Mothers with ME / CFS | Local Focus
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- Опубликовано: 15 фев 2020
- "My little boy he just... It was really hard." The heart-breaking experiences of mothers with ME.
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Ten years cfs diagnoses then diagnosed with ehlers danlos syndrome. Did triathlons marathons etc prior to illness. We are not lazy. The fatigue is brutal
Test for Borrelia infection If Igg or igm is positive then its positive! Google the symptoms of Chronic Lyme disease!
Yes, me as well. I was a vibrant athlete! This illness is a thief of all that is good. When I hear people whine about exercise, how boring it is....?? I think about how fortunate they are that they can even move.
I used to be an exercise addict. Swimming, jogging, long walks. Super slim and fit.
Now 9 years with this long drawn out, slow death sentence. And no help, no one cares. It's the worst possible thing.
I could never have imagined my life changing like this. It grieves me.
No one would make this up. No one would want this.
If you made someone live this life, even if they got benefit money, they'd go insane from boredom and being cooped up. What good is money when you can't go anywhere or do anything or share life and experiences with loved ones!! They'd slowly die from loneliness and being left out. They'd despair. It would feel like solitary confinement and a prison sentence! Yes, all while having committed no crime and that you are innocent. No fair.
It is not made up. It is horrible.
@@sassi7966 do you have much.myofacial.pain with this
I can help you.
Seriously?! It is definitely a disability! How could it not be counted as such?!
They think it's all in your head.
Lack of biomarkers and a proper definition. A such biomarker has been identified by researchers in Norway, however. And specialists have recognized this illness for quite some time, even before this biomarker was identified. Still many doctors and bureaucrats remain on the fence with full denial.
@@IgN5P I heard the same in regards to the UK yet when I brought it up (printed out the actual article and brought with me to the doctor), she said that as far as the knowledge is here that doesn't exist. So very curious what's happening.
@@IgN5P I live in the states and I am bedridden because of this illness. I am fighting for disability and finally found an actual doctor with the illness who is going to help me hopefully get disability and treat my symptoms. Thankfully
Exactly 💯
If it's all in my head, then get it out for me, please!
But no one can.
Cos maybe it's not!
If I have to get it out, tell me how, I'll do it, I'll do anything
🥺
I get smashed when doing so little... I suffer from low self esteem from being unable to work.. I consider taking my life sometimes.. I carry around so much pain mentally and physically .. I have regret from not going after my true passions ... I dont know how much more I can take.. I feel shame on an unprecedented level.. I dont know how much more I can take .. I love all of you and I mean everyone.... My wife wants me to try yoga and doesn't realize I can hardly not get crushed the next day from just walking or talking too much.. I feel like a ghost...
Word for word I agree with you, I feel your pain, I have this too 🫂🫂
I have had it for 8 years. I was a busy nurse practitioner for many years. I get it. I pray we both recover
What caused yours
@@mariasaucedo5378 in case u get no other reply here, might I just add mine..
For me it was a long list of causes:
Overwork, relentless stress, conflict, abuse, trauma, heartbreak, virus, pushing through illnesses, poor diet, lack of sleep, a lifestyle that did not suit my personality, alcohol, drugs, abusive relationships and domestic violence plus assault, mental illness, victim of crime, mouldy and leaking house, possible overuse of weedkiller (toxic), smoking, eating disorders, low self esteem, self hatred and self harm, toxic family, childhood bullying, alcoholic parent, mentally ill parents, ,,
I think that's it 🤔
I can help you.
Very glad to hear she is getting help. I am a 52 year old male and my doctor is not willing to give me this diagnoses. It will have been 4 years this November since I was able to function normally. I hate making any appointments because I never know how tired I might be. I have left every appointment wishing I had either a lawyer or an advocate with me but the doctors I see want me alone so they can belittle me as much as they can get away with. It's how they word things. I am a little more sensitive since I am unable to defend myself. This is not how anyone would choose to live...
54 year old female here- there are millions of us with this disease. We believe you 100%, we also are told it's fake/psychosomatic /just anxiety etc.
It's impossible to get doctors to take it seriously. I've met a doctor who got ME/CFS, and she ( no longer) thinks it's a made up illness.
Dakota I just wanted to reply to your comment because I've had CFS for 40 years and as I have gotten older it has only gotten worse. I am now fully bedbound and have a service dog that needs to go out and run for an hour once a day. that's it. it's the worst it's a very serious disease and what struck me the most in your comment was about these ridiculously mean rude arrogant doctors. They don't believe in it so of course they don't believe you have it. Because they don't even think it's real. They humiliate you they talk down to you and they think you are making it up. Dakota I'm so sorry but I want you to know I fully get it fully. Sometimes the only thing I can do is just know for myself what I have and just because the doctor says yes you have ME/CFS does not mean I have it or don't have it only I know what I have and what it's done to me. May you heal as much as possible and don't listen to these ridiculous doctors.
Bless you I had this also.. it was so frustrating my old doctor said we can't diagnose you with me/cfs because of mental health issues/ PTSD. So about 4months ago I changed my surgery's and my new doctor diagnosed me with cfs the first meeting and put me on venlafaxine which has helped keep me more positive! I've had this since I was 21 and now 36. It's been such a hard journey.. but feel there's a little hope now being hurd! I hope your able to find a doctor that listens and you are intitled to having someone in with you thats your human rights so they cant stop even if they want to, definitely have someone in there with you! Sending you hugs!. Xx
@@FrOgFrIeND753 Venlafaxine allows me to have a sense of humor about this horrible chronic condition.
I have had M.E for over 15 years. I have never had a doctor remotely want to help me…..all they have given me is pain meds and sleeping pills….need help but I feel truly alone…so sad 🥺🥺🏴🏴
Get therapy! It’s all in your head unfortunately
@@jongillies4871You’re so full of BS you resemble an overflowing silo.
What a HORRENDOUS DISEASE WE HAVE.
I have had CFS and ME, which started in seemingly "cycles" for 26 years.
What started as an annoyance and very uncomfortable is now , after 26 years, a daily/nightly horror-tragedy.
I miss my active and beautiful life.
If you have this, my friend, my thoughts are with you.
We have a most difficult cross to bear.
Exactly 💯
You nailed it there
No other illness is as debilitating with no medical help or at least sympathy from friends/family..
I don't want pity! Just for them to not make me feel worse about it 😔
What is the difference.in.the.two.illness
I can help you.
I wanted to update my CFS illness:
A RUclips channel called 'CFS Recovery' is helping many people recover from CFS/ME. Personally, I am having less symptoms overall ( it's been 3 months since I began watching the videos he created). Some days are more challenging than others, but I'm very glad I found his channel. 🙏🏼
Along with the channel 'CFS Recovery' there is another channel called 'CFS/ME Explored'. Both channels are helping me with this condition, that affects so many.
I'm a mum of 4,single mum and I am diagnosed with Ms and the most severe type of me and fibromyalgia. I spent up to 18hrs a day sleeping at times and i can't do much due to orthostatic hypertension, vision problems, muscle weakness etc. I was very sick on 64 tablets and morphine everyday prior to that being diagnosed by an immunologist and several other specialists. It's very hard. My boys have special needs and my partner is my carer, we don't live together but he's here 16hrs a day.
I understand what you’re going through. I can’t work either. I’m a mom and have a granddaughter as well. I’m blessed because my family is so supportive. I am constantly trying to research and find answers and I pray for a cure. God bless you.
God 💓
And Anthony William/Medicalmedium is the Answer, you need all the books or Audiobooks on Audible of him then you will be healthy again, please trust me, I know what I'm talking about.
Did you have a son or daughter? I'm about to be a first time mom, going through same thing. Happy your family is a supportive one, it's rough when you don't have that.
Thanks for reporting this important topic guys.
*I've had this since 1993 and I have lost almost everything, my job, my sporting career and my dignity. I am just so stuffed all of the time, waking up feeling shockingly tired. It started after about 8 bouts of bronchitis and then a terrible flu and then all hell broke loose (M.E sufferers will know all of the weird symptoms I mean). After two years these calmed down and now I'm left worn out for about 18 hours of the day and suffer sore muscles and exhaustion after exercise. *Life often feels not worth living*
Same!! 🥺🥺🫂🫂
I hear you😢💙 so sorry your not alone! It just seems that way cause we can't help each other😞🙏💙
I can help you. I am an energy healer with 45 yrs. exp. I am offering my service for free, but no one is responding. People are just foolish and waiting for some doctor to come up with a drug to treat the symptoms.
@@mikecarey1990 Hi Mike, thanks for your response. What sort of help do you offer and how do you go about assisting someone like me with ME/CFS?
I have been in alternative health for 45 years. I am able to tap into cellular memory to find the cause of health issues and the natural remedy. Then, I treat the person with the frequency of the needed remedy.. The results are very fast. My daughter had chronic fatigue for 8 years and no one could help her. It was then I learned about cellular memory and was able to find the cause of her illness, & was able to get rid of the Chronic Fatique and to give her good health again. That was 35 years ago and I have been helping people ever since. I just need to hear your voice on the phone in order to test and to treat you.@@ShadowMan66
Doctors think I got mental health issue when I told them about my symptoms
God 💓
And Anthony William/Medicalmedium is the Answer, you need all the books or Audiobooks on Audible of him then you will be healthy again, please trust me, I know what I'm talking about.
this isnt psychosymatic as some may think. I hope it never happens to the ones who think this. It has been a terrible past few years for me being bedridden due to this. Change doctors, please. Are you in the states?
It's easier to say "take these pills" than work with the patient to find the cause. I'm not putting down all Drs but it's really disappointing that people aren't getting the support they need.
I developed CFS after being diagnosed finally with Complex Post Traumatic Stress Syndrome. After just recently battling COVID I'm still struggling to find anywhere in Christchurch or anywhere in my life to find someone they believes the physical impact its had on my life. I moved out at 16 to go to a performing arts academy, and now at 21, I can't leave my house without a crutch or wheelchair. Me and all my immunocompromised friends are all struggling still in terms of our health being recognised and help offered. I truly hope we make it through the pandemic, but if the state of peoples lives with CFS before now were this bad, I don't have high hopes for the quality of my life in the future. I wanted to be an artist, a performer, a youth worker, I studied in early childhood, floristry, social work, and every time I had to stop because of the state of my health. There were so many things I wanted to do with my life and now at 21 no one believes I've been suffering with this my whole life already to the point where now I can't get out of bed. I truly wish some research or funding could be given to this, hell, I'd do it myself if I could move. But it's so frustrating to see how unrecognised this goes. Kia kaha
Bless her
We talked to David Bennett and he said the system wouldn't change. Politicians are the problem not the remedy
I have severe ME and 2 young children which I am unable to bring up, it is heart breaking. I have spent thousands on trying to get better and tried all the cures, yet I am still confined to the house and unable to live properly.
What’s ME stands out for?
Myalgic Encephalomyelitis
I have it 5 years now an serve and a mum an need lots of help. It's very sad but we got to b strong through this monster illness and not push ourselves past our limitations. Lots of love spoonie.
@@lelediamondASMR try an all meat diet and then add things back in to see what bothers you.
Have you tried Olive Leaf extract? I used the type called Viral X as it has other good active ingredients. I had severe ME after some horrible horrible virus. After 1 year I read about these tablets. 3 weeks later I was back at work and caring for my kids. I had a horrible die off effect but it was so worth it.
I am having a pretty bad time with crash after crash. I am so desperate. I have a little boy and it's heartbreaking not being able to be the mum I'd like to be. If anyone would like to chat, who is in a similar situation, I'd appreciate it. I am I the UK. x
So brave hun. I have it too.
Much love ❤️ ❤❤
I see you I suffer with this for a lot of years now x
I understand how you feel 😔life changing 🙏
Please make sure you’ve had an 8 am serum cortisol screening to rule out Addison’s disease . You have highly suggestive symptoms as well as the skin bronzing that accompanies it .
My own Mother had 7 children. There are not words for what she went through decades ago. 🙏❤
Aww...
Dear brothers & sisters in pain.
I joined your ranks back in 2005.
I have been chasing the illusive healing cure since then.
The only lasting healing I have received, is the healing from all natural foods & the mercies of God. Everything else seem to only help for a week or two.
But I want to share with you the greatest answer I have come up with for those doctors who "Don't believe" in our illnesses...
Just respond to them with, "If I wanted religion, I would go to church. I'm here because I thought science could help!"
I have been battling chronic fatigue for years since after my first son who is now 10. For many of these years I went without meds, I have been able to function for the last couple of years because of adderall which is a central nervous stimulant. I just wish people knew that they could probably get some semblance of their life back y talking to their Doctors and advocating for themselves to try a stimulant. You wouldn’t be stuck in the bed all day. If I don’t take the meds that’s how I am but if I take the meds I’m doing 4 mile hikes with my kids and lifting weights.
Ever been tested for Lyme disease or chronic Sprachetal infections such as Ricketsia!
Stimulants can significantly worsen many people with ME. Glad it helps you though
It sounds like it's worked for you, which is great, but it doesn't work for everyone...
@myholisticroots Chronic fatigue is not the same as myalgic encephalomyelitis/chronic fatigue syndrome...
Morning Blood cortisol must be checked as well. Some may have it low
I wish we had those centers in America.
There is a serious explanation and a therapie for ME/CFS. Please have a look at the Gupta program. It helped many people even with long-term and severe conditions
It really works. A good friend of mine, living in Berlin, recovered from ME only with the help of the Gupta program. She did try different approaches before, but nothing worked. For me as an old friend it was really difficult to watch, how her condition went from normal to worse until she was not even able to open a bottle anymore. 2 entire years she spend then "locked up" in her flat, most of the time tied to her bed due to the lack of energy.
Only by chance she discovered the "Gupta program" and started to retrain her amygdala. After several month her condition had increased so much, that she could leave her flat for the first time in two years. Today, one and a half year later, she almost leads a normal live again, though she is still not working yet but plans to pick up her old job in the publishing business soon. Watching this incredible development from a distance came close to a miracle that's why I'm convinced that the "Gupta program" is working.
@@nadinekoller7427 wow!!!! Really? And she was bedridden? Did she live on her own?
Try going to a doctor if you're male! Doctors may grudgingly acknowledge the issue till it comes time to actively stand behind the patient and get support.
🙌🙌🙌
Oh wow!! 😢 And we females have it bad enough!!
@@kelleyannethomas5372 Yeah, it maybe a factor also that doctors have so little time with the patient including paperwork, how much can you get done literally in a few minutes?
Viral X (high dose olive leaf extract and a couple of other active ingredients) cured my ME. I had a horrible die off effect after 3 to 5 days but it was so so worth it. I was barely functioning and 2.5 weeks later back to 95% of my old self.
Did it cure the pain
@Tom Sale yes it did. My elbows wrists knees and ankles were worst. Completely went away
@@rebeccabriggs2982 how did you get rid of it for me shoulders armpit s
@Tom Sale by taking the Viral X olive leaf. I felt like I had some kind of virus take over my body for a whole year. It killed it. Symptoms just went.
Maybe you have a nerve problem? Osteopath?
Or try low sugar, high magnesium diet, plus magnesium oils, creams or baths. It take 4 molecules of magnesium to process 1 of sugar.
I hate it..i have this..i sound like holly..im 32. Told its all in my head..its not.
Once you understand it's a hypersensitive nervous system and not some mystery illness you can start to recover
Meditation TMS?
@@tomsale5142 I'm not sure what TMS means, sorry
@@liam.4454 TMS Dr j Sarno
Ozone Therapy is the magic word! : )
I took suffer from this mone is extremely bad
Lyme and Borrelia and intracellular co infections cause Fibromyalgia!!!
i got fibromylagia after an acute diarrhoea attack
@@parmarsingh5373 Its A chronic Intracellular Bacteria causing all your Symptoms Could Be Lymne Borrelia or Ricketsia Typhus. The Symptoms of Fibromyalgia match The Symptoms of Lyme disease! And yes you do get Lyme disease in South Africa ! Find a LLMD ASAP!
@@parmarsingh5373 Tingling Hands And Feet, Brain Fog Fatigue , Muscle aches, Arthritus, Chronic Fatigue Heart Erythmias? Low Iron Levels, High Feratin Levels. LYME LYME LYME!!!!!
They are not the only cause
@@monkeybearmax alot of us have hypomobility and on the spectrum it's related to ADHD fhtmr gene and ocd
kawerau
Step nr 1: she have to eat!!!!!
I have recovered . Using herbs
Which herbs?
@@LuxMeow use 1-immunomodulatory herbs like tinospora cordifolia,ginseng , ashwagandha , echinacae
2- herbs for brain -ginko biloba ,bacopa(brahmi).
There are many more which I am unable to mention here .If any one wants to know then contact me on social media on Instagram etc. I started feeling normal after 3 months of using.🙂
@@gauravgupta6969 how did you do that?ive been diagnosed with this one today. Can i contact you to get more about those treatments
@@LuxMeow don't trust he is fraud
@@gauravgupta6969 abe Tu har jagah aa jata hai muh utha ke
Anti Lyme anti biotics and anti microbial herbs can treat this syndrome. Bacteria are the cause!!
Why do you assume it’s bacteria
@@davidkruse4030 Google the symptoms of chronic Lyme disease and Bacterial co infections. They match 100%. Most Doctors dont test for Borrelia and co infections .So they treat the ME And CFS symptoms , but dont diagnose the root cause and treat it. Go on to any face book Lyme disease group and ask how many have been diagnosed wrongly with CFS and ME only to later test positive for Lyme disease. THE TRUTH IS OUT THERE ON FACE BOOK!
@@charlesfeatherstone6196 my lyme is positive but not acute not chronic I have all symptoms doctr also diagnose me with Cfs/me should I need treatment? Lyme specialist?the doctr said it's weak positive what does this mean i am also newly diagnose Hashimoto thyroiditis as well I am severe sick all symptoms is like Lyme severe
@@Hk78666 Hi, Sorry to tell you this but I think you have Lyme disease. Most doctors dont know how to test for and treat Chronic Lyme disease. I would go to a LLMD that believes in chronic Lyme . Your symptoms will continue and you may deteriorate if you dont get treated !
@@Hk78666 Me is often just a symptom of Chronic Tick borne Infections such as Q fever, Lyme disease and chronic Ricketsiousus. The bacteria enter the cells thus becoming an Auto immune condition. Ricketssia And Lyme Borrelia have been isolated within human cells, thus often need months or years of pulse theraphy Anti Biotics!
It is in your brain. Your HP axis is no longer working.
Virus/Retro-virus
That's right! Stuff that causes inflammation got it to the brain. Better take some herbs and spices to fix that. Herbs like cats claw, Pau d'arco, polygala-tenuifolia, Cistanche, Yuan Zhi, Japanese knotweed, trans e viniferin, bilberries, resveratrol, curcumin,mullein, astragalus, Mucuna pruiens, blue berries, galangal, etc.
I fall asleep while driving 😴 🚘
Just laziness