I have had CFS/ME for some time, however I have recently been diognosed with Fibro.
I have researched and read that aerobic exercise can be good or my friend says essential for her Fibro. Yet if I exercise other than washing a few dishes or changing the bed covers in stages my chronic fatigue is much worse 24/48 hours later.
I am currently in bed for around 20 out of 24 hours a day.
Has anyone out there experience of the two condition together? I would be greatfull if you would share any experiences of what has or not worked o guide me going forward.
Thank you 🛏🏋️♂️🛏
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smilingjane
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Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org
I only have fibromyalgia so cannot comment on having both. Yes, exercise is recommended for fibromyalgia and has been found to be of the greatest benefit. However, post exercise malaise due to ME may mean that you need to take things very gently and slowly.
I’m new to this forum but had ME for 4 years and fibromyalgia and FND was diagnosed a year and a half ago.
In my limited experience everyone has a different bag of tools to recovery or management of the balancing act. Learning how to not ‘overdo it’ is probably my biggest challenge. Aerobics is totally out of the question for me for example. However gentle daily walks with my dog, gentle yoga, meditation and slow floating and swimming all help me - I think the best thing I could offer up here is LITTLE and OFTEN. I had a period of around 3 months of remission between April/May and August. I had hopes of regaining work and began an OU course. By September I had relapsed and each relapse seems to get more severe on a physical level. From what I understand about my own patterns, the harder I push myself - that serves as an investment in the next period of relapse. So going gently gently, pacing and careful management of diet, energy output, looking after mental health, keeping mobile but not going mad when you think you’re getting better.... all help to make the future relapses less severe.
This may all be very different for others, but it’s how it seems to work for me.
Find your flow, the things that work for you and build a foundation on them.
Thank you so much for you experience and views. It all absolutely makes sense. Very occasionally will have a day when I feel relatively normal and find myself thinking about starting back at work or volunteering.
Then the following day everything changes. I have stopped looking at online vacancies. It upsets me when I see jobs I would love to do.
Today I went to a shop 10 mins walk each way. First time in 5 weeks. Collapsed in bed when I got back. Shouldnt have gone but was pushing myself. I am going to stop doing that.
Dosnt it make you miserable though? I am grieving for my lost self. I used to love walking and cycling.
Hard to hold a book now.
I will listen to what you said though and think about finding a fliw, my flow.
i would recommend checking out the science for M E .website even nices new draft guidlines are recommending against increasing exercise i know from 30 years experience with M E that pushing yourself can lead to long lasting worsening of your condition pem can and does get worse . there is plenty of evidence from the workwell foundation that shows the biological impact of exercise .
I am sorry to hear about your OU course. Have you looked at the small Mook courses? You probably know but the OU have some fabulous short free courses.
Too much for me at the mo. But am thinking might point some reading off.
It can make you miserable if you let it take hold. That’s why I mentioned looking after mental health too. I beat myself up terribly in the first couple of years, told myself I was a fraud and it was all in my head. I know better now. I must be as kind and loving to myself as I am to others. If my mental health isn’t in focus then I make everything far worse for myself.
I had to decline an offer voluntary support work for a charity working with victims of crime. I was gutted. I’m clinging on to my OU studies by the skin of my teeth and my tutor has been incredibly understanding. I study when I can and I am about a month behind.. but it’s no longer stressing me. The attitude I take to any situation is in my control, even if the situation isn’t. Gratitude is everything.
I haven’t heard of Mook so I’ll allow myself to browse out of curiosity. I’ve stopped looking at job vacancies too. Focus on the small achievements - even if it’s making a warm soothing cuppa for yourself. Drink in the love for yourself.
I haven’t heard of the Workwell Foundation either ALKT. I shall look that up thank you. I take my hat off to anyone who’s lived with this for 30 years.
How lovely to connect - it’s heartwarming, deepest thanks for sharing.
Thank you so much for your helpfull and kind words.
Most universities do the short courses from Oxford to Havard. Some are just an hour in length and some 30. I've looked through a lot but the OU comes out tops for me. I did my undergraduate degree with them in my forties. Absolutely opened many windows to the world for me.
What you are experiencing is Post Exertional Fatigue. I also have it although I don't have a separate M.E. diagnosis. You also have Chronic Fatigue - persistent tiredness (literally tired all the time). With CF any exertion can land you in bed, but with PEF you have to be very careful because overdoing it can cause you to deteriorate permanently by that I mean, what you are currently able to do physically, range of function etc can be become restricted further in the long term the more you overdo it. You also tend to have autonomic irregularities or lack of synchronization during PEF so you can mess up your breathing, develop palpitations etc.
They say physio with graded exercise helps but I haven't tried it myself. Some people find it makes them worse, some say it has given them back their quality of life. Has your doctor suggested this? There's also apparently a CF clinic you can ask to be referred to.
Like you I cannot do any aerobic exercise, I cannot now tolerate Yoga or Pilates, I can tolerate walking on some days. But regardless of what it is I always pay a price for it. It's either a big price or a smaller price. It either hits me a couple hours later or next/couple days.
Yesterday for e.g. I had a smear test appointment. Went to bus stop around the corner. Waited 5 mins. Got on Bus. Got off bus. Walked 2 mins to clinic. Waited to be seen. Did the obligatories. Left clinic. Walked back to bus. Stopped by shop to buy some cream. Walked 5 mins back home, had dinner. That was all I did all day! Got into bed and feel like the zombies have landed this morning. Am shattered! Ideally I would do absolutely nothing today, save shove something simple in the oven and maybe wash the dishes. But there's stuff I HAVE to do. And I was going to post on here and saw your post.
Now I know that because I must push myself when I need to rest today I will crash tomorrow or Thurs/Fri
Occasionally I throw caution to the wind and go for a run. Then end up in the world of the living dead.
The most exercise I would suggest you do is walking. Sometimes I also do reps with 5lb weights or a Dyna Band but just a few and I do it purely to keep my muscle strength. And because it something you can do sitting etc.
It's good to take advice from other fibro sufferers, but always bear in mind that it affects everyone differently.
Do you have any other health conditions? Are you taking any supplements? How are your iron/ferritin B12 Vit D levels? Has your doctor tested recently? Improving these can help a bit.
Thought I had responded to your thoughtful msge So apologies if 2 pop up!
Thanks for explaining PEM I didnt realise it was known as well as a separate complaint to CFS/ME. Makes sense.
I didnt realise that overdoing things can cause pernenant damage. This has made me sit up and think. I need to research more.
I have Hashimitos disease so am carefull with vits. I have sublingual D and B vits with Folate. I had a bowel resection years ago so dont absorb nutrients well in my gut. I SI B12 weekly as was deficient.
So my vit levels are now good. Though I will start private testing to keep things up to scratch.. I'm in the UK and GPs usually only allow vit testing once a year. Not sure where you are?
I will check out the chronic fatigue clinic with my GP. Thanks for that.
I am seeing a Rheumatoligist specialist in a couple of weeks to make sure theres nothing underlying like Lymes, just in case.
I know what you mean. Sometimes there is something that has to be done and we pay the consequences. Sometimes there us just no choice. Life is complicated and does get in the way.
You're welcome hope it helps! We're very similar, as I also have Hashimotos and am still trying different thyroid medications to see if anything helps, as I do think it's all related. Not expecting a cure but some improvement would be good! Have you joined Thyroid UK forum here? Very helpful. I suspect cortisol and hormones are also part of the jigsaw puzzle with the fatigue as well, if only I won the Lottery I'd buy the best medical advice I could get!
Yes defo go for the CFC as they can help with pacing and diet etc.
Yes The TUK site is Brill. I am trialling T3 at the mo. The Cortisol tests all seem so complicated. I have started Estrodial and that has brought my sex hormones up to a good level.
Morning, I have cfs/fibro/treated sleep apnea, yes I know where your coming from as I used to love swimming 3 times a week but I felt like I had flu without the cold after and laid up sleeping, it’s hard sometimes to get a balance , I try have a little walk occasionally and do some gentle excercises, and stretching but really just pacing and running my house and helping my hubbie with grandchildren that’s my routine . Today I’m doing some housework and pacing in between with a cuppa every 20 mins as hopefully the tasks ive set will get done and if they don’t it goes into the next day. Some people have recommended yoga something I have not tried as yet. A great piece of advice from Wild -wander. Just go with what your body is telling you, I do think having the two together is not a good combination but I just take each day , having a few friends /family that understand differently helps me stay postive, and a chat here knowing I’m not alone in all of this is good too xx
I am going to take notice of your advice and pace. I do want to try yoga. Used to do it before I became I'll. I think I need to stop forcing myself and rest and go with the flow. It must be lovely having children around 😉
Thanks again for responding and we'll probs meet again on here amoungst more posts. Thank goodness for HU and for support and kind words. Makes a difference ⚘
Yes I hope we do, my little grandboys and daughter are in my bubble for childcare as she works 3 full days and also studying over 3 years to become a primary school teacher, alot to take on board with 2 little ones. Take care x
Please don't neglect some exercise; I know it's difficult, I'm losing fitness by the day too, but you must try not to lay in bed all day, as your muscle tone will weaken still further. Also you will become more susceptible to life-threatening conditions such as Deep Vein Thrombosis, (DVT), which is a danger to anyone who doesn't keep their legs moving.
I saw it a lot while I was nursing, even long haul air travel can cause this, and if a clot breaks off and travels, Heart attacks and Strokes can occur.
I have personal experience of this; I once had to spend 3 months in bed, due to pregnancy complications, and I had absolutely no muscle tone left afterwards. It took nearly a month to get myself out of a wheelchair, and I was young then.
I never fully got my muscle tone back to pre- pregnancy state. I've always been an obstinate person, I won't let my body dictate what I can and can't do, but with old age catching up, I have finally had to accept that I won't be playing active sport any more, nor will I be rock climbing again.
Please, get out of bed and into an easy chair, get a pedal machine you can use in the chair to keep your circulation going.
It doesn't matter too much if you can't do much at first, but once you can, start with short walks up and down your street, or round your garden, using sticks or crutches, if necessary.
I use a rollator; it has its good and bad points, good being it has a seat I can use while out, also I can carry a few bags of shopping on the handlebars; The bad point is it tends to make me bend forward from the hip.
Not trying to scare you, but the Physio was right, although you wouldn't be able to jump straight back into High Impact Aerobics! Mobilise slowly and gently, and increase a little each day. Tai Chi is a gentle style of exercise and there is a seated version you can use too. Youtube has lots of videos about it.
Tell You a secret, I Have a wheelchair, but I won't use it unless I know I have a very long day ahead, such as a wedding or Museum visit. Last time I used it was 4 years ago.
I will listen yo what you say. I am making the effort today. Get up, do a bit then rest etc. I know the importance of keeping going.
I suppose because I came to Fibro and CFS relatively late and it's only been a few years, I always thought I would recover. I still think I will. Though to hear people's story's it looks plausible that I will never fully recover 😏
So, to focus on what I can do as opposed to what I can't do 😉
I like the idea of Tia Chi and I think I can try get gentle yoga jst a few mins each day.
Isnt it odd and a shame that you didnt get your muscle tone back to pre pregnancy. Pregnancy is such a shock/strain on the body.
I will take on what you said about deep vein t. I'm slim and quite lithe, (well for now) 🤔 so never really thought about that. But if course your right. I am lying with my legs un the air now!!
I might get a pedal machine. That sounds an idea. I will check on line.
Thanks for all your advice. I like the idea of your wheelchair staying put for now. But very handy as you say for long standing situations.
I used my mums ha!! in between lockdowns to see an art 3xhibition. Came in very handy 😉 Dont people stare though!!!!
Take care
Jane
🤗
I can absolutely relate to you. I feel exhausted at the slightest exercise. Even a full blown bath and I'm knackered! I think that the exhaustion is worse than the pain in many ways. x
Have friends and family I could rope in though! funny thing is this is the longest ever been and I have found out dosnt need washing more than once a week!
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