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CFIDS without Fibromyalgia/pain ?

Discussion in 'Pain and Inflammation' started by highwaykind, Sep 15, 2010.

  1. highwaykind

    highwaykind

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    I've been reading a lot online lately (mainly about XMRV), but in almost all articles about CFIDS, pain seems to be a pretty big factor.

    I'm your typical post-viral case (10 years, housebound, if I bike/walk for over 15 minutes I crash for days after) and as far as I know pain is just one of the possible criteria someone can match, but it's not a requirement.

    On patientslikeme.com everyone of the "300 something patients like me" seems to have CFIDS as well as fibro, so, er.. that's not like me! Surely I can't be the only one with only CFIDS? (my only pain problem is the occasional migraine-from-hell in the back center of my head, most likely to occur when I do more than I should)

    Also: I couldn't really find anything on this on pubmed etc, but what could be the difference between having only CFIDS and having both??
  2. soxfan

    soxfan Senior Member

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    I don't have pain either...never really have since day one. I did have a virus though and was never well after that. Although I am able to exercise and not crash afterwards. I will say that I have had off and on burning-shooting pain in my left calf/foot only but that is only very occasional.
    I am still trying to get a diagnosis on what is exactly going on with me (since 2004). I am not housebound but can only now work very part time. Fatigue/exhaustion is a daily constant and I have very unrefreshing sleep. I do crash after working but it is immediate...not sure what else to say but that pain is not a factor in whatever is going on with me. I have been diagnosed at various times with CFIDS, Lyme Disease, Post viral syndrome and RLS but for the last one I had a sleep study and showed I didn't have that...sorry I am not of much help here.
  3. Hope123

    Hope123 Senior Member

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    I have ME/CFS without fibro. It's not uncommon. The studies vary a lot but about 15-70% of people with ME/CFS might have fibro -- I've not seen studies where it's 100%.

    Part of it is that neither illness is well-defined or has lab tests to confirm them with 100% accuracy. Also, I have achiness, mostly back and neck, joint aches, and headaches but they're mild and feel like what you get with the flu. It's not outright pain where you have to take a Tylenol or worse. I know this is not FM as it doesn't fit the definition of FM (I have a healthcare background) but I can see where someone with ME/CFS might have the same symptoms as me and conclude they have FM. [I can also see the reverse situation with someone really has ME/CFS but is diagnosed as FM instead.]

    Also, keep in mind that chronic inflammation in itself likely is linked with FM so while some people have *just* FM (primary FM) there are many others with rheumtologic disorders like rhematoid arthritis that have FM also (secondary FM).
  4. ukxmrv

    ukxmrv Senior Member

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    I am XMRV+ and the pain I had in the early years was a fluey type with sore throat, glands etc. Also muscle pain after exertion. Pain as a daily feature didn't occur for me until year 20 or so. Then it was after a particular event and may not have occurred unless.
  5. Mithriel

    Mithriel Senior Member

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    The consultant who diagnosed me had seen patients from the Royal Free epidemic. He said they touched the roof when you touched them. The pain was why they called it myalgic for muscle pain.

    I have always had severe pain. Fibro was seen as a different disease from ME. I had never heard of it until after CFS was invented when suddenly there were all these people getting diagnosed with both. The early papers I saw said that gentle exercise helped the fibro pain but that made people with ME worse.

    I thought then that the problem was CFS did not have pain as a big part of its criteria so when doctors saw a patient with pain to the level I had it, say, they gave this double diagnosis.

    There was a shocking ignorance of ME among US doctors.

    It is possible, though unusual, to have ME without so much pain. If HMRV is behind it and we all have different bugs activated by that then there could be different presentations.

    Mithriel
  6. LaurelW

    LaurelW Senior Member

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    My mom never had muscle pain, but she did have bad headaches. I never got headaches, but I have pretty bad muscle pain. We both have firm CFS diagnoses, and not fibro.
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    You can have CFS without the pain (fibro.) I don't have pain. I have CFS and not POTS.
  8. Hope123

    Hope123 Senior Member

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    Absolutely. I know some people with ME/CFS who have nerve pain, like "lightnening bolts", and who have pain on very light touch of their skin (hyperalgesia). This is characteristic of peripeheral nerve damage, which is different from muscle pain. Some have quite high herpes titers and found that they had decrease or resolution of their pain with antivirals but their other CFS symptoms including muscle pain might not have changed much. There was also an article out that I didn't read but it had to do with how the pain of FM differs from the pain of CFS.
  9. jayhill

    jayhill Beachbum.

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    I've had aches and pains from day one of being diagnosed.. Most i have gotten used to over the last 4 years and are ok to deal with, but the bottom of my back, hips, legs and knees hurt so much when i walk/stand (sitting is ok, they still ache, but it's just in the background).

    I have read about FM, but don't think that is it... I'm going to see my Dr next week, so will be quizzing him on some things. Would be great to have some ideas though from you guys?

    --edited to add, the aches and pains are both joints and muscles.--
  10. Becky

    Becky

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    I was diagnosed and treated for FM. There are 13 points, called trigger points, that are associated with FM. Touching these would be like sending a bullet into my body. I no longer have that pain. However, I still have the CFS symptoms and sleep disorder.

    So you would know the pain of FM if you had it. Your aches and their location are very common to people with CFS
  11. jayhill

    jayhill Beachbum.

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    Pembrokeshire, Wales.
    Thanks Becky, I didn't think it was FM.

    Will definitely have to look into a wheelchair i think, sitting down is fine.. but the minute i get up to walk, or stand still for any length of time the pain is so bad. Up until now it hasn't been a problem, as i haven't felt well enough to actually go out an awful lot. Now i actually feel pretty good and wanting to do more i noticed how bad they are.

    Thanks again, Jay.
  12. JAXintheCity

    JAXintheCity

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    Hey Highwaykind!

    I'm also diagnosed CFIDS without Fibromyalgia... It certainly does happen! Ocassionally, I get "skin pain" after eating processed flours... (which only developed after CFS)...and joint pain without swelling, but aside from that, I have never developed the trigger points and pain often discussed with Fibro. I'm also a viral case -- with reactivated titers of EBV, HHV6A, MP and Candida -- and my main symptoms when I first got ill (and when I am flaring) are also sore throat, night sweats, weight loss, and swollen lymphs, which I think another poster mentioned! Actually, after ten years...I still battle night sweats every night!

    Sometimes I think they just lump together CFS and Fibro on websites -- which is actually a huge disservice to BOTH diseases, because in my opinion, they ARE different -- even if they can co-exist or be caused by the same 'virus.'

    I have a friend, also, who just has FM -- so that happens, too!
  13. taniaaust1

    taniaaust1 Senior Member

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    Ive read (from a small study I think it was, I think it was from one of the ME experts) .. that they found that 75% of ones with CFS/ME had FM. So that would leave 25% of ME/CFS people with no FM.

    If one then includes other kind of ME/CFS pain (headaches, after excertional muscle pain, bowel IBS pain etc etc) .. that would then take the percent without any pain down WAY further.. so only a small group which is in the far minority. If i had to guess at the amount with no pain... I'd guess it would be about 5% with have ME/CFS, i hardly come across anyone with no pain of some kind with this.

    The Canadian Consensus CFS document states "There is a small number of patients who have no pain or sleep dysunction but no other diagnosis fit except ME/CFS. A diagnoses of ME/CFS can be entertained when this group has an infectious illness onset"

    That certainly sounds like post excertional pain to me... I think from that you can say you do have CFS/ME with pain and just arent in the group who has FM with this all.
  14. justy

    justy Senior Member

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    I also have M.E but with little pain. Alot of the time i have no pain, but recently i have been thinking about this and realise that i do have pain, but i dont take meds for it. I have horrendous eye pain and face pain, neck and shoulder pain, a pain on the bridge of my nose that feels like i have been punched. Also horrible fluey, achey pain. All of these pains are relieved by different types of resting. I get a lot of headaches with sicky feeling and spots now too, which i first had as a child (migraine?) The worst pain is the eye pain. Which when it gets bad i cant read or look at the computer or type, and just to move my eyes is agony. It also feels like my eyes hurt more when i am trying to close the lids and sleep 0its really awful.

    Its weirtd because i would describe myself as someone with M.E with no pain, but when i thinbk about it, maybe it is just not all encompassing like it is for some.
  15. Sing

    Sing Senior Member

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    The Fibromyalgia "expert", Dr. Devin Starlanyl, distinguishes two kinds of pain. One is the oversensitivity to touch that the trigger point test identifies. This is considered diagnostic for fibro. The second is common in people with fibro but not in every case, and it is also common in CFS--This is called Myofascial Pain Syndrome. In this kind of pain there is aching from muscles and fascia which are always tightening. The treatment for it is largely stretching and massage which helps release the very contracted areas. What all this contraction does is to compress blood vessels and nerves. It limits blood supply into many areas. And it pulls on joints, displacing them enough to cause wear and osteoarthritis. I am writing this about MPS out of both my own experience and my memory of what she said.

    Typically people generalize and confuse the fibro pain--extreme oversensitivity which is neurologically based--with MPS. However, a person can have one or both. One way to clearly tell the difference is in the kind of massage you can tolerate and benefit from. Is it very light or is it very strong and deep? If the latter, the problem is MPS. If the former, fibro pain.

    What I have is ME-CFS and MPS--not the fibro kind of oversensitivity.
  16. taniaaust1

    taniaaust1 Senior Member

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    highwaykind...

    I just had another look at your post ... and wondered if you could have POTS rather then CFS/ME as i didnt see many symptoms in your post. POTS can happen after a virus (which damages the autonomic nervous system)... and POTS can cause one to crash energy wise or get other symptoms, while or after doing things (due to getting warm or just being upright). an attack of POTS (ive read) may take days to recover from.

    Id be interested to hear about what symptoms exactly you are getting. Have you considered that maybe your issue could be something like POTS alone??? any chance it could be POTS? With POTS.. one can get a bad headache (of cause those with CFS/ME can get bad headaches too) Do you still get viral like symptoms at times due to whatever illness you do have (that helps to distinguish CFS/ME from POTS)
  17. JAXintheCity

    JAXintheCity

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    Hi! Thanks for the post! I always assumed I had POTS...like some people assume they have FM, without a formal diagnosis. But, from my understanding POTs was very common in CFS?

    When I first got sick, my symtoms were primarily:

    sleeping 20-something hours a day
    sore throat
    extreme weight loss (I was so skinny, but too sick to enjoy it! LOL)
    night sweats
    swollen lymph nodes
    cognitive problems

    In recent years, the day-to-day looks like:

    extreme fatigue (post exertional included, whether studying or moving)
    muscle/joint pain -- but not FM trigger point pain
    night sweats
    visual processing issues
    expressive aphasia (using the wrong words)
    twitching
    tremors...loads and loads
    swollen lymphs

    When I am about to flare (which usually lasts about six months) I get:

    All of the above +
    Weight Loss (first sign)
    Sore Throat, Loss of Taste
    And just a general worsening of night sweats, twitches, tremors, etc.

    I was diagnosed in 2000 - by several physicians with ME/CFS - and eventually went to a specialist. I have also tested positive for EBV (over 300%), HHV6A (over 1200%), MP (over 300%) and Candida. I would LOVE to find out I have something OTHER than ME/CFS...god willing something that could easily be treated...but I just feel like such a classes ME/CFS case, I think I would just be disappointed again. :(
  18. thatboyaintright

    thatboyaintright

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    What sort of doctor dx you with candida?
  19. JAXintheCity

    JAXintheCity

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    Enlander - NYC - he specializes in CFS/FM. He had some special test that did it. He was surprised I had it... but he actually diagnosed it before the blood test confirmed it, because I have tongue thrush.
  20. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    WIth POTS, you feel terribly lightheaded, sometimes faint, can't walk or walk far. Usually it starts where you can't lift your head from the pillow. Very bad high heart rate, flushing hot and cold, you have air hunger a lot, blood pressure goes up and down. Many people have very low blood pressure. POTS is very bad, I hate it. Thankfully my supplements have helped a lot and I am improving. Most docs are clueless about POTS.

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