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Do you have these symptoms ?

Discussion in 'General Symptoms' started by Mayna, Mar 19, 2013.

  1. Mayna

    Mayna

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    Hi,

    In December the 1st of 2012 , I felt heartbeats in my head and a sudden extreme fatigue. The same day, I had a cold which lasted 3days
    My fatigue and pounding in head never went away eversince, and I also feel a tension in my neck ( as if it was stiff)..
    Now , I'm so tired i had to stop my studies.
    I could'nt find anyone on the web who have the same symptoms as I have...
    Do you have these symptoms? ( extreme fatigue+tension in neck + pounding in the back of the head ?) Could this be CFS?

    Thank you very much for your answers !

    Marianne
     
  2. Mayna

    Mayna

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    (PS: I tested for Lyme, EBV, Thyroid , iron , and had a cerebral irm)
     
  3. maryb

    maryb iherb code TAK122

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    Hi Mayna a lot of us had sudden onset symptoms - that never went away. So sorry to hear of yours, one of my symptoms is constant extreme pressure in the head, had a lot of neck and back problems since I've been ill, that is where the EBV virus likes to hang out from what I've read.

    Don't know where you are but you need to try to find a doctor who can rule our other stuff to try to get a diagnosis of ME. At least then you know what the road ahead is. A lot more chance of recovery if the illness is treated quickly, again from what I've read.
     
  4. Valentijn

    Valentijn Activity Level: 3

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    The "fatigue and pounding in head" and neck tension might all be from orthostatic intolerance. Muscles often tense to try to help keep blood flowing to the brain, and sometimes heart rate becomes very rapid or very strong to try to compensate. If it's POTS, then heart rate is pretty normal laying down, and rises 30 or more beats per minute when standing up. If it's NMH, then blood pressure and/or pulse pressure may get very low, but this will usually be delayed, sometimes by half an hour or more after standing up.

    If you have ME/CFS, then it's likely you'd also have Post-Exertional Malaise, which causes flu-like symptoms (full-body aches, pains, wiped out, etc) minus the fever, and usually starts about 24 hours after exertion.
     
  5. leela

    leela Slow But Hopeful

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    These sound like viral symptoms to me, like from EBV/Mono, or viral meningitis as precipitated by any of the herpes family of viruses (EBV,CMV,VZV, etc)

    Since this so recent, I reckon you have a really good chance to nip this in the bud before it going chronic, if you can find someone to help you treat your infections (viral and spirochetal) and support your immune system.

    Best of luck!
     
    Tristen likes this.
  6. Mayna

    Mayna

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    Thank you all for answering!

    Concerning the ebv issue, the tests say that I don't have an acute infection, but an old one. And no CMV, toxoplasmosis... Could a reactivation cause this?
    The only thing is a big pounding and tension in neck , almost unbearable (but the IRM of the neck showed nothing).

    I have tested:
    Homeopathy
    Risperidone at low dose (suppose to free dopamine in the brain )

    Think of testing:

    Modafinil?
    Immunovir?

    maryb: when you say "the virus likes to hang out in the neck/back parts", do you mean in the glands of the neck?

    @Valentjin : post exertional malaise is after a mild effort(just walking) or after a big one (like running, jumping...)? Because I can walk -slowly- without feeling the repercussions 24hs after.

    leela: We don't have a lot of specialists here (In France) , a so-called specialist of fatigue basically told me nothing could be done (great...) .


    Mayna :)
     
  7. Valentijn

    Valentijn Activity Level: 3

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    It can vary a lot, from one patient to another and from week to week. I one had 2+ weeks of PEM from clenching my fists for a few minutes as part of a "relaxation" exercise. And some people only get PEM if doing an intense workout.

    But basically it should be the entire body reacting 24 hours later, not just the muscles which were (over)used.
     
  8. leela

    leela Slow But Hopeful

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    Tu pourrais peut-être téléphoner aux bureaux de Dr. DeMeirleir en Belgique pour demander s'il
    pense que tu devrait aller le voir...
     
  9. maryb

    maryb iherb code TAK122

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    Re EBV - No not in the glands in the spinal column.

    Who is testing you? a GP if so you are very lucky. You need to get as many tests done as possible under healthcare to rule out stuff before you seek out ME specialists. You mention thyroid, are you being treated for that, many patients with ME have thyroid problems.

    If you can ,check out Dr Myhill's website lot of useful info on there re supplements, start with the basics and add others in slowly.

    Re docs - how far can you travel? And more importantly how much can you afford? This is the big problem with this illness most of the ME doctors are private. I would go to the US to see maybe Dr Enlander if I could travel and could afford it.
    Also you have Kenny de Mer-leir not far away in Brussels. Also Breakspear Clinic in Hertfordshire England.

    Once you start looking at docs you really need to do your homework, it can get very costly.
     
  10. Mayna

    Mayna

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    @Valentjin: Idk, I remember going in a mall and feeling so weak, but the malaise was right away, not after h24..

    leela and maryb : Here in France it is pretty affordable to consult a doctor (because of social security), but none will really search very much once you have a chronic fatigue. I've heard of Dr De Merleir but i'm affraid he could be soooo expensive...

    No i don't have thyroid issues. I have made a lot of tests, (really a lot) and nothing came out. My problem is that the specialist of fatigue here , don't recognize a ME sufferer in me because of the symptoms
    Without a diagnosis of CFS, i can't continue studying because i won't have a timetable laid ...

    Can I ask you what your symptoms are, if you don't mind? because I don't really get the fukuda criteria since they are so numerous!!

    I really thank you (a thousand times) because your answers are so precious to me.
     
  11. taniaaust1

    taniaaust1 Senior Member

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    I strongly suggest that you do not go thinking you have ME/CFS unless you are meeting something like the canadian consensus definition (which is a good one) as too often this diagnoses is used as a waste basket diagnoses with many CFS patients having missed diagnoses. Im sure there is an another medical issue which can cause the symptoms your mentioned (I cant think of its name thou) and as another mentioned OI (orthostatic intollernace issues) can cause those two symptoms too.

    http://sacfs.asn.au/index.html If you scoll on the right you can find the ME/CFS A clinical case defination and guidelines for MPs and overview of Canadian diagnostic criteria and other diagnostic criteria.
     
    Nielk likes this.
  12. taniaaust1

    taniaaust1 Senior Member

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    The Fukuda is a watered down version of ME/CFS and has far less symptoms then most have, ME/CFS is far from just having a few symptoms. I suggest to read the following symptom list based on research http://wwcoco.com/cfids/bernesx.html . Its truely a very severe and very serious illness. I myself get over 90 symptoms from it. (The Empirial defination is even more watered down then the Fukuda and should never be being used.. the more watered down the defination..the more people who are later found to not have ME/CFS but have been wrongly diagnosed sometimes with other things which could of been treated).

    Post exertional fatigue or malaise (as its usualy more then jst fatigue and can often have a sicky ill feeling to it too).. usually comes on delayed.. eg 24 hours afterwards on top of the other tiredness which can (but may not) be constant. It is the delayed impact of the post exertional symptoms which can help tell this illness apart from many other illnesses.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    Without PEM being present, ME/CFS seems unlikely. Orthostatic Intolerance would explain your symptoms without over-complicating things, and is relatively easy to test for and is usually very treatable.
     
  14. Mayna

    Mayna

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    OK! Thank you verymuch (merci beaucoup), i will ask to be tested for that!
     
  15. Dmitri

    Dmitri

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    I have CFS along with those symptoms for as long as I remember. The intensely painful pounding in my head is one of the worst parts of this condition. It is accompanied by tension in the neck too. The pain/pulsation is most prominent on the sides of my head, symmetrically and roughly where the vagus nerve is supposed to lie. It does feel like a heartbeat, and I feel this discomfort every second of every day. I often feel it in stomach, teeth, nose, cheeks, etc. as well.
     
  16. leela

    leela Slow But Hopeful

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    In my case, I did not get recogniseable PEM until several *years* into the illness. I did not have it at the time of diagnosis (which was based mostly on chronic EBV titers and other blood/gut stuff.)

    Similarly (and this is apparently not uncommon) I began with hypersomnia, sleeping unmoving from the corpse-like position, for ten hours solid. It wasn't until several years later that the sleep problems began.
    In general, the illness looks very different seven years down the road than in the years it began.

    I feel for you, Mayne, because back then, even *with* the diagnosis of CFS, I felt I did not fit the definitions I read, or
    the experiences of others. Fortunately, there is much better info more readily available now, and starting with the CCC or ICC will be more helpful than Fukuda.

    I would also consider that you may not have turned the corner to ME. You really may be experiencing some kind of lingering post-viral something or other.

    This is a good book on the subject, and I notice they have an e-reader version:
    http://www.amazon.com/Viral-Immunit...kmr1&keywords=viral illness oriental medicine
     
  17. Mayna

    Mayna

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    Thank you , :).

    I didn't know there was other criteria exept the fukuda ones!

    So I think i will just try to ease the peripheric symptoms , like pounding in head+the tension in neck but I don't know if it is possible, i feel it just arrived with the fatigue.

    leela: Yes your are right I am sure the exhaustion is due to a immune dysfunction since it came after a cold.. I feel I meet some criteria of the ICC, but not a 100% to be ME. I sleep a lot too (12h a day) , that is why a doctor told me about modafinil (have you heard of it?)

    Dmitri : Thank you for your answer ! Did you manage to ease those symptoms with some drug or kinesitherapist or osteopath ?
     
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The PEM commonly appears between 1 and 3 days after exertion. Mine used to be 2 days later almost like clockwork, then I started leaky-gut diet and supplements and after a while the PEM almost disappeared completely, after gradually getting more and more delayed. When I accidentally increased carb intake again for a couple of months, the PEM seemed to return although it was now hard to identify how long the delay was.

    Re symptoms (and much more) there is an excellent e-book which is very cheap here:

    http://www.amazon.co.uk/Chronic-Fatigue-Syndrome-Treatment-ebook/dp/B009B9X36Y?oo=0

    You can also get the first edition in paperback, but the good thing about the e-book is that you can do word searches in it.
     
  19. Dmitri

    Dmitri

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    Mayna My CFS was caused by medication, so taking any further drugs causes severe nerve damage. I didn't get to try osteopathy yet. Do you feel the beating most prominently on the sides of head or in the back?
     
  20. leela

    leela Slow But Hopeful

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    Mayna,

    Modafinil is a stimulant*. Depending on where your adrenals are at, this could push them too hard.
    [*On further investigation I got this a little wrong. While it does effect noradrenaline, it has other modes of action in the brain (including increasing histamine--not great for some of us) and increasing dopamine (good for some of us.) In general, my personal feeling is, if the body is tired, it wants you to rest. Inhibiting it from doing so could make things worse. I know someone who is not ill who travels a lot and uses Modafinil for jet lag and likes it. If you're sick though, not so sure it would be great in the long run. But this is just my personal opinion.]

    There is an amazing osteopath in Grenoble, Jean-Pierre Barral. I don't know if he's still practicing, (he teaches a lot) but when I used to see him, (before ME,) I found him to be totally tuned in and doing incredible work.
     

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