Hi can anyone help?

Honeybunny Member Posts: 2
edited 28. Nov 2023, 14:06 in Living with arthritis

Hi I have been in chronic pain since 2019 that has now got to the point that I am now off sick from work and no medication is working . I was diagnosed with ME and fibromyalgia in 2020 but am in constant muscle pain with chest pain, breathing problems, RLS pain in my head ( pain when touching it ) and migraines . I was just wondering if this really I’d fibromyalgia as my doctor is no help and I’m only 41 and feel useless ....


  • Mike1
    Mike1 Member Posts: 1,992
  • Anna
    Anna Moderator Posts: 968

    Hello @Honeybunny and welcome to the online community,

    You've been diagnosed with ME and fibromyalgia and have been in constant pain since 2019. You’ve been experiencing a variety of different symptoms and you wonder if this is really fibromyalgia.

    The Versus Arthritis website has a useful page on fibromyalgia that you might like to read. It explains that fibromyalgia is caused by nerve pain and can appear in any part of the body, so it could be that the pain you mention is linked to fibromyalgia, but it’s difficult to diagnose. However, the pain can be dealt with, and I suggest that you ask your GP for a referral to a pain clinic. A variety of medical professionals, including occupational therapists, physical therapists, psychologists and specialist pain consultants will consider the best way to help you. Have a look at the link below for more information:

    Many of our members experience pain in their daily lives and I’m sure they will be able to advise and support you so you don’t have to go through this on your own.

    Best wishes,

    Anna ( Mod)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Jona
    Jona Member Posts: 406

    Hi honey bunny,

    Omg don’t lever feel like that you are definitely not useless your in pain I honestly understand how you feel phone your gp ask for a second opinion maybe with a gp that has a special interest in arthritis/fibromyalgia the receptionist will advise and ask for a double appt so you and he/she have time to discuss properly and tell them how it’s making you feel your not alone with this and the lovely people here will advise and help all they can keep posting and talking

    take care

    love Jona 😊💪

  • compulsive_rambler
    compulsive_rambler Member Posts: 7
    edited 5. May 2021, 21:24

    If there's one thing all the post-covid imaging shows, like the most recent BMJ Open Coverscan study, it's that ME/post-viral fatigue + chest pain + breathlessness screams "get an MRI to check for post-viral myocarditis".

    It has taken my young friend who caught covid when I did (probably from me, in fact) a year to have a doctor finally suspect heart involvement, probably because of the research piling up from around the world proving that myocarditis is incredibly common in post-viral syndrome patients; at least, it is after covid. It's 1 in 3 or 1 in 5 of "post-covid syndrome" patients, depending on how many months after infection they get scanned. It's just rarely *diagnosed* and treated correctly because post-infection cardiac MRIs are rarely offered to non-athletes even if patients have every last symptom.

  • YvonneH
    YvonneH Member Posts: 1,076

    Hi @compulsive_rambler

    I too have fibromyalgia, it came as a side effect of widespread OA and between the 2 life can be difficult. I don't know about you but I haven't found any current treatments that have worked but there is some new research going on, some funded by Versus Arthritis too. I like the sound of this one, it involves doing some brain training to get it to behave properly again. Here's the link

    Take care

    Yvonne x

  • Jona
    Jona Member Posts: 406

    Hi, this is where I get confused re fibromyalgia is it imagined or is it an illness some drs say it’s imagined or define it as we don’t know what’s wrong or is it nerve endings that are or are not responding to pain signals from osteoarthritis?

  • Ellen
    Ellen Moderator Posts: 1,628

    Hi @Jona

    Take a look at this information about Fibromyalgia:

    Hope it helps


  • Jona
    Jona Member Posts: 406

    Hi Ellen,

    Thanks for the link read and re read still a condition that can be misconstrued as still many conditions that are similar in symptoms but thank you

    love Jona

  • Lilymary
    Lilymary Member Posts: 1,740

    Hi @Honeybunny , it can be tough to get some doctors to take ME and all that goes with it seriously. I’ve suffered two bouts of this, and was just coming out of a three year stretch when the OA took over instead. Over a year later, and now going through the rigours of post op recovery, I have no idea what my fitness and energy levels will be like when I’m back on my feet.

    I was lucky that my GP during the second bout was really supportive, (unlike the GP the first time round) and also that I never suffered with fibromyalgia, but I know from other sufferers that these can come together. I was ultimately referred to a consultant immunologist to confirm my diagnosis, but as you know yourself the treatment options for ME are limited. I just paced myself as best I could and nursed myself on bad days, and eventually it passed (about 18 months the first time).

    I hope the link on fibromyalgia is helpful, but if your GP isn’t being supportive, in your position I would ask to see another GP in the practice who has more interest in this condition. It can make such a difference.