Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Could this really be CFS?

Discussion in 'General Symptoms' started by pjs_1972, Jan 10, 2012.

  1. pjs_1972


    Dear all,

    Thanks in advance for reading and commenting. About six months ago I started to have a whole range of symptoms after a particularly bad virus infection (flu). Before that I was very healthy (actually ran a half marathon the week before!), never smoked, never drinked to excess. The symptoms were all very 'neurological' in nature. (Burning feet, feeling of weakness in my arms and legs, erectile dysfunction etc. all coupled with a general feeling of malaise).

    My doctor was stumped and sent me to a neurologist. He did a very thorough battery of tests which included:
    1) Blood tests ruling out diabetes, thyroid trouble, myasthenia gravis etc.
    2) A nerve conductivity test
    3) A visually evoked potential test
    4) An MRI of both my brain and c-spine
    5) Two thorough neurological exams

    The result was completely inconclusive. To quote from the report that I was given: " Visual acuity wat 6/6 bilaterally with normal fundus examination. Motor examination was unremarkable with well preserved and symmetrical reflexes bilaterally and downgoing plantars. Sensory examination was also unremarkable. Romberg's was negative. Multiple investigations including MRI Scan of the brain and C Spine, nerve conduction tests and visual evoked responses were normal. A multitude of blood tests have come back normal including the inflammatory markers. We have not discovered any structural basis for his multiple symptoms."

    At the end of the consultation the neurologist called in his more experienced colleague and they made a little joke about 'God only knows disease'. The older neurologist then had a bit of a think and latched on the fact that onset was related to a viral episode. In the end they wrote 'Post Viral Fatigue Syndrome' on the report and recommended no further action. Over the past few months I have been trying to educate myself about PVFS/CFS and attempted to follow some basic treatment steps. My problem is, however, that I not at all comfortable with the diagnosis. I had a look at some of the diagnostic criteria for PVFS/CFS and things just don't add up.
    * I am not overly fatigued
    * Certainly do not experience debilitating episodes of fatigue
    * Do not experience post-exertional fatigue
    * Experience no cognitive deficits (As far as I can tell!) :)

    I do not, in short, meet some of the most fundamental criteria for a PVFS/CFS diagnosis. I cannot help but suspect that this is yet another case where CFS was used as a kind of 'wastepaper basket' diagnosis for a hard case. I would love to hear your take on this. Is it possible to have CFS without the fatigue that it is such a defining part of it? I certainly have something 'post viral' (or even just viral, not sure how 'post' I am) but really wonder whether I should simply let go and deal with my 'a-typical CFS' or if I should chase a more definitive diagnosis.

    For the record my main symptoms at the moment are:
    1) Burning Feet
    2) Tired/Numb feeling in legs
    3) Numbness/stiffness in both hands
    4) 'Migratory' pain in the arms, more prevalent in the upper arms
    5) General feeling of weakness in my arms
    6) General feeling of malaise
    I also have some facial symptoms (any thoughts about the relationship of this with PN would be appreciated).
    7) Tight painful, jaw
    8) Eyelid spasms
    9) Numb lips

    Any thoughts/ideas would be highly appreciated. Particularly if you could suggest some avenues of enquiry and/or which type of physician I should seek out next, especially since the neurology route did not prove to be too productive.

    Kind regards and thanks again for your help!

  2. richvank

    richvank Senior Member

    Hi, Phil.

    Might be a viral encephalitis. If you could get a spinal tap (lumbar puncture) in which the spinal fluid could be analyzed for viruses by PCR (polymerase chain reaction), that might tell you what's going on. Maybe an infectious disease specialist could help you with this.

    Best regards,

  3. svetoslav80

    svetoslav80 Senior Member

    I have both permanent fatigue and cognitive issues but since I never get PEM, I don't fit the CFS criteria. And you say you don't even have fatigue, so you probably have some other condition. Don't want to make you paranoid but you can think about lyme with all the neurological symptoms, but you'd better consult with a doctor about that one.
  4. *GG*

    *GG* senior member

    Concord, NH
    Ooh, that sound fun! LOL

    The thyroid makes me wonder what tests/parameters the Drs are using. I think my tests are "fine" but my Dr prescribes me meds. FYI

  5. Ocean

    Ocean Senior Member

    The illness can change and progress and is also different to some extent in each person. If it were me I'd get a second opinion because you very well might have something else going on but I also wouldn't rule out the possibility of it being CFS either.
  6. Esther12

    Esther12 Senior Member

    'God only knows disease' sounds about right... for CFS as well.

    Viral infections can trigger all sorts of problems.

    For a lot of them, it seems that the best thing to do is take some time to relax and do what your body feels like. If, when you relax, you feel like resting, rest. If, when you relax, your body feels like going for a walk, do that.

    Most people's lives make it difficult to do that, and there's a lot of quackery around PVFS, which can make things even harder (I spent the first couple of years being told my problems were a result of deconditiong and that I needed to push myself to get better - which now seems rather poor advice). If problems have been caused by this virus, then taking some time to allow your body to adapt to any changes seems sensible, but we don't really understand the mechanisms involved, why some recover and some do not, why some improve but do not recover while others fail to improve... I'm only giving advice in combination with an clear admission of my own deep ignorance.

    Good luck with everything though. Have you been improving at all? I've come across quite a few people who took a long time (18-24 months) to get gradually better from a severe viral infection, and ended up virtually recovered. Hopefully that will be the case with you.
  7. mellster

    mellster Marco

    San Francisco

    It could be post-viral fatigue which is also sort of a misnomer because it is not limited to fatigue at all, lots of neurological symptoms can happen. I have symptoms 7) and 8) that you listed and while my energy has gotten much much better over the past 8 months the facial symptoms are mostly prominent now - I guess you might have already checked for swollen glands or lymph nodes and inflamed tonsils, if not, another good test to do (neck ultrasound or MRI). Take it easy on the running, please. This could take some time. cheers
  8. Timaca

    Timaca Senior Member

    I would, first of all, take it easy and do not exercise too hard so that the symptoms you do have will hopefully go away. You likely do have some kind of post viral something or other, and it hopefully will get better with time and rest.

    I too had a lot of neurological problems at the start of my illness (very healthy prior to a steroid shot to my knee--- I was very athletic too). Then I fell apart...neurological symptoms first, such that I saw several neurologists and they had no idea. However, I then got the fatigue, brain issues etc. I can no longer exercise . You don't want to be where I have gone. So, take it easy, rest and hope it goes away.

    If it doesn't go away with a bit more time and rest then you could possibly see if a chronic viral illness is causing your issues. See:

    Best, Timaca
    Ocean likes this.
  9. rlc

    rlc Senior Member

    Hi pjs_1972, your right not to be comfortable with the diagnosis, as far as ME goes it is a neurological illness and people with it fail neurological tests, like Romberg etc, and youve been lucky enough to have had a good neurological workup and it has come back negative, so Id say you dont have that. CFS isnt a disease its a collection of symptoms that can be caused by a large number of conditions and doctors like Byron Hyde, who properly investigate CFS patients always find that they have some other missed condition, but the thing is you dont qualify for a CFS diagnosis either if you dont suffer from the principle symptom debilitating fatigue.

    Its possible that you may have some kind of PVFS, have you been checked for CMV, EBV etc, Lyme should certainly have been ruled out. The problem is that a viral onset doesnt necessarily mean that the problems you have now has anything to do with the initial virus, it could just have been the straw that broke the camels back, and it has set of some other underlying condition.

    My advice would be not to accept the diagnosis and get a second, third and fourth opinion until somebody comes up with a better answer for you.

    I entered the symptom burning feet into diagnostic software for you and it comes up with these 25 possible causes if any of them havent been ruled out they need to be, when I add paresthesia (numbness hands and feet etc) it narrows it down to 16 possible causes Maybe getting a doctor to look at these lists might help.

    From what youve written its sounds like you have been dumped in a convenient box by doctors who dont have a clue what is wrong with you, or what ME and CFS are, and if I were you I wouldnt accept the diagnosis and would be looking for another doctor, a word of warning, dont mention CFS to other doctors, it tends to stop them looking for other things and labelling the patients nuts, If they mention it to you tell them that you cant possibly have it because you dont suffer from debilitating fatigue. Best of luck with getting further testing done and I hope that the cause of your problems is found and treated soon.

    All the best
  10. Ocean

    Ocean Senior Member

    I wouldn't rule out CFS because you don't feel overly fatigued, or have noticeable PEM or cognitive issues. Neither did I, not in any way I recognized at least. I had other symptoms that were my main problem and this in part prevented me from getting a proper diagnosis since I did not have what are commonly thought of as the main CFS symptoms as a primary complaint, or even as a complaint at all initially. Today I have basically all the symptoms of both CFS and ME but it's been more than 10 years now since I first got symptoms. I wish I'd been diagnosed sooner as I probably could have prevented crashes and deteriorating to such low functioning. So my advice based on my own experience is to be careful and watch your exertion and pacing until you can be absolutely certain this isn't what you have, and do not assume it's not CFS/ME so quickly. Just my personal opinion. For what it's worth, I also share some of your symptoms.
  11. Crux

    Crux Senior Member

    Hi Phil ; This is my first post here ; So I'm likely to bumble, but the symptoms listed are likely those of a B12 deficiency. I have had the very same ones, including the numb lips. There are many causes of this, and there are many symptoms that an individual may or may not exhibit. My symptoms have shifted greatly over my lifetime, with fatigue that would come and go. These past four years, though, the fatigue has been a constant. I've learned that I need alot of B12 daily to function,and I'm learning so very much from this site. The protocols suggested here are the most effective that I've tried,so I think you've found the best site for information.
  12. AndrewB

    AndrewB Senior Member

    England, UK
    Im seven months into my second relapse and this time around im suffering most of the symptoms you describe, but im also suffering a whole lot more in addition
    to debilitating fatigue, which was the major factor in both the initial onset, and currently my second bout of severe illness.
    From what you say, i think you may be lucky and not have M.E, i honestly hope you don't have it.
    As the rest of the posters have advised, rest up, and see how you go. Ive been too ill to meet with a Neurologist, the general specialist diagnosed me
    because all my bloods tests were fine apart from a raised white cell count.

    Things i think contributed to my second relapse that could prevent you getting any more poorly ;

    Alcohol Consumption
    Over use of sleep meds
    Diet could have been better

    Looking back, all this things are definitely not recommended, but i wasn't diagnosed the first time around, and i thought id got better.
    I hope to get back to something of my old self again, but the crippling fatigue it refusing to budge, and since you don't that symptom,
    i think its more than likely you've side stepped quite possibly the worst long term disease known to man....
  13. pjs_1972


    Thank you!

    Dear all,

    Thank you so much for taking the time to respond. I really do appreciate it. Much to ponder... I'll let you know how I get on.


  14. Tony Mach

    Tony Mach Show me the evidence.

    Upper Palatinate, Bavaria
    I find it hard to judge whether the fatigue in CFS is something different than the "tiredness/weakness" you describe. That is one of the main problems of ME/CFS.

    If your situation is constantly bad and not worsening post-exertional, I would tend to rule out ME, but that is really difficult to rule out here and should be left to a doctor that has knowledge of ME/CFS. Getting a ME/CFS specialist to consult once or twice a year is something I would recommend if your condition does not improve, as they usually have seen all kinds of disease presentations from that spectrum and know best how to manage it regardless of the label you have at the moment.

    The question that is still unanswered by medical research is whether there is "one entity", let's say one Virus XYZ, that is causing a distinct illness, let's say ME. Or whether different causes (viruses, autoimmunity, etc.) can lead to superficial similar presentations of illness like PVFS/CFS/ME/Fibromyalgia/Whatever. So I wouldn't get too hung up on what label you have (if other possible causes like thyroid problems have been ruled out), because furthermore I am not aware of any significant differences in treatment regarding which label you have at least no differences in treatments that are scientifically proven to work. We have to wait until science finds out more

    Even if would not have ME/CFS, the best course would be to manage your condition (not go over your limits).

    As a personal tip: Look into the Paleo diet, or what Terry Wahls does with regards to nutrition.

    And there are people who just take longer to recover from a virus. I remember a study that Anthony Komaroff mentioned, done in Australia, that showed that some people need up to 2 years to recover for an infection the harder they have been hit, the longer it takes to recover. You mentioned a "particularly bad virus infection", so this might explain that you simply face a longer path to recovery.

    BTW: I find it interesting that "Post Viral Fatigue Syndrome (PVFS)" is still being diagnosed. I have no idea what the differential is with regards to CFS.

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