hi everyone
Im just wondering if anyone else feels their CFS is never in remission , I read about folk having a few good days or even much longer periods then crashing but my symptoms have never abated since the day this thing started 15 years ago... every single day I’m too ill to enjoy the life I own and that picture presents as either feeling very ill or extremely ill where I just lie listless and unable to read or have soft music on. I was once so very active and led a productive and full life, then I got sick, sicker, sicker it was like watching my life slowly peeling away around me while I sat helpless to do a thing about it...but now I’m completely at the mercy of the mirade of symptoms which have buried me alive. Can anyone relate to this? I really don’t think I “crash” I think I just crashed and I’ve never come back, my illness definitely has worsened. What am I doing wrong? I’ve fought this thing with all I have and tried every type of diet, supplement, pacing, challenging my body, my thoughts, you name it yet every day is still a variable of physical and mental torture. Does anyone else follow this unrelenting version of CFS?
thank you for reading...💟
Hi Sadly,
I think we all have our own experience of this condition and share some similarities between us all but not exact copies of symptoms. At present, i too feel pretty ill, yesterday i did too much and now i pay but, i felt pretty ill most of last week too. I glide through life more a shadow than the entity i was but, feel i have pleasurable time still amid the pain, brain fog and inability. I have severe issues walking, made worse this last year. For this i have started to attend physio and am experiencing less back issues which is great. My walking is still affected though. Through inactivity i have put on weight so, i am eating a salad a day with chai seeds, omega seeds, avocado and beetroot. I am taking a suppliment called feroglobin which claims to help tiredness and fatigue as well as calcium and magnesium as well as a dairy free yoghurt drink. Funnily, i have started to be able to tolerate some music easier since starting all this. Today is a rest day. The headache and eyestrain, neuralgia and red hot ear stop me from doing anything much. I have come to terms with that and although i can look around and know what i "should" be doing, it would be not only a waste of any energy i have but would further deplete me. On the plus? Last year was worse for me. More pain, more exhausted, more feeling at a loss. Don't get me wrong, still have these symptoms but i feel kinder to myself about them and rest and will eventually get into a better routine.
I have a cleaner that helps, children i can ask for help and am resting when i can. I cannot do shopping or carry things without pain and if i try, like yesterday, to alter my path a little, bang! Too much leads to the next day having to do very little.
I have other circumstances that take my attention that at present add to my inability to rest more. My daughter struggles at school and is waiting a diagnosis for aspergers. She has to be accompanied to school and picked up sometimes at short notice. Next year is year 11 and I'm hoping things settle a bit after that so i can get my routine more organised. At present i'm coasting but am ok with that. I don't want to push myself too hard right now.
It sounds like you feel you have exhausted everything but, people do recover spontaneously from this without doing anything presumably! My friends partner had it for 10 years and is clear now with his own personal fitness business.
So, yes, like you no major good days right now more less bad days and less really bad days though. Don't give up hope.
Beverley
Yes! Mine started with a flu shot, im sure. So im guessing mine is a chronic virus(ebv) becuz i feel the same every second ! 28 years! Im shocked i haven't got throat cancer yet from the chronic sore throat.. or any cancer from my poor body dealing with this for so long! That is why i try to do everything as healthy as possible.. soaps , shampoos, make up, all natural. Foods as many veggies as possible-kinda bad there but try. Cut down on sugar, wheat and dairy. Even cut down on microwave use. No corn syrup or msg in ingredients. Just trying to preserve my body as much as possible. Sleep 8 or more hours is my #1 help, but rare. Epsom salt bath was my #2 but now im dealing with feminine stuff , menopausal, which makes baths hard. Ugh!!! Vitamins! I decaf drink green tea every morning with coconut oil, little bit wheat grass powder and gojiberry powder. Just bought some maunolaurin for immune system havnt tried it yet. Did yours start with a virus? Have you tried sntivirals? They help some people.
I too find myself at the mercy of the relentless illness. I just feel useless and worthless all the time. I never have good days or periods of wellness. I have yet to even be given a diagnosis, all my doctor will say to me is that I may have CFS/ME. The last time I saw my doctor he even downloaded information for me about the condition but will not commit to diagnosing me even though I have been like this for over two years. The worse thing about this illness is that it is invisible and as such I have often come across people who think there is nothing wrong with me. My days are filled with pain and exhaustion and,for me anyway, there seems to be no end in sight.
I can totally relate. I've had ME/CFS for almost 20 years, and haven't felt even halfway normal since I first became ill. By the way, you express my situation so eloquently. What is, I think, especially unusual about my case is that I was diagnosed in about 3 months. Then I went on to see one of the best specialists in the U.S., Dr. Paul Cheney. In spite of this, I kept getting worse. Nothing has helped. To perhaps give you a bit of hope, though, in the last few months, I've been able to get out occasionally. I can go for a meal with my husband, or take a special recliner chair to the movies. Sometimes, these "activities" cause me to crash. I now wear a heart monitor, in the form of a watch band. This helps me to know when I overdo it. Of course, overdoing it can mean just walking from one room to the other. I've found that in such an extreme situation as mine, mindfulness meditation has helped me to cope. Also, I've had to go through a kind of grieving process for the life I once had and the person I once was.
Hi sadly, so sorry to hear this, regular light stretching , yoga can help , chanting, and a relationship with a loving God and self for support and healing <3 Guava
Hi I never feel better. Over the around 22 years I have had ME I have got worse . never improved. Had shingles for six weeks at the moment which is making me struggle even more. And horrendous pain on top of my usual constant pain. Any infection really drags ME down. And having ME makes it worse and take longer for an infection to subside . can't win ! X
I was like you when I was first ill after having glandular fever and was practically bedridden for about a year. I've very slowly managed to improve a bit over a few years and am now at the stage where I can do things like go for a walk or do a bit shopping some days but other days I crash and have to rest all day (like today!). I set myself small goals like trying to walk to a lamp post and back then rested a few days then tried it again and gradually increased the number of lamp posts I went past. I also sit on benches when out if I'm getting tired to rest before I try to walk home again. If you are in bed most of the time you could set yourself small goals like circling your wrists and ankles, sit on the side of the bed or in a chair and raise your shoulders up and let them drop and do shoulder circles. Any movement at all, however small, would be good for you even though it's difficult at the time. Listening to guided meditations can be really helpful too as they allow your mind to rest as well as your body. Remember that mental activity especially if you're stressed or anxious can use in energy as well as physical activity. Focus on what you can do rather than what you can't do. If you are unable to read you could try listening to a book or podcast instead. Try and stay positive - I really hope things improve for you soon.
I understand you completely. I am in year 17 and I am pretty much down for the count all the time. I may have a few good hours a day, but more got have days where I do well to sit up.
Before the illness I was a career ladder climbing Type A personality- then in one day I couldn’t walk. Fatigue so unreal I can only compare it to coming out of major surgery.
I took early retirement, cut out all social activities and pulled inward. The saddest part of my life is having family who thinks it is all in my head.
I finally have my husband somewhat understanding. We watched the documentary Unrest on Netflix and he had finally seemed to understand.
My house is a mess, my paperwork orally disorganized, my once beautiful floral garden is now grown up. All my money is spent on trying whatever comes along.
Join the millions missing website...you will be floored when u find there are so many of us in this shape.
If you can watch- unrest on Netflix-a wonderful documentary about cos. Join missing millions movement-world push for info on CT’s. Get a different doctor- bi have had 3 great ones all day burial base.
My family is the biggest problem - they think all this is in my head.
Unrest should have been capitalized. Lol
Sure understand this!!! Strep took four weeks to go away- and I was on antibiotics!
Podcasts and audio book have saved my sanity!!! Mine are free thru our state library- I may be in bed all the time but my brain is with it!
If I get a virus it stays for at least two months. Luckily I am tend not to pick much up .
Elaine thank you so very much for answering and your thoughtful, kind words of support and encouragement- I appreciate it more than I can say...I will definitely r=take on board your advice; ive fought long and hard so still have some fire buried deep inside. I hope you continue to improve. Heartfelt good wishes for the future 💟
Thank you for answering Debbie, I appreciate you taking the time and what I know can be excruciating effort. I’m ray to hear your situation sounfong so much like mine (i think I was very much A type personality pre ME, now u barely have any personality tibspeak of!) I understand and gear you about family - mine have pretty much disappeared insidiously; I’m just too boring now where before I was the exuberant, energy bubble of fun and entertainment. We loose so much...
i will join the millions missing website as I’m finding the support of just knowing others are around helpful (though I’m sad fir them too)
I hope from the bottom of my heart things get better for us one day. 💟
Hi Beverley
Thank you for responding and sharing your story, I know how hard it is to allocate energy so truly appreciate ou writing. It sounds like you have some good strategies in place which are giving you the odd glimmer of respite which is heartening to hear, I dare to hope..... I hope things improve morseso for you in the future. Wishing you all the best 💟
Hi hi Tracy
thanks for your reply and advice. Food is a tough one fir me at the moment as I’m awaiting major surgery for Crohn’s disease - my gut is fair,y intollerent of many healthy foods typically so my diet is t great but I do take some supplements. Yes I did start with some kind of virus away in Mexico on holiday 15 years ago... when I got back to the UK I ought I had ongoing jet lag but that was not the case - if only!
I too use Epsom salts but in a foot bath as baths make me ill I shower instead. It certainly sounds like you are doing all the right things. I hope you find some respite very soon. Thanks again 💟
Dear Noj
thank you for finding the energy to reply, I’m so sorry for the way you are feeling and it feels so so very much the way it is for me. I had years of being undiagnosed because as I said I have Crohn’s disease plus a serious mental illness o the doctors just kept fobbing me off and blaming each of the two conditions. I wholeheartedly understand where you are and how it feels, I’m sorry I can’t offer any answers becauseyour last sentence resonates so strongly with me...my heart goes out to you and I hope you get some answers and support very soon. I know how hard it is but you need to keep pushing your Doctor as hard as you’re able to get a referral to someone who is willing to commit to a diagnosis. Try to keep your lines of communication with other suffereser open, at least we have each other - it’s one step away from the isolation 💟
Hi Jackie and thank you for answering. It’s heartening to gear that after such a long time things are begging get to improve a little for you, I hope they continue to do so. Thank you fir all your advice and helping me dare to hope. Wishing you well 💟