Hey everyone, I am new to this group & fibromyalgia, looking for some advice and support.
My biggest issue with this condition is that I cannot exercise/be physically active without developing cold&flu like symptoms within the next 48 hours. I get really sick and end up in bed for the next 1-2 weeks as a result.
I have a passion for fitness - I love to walk, run, exercise and do yoga amongst other things but I can never progress in these activities because the weeks that I am unwell after physical activity set me back and then I am back to square one, only to try again once I recover and the cycle repeats itself.
Has anyone else experienced this? Do you have any tips on how I can stop getting sick and improve my endurance?
Thank you in advance
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NeutralGazelle
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Exercise is great for fibromyalgia especially fatigue. Sounds like you might have done too much or too long (per session) and exhausted yourself. How about trying a shorter and gentler session and see if the sick feeling improved, and if so, build it up little by little?
I have been diagnosed for 21 year's with fibromyalgia and biggest thing I have had to learn is to pace myself. It's incredibly hard to do especially if you feel fine when you are excercising. Try to do a small amount of excercising and find out what your body can cope with. You may not know for a day or two if you did to much.
Thanks for replying. So interesting what you say about not knowing until a few days later that you’ve done too much! Will have to keep in mind I may not always have as much energy as I think.
I suffered from this for many years. It was pretty extreme that even normal activities like spring cleaning the kitchen cupboards or hoovering the house would trigger it.
I still have it but have managed to lower the severity and frequency of the attacks by changing my diet. I eat clean, so no processed foods and cut out white rice, pasta and bread and ditched sugar. It is the only thing that has helped me. I try to eat anti inflammatory foods and have turmeric and black pepper everyday. It has not cured me but I can do the things I want too without becoming bed ridden as a result. If I do overdo things my recovery only takes a day or two compared to a week or two.
I gradually increased my exercise over a year or two to where I can take a walk everyday. It’s an ongoing balancing of what I need to do and what I want to do. So I pace myself. I do make sure I include my time in my day and have learnt to say “ no, sorry I can’t do that for you.” I am a born care giver and forgot to include myself for many years. I make me my number one priority now. Good luck I hope you find a way to do the things you love again.
It sounds as if you doing too much, I found I had to pace myself. Had a tracker and slowly built up my time and pace. If you have a set back, stop ., rest a while and try again. It does work but it took me a year to get where I am. So don’t give up. When a bad flair up comes it takes time to settle down again.
It would be a good idea for you to ask your GP if you can sit with a physio that can explain more about Fibro 1 thing I would say yes exercise is good very good in fact but the way you did everything before fibro is now changed you have to reprogram find out what you can do and cannot.. like you already have with exercise ...Be patient with yourself start with short exercise plan and build up to what you can do without it effecting you... the world does not end with Fibro but the real trick is managing it and understanding hope that's some help
Was going to jump on this post with an answer but everyone else has covered it quite well. Pacing is key and find a baseline and build gradually from there. Small gradual steps while listening to your body and not overdoing it.
I can relate. Before I was diagnosed with fibromyalgia I was under the physio and one night after a physio session I ended up in A&E with crippling pain then I decided to stop physio as I noticed the trend of suffering more after the session. And still I find myself really struggling after doing a simple task like standing in the kitchen to cook within hours after I will be in so much pain that I wouldn’t even be able to walk straight. GP referred me to Live Well With Pain and I had my telephone assessment with physio yesterday. I mentioned about pain after doing even the simplest 10minute walk and he advised me that he will work out a suitable plan. Looking forward to it, will update how I get on x
Hi, I am fairly newly diagnosed too & I find just a simple task like picking up leaves in the garden & a 10 minute sweep just exhausts me for the rest of the day.A simple walk can help when you feel less tired, it almost gives me an energy boost but does anyone then suffer with extreme foot pain, like sharp stabbing feeling where you can hardly put your feet to the floor?!
I have learnt the one thing living with Fibromyalgia is pacing yourself, something none of us probably likes doing if you have been energies previously but it’s now a way of life if you want more good days than bad!
Thank you Nannainpain for your advice. Got my first physio session over the phone in 3weeks time- not sure how that works but will soon find out lol. Take care x
As ruthiepooh says, pacing is the key. It is difficult to train yourself to do it consistently but it’s the only thing that works. Read a bit on spoon theory as that explains it clearly. We’ve only got so many energy units for 24 hours, use those up in the first half of the day you’re done for that day.
Wow - reading about Spoon theory and I’ve never felt so seen! This explains perfectly how I feel. It is so nice to finally have people who understand. Thank you
Hi NG. It sounds to me as if you are trying to do far too much in one session and totally overloading your body's capabilities. You have to not think about what you used to be able to do. At the moment that is no longer relevant. Start with what you probably consider tiny amounts of exercise, say five / ten minutes and see how it goes. If all is ok the next day add another 5 minutes and so on. You may find that you build it up and then suddenly its too much again. Thats the time to haul back and give your body a rest. You will be able to build it up and manage your different kinds of exercising but I would suggest just walking and gentle stretching.
Thanks so much for taking the time to reply. I think the advice to not do too much and take regular breaks is the answer. It’s a shame as I won’t ever get as fit that way but what can you do! I now force myself to stop what I’m doing and just sit or lie down for ten minutes before continuing with my activity. I do think it has been helping.
I am the same, but I have been taking cbd oil in the evening and the past 2 times I've exercised, it's not been nowhere near as bad! Only started the cbd about 2 week ago, but before that I'd exercise and feel so so ill. Maybe do some research on cbd to see how it can help (it's legal) not the dodgy stuff 😂 I bought mine from harmony
I wouldn't have thought so as cbd is a natural product, but you're best of doing a bit of research before trying anything. And personally I wouldn't have thought savers cbd would be good quality, I paid 25 for 10ml from harmony cbd website, it's top quality stuff. I ran out a few days ago and I can tell! I really wasn't expecting it to make much of a difference but it certainly did, I've ordered some more 😁 definitely do some research on things before trying them xx
That’s interesting, I bought some CBD oil after reading your reply but I don’t think it does much for me. Have read it works well for some people though so maybe I’m just unlucky ! Glad to hear it’s been working for you
The Original Alternative. Used to be CBD Brothers. Just about to have a Zoom call but I will get back to you with more detail if you are really interested.
I find swimming to be the one exercise I can do without feeling rubbish afterwards. So once the pools are back open, that could be an additional option for you.
I’ve also recently bought a small trampoline/rebounder and this is surprisingly effective and fun! I only do a few mins a day but it gets the heart pumping and makes you keep your core engaged. It’s brilliant!
Hope you find something that works and you manage to master the pacing xx
I don't know that I can add to what has already been said, but I just wanted to sympathise with you, and share my recent history to give you hope. I had a major flare just before Covid hit the UK last year. I could just about get up and walk to the sofa - with rest stops. Before, I loved being outdoors, have two horses and teenage twins. I couldn't do anything. Migrains that lasted for weeks. After six months of very slow progress I thought I'd have to rehome my horses as my elderly mother couldn't do it indefinately. Fast forward to now, and I'm managing. It's not as easy as before, I can't ride yet, but I do feel I've learnt my limitations now. I've also learnt the first warning signs I need to stop - and I don't ignore them now. My recovery, surprisingly, took a big step forwards when I finally accepted Fibro was here to stay. I started focussing on what I could do, literally telling myself well done, when I achieved even the smallest things. I found accupuncture very helpful for tummy probs and migraine/nausea. I hope this doesn't sound 'preachy' but realising I have to accept it, made such a difference. Take care.xx
Thank you so much for taking the time to reply and for sharing your experience! Seems accepting the Fibro and not doing too much are key. Never tried acupuncture for stomach issues, would love to know more about that.
This Fibro Guide by the Uni of Michigan was highlighted on another post by spzgirl51. I’ve not had a chance to read/review it all myself yet but it does look interesting - there is a module on exercise:
I now have this guide open in a tab on my phone at all times, it has so many useful articles and I’ve already learnt a lot. Thank you so much for sharing.
This post and all its replies have been so so helpful. This is my biggest struggle atm. 2019 I was running 14k yes I had pain and no sleep at night but had no idea fibro was behind it. 2020 I began struggling with energy breathlessness during exercise and taking days to recover. I decided I must be unfit! Ridiculous really. I stopped running in September as I was low and at my wits end. Diagnosed a month ago so thought I'd try running again but far shorter distance and I can manage only 2.5k as my body becomes like lead and I'm exhausted and more painful for few days after. Coming to terms with the new me is incredibly difficult and upsetting however when I read others posts I realise om incredibly lucky to even be able to do that twice a week. Very very hard to accept the change and develop a new me but I'm actually focused atm on the fact I can do that incomparison to some. I'm learning to try to take a step back from who I was and my previous capabilities and be thankful for the things I find I can do. I hope this helps. It really helped me when a member on this site told me to think about the new me. It really has.
I too have found all the replies on here so helpful. Really feel ‘seen’! Sorry to hear about your experience with Fibro. I can’t run either - makes me feel awful, but I can manage a (fairly) brisk walk every day, which I feel keeps me fit and I really enjoy it.
Hi NeutralGazelle I know exactly how you feel I use to do so much exercise. Swim 100 lengths a week, hot yoga plus the gym. I find it so hard that I can’t do any of this now. My limit is a lap around the park on a good day with the dog which only takes about 15 mins. I find it really difficult not being able to have a routine too. Like exercising on certain days, meeting friends, helping others etc.(not that we can do much at the moment with lockdown ) Constantly cancelling thing because I feel so unwell. Such a cruel and debilitating illness. Sorry to be so negative but I’m having one of those days. It’s all about what you can manage now and not what you did before but I just really struggle to come to terms with that. On a positive note this is a very good site and it’s interesting reading what everyone else has to say about their own experience. I wish you luck!
I hope you are feeling better KellyM46. I completely feel your pain - my friends roll their eyes when I say ‘I’m tired’ every single time we meet. I get having to choose where you spend your energy each day. If I go to the gym I cannot socialise in the same day, it’s just too much. People don’t understand and it is difficult to explain. This platform does help you feel like you’re not alone though. Just do what you can and take care of yourself.
Thanks so much for asking NG I’m still not great to be honest. It doesn’t help that I have a fibroid and a preop next week so may be going in for a hysterectomy in the next few weeks. How you doing?
Oh no so sorry to hear. I really hope it all goes well. Surgery and recovery is a tough thing to go through. I’ve had a few flares this week, trying to ‘accept’ my Fibro life as others have suggested but I still hate feeling rundown all the time!
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so sorry to hear. I really hope it all goes well. Surgery and recovery is a tough thing to go through. I’ve had a few flares this week, trying to ‘accept’ my Fibro life as others have suggested but I still hate feeling rundown all the time!
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