Hi all. So I keep reading and being told by health professionals that exercise is good for fibromyalgia and that social interaction is good for my anxiety and depression, but although I try to do these things it ends up making me so ill. So for instance I visit family or friends for a couple of hours or I go shopping or I go on a walk or I do housework and then I’m bedridden for 24 hours due to extreme fatigue and nausea and not feeling okay for maybe 48 hours. Is this fibromyalgia. I’ve often wondered about CFS but the last gp I mentioned it to said CFS is just the same as fibromyalgia? Surely there’s different strategies for both these conditions and maybe I’m doing the wrong things. Thanks for reading xx
Is this normal?: Hi all. So I keep... - Fibromyalgia Acti...
Is this normal?
53 Replies
•
Hi there, not sure where to start so here goes. CFS does have a lot of similarities to fibro but they are not the same. In very simplistic terms Fibro is more pain CFS is more tiredness and exhaustion. Yes you can feel tired with fibro. But the tiredness with CFS is way way different in my own experience.
Is exercise good for fibro. I would definitely agree.
Is mixing with people good for anxiety. I would agree.
But both are very simplistic diagnoses to not very simple problems unfortunately.
If it was so easy we would not have. Almost 6000 members just on this one forum xx
Momo
• in reply toDizzytwo
Many thanks. That’s what I thought. My fatigue is way worse than pain. I have a gp review tomorrow, I think I need to get more assertive…
Patdoyle• in reply to
I second all that dizzytwo has said. I have CFS and fibromyalgia and the fatigue at times is dreadful. I go for a walk every day and being with nature really helps me. However I could not walk around shops for long as for some reason I get panicked but on my own down country lanes I’m ok. The fatigue afterwards isn’t good but at least I’ve gotten out and chatted with dog walkers and other people. Previously I had sat at home month on month doing very little. I was depressed too
I never know whether my symptoms are fibromyalgia or CFS but I blame the pain on fibromyalgia and the rest on CFS. My GP is sympathetic but I think I know more about my condition than she does. I hope you get some help from your GP.
• in reply toPatdoyle
Thank you xx Ah yes, I’m the same - shopping, peopley places are the worst, wipes me out. Walking about outside is tiring but not half as bad
shazzafloyd• in reply to
Hi I'm new to fibro or should I say I finally got diagnosed along with underactive thyroid when u say u feel wiped out orgreadful fatigue what do u feel like. I've been feeling really weird for few months now I bin put on pregablin not sure if there causing the feelings sorry if I have butted in on your coverstion
I am exactly the same. Currently trying to get a diagnosis for fibromyalgia but not getting anywhere with my GP. Sending good wishes your way and following your post x
Hello, I have both fibro and CFS. It is difficult to mange both! I have to split my activities into several different chunks, for example, housework, do 5 minutes, then rest for 15 minutes. I know the temptation is to get it all done in one go and then rest, but breaking it up can help prevent the post-exertion fatigue where you end up bed bound for the next day or two.Your doctor is wrong in saying they are the same, they do have overlapping symptoms but are different. Could you see a different doctor?
• in reply to
Thanks for your reply and advice. Two drs at my practice now have refused to look into CFS. I give up! I’m just going to try help myself now and accept support from others more. Best wishes xx
ArtfulLyricist• in reply to
I would seriously look into changing GP practice if you have another local option. Look up the doctors at your surgery and others and see whether they have any that specialise out lean towards musculoskeletal/rheumatoid/arthritic conditions. I also, these days, street clear of older GPs; definitely not ageist as I'm 60 myself, but I do find in a lot of cases that add they start getting closer down the hill to retirement, they don't always bother to update their knowledge on the newer conditions and can also be very arrogant and "stuff upper lip" about whether we're really suffering at all or just malingering.
I have both fibro and CFS plus Hashimoto's Thyroiditis, which also destroys your energy and gives you brain fog. Definitely a scrap heap challenge or two here 😂😂
Good luck finding a doctor who can help you, refer you and adequately and suitably treat you xx
I think exercise is good for fibro pain but difficult for fatigue. You have start very very small and build it up very slowly. I can exercise as much as a non fibro person but I do get "doms" style pain everyday but I consider this type of pain worth it for the positive benefits of exercise. Fatigue is a much bigger problem I think, I need parts of the day to rest. Housework is the perennial problem. Its hard sitting in a messy room all the time and feeling unable to fix it. But I have to choose between each bc I can rarely manage both.
Weirdly I've always thought my anxiety, depression and social phobia were down to childhood trauma and chronic pain. However it transpires that I may have ADHD.
One doctor said all fibromyalgia patients should be screened for ADHD bc there's such a strong correlation. It would explain so many things like especially the mental/social problems and why they tire me out so much. It also explains how I have been able to have social phobia but have always liked the company of others? So at the age of 46 I'm having to reasses everything I thought I knew.
• in reply toCat00
Omg Cat00 that was like I’d written that entire post myself (although I’m 48 not 46 lol) xx
Cat00• in reply to
If I were you I'd do some reading around Female ADHD, it also explains my life long insomnia and migraines and my extremely intense emotional responses to other people....
That's interesting. I'm liking your doctor ☺️ I've been wondering about ADHD too. I asked my GP for a referral and apparently in Oxfordshire, it takes 3.5 years to get seen by those able to diagnose it! So I've completed and returned to my GP the questionnaire and started that is like to go ahead with the referral, so watch this very big space 🙄 xx
Yes in Cambridge we have 4 times the national average for Autism Spectrum Disorders and ADHD, the current waiting time is 7 years for adults and 5 for children. We think my daughter has ADHD thats how we discovered mine, which is classic apparently. The average age a women is diagnosed in the UK is 35 and that is because that is the age they tend to get their daughters assesed. My daughter is 9 she'd be taking her GCSE's by the time she was diagnosed, so naturally we are looking into getting a private diagnosis. Currently they are saying that it would cost £3000 each, so we may have to not bother with mine. Its crazy.
Having said that, it still is mindblowing to me that I was not identified earlier. I appear to be a textbook example of female ADHD. I was in mental health care from the age of 19 to 35 and they never picked it up, I was diagnosed with so many other disorders over the years until they ended sending me to the Complex Cases Service which is where they send the patients they couldn't diagnose. Hopefully it will be able to help my daughter even if its too late for me!
• in reply toCat00
Wow those wait times are horrendous 😔 I’ve been told just over 12 months and I’m in West Lancashire. Feeling very lucky now. I’m not sure if this would be any use to you both adhduk.co.uk/right-to-choose/
I think there’s going go be a lot of undiagnosed or misdiagnosed out there, which is really sad not just for the individual but for society as a whole.
Cat00• in reply to
Agreed, I was diagnosed with Borderline Personality Disorder 20 years ago, 97% of us were female, they used to tell us that that was because the men with BPD were probably in prison. I know now there is a theory that all BPD patients are actually just incorrectly diagnosed Female ADHD.
Thank you for the link I will most definitely look into it!
Thanks. This is so helpful to me as it explains some past stuff I have always wondered about. I didn't know about doms pain, but thinking back when I did do a fair bit of exercise, decorating, gardening etc there was always pain and often acute stiffness after doing anything fun, especially with dog and kids. Had my third child at 41 but three years later was going into perimenopause which I also thought was responsible for the exhaustion and other problems.
Several years on, I have never been sure when the fibro started kicking in as was enjoying walks in the new area we moved to, but then it was like a landslip into a state of un-wellness and depression which made me think I may have the beginnings of a life threatening illness, but, not so, as my doc sent me to rheumatology and a positive fibro diagnosis (why do some docs find this so difficult I wonder?) - Momentary relief that it wasn't life threatening did not last long! Now at 77, walking my own chosen distance if there is the energy to do it is quite a treat and at the right time of day helps sleep at night. - Your ADHD mention makes me remember posts on here that have, very helpfully made me aware of the effects of cortisol, a thing that is both helpful and tiringly stressy sometimes. - I do believe that childhood histories can set up a pattern we follow into later life. Looking back I have awareness that mine set up sleep patterns which my Fitbit watch data has made me more aware of. Conclusion now mostly, that exercise and hydration at the right times of day help get slightly better sleep and it's the Deep sleep we need for the best physical repair, though light sleep allows muscles to relax and also repair to some extent. Still not sure how brain fog fits in with this. But for what it is I offer my fuzz brain take on exercise.
My neurologist says I never enter into stage 3 or 4 sleep. I can't sleep for longer than a 2 hour stretch. It's been like this for 20 years so there's not much hope for me in that respect!Of course childbirth itself has been known to trigger fibromyalgia, but I have had mine since my childhood so can't blame my kids for that.
It's interesting how fibromyalgia pain can mimic DOMS, I think it has something to do with our faulty mitochondria, but who knows. 🤷.
All I know is we can get used to anything with enough time. I'm a 5 foot 2, 46 year old woman, with more health conditions than fingers and I can bench my over half my body weight and leg press over my bodyweight. Last year I was I'd just broken my ankle for third time and discovering I had severe spinal fractures from Osteopenia, if you want something bad enough...
Oh my goodness! That is a heavy load to bear (or bend) either way. I cannot begin to imagine how you cope with it all and for so long, except that you must have a great deal of determination and I'm thinking that that kind of energy has a great survival value. Also if someone has an unusual collection of cells that nevertheless power things through for them, they and their descendants are well set to reproduce themselves and keep going no matter what. - A friend of mine has a son diagnosed with adhd. She has so much mental and physical energy herself it is mind boggling. - My son and myself both get migraines too and our genetic test with 23andMe show that we have an abnormally high percentage of 'remnants' of neolithic dna. No idea if that is significant but I have read and also heard that unusual personality traits have had some advantage for the individual and their society. - Meanwhile, my son and I are looking at food manufacturers and some producers as a cause of much unnecessary sickness in the populations of the world, but there I know I must stop.. - Many thanks for your reply. Lol, the only thing I've ever broken was my coccyx but I didn't think I had! I think even if a person has fibromyalgia, it is impossible to still get a handle on what the experience is like for so many others so this forum gives me a sense of reality. Rest well.
Blimey neolithic! I wonder what it as means...
There's brainfog for you! The right word was 'neanderthal'. They were the race that didn't survive because homo sapiens was cleverer but obviously some hanky-panky went on between the two so I've got the remnants of that along with my son and the daughter of a first cousin on my Dad's side. Am glad I did 23andMe. It shows so many connections and they do give you a some small info about potential health risk traits.
So far though, I get to understand that we are all survivors who won the great sperm race up the fallopian tube to get to the egg first! Our various health conditions are therefore worth looking at by science to see where and why we got it right, as well as those traits and conditions we brought with us that make us suffer. Chronic suffering is making us share our minds, even our fitness techniques on this site. That is still quite some evolution that we're part of!
Bless ux i just try to walk everyday if i can, pace yourself and just do what you can. I had hydrotherapy which helped doing gentle exercises in warm water at the paddock pool. I hope you can find something x
• in reply tofibrogirl41
Many thanks fibrogurl41xx
Hey PTT, I know exactly how you feel! 🥴 I'm also coming to the conclusion that something very strange happens to your health as you hit your 40's! Maybe that's just women, I don't know. I agree with others that GP's really don't understand fibro or CFS and if they don't have it themselves, how can they! It feels pretty hopeless really 🤦. I feel like I (and everyone else on here) has tried everything to 'out wit' how dreadful we are feeling with little or no success 🙄. Listen to your body and take one day at a time. Sending gentle warrior hugs because we are all brave warriors fighting to live our best lives 🤗 x
• in reply toLoobielu
Thank you Loobielu. Having support from others who understand is really lovely. I’m just trying to go with the flow now, accept the good and the bad, and definitely don’t have any expectations on how things will unfold on any given day! xx
Loobielu• in reply to
Yep I hear you hun! It's all we can do hey x
Hi PurpleTimeTraveller, Just want to say thanks so much for posting. It is really difficult indeed! It still surprises me when I have a really bad post-activity fatigue and my whole body vibrates with pain for things that seem so minor activity wise. I do think movement (i.e. yoga and tai chi) are supposed to be low impact and help us build fitness slowly and that getting outside and chatting to others is important for our mental health. I am learning too that in addition to trying to add activity in to try to regain fitness - I need to equally work to 'soothe' my parasympathetic nervous system which for whatever reason may be remaining in an alarm state despite there not being an external threat. I had been trying to add activities physically that stress the body without the mind/body soothing actions. So I have just started to do nidra yoga (via youtube), to intentionally refocus my senses on the details and boringness of everyday objects around me, to identify the people, places and things that create a sense of safety and well-being in me and to engage more with those (and less with those things that do the opposite), to cut back on trying to save the world and get a gold star at work and to identify (and feel) the perhaps under-processed feelings I have related to prior and current traumatic/stressful experiences that I have neglected allowing because they 'don't seem that big a deal compared to people in war zones.' I'm hopeful that, in time, with more emphasis on soothing and healing and doing the things that decrease the internal stressors that contribute to pain escalation, I can put a little more healthy stress on my body to regain strength and functionality. Thank you for posting. Seeing that I'm not the only 48 year old out there who is feeling this way has really helped me today.
• in reply toMommaK75
What a beautiful reply MommaK75. We’re complex beings aren’t we? I did used to do qui jong(sp?). Perhaps I could start that again. Do you know Gabor Matè? I’ve been watching some podcasts of his and he speaks a lot of fascinating truths. I do a lot of meditations, yoga nidra for sleep sometimes and I also find journaling helpful. I find societal pressures challenging but am beginning to let go although in times of pain and fatigue it’s hard. I guess it’s one day at a time and trying to stay positive despite our struggles. Much love xx
CFS/ M.E and Fibromyalgia are two different conditions but with some similar symptoms.Unfortunately, many doctors , even pain and fatigue " so called " specialists aren't that knowledgeable and lump the two conditions together, usually because Fibro can cause chronic fatigue but that affects the body and is improved in a different way than the Fatigue of CFS as an illness. You know you could do with seeing a different doctor or physio if they make a remark like that because they will never help you find the right balance of activity and rest to help both conditions.
Fibromyalgia is improved with daily gentle exercise within your comfort zone . Fatigue and Pain from Fibro can usually be improved by well paced activity and increased gradually as your strength improves and the initial exercises you do get easier.
CFS/ M.E can make it hard to do much exercise because the Fatigue it causes gets worse if you try to increase the boundaries of your comfort zone.
People whom have both conditions need to be very careful to listen to their bodies and understand which condition is flaring up.
They also may need to change their pace and do much shorter activities with plenty of rest in between or they can end up yoyoing between busy days and then painful bed days.
Visits or trips out need to be shorter with plenty of rest stops and you need to consider how tiring your travel will be. Exercise needs to be gentler and only continued for 10-15 minutes with rest afterwards. Things like housework need adapting as you may only be able to do 10 minutes of a chore at a time with a need to rest after that , so you may find in order to keep your energy and pain levels consistent that certain jobs need doing over a full day or more.
• in reply toBlearyeyed
Many thanks for your helpful reply Blearyeyed, it’s much appreciated. I’ve seen 2 gps now. My visit today was ‘there’s no point in trying to diagnose you with CFS, a specialist such as a rheumatologist will just say there’s nothing they can do.’ I mentioned it would be helpful to me though to gain support and tailored advice but he refused to take it further. I’m just going to try help myself now and draw on the support of others xx
Hi PurpleTimeTravellerI feel that Bleary-eyed has said it very well. My daughter has both ME/CFS and Fibro as well as other things. She needs to exercise gently for Fibro but not for CFS.
There has been new guidance for people with ME that exercise is something that needs to be done very gently and kept at the same steady pace. My daughter was told by her ME specialist to exercise and to slowly increase this so she would get better. This was stopped about 3 years ago as research had shown it makes ME much worse and there is no safe limit. I really feel for people with both as it is very hard to pace things right. I know as my daughter is always crashing. She is 27.
I feel lucky in a way that I have just Fibro and as I am retired I can please myself when and what I do.
My heart goes out to all you suffered out there.
Love and comfy hugs.
❤️🫂
• in reply toLillylilac
Thank you Lillylilac. Sending you and your daughter love and hugs xx
CFE MS. PLEASE CAN U TELL.ME WHAT CONDITIONS THERE ARE AS I HAVE FYBRO BUT WHEN PEOPLE TALK OF THESE OTHER 2 CONDITION I DONT NO WHAT THERE TALKING ABOUT SORRY
Hi Shazzafloyd CFS and ME are the same condition It's called ME in Britain and CFS in America.
It's Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.
If you type it in o Google it will give you an explanation of what the symptoms are.
Take care Lilly
Ow thankyou
Hi , I was like this with fibro and arthritis. It's took me along time to start slowly . When I dont have a flare up from fibro and arthritis I fine lane swim helps me . I'm in the slow lane I pace myself and take everything slowly starting to learn more as I go. Also with advise from this site has really helped to.
I've read your post with such interest. Thank you for raising it here...I have fibro diagnosis and CFS and live by pacing... all very well but so many tasks are left!
I hate my home being so cluttered which does irritate my composure... I employ a cleaner for hoovering and all heavy tasks where you need 'a bit of welly' I'm v fortunate to b able to afford this but even creating a snack or washing up is too much most days! My nutrition is a worry as I try and eat healthily but can't chop a vegetable! Shopping has become more expensive, to buy already grated/chopped foods...
I do walk consistently now for health and to get my health appts which are numerous... however aftr talking intensely to a medic the walk home will end up with me almost in a trance state as my fatigue is so severe... It's become so frightening...
Obviously once home I rest for hours& keep many days in wk empty to try and focus on myself... Just pottering is great 4 me but then I nvr leave the house! I get so lonely and depression lurks...
It's not a great recipe to live fruitfully, is it?
I'm lucky I have a lap based hobby!
Hoping you do too?
I try and enjoy Nature and beauty all around but it's a difficult existence to balance long term???
I choose not to live by drugs so utilise rest and heat to keep me in check...
I achieve v little but these recent blue skies hv helped... The Autumn gloom is a depressing thought?
Sending you all gentle hugs to keep facing forward as I attempt the washing up!
Only achieved a hot drink so far...
Terrible insomnia leads me to get up and then sit for at least 3hrs! Productivity is pretty low...
Does anyone recognise my story here?
Dear PTT I'm so sorry you too have to rest so long aftr a social interaction...
I've just had a holiday w my partner (we don't live together!) and I've needed a virtual 14 day period of recuperation!
It was lovely though and I recognised this would happen & planned nothing more...
Balancing our symptoms is such a 'pain' isn't it?
I sometimes laugh now aftr my professional career that I now wear out slippers & dressing gowns!!! Ha ha ha
Take good care XxX
• in reply toWobblygirl
Hi Wobblygirl. Sounds like you have a positive attitude despite your struggles, that’s good. I too struggle with my house being a mess. I feel better when it’s clean and tidy but I guess I have to accept my limits. I’m very lucky in many ways and try to find gratitude for all that I have the things I can do. I relate to insomnia- I sleep a an hour or two then awake for hours then back to sleep for a couple more. Resistance and worry are my biggest foes I would say, but hey I’m always learning! Much love xx
Wobblygirl• in reply to
Bless you...I agree with yr sentiments on gratitude.
I try and appreciate the moments of loveliness in my world and thank my myriad of cushions constantly!!! Their comfort is invaluable!
Thank u for replying PTT it's so lovely to feel heard and to recognise we're not totally alone on this journey?
I trust sleep/snooze arrives for you v soon xxx
Waving with my better arm to you I'm hoping do v little today as arms are throbbing; so this msg has to end! X
Hi Wobblygirl, I relate! I have cfs/me and Fibromyalgia among other things. It's hard. I do affirmations, and (short) journaling when I am able to write, to help my mental health. I've given up guilting myself for not being able to clean the house as I want to and have had to lower my standards. But I've come to a place of peace and acceptance with that.Hugs 🤗
We keep trying don't we, but it is SO HARD isn't it?Strength and gentle hugs 4 us both tonight xxx
Aww, thank you Wobblygirl. It truly hard and we keep trying as you say. So we are warriors because we are still here, still trying, still loving in spite of everything thrown at us.With love and hugs xxx 🤗
XxX
With regard to health professionals, best to smile sweetly and wait for your own mind to inspire you (or this website). The important thing in the now is to 'trust' in your own ability to negotiate the quicksand of symptoms that is always changing, just like you've been doing from your description.
Do it your way! For example, a description of meditation I heard the other day, it just is about being comfortable and still, and spending time thinking inwardly or even just sitting comfortably looking around and being aware. - Professionals just have to go at things like that like a dogs with a bone so they become stressy. - Housework is a most demanding thing with lifting, changing of postures and direction all at once sometimes. Very, very, very demanding stuff and if we don't do it there is the big catch-up to be faced. I am still working on that one! Don't know the answer to it except to validate the helpful exercise type of activity part of it and planning actual 'time out' on your calendar or diary to relax. - The nausea you mention doesn't sound very nice. If it is to do with your inner ears and makes you dizzy at all that's fixable with the Epley maneuver which I recently learn't off the internet after my acupuncturist asked me about how my ears were, - which two doctors didn't. - But nausea could mean lots of things. You could post again about that. I found Momo's explanation of the differences of fibro and cfs made sense to me as I know someone close to me who has come back from that and ME. Sleep well tonight. 🍊🍓🍇
• in reply toKimiJay
Thank you KimiJay. It’s nice to hear from others here, it definitely helps knowing I’m not alone xx
I don't understand how exercise is possible with fibro? Just doing daily activities to look after myself are draining so how am I meant to do additional exercise?
Start very tiny...And praise these tiny steps as you achieve your home tasks.
I can walk better aftr yrs of trying to do graded walking but my legs are stronger than rest of body!
Upper body is v weak and can't lift above shoulders, so I do understand yr question totally xxx
Jelly arms giving you a wave of encouragement X
Looking back I can remember that situation. It did change but I can't remember how. The best advice I had was from a cardiologist I saw after I had a spell of fainting. He said that if I couldn't exercise, then just to potter. I found pottering is ok and quite a while before that when I found out about d-ribose on google and started taking that, it also gave me a bit more energy to do stuff for myself so that I could sneak in a 'bit' of a walk here and there. - Cut off time for the gentlest strolling and d'ribose about 4pm so you can sleep at night. Suggest gen up on hydration too, and potassium so that when you do get your land legs again, you treat yourself gently so that flares do not swoop in on you too often. Hope this helps.
Hi yes exercise is good for you not strenuous exercise other wise you will just stiffen up and gain weight which isn’t good for you. Mixing with people is good for you it’s good for your mental state. I got referral from the Doctor to classes in the local leisure center that help us keep mobile, it’s not the gym nothing like that you do what you are able to do it’s really worth it and you are meeting other people who are in similar position. See your doctor if they do it in your area x
• in reply topaula9087
Thanks Paula. Thanks for your advice. The fatigue after any sort of exercise is so overwhelming, but I do what I can and when I feel able. I’m happier on my own, not much of a people person, mixing with people really wipes me out and makes me feel poorly so I limit that activity. Best wishes x
Elaine200756• in reply to
I like to have periods of pottering with rest in between xx
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