Differences between CFS and FM

Discussion in 'Fibromyalgia Main Forum' started by marcus1243, Oct 28, 2002.

  1. marcus1243

    marcus1243 New Member

    Just out of interest, I thought some of you might find the following observations interesting in determining which of these wonderful maladies you actually have (as both are considered related): I have FM (as dx'd by a rheumy), and my girlfriend has CFS (or M.E. as it's known here in the UK). Yeah, I know -- we throw great parties! ;)
    Although we share many similar symptoms (muscle and joint pain, blurry vision, headaches, general malaise, muscle cramping, dizziness), my gf's symptoms seem more flu-like/ viral in character (swollen glands, hot sweats, extreme dizziness, massive fatigue and exhaustion), whereas mine seem more neurological (paresthesiae, numbness, tingling and 'buzzing' sensations in the legs, overactive bladder). We BOTH suffer from muscle cramps and easy muscle fatigue and also fasciculations (my gf's legs go nuts sometimes!). However, the MAJOR difference is fatigue: my gf is SO exhausted all of the time -- even getting up to take a shower fatigues her terribly. I, on the other hand, don't get fatigue much at all -- just pain, muscle weakness, dizziness and weird sensations. I think the fatigue component might be the single most important factor in distinguishing between these entities. And I'm CONVINCED that FM is more neurological in character compared to CFS (hence confusion with MS quite often). Just thought you might find the first-hand observations of interest..
    (And of course, I guess some of us lucky buggers have both!) :(

  2. marcus1243

    marcus1243 New Member

    Just out of interest, I thought some of you might find the following observations interesting in determining which of these wonderful maladies you actually have (as both are considered related): I have FM (as dx'd by a rheumy), and my girlfriend has CFS (or M.E. as it's known here in the UK). Yeah, I know -- we throw great parties! ;)
    Although we share many similar symptoms (muscle and joint pain, blurry vision, headaches, general malaise, muscle cramping, dizziness), my gf's symptoms seem more flu-like/ viral in character (swollen glands, hot sweats, extreme dizziness, massive fatigue and exhaustion), whereas mine seem more neurological (paresthesiae, numbness, tingling and 'buzzing' sensations in the legs, overactive bladder). We BOTH suffer from muscle cramps and easy muscle fatigue and also fasciculations (my gf's legs go nuts sometimes!). However, the MAJOR difference is fatigue: my gf is SO exhausted all of the time -- even getting up to take a shower fatigues her terribly. I, on the other hand, don't get fatigue much at all -- just pain, muscle weakness, dizziness and weird sensations. I think the fatigue component might be the single most important factor in distinguishing between these entities. And I'm CONVINCED that FM is more neurological in character compared to CFS (hence confusion with MS quite often). Just thought you might find the first-hand observations of interest..
    (And of course, I guess some of us lucky buggers have both!) :(

  3. sb439

    sb439 New Member

    and there is sure something to what you say.
    However I myself prefer to be more careful with classifications. Both CFS/CFIDS/ME and FM/FMS are often taken as syndromes, and a syndrome is not the same as a disease (in the sense that what causes the syndrome is (yet) unclear, in our case, and there are likely to be different causes in different people).
    I have CFIDS, and there can be no doubt about this, but my symptoms differ from a friend of mine who also has CFIDS at least as much as yours differ from your girlfriend's. It seems that within the group of people with CFIDS there is a wide variety of sets of symptoms, depending e.g. on what viruses (if any), what parasites, what bacteria, how much adrenal insufficiency, what kind of immune deficiency, whether or not thyroid problems, how much your brain has been affected, etc. etc. is present in the individual, also what stage of the development of CFIDS you're in, what genetic outfit you came with.
    I sometimes think that the only thing that clearly distinguishes FMS from CFIDS are the very particular (and terrible) kinds of pain that are specifically connected with FMS - all the other symptoms seem to be present in at least some people with CFIDS who don't have (or not much) FM pain. But here I may be wrong, and am happy to be corrected.
    Susanne



  4. marcus1243

    marcus1243 New Member

    It's true that many people with M.E. *don't* have fatigue as their primary symptom, and who instead present with myalgias, muscle fatigue, fasciculations, dizziness and digestive disturbances. (Fatigue isn't even considered a diagnostic symptom in the latest UK guidelines). They also might have the tender points that Fibromites have (although my gf doesn't), which further confuses the issue. I have to say though that if anything, my girlfriend has *more* pain than I do -- it certainly seems more relentless than mine, so I'd have to take issue with the pain differential. All I would say is that we have illnesses that are similar and yet at the same time so very different -- makes you wonder how any doctor can arrive at a reliable diagnosis of either..?
  5. marcus1243

    marcus1243 New Member

    Read your post with interest -- perhaps we can look forward to SPECT scans becoming lower cost and a more routine diagnostic test for both syndromes, as reduced blood flow to critical areas of the brain may well be a common component. This, along with endocrine abnormalities, an overactive immune system and CNS sensitization may well also be common factors. (And maybe viral involvement like HHV6 in some cases?) I suppose one day they WILL be able to reliably test for both -- guess we just have to hang in there until the answers become clear!
  6. thereseuk

    thereseuk New Member

    Hi marcus
    It must be awful for both of you to have this illness. I,m probably going to be controversial but I dont accept the diagnosis of either fms or cfs/ME. For me it has been nothing but a hindrance because of the official treatment guidelines here in the UK. I have both the swollen glands and flu like symptoms and the complete and utter exhaustion just walking a few steps a bit like a battery that cant hold its charge then it 'mutated into pain and neuro problems and I go between them both.
    I think jellys opinion on blood flow is very relavant along with the endoctrine abnormalities and CNS sensitisation but what causes what I dont think anyone has the answers yet.
    Have you had any neurological investigations done. A few of us here have had qualitive eegs done which have showed up slow waves in the delta area of the brain. Further eegs I,ve had done has shown up a 'spike' in the mid section of my right temporal lobe. I,m awaitng further eegs one sleep deprived and one 4 day one before a diagnosis is ventured.
    What that diagnosis will be I have no idea but at least its 'concrete' proof that its 'all in my head'
    love therese
  7. pam_d

    pam_d New Member

    ...separated at birth. My FM symptoms are nearly identical, when you talk about "weird neurological sensations" like tingling, buzzing, and the overactive bladder, I almost shudder because it sounds so much like me. Do you get strange skin sensations & weird sensations that seem almost just under the skin? Do you get the swollen feeling hands?

    I've just started in the past year getting the swollen lymph nodes & low grade fever & my rheumy now thinks CFS, too--but I don't have really extreme fatigue...

    I agree with you about FM being more neurological, in my personal experience at least, mine started out only this way, then later I had pain...

    I wish for better health to both you & your girlfriend, you're lucky to have found each other, each will always understand what the other is going through.

    Pam
  8. marcus1243

    marcus1243 New Member

    of my Neuro's office, and all I got from him was derision. I was frightened I had MS (still am actually, despite practically *living* in hot baths!) and all I got was "you definitely don't -- and there's no such thing as M.E. either -- go and do some exercise and see a psychiatrist." (At that point it occurred to me to give him a sample of pain so he could relate to me better! ;) Basically, yes -- I've had neuro investigations: MRI (Brain), MRI Angiogram, 7 (count em!) neuro exams, CAT scan -- no EMG, VEP LP yet because there's no hard evidence of neurologic deficit on examination. I *do* get tremors, shakes, dizziness, and blurry vision, and weakness but they're so on-off that they can't readily be observed. Anyway, the bottom line is that no neuro now thinks that I'm worthwhile investigating (except possibly for peripheral neuropathy), and I just can't believe you managed to get EEG's done with a possible dx of FM/ME -- it just isn't taken seriously enough in the UK! How did you manage it?

    Reeder, your daughter sounds *exactly* like my girlfriend (who is 26). Even down to the 'sunburned skin' feeling. I know how awful it is and I hope she gets better soon -- at that age, I think the statistical prospects for recovery/remission are quite high, so I'm hopeful for her. At least she has caring, understanding people around her, which is great.

    Pam, thanks for your good wishes -- yes, we do help each other through the flares. *Nobody* but someone with CFS/FM can understand the misery of this condition. And yes, I do (or have had) the weird skin sensations (including a feeling of 'tightness' under the skin), but like many others, that feeling comes and goes intermittently. Weird huh?
    Marcus[This Message was Edited on 10/29/2002]
  9. sb439

    sb439 New Member

    Marcus, I didn't want to belittle CFIDS pain (it was one of my main symtoms for quite some time), just that there is a *specific* fibromyalgic pain which some CFIDS people don't have (in fact I used to have moderate FM pain for over a year, which came when I lost the ability to sleep and went to a large degree when I found something to get my deep sleep back (Clonazepam + sedative antihistamine).)

    Your experience with the Neuro sounds sooooo infuriating. I had several similar experiences when I lived in the UK, and always regretted that I was to shy/flabbergasted to react to them on the spot, rather cried and was upset for days afterwards. (I still feel like revenge ...)

    love,
    Susanne
  10. klutzo

    klutzo New Member

    Those of you who are familiar with my posts know I am kind of an egg-head and always full of info from my constant research. Well, instead of adding my opinion, after 17 yrs. of research, to this interesting debate, since it will still be just an opinion, how about something totally different? You can take it or leave it as you see fit.....
    About six yrs. ago, in a desperate attempt to help me, my hubby bought me a half-hour session with a nationally known psychic who helps police depts. find missing kids and killers, etc. The only thing the psychic knew about me beforehand was my first name.
    As the session began, he asked what areas I wanted to concentrate on and I said my health. He then immediately asked me if I had ever heard of Chronic Fatgiue Syndrome or Fibromyalgia. I said yes I have heard of them. He said, well you have both of them. (I have only been dx'd with FMS). I asked if they were not the same thing, and he said they are not the same but susceptibility to one creates susceptibility to the other, since they are both caused by viruses. He also said there will be no cure in my lifetime (I am 51), and that the viruses that are going to come along will make CFS/FMS look like a day at the beach. I asked why all these horrid viruses are showing up and he said it's because of our cutting down the ancient rain forests! They are full of viruses, bacterias, etc. that modern men have never been exposed to and have no resistance to, which are set adrift into the world's air currents as the trees are all cut down.
    It may sound nutty, but how did he know what I had??? I try to keep an open mind.
    Klutzo
  11. Milo83

    Milo83 New Member

    Could someone please tell me what ISAC Syndrome is?
    Thanks..........Take Care..........Donna
  12. Annette2

    Annette2 New Member

    I have FMS - I was diagnosed about 5 years ago. My chief complaint in the beginning was pain. I've had depression, anxiety and IBS since I was about 14 (I am celebrating my 52nd birthday today)! About 2 years ago the FATIGUE set in. I will have it for a few days, and then boom - it will go away, only to reappear again a few weeks later. My family doctor said I must have CFS as well as the FMS. But I always think of FMS as my "main problem". I don't know about viruses - I've never asked my doctors about them. I don't get swollen glands but I do get the overwhelming fatigue. As time goes on it seems to get worse and worse. I am sorry you're having such a problem with the British health care system. Since I don't know anything about it I can't offer suggestions, but I do hope you find a physician who will respect you and take you seriously!

    Annette2
  13. thereseuk

    thereseuk New Member

    The only real help I,ve had in the quest for a proper diagnosis has been my psychiatrist. But even then it took over a year to be taken seriously. I initially had severe PMS whch necessitated a full hysterectomy and the gyni dept is linked with psychiatry. I was put on seroxat[paxil] and developed a severe reaction basically it closed down my mind and fireworks went off in my head and caused violent suicidality. {it was on panorama last week].
    So I ended up with the typical psychiatrist who just kept saying I was depressed which I vehemently denied. I was terhn over a coarse of a year given antidepressant after antidepressant all of which I had severe reactions too. Til eventually I insisted on a second opinion from another psychitrist who eventually took me seriously and ordered first an mri then the eegs. The mri was fine but as I have said the eegs in my psychiatrist words 'vindicated' me.
    I have a problem in the mid anterior right temporal lobe which plays havoc with my moods yet I dont fit any mental health pattern exactly.
    I,ve yet to have a proper Neuro consult basically my psych liaises with that department. Having said that I rang the neuros secretary last week to insist on a personal consultation given that I have now had 3 abnormal eegs over the last year.
    Did you ask for a second opinion it is your right under the nhs. Sometimes you just have to be balshy and insistent.
    love therese
  14. marcus1243

    marcus1243 New Member

    I've already had a second opinion, (and he was more arrogant and rude than the first). Guess I need a third..?
    Sometimes, you just need to keep pushing for an answer..
  15. thereseuk

    thereseuk New Member

    Yes you do have to keep pushing even though thats exhausting in itself. Theres also the local community health councils which might help along with various patient rights group where an advocate can be appointed on your behalf. If I dont get a response from my second call to Neuro I,m going to go through a rights group to ask for a full review of my treatment up to date. Maybe that will light a rocket under them.
    If you havent had any eegs done then you could argue that they havent got a the full pictue and therefore cant make an informed diagnosis. Its definately worth pushing for because you could end up with concrete evidence that cant be dismissed.
    good luck
    love therese
  16. Wuame

    Wuame New Member

    My official dx in 1999 was FM, but years before that I was told I "could" have ME.

    From what I've read--not just here but in general, & from my experiences, I have to conclude that either FM/ME are at the roots at least the same thing, or that I have both of them--or both!

    Oh joy!

    Wuame