Nailed it! I've had Fibro for over 25 years, and I've had to explain things to family members over and over. My sister-in-law told me that I really just need to stretch more in the morning..This would help me with my Fibromyalgia. I wanted to punch her in the face.
Sorry, this comment made me chuckle. If I’d only counted the times people have said these kind of things to me. I’m now 72, was diagnosed at 50, know I’ve had it all my life. The people I’ve wanted to punch. I look ok but I look mad all the time. It’s holding in the pain showing on my face.
Hi Melissa! Hahaha! I think we are related! Your comment about punching your sisterinlaw made me laugh!! I've got one of those sisterinlaws! I'm suffering today. I've had this shit since 2008. I'm looking for an answer. None yet!
I'm a retired healthcare professional with fibro for 20÷ years. Family and friends still don't get it. That's OK, I set my own boundaries and live within them. My acceptance of my limitations was much harder than wanting or needing the acceptance/understanding of others. I found you get more compassion and support if you tell someone you broke a finger nail than if you tell them you have fibromyalgia. Keeping a sense of humor helps.
When I was first diagnosed in my 20's, most doctors didn't believe in Fibromyalgia . Was very hard to get a diagnosis. I have had to explain over and over most of my life. Now that I am 70 yrs. and visibly struggling from other illness, most just accept it when I say "I can't do that today" or "I'm not up to it". Younger folk still have the trouble with friends and family not accepting that you can't participate in something or that you stay for shorter periods. The "just do this or that", the feeling from others that they believe you are "faking it" or just trying to "get attention" or the many other cruel (even if they are not meant to be) comments leave you isolating yourself from others so as not to deal with it. I understand.
My sister used to say “ All you need to do is get out and exercise more!” It wasn’t until I ended up with cancer, that she finally shut her mouth! I was exposed to pesticides years ago and I have suffered from CFS and fibromyalgia for some 40 plus years….just so tired so much of my life and in pain so much if the time….now with cancer this past 12 years…it is just so much worse….tired of making excuses for why I don’t feel up to doing things with others…thank you for this video….many are just ignorant ….they don’t understand….I make my choices now and … keep my associations limited to only a few who understand…thanks again….
My mum's best friend was also exposed to pesticides and developed CFS/FM not long after. This was when she was in her 40's. She is now 92 and is relapsing with her conditions. Her daughter had it when she was a school girl back in the late 70's. I had CFS (not FM) 15 yrs ago and was "out of it" for approx 3-4 years and still have to watch myself now. My brother also had it. I firmly believe it's hereditary as I've heard other cases of it running in families. I'm so sorry you only got "understanding" when you had a "real" diagnosis of your cancer. Typical isn't it? Not only do we have to deal with an extremely strange and debilitating condition but also we have to deal with people who just refuse to understand.
Good advice, thank you. I often wish that I look as bad as I feel. Most of my explanations are met with something like, 'But you don't look sick. Are you sure you're not exaggerating your symptoms?' Or I get told, 'You just need more sleep. Are you sure you don't simply need more vitamins?' Guys, I live with a complex and little-understood chronic illness. There are thousands of people like me. If something as easy as vitamins could cure it, no one would have it at all.
Rowan Hagen isnt it amazing that people seem to assume we haven’t tried to cure ourselves? Or that we enjoy being sick? People can say the most idiotic things!!
Rowan, your comment is spot on. Made me cry.. this is really hard! People who can't feel/live this just can't understand. My son can be so ugly..It's terribly painful.
People who don’t have it... don’t understand..... they say “you don’t look sick, you look amazing” Or they think I’m arrogant and bitchy for avoiding social situations. It’s already tiring suffering from fibromyalgia without having to constantly explain myself. This condition should be spoken about MORE. Thank you for this video 🙏❤️🙏
I feel ya awful I'm fed up of having to tell people I'm not going here, only to be sighed at or looked at as if it's that bad! Like you say it's already draining then having to explain yourself over and over again And not being taken seriously, is another hurtful blow.. I've had fibromyalgia 16 yrs And I wouldn't wish it on anybody
this worked for me up to the 10 minute point. my parents were narcissistic, and i tended to attract the same in friends. Family is gone, friends are gone EXCEPT for the ones that understand that pressure and disappointment will actually trigger the illness.
me too. I was excited for this message until the part about people caring and that is why they nudge you. people not respecting boundaries, pushing unsolicited advice and questioning my functioning level don't have my best interest at heart and in fact have shown hostile behavior because they can't manipulate or control me in other words they need to feel superior and that is not supporting someone. I dont have to understand someone to respect their boundaries.
I've had fibromyalgia and CFS for over 36 years, along with extreme back and neck problems, sciatica,etc, and having a malabsorption problem, and these are just the highlights. I'm now very much alone and have been screwed over by numerous people, especially my family. But I'd rather be alone than to continue dealing with the abuse from others.
I have a sweet lady that I've been talking to for seven years online and she deals with Fibro. I saw his video on Fibro last week on here and realized i didn't truly understand what she deals. So i watched that one and now i'm gonna keep watching so i can support her and understand what she is dealing with. Thanks for the videos.
THANK YOU, THANK YOU, THANK YOU, You supporting your friend to start with is worth it's weight in gold but to actually WANT to find out more, so that you can truly support her is something that all of us wish someone would do for us. Sorry, i don't know you or your friend but to have a real friend like yourself is a gift that i know she will really treasure. She doesn't have to explain things or feel like she is wasting her breath because no one understands or really wants to know anyway. I wish there were a few more friends like you in this painful world
Thank you for being such a good friend to her! For those of us suffering from an "invisible" yet debilitating chronic illness, people like you are few and far between. Bless you.
Thank you for thinking outside the box and engage with the part of yourself that acknowledge learning is the only way and, in order to learn, you need the will and the courage to accept many of your previous ideas about a topic (fibro in this case) unrelated to your personal life might be very different than you thought. Good for you!
It's pretty bad when your partner thinks you are just faking because you don't want loud tv or bright lights . Sometimes I go in the room to read because he is too noisy ,not because I don't love him, because he refuses hearing aids & my fibro become triggered & I flew when he has thing so loud evens hurts my ears with plugs in.
I have had fibromyalgia for years and I am a housekeeper. I work for myself cleaning residential homes but I have been struggling so very much to make it through one house and I use to do 2 a day. I really couldn’t figure out why bright lights and loud places plus talking a lot on the phone bothers me so much, now I understand why! I never thought it could be from fibromyalgia. Fibromyalgia and menopause have destroyed so much of who I am. This video makes me feel better knowing someone else understands! Thank you!
When you tell a family member/friend you have FMS, that'😻s all you should have to say. If they care about you, they should find out about it and act accordingly. Many think I don't care because I had to change my life. Too bad! My house isn't very clean, I stay home much of the time, and respond to activities at the last minute. I have just learned to respond to my 30 years of disability, life is what it can be!
I'm learning many things & seeing myself in these videos. I tell my Mom "Fibro Day" when I'm on the severe end of the pain spectrum. I also tell her "good day" when I feel in control & "I'm not sure" when I cannot focus. We're working on housework together now instead of separate.
Sometimes I just can't spit the words out and I feel like a dummy. The brain fog is horrible. Nobody but nobody understands what we are going through. I am a Catholic Christian love my Jesus sometimes I think that should be enough but that doesn't help my condition I pray a lot I guess my looking forward to heaven is better than living on this earth with this pain.
I have had ME/CFS for 35 years and I’ve heard and been through it all. The disbelief and skepticism of others, including the medical establishment, the loss of friends because one can’t “ “keep up” with social life, loss of income, etc. etc. The advice to stop explaining is excellent. I’ve learned this and now simply say “ I appreciate you wanting me to participate. I’ll look forward to doing so another time.” If someone persists I just stop talking and separate from them. We don’t need the stress. We don’t need anyone else’s approval, acceptance, or permission to take care of ourselves. “ There’s nothing more enjoyable than cancelled plans”!! 😊
I've too have suffered CFS/ME for 28 years, it wrecked a professional sporting career at age 26 and also any advancement in my chosen working profession. At times I have almost given up but for raising a daughter by myself as a solo father in the early days. Chronic pain has been a major part of my problems along with bone crushing fatigue. I have about 2 good hours in me per day. Shattered is not enough of a word. Penelope I know *exactly how you feel* Much love and care from NSW Australia.
I have so much empathy with you all. As a 38 year sufferer I would say never give up hope. The last few years I am gradually improving and at a progressively faster rate. I got so fed up with explaining to others. Now I don’t bother, and there has been no adverse reaction. I think this has helped.? A few months ago I went 2 stops on a bus. I crashed out afterwards for a few hours, not weeks like before. I don’t know why I have improved, but am so happy to have done so. Be kind to yourselves and hang on in there
@deborahmaldonado3992Thats interesting about Magnesium, as I read another person suffering from ME said he'd gotten much better with Electrolytes like Ultima daily. I tried that and I was actually able to get out of Bed! It was incredible...a simple thing like that making me able to take Showers and not suffer dysautonomia. Could not believe it. With that experience I discovered taking 35,000 IU of Vit D and after a few days I noticed such a difference. Within a few weeks I was actually able to go outside 😭 Makes sense as most if us don't get the Sun soak being Indoors so much after onset of Illness. (This is not Medical Advice. Always speak with your Doctor if this is right for you)
Yes I’ve endured the loss of friends because I’ve had to cancel so many times. Or be late because I move in neutral or first instead of fifth gear now. Yes, after 33 years I’ve endured the frustration of many clueless doctors. Now, it feels so good to just go lie down when I have to and not feel guilty. I don’t have a social life anymore. I don’t “entertain” and my husband finally understands that “today” I can’t go to wherever we planned to go. It has taken me 20 or so years to get to this place of freedom. I’m not glad that I had to. I would rather have my old, do-anything-for-anyone and do-anything-I-want-to energetic life. But that is no longer my reality. I just hate the thought that anyone thinks I’m a hypochondriac, but I can’t help that. I accept me for who I am and I love myself. I am not lazy. I play catch up on my good days and over do it. I love to work and go and do. Don’t we all? If someone doesn’t know me or understand the real me, well that’s ok. I know me. And that’s enough. Once I learned how to say that little two-letter word “no”, I was set free!
Thank you so much for sharing your wisdom. It's taken me 44 years to begin to reach the stage of guilt-free freedom you describe. I wish I'd understood this decades ago but I'm so grateful to be where I am now.
Really helpful and much needed. I've had ME/CFS over 40 years and I've had to forgive those people in the medical profession who've caused more problems through their negligence, arrogance and plain ignorance. I'm burned out by not keeping these boundaries so I guess every day is a new start. Thank you so much for this. I have now subscribed!
Yes, there comes a point where you just have to let it all go ... Takes too much energy to hold on to the emotional pain of what we endured in the past.
This is sad but true , I've had me/cfs & fibromyalgia for 12 years now . I tried to tell everyone of my limits and to remind me when I was doing to much sadly it fell on deaf ears . I know have tried to stop explaining myself and nobody understands , then that causes me to feel guilty . When you've been sick for a long time nobody wants to know . Pure ignorance . It has made me slightly bitter .
I was so blessed to have been recommended a super Dr who specialises in Adrenal fatigue and has ME himself. One of the first things he stressed was to go for grief counselling to cope with the loss of my "normal" health. Second was to never explain more than once. He said I didnt have the energy to waste and if they really cared or loved me they would research for themselves. Wow. Hard to do, but its getting easier.
"Not trying to live up to someone else's (imaginary) standards." The only thing you CAN control is the kindness and understanding that you show to yourself. Amen. ❤
I Heard the Message with tears in my eyes. So true and important ....which I would have learnd IT earlier in my 35 years of struggeling with CFS and the " well ment advices " of other people. ! Thank you for these helpful words !
My husband has been living with fibromyalgia for 12 years. I'm so tired/sick of explaining what is going on with him. Everyone looks at me as if I'm making it up. These videos have really helped me understand what he is going through. Thank you. 😊
I understand, my daughter (32) has had cfs and fibromyalgia since she was 14. Now has gastritis and pots. She never complains but she is bedridden mostly only able to get up into her wheelchair to get to the bathroom and then we eat a meal about 7pm and she goes back to bed. 22 hrs in bed every day, I have long covid so I can feel the fatigue she has to a lesser degree. I always say even though I live with her and see the toll it takes on a vibrant, clever, wonderful woman that she is, I still don’t know how it feels. We are ok together on our own but any interaction with others is exhausting.
Watching this because I’m in bed with viral gastro and a huge flare up after pushing myself to multiple events. Single parenting and working is enough. Needed to hear this. Great video thank you.
I had to work out what and who mattered when I was really bad with my CFS. Your children (family) and your work are enough. Nothing else matters when you have CFS. We have to learn to let everything else "go".
I have had CFS that eventually morphed into fibromyalgia starting about 1981 or 1982. Life has been far less than par for too long. Anything that could stop the pain, brain fog, memory problems, neuralgias, mood swings, depression, etc., would be a miracle. I have subscribed and will pay attention. Being 60 years old and not having really lived life is awful.
I hear you Patricia. ..I got ill in 1978 aged 14....I wasn't diagnosed for anorher 14 years and even then my GP refused to believe it. .sent me for counselling which I couldn't get to. What no one really understands that you haven't been able to grow up normally and don't know what Normal is! What I called tired others call exhaustion or migraine or flu symptoms. You can't have a career as you have to keep demoting yourself and live basically on the bread line. I had to finish work in 2011 after divorce from a 2 year marriage finally wiped me out, i was homeless etc and found the Optimum Health Clinic but it was too expensive to carry on with it. It has answered many questions and I know so much more than most doctors ...they refuse to accept that it's adrenal fatigue. .thyroid is normal etc. Why have you been so ill for 40 years despite being so strong otherwise? Why can't I get well? Finally found out that I have been the victim of Narcissistic Abuse since childhood and that it's not my fault that I attract violent men. When you live in fear and constant fight or flight is it any wonder that you can't get well? And once you are safe you get all the flash backs and feel a failure for not being over it emotionally. This year am done explaining to people. ..am going to have fun doing art and I only take supplements when my body tells me too. Am lucky to have met some good people who give me Emmett or Reiki...etc.. You go thru do many alternative therapies and finding yourself and it's a healing journey that never seems to end. ..it's so hard to finally live for myself and think Well when you have to Pace. ..which is damn near impossible. .. But never give up. ..the answer is within you and I ...and I tell you what. ..we should be proud you and I for coping with all the pain, gut problems and brain not working well. ..etc etc and not having lived or met milestones others take for granted like having a family or going on holiday. We are Strong and still here. I think we need to wear this like a Medal... and we will get well or perhaps it's better to say 'I am recovering' ..Cos we are in small ways..each day. Don't give up..sending you love and hugs and God bless.
To understand this, you need to be a sufferer and a expert. It took me 7 years to figure all of this, and get diagnosed and 7 more years to achieve expertise. I have a overactive immune system, mcas. Fibromyalgia and CFS are comorbidities of mcas. I have multiple comorbidities. It is very difficult to explain multi system polymorbidity to anyone, even physician aren’t in the know about inflammatory diseases or rare autoimmune disorders. Doctors don’t know what to test for or are unwilling to let the patient educate them. Medical journals in India have better information than American publications. I was diagnosed by a immunologist/oncologist. I’m glad I got to the right doctor.
No one ever told exactly what I feel and how people react just like you are saying. I doubt myself and my tiredness and my real pains... Thank you very much!
Thank you for supporting us Dr. and helping others understand. What has helped me some is magnesium before bed, reflexology foot mat, roller foot massager and KSM treatment has helped a lot. We have to take one day at a time. 🙏💪
Thank you for the very helpful video❤ I miss someone to talk about my difficulties in life. I have diabetes type 1 for ten years, long covid symptoms since 1.5 year, my vestibulair nerve was damaged by covid and made me develop chronic fatigue problems. I was allready quite sick from diabetes because I could not get the right treatment. I now start to feel isolated and distanced from friends. It takes too long for them and they find it irritating that I am so tired all the time and can't come to their meetings. They are really energetic and never had something happen to their health. They don't understand. My therapist also does not understand, she says I just need more confidence and I can work. But I'm crashing so hard I can't even get out of bed after short activities. I try to pace myself more now. I keep hope. Last week I wanted to try and be with my friends for a day and I'm still suffering from adjusting myself too much. I'm starting to think I'd rather be misunderstood and possibly left than to live my life in the people pleasing mode, if the price is so high. I hope my friends can be patient with me, but I'm not sure. I am going to listen to my body better and respect it more, even if others don't.
It is great to hear that others are in the same situation than me when our close people affecting us more and that you understand our situation, that really help because close people don't understand when you are looking for appeareance healthy but you are not healthy and didn't realized that you are pushing yourself too much to do your best and paying the consecuence of your efford with painful nights and days😢
This is so so true....The only people that understand fibromalgia is the people who have fibromalgia, and they are learning more about fibro on a daily basis......Thank you......
Thank you for your quick response to my comment on the other video. You are the second person I have heard (& both just recently) who has spoken about self kindness. I had never heard the term earlier & I find it resonates more with me than the term self love. That term has always struck me a bit weird. I can get behind the concept of self kindness more. Again thank you for your response & for suggesting this video.
As an FMS person for 30 years now I just do whatever I want to do at any given time...it really depends on the circumstances. The thing is... opting out or opting in is a choice for everyone regardless of whether they have a chronic illness or not...get on with life in your own way 😊
So very true. Unless someone has symptoms like Fibromyalgia, etc., they cannot possibly know how we feel. Thank you for this video! No one truly knows how we feel but I would hope they would have empathy for us. 🙏
Give myself the respect i deserve is the key!! " Not to wait for other's to do so. And especialy not to dwell on what they might think of you. "Live and let live!" "Be true and kind to yourself and don't wait on other to do so!"
Thank you for including sensory stimuli in this explanation. It’s really hard to explain to others how bright lights, noise, busy environments and even listening to conversations are so so exhausting. Unfortunately this is something that those “professionals” who make decisions for disability allowance still discredit and tell you “those things don’t impact your life” (why they think they know better idk??). It’s really disheartening
i was VERY active and social and a happy workaholic before i got hit out of nowhere with lupus n fibro n a few other lovely autoimmune diseases....what a shock to all of a sudden living such a limited life and esp the shock of how rude and ignorant even family can be, so dismissive, and i cannot stand when they use how good i LOOK to explain WHY i SHOULD be doing everything as before!!! its exhausting! and demoralizing. like not even my own mother takes the few minutes it would take to look up even one of my diagnosed illnesses and maybe show a bit of compassion, smh. mind boggling! i was an RN and my entire family n most friends are in the medical field so you would THINK they would have some sort of knowledge, common sense, or at the very least some motivation to try and understand but hey, ppl are surprisingly self centered for the most part iv learned so i just had to start working for myself, for MY health, and trust me im not used to saying NO to ppl esp re fun things like parties, trips, shopping, etc!!! but on my "good" days, or hours, i tend to way overdue it and then i physically pay big time for weeks or months. so after a decade of mistakes i now simply say no and listen to my body. it sucks though. it truly does! i feel like a hundred yr old woman and it makes me feel ashamed and weirdly guilty. iv dropped soooo many friends, dont socialize online even, just lead such an isolated life now. im not enjoying that but its what i need to do to avoid the constant criticisms and accusations. i also no longer see drs...theres no need cuz they cannot do anything and im allergic to all meds so whats the point.. tho thats actually a blessing financially lol👍 im rambling, sorry if anyone actually reads this. just....chin up all you fibro, lupus, cf, ms etc warriors...enjoy as much of life as you can and get close to God, He is SUCH a wonderful God and this life is fleeting, soooo much to look forward to in our next eternal one, praise God for His love, mercy, grace, and deliverance, His promises are true! one of my fav bible verses, Isaiah 46:4 "I am He, I am He Who will sustain you. I have made you and I will carry you. I will sustain you and I will rescue you". also i love in IICor 12:9 where Jesus said, "for my grace is sufficient for thee for My power is made perfect in weakness".🙌 blessings to all of you invisible but much loved ppl out there...sending you all big mental hugs🤗
Wow you sleep? I get about 2 hours a night ,spend all day exhausted then midnight comes and I am more awake then I have been all day ,then if I sleep in ( because I've gone to sleep at 5am) I feel guilty and if my husband is around he is very good at making me feel that way ,I have 3 different types of arthritis and fibro and a lot of other bits and bobs going on with my health and I'm a career for my son so yes it can be hard , about a week ago I was house bound for about 10 days, I do find that the best thing I can do is pace myself,. If I go out one day see if I can stay in the next two to recover ,and on good days it is hard not to push yourself just remember that you will pay for it for the next few days ,so just take it easy ,
Debbie Cicalese I have had Fibro since 1981, I'm now 68 yrs old. My wife is very understanding about my pain. If you don't have a support group helper spouse it is very difficult indeed. As I get older my pain gets worse I also have several bulging discs. I understand all your pain I'm so sorry if I didn't have my wife I don't think I'd be alive right now. My daughter died 10 years ago she had fibro as well. I have a lot of friends that are very supportive because they know someone that has fibro and others that have died with fibro Etc. The only thing I can suggest is to join a support group surround yourself by positive things people situations Etc. I usually sleep in the recliner because I can't sleep in the bed usually because of my back. If you have any questions go ahead and send them to me everyone is different. Please take care sincerely Arnold Bourbon Amaral 👴💏🌹🌎💝
I stopped explaining myself to people who don't seem to want to understand what the silent pain is like. My family have been very supportive and my mother went as far as to do research to understand why sometimes I don't want a hug or to be touched because it hurts.
People’s comments are so dismissive. If I couldn’t walk and needed a wheelchair, they wouldn’t be saying, “c’mon you can walk, get up!”. Thanks for the message, it came at such an opportune time. I will try!
I have struggled with CFS and Fibromyalgia for about 16 years and it´s only for the last 7 years I´ve been kind enough to myself and say NO to things I can´t do or that just pressures me too much. My husband is wise enough to understand, without commenting, when I want to go home early from a party or other events. I always say - Now I´m tired and want to go home. And that´s it. No more , no less. We received an invitation for a big birthday party some time ago. I was so glad that she invited us, but there´s no way I could manage to go. But I was so glad to be invited, I simply told my friend that I was so GLAD to get invited but I can´t come because of all noise and talking e.t.c. Her answer: -She knew I probably couldn´t come, but wanted to give me the opportunity to say yes or no. I only explain to people when I find it important or worth it. Otherwise I don´t care of what they think or might say. Thank you so much for this video and you inspiration.☺🤗
Thank you! I have started missing large family get together especially if certain in-laws are there that don’t particularly like me. There was a gathering for my Great-grandson’s 16th birthday. It lasted 5 hours in the hot sun. I stayed home. I missed my Grandson’s wedding two summers ago. Much longer time frame outside and again in the very hot sun. I really missed going to both but could not handle someone having to drive me home early when I feel ill, taking them away from the wedding. So I don’t go. I know many don’t understand but I have to do this to avoid a bad flare. I have had fibromyalgia for 32 years now. Mine started from a severe staphylococcus infection following surgery. Thank you for this video. I was enlightened by it. I also needed the validation. 🇨🇦👏🏻👏🏻👏🏻👏🏻👏🏻❤
I decided in my lifelong suffering depression...that its going to be there ...choose to understand it .i tell myself that.thats its still a good day even when im sad.
Sweetheart, you are not alone. I am in the same situation, but you know what? Now I’ve found some hobbies which helps a lot, for exsample mandalas and zentangles...it is so relaxing, figure out what could be the most relaxicing thing for you, just try.. I wish you all my best 😘😘😘😘
You’re not alone, I cry too. It’s tough to live this way. Do the best you can, that’s all you can do. Gabapentin has been the only thing that keeps me sane, I’ve tried everything else, holistic, acupuncture, but I have to have some quality of life. I have to work!
I've had autoimmune conditions for about 43 years starting with Sjogren's, but now the list is much longer including severe fibromalygia and ME/CFS, but still I started working when I was 15 - had three part time jobs during HS as well as in college, and never went more than a few weeks without working. I didn't go on disability until I was 55, after putting in 44 years of work time (about 4 years of overtime) and was 1 point away from kidney failure and had such violent vomiting for a year and a half, breaking all my ribs more than once. After going on disability, I broke 6 bones, and was hospitalized for cellulitis and DVTs, among so many other things, but am currently caring for both my parents who live 40 minutes away from each other. I get so exhausted I nearly pass out, shopping, cooking, cleaning, etc. And still, most people think I'm goldbricking, and yesterday my sister called me a moocher for being on disability, just as she came off her 6th round of unemployment. I've been criticized for my hair falling out and for Sjogren's ruining my teeth (no money for implants), and laughed at right to my face. My good friend of 25 years is now ghosting me because I'm 'too boring' since there are things I just can't do anymore. Right now I'm being tested for Multiple Myeloma, as well as Parkinson's and MS due to a worsening tremor. I also have vein failure in both legs, causing swelling and very noticeable discoloration and get jibes for not wearing dresses or shorts. I could add plenty of other examples, especially concerning my hearing loss and the weight I've gained from 5 years on Prednisone. I even gave up my disability parking tag because of being accused of not being disabled enough. I've had medical staff accuse me of faking to get opioids (I'm allergic to them!). I never married or had kids because I just didn't have the energy. I have a hard time reading, listening to music, and watching t.v. because they now irritate my nerves (heartbreaking to me). Invited to a party? I'd rather get a root canal. My depression and insomnia are down the rabbit hole. Only my cat understands. I turn 60 in a few weeks and have zero desire to celebrate - what a joke. I'd rather change my name and move out west where nobody knows me.
I hope you've dumped all the people who have ridiculed you or not taken you seriously. I think you're utterly amazing with everything you've achieved but I do think that everything that you've pushed yourself to do, and are still currently doing, have caused your condition to worsen. I'm not a doctor just an observer of people with CFS (myself included). I wish you well.
My employer works against me instead of with me, I'm expected to do everything to full capacity. I don't have the option to not work or work part time. Here are 2 of my "favorite " reactions from my loved ones..." your imaginary illness" and " your just getting older". After a while of living like this, it makes you want to move to a new town where no one knows you, and just never admit your illness to anyone.
I get what you mean. I am looking for work and having FM has been a huge obstacle in finding something that I can do. I have been applying for jobs I used to be able to do in the past and am upfront with my disabilities and because of that, I have lost jobs. I am a single mom of three so this is very stressful and I find few people other than close family members that understand what I am going through.
Wow!!! This is exactly why I’m looking into going to therapy. Setting boundaries is important and yet others just don’t understand why I can’t make commitments to do things because I truly don’t know how I’m going to feel from one day to the next. For those times when I’ve given in I end up paying for it for days at a time.
Can so relate! And seems those unaffected still aren't pleased, no matter how much quiet suffering in pain, fake smiles, etc. No matter what, it isn't good enuff ~ should've done more, stayed longer, been more friendly, thanked them for invite(!), etc. When the event is over, they get a good night's sleep & hop out of bed, fine & dandy the next day. How nice that must be for them! I can only imagine. It will be no less than 3-4 days B4 I can get up & even move about slowly, won't dress or leave the house & every movement so painful! I will barely wake up to pee & maybe have bowl of cereal before I cannot stay awake any longer & am asleep again! This goes in for days & days. They go back to work the very next day, doing their hair, make-up, dressing, smiling & driving to/from; + socializing & doing their job (no probs) B4 coming home to cook, clean-up & shower to do it all again next day. OMG!! I am tired just telling about it! The SHOWER alone will wipe me out for the entire day ~ that IS the event for the day... will be so sore (!), muscles too achy/tired to dry off; wrap in a big towel & flop down on bed, exhausted, spent! And that's on a good day, not recovering from an event the day prior. They just get on with their life the next day - "no biggie"...(big sigh!) Am glad for them, but that isn't my reality & hasn't been since late 1980's, when in my 30's. No one truly can relate, tho if live with me can maybe understand that it's real. That's all tho. I can barely remember what it was like to wake up, shower/wash hair, get nicely dressed, hair/make-up...& Go somewhere THE SAME DAY! (That's impossible for me; the shower, etc has to be day before -- so that's minimum 2 days where NOTHING else gets done; + min. 3dys after any event to recover, more like 5 dys... & We're talking about 5-7 days GONE! All that to do what? Go to dinner? A BBQ? A friend's wedding? A family B'day celebration maybe, or other holiday?! For healthy people, like I used to be, it's an evening out - nothing more - a fun time for a few hours - "woo-hoo!"🎉 For me, it's stress of trying to get ready, look good & get there...being so tired after a short time of active socializing (& needing to pretend I'm not, for 2 more hrs). I get home & pull off clothes, fall into bed & I am 'out'!! Nothing will get done in my life for about a week, putting me further behind on normal stuff I need to do - cleaning, mail & paperwork, phone calls, etc, etc. All of that, just to hear someone say how "they were disappointed" by something. Or, if it was a great time, with me at my best & enjoyed it, then I hear that... I seemed just fine, nothing wrong & maybe I just need to get out more, maybe lose a few pounds & I'd feel much better. (Screams🤯😖in frustration!) Do they have any idea how bad that makes me feel? It hurts - tho I know they don't mean for it to. We exist in different worlds & only way they'll understand is if they end up with it too. (Rarely do!) Right now, am so far behind that I will NEVER catch up & new things that need doing don't wait until caught up! My house is a mess, laundry not done & I lost track of things bought, that I needed to return & people I owe letters/phone calls to ~ people who will hive up on me & I will lose in my life & miss alot + guilt cuz' I cannot keep up. I had a full & normal life once! I vaguely recall it & did nothing to cause me to lose it. I miss living my life, having the energy to do so. **If anyone here can relate to this 'loss of a once-normal life', these feelings & expectations of others...the difficulty of going to even simple events with friends/family & the costs of doing that, etc... ...Maybe reply with your appropriate emoji faces if too tired for words.(?) Or, maybe I have just turned into a crabby old woman at age 64...??
Thank you this is not just for us but for everyone. Anyone that suffers with chronic illness knows this,it's the rest of the world that needs to understand how we feel. God bless you I agree with you 100% take care, love from Canada.🍁💚💜💙☺
I understand completely, o told my sister after my diagnosis and she said "oh yeah that's the thing that's supposed to be all in my head" so frustrating
Wow i needed this today! What timing. I am in a flare for over a month, I ache from head to toe and even getting dressed hurts. I'm getting pressure to go on an 8 hour car ride for a fun family trip. Staying with relatives for a week, debating if I can do it..wanting to..but i know i really am not up for that...is making me feel like a failure. Of course I want to go if I could I would.
Even now when I relate to what you are saying I still dont want to believe it. I still think their are people that have it worse but do more than I do, I just need to appreciate more and try harder !!!!
I have seen a few of your videos, and I also see all the responses, so I'm not even sure you will see this. But if you do, thank-you! Every time I watch one of your videos, I feel so much better for knowing someone out there understands. I feel as though my family and friends try to understand, but they can not fully understand how 10 minutes ago i was fine, but now I need to lay down, or any other reactions I may have to a situation. Thank-you for putting this information out there and making these videos for people who suffer from these physical disabilities, and their families. Have a great day.
No wonder I isolate . Much less stress. People can be very stressful . I can’t handle expectations . Tell them whatever you have to but don’t feel pressured . It’s only you who pays the price . I slipped back years trying to be somebodies carer , doctors everybody expected it of me . Well great now I need a carer . Don’t let anybody push you to do what you know you can’t do .
I had Chronic Fatigue syndrome when I was in my 30s. It was a relatively " new" disease at the time but I was lucky to find a GP who believed me and helped me. My ex husband told me it was " all in my mind" and to "get over myself". I was suicidal. Eventually I went into remission and take care of myself more.
I have had fibro for over 30 years, I'm now 66. I agree with the person that said they wish they looked as bad as they felt. Over the years I have slowly gained weight due to meds, lack of exercise due to osteo arthritis, pain, and C-PTSD, stress eating etc. I was walking with a cane for years, then à walker and now I'm in a wheelchair. My primary care Dr. tells me, if I lose weight I can walk again, yet OT says I will never walk again. I have people make subtle comments that I would lose weight and feel better if I got up and walked, riding in the wheelchair will only make me heavier. I need hip replacements but they will not do them because of my weight. I had bariatric surgery, the sleave, and I still didn't lose enough to get them done. I was just to the orthopedic surgeon to see about tears in my shoulder muscles, and there are not enough muscle to repair even with donor tissue, the muscles have retracted down so far. Now I am waiting on OT to approve me for an electric wheelchair, which will make it easier to get around and spare my husband who will be 74 this year. I am in a lot of pain, even with a lot of pain killers. Who here thinks I should get up and walk and exercise? I have so many things the matter with this old body it isn't even funny. I'm so sorry to sound so bitter about things, but I think in my brain I should still be able to walk and do things that I could even 10 years ago. In my mind I am only 29 after all. LOL ❤❤ I am tired of people judging me, I wish I had one line to say to them to never do it to me or anyone else ever again. (I don't swear, too bad sometimes lol)
Thank you so much for this video. After years suffering with this exact subject, I started to figure out how to approach the problem with the least amount of anxiety, insecurity, etc. So nice to hear more advice and tips. Bless you.
Exactly. Thank you for your understanding, advocacy, and for standing up for the ME/CFS/fibro community...As we educate ourselves sans the awareness from others, we learn how to obtain/maintain our overall well being and self care. No longer do I/we have to justify anything to anyone regarding this chronic condition. God Bless YOU!
Absolutely true. It doesn't matter how much you explain the difficulties. I agree that good friends push. I don't explain any more. I've stepped aside, built and live a different life.
Dan i did your program and a year of full brain cap neurofeedback...I was very very ill for just a few months but I had severe anxiety, severe fibro, and medium CFS... the recovery took two years to get to 95 percent and Another year to get to 100%. I really appreciate you and your program. Thank you so much.
Thank you for speaking so kindly and with compassion . I am told at times how good I look and there I am feeling so lousy. I have fibro and sometimes just have to say NO. It is hard to be misunderstood and lonely to miss out on things. It adds to the stress of dealing with chronic pain day in and day out, pushing yourself, explaining.... I do not know what I would do with out the Lord . Online audio scriptures are comforting and calming. We need Jesus and His salvation. No more pain in heaven. .
Thank you for posting this. This is excellent advice. It’s a difficult situation to be in but the last thing we need is feeling pressured when we know our limitations.
Going through this right now. Think if I do something everyday it will get better. It doesn't work that way. If I say go to work for two days then run errands on the third day, I know I am done for, at least for the next two days.
I only do difficult things if the payback is worth it eg going for a drive into the countryside which restores my spirit. I am 70 and the neuropathic pain is relentless. I worry about my future. I have no friends left at all. Even my daughter has estranged herself. I have a wonderful hubby and he makes up for all of it. Great video.
God bless you! I was always the care taker and then I became ill after auto accident and cervical surgery. I feel like I made excuses all the time. But I was too hard on myself. Then depression and anxiety creeps in. Thank you for you post. It made a big difference for this 60 yr old thankful woman! Thank you 💞✌🙏
After a while you actually forget why youre a lazy cow who doesnt want to do anything. Thsts how I feel about myself having lived with a narcissist for too long.
So helpful. Thank you. I've lived with it for 32 years now. While it gets easier to manage the disease, it's always hard to manage the expectations of family and friends. What's worst is that they often don't support you when doctors throw their up their hands and blame the patient. Our medical system desperately needs to evolve. When a doctor doesn't know the answer, they should simply say that. Sadly, family and friends often play into the blame created by doctors. And they often are left thinking that it's just in our head and we just need to DO something to snap out of it when that's exactly the opposite of what we need.
This is really beautiful thank you. Such a helpful message and reminder. I am only beginning to get into the rhythm of respecting myself and stepping back from things that worsen my CFS and listening to this made me feel so much stronger and calmer and I look forward to trying to put these ideas into practice.
Thank you so much for this video, it is hugely helpful to me. I don't like admitting to people other than those closest to me that I have CFS/fibromyalgia in case I'm misunderstood or seen to be a complainer as I "look normal" but I now realise its going to be better if I do, a relief in fact to stop pretending I'm ok and can do more than I actually can without suffering a setback.
I'm so pleased I came across your channel. You explain things so clearly. When I was working in an office the other girls would arrange drinks or meals after work sometimes and I always said I couldn't make it. One day they were arranging a meal and Bingo and one of them said "no good asking Chris, she won't come". So I said I would join them this time. As we walked into the Bingo hall, I had never been in before, I felt a panic attack starting. The place was much bigger than I thought. We went to buy a coffee and get our cards and I was shaking so much I couldn't carry my coffee so one of the girls helped me and got me to a seat. I was shaking and crying for about 5 minutes - I felt awful - it's one of the worse panic attacks I've had. The other girls looked shocked 😅 When they were planning another night out I said "I don't suppose you'll mind if I can't come." 😅
I too have this issue but less now. My very supportive husband was worried because I wasn't going to one swimming class. I gently thanked him and told him. It is not encouragement needed to go to something you love. It is an encouragement needed to be wise about my decision. Not easy for them either. I also say, you just have to trust that I know what level I am at today.
This is such incredibly wise & thoughtful advice. People need to hear it. Isn’t is wonderful how much we learn about ourselves! Then we can choose & decide to live better, smarter lives.👍🏽👍🏽Blessings & peace!✨
I’ve had fibromyalgia for about 40 years . Also endometriosis, spondylolesthesis and Parkinson’s disease, which was recently diagnose. My tremors are very bad. I am so sick of being sick. My family have called me a hypochondriac for years.
I have fibromyalgia and I have never heard anyone explain it so clearly and informative and perciseley . Thank you please keep making these videos. I was doing that with my Dr. I gave up and stop telling her anything. I would just say same old same old. Thank you 😊
I am a massage therapist and I've been told I can't really have fibro, but I love what I do and I have to manage myself and my time so that I can keep doing it. I think the close people in my life understand, but they forget over time because most of them don't see what I'm doing daily to manage the condition. They mostly see me when I am in good shape, because I've planned ahead. Then when they see me on a bad day, they're like, "whoa that's still a problem for you?" Yeah, it is. But I'll take how they are unable to notice most days as proof I'm actually doing a bang up job these days managing my fibro symptoms!
I haven't been diagnosed with Chronic Fatigue Syndrome. But I do believe it is behind all my health problems. Three years ago, I was under enormous stress effecting every aspect of my life. I began feeling myself unable to do things I enjoyed and could easily do, fatigued and cold a lot. I was an avid Power Walker, multi tasked and had excess energy. Now after doing my laundry at laundromat I need a two hour nap. The seasonal hay fever has turned into being allergic to just about everything indoor/outdoor. My medicines grow in size and I have two allergy shots a week. . I have chronic upper respiratory problems and if I over do it I get postural BP. Due to stress from allergies and Vertigo, I have had Ventricular Tachycardia. I don't work anymore. I safeguard myself from triggers and allocate increments of time to do things I could do consecutively. Watching your video made me feel someone understands my limitations and frustration. Never did I see my to do list shrink so far down in size. There are days I feel so exhausted after showering and styling hair. Days I just can't be around a number of family members. Is there remissions, do you ever regain vitality?
Yes, I play competitive sport for many hours per week and often swim 20 or 30 lengths. You will other people describe this kind of thing in their recovery interviews!
Yes, there is remission and even full healing. The main thing that helped heal me is to get rid of stressors. When I was happier I felt better. I had so many symptoms that went along with my CFS and I tried pretty much everything to alleviate them but none of them really worked. I even remember nodding off in the shower and on the loo. But as soon as I started to accept my (strange) life, focus on only the absolute important things in my life and only give my energy to them (my husband, our son and my elderly parents who lived with us), I started to feel happier (plus I had an excellent diet) and slowly, slowly I started to recover.
On a practical level I would adopt the ‘spoons’ explanation to create healthy boundaries for yourselves. If people understand and accept this description there is clear simple communication. People who have never had a chronic illness are not going to understand and all we can do is ask them to accept it and trust us. I now have friends who ask me how my spoons are and this is so much easier, because often when I am out of spoons I feel ok within myself, I have simply hit a wall of zero energy. I have learned not to feel depressed or frightened at being spoon less and to shut down until I am restored. So within myself I’m accepting but physically have to withdraw for a while. Getting rid of the fear and panic is the most important thing. Good luck!
I was seeing a phycologist and was finding it stressful when people were coming up with their own diagnosis and treatments, when there were days family/friends would call, I’d let it go to voice mail and txt them back. “ today is not a great day and I’m not up to talking. Thank you for reaching out. It means more than you know just how much you care C xx” It shows respect for yourself and them.
Thank you for doing this video with compassion and care in your voice, it really helps me to know that my daily/nightly struggles are real and others with fibromyalgia have similar problems
It's absolutely real for sure - we couldn't all be making up the same stuff, right!? Yes, the recovery interviews go into a lot of detail, I am sure you will hear your experience echoed many times. Have you watched them yet?
The pain is awful but dealing with the people comments around are as bad as the pain and it is the frustration, I'm 😢 for pain and frustration for feeling alone with this illness IT IS THAT I DONT WANT TO DO SOMETHING IT IS THAT I CAN'T....PAIN DIDN'T ALLOW ME to rest well, to move freedomly, to have a normal active life 😢
You are a blessing to all of us who suffer fron CFS and lack understanding from our family members. Your channel gives us the opportunity to understand this complicated syndrom and find ways to ease our pain and suffering.
I am 76 years old and have had fibro/cfs since I was 50 yr old. This winter has been exceptionally hard for me plus the big changes in the weather hasn't helped. I've worked with it to the best of my knowledge. It seems to have gotten worse. I totally relate to the frustration that you have felt. I also have felt guilty when I feel that I can't do things. Before this when I really felt as good as possible I usually did too much and got myself into problems. I honestly do not know when to push myself a little and when to slow down. I am so glad to hear that you understand. I knew it was complicated and I have pushed on to find different ways of help.
In my 60's and have had fibro and cfs for most of my life. I moved to a mild subtropical climate 35 years ago. However, I think our bodies don't deal with changes in temperature. Even a drop or increase of a couple of degrees is painful to me. 😢
I must be odd. I have moderate ME/CFS and when I don’t want to do something, I literally just say “no thank you, not today.” No discussion, it’s more stressful to explain and justify than to just say no. But to be fair my friends don’t hassle me, my family are supportive (the ones that aren’t I cut out last year) and I have a good GP. one thing you learn with this illness is how to streamline! And you only have to say NO to people once or twice, and they soon learn that when you say no, you mean no. You have to stand up for yourself, because people will take the piss, and try to jolly you on with comments like “well if you got out of your wheelchair and walked more you’d feel better.” (Yep, that’s a real comment.) I say nothing, wheel myself away. I need my time and energy for recovery. You have to learn to be very strong with this disease.
This is very valid, because it's better to make the choice of making space to get well, rather than keep pleasing other people until your body packs up, and then you are forced to. I've learned/ learning this from personal experience and I love the way you direct us into putting ourselves in the other person's shoes, to understand where they're coming from.. that is something very powerful to learn and is free-ing in itself. Thank you Dan.
I have always been introverted and although I enjoy certain company for a short time, it exhausts me. Having Fibro exacerbates the exhaustion. My husband is the only person who not only is the one person who truly understands how fibro effects me, and I also don't get the same exhaustion being with him. I was a marine for 11 years before being medically retired for fibro so I don't tell many ppl since they don't understand and in my more compassionate moments, I don't blame them, I look fine, just tired. I've had doctors and nurses treat me like a liar, hypochondriac all of it. My mother won't stop suggesting "cures" and I've tried them all and it's so demoralizing to get a glimmer of hope, just to realize the "cure" doesn't work for me. I have a disabled placard and only use it when it is really painful. I look fairly young so I have been yelled at, accused of lying, accused of using someone else's placard, you name it and in some ways that is not only emotionally painful, but on bad days, physically painful. My own son doesn't understand because he believes what his father, my ex husband tells him: that it can't be as bad as I say. I am so desperate to find a way for my son to understand so he doesn't see me as lazy, lying, etc. So many times I wish my pain was visible. Friends hug me and when I ask not to be due to pain, even their light hugs hurt and I know they mean well, I'm just tired and in pain and I'm so tired of being tired. Sorry for bitching, I'm in currently in a flare up and I'm just venting. I have so much to be grateful for, I just need to focus on that.
Perhaps start being more open with your pain instead of hiding it, then when they ask, explain that it is constant and never goes away, there are just bad days and better days. You have to ration your energy and yes, today isn't a great day. I understand how hard it is when you are used to "coping and managing" . 🐄💜
I completely understand. You're in awful pain and want understanding and compassion. Please try to send clips like this one to your friends and family. Find other good clips that validate your experience with this and educate them. Then its up to them. I wish you better health love and hope...❤
I worked hard at a job until I couldn't get past the pain. 22 years of pain. I told my boss hey my back hurts. He responded I hate to see you when you get old. People never understand how you feel. Only God understands. I speak to him and ask him for strength to crawl out of bed every day. He loves me and someday I will get to go home. May God always bless you and keep you in his care for without him it is only emptiness.
I really enjoy the way you speak, it's so calm and encouraging. Thank you for sharing your experiance. I have struggles explaining people from my environment how bad I feel due to horrible pains and that I just can not live with this horrible conditions. Due to the lack of sleep and horribly paintful nights, I feel sooo frustrated and nervous. I have troubles in solving very easy tasks. I can not concentrate, I am sleepy all the time! The thruth is - all my fybro problems started becoming mom of multiples. Handling huge physical and mental challenges, I felt totally exausted. Suddenly, I felt my bones and joints burning 24/7. Anyway, one more time, thank you for your videos, you issue something positive and calming. Regards!
My fibro moved in after I was diagnosed with MDD (unfortunately, treatment resistant for 30 years) & GAD. It's as if depression eats away at your body. A snowball rolling downhill effect. Things fall apart the longer your depressed. Ive been accused of being a hypochondriac. And YES ... I wanted to throat punch them. Who ... in their right mind would want to live like this, if it weren't true? I've lost family & friends too. They fall by the wayside cuz they don't know how to help, or what to say. So, they take the easy route out of your life. Heartbreaking. Ive fired so many doctors in order to gather the GREAT team of specialists I currently have. Yeah. There's plenty of doctors that just want the "easy" patients. It takes a dedicated doctor, that's up for the challenge of taking on a case like mine. I would like to encourage people to be their own best advocate! YOU know your body. Don't let lazy doctors gaslight you into believing "positive thinking" is all it takes. NO! We're in REAL pain ... mentally & physically! Do not stay with a doctor that can't (or won't) help you. It's a waste of precious time! It breaks my heart to the core knowing others are suffering with a laundry list of diagnoses ... just like me. 😢 It just tears me up inside. Here's praying for ALL of us! Cuz this fight aint for wimps❤
Nailed it! I've had Fibro for over 25 years, and I've had to explain things to family members over and over. My sister-in-law told me that I really just need to stretch more in the morning..This would help me with my Fibromyalgia. I wanted to punch her in the face.
Sorry, this comment made me chuckle. If I’d only counted the times people have said these kind of things to me. I’m now 72, was diagnosed at 50, know I’ve had it all my life. The people I’ve wanted to punch. I look ok but I look mad all the time. It’s holding in the pain showing on my face.
Same, same. So far I haven’t punched anyone but I’ve been so close! 👌🏻
I've had people ask me if im okay because I look like im in pain. 😂 Well, I AM in pain, but I certainly don't want to LOOK like i am.
Aaahhhh so many people I've wanted to punch in the face. Luckily the pain and fatigue prevents me from throwing a punch!
Hi Melissa! Hahaha! I think we are related! Your comment about punching your sisterinlaw made me laugh!! I've got one of those sisterinlaws! I'm suffering today. I've had this shit since 2008. I'm looking for an answer. None yet!
It is such a gift when someone accepts you for where you are and what you have to offer, even if you feel like you only have a little to offer.
I'm a retired healthcare professional with fibro for 20÷ years. Family and friends still don't get it. That's OK, I set my own boundaries and live within them. My acceptance of my limitations was much harder than wanting or needing the acceptance/understanding of others. I found you get more compassion and support if you tell someone you broke a finger nail than if you tell them you have fibromyalgia. Keeping a sense of humor helps.
When I was first diagnosed in my 20's, most doctors didn't believe in Fibromyalgia . Was very hard to get a diagnosis. I have had to explain over and over most of my life. Now that I am 70 yrs. and visibly struggling from other illness, most just accept it when I say "I can't do that today" or "I'm not up to it". Younger folk still have the trouble with friends and family not accepting that you can't participate in something or that you stay for shorter periods. The "just do this or that", the feeling from others that they believe you are "faking it" or just trying to "get attention" or the many other cruel (even if they are not meant to be) comments leave you isolating yourself from others so as not to deal with it. I understand.
Hello did the pain grow year by year? I mean u felt more pain after 5 or 10 tears etc?
This video is for anyone with chronic illness, or anyone who knows anyone with a chronic illness!
Thank you so much sir!
My sister used to say “ All you need to do is get out and exercise more!” It wasn’t until I ended up with cancer, that she finally shut her mouth! I was exposed to pesticides years ago and I have suffered from CFS and fibromyalgia for some 40 plus years….just so tired so much of my life and in pain so much if the time….now with cancer this past 12 years…it is just so much worse….tired of making excuses for why I don’t feel up to doing things with others…thank you for this video….many are just ignorant ….they don’t understand….I make my choices now and … keep my associations limited to only a few who understand…thanks again….
Yes, very often people also think the effects of these conditions are in fact the cause of it. Youre ill because you dont excercise enough.
My mum's best friend was also exposed to pesticides and developed CFS/FM not long after. This was when she was in her 40's. She is now 92 and is relapsing with her conditions. Her daughter had it when she was a school girl back in the late 70's. I had CFS (not FM) 15 yrs ago and was "out of it" for approx 3-4 years and still have to watch myself now. My brother also had it. I firmly believe it's hereditary as I've heard other cases of it running in families. I'm so sorry you only got "understanding" when you had a "real" diagnosis of your cancer. Typical isn't it? Not only do we have to deal with an extremely strange and debilitating condition but also we have to deal with people who just refuse to understand.
Good advice, thank you. I often wish that I look as bad as I feel. Most of my explanations are met with something like, 'But you don't look sick. Are you sure you're not exaggerating your symptoms?' Or I get told, 'You just need more sleep. Are you sure you don't simply need more vitamins?' Guys, I live with a complex and little-understood chronic illness. There are thousands of people like me. If something as easy as vitamins could cure it, no one would have it at all.
Absolutely - and I think it's fair to say there are millions like you!
Rowan Hagen
isnt it amazing that people seem to assume we haven’t tried to cure ourselves? Or that we enjoy being sick?
People can say the most idiotic things!!
Rowan, your comment is spot on. Made me cry.. this is really hard! People who can't feel/live this just can't understand. My son can be so ugly..It's terribly painful.
I am living a life of complete hell from chronic invisible illness😢😢😢
So True !
People who don’t have it... don’t understand..... they say “you don’t look sick, you look amazing”
Or they think I’m arrogant and bitchy for avoiding social situations.
It’s already tiring suffering from fibromyalgia without having to constantly explain myself.
This condition should be spoken about MORE.
Thank you for this video 🙏❤️🙏
I feel ya awful I'm fed up of having to tell people I'm not going here, only to be sighed at or looked at as if it's that bad!
Like you say it's already draining then having to explain yourself over and over again
And not being taken seriously, is another hurtful blow.. I've had fibromyalgia 16 yrs
And I wouldn't wish it on anybody
Yep, my family thinks I'm a bitch for not spending more time with them. I don't care anymore
@@despicabledavidshort3806 Yep, I'm at that same point. It's despair.
Estoy aprendiendo a decir cuando me preguntan como me siento, les digo, "mejor hablemos de algo mas para distraer el dolor" 😢
Yes! 💯
this worked for me up to the 10 minute point. my parents were narcissistic, and i tended to attract the same in friends. Family is gone, friends are gone EXCEPT for the ones that understand that pressure and disappointment will actually trigger the illness.
You are so right - we put pressure on ourselves because we do want to do the things we used to do and this stress adds to our condition.
Thanks for this inspiring message It really helped!
me too. I was excited for this message until the part about people caring and that is why they nudge you. people not respecting boundaries, pushing unsolicited advice and questioning my functioning level don't have my best interest at heart and in fact have shown hostile behavior because they can't manipulate or control me in other words they need to feel superior and that is not supporting someone. I dont have to understand someone to respect their boundaries.
I've had fibromyalgia and CFS for over 36 years, along with extreme back and neck problems, sciatica,etc, and having a malabsorption problem, and these are just the highlights. I'm now very much alone and have been screwed over by numerous people, especially my family. But I'd rather be alone than to continue dealing with the abuse from others.
I have a sweet lady that I've been talking to for seven years online and she deals with Fibro. I saw his video on Fibro last week on here and realized i didn't truly understand what she deals. So i watched that one and now i'm gonna keep watching so i can support her and understand what she is dealing with. Thanks for the videos.
THANK YOU, THANK YOU, THANK YOU, You supporting your friend to start with is worth it's weight in gold but to actually WANT to find out more, so that you can truly support her is something that all of us wish someone would do for us. Sorry, i don't know you or your friend but to have a real friend like yourself is a gift that i know she will really treasure. She doesn't have to explain things or feel like she is wasting her breath because no one understands or really wants to know anyway. I wish there were a few more friends like you in this painful world
Thank you.. We need more friends like you! 💓
Thank you for being such a good friend to her! For those of us suffering from an "invisible" yet debilitating chronic illness, people like you are few and far between. Bless you.
Thank you for thinking outside the box and engage with the part of yourself that acknowledge learning is the only way and, in order to learn, you need the will and the courage to accept many of your previous ideas about a topic (fibro in this case) unrelated to your personal life might be very different than you thought. Good for you!
It's pretty bad when your partner thinks you are just faking because you don't want loud tv or bright lights . Sometimes I go in the room to read because he is too noisy ,not because I don't love him, because he refuses hearing aids & my fibro become triggered & I flew when he has thing so loud evens hurts my ears with plugs in.
I have had fibromyalgia for years and I am a housekeeper. I work for myself cleaning residential homes but I have been struggling so very much to make it through one house and I use to do 2 a day. I really couldn’t figure out why bright lights and loud places plus talking a lot on the phone bothers me so much, now I understand why! I never thought it could be from fibromyalgia. Fibromyalgia and menopause have destroyed so much of who I am. This video makes me feel better knowing someone else understands! Thank you!
When you tell a family member/friend you have FMS, that'😻s all you should have to say. If they care about you, they should find out about it and act accordingly. Many think I don't care because I had to change my life. Too bad! My house isn't very clean, I stay home much of the time, and respond to activities at the last minute. I have just learned to respond to my 30 years of disability, life is what it can be!
I'm learning many things & seeing myself in these videos. I tell my Mom "Fibro Day" when I'm on the severe end of the pain spectrum. I also tell her "good day" when I feel in control & "I'm not sure" when I cannot focus. We're working on housework together now instead of separate.
Sometimes I just can't spit the words out and I feel like a dummy. The brain fog is horrible. Nobody but nobody understands what we are going through. I am a Catholic Christian love my Jesus sometimes I think that should be enough but that doesn't help my condition I pray a lot I guess my looking forward to heaven is better than living on this earth with this pain.
I have had ME/CFS for 35 years and I’ve heard and been through it all. The disbelief and skepticism of others, including the medical establishment, the loss of friends because one can’t “ “keep up” with social life, loss of income, etc. etc.
The advice to stop explaining is excellent. I’ve learned this and now simply say “ I appreciate you wanting me to participate. I’ll look forward to doing so another time.” If someone persists I just stop talking and separate from them. We don’t need the stress.
We don’t need anyone else’s approval, acceptance, or permission to take care of ourselves. “ There’s nothing more enjoyable than cancelled plans”!! 😊
What is ME/CFS AND POTS? I have Chronic Fatigue and Fibromyalgia!
I've too have suffered CFS/ME for 28 years, it wrecked a professional sporting career at age 26 and also any advancement in my chosen working profession. At times I have almost given up but for raising a daughter by myself as a solo father in the early days. Chronic pain has been a major part of my problems along with bone crushing fatigue. I have about 2 good hours in me per day. Shattered is not enough of a word. Penelope I know *exactly how you feel* Much love and care from NSW Australia.
I have so much empathy with you all. As a 38 year sufferer I would say never give up hope. The last few years I am gradually improving and at a progressively faster rate.
I got so fed up with explaining to others. Now I don’t bother, and there has been no adverse reaction. I think this has helped.?
A few months ago I went 2 stops on a bus. I crashed out afterwards for a few hours, not weeks like before. I don’t know why I have improved, but am so happy to have done so.
Be kind to yourselves and hang on in there
@deborahmaldonado3992Thats interesting about Magnesium, as I read another person suffering from ME said he'd gotten much better with Electrolytes like Ultima daily. I tried that and I was actually able to get out of Bed!
It was incredible...a simple thing like that making me able to take Showers and not suffer dysautonomia. Could not believe it. With that experience I discovered taking 35,000 IU of Vit D and after a few days I noticed such a difference. Within a few weeks I was actually able to go outside 😭
Makes sense as most if us don't get the Sun soak being Indoors so much after onset of Illness.
(This is not Medical Advice. Always speak with your Doctor if this is right for you)
@@tinamcmichael5902Since your comment was 3 years ago, I hope you've googled it by now! 😅
Yes I’ve endured the loss of friends because I’ve had to cancel so many times. Or be late because I move in neutral or first instead of fifth gear now. Yes, after 33 years I’ve endured the frustration of many clueless doctors. Now, it feels so good to just go lie down when I have to and not feel guilty. I don’t have a social life anymore. I don’t “entertain” and my husband finally understands that “today” I can’t go to wherever we planned to go. It has taken me 20 or so years to get to this place of freedom. I’m not glad that I had to. I would rather have my old, do-anything-for-anyone and do-anything-I-want-to energetic life. But that is no longer my reality. I just hate the thought that anyone thinks I’m a hypochondriac, but I can’t help that. I accept me for who I am and I love myself. I am not lazy. I play catch up on my good days and over do it. I love to work and go and do. Don’t we all? If someone doesn’t know me or understand the real me, well that’s ok. I know me. And that’s enough. Once I learned how to say that little two-letter word “no”, I was set free!
Good for you - always put yourself first.
Thank you so much for sharing your wisdom. It's taken me 44 years to begin to reach the stage of guilt-free freedom you describe. I wish I'd understood this decades ago but I'm so grateful to be where I am now.
Feel the same. Wish you the best. Stay safe during covid
I AGREE 100%
Great explanation of my life! How did you know!
Really helpful and much needed. I've had ME/CFS over 40 years and I've had to forgive those people in the medical profession who've caused more problems through their negligence, arrogance and plain ignorance. I'm burned out by not keeping these boundaries so I guess every day is a new start. Thank you so much for this. I have now subscribed!
Yes, there comes a point where you just have to let it all go ...
Takes too much energy to hold on to the emotional pain of what we endured in the past.
This is sad but true , I've had me/cfs & fibromyalgia for 12 years now . I tried to tell everyone of my limits and to remind me when I was doing to much sadly it fell on deaf ears . I know have tried to stop explaining myself and nobody understands , then that causes me to feel guilty . When you've been sick for a long time nobody wants to know . Pure ignorance . It has made me slightly bitter .
Made me slightly bitter too! :)
Lorraine Deacons I feel the same so hard 😔 this illness is such a mental challenge esp after so many years
I've given up with no one really understanding.I depend on my one fibromyalgia support group & my doctor 😢
Boy! Same here! 🙏
@@CFSUnravelled1 Me three. 🌛
sadly one has to have ME/CFS to fully understand what the patients go through
I was so blessed to have been recommended a super Dr who specialises in Adrenal fatigue and has ME himself. One of the first things he stressed was to go for grief counselling to cope with the loss of my "normal" health. Second was to never explain more than once. He said I didnt have the energy to waste and if they really cared or loved me they would research for themselves. Wow. Hard to do, but its getting easier.
"Not trying to live up to someone else's (imaginary) standards."
The only thing you CAN control is the kindness and understanding that you show to yourself.
Amen. ❤
I Heard the Message with tears in my eyes. So true and important ....which I would have learnd IT earlier in my 35 years of struggeling with CFS and the " well ment advices " of other people. ! Thank you for these helpful words !
I have had fibromyalgia for years and other problems ,it helps to hear that you're not alone in our struggles
My husband has been living with fibromyalgia for 12 years. I'm so tired/sick of explaining what is going on with him. Everyone looks at me as if I'm making it up. These videos have really helped me understand what he is going through. Thank you. 😊
I understand, my daughter (32) has had cfs and fibromyalgia since she was 14. Now has gastritis and pots. She never complains but she is bedridden mostly only able to get up into her wheelchair to get to the bathroom and then we eat a meal about 7pm and she goes back to bed. 22 hrs in bed every day, I have long covid so I can feel the fatigue she has to a lesser degree. I always say even though I live with her and see the toll it takes on a vibrant, clever, wonderful woman that she is, I still don’t know how it feels. We are ok together on our own but any interaction with others is exhausting.
Watching this because I’m in bed with viral gastro and a huge flare up after pushing myself to multiple events. Single parenting and working is enough. Needed to hear this. Great video thank you.
I had to work out what and who mattered when I was really bad with my CFS. Your children (family) and your work are enough. Nothing else matters when you have CFS. We have to learn to let everything else "go".
I have had CFS that eventually morphed into fibromyalgia starting about 1981 or 1982. Life has been far less than par for too long. Anything that could stop the pain, brain fog, memory problems, neuralgias, mood swings, depression, etc., would be a miracle. I have subscribed and will pay attention. Being 60 years old and not having really lived life is awful.
Patricia Roysdon :'( me too.
I'm only 4-5 years down the line, but I am adamant that I am not going to live with this. I hope you begin to figure things out soon. Sending peace.
Patricia Roysdon
It is awful Patricia. No answers...Just trying to survive it.
I hear you Patricia. ..I got ill in 1978 aged 14....I wasn't diagnosed for anorher 14 years and even then my GP refused to believe it. .sent me for counselling which I couldn't get to. What no one really understands that you haven't been able to grow up normally and don't know what Normal is! What I called tired others call exhaustion or migraine or flu symptoms.
You can't have a career as you have to keep demoting yourself and live basically on the bread line.
I had to finish work in 2011 after divorce from a 2 year marriage finally wiped me out, i was homeless etc and found the Optimum Health Clinic but it was too expensive to carry on with it.
It has answered many questions and I know so much more than most doctors ...they refuse to accept that it's adrenal fatigue. .thyroid is normal etc. Why have you been so ill for 40 years despite being so strong otherwise? Why can't I get well? Finally found out that I have been the victim of Narcissistic Abuse since childhood and that it's not my fault that I attract violent men. When you live in fear and constant fight or flight is it any wonder that you can't get well? And once you are safe you get all the flash backs and feel a failure for not being over it emotionally.
This year am done explaining to people. ..am going to have fun doing art and I only take supplements when my body tells me too. Am lucky to have met some good people who give me Emmett or Reiki...etc..
You go thru do many alternative therapies and finding yourself and it's a healing journey that never seems to end. ..it's so hard to finally live for myself and think Well when you have to Pace. ..which is damn near impossible. ..
But never give up. ..the answer is within you and I ...and I tell you what. ..we should be proud you and I for coping with all the pain, gut problems and brain not working well. ..etc etc and not having lived or met milestones others take for granted like having a family or going on holiday. We are Strong and still here. I think we need to wear this like a Medal... and we will get well or perhaps it's better to say 'I am recovering' ..Cos we are in small ways..each day. Don't give up..sending you love and hugs and God bless.
Mandy G xxxxx💜Thank You
He's literally telling me my life.
To understand this, you need to be a sufferer and a expert. It took me 7 years to figure all of this, and get diagnosed and 7 more years to achieve expertise. I have a overactive immune system, mcas. Fibromyalgia and CFS are comorbidities of mcas. I have multiple comorbidities. It is very difficult to explain multi system polymorbidity to anyone, even physician aren’t in the know about inflammatory diseases or rare autoimmune disorders. Doctors don’t know what to test for or are unwilling to let the patient educate them. Medical journals in India have better information than American publications. I was diagnosed by a immunologist/oncologist. I’m glad I got to the right doctor.
No one ever told exactly what I feel and how people react just like you are saying. I doubt myself and my tiredness and my real pains... Thank you very much!
Thank you for supporting us Dr. and helping others understand. What has helped me some is magnesium before bed, reflexology foot mat, roller foot massager and KSM treatment has helped a lot. We have to take one day at a time. 🙏💪
Thank you for the very helpful video❤ I miss someone to talk about my difficulties in life. I have diabetes type 1 for ten years, long covid symptoms since 1.5 year, my vestibulair nerve was damaged by covid and made me develop chronic fatigue problems. I was allready quite sick from diabetes because I could not get the right treatment. I now start to feel isolated and distanced from friends. It takes too long for them and they find it irritating that I am so tired all the time and can't come to their meetings. They are really energetic and never had something happen to their health. They don't understand. My therapist also does not understand, she says I just need more confidence and I can work. But I'm crashing so hard I can't even get out of bed after short activities. I try to pace myself more now. I keep hope. Last week I wanted to try and be with my friends for a day and I'm still suffering from adjusting myself too much. I'm starting to think I'd rather be misunderstood and possibly left than to live my life in the people pleasing mode, if the price is so high. I hope my friends can be patient with me, but I'm not sure. I am going to listen to my body better and respect it more, even if others don't.
It is great to hear that others are in the same situation than me when our close people affecting us more and that you understand our situation, that really help because close people don't understand when you are looking for appeareance healthy but you are not healthy and didn't realized that you are pushing yourself too much to do your best and paying the consecuence of your efford with painful nights and days😢
This is so so true....The only people that understand fibromalgia is the people who have fibromalgia, and they are learning more about fibro on a daily basis......Thank you......
Thank you for your quick response to my comment on the other video. You are the second person I have heard (& both just recently) who has spoken about self kindness. I had never heard the term earlier & I find it resonates more with me than the term self love. That term has always struck me a bit weird. I can get behind the concept of self kindness more. Again thank you for your response & for suggesting this video.
As an FMS person for 30 years now I just do whatever I want to do at any given time...it really depends on the circumstances. The thing is... opting out or opting in is a choice for everyone regardless of whether they have a chronic illness or not...get on with life in your own way 😊
A very sensible response. Love it.
So very true. Unless someone has symptoms like Fibromyalgia, etc., they cannot possibly know how we feel. Thank you for this video! No one truly knows how we feel but I would hope they would have empathy for us. 🙏
Give myself the respect i deserve is the key!! " Not to wait for other's to do so. And especialy not to dwell on what they might think of you. "Live and let live!"
"Be true and kind to yourself and don't wait on other to do so!"
Thank you for including sensory stimuli in this explanation. It’s really hard to explain to others how bright lights, noise, busy environments and even listening to conversations are so so exhausting. Unfortunately this is something that those “professionals” who make decisions for disability allowance still discredit and tell you “those things don’t impact your life” (why they think they know better idk??). It’s really disheartening
i was VERY active and social and a happy workaholic before i got hit out of nowhere with lupus n fibro n a few other lovely autoimmune diseases....what a shock to all of a sudden living such a limited life and esp the shock of how rude and ignorant even family can be, so dismissive, and i cannot stand when they use how good i LOOK to explain WHY i SHOULD be doing everything as before!!! its exhausting! and demoralizing. like not even my own mother takes the few minutes it would take to look up even one of my diagnosed illnesses and maybe show a bit of compassion, smh. mind boggling! i was an RN and my entire family n most friends are in the medical field so you would THINK they would have some sort of knowledge, common sense, or at the very least some motivation to try and understand but hey, ppl are surprisingly self centered for the most part iv learned so i just had to start working for myself, for MY health, and trust me im not used to saying NO to ppl esp re fun things like parties, trips, shopping, etc!!! but on my "good" days, or hours, i tend to way overdue it and then i physically pay big time for weeks or months. so after a decade of mistakes i now simply say no and listen to my body. it sucks though. it truly does! i feel like a hundred yr old woman and it makes me feel ashamed and weirdly guilty. iv dropped soooo many friends, dont socialize online even, just lead such an isolated life now. im not enjoying that but its what i need to do to avoid the constant criticisms and accusations. i also no longer see drs...theres no need cuz they cannot do anything and im allergic to all meds so whats the point.. tho thats actually a blessing financially lol👍 im rambling, sorry if anyone actually reads this. just....chin up all you fibro, lupus, cf, ms etc warriors...enjoy as much of life as you can and get close to God, He is SUCH a wonderful God and this life is fleeting, soooo much to look forward to in our next eternal one, praise God for His love, mercy, grace, and deliverance, His promises are true! one of my fav bible verses, Isaiah 46:4 "I am He, I am He Who will sustain you. I have made you and I will carry you. I will sustain you and I will rescue you". also i love in IICor 12:9 where Jesus said, "for my grace is sufficient for thee for My power is made perfect in weakness".🙌 blessings to all of you invisible but much loved ppl out there...sending you all big mental hugs🤗
Fibromyalgia is so F'n painful...i go to sleep in pain...i wake up in pain...everyday , all day...10 years..i am so paying attention to this man.
Wow you sleep? I get about 2 hours a night ,spend all day exhausted then midnight comes and I am more awake then I have been all day ,then if I sleep in ( because I've gone to sleep at 5am) I feel guilty and if my husband is around he is very good at making me feel that way ,I have 3 different types of arthritis and fibro and a lot of other bits and bobs going on with my health and I'm a career for my son so yes it can be hard , about a week ago I was house bound for about 10 days, I do find that the best thing I can do is pace myself,. If I go out one day see if I can stay in the next two to recover ,and on good days it is hard not to push yourself just remember that you will pay for it
for the next few days ,so just take it easy ,
Debbie Cicalese I have had Fibro since 1981, I'm now 68 yrs old. My wife is very understanding about my pain. If you don't have a support group helper spouse it is very difficult indeed. As I get older my pain gets worse I also have several bulging discs. I understand all your pain I'm so sorry if I didn't have my wife I don't think I'd be alive right now. My daughter died 10 years ago she had fibro as well. I have a lot of friends that are very supportive because they know someone that has fibro and others that have died with fibro Etc. The only thing I can suggest is to join a support group surround yourself by positive things people situations Etc. I usually sleep in the recliner because I can't sleep in the bed usually because of my back. If you have any questions go ahead and send them to me everyone is different. Please take care sincerely Arnold Bourbon Amaral 👴💏🌹🌎💝
Did you get an MRI w/contrast dye prior to getting FM?
@@arnoldamaral7406 did you get an MRI w/contrast prior to getting FM?
I love the kindness and empathy advised and coming through in this talk: good stuff!
Not understood
I stopped explaining myself to people who don't seem to want to understand what the silent pain is like. My family have been very supportive and my mother went as far as to do research to understand why sometimes I don't want a hug or to be touched because it hurts.
People’s comments are so dismissive. If I couldn’t walk and needed a wheelchair, they wouldn’t be saying, “c’mon you can walk, get up!”. Thanks for the message, it came at such an opportune time. I will try!
I have struggled with CFS and Fibromyalgia for about 16 years and it´s only for the last 7 years I´ve been kind enough to myself and say NO to things I can´t do or that just pressures me too much. My husband is wise enough to understand, without commenting, when I want to go home early from a party or other events. I always say - Now I´m tired and want to go home. And that´s it. No more , no less. We received an invitation for a big birthday party some time ago. I was so glad that she invited us, but there´s no way I could manage to go. But I was so glad to be invited, I simply told my friend that I was so GLAD to get invited but I can´t come because of all noise and talking e.t.c. Her answer: -She knew I probably couldn´t come, but wanted to give me the opportunity to say yes or no. I only explain to people when I find it important or worth it. Otherwise I don´t care of what they think or might say. Thank you so much for this video and you inspiration.☺🤗
Thank you! I have started missing large family get together especially if certain in-laws are there that don’t particularly like me. There was a gathering for my Great-grandson’s 16th birthday. It lasted 5 hours in the hot sun. I stayed home. I missed my Grandson’s wedding two summers ago. Much longer time frame outside and again in the very hot sun. I really missed going to both but could not handle someone having to drive me home early when I feel ill, taking them away from the wedding. So I don’t go. I know many don’t understand but I have to do this to avoid a bad flare. I have had fibromyalgia for 32 years now. Mine started from a severe staphylococcus infection following surgery.
Thank you for this video. I was enlightened by it. I also needed the validation. 🇨🇦👏🏻👏🏻👏🏻👏🏻👏🏻❤
I needed this today. I'm crying...
Sending you some hugs! Make sure you always do one nice thing for yourself everyday.
I decided in my lifelong suffering depression...that its going to be there ...choose to understand it .i tell myself that.thats its still a good day even when im sad.
I think most of us have been there ,I'm sending you a hug from London .
Sweetheart, you are not alone. I am in the same situation, but you know what? Now I’ve found some hobbies which helps a lot, for exsample mandalas and zentangles...it is so relaxing, figure out what could be the most relaxicing thing for you, just try.. I wish you all my best 😘😘😘😘
You’re not alone, I cry too. It’s tough to live this way. Do the best you can, that’s all you can do. Gabapentin has been the only thing that keeps me sane, I’ve tried everything else, holistic, acupuncture, but I have to have some quality of life. I have to work!
I've had autoimmune conditions for about 43 years starting with Sjogren's, but now the list is much longer including severe fibromalygia and ME/CFS, but still I started working when I was 15 - had three part time jobs during HS as well as in college, and never went more than a few weeks without working. I didn't go on disability until I was 55, after putting in 44 years of work time (about 4 years of overtime) and was 1 point away from kidney failure and had such violent vomiting for a year and a half, breaking all my ribs more than once. After going on disability, I broke 6 bones, and was hospitalized for cellulitis and DVTs, among so many other things, but am currently caring for both my parents who live 40 minutes away from each other. I get so exhausted I nearly pass out, shopping, cooking, cleaning, etc. And still, most people think I'm goldbricking, and yesterday my sister called me a moocher for being on disability, just as she came off her 6th round of unemployment. I've been criticized for my hair falling out and for Sjogren's ruining my teeth (no money for implants), and laughed at right to my face. My good friend of 25 years is now ghosting me because I'm 'too boring' since there are things I just can't do anymore. Right now I'm being tested for Multiple Myeloma, as well as Parkinson's and MS due to a worsening tremor. I also have vein failure in both legs, causing swelling and very noticeable discoloration and get jibes for not wearing dresses or shorts. I could add plenty of other examples, especially concerning my hearing loss and the weight I've gained from 5 years on Prednisone. I even gave up my disability parking tag because of being accused of not being disabled enough. I've had medical staff accuse me of faking to get opioids (I'm allergic to them!). I never married or had kids because I just didn't have the energy. I have a hard time reading, listening to music, and watching t.v. because they now irritate my nerves (heartbreaking to me). Invited to a party? I'd rather get a root canal. My depression and insomnia are down the rabbit hole. Only my cat understands. I turn 60 in a few weeks and have zero desire to celebrate - what a joke. I'd rather change my name and move out west where nobody knows me.
Your troubles remind me of the story of Job 😭
I feel your sadness,sweet lady...💔😢 Sending you some love!❤
@@tp6299...exactly what I was thinking! How much can 1 person take!?!
I hope you've dumped all the people who have ridiculed you or not taken you seriously. I think you're utterly amazing with everything you've achieved but I do think that everything that you've pushed yourself to do, and are still currently doing, have caused your condition to worsen. I'm not a doctor just an observer of people with CFS (myself included). I wish you well.
My employer works against me instead of with me, I'm expected to do everything to full capacity. I don't have the option to not work or work part time. Here are 2 of my "favorite " reactions from my loved ones..." your imaginary illness" and " your just getting older". After a while of living like this, it makes you want to move to a new town where no one knows you, and just never admit your illness to anyone.
I get what you mean. I am looking for work and having FM has been a huge obstacle in finding something that I can do. I have been applying for jobs I used to be able to do in the past and am upfront with my disabilities and because of that, I have lost jobs. I am a single mom of three so this is very stressful and I find few people other than close family members that understand what I am going through.
I went on disability when I couldn’t do it anymore. Maybe you should consider this.
same here. i just left my job. now its very scary without a job but my health comes first
Wow!!! This is exactly why I’m looking into going to therapy. Setting boundaries is important and yet others just don’t understand why I can’t make commitments to do things because I truly don’t know how I’m going to feel from one day to the next. For those times when I’ve given in I end up paying for it for days at a time.
Can so relate! And seems those unaffected still aren't pleased, no matter how much quiet suffering in pain, fake smiles, etc. No matter what, it isn't good enuff ~ should've done more, stayed longer, been more friendly, thanked them for invite(!), etc.
When the event is over, they get a good night's sleep & hop out of bed, fine & dandy the next day. How nice that must be for them! I can only imagine. It will be no less than 3-4 days B4 I can get up & even move about slowly, won't dress or leave the house & every movement so painful! I will barely wake up to pee & maybe have bowl of cereal before I cannot stay awake any longer & am asleep again! This goes in for days & days.
They go back to work the very next day, doing their hair, make-up, dressing, smiling & driving to/from; + socializing & doing their job (no probs) B4 coming home to cook, clean-up & shower to do it all again next day. OMG!! I am tired just telling about it! The SHOWER alone will wipe me out for the entire day ~ that IS the event for the day... will be so sore (!), muscles too achy/tired to dry off; wrap in a big towel & flop down on bed, exhausted, spent! And that's on a good day, not recovering from an event the day prior.
They just get on with their life the next day - "no biggie"...(big sigh!) Am glad for them, but that isn't my reality & hasn't been since late 1980's, when in my 30's. No one truly can relate, tho if live with me can maybe understand that it's real. That's all tho.
I can barely remember what it was like to wake up, shower/wash hair, get nicely dressed, hair/make-up...& Go somewhere THE SAME DAY! (That's impossible for me; the shower, etc has to be day before -- so that's minimum 2 days where NOTHING else gets done; + min. 3dys after any event to recover, more like 5 dys... & We're talking about 5-7 days GONE! All that to do what? Go to dinner? A BBQ? A friend's wedding? A family B'day celebration maybe, or other holiday?!
For healthy people, like I used to be, it's an evening out - nothing more - a fun time for a few hours - "woo-hoo!"🎉 For me, it's stress of trying to get ready, look good & get there...being so tired after a short time of active socializing (& needing to pretend I'm not, for 2 more hrs). I get home & pull off clothes, fall into bed & I am 'out'!! Nothing will get done in my life for about a week, putting me further behind on normal stuff I need to do - cleaning, mail & paperwork, phone calls, etc, etc.
All of that, just to hear someone say how "they were disappointed" by something. Or, if it was a great time, with me at my best & enjoyed it, then I hear that... I seemed just fine, nothing wrong & maybe I just need to get out more, maybe lose a few pounds & I'd feel much better. (Screams🤯😖in frustration!)
Do they have any idea how bad that makes me feel? It hurts - tho I know they don't mean for it to. We exist in different worlds & only way they'll understand is if they end up with it too. (Rarely do!)
Right now, am so far behind that I will NEVER catch up & new things that need doing don't wait until caught up! My house is a mess, laundry not done & I lost track of things bought, that I needed to return & people I owe letters/phone calls to ~ people who will hive up on me & I will lose in my life & miss alot + guilt cuz' I cannot keep up.
I had a full & normal life once! I vaguely recall it & did nothing to cause me to lose it. I miss living my life, having the energy to do so.
**If anyone here can relate to this 'loss of a once-normal life', these feelings & expectations of others...the difficulty of going to even simple events with friends/family & the costs of doing that, etc...
...Maybe reply with your appropriate emoji faces if too tired for words.(?) Or, maybe I have just turned into a crabby old woman at age 64...??
P.S. ~ this will be about all I get done 2day...am tired out. Seems I should be able to do more. Maybe after a nap...
People lack compassion if its not happening directly to them
Thank you this is not just for us but for everyone. Anyone that suffers with chronic illness knows this,it's the rest of the world that needs to understand how we feel. God bless you I agree with you 100% take care, love from Canada.🍁💚💜💙☺
OMG YES! Stopping with explaining myself and just say, sorry, no I can't. It's made a huge difference over the years
I understand completely, o told my sister after my diagnosis and she said "oh yeah that's the thing that's supposed to be all in my head" so frustrating
So tiring - it still gets a rise out of me even after over a decade of being recovered!
Wow i needed this today! What timing. I am in a flare for over a month, I ache from head to toe and even getting dressed hurts. I'm getting pressure to go on an 8 hour car ride for a fun family trip. Staying with relatives for a week, debating if I can do it..wanting to..but i know i really am not up for that...is making me feel like a failure. Of course I want to go if I could I would.
Even now when I relate to what you are saying I still dont want to believe it. I still think their are people that have it worse but do more than I do, I just need to appreciate more and try harder !!!!
Fibromyalgia for decades - he’s telling the truth
I have seen a few of your videos, and I also see all the responses, so I'm not even sure you will see this.
But if you do, thank-you! Every time I watch one of your videos, I feel so much better for knowing someone out there understands.
I feel as though my family and friends try to understand, but they can not fully understand how 10 minutes ago i was fine, but now I need to lay down,
or any other reactions I may have to a situation. Thank-you for putting this information out there and making these videos for people who suffer from these physical disabilities, and their families. Have a great day.
No wonder I isolate . Much less stress. People can be very stressful . I can’t handle expectations . Tell them whatever you have to but don’t feel pressured . It’s only you who pays the price . I slipped back years trying to be somebodies carer , doctors everybody expected it of me . Well great now I need a carer . Don’t let anybody push you to do what you know you can’t do .
I had Chronic Fatigue syndrome when I was in my 30s. It was a relatively " new" disease at the time but I was lucky to find a GP who believed me and helped me. My ex husband told me it was " all in my mind" and to "get over myself". I was suicidal. Eventually I went into remission and take care of myself more.
I have had fibro for over 30 years, I'm now 66. I agree with the person that said they wish they looked as bad as they felt. Over the years I have slowly gained weight due to meds, lack of exercise due to osteo arthritis, pain, and C-PTSD, stress eating etc. I was walking with a cane for years, then à walker and now I'm in a wheelchair. My primary care Dr. tells me, if I lose weight I can walk again, yet OT says I will never walk again. I have people make subtle comments that I would lose weight and feel better if I got up and walked, riding in the wheelchair will only make me heavier. I need hip replacements but they will not do them because of my weight. I had bariatric surgery, the sleave, and I still didn't lose enough to get them done. I was just to the orthopedic surgeon to see about tears in my shoulder muscles, and there are not enough muscle to repair even with donor tissue, the muscles have retracted down so far. Now I am waiting on OT to approve me for an electric wheelchair, which will make it easier to get around and spare my husband who will be 74 this year. I am in a lot of pain, even with a lot of pain killers. Who here thinks I should get up and walk and exercise?
I have so many things the matter with this old body it isn't even funny.
I'm so sorry to sound so bitter about things, but I think in my brain I should still be able to walk and do things that I could even 10 years ago. In my mind I am only 29 after all. LOL ❤❤
I am tired of people judging me, I wish I had one line to say to them to never do it to me or anyone else ever again. (I don't swear, too bad sometimes lol)
Thank you so much for this video. After years suffering with this exact subject, I started to figure out how to approach the problem with the least amount of anxiety, insecurity, etc.
So nice to hear more advice and tips.
Bless you.
Its june/2023 and I'm already dreading thanksgiving and xmas.
Exactly. Thank you for your understanding, advocacy, and for standing up for the ME/CFS/fibro community...As we educate ourselves sans the awareness from others, we learn how to obtain/maintain our overall well being and self care. No longer do I/we have to justify anything to anyone regarding this chronic condition. God Bless YOU!
Absolutely true. It doesn't matter how much you explain the difficulties. I agree that good friends push. I don't explain any more. I've stepped aside, built and live a different life.
Your a good man, 😀 thankyou lots for presenting this video~ wow
was well needed
Dan i did your program and a year of full brain cap neurofeedback...I was very very ill for just a few months but I had severe anxiety, severe fibro, and medium CFS... the recovery took two years to get to 95 percent and Another year to get to 100%. I really appreciate you and your program. Thank you so much.
That's great to hear Julia - thanks for sharing. Would love to get an email from you telling me more!
Thank you for speaking so kindly and with compassion . I am told at times how good I look and there I am feeling so lousy. I have fibro and sometimes just have to say NO. It is hard to be misunderstood
and lonely to miss out on things.
It adds to the stress of dealing with chronic pain day in and day out, pushing yourself, explaining....
I do not know what I would do with out the Lord . Online audio scriptures are comforting and calming. We need Jesus and His salvation. No more pain in heaven. .
Thank you for posting this. This is excellent advice. It’s a difficult situation to be in but the last thing we need is feeling pressured when we know our limitations.
Going through this right now. Think if I do something everyday it will get better. It doesn't work that way. If I say go to work for two days then run errands on the third day, I know I am done for, at least for the next two days.
I only do difficult things if the payback is worth it eg going for a drive into the countryside which restores my spirit. I am 70 and the neuropathic pain is relentless. I worry about my future. I have no friends left at all. Even my daughter has estranged herself. I have a wonderful hubby and he makes up for all of it. Great video.
I have learned 2 things on my 60+ year journey. 1) Everyone has a different normal. 2) I am not responsible for what others think or say about me.
Another dimension is to limit your social connections so demands from others are limited. Unfortunate but works for me.
God bless you! I was always the care taker and then I became ill after auto accident and cervical surgery. I feel like I made excuses all the time. But I was too hard on myself. Then depression and anxiety creeps in. Thank you for you post. It made a big difference for this 60 yr old thankful woman! Thank you 💞✌🙏
This is incredibly helpful. I spend my life trying to explain why I can’t do things!
After a while you actually forget why youre a lazy cow who doesnt want to do anything. Thsts how I feel about myself having lived with a narcissist for too long.
So helpful. Thank you. I've lived with it for 32 years now. While it gets easier to manage the disease, it's always hard to manage the expectations of family and friends. What's worst is that they often don't support you when doctors throw their up their hands and blame the patient. Our medical system desperately needs to evolve. When a doctor doesn't know the answer, they should simply say that. Sadly, family and friends often play into the blame created by doctors. And they often are left thinking that it's just in our head and we just need to DO something to snap out of it when that's exactly the opposite of what we need.
This is really beautiful thank you. Such a helpful message and reminder. I am only beginning to get into the rhythm of respecting myself and stepping back from things that worsen my CFS and listening to this made me feel so much stronger and calmer and I look forward to trying to put these ideas into practice.
THANK GOD FOR YOU 🙏💔
Thank you so much for this video, it is hugely helpful to me. I don't like admitting to people other than those closest to me that I have CFS/fibromyalgia in case I'm misunderstood or seen to be a complainer as I "look normal" but I now realise its going to be better if I do, a relief in fact to stop pretending I'm ok and can do more than I actually can without suffering a setback.
I'm so pleased I came across your channel. You explain things so clearly.
When I was working in an office the other girls would arrange drinks or meals after work sometimes and I always said I couldn't make it. One day they were arranging a meal and Bingo and one of them said "no good asking Chris, she won't come". So I said I would join them this time.
As we walked into the Bingo hall, I had never been in before, I felt a panic attack starting. The place was much bigger than I thought. We went to buy a coffee and get our cards and I was shaking so much I couldn't carry my coffee so one of the girls helped me and got me to a seat. I was shaking and crying for about 5 minutes - I felt awful - it's one of the worse panic attacks I've had.
The other girls looked shocked 😅 When they were planning another night out I said "I don't suppose you'll mind if I can't come." 😅
I too have this issue but less now. My very supportive husband was worried because I wasn't going to one swimming class. I gently thanked him and told him. It is not encouragement needed to go to something you love. It is an encouragement needed to be wise about my decision. Not easy for them either. I also say, you just have to trust that I know what level I am at today.
This is such incredibly wise & thoughtful advice. People need to hear it. Isn’t is wonderful how much we learn about ourselves! Then we can choose & decide to live better, smarter lives.👍🏽👍🏽Blessings & peace!✨
I’ve had fibromyalgia for about 40 years . Also endometriosis, spondylolesthesis and Parkinson’s disease, which was recently diagnose. My tremors are very bad. I am so sick of being sick. My family have called me a hypochondriac for years.
I have fibromyalgia and I have never heard anyone explain it so clearly and informative and perciseley . Thank you please keep making these videos. I was doing that with my Dr. I gave up and stop telling her anything. I would just say same old same old. Thank you 😊
I am a massage therapist and I've been told I can't really have fibro, but I love what I do and I have to manage myself and my time so that I can keep doing it. I think the close people in my life understand, but they forget over time because most of them don't see what I'm doing daily to manage the condition. They mostly see me when I am in good shape, because I've planned ahead. Then when they see me on a bad day, they're like, "whoa that's still a problem for you?" Yeah, it is. But I'll take how they are unable to notice most days as proof I'm actually doing a bang up job these days managing my fibro symptoms!
I haven't been diagnosed with Chronic Fatigue Syndrome. But I do believe it is behind all my health problems. Three years ago, I was under enormous stress effecting every aspect of my life. I began feeling myself unable to do things I enjoyed and could easily do, fatigued and cold a lot. I was an avid Power Walker, multi tasked and had excess energy. Now after doing my laundry at laundromat I need a two hour nap. The seasonal hay fever has turned into being allergic to just about everything indoor/outdoor. My medicines grow in size and I have two allergy shots a week. . I have chronic upper respiratory problems and if I over do it I get postural BP. Due to stress from allergies and Vertigo, I have had Ventricular Tachycardia. I don't work anymore. I safeguard myself from triggers and allocate increments of time to do things I could do consecutively. Watching your video made me feel someone understands my limitations and frustration. Never did I see my to do list shrink so far down in size. There are days I feel so exhausted after showering and styling hair. Days I just can't be around a number of family members. Is there remissions, do you ever regain vitality?
Yes, I play competitive sport for many hours per week and often swim 20 or 30 lengths. You will other people describe this kind of thing in their recovery interviews!
Yes, there is remission and even full healing. The main thing that helped heal me is to get rid of stressors. When I was happier I felt better. I had so many symptoms that went along with my CFS and I tried pretty much everything to alleviate them but none of them really worked. I even remember nodding off in the shower and on the loo. But as soon as I started to accept my (strange) life, focus on only the absolute important things in my life and only give my energy to them (my husband, our son and my elderly parents who lived with us), I started to feel happier (plus I had an excellent diet) and slowly, slowly I started to recover.
On a practical level I would adopt the ‘spoons’ explanation to create healthy boundaries for yourselves. If people understand and accept this description there is clear simple communication. People who have never had a chronic illness are not going to understand and all we can do is ask them to accept it and trust us. I now have friends who ask me how my spoons are and this is so much easier, because often when I am out of spoons I feel ok within myself, I have simply hit a wall of zero energy. I have learned not to feel depressed or frightened at being spoon less and to shut down until I am restored. So within myself I’m accepting but physically have to withdraw for a while. Getting rid of the fear and panic is the most important thing. Good luck!
I was seeing a phycologist and was finding it stressful when people were coming up with their own diagnosis and treatments, when there were days family/friends would call, I’d let it go to voice mail and txt them back. “ today is not a great day and I’m not up to talking. Thank you for reaching out. It means more than you know just how much you care C xx”
It shows respect for yourself and them.
Thank you for doing this video with compassion and care in your voice, it really helps me to know that my daily/nightly struggles are real and others with fibromyalgia have similar problems
It's absolutely real for sure - we couldn't all be making up the same stuff, right!? Yes, the recovery interviews go into a lot of detail, I am sure you will hear your experience echoed many times. Have you watched them yet?
The pain is awful but dealing with the people comments around are as bad as the pain and it is the frustration, I'm 😢 for pain and frustration for feeling alone with this illness IT IS THAT I DONT WANT TO DO SOMETHING IT IS THAT I CAN'T....PAIN DIDN'T ALLOW ME to rest well, to move freedomly, to have a normal active life 😢
You are a blessing to all of us who suffer fron CFS and lack understanding from our family members. Your channel gives us the opportunity to understand this complicated syndrom and find ways to ease our pain and suffering.
I am 76 years old and have had fibro/cfs since I was 50 yr old. This winter has been exceptionally hard for me plus the big changes in the weather hasn't helped. I've worked with it to the best of my knowledge. It seems to have gotten worse. I totally relate to the frustration that you have felt. I also have felt guilty when I feel that I can't do things. Before this when I really felt as good as possible I usually did too much and got myself into problems. I honestly do not know when to push myself a little and when to slow down. I am so glad to hear that you understand. I knew it was complicated and I have pushed on to find different ways of help.
In my 60's and have had fibro and cfs for most of my life. I moved to a mild subtropical climate 35 years ago.
However, I think our bodies don't deal with changes in temperature. Even a drop or increase of a couple of degrees is painful to me. 😢
I must be odd. I have moderate ME/CFS and when I don’t want to do something, I literally just say “no thank you, not today.” No discussion, it’s more stressful to explain and justify than to just say no. But to be fair my friends don’t hassle me, my family are supportive (the ones that aren’t I cut out last year) and I have a good GP. one thing you learn with this illness is how to streamline! And you only have to say NO to people once or twice, and they soon learn that when you say no, you mean no. You have to stand up for yourself, because people will take the piss, and try to jolly you on with comments like “well if you got out of your wheelchair and walked more you’d feel better.” (Yep, that’s a real comment.) I say nothing, wheel myself away. I need my time and energy for recovery.
You have to learn to be very strong with this disease.
This is very valid, because it's better to make the choice of making space to get well, rather than keep pleasing other people until your body packs up, and then you are forced to. I've learned/ learning this from personal experience and I love the way you direct us into putting ourselves in the other person's shoes, to understand where they're coming from.. that is something very powerful to learn and is free-ing in itself. Thank you Dan.
I have always been introverted and although I enjoy certain company for a short time, it exhausts me. Having Fibro exacerbates the exhaustion. My husband is the only person who not only is the one person who truly understands how fibro effects me, and I also don't get the same exhaustion being with him. I was a marine for 11 years before being medically retired for fibro so I don't tell many ppl since they don't understand and in my more compassionate moments, I don't blame them, I look fine, just tired. I've had doctors and nurses treat me like a liar, hypochondriac all of it. My mother won't stop suggesting "cures" and I've tried them all and it's so demoralizing to get a glimmer of hope, just to realize the "cure" doesn't work for me. I have a disabled placard and only use it when it is really painful. I look fairly young so I have been yelled at, accused of lying, accused of using someone else's placard, you name it and in some ways that is not only emotionally painful, but on bad days, physically painful. My own son doesn't understand because he believes what his father, my ex husband tells him: that it can't be as bad as I say. I am so desperate to find a way for my son to understand so he doesn't see me as lazy, lying, etc. So many times I wish my pain was visible. Friends hug me and when I ask not to be due to pain, even their light hugs hurt and I know they mean well, I'm just tired and in pain and I'm so tired of being tired. Sorry for bitching, I'm in currently in a flare up and I'm just venting. I have so much to be grateful for, I just need to focus on that.
Perhaps start being more open with your pain instead of hiding it, then when they ask, explain that it is constant and never goes away, there are just bad days and better days. You have to ration your energy and yes, today isn't a great day. I understand how hard it is when you are used to "coping and managing" . 🐄💜
I completely understand. You're in awful pain and want understanding and compassion. Please try to send clips like this one to your friends and family. Find other good clips that validate your experience with this and educate them. Then its up to them. I wish you better health love and hope...❤
I worked hard at a job until I couldn't get past the pain. 22 years of pain. I told my boss hey my back hurts. He responded I hate to see you when you get old. People never understand how you feel. Only God understands. I speak to him and ask him for strength to crawl out of bed every day. He loves me and someday I will get to go home. May God always bless you and keep you in his care for without him it is only emptiness.
My boss told me same thing. I had to retire early due to the pain was debilitating.
This made me cry 🥺🥺 thank you for your kind words and advice !! This is the first time in a long time I felt understood !! 💗
I really enjoy the way you speak, it's so calm and encouraging.
Thank you for sharing your experiance.
I have struggles explaining people from my environment how bad I feel due to horrible pains and that I just can not live with this horrible conditions.
Due to the lack of sleep and horribly paintful nights, I feel sooo frustrated and nervous. I have troubles in solving very easy tasks.
I can not concentrate, I am sleepy all the time!
The thruth is - all my fybro problems started becoming mom of multiples.
Handling huge physical and mental challenges, I felt totally exausted. Suddenly, I felt my bones and joints burning 24/7.
Anyway, one more time, thank you for your videos, you issue something positive and calming.
Regards!
My fibro moved in after I was diagnosed with MDD (unfortunately, treatment resistant for 30 years) & GAD.
It's as if depression eats away at your body. A snowball rolling downhill effect. Things fall apart the longer your depressed.
Ive been accused of being a hypochondriac. And YES ... I wanted to throat punch them.
Who ... in their right mind would want to live like this, if it weren't true?
I've lost family & friends too. They fall by the wayside cuz they don't know how to help, or what to say. So, they take the easy route out of your life. Heartbreaking.
Ive fired so many doctors in order to gather the GREAT team of specialists I currently have.
Yeah. There's plenty of doctors that just want the "easy" patients. It takes a dedicated doctor, that's up for the challenge of taking on a case like mine.
I would like to encourage people to be their own best advocate!
YOU know your body.
Don't let lazy doctors gaslight you into believing "positive thinking" is all it takes.
NO! We're in REAL pain ... mentally & physically!
Do not stay with a doctor that can't (or won't) help you. It's a waste of precious time!
It breaks my heart to the core knowing others are suffering with a laundry list of diagnoses ... just like me. 😢 It just tears me up inside.
Here's praying for ALL of us! Cuz this fight aint for wimps❤
As usual you are such a help and I DO always feel a bit better listening to your counsels thank you so much
My daughter means well. Here are two books she has suggested to help. "Feel the Fear and do it anyway" & "Learn not to procrastinate". LOL.
I am glad you are at least able to laugh. People really don't understand.