Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Perhaps its not CFS, your input is greatly appreciated

Discussion in 'General Treatment' started by crmfghtr, Jan 8, 2012.

  1. crmfghtr

    crmfghtr

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    Im beginning to wonder if I am on wrong track the last decade. I was perfectly healthy, got a head cold woke up foggy ears ringing. It lasted until cold was gone then I was fine for 2 months, until I got another head cold. Ears ringing, foggy again. Over the course of years it finally turned into massive fatigue. But if it was CFS would it have gone away when the cold was gone, like completely, then return with another head cold? Maybe I have something else causing this? Help?
     
  2. lnester7

    lnester7 Seven

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    At the beginning Year 1-3 I was not sick for more than a month, not good for longer that a few months, my onset was gradual. I would bounce back to nearly normal w the exception of some brain fog or IBS, Now(5 years) I last longer down. I haven't been officially diagnosed, I will know in a few weeks.
     
  3. alex3619

    alex3619 Senior Member

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    Hi Crmfightr, is always hard to say. However it could be both ME and go away. First I want to ask, do you suffer from post exertional symptoms that last days during these periods? Thats a sign of ME. Second, there are more than a few of us who got slowly sicker over time in stages, each stage marked by a flu or other infection. So it could just be your immune system over-reacting, or it could be the onset of ME, or something else. Without a reliable diagnostic test, everyone is in the dark. Bye, Alex
     
    taniaaust1 likes this.
  4. crmfghtr

    crmfghtr

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    Thanks guys. I guess I didn't consider the fact that it could have been the immune system trigger, then I just bounced back, but the next trigger pull could have been even worse. Yes, perhaps someday there will be true diagnostic tests for this, it is just so frustrating. I'm sure there is more then one of us that is sure he has it that might actually be a simple fix the doctors have missed, I keep hoping for that.
     
  5. crmfghtr

    crmfghtr

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    Forgot to answer your question

    About post malaise, as I was continuing to exercise for about 5 or 6 years and it didn't seem to have any ill effects, that is in the mostly brain fog days. Now I am just pretty much permanently wiped out, but exercise didn't seem harmful for awhile anyway. So I guess would have to check that off the list.
     
  6. Valentijn

    Valentijn Activity Level: 3

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    I felt pretty normal for a couple weeks between getting a flu and developing my first severe symptoms of ME (PEM in my case).

    If you don't react at all to exercise, then it might not me ME/CFS at all. But sometimes the reaction might be milder and more delayed, which can make it hard to pinpoint. Even before getting very sick, I would consistantly have the "flu" if I started any exercise program, but it was typically delayed by a day or two. The pattern makes sense in retrospect, in the framework of ME, but just seemed like bad luck with getting the flu/colds at the time.

    It's also possible that you your fatigue and cognitive problems are solely caused by orthostatic intolerance, which can be difficult to notice as a specific cause unless you're looking for it. Do you feel worse when standing/sitting up, or after standing up for a while, especially if standing still such as in the line/queue at a shop? Do you feel better after laying down for an hour or so, even if you don't fall asleep?
     
  7. alex3619

    alex3619 Senior Member

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    I developed obvious PEM when my illness moved from mild to moderate. Sufficiently mild ME might not show much PEM. However, as my symptoms got worse so did my PEM. As I was heading toward severe, from which I recovered partially, even minor activity caused PEM - like cooking dinner. During this period my health would crash every one to two weeks. Now I get milder PEM that resolves faster, but I am only a moderate ME patient now. Bye, Alex
     
  8. ramakentesh

    ramakentesh Senior Member

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    I have POTS/CFS and have never personally noticed ill effects from exercise beyond one or two hours afterwards. Some doctors suggest that PEM is a requirement for a CFS diagnosis and there are a variety of mechanisms that can explain this, some related to blood flow.
     
  9. taniaaust1

    taniaaust1

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    Have you considered you could be a person who only has POTS. It is quite possible to have that illness by itself and not have ME/CFS with it.

    POTS can be triggered off by exercise too (due to the being upright and also the heat trigger of exercise) but its effects arent delayed like they are in ME/CFS.

    In my own case when POTS symptoms are triggered off, Ive found they often only last a short time (when Ive had POTS bad enough to make me go unconscious, they do then last a bit longer eg in my case it can be for the rest of the day with overnight sleep/laying fixing it to when Ive triggered POTS symptoms off minorly.. in which case sympoms may only then last 5 mins and are almost immediately settled by laying down.

    When rather Ive triggered off the ME/CFS... I get a POTS crash but then recover from that and then 13-24 hrs later get the delayed ME/CFS crash of symptoms.

    Anyone who gets "no delayed reaction at all to exercise" but has POTS should strongly suspect they have been given a false ME/CFS diagnoses. Many doctors would find these two illnesses symptom wise esp as both have exercise as a trigger and like symptoms, confusing.
     
  10. crmfghtr

    crmfghtr

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    Yes I do feel better after laying down for awhile, sometimes much better after like a 10 minute nap, which is hard for me to nap its rare
     
  11. ukxmrv

    ukxmrv Senior Member

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    Any sinus issues or pain around the face at all?
     
  12. Valentijn

    Valentijn Activity Level: 3

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    You might want to take a look into Orthostatic Intolerance then, particularly Neurally Mediated Hypotension (NMH). With NMH your body has trouble regulating your blood pressure and the difference between the systolic and diastolic measurements gets very small, basically under 25.

    When that happens, it's difficult to get enough blood to the brain, which causes fatigue. But when you lie down, it's much easier for the blood to get where it needs to go and you'll feel a lot better after a bit.

    Another type of Orthostatic Intolerance is Postural Orthostatic Tachycardia Syndrome (POTS). With that one, your heart rate would rise drastically (30bpm or more) when standing up.

    They can both be tested with a tilt table test, though testing for NMH requires a longer test and the testers should know that they're looking for narrowing pulse pressure. You can also test for NMH at home with a blood pressure monitor, though most crap out if your pulse pressure gets below 20 or so, because at that point your pulse is too weak to be regularly detected by the BP monitor. You can test for POTS with a heart rate monitor.
     

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