Discussion in 'Fibromyalgia Main Forum' started by victoria, Nov 9, 2009.

  1. victoria

    victoria New Member

    This is a question to which I have never seen an answer, or missed it... or forgot it!

    OR perhaps it's a controversial distinction, not sure. I've a feeling there will be a lot of different opinions by doctors and patients alike.

    My family MD and I have disagreed as to whether I have/had CFIDS or Fibro. Because I have all the tender spots (+ more, I believe), he says I have Fibro.

    Because I do NOT have pain other than sinus headaches, and the Chronic Fatigue has cycled and slowly worsened since my year of Mono/meningitis 40 years ago, I say it's CFIDS.

    I realize that I also have lyme and other things.... but as far as giving me these added dx, I don't see how someone can say I have FM if I don't have actual incapacitating pain, not even sometimes, and never have.

    OK, open to all opinions/facts/etc (whatever 'etc' is!)

    all the best,

  2. TigerLilea

    TigerLilea Active Member

    I'm a little confused as to what you mean when you say that you have all the "tender spots" yet you do NOT have pain other than sinus headaches. What do you mean by "tender spots"?
  3. hensue

    hensue New Member

    I would love to have cfs vs fibro symptoms discussed. I know we all vary in symptoms. What symptoms in fibro that are the same in cfs?

    hensue[This Message was Edited on 11/09/2009]
  4. Elisa

    Elisa Member


    A number of years ago when I saw Dr Cheney he said that FM and CFS are similar if not the same - just different expressions, theoretically, of one illness. He also explained that one can have both - that is the case with me. And as a rule, for FM - pain is predominant and with CFS - fatigue is predominant.

    Also years ago at the Cleveland Clinic (Dept of Rhem) they tested me for the number of tender spots and then said I had CFS. I only learned about FM later...

    Oddly, my experience is -- when I had pain (FM) I seem to have relatively good energy - however, when I do not have the pain I do have fatigue, weakness and zero energy (CFS) - so predominance can change for day to day - at least for me.

    God Bless,

    [This Message was Edited on 11/09/2009]
  5. isiselixir

    isiselixir New Member

    I thought if you have lyme technically you don't have cfs or fm you have lyme. Am I missing something?
  6. victoria

    victoria New Member

    re the tender points, there's an illustration here that 'defines' Fibro:

    Also an explanation of it here:

    To add to it, there's a lot of discussion as to what is 'tender' vs painful vs trigger points. Oh yeah, also myofascial syndrome, apparently different.

    I don't think a dx of Lyme is the end-all, be-all, tho of course one needs to be treated for it. There are many who find that treating Lyme and co-infections does the trick - probably because it then allows the immune system to fight off opportunistic and other infections that may not be a problem (or as much of a problem) in a 'normal'.

    One normally gets more than one tick born disease, as my son did; and then abx of course invites in candida; and in the meantime one often has to deal with 1+ herpes viruses, and others, that normally would remain dormant. It seems that for many this is what happens. WQorse of course is that if it goes undx'd for a long time, like my son and myself, is that it can be virtually impossible to put it fully into remission (I don't think you ever get rid of it from the research I've read).

    As I said, my problems started after a year-long bout with EBV and mono-related meningitis (or it could've been cytomegalovirus, there were no tests then to distinguish between it and EBV; I've read since that the only difference is that the swollen tonsils won't hurt with CMV, which was true for me - could be why EBV tests 15 years ago didn't show anything?) Granted, that first illness coincided with a tick bite.... but...--

    I continued to have problems that cycled up & down, up til the past 15 years or so when I started a very slow gradual slide down.

    I think, as do most doctors I've talked to, that one problem weakens the immune system and allows for other infections, major or opportunistic (those normally handled by the immune system) to get better established...

    I wish just one dx and treating that (if possible - chronic lyme is hard to treat in any case, many believe you don't ever really get rid of it anyway, just keep it at bay) would do the trick.

    Life would be much simpler.

    Anyway, my family MD still insists I have FM in addition to Lyme and who knows what else... tho my major symptoms have been chronic fatigue, brain fog, lethargy, post-exertional malaise... and everytime those points or just about anywhere gets pushed on by a doctor's finger, it hurts. Otherwise, it doesn't. That's what confuses me.

    I agree with Dr. Cheney there's a huge overlap and that it's really just variations of the same thing, actually. Other diseases can show up in different ways as well, depending on the person. Just curious as to what others have been told.

    all the best,

    [This Message was Edited on 11/09/2009]
  7. Debra49659

    Debra49659 New Member

    Hi Victoria....I believe one of the qualifiers for having a FM dx is that you have pain in all four quadrants of the body. Lots of people can have sore tender points and not have FM. I'd agree with you at this point, but heck what do I

  8. victoria

    victoria New Member

    I have a friend who has been to all (or almost all) the top name doctors in the field of treating CF/FM, plus many, many of the alternative possible protocols, with no help at all. He now says he has decided he has the "His Name" Disease.

    I am beginning to think he might be right, especially if he doesn't show positive for XMRV. Perhaps I have the "Victoria" Disease, Deb has the "Deb Disease", etc.... we all seem to have a unique makeup of symptoms and actual dx's!


    all the best,

  9. denis321

    denis321 New Member

    but the diagnosis of either is vague because both are based on subjective symptoms.

    Personally, I don't think I have FM because although I have all-over flu-like achiness, it's not severe pain and I don't have tender spots.

    Realize that FM is common in people with other rheumatologic illnesses like Rheumatoid Arthritis. FM probably is related to a chronic inflammatory state and insofar as CFIDS is an inflammatory state, I can see FM occurring in some people with CFIDS.

    The articles I've seen, there are definitely people who have both CFIDS and FM but the percent with both is less than 50%.
  10. mbofov

    mbofov Active Member

    People with CFS (including myself) cannot tolerate exercise. It knocks me down and throws me in bed for several days. Graded exercise is of no benefit. It's been demonstrated many times that exercise can actually be dangerous for someone with CFS.

    I've also read of many people with FM who do better with moderate exercise. They seem to be the ones who benefit from graded exercise. I don't have FM and have no experience - this is just what I have read from varous posters.

    At the Fatigue Lab at the University of the Pacific in Stockton, California, they are performing exercise stress tests on people with CFS twice - first on the initial day, and then the day AFTER the first test. They are finding extraordinary levels of disability in the second day which is not seen in any other illness. It's a completely new finding, and it clearly demonstrates how dangerous exercise is for people with CFS. I believe our mitochondria are malfunctioning or damaged, perhaps by XMRV.

  11. denis321

    denis321 New Member

    I have a friend who has only CFS and her cousin has only FM.

    My friend is homebound and can't do much at all while her cousin has moderate-severe pain all-over but feels better after a moderate exercise session. My friend would end up crashed in bed.
  12. victoria

    victoria New Member

    but I do know people who are able to tolerate exercise at times, and crash at other times. I have had this happen to me.

    Before I joined it, a support group participated in a research study where they recorded graded exercise and time spent things they ordinarily did around the house etc... regardless of their dx's, all of them were found to substitute the time they were able to do household/etc things with walking further around the block, thus shorting the time spent doing what they would've 'normally'.

    IE, regardless of dx of CF or FM, they only had a certain amount of energy, no more and would crash with 'just' fatigue OR fatigue and pain. Not what the researcher expected to find or wanted to, not sure it was ever even published.

  13. mbofov

    mbofov Active Member

    between CFS and FM. Perhaps with CFS finally earning some respect with the discovery of XMRV, some serious money might be spent tring to answer all these questions.

    Read Osler's Web - I wish I'd read it years ago. It tells exactly why CFS research is in the sorry state it is today, and it's also very informative about CFS itself. It's a fantastic book-

  14. hensue

    hensue New Member

    or anything to get your heart rate up. Maybe 12 sometimes 24 who knows when I will hurt all over and very fatigued. My voice is fatigued and other issues sometimes, or maybe not.

    I am diagnosed with fibromyalgia. At the time I was diagnosed I hurt all over. Not knowing how to slow down.

    So what do I have?

  15. astroherb

    astroherb New Member

    I was diagnosed with FM and the rheumy was adamant that I didn't have CFS. However, the overwhelming fatigue, sore throat, weakness, etc. were by far the worst symptoms. I had the pain of FM, but the thing that put me in bed all weekend was the fluish, fatigued feelings. I also have post exertional fatigue. I am sick for two or three days after exercising (anything unusual or too much of anything). So go figure. Is the rheumy right or not?

    Thank goodness, I am somewhat better now but it woul be nice to know what I really have.
  16. AuntTammie

    AuntTammie New Member

    never trust a rheumy! LOL seriously, it seems that they are less likely as a grp (I know there are exceptions) to believe that CFS exists than some other doctors

    to me, it sounds very much like you have a classic case of CFS, but if you really want to know more, you could compare your symptoms to the Canadian definition of ME/CFS (it's online - just google)
  17. renehicks

    renehicks New Member

    hi Victoria according to teh canadian guidelines ( Corruthres) ME.CFS is commonly triggered by a viral infection.
    There is usually grater fatigue, post exertional malaise- and fatigue, and cognitive, cardiac and immune disfunction in ME/CFS.
    pain is the most prominent feature of FMS,which is often trigered by physical trauma.
    Many ME?CFS patiets also meet teh criteria for FMS. The rresearch test for disregulation of an antiviral defence pathway can distinguish ME/CFS from FMS, meeting both criteria tests the same as ME/CFS.

    I assume he is talking about the low molicular rnasle defect.( BUT I KNOW PEOPLE WITH me/cfs WHO DO NOT HAVE THE DEFECT)

    I have ME and FMS my sister has FMS and has been able to continue working althous she is tired and has pain all teh time.

    I colapse after very little Physical effort she does not.

    According to teh WPI they ahve tested a few FMS and they also have the XMRV virus but as they stated missdiagnosis is always an issue so much more needs testing on that one.


  18. victoria

    victoria New Member

    my real confusion and disagreement with my family doc is about the "tender points", what do they mean if I feel them - when he presses them, it's very uncomfortable to outright pain --

    but yet I don't have the pain flares that I see others have. I have no pain other than sinus headaches... (which are getting better now that I'm on a protocol for Lyme, sinusitis can be a symptom of it and is often included in symptoms for CIFDS/FM/ME, not surprisingly).

    all the best,

  19. gapsych

    gapsych New Member

    Victoria, I can see your post and I am logged in. I haven't even posted this on the tech support. So thanks to tech support, yea!!

    I always have had the same question of what do I have? My DD started after a broken arm but I have always been a person who needs lots of sleep but as I have RLS and don't get into deep sleep before this DD.

    If someone presses my tender points, it is very painful. But the fibro pain for me is a deep aching down to the bone which absolutely sucks out any energy.

    I think I have only had one bad flare where I was aware of some of the tender points.

    However, when I am sleeping I have to put a pillow between my knees as when they touch they hurt. Sometimes if I lay on my back and even on my side I can feel the other two tender points. But I guess this is like someone touching your tender points.

    I am sure I have PEM and one day I can do very little exercise and be down for several days and have had days where I have exercised but am fine the next day and vice versa. I can't determine my "envelope" of energy.

    I have a theory, but have not done any double blind studies, LOL, that since both CFS and FM cycle if depends on where you are in the cycle that determines how affected you are. However, I can't always predict the cycles, have even kept charts but have not found a pattern.

    Hopefully the XMVR will help determine which you have or if both conditions are the same but your symptoms depend on where you are on the continuum.

    Okay, now I have a headache. Too much thinking.

    Here's a bump!!

  20. hannahfaid

    hannahfaid New Member

    seem to go hand in hand most that have cfs end up being fm too... I was Dxed with cfs 3 months later Dxed with FM actually first with FM but he never did any tender point testing just blurted it out
    I was dxed with hypothyroidsim low iron walking pneumonia, food sensitivities all kinds of garbage! takes a ;long time to straighten out your system if ever!!
    I think the only difference is that CFS leaves more fatigue.. while FM is way more pain and the 18 points to diagnose even though you can have FM without the 11 points its just screwy gotta find the right dr!! :LOL