I was diagnosed with Fibromyalgia in November following several years of pain that I had attributed to hyper mobility, bursitis, muscle pain and IBS. Up until October, I swam 3-4 times per week and did yoga at home a couple of times a week, as well as being active with walking and working. I fell at work at the beginning of November and within a few weeks the pain was so widespread I couldn’t move or sleep and had an ambulance to hospital. Since then, my pain has been pretty constant, my sleep is erratic and I am constantly fatigued - I know it’s the nature of the beast, but it’s slowly making me feel like I am losing myself.
I went swimming yesterday, I did less than half of what I used to do, and today I am so stiff, sore and tired that even going up the stairs to the bathroom is torture. I am desperate to become more active, I miss it, it helps my mental health as much as my physical health (at least it did!), I had lost so much weight from doing this last year but it is slowly creeping back on and I really don’t want it to escalate.
Can anyone offer me any advice? Does it get easier? Should I persevere with it? Or should I stop and wait for the pain to subside?
Thank you all in advance
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LJC-xox
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Hello, it can be hard to get back to what you used to do so perhaps just keep at “doing baby steps “as the saying goes , and see if you can progress slowly, have you tried say a video on utube doing some gentle exercises and then have a warm shower or bath after ,then a rest period . I know we try and keep moving as the weight can creep on , hopefully with the warm weather coming this may help you too xx
Do less and do it more often. Find gently activities that you can bear and dip into and out of at will. Dont do an hour long yoga class because you used to do it. Do 15 minutes or less with some gentle stretching. Work up to doing 30 minutes over time and listed to your body.
I came on here because I have similar problems with lack of activity and the feeling of losing myself and not being able to do anything the old me used to do… I find the advice Des gives to be really practical and useful - thanks, Des! ☺️
no problem, it is the same advice that we put in our patient information booklets for the charity and promote. Also find something you can enjoy as well. Walking if you like the outdoors, yoga if you like the company etc. Make it less of a chore and it will be something to look forward to.
Agreed I was told to go to the gym had a personal trainer who knew my condition and after three months twice a week I could not get out of bed was struggling to walk and had dreadful tremors .I had to stop going to the gym I found warm baths with Epsom salts gave me temporary relieve.
Have you ever tried a vibration plate? Some people don't tolerate them very well but I've used them for years. Find them really easy to use & modify to suit your needs.
When the muscles are so 'tight' & painful I find just doing a few minutes is enough to relax/release them, kinda like how it feels stretching them out but using the plate you are actually strengthening your muscles at the same time with minimal effort in the shortest amount of time. Hope that makes some sense ☺️
We have some at the local gyms, but also in the rheum./fibro clinic, and it took a little getting used to, but was fun, I quickly managed to get on and off it on one leg, pretty advanced, and I agree with CheetieCat. A different way of getting tight and painful muscles looser I learnt from my acupressurist was a kind of loose shaking dance, just using toes/feet, like a puppet being jerked, really everything as loose as possible, for about one minute, or even 30 seconds - can work wonders, I find... Weird, ey?
Firstly, wait for the "overdoing pain" to subside and try to avoid it in future by keeping to the sweet spots of each "activity" (incl. socializing, whatever) (which may seem to be invisibly moving targets, at least at first), or know the limits and how far you can go over them.
Then baby steps, gentle, less long and more often, all agreed, definitely. Two workarounds:
I do sometimes take part in classes (in my case back exercises/stretches), but only do 30% of what the others do (altho they are 20 years older than I am...), I take breaks, even go out, or just lie there, or do other softer exercises, don't compare myself to others, just to myself. I talk to the instructor to explain. The first times I ended up crying from the pain several times in a session. It takes bravery and self-assurance, which is a good part of the mental process, to learn to say no to fast and hard, and yes to slow and gentle.
I have a list of 20-30 exercise types (incl. breathing, relaxation, stretches etc.) and do these while doing other things, waiting, working, whatever. Whether >5h per day or 'only' 1.5h. But I keep moving, keep stretching. And on good days I can test and see that I still have all my strength, all my fitness, and am still faster, stronger & tougher than most people of my age. I try to play table tennis every day. After my full flare started, I was down to 4 games (from 10), with long breaks between each game and my mate picking up the ball most of the time (I can kick it to him). Supps and acupressure got that up to 8 games with no breaks and picking up the ball myself. The first jab brought that down to zero, after 5-6 weeks 2-4 games, getting the ball picked up, now the 2nd similar, but I've decided to try to play every day until I feel the limit coming on, and that may be after 1, 2 or 3 games....
Good morning... I find doing too much exercise in one go just makes things worse the next day. As lots of people have said, it's best to do short periods, I've found a good soak in an epsom salt bath beneficial. You might find that taking magnesium can also help a bit... be careful with that as it has a laxative effect. I use magnesium malate powder and take small amounts a couple of times a day- you can get a set of tiny measuring spoons. like 1/16. 1/32 of a teaspoon. With regards to swimming, you might find the temperature of the water is too cold that doesn't help, but a hydrotherapy pool might, if you can find one locally.Is it going to get better... it goes in fits and starts. The onset is probably the worst for pain, i.e. stuck in bed in the morning... a stiff as a board... then there's other symptoms which might appear. Some people have milder symptoms than others. Continue with easy yoga stretching if you can... but don't over do it.
I've read that qi dong chinese exercise can be beneficial, haven't tried though.. might be worth a try. Chin up... you're not alone. x
Hi I was diagnosed end of dec with fibromyalgia I'm finding it so hard to come to terms with but doing everything in my power to stay off meds and to keep living my life as normal as possible.I loved to run , cycle do aerobics and walking, like you I’m finding this so hard to do . I’m starting all over again with mobility and strength exercise for beginners I’m on my second week and it’s working ,its hard to except I’ve gone back to basics but I’m now happier i feel stronger not as much stiffness and pain I do it ever other day . I have also bought a weighted blanket which I highly recommend my sleep is much better . I have also had two session of soft tissue massage which relaxes me . I also bought myself an I pad so I’m not using my phone as much as the pain has affected my hands and fingers this is also easier for me ,I take the pain killers when needed . I am also listening to my body and putting myself first :I hope this helps you as it has me as I understand how you feel , and warm baths before bed is lovely ,good luck with finding what’s right for you xxx
Hi LJC-xoxI use a dvd of gentle exercise designed for hypermobility. By APPI Glen Withers. Pilates for hypermobility. I find it useful. Please check with your health team before using.
Not all people with fibromyalgia have hypermobility but if you have this may be worth trying.
Although I am much older than you I feel very frustrated with having to cut my excercise right down. I have found that stretching on my bed is more comfortable than my usual yoga on a hard floor. I found it better than nothing.
I understand your frustration, I personally find that a change in how I think about my body helps.
1) I think of my body as a battery, whenever I exercise or do any task at all it is the battery charge that keeps me going.
2) I have learned that when my battery gets below 50% I am going to be bed bound for a day or two afterwards. If it gets below 33% I can spend a week or two unable to do anything.
3) I think of FM as having a faulty charger for my battery/body. Charging up is painful and takes time directly proportional to the amount of charge I used up.
4) I have to remember that many everyday activities also deplete my battery. I.e. having a shower, getting out of bed, walking downstairs.
If I can only charge 20% per day minus daily activities it gives me an idea of what I can do that day/week/month.
If something happens in my life that really depletes that battery below 25% I know I must stay resting till I’m fully charged up again.
I hope this kind of helps, you will learn your body and how much exercise depletes you. Once you’ve got the hang of it, then you will once again find the beneficial side of exercise.
Luv it! Thinking in percentages (and noting their course on my blog) helps me understand my body too. E.g. of feeling subjectively well (70-90%), of mental agility (90-100%), of physical agility (10%- max. 40% compared to pre-fibro). Your battery comparison is much more helpful than the Spoon Theory. (Is % just a guy thing?? :-).)
Try and find a doctor you can get along with and that understands you. If this has been done ask to be repaired to the pain clinic and talk through your concerns with them. Also see if you can get some CBT to help you deal with pain that most likely won't go away. Try meditation yoga. (It does sound a bit hippy dippy but search. You Tube for help with guided meditation and yoga for beginners or people who have limited mobility. A positive mental attitude is difficult to find but can make the world of difference. If that is a recent photo of you don't worry about the way you look for at least 20 more years 😉
I sympathise with you and understand the pain issue as I’m riddled with it and at times it can take my breath away so I take magnesium malate, NAC, MSM vitamin D 3 and ibuprofen to control the pain I also take vitamin B complex and folic acid. This seems to keep my pain at bay if I don’t take them I’m in agony.
Does it get easier? At times - yes. At times - not so much. There are some really good tips here though and I've found after nearly 24 years of FM that it's all about moderation. Personally flaring right now because I went to the gym last night after a bad day at work and forgot that part!
When you have a good day enjoy it. If it's been a good week or month - maybe add in a little something extra but realize you may not be able to get to where you once were.
When you have a bad day - also accept it. Respect it and nurture it, but don't let it run you over.
When a flare happens to me unexpectedly I try to figure out what I did wrong and how I can help prevent it next time but ultimately I do know they will happen and sometimes even planning cannot help me escape it.
For exercise, I've found shorter periods work well. Also realizing that strength training might not look like what it once was and cardio is HARD after a long day. Give yourself a bit of a break and be proud of showing up - even if it is for only 10 minutes in the morning.
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Hello everyone, i have missed you all so much
Recently diagnosed...So much to learn 
Is it normal to sleep so much?
I'm so tired and in so much pain
Newbie, do I need to see a rheumatoid doc for firm dx, GP not much help?!
