mum in the hopes that it can open a conversation as to how I can be more understanding and supportive of her illness. Many thanks
Bless you, thank you for this lovely comment I'm so pleased this video was helpful and I really hope otbdod enable you both to talk. Sending love to you both.
Thanks for the very helpful video, Finn! At the time you recorded this, your situation is very much like mine now. I've fully embraced my fibromyalgia for over 30 years, but it's just recently that ME/CFS has raised its head as relevant to me as well. I'm having to look back and see that my "pushing through" has led to my baseline reducing, to the point that I am very close to being fully housebound now. I'm very grateful my GP supported my supposition that I easily met the criteria for ME/CFS and referred me to the state physician resource that can take it from here, but I have to wait four months for that. At least that gives me lots of time to continue to deep dive and learn and grow. Also, this gives me an outlet for my autistic hyperfixation to have a new item to focus upon. :)
I'm excited to be catching up with your content from here, so I can learn from your experience and perhaps even be able to offer advice in the future, if it would be helpful.
Hello my friend. Im so glad this video was helpful. Im sorry you are struggling with these hellish conditions too. Pushing through is so easily done, because we often do not get the right advice. I did the same for too many years on account of bad advice.
Luckily, Ive slowly managed to undo that and get myself to a place where im no longer n that awful crash cycle and am mostly in a stable place where I can manage time outside more often with the help of my partner and even some tme outside on my own too. So hold the faith!
I have lots of vlogs on my own discoveries so far of managing my own chronic illness, and how they have evolved since I made this vlog you can find that here: ruclips.net/p/PL-xdbMjLqelJkN_Bw6mQUK-7WTbZtzPaX
Ive also recently written and update blog to which might be useful:finlaygames.com/chronic-illness-acceptance-mastering-being-sick/
@@FinnTheInfinncible So glad you are past the crash cycle and have a supportive partner!
Thanks for the links; I'll definitely check out your vlogs and blogs.
As a disabled person with worsening health, I've had to fight just to be listened to (let alone taken seriously) my whole adult life 😅 Especially due to my mental illnesses and being overweight, its always blamed on those when its not. Currently looking into why my joints are now constantly painful all of March, now in April, and it took me going to urgent care to get arthritis put onto the full blood test (theres a certain arthritus I can get tested via my blood test). I've always had some sort of joint and muscle pain but again, this year (especially since the start of March) its been unbarable. My GP prescribed me two weeks worth of stronger anti-inflammatory meds as ordinary paracetamol & ibuprofen did nothing other than just make my asthma worse.
You rant away Finn! We're here for you mate ❤ Always good to have a Fiaffle (a Finn waffle)
fiaffle! Love it! I really appreciate your kindness thank you. I'm sorry this has been your experience, I understand as I've had similar experiences. It's so frustrating when we know ourselves and our bodies and we are not listened too! Much love to you my friend
Omg yes! The NHS just loves to blame everything on weight. I have BPD and PCOS and before I was diagnosed with BPD I had to waste time with the doctor trying to explain I wasn't just depressed because of my weight 😓
Hi Finn, i’ve just come across your page. You’re such a bright bubbly person but don’t let anybody take that away from you. Everything that you’re going through with me/Cfs is exactly what I did, but I can kindly let you know pace at your own level. Think about the spoons method. Your doctor probably doesn’t know much about the diagnosis because mind tried to put me on depression drugs which nearly killed me. But I do urgently say that if you can get a professor who deals with me/Cfs, they will put you to have B12 injections. This has saved my life. I had a person called Professor Dr Bansal, who was in Saint Hilliers hospital. He is part of the chronic pain department in the hospital. The nurses have helped so much. I’ve now been able to deal with mild to moderate me/CFS and hold a job down to Monday to Friday and it’s taken me 10 years. Sending you a hug ❤
Thank you for this lovely comment. It's been such a tough year since diagnosis. My GP didn't help at all as he turned out to have some very outdated ideas about ME/CFS. We moved home and changed doctors and luckily my new one is much better.
We do have an ME service here, but all they do is teach pacing, they don't treat any of the symptoms, they just tell you to talk to the GP about managing them, which is very frustrating. Trying to find an ME specialist doctor is so hard. I am on a list to see one privately but his list is very long.
I'm grateful to the ME community as I've learned so much about how to advocate for myself, how to avoid harmful treatments etc. What would we do without each other?!
Thank you so much for your lovely words 💜
Wish I could reach in and give you a great big hug. Here to listen to any Finn waffles and rants you need to get out of your system x
I am so grateful for your friendshipm chatting with you always brightens my day 💜
@@FinnTheInfinncible right back at you 😊
Hugs Finn. This is so difficult. You have overcome so much and you will learn to manage this as well. Keep your head up and stay positive.
Thank you so much for that lovely comment and your belief in me! 💜
My heart goes out to you. You’ve explained it very well.
My son got ill when he was 13 & is nearly 20. It’s heartbreaking.
I couldn’t accept it at first, same as you I just wanted it to be something that was treatable.
It’s so difficult when people around you don’t understand it & think you can just push through. It’s just not how it works and until people experience it or really research it then they just don’t get it.
Praying you find your way to cope and still find some enjoyment in life 🙏🏻
Hi i am new to seeing your videos
I was just diagnosed with me/cfs just last week i feel you 💯
I'm so sorry to hear this. It's such a mixed bag isn't it? Good to have a name for what's going on, but does it have to be this? I hope you have some good support
Awww my angel. May you have the strength to bear all you can't change.
Love you to pieces and support you
Thank you!
I've been a subscriber for a number of years and just recently checked out your videos again. I'm so sorry to hear that you've got me/cfs. I strongly suspect I have it too after completely crashing at the end of 2019 and barely being able to get out of bed since then. You talking about it feels validating and, dare I say it, comforting. I am still feeling like I "should be doing things" and that I'm "lazy" and I am only now, after two years, just slowing down so I can heal better. So thank you for talking about it. Lots of love from Sweden!
Bless your heart! Im sorry you may have this too, its an awful illness to manage. Guilt about rest s so ingrained into us in society, but rest is vital! Ive been recommending this book to everyone, Laziness Does Not Exist by Dr Devon Price. It totally changed the way I saw things and allowed me to finally give myself permission to rest amzn.to/3w3zb30
Keep taking it easy! Much love!
Really loved how honest and raw this video was thank you for being so honest about how much we all want to have anything curable and not ME! Slowing down will come to be a good thing you will find a way to make your plans work so be patient and think out of the box xx love you my dude
Thank you so much lovely. It's tough, but being open will help me to move forward and find my way with this. Knowing lovely people like you get it, helps no end
@@FinnTheInfinncible you know I’m always just a message away if you need to rant with someone xx
IAM so sorry to hear..God doesn't give us nothing we can't handle we love ya Finn always here for you♥️♥️♥️♥️♥️♥️♥️
Bless your heart, thank you!
Hi I’m exactly where you are now and it’s taken 5 years of being really poorly , my life has changed beyond recognition my marriage has not survived my illness and have had to go through a divorce because of my husbands inability to understand and care .
I am so sorry you are so sad but it’s totally normal . Unfortunately I am unable to work now and live alone in my apartment all in the space of 2 years . If having ME/ CFS has taught me anything it’s taught me I’m strong but hell life’s tough and lonely sometimes, sending big hugs and total understanding.
The heart is to send you love. I'm so very sorry to hear all you have been through. It's awful what this illness takes from us and how little this condition is understood. You are doing incredibly well to be able to keep your head up and focus on the neutral thoughts and not let it get you down, l understand how much energy that takes and how hard it is! I've always prided myself on being able to stay balanced in my thoughts but I had never realised just how much energy it takes to not let the negative stuff pull us down, we really are warriors! Thank you so.much for watching and for your lovely comments it gives me hope! 💜
This brought tears to my eyes. I have the same symptoms as you. In the last week im finding that I have to conserve my energy so I buy ready meals, take showers every other day (quick sponge washes in between) and dont go out too much anymore as i get tired. Listening to you talking about not being able to go out and take showers brought tears to my eyes cause i can really relate. Also what you said about feeling sad that you cant do your projects, that's exactly how I feel. My heart goes out to you
Hey Finn! Have you heard of POTS? (postural orthostatic tachycardia syndrome) it is very commonly comorbid with ME/CFS. POTS causes my heart rate increase 70+ bpm just from sitting or standing up and a plethora of other symptoms. I am going through the same confusing unfolding of ME and I feel for you. I'm glad you found the right help to get diagnosed!
Oh bless you. I am sorry you are going through this too. Yes I have heard of POTS. I have done some home tests and it does look like I possibly have it, though apprantly some orf of othostatic intolerance is very common in ME even if it isnt POTS. I had a cancelation appointemtn with the ME service this week. I mentioned my heart and pulse. I have high blood pressure which is being treated, so its thught my high pulse could be that, so first I need to get the blood pressure down and see if that solves it. I hope you get some answers too my friend!
@@FinnTheInfinncible Ah nice okay, thought I'd pass it along, most of my good info has come from other people dealing with this and not from doctors which is frustrating, but also gives me hope that we have each other's backs. 😊A lot of the POTS treatments (salt, beta blockers, etc) increase blood pressure which sucks. The only thing that helps me right now is pacing. The patience required to live with this is absurd. Still on the diagnostic journey. Sorry to be giving unsolicited medical advice lol someone online tipped me off about POTS and it changed everything for me. All the best 🌱
Great video! Thank you so much for sharing...I know exactly how you feel, I've had M.E for 17 years and have faced the same situations. Sharing is supporting and at the same time educating. Let us hope a cure is on the way...
Thank you so much for sharing your journey, Finn - it is super helpful. I am so very sorry you have to deal with this and am sending hugs!
I appreciate that so very much my friend. Hugs right back at ya!
Yiu are sooo animated. Yiu cheered ne up! You are going to help so many people! Love from Canada.
Ah bless you what a lovely thing to say!
Hi Finn i just stumbled on your video and thought id leave you a comment. I am so sorry you have been diagnosed with ME/CFS its a horrible condition. I am now 59 and was diagnosed at 38. i was just starting a degree later in life i also had 2 young children and my husband worked away mon/fri how bloody mad was i??? i was pushing myself far too hard and i ended up getting 2 really bad infections then my dad had a heart attack and i watched him die. A very good mixing pot to kick off ME. At first i was like you, do too much extreme fatigue then in bed for a week then it would go away and it was a vicious circle but 20 years ago there was no info out there on ME/CFS i didnt have a clue what was happening to me. So blood test after blood test etc then my GP diagnosed me with CFS. he prescribed GET and CBT, i refused both as i knew this was organic and fucking exercise are you kidding me!!!!!! i realised then they didn't have a clue! i continued with my degree with many absences but i did it, in total denial, then went to work in the NHS(at first i didnt tell them i had it). How stupid was i to push?? i wish id known. My condition deteriorated till i was working 1 day a week. you can imagine how many doctors and specialists i have seen over 20 years. All have come to NOTHING!! no empathy, no support, no understanding etc. i dont really go to talk to anyone i have coped with this on my own and its been fucking scary!! sometimes i have thought i was dying, it can be a living hell!! but i did find a rheumatologist the last few years who has been giving me steroid shots because of inflammation ( ESR and CRP) levels indicate inflammation. They have dramatically helped but my GP wont give them to me i have to pay. It definitely has an auto immune component. Anyhow the best thing you can do now is REST dont think about the future, just take each day as it comes, its horrible and destroys your old life but i have now made a new one. I make money online with art and have my own studio i built with money from my mums inheritance where i have a couch for daytime naps when needed, its my quiet place. you will need that. But you are so early into it if you rest you may improve, is a long game don't rush it. The ME association are the best support group and have a chat line they have been supportive of me. get into that community you will find many friends. My life is not how i wanted it to be but im still here!! my kids are grown and my hubby is still with me, it took me a awhile but i have accepted it, but i still have hope they will find something. The pandemic helped push things along in research due to long covid ( basically ME) and who knows?? good luck and just rest, do what your body tells you!! sending big big hugsxxx
My goodness this sounds exactly like my journey! Thank you for sharing all this with me, I am so sorry to hear what you have been through, though it really does help me to feel less alone being that your experience is so incredibly similar.
Ive actually just recorded a video yeasterday, before I read your comment, where I talked about a 'mixing pot' for ME, though I think I called it a perfect storm, because I think thats exactly what my life has been. I had an incredibly traumatic young life, gender issues, addiction problems, and even when I got sober and transitioned and life improved, I was still putting my body under stress as I was doing so much, transitoning, whilst doing a degreee and trying to build a small self employed buisness!
I think getting infections during my surgery, whilst managing my hectic life, a pooly dying mum, a weakened immune and nervous system from all the past stuff = perfect stom/mixing pot for ME to develp
Like you I didnt know, I kept pushing, because the advice Id always been given was to push....dont le anxiety beat you...push......his is just fatigue.....dont let it beat you...lying down is just going to make it worse...push! Yep if only we had known, if only the medical profession was better informed!
I am gradually starting to build a new life with ME and make peace with the fact it isnt the life Id imagined Id be having, but acceptance is still a work in progress! I have a better GP now, which has helped and more insight into this condition and what works for me in terms of pacing. Im also starting to get some help, so that I might continue to do at least some of my freelance work, just in a simplified and adapted way. I think I need to update on this video!
The long covid research gives me hope. Thank you so much for this lovely, thoughtful comment. Much love to you
Ive just come across your channel and looking at you, is like looking at myself. Ive been diagnosed with fibromyalgia and me/cfs a yr ago. Im still struggling to accept my diagnoses. I often boom and bust. You have hit the nail on the head. Its a massive lifetime change. Im housebound too and cant get out of bed and you def cant think your way out of it. Drs dont understand that either.
Much love to you, Finn! ❤️❤️❤️
Thank you so much!
13:00 I agree being positive is not shoving negativity under the carpet or in the random stuff draw, it is about seeing the “negative” things and looking for ways to make the better or more manageable. Throughout our lives we I have trials and tribulations that we have to over come
We are lucky that we live in the places we do, I am grateful for each and every day even though CFS/Me and Fibromyalgia have stolen my life as I knew it. I will never let it steal my dreams and aspirations for my future. The future may not be what we expected from the past but we will make it ours.
I love this, made me smile and feel inspired, thank you!
Thanks for sharing, really appreciate it. Love your personality. For me its been 14 years and I would really rather it be something else too.
Bless your heart, I get that! And thank you for being so lovely
Literally can't believe how similar some of your symptoms are to mine. I'm currently wearing a heart monitor at home due the same exact reason. Basically I've been suffering with severe tiredness, dizziness, feeling out of it, heart palpitations and fast heart rate of 120 when sitting up, also wobbly and due to all these I cannot go out much at all and I only go out when I'm with someone just incase all these problems get worse while I'm out. If I'm in the house I can't do much at all, I can't do dishes or even fold clothes on some days, my partner has to do it for me. I've been going back and forth to the doctors for 3 years and only now there starting to realise something is wrong and it's not in my head. They were blaming it on my mental state and for years I've been telling them that is not the case as I'm not always anxious, and that I get these symptoms more than I get my anxiety. Anyway I spoke to a Dr last week and this Dr finally listened to me and agreed on sending through to the specialist for ME/CFS as nothing is coming up. I had a heart scan which all looked fine so just waiting to take this heart monitor back to the hospital today (well my partner will have to take it back) and see if anything turns up but after that the only thing that I can think of is CFS/ME. its sad to say but literally can't think of anything else it could be as had brains scan the lot. So just got to wait and see. Thank you
Bless your heart. It's so frustrating dealing with this because so many GPs do just put it down to anxiety or stress in the absence of any explainable condition. Sadly ME/CFS is still badly misunderstood despite advancements in understandings of it as a neurological condition of biological origin, clearly stated in NICE guidelines and the CDC.
At present it takes ruling out other conditions before a diagnosis of ME/CFS can be made.
I expect that like me, your heat monitor will show tachicardia but an otherwise healthy heart!
You see with ME/CFS it's common to have heart symptoms because the central nervous system is affected. This means many of us with it also have dysautonomia, orthostatic intollerance , or POTS, which is where you see abnormally high heart rates on standing, dizziness etc.
Just keep at the GP. I hope you get some answers soon
Hi Finn,
I am so grateful that I found your channel. I have had severe Me/cfs since 2007 and I have to say that I understand both perspectives. In 2012 I started feeling agoraphobia and I couldn't understand where this came from. I realize now that I have huge fears to go out because of the crashes that I suffer as a result. I have to force myself to go out. I live on the ocean and I haven't walked along the water for years as I'm afraid I will collapse on the ground while walking. Also, I can totally relate to the laying down vs sitting up or standing. I feel uncomfortable w the latter. I think that is the POTS. Have you seen Raelan Angle's channel? Look her up, her channel is all about cfs recovery stories. 😊
Four months in and I still haven’t spoken To my GP. They seem to be denying my existence. I had to go private to get help. Luckily the OH at work recognised it immediately.
I’m enjoying watching through the videos. Thanks for making them.
Dear Finn, It's like your telling my story... I struggle with ME/CVS for a long time and did the "pushing true" tacktic for many years. A few years ago i had to quit my job that I realy loved. The doctor's did tell me i had to learn to live with it and the answer to having to quite my job was. "Well, you have a husband who has a job, so you don't have to worry about that. They sad I disurved to have some rest. Well that's verry sweet, but stay at home and depanding on my hubby isn't making me happy at all. I've had therapie that was focused on accepting this, but i never will because that feels like quiting.
I've had it for 5 years and I can't except it either.
I'm not very severe like some other unfortunately souls but it has ruined my life to a great extent.
It's hard to except.
Dud you ever see a homeopath? I shall pray for you. Prayer cured me of chronic bronchitis and recurring pneumonia. You are so precious to make these videos to educate people. Dud you ever do acting? I see a full recovery for you. Intuitive since age five.
You must have a really good doctor to have been suggested ME. I’ve been experiencing chronic fatigue for 2 years and have been told it’s from depression/anxiety. I definitely KNOW it’s separate and the difference as my life has flipped upside down from how my life was before and after.
Sadly, from experience, i go into doctor appointments expecting to be medically gaslit 😮
Hey, came across your video tonight. Going through the same just now, can relate so much to this video! ❤
I'm so sorry you are going through the same. Sending you all my best
So glad I’ve found you
Welcome to the FinnFam, glad to have you here and I really hope you find my vlogs useful. I do have a website too although I'm very behind on updating it! finlaygames.com
Hi my friend xx really uncomfortable to see you going through this! Yes, we will go through it together xx you are not on your own, though it probably feels like you are. Will tell you more about where we are at on another Occassion. Love you heaps and sending vibes for resources to be there for what it is you need! Xxx
Bless you hello buddy! I'm very glad to have Chris by my side and so many wonderful friends and support. I will pop you an email, be good to catch up! Love to you both! Xx
Love you so much Finn and appreciate your openness and honesty take care lovely man 💕💕💕💕💕💕💕💕
I appreciate your appreciation! Love you sweets xxx
@@FinnTheInfinncible back at ya 💕💕 I've recently had to start using a commode at night and your outlook on your scooter has got me through accepting it xx
Oh Finn, we knew you had a good heart all along 😊💖
I'm sorry you have to deal with this. It's a tough thing to deal with for sure. *supportive subscriber hugs*
Shower advice (If you haven't had anyone say this already) is not to take hot showers, only warmish ones. I would almost pass out in the shower, my heart rate would shoot up drastically right before I felt like I was going to pass out. Side note; I miss hot showers, but it's worth a try if you haven't tried it already.
Thank you for your waffles 🧇🧇🧇🧇🧇🧇🧇🧇😉
Helloo lovely man! Thank you for your kind words and wisdom! Yes I love joy showers and baths but have learned that they male me rather wobbly! I hope all is well with you!
@@FinnTheInfinncible Thank you, so far so good on my end, just got over a bout of either food poisoning or norovirus, took me out for around 3 weeks, going to the doctor on Monday to see if I can do anything to speed up my recovery. I lost 10 pounds in 1 week 😲 Not the way I wanted to kick start my spring weight loss goals! 🤔
I hope you are starting to get the hang of things. You're doing the best things you can, educating yourself and finding support, it all adds up to a whole mountain of "I can do this!" 😎
@@pmbluemoon oh buddy! That's one way to kick start a diet! Glad you are better now! And yes, I'm starting to make sense of pacing and using pacing tools, and generally get my head around it all!
My best friend has this so this video is really interesting to learn more about it. Hope you are doing okay as possible finn
Thanks my friend. Yes, much is misunderstood about it, and it carries a ton of stigma too, so I'm channelling my frustration into speaking openly about this, as l do about everything else! One day at a time, I'll get to a place of managing this new way of being 😚
I really feel I needed to find you when I did, and I'm so grateful to you for sharing your process on this. It means so much to me to feel less alone.
I have basically all the same symptoms you describe, though I've never been able to get a doctor to diagnose me with anything (I'm in the US, and I don't think MECFS is taken very seriously here). However, I'm currently seeing a doctor who really listens and takes ME seriously, just all in bits and pieces without an overall diagnosis. One of these bits and pieces is the heart palpitations (my readings were exactly what you described - the palpitations I'm feeling are demonstrably real and abnormal, but not dangerous). My doctor prescribed a remedy that has been AMAZINGLY effective for reducing my heart palpitations and general heart rate. Step one was a low dose of propranolol (a beta blocker) taken as-needed, and it helps a lot in the bad moments, but I haven't needed it at all in a couple of weeks (!!!), since completing the second treatment.
Basically, my doctor recommended safe nutritional supplements (no prescription required, at least where I am) to stimulate my natural relaxation triggers, so that my heart could rest properly when my body is in a resting state. She says that sometimes people's nervous systems get locked in a cyclic inability to properly relax, and if you can break that cycle there can be some healing. Since these aren't prescription medications, I think it would be perfectly safe for you to just try this on your own, though please do more research to make sure, since I'm not a doctor, and the last thing I want is for you to get sick(er).
But basically, I took a LOT of pantethine and choline in slow-release form. You can find slow release versions on the links below. These are supplements that your system can't store and use later, so large doses are only useful in slow-release form.
www.endur.com/products/pantethine-sustained-release-pantesin-300mg?_pos=1&_sid=c14c76a6d&_ss=r
www.endur.com/products/choline-sustained-release-200-tablets-300mg?_pos=1&_sid=ca78b86f2&_ss=r
I can describe my specific protocol if you're interested (can RUclips do private messages? I've never tried), but after a 5-week protocol my doctor said it was up to me to decide when and how to keep using the stuff. I could go off it completely and go back on if symptoms returned, or go to a lower dose as a daily supplement, or whatever. I'm doing a lower dose as a supplement for now, but if I get more confident, I might try going off it. But yeah, it's amazing how much better my heart is doing on this stuff, and I do think it's improved my overall energy slightly as well. It's no magical cure, but to have my heart behaving properly again is such a load off my mind. My blood pressure has gone down a little too (it was edging up toward "borderline" territory, but has been quite healthy in recent readings). Combined with your heart rate monitor system (I need to get one), I think this treatment might be really effective in improving daily functionality. I hope it's helpful to you!
Ah I'm glad you found me too! Welcome to the FinnFam! Thank you for this info, it's really interesting, I've been looking online at these. I'd be very grateful if you could send me your protocol please, very kind of you. RUclips is rubbish for messages but my email is finlayjgames@gmail.com
Also getting the brain-fog quite frequently is not helpful at all. Do others get this where you just cannot seem to take everything in?
It's horrid isn't it. I fight for words and it's so frustrating. People say things to be and it just doesn't go in! Watching TV, reading books, I just can't concentrate, I loose track,.it's the most awful thing about this condition
Bless you thank you for being so honest. This disease is terrible i want you to know your not alone. Ive just done cfs me course while it was very helpfully i couldn't attend all dispite it being online due to symptoms. If you get the chance i recommend you do it cfs me affects us all differently you need to be patient as it can be very frustrating as there isnt a answer no cure and they cant say why some get better and some dont. In relation to thoughts ive had this experience what ive learnt is everything takes energy a bit like it takes more muscle to frown than smile. While you cant think your way out of me we can see triggers or stressors. Feeling bad down or powerless is common in me we grieving for the future we though we’d have that take alot of energy. stress will bring more symptoms it the automatic thoughts ill share some of mine ahhhh palpitations = though theres something wrong with my heart = fear = stress = more energy= crash. Shooting electronic pains= fear = stress ect headaches migraines face pain = thoughts = maybe ive got a tumor/ maybe my brains leaking = fear = stress = symptoms = crash. Brain fog is the worse because you cant think and function properly why cant i speak = am i have a stroke, people cant understand me, im stupid = stress = symptoms = crash. Over a period of time some of these though in relation to are symptoms become automatic you may not be aware there floating around in your head. And then we add own thought on top of them i cant walk = ill have to use a stick, im embarrassed, my next step maybe a mobility scooter, will i have to use a wheel chair, im never going to get better= panic = stress = symptoms = crash its about catching those thoughts and putting them in the bin. The symptoms put enough stress on us as we struggle to control them or live with them trying not to panic am i dying my body shutting down We have all this to deal with and managing are energy by carefully pacing activity's we manage the symptoms and response to them that all takes energy we dont have. The classic i feel great today but the next day i cant move the emotional rollercoaster this is not a phycolgical illness its a multi systems affecting many different parts of the body with loads of different symptoms which effects everyone differently. Hold on a be strong were all still learning this is hard but you are strong and you can do this. There is a letter you can download called dear doctor you can give to you doctor if needed it refers to nice guild lines its purpose is to educate doctors and professionals so me cfs suffers can be supported and receive the correct treatment the help and care we deserve I hope this helps inch by inch
Thank you for your incredibly kind and thoughtful comment. This really is an awful condition and absolutely yes, all the stress of it on top adds to it!
I've just started doing a ME/CFS course with our local service and have a great occupational therapist. I can tell I will get a lot from it.
You are right about the automatic thoughts, it's so important to watch those, especially because we get so many weird symptoms and often without explanation and then it's all to easy to start overthinking! Luckily I already have some practice with this with anxiety
I am gradually coming to terms with all this and adjusting. It's a lot!
I am going to look for that letter you recommend as I've just registered with a new doctor.
Thank you so much for your kindness!
I just saw my gp to get results after a battery of tests, I already have fibromyalgia but last 7 months this fatigue is crippling so it’s probably ME as well, my doctor told me about a wellness course our health authority is involved with to help me deal with the fatigue, went home to research this and one of the videos showed a bunch of people dancing to the macerana while making a sandwich wrap 🙄I wanted to cry from disappointment it talked about boules classes and social activities etc I can hardly leave the house and this is offered, I have tons of friends I don’t need more I need help with pain 😢 so I know how you feel hun it’s hard ❤
Nice to find your channel, it was helpful. I am another Canadian with no back up, I was diagnosed with ffibromyalgia many years ago but over the last while I have felt it was more and ME/CFS fit the long list of symptoms. My GP is helpful in that he is sending me to a specialist, so we will see how that goes, however it may take months if not years to get an appointment.
I have a two day craft fair in two weeks, but I don't know how I am going to manage ! I know I will be wiped out for a long while afterward. Any ideas on how to pace for this? It's my last attempt to have a somewhat normal life I guess. Many thanks. ❤
This is me, suffered from fatigue since i was a child as well as palpations / ectopic beats as well as tachycardia, all treated by the cardiologist. Just been diaged as having FM, now they say its just this and I'm stuck under the umbrella of FM.....I feel like I'm a hamster on a wheel going round n round. Ps I'm 48 now and first symptoms started at 13 at school sports day.... Sending a big cuddle to you.
Thank you for sharing this, wonder how you are getting on now
Thanks for watching! Here's an update on my blog
finlaygames.com/
Amazing thanks, i shall have a wee nosey later tonight. Having a bit of a bad crash just now so going for a wee bit of chill time just now, hope your well, sending love @FinnTheInfinncible
I think it’s hard for anyone who has never experienced it.
I just wonder how many who were diagnosed with M>E and Fibromyalgia but really had post-polio syndrome? I was diagnosed with ME after spending 3 years confined to bed and had become disabled needing a wheelchair from then on, with my dear late husband had to become my carer. But I had unfortunately then living in Kent at age 15 been pressed by my school to take a polio vaccine and I became I’ll shortly afterwards being unable to dress myself or hardly move, I now believe I have post-polio as I also have many distressing symptoms which MErs do not have - Recently been visited by an elderly man who knew about the damage this vaccine had done to many, Also a Welsh pastor with medical knowledge, confirmed the same.
I'm not sure if this is helpful, but you talked about greiving projects you wanted to do that you can't. I don't know the extent of these projects, but it may be useful to start reframing it as "I can't do this without help" or "I can't do this the way I originally planned". the world of aides and helpers and workarounds and hacks is so extensive, you can probably eventually get to some version of those projects some day, perhaps just not right now and/or not the way you initially envisioned it. reframing my "can't"s has been really helpful for me, and it might be helpful for you too
That is very very helpful indeed, thank you! Reframing is what I am trying to do with everything, and I think at last I am starting to feel some give in acceptance and letting go. Doing things differently is, surprisingly, also bringing its own unique joy!
Finn, hello from Boston. Gentle hug. Been ill starting 30 years' ago in North Carolina where hot good, smart care. Boston...not. Have learned a lot. For me, worst part is also have Hypogammaglobulinemia. Xxxxxoooo
Hello my friend! I have never heard of that one, and I dont think I could say it! We go through a steep learning curve with these conditions dont we? Its incredible how much Ive learned in a year. Hugs back at you my friend!
@@FinnTheInfinncible Ah.. well, for me it is the worst....Having had M.E many years, and super docs in NC. Hypogammaglobulinemia......means a critical part of my immune system doesn't function. So nonstop infections on top of everything. They are not bright in Boston. Despite their advertising to the contrary.
But M.E.....learned way back how critical pacing is.
Hi Finn, I hear you brother. I am autistic and also have RA, next to asthma and clotting blood and some other miner issues. Last week someone send me comment how autism can be cured and I am sick of people not believing me being in constant pain. Even GP is sceptical, ofcourse I have specialists taking care of me and I have wonderfull psychiatrist, but I just have lost my job, because of bullying due to my RA and me being at home sick and in pain. I just could not take it anymore and above that nobody won´t give me any other job because of RA. Some jobs are only offered to people with disabilities, so I applied to about 100 in last month. All of them told me, I must not have any illnes of musculoskeletal system. I am so frustrated right now. I do not like being on support. I wonder if this would make a good vlog, I really am getting hopless, but my bierd is getting strong and my back has a furr now and I will have to shave my chest before the top OP. At liest one light at the end of the tunnel. Hold on there.
Seams autism causes this with ADHD and heds do you have heds CFS 26 years fybromyalgia 6 same illness I believe do you have lot of pain
@@Truerealism747 I do have ADHD also and all of that together is so frustrating. Constantly tired, in pain, but the top OP is finally real 3-4 month top and all is behind me. Still can´t get any job though.
@@Truerealism747 Now I see what you mean, I just googled it and it fits perfectly. Need to consult this with my psychiatrist, thanks.
I have fibromyalgia and back and forth from the Doctor for 3year with pain before they said I had fibromyalgia 😊
As someone who subscribed at what seemed to be the tail end of the videos discussing trans issues... will you be making any more on the topic, or have you changed gears away from that now? I found them really helpful and relatable. A lot of social media transmen I just don't vibe with, but I did with you.
Im glad you find my trans videos useful. I will always share about being trans, as its a huge part of who I am. At the moment however, my health is taking centre stage and so I want to share about what is current in my life, and at he moment its managing ME/CFS. I would love to go back to a more work approach to making content, ie making a variety of content on the topics I cover, but I am limited on energy. I will return to more trans specific content, but at the moment itll be more trans general. In the meantime I have hundreds of trans videos here and loads of trans blogs over on my website finlaygames.com and I continue to share about trans life on my social media
I have had ME and later fibromyalgia for very many years, after I took a polio vaccine as a schoolgirl and have had to live with it all I just have had to accept it my life. Re ally very hard. When even a little outing can wipe you out. Everything just costs afterwards I have spent more time in bed than being able to get up. My dear husband was also my carer but he has now gone, so need ca rears in everyday. I have just had to accept it and somehow keep going, Nothing helps really except rest, rest and more rest.
Do you have hypomobility heds I've had it since a fall 27 years found out now I have autism heds.genes for it my father had CFS now better at 74 than 40 ime 43 symptoms muscle pain the worst what age are you don't give up hope check out rccx gene theory
Have you had any kind of test for the swelling of the brain that they talk about and have done for 100 years? Cfs isnt always me ... but then they also dont seem to test for that swelling of the brain either. Just going by symptoms. If they disvoered the swelling causes me why cant they test to make sure it is that?
I stumbled across your video. I am getting tested for POTS. You mentioned your HR skyrocketing when you sit up. Have you been tested for POTS? I've found drinking a ton of water has helped with a tiny bit of energy.
Hello and welcome to the FinnFam! Thanks for stumbling in! I do believe l have POTS, the trouble is l also have a GP who is one of the old school believers of ME as psychological so he will only consider my orthostatic intollerance as in his words "unconscious stress" and sees no point in referring me elsewhere. Now I have moved area I shall change GP and try again as l think if l can get the POTS treated it may help my fatigue. Good luck with yours!
I believe I may have this but so scared that if I bring this up to my doctor that they won't listen to me. I'm having such a hard time because im having trouble walking some days and just so tired and no amount of rest helps. Do you have advice in bringing this to my doctor?
Big hug from Colombia S.A.
I have been doing a lot of research and have found MCT oil. Derived from coconuts. If I eat too many carbs, Im pretty useless and have no energy. MCT oil gives you a different type of energy called Keytones. With MCT oil my brain is more energetic and by lowering my carb intake, my body is more energetic. It works for me. I hope you will give it a try. Good luck friend. You are my hero
Wow thankyou l am now just having heart flutter with me cfs so very tired I look at the dishes and say maybe later
Thank you for your authenticity and for sharing with all of us. I've been going through health problems for the last couple years as well and it feels like an invisible struggle.
I'm not one to comment very often on RUclips videos but you mentioned something that really made me feel like I should share - I'm someone with tachycardia and I have seen immense improvements in my energy levels since being prescribed beta blockers. I used to have a resting heart rate as high as yours and I suffered from occasional episodes of SVT. I went through a catheter ablation to treat the SVT and am so happy with the results. But, more than anything, the treatment of beta blockers for my resting tachycardia improved my life dramatically! When your resting heart rate is the same as someone moderately exercising, it puts such a strain on your body. Then literally anything you do besides sitting or laying down brings your heart rate up to the levels of vigorous exercise! If I took a shower, if I washed a couple dishes, etc. it was like I had run a mini marathon. I currently have a resting heart rate that stays around 75-80 beats per minute thanks to the beta blockers and it's allowed me to actually be able to be a functioning adult again.
I know everyone's experiences are different and I don't want to imply that your issues will be resolved with treatment of your tachycardia BUT I really really really hope you seek treatment for it because it can absolutely be life changing. It might not be the reason for all of your energy issues but it could certainly be exacerbating them.
Thank you so very much for your kind comment, and for breaking your silence to share your wisdom with me! Your experience sounds so similar to mine. Im so frustrated that I have just been left to deal with this. I asked the cardiologist if there were any medication I could take, because although the arythmia isnt dangerous and my heart looks healthy, its incredibly uncomfortable to experience this pounding and fluttering, and after learning about the anerobic thershold and ME/CFS, this high high rate is definaely not helping, but the cardiologist said I dint need any meds.
I shall be seeing the ME/CFS specialist soon and I am hoping that they might be able to sort this out for me. Its not right!
@@FinnTheInfinncible It certainly is not right! My previous doctor and cardiologist only really focused on my SVT, which certainly needed attention but they totally brushed my resting tachycardia under the rug. It wasn't until I started seeing my current doctor that I had it explained to me (she used the exercise metaphor and it blew my mind! I had never had it explained to me so clearly) and she's the one who started me on the beta blockers. I started on a lower dose and worked up to the dose that worked best for my body but, even on that lower dose, it was only a matter of days before my life started improving!
I really hope the specialists are able to help. If not, a trick I learned from someone on the internet years ago - if you ask for something from a doctor and have a legitimate need and reason but they refuse, be sure to ask them to document in your file that you requested this and they are refusing. Some doctors I'm sure would double down but there's plenty out there who don't want to document their negligence and will instead agree to move forward with your request.
I think cardiologists especially spend so much time focusing on the worst of cases and just making sure people survive, they don't see the how the "smaller" stuff can impact someone's life so much.
@@bo2572 yes I think that's likely the case, I'm not dying so ....that'll do! I'm going to see what the ME specialist says and if needs be I shall get back to the doctor. Great tips thank you so much!
Will soon be 29 years with it l take. Tramadol for my arthritis in the spine my doctor said it may help with my M.E he was right managed to get the painkiller Nubain many years ago this really helped with the M.E but cannot get it any longer,it helped so much with the brain fog,most important just to pace yourself,tc Alan UK
There is a new pain medication in the U.S. that is non-addictive called Clodimine! You are a fighter.
I think i have this but I'm scared of being invalidated
I can completely understand how you feel, so many of us have this experience with doctors. I suggest going to your GP and asking for blood tests to rule out any other conditions, thyroid, low iron etc, it's a basis fatigue panel of blood tests. If those come back negative then ME has to be considered. If you have an ME service in your area they can advise and diagnose
I have it and fibromyalgia. ..the fatigue is crazy how it affects me.. orthostatic intolerance is miserable. Graded exercise is no longer recommended. Like you I can t walk far and like you I m wiped out with very little functionality. I currently see an osteopath who practices the "perrin technique". Look it up. . Its a specific treatment for M.E ..it really isn't a cure but it definitely helps.
Does it help fybromyalgia
Keep searching.
I will!
I would like to know if the doctors connected the MECFS to the bottom surgery, since I’ve been hearing similar accounts from other MTF patients….
It isn't any more connected than any surgery would be. Post viral conditions can happen with any surgery infection. Plus, ME/CFS can be caused by many things and often it's a combination of factors
Hey Finn, I've just found you; sending hugs your way;
I too have ME with PTSD and chronic anxiety... Dr gave me heart medication to help with the Anxiety, and, yes, it has given me more mobility, so occasionally I get to do something normal. I had to buy a mobility scooter, and had to be the big comfy one, as Sitting upright is quite a challenge. to manage the occasional outing.
Please do not beat yourself up; There are 200,000 of us living with it in the UK
PACE YOURSELF.
Bless your heart thank you so much for using your precious energy to leave me such a lovely comment. Welcome to the FinnFam
That's amazing that heart medication has given you more mobility. Small wins are so wonderful.
I'm hoping the new meds I'm soon to try out will give me a bit more mobility too. I have a mobility scooter but even using that I struggle. If my partner is with me I'm not too bad as he takes some of the energy tasks off me like taking me places, and generally helping, but on my own it's just too much to get out.
I'm learning to gradually accept that it is how it is, and enjoy days where it's better and not get cross on days where it's worse, but it's so tough at times isn't it!
What helps the mostbis folks who get it, so thank you so much for your kindness!
I have it as well but a very severe case
Im sorry you do. I hope you have a supportive GP?
Maybe you should writeca book.
I have already written a book abymy gender transition, so yes, perhaps l should write one about my experience with chronic illness too!
finlaygames.com/my-books/
Do you have much fybromyalgia pain with it and are you hypermobile
Hi my friend, I don't think I'm hyper mobile. I do have pain, it started a couple of years ago in my arms. They haven't diagnosed it as anything yet, I'm currently waiting to see the pain clinic.
@@FinnTheInfinncible been waiting for them years get checked for hypomobility it's highly comorbid my other half thought she wasn't but now is and think she has ADHD to check out rccx gene theory goodnworkndo you have pain everyday
What test did they run
There is no specific test for ME currently, so it's a fatigue panel to rule out other conditions first and then meeting the criteria, one of which is experiencing prolonged fatigued and having Post Exertional Malaise
do you think testosterone has influenced this? genuinely curious I take T and I am worried.
ME can be caused by many things but it's unlikely to be testosterone that caused this. Many people, trans and cis, use testosterone for various health reasons, if it caused ME then this would have been noticed by now.
There are a large portion of queer folks, including trans folks, who have ME/CFS, but this is more likely to be due to the stress and trauma that often exists around having an LGBTQ identity.
I shall be making a video on this at some point, but please don't worry. Just make sure to look after your mental and physical health on your journey, make time for rest and to allow your body to adjust, and there's no reason why this would happen to you as well.
@@FinnTheInfinncible Thank you Finn for your precious reply! Ok then, one day at a time and I´ll stop my hamster brain. Wishing you the best for your healing or at least managing symptoms. I am rooting for you!
I have ME/CFS. It sucks shit.
I took thought I had MS
Love you darling xx 💖💘...
Bless you. Love you too!
Wouldn't it would be worth it to give your poor body a break by going off of male hormones for 6 months or so to see if this elevates symptoms to restore your quality of life? Everything I'm reading about T says it can cause the symptoms you are experiencing or much worse. You're a good person and it's sad to watch you continue to decline.
Going of testosterone isn't going to cure ME, if anything it would make things far worse, as I've had a hysto and do g make my own hormones, and the mental health affect of withdrawal from testosterone would be devestating. I'd love to be sign posted to what you are reading
@@FinnTheInfinncible My friend, I will look for medical studies and send them to you as I honestly care about you. In the meantime, can you share with us what the consequences would be gradually going off T and on E? A video on this would be so enlightening. Could you not continue to physically present strongly as XY male regardless of the survival sex hormone regiment you choose?
Asking just because I want you to live Finn. You're an amazing person with so much to give to this world.
@@maverickspirit208 bless you, I understand. It's just upsetting when folks instantly blame gender transition because of the common belief of it being harmful. ME/CFS can be caused by a number of things, it can be hereditary, caused by an infection, stress, trauma, or a combination of these. I have been through so much in my life, mentally and physically so it's more likely to be this than testosterone
@@FinnTheInfinncibleDr taulbaum says testosterone helps fybromyalgia.its related to asperger's ADHD my father had CFS and all his sister's have fybromyalgia and sleep apnea my mum had severe ms it's related to heds to check out Dr lenz ADHD fybromyalgia connection