Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
Discuss the article on the Forums.

Fibromyalgia or ME/CFS?

Discussion in 'Fibromyalgia' started by Legendrew, Mar 20, 2014.

  1. Kestrel01

    Kestrel01 Not giving up, I will fly again!!!

    Messages:
    2
    Likes:
    0
    Bath and North East Somerset. UK
    Hi
    I have CFS/ME but it's changed recently, less fatigue and doing more but more pain and aches. Colleagues where I volunteer have said it sounds like Fibromyalgia as they know people who have it. They were quite shocked when I turned up on crutches the other day.

    I have pain at some of these points and more that are not, but no more when pressed, but my husband says I'm weird anyway as he does martial arts and had tried pressure points and holds that would leave most people in agony, I don't even react. (We keep forgetting that and almost broken my wrists.) Most of the time when I'm well enough to do it that is.

    So do I have CFS/ME Fibro?
    Plus it's getting harder and harder to walk safely. (When is the best time to think about a wheelchair when out and about?)

    Thanks CD
     
    Last edited: Sep 17, 2014
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,824
    If you're avoiding your usual outings due to it being too difficult and/or painful, or you're wiped out after the necessary amount of walking involved, then I think I wheelchair is a great option.

    With regards to mobility aids, the only regret I've ever had is that I didn't get them sooner!
     
    Paintmyturquoise likes this.
  3. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    Not sure
    But I can tell you my experiences..

    In my specific case Fibro is just another one of my many symptoms,like ADD,CPS and POTS..

    As far as your wheelchair question goes,only you can answer that..

    And absolutely do not base your decision on what others may think of you..
     
  4. Kestrel01

    Kestrel01 Not giving up, I will fly again!!!

    Messages:
    2
    Likes:
    0
    Bath and North East Somerset. UK

    Thanks for the help.
     
  5. wonderoushope

    wonderoushope Senior Member

    Messages:
    150
    Likes:
    177
    Hmmm I am now wondering if I have Fibromyalgia. I thought it was CFS, but wondering if it's FB. You can pretty much press anywhere on my body and it is tender. I've pretty much been like this for a long time, but didn't think anything of it. I thought most people were tender when touched. I don't usually feel the tenderness unless someone touches the spot though. So my whole body isn't aching the whole day usually. When I do have an ache flare-up only a particular part of the body will be in pain, like back, knees, feet, shoulders, neck etc.

    I really noticed these tender points throughout my body since going to an acupuncturist and physio (recently) they were trying to find spots in my body, and the pressed all these points and it was rather tender in most spots, spots I never realised were so tender and painful. I've always known my lower back and neck have been tender to touch, but if I don't actually touch them I don't feel tenderness/aching.

    Also I have always had bouts of lower back pain, upper neck, shoulder pain and pain in my feet. Sometimes it last for a month or two and then disappears and then reappeaers. The pain seems to jump from one day to the next, especially if I have done stretching exercises and seen a physio or osteopath. Like I will go to the physio for my knee and he works on that, then my pain jumps to my lower back, he works on that, then it jumps to my upper back. I asked him if that'st the norm and he said "yes, he's quite a few patients were pain moves as my body is trying to comensate". Now I am having issue with my calves (mainly my right calf), it's been playing up for the last few months. Again some days weeks are better and then it just flares up again. I am also very stiff in my body when I have muscle issues. Like when I get out of bed I am stiff and takes me a bit to straighten up. When my feet a flaring up, it's hard to walk first thing out of bed (at the time osteo thought it was plantar fasciitis) but then it mysteriously disappears after a while (which I don't think plantar fasciitis would do) and then it might come back at a later date.

    I'm also having flare-ups at night with costochondritis (had this all my life) and I also have joint pain near my ear and jaw (again not really noticeable unless I am chewing something hard or I touch those points).

    I had always dealt with atypical migraines and headaches my whole life. About three and a half years ago it was at it worse, nearly every day for 2 months (close to when I had my worst bout of CF symptoms). But I haven't had a migraine in about 3 years and my headaches have reduced significantly. I think it has to do with my diet and reduced stress. I have diet is the biggest thing. But when my neck and back is out I will tend to get a headache. Whenever I go to an osteo I always leave with a headache (just with massage, I tend to not ask them to do manipulations) as I think they aggravate those tender spots in my body (just by massaging points within my body).

    The only thing that made me think I might have CFS is that I did have clear PEM about 6 months ago (for the first time but had lots of other CFS type issues before that). I also have terrible food sensitivity flare-ups and other things that also match-up to CFS.
     
    Last edited: Dec 2, 2016
    Paintmyturquoise likes this.
  6. Paintmyturquoise

    Paintmyturquoise

    Messages:
    32
    Likes:
    39
    The ear jaw pain is likely TMJ
     
  7. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,197
    Basic information from the MEA on FIBROMYALGIA (FM) and ME/CFS (as it is a very common query)

    My personal view is that there is a considerable degree of clinical overlap between ME/CFS and FM - but they are different conditions.

    So some UK specialists who see patients with ME/CFS-like symptoms (ie muscle pain, fatigue, cognitive dysfunction etc) will make a diagnosis of ME/CFS whereas others (rheumatologists in particular) may make a diagnosis of fibromyalgia in the same person.

    And some people have what I think is best described as a fibromyalgic component to their ME/CFS, whereas in other cases a diagnosis of pure FM would be more appropriate.

    One important difference is that you have to have pain (often symmetrical/the same on both sides of the body that is in localised areas or 'tender points') to have FM whereas musculoskeletal pain (localized or widespread) is not always present in ME/CFS.

    The situation is clearly unsatisfactory and can be very confusing for patients.

    I cover the similarities and differences between ME/CFS and FM in some detail on pages 106 - 108 of Living with ME (Vermilion paperback available free from any public library)

    If anyone in the UK wants to pursue the possible FM component they could ask their GP for a referral to a specialist referral service for ME/CFS, or to a rheumatologist.

    Contact details for all the UK ME/CFS services can be found on the MEA website: www.meassociation.org.uk

    If someone requires more help with pain (regardless of diagnosis), and if a GP cannot help, another option would be to ask to be referred to a hospital pain clinic

    We have an MEA information leaflet covering the general management of pain in ME/CFS and leaflets covering specific drugs - amitripyline, duloxetine, gabapentin, pregabalin - that may be prescribed for pain relief in ME/CFS.

    MEA literature list:

    http://www.meassociation.org.uk/shop/

    Recent paper on the use of acupuncture, which may be worth a try, in fibromyalgia:

    http://aim.bmj.com/content/early/2016/01/27/acupmed-2015-010950.abstract

    FM tender point map:

    [​IMG]


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    Sasha and Paintmyturquoise like this.
  8. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    I have ME/CFS and never even considered that I might have any kind of overlap with FM (I'm not in pain, apart from muscle pain sometimes) until I was referred to a rheumatologist and he decided to test me for FM by ramming his thumbs into a series of particular spots and some of them - massive surprise to me - were very tender. Not enough for an FM diagnosis but I wonder whether these only seem to be different conditions because we're not all getting tested.
     
  9. daisybell

    daisybell Senior Member

    Messages:
    1,601
    Likes:
    7,362
    New Zealand
    I've had one rheumatologist suggest I had FM too... but I would defy most people not to wince when the thumb jab is applied! I certainly don't feel I have particular tender points, but can be very tender over all my body if I'm in a crash...
     
    dangermouse, Sasha and Valentijn like this.
  10. Shakota

    Shakota

    Messages:
    22
    Likes:
    49
    I can't supply a reference at the moment, but there is no longer a tender point criterion for diagnosis of fibro. It's more a list of symptoms from several categories.
     
    wonderoushope, barbc56 and Sasha like this.
  11. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    What was interesting is that some points didn't hurt at all and some really did - so there was more to it than just the amount of force being applied, I think.
     
    daisybell likes this.
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,775
    Sth Australia
    At a talk by a ME specialist .. he said that about 25% of people who start off with only FM end up developing ME/CFS.

    I guess a high percentage of us have FM as a symptom of our ME (50%??). When I had a remission of ME, my FM went too .. but fortunately didnt really come back when I got ME again. It would be interesting to know what causes the FM symptom.

    I dont know how specialists could confuse these illnesses as they are distinct so it should be clear if someone has just one of these or both. My grandmother only gets FM and not the ME/CFS, she doesnt get post exertional problems and exercise used to help her a bit.. she's able to push herself without causing harm hence found it harder to understand why I cant push myself. She gets a lot of the coexisting issues which commonly appear in FM eg migraines, painful and overactive bladder, IBS, insomnia.
     
    Paintmyturquoise likes this.
  13. Paintmyturquoise

    Paintmyturquoise

    Messages:
    32
    Likes:
    39
    I'd love details of this specialist to take to my rheumatologist. This is what happened with me
     
  14. Lissyleigh

    Lissyleigh

    Messages:
    86
    Likes:
    171
    A relative of mine has a diagnosis of both m.e and fibro but I've always felt her issues are more fibro. Obviously I'm no doctor, but she can't relate to the PEM cardiac or immunological issues. She mainly seems to experience exhaustion and muscle pain, but she has been to physiotherapy (gulp) and this has helped her improve. She can walk a lot on better days and doesn't really take any time to get over it. This is very different from my experience of m.e where any slight exertion, even typing on here, sets off muscle fatigue and can make me feel horribly unwell if I push it.

    It;s a difficult one as there's a lot of overlap and some people may have mild m.e and be able to do more. But I'm inclined to think as someone said above- fibro is a symptom of m.e, so like pots it could either be a secondary issue in some cases, or experienced by itself.
     
    barbc56 likes this.
  15. Techs

    Techs

    Messages:
    22
    Likes:
    30
    Seems to me some of us also have CFS as a symptom of FM -- but that assumes a chronic fatigue syndrome that is possibly distinct from ME.

    Also, I believe the tender-points test is no longer a necessary component of an FM diagnosis, as it can be expressed in other ways (including "burning" and other flu-like symptoms that align with CFS) -- especially in men.
     

See more popular forum discussions.

Share This Page