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The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
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Do you work / have career?

Discussion in 'General ME/CFS Discussion' started by RedLineBoy, Jul 26, 2013.

  1. SickOfSickness

    SickOfSickness Senior Member

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    See if you match adrenal fatigue. That would be great for you if it's only your adrenals. Stress can probably trigger hormones to get out of balance too.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    RedLineBoy

    Unfortunately most specialists (over the gamut of specialties) have no idea how to test for and treat ME/CFS, so if you do indeed "have" it, you have not had the type of testing (except for the viruses) that would show up abnormalities.

    Do look at the International Consensus for ME and that will give more ideas about what they should be looking for.

    Sushi
  3. WillowJ

    WillowJ Senior Member

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    I think the moderate and somewhat severe patients are the ones on the forums. The mild ones (like you; I know a disease like this is never mild but it's comparative) are generally out trying to work and don't have energy to talk online. The very severe ones can't use a computer much or at all.

    Some people do get worse but that seems to be the minority. A different minority improve somewhat. Many people have a fluctuating condition that overall neither improves nor worsens.

    It is true that some of us (who are moderate/severe) have found that when we pushed ourselves to keep working or going to school when this seemed too difficult but we wanted to do it anyway, we ended up getting worse and we blame it on working "too hard" for our conditions.

    Light-headedness and concentration sound like that could be from orthostatic intolerance, which could be treatable. See if you can get a referral to a specialist who can figure out what type you have.

    Topiramate (Topamax) cannot be taken on an as-needed basis: it needs to be tapered up to an effective dose and then taken regularly with no missed or late doses (missing a dose can put one at risk for a seizure, even if one didn't have seizures previously), and to stop taking it safely, would need to be tapered back down.

    There is some advice in the Primers about specific medications: both of these appear there. Links toward the bottom of this page: http://naame.org/about-mecfs/

    a video presentation here:


    I'm sorry. This is unfortunately far too common. Some of us are working hard to improve the way the disease is studied and understood (and perceived), and to get funding. There was a time when multiple sclerosis, rheumatoid arthritis, etc., was thought of in similar ways. We seem to be stuck here for the moment, but good things are happening and the point is coming when everything will change, and people will know it's a real and a serious disease, just like Lupus or whatever.
    taniaaust1, ahimsa and Valentijn like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    To properly address symptoms with meds, its best to know what is causing them, take your headaches as an example .. an OI headache isnt necessarily treated with pain killers but rather may be treated by boosting blood volume (if the OI involves that), compression stockings if POTS caused etc

    If you have reactivating CMV and EBV causing you symptoms, that is what you need to get treated.

    "What I've been noticing recently is Monday are start of all fatigue and not feeling feel then by Wednesday I'm feeling better with clarity."

    If you work Monday to Fridays, the pattern of your ME/CFS would be a very strange as with this illness, one wouldnt be expecting to be becoming better in anyway on the Wednesday if you worked both Monday and Tuesday. You should be worst on the Wednesday in this situation due to the post exertional fatigue.
  5. taniaaust1

    taniaaust1 Senior Member

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    I just had a thought of another thing which could be causing the symptoms you quoted above. Have you had a 2hr Glucose Tolerance Test with the insulin included (the insulin levels arent usualy included unless the doctor specifies wanting those results too). I have hyperinsulinemia and when my insulin is too high it can give me ALL THE symptoms you said there. So I strongely suggest you to get a 2hr GTT done with insulin level included.
  6. RedLineBoy

    RedLineBoy

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    Are all these condition cause by CMV / EBV? In other words, did the viral activate certain condition?

    How as I all find and healthy before I came down with CMV / EBV?

    My insulin level are fine as my H1b report are typically normal. I lost a lot of weight few months ago by adhering to strict diet by cutting out bread. I felt good for a while, but nothing dramatic to ride on. My symptoms were still there even when I was losing weight.

    So I'm thinking that the virus is making our bodies react as well response differently.
  7. redrachel76

    redrachel76 Senior Member

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    I agree with Tania here. What you describe is not like post exertional malaise.
    Also like she suggests: Have you tried Valcyte or any anti virals for EBV and CMV?
    Valacyclovir for EBV
    Valganciclovir for CMV
    The only problem is that they are expensive. I knew a woman who was diagnosed with "CFS". She took Valacyclovir and voila! was well. I was very jealous as it did not work for me. So it turned out that she did not have CFS that they diagnosed her with, just an active EBV infection that was giving symptoms very similar to CFS.

    Yes many conditions can be caused by EBV. I once knew someone who actually got liver problems - jaundice from EBV. She also completely recovered.
  8. RedLineBoy

    RedLineBoy

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    I asked my doc about it and he says its not a good idea and that he will not prescribe it. Where do I find a doc to give me valcyte? I asked an ID doc before and he denied giving me the pills by saying there only need it if you have low immune system.
  9. RedLineBoy

    RedLineBoy

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    The big question, why would EBV / CMV reactivate? Reactivation = CFS? Is this not true?
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Many possibilities as to why they might reactivate but there is usually more than this going on in ME.

    Sushi
    taniaaust1 and WillowJ like this.
  11. WillowJ

    WillowJ Senior Member

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    There are also other diseases which are also associated with reactivation of viruses, or in which reactivation of viruses can be a problem. Usually it's not a problem unless there is something the matter with the immune system.

    We do not know at this point whether such infections are a cause or a symptom.

    From Stanford:

    for HCMV:
    HHV-6:
    enteroviruses:
  12. August59

    August59 Daughters High School Graduation

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  13. RedLineBoy

    RedLineBoy

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    So why not allow doctors to treat ebv, cmv and hhv 6? I assume if those virus are treated then I see no way of individual developing CFS? How many people on this board can say they have CFS without any of these viral infection?
  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I was not tested (or even diagnosed) when I came down with CFS, so I have no idea what caused it. I would guess there are many here in the same situation.

    Allowing doctors to treat ebv, cmv, and hhv6 assumes that they want to. Some don't.
  15. vamah

    vamah Senior Member

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    A lot of doctors just don't believe that these viruses can reactivate and cause problems later in life. I had an infectious disease " specialist" tell me as much and refuse to even test me for them. I paid several hundred dollars to have the tests done myself by going outside my HMO and it turned out my HHV 6 levels were through the roof. I think my HMO doctor wouldn't test for 2 reasons: because he was too arrogant to consider that he might be wrong and because if the HMO tested and I was positive they would have to pay for the very expensive drug (valcyte) used to treat it. I am fortunate that I had 1) the ability to pay for the tests and doctor bills myself and 2) a friend who wouldn't let me give up until I got some answers. As it is, I have been on valcyte for 6 months and my viral level is still very high (although lower than before) so this is not the end of my search for answers, but I learned to have faith inmy own judgement and not let doctors convince me that it is all in my head and treat me with only increasing doses of psych meds. I hope you are able to find some answers. It is easy to want to give up when you have an illness that officially doesn't exist, but I encourage you to keep pushing.
  16. Thomas

    Thomas

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    That's just not true.
  17. taniaaust1

    taniaaust1 Senior Member

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    bluestems comment was true unless one has an exceptional doctor who is managing to treat most of his ME/CFS patients. One study done showed that hardly anyone at all did recover.

    Most ME/CFS patiences thou do learn to "manage" their symptoms better with time even those who may be in fact getting worst. One can follow three routes long term with ME/CFS.. improving, stable or worsening. No one can honestly tell another what path their ME/CFS will take.

    Too many doctors try to play this illness down to their patients (as they dont want to cause anxiety, depression or whatever.. maybe they dont like to think about patients getting worst under their care? as that is like them failing), I think most at this site has experienced a doctor playing down the illness at some time or another. (In my own case it was the doctors who told me I was likely to be recovered in a couple of years. Its now 16 years later. I nowdays have a lot of damage in my body too with lots of abnormalities due to the ME, EVERY YEAR, Im developing new issues with this illness and more complications eg last year my bowel prolapsed due to the IBS-C which is one of my symptoms).

    Im currently in a follow up study to possibly vertify findings from a study I was in 7 years ago. That being that our midbrains (one of the most important part of our brains as everything else passes throu there), those with ME/CFS are loosing white brain matter at a rate of 1% per year. The graph of damage to our brains actually matched how long we had been sick for.
    ahimsa, redrachel76 and Valentijn like this.
  18. Thomas

    Thomas

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    I am still working in my job in sales...but just barely. I never really took a leave of absence in the beginning and just trecked along as best i could. Ya i probably over did it a bit but i've never really heard of anyone getting better from doing nothing. I may not be able to work much longer but who knows maybe i will.

    Besides, there is no proof that if i stopped working that i wouldn't have declined slightly either. Or maybe i would have been a bit better but still not perfect and then find it impossible to bet back into a career i left for a year or more. you have to consider all the alternatives. and the countless people that probably have ME, struggle with work and life but also don't hang out on forums like us. its a big world out there and we are a tiny drop in the ME bucket.

    Diseases don't always conform to lifestyle. You don't hear people with MS or HIV or Parkinson's say that if they just stayed home more perhaps their illness wouldn't have progressed. But what do i know? Ive only been sick for 22 months.
  19. Thomas

    Thomas

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    Ya i have had doctors play down my illness but maybe they will end up being right. Besides, i have heard plenty of doctors in interviews (lapp, hyde, peterson, bell) say that recovery was tough but substantial improvement was common. Who knows, time will tell. As for studies, every ME study is wrought with holes and inconsistencies and poor overall data and findings.

    I feel like men have better recovery statistics with this illness than women - that js not meant to be sexist - I think this is true with most chronic and autoimmune illnesses.
  20. taniaaust1

    taniaaust1 Senior Member

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    Some of us at this forum have gotten weller some by aggressive rest therapy (ART). I actually had a full remission for 2-3 years due doing that. I recovered completely for a time from a bedbound state (it happened very slowly the recovery but it was all due to ART. I was recovered during that time, I even was able to run in one of the worlds longest marathons during it.

    Many of us can say we actually did get a lot worst from pushing ourselves re work or studies, my case has a clear correlation to that.
    Valentijn likes this.

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