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Does anyone think they could have something else?

Discussion in 'General ME/CFS Discussion' started by JBoneske, Apr 16, 2018 at 5:16 PM.

  1. JBoneske

    JBoneske

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    I’m sure you’ve all been thru thousands of tests. I know I have and seem to be running low on what else to test.
    I was just kind of wondering the mindset of you. Do you ever think there still could be another possibility? Possibly something you could defeat. If so what and what can you do about it?
    There’s a pretty decent chance that if I ever get diagnosed that ME/CFS will be it. That just seems really scary because you have to know for sure that you’ve ruled out anything else that it could be and CFS/ME is not curable. Any other chances for you guys that you can think of?
     
  2. JBoneske

    JBoneske

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    Sorry, or is it(CFS/ME) the only thing it could be because there ain’t anything close?
     
  3. BadBadBear

    BadBadBear Senior Member

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    Since I think mine is viral in origin and I don't have autoimmune issues, I think there's some chance mine could be some sort of post viral fatigue issue that could eventually get better.

    As I've said here many times, I've only tested positive for ONE damn virus, EBV, and yet I still can't get better and I'm "just" mild-moderate. I always feel so bad for those who are worse off than me, with more viruses and autoimmunity that they struggle with. I honest cannot TRULY understand the suffering that some here go through and I sometimes feel like a total jerk when I talk about how much I am able to do. And yet even in my uncomplicated case I think there is little hope for a cure.

    A trace of hope, yes. But not much.
     
    mrquasar, Wayne, pattismith and 2 others like this.
  4. Nanni

    Nanni

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    I’m a newbie on this site so this is totally about my impressions. The short answer is yes. I have read about people having Lyme disease, mold, parasites to name only a few.. There seems to be several ways of approaching the big picture which for me is just wanting to feel better, hopefully by actually recovering, or improving but at least by addressing specific symptoms. I haven’t had the extensive tests done that are available. What my doctor did was rule out possibilities like ms, diabetes, thyroid and such. The naturalpath looked at my story and the checklist of symptoms and narrowed it down more but the only treatment from them that helped was my own program of hydrotherapy and acupuncture twice a week for two years. But in terms of feeling diagnosed with ME, I can’t really know for sure even though I had a classic start to getting sick. Two months after a mild flu I had to shut down my dream, a business that was10 years in the making. I was in shock that I couldn’t push myself through it, but the fatigue was too debilitating. But what has helped is following my symptoms like bread crumbs and working towards improving my health, addressing any imbalances every way I can, including emotionally, and spiritually.

    I’ve had to address specific issues like my thyroid, gut issues, chronic pain, sleep and more but I have improved. The Book From Fatigue to Fantastic is helpful for doto getting symptoms in check and one’s health maximized. The thing that I believe is unique to this disorder is PEM, post exertion malaise but don’t quote me. I know how much I can push myself, determination wise, and I still can’t accept that I will pay dearly if I do. What happens to me is that usually the next day I have very painful fatigue and my gut can really flare up. Then if I don’t get good sleep It can all get even worse so nipping symptoms in the bud is critical for me. I am able to do about 4 hours a day of mild exertion including mental and that’s my energy envelope.

    I think you have to really just tune into what your body is saying. We know ourselves better than anyone else could. Sometimes I read something here and it feels like a yes, try that. It’s frustrating for all of us who have to go it alone without the support of the medical community. But there is a lot of great information right here. Best of luck.
     
    Wayne and Raven Mom like this.
  5. Nanni

    Nanni

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    I haven’t been tested but i think mine is viral. My symptoms came on fast and furious after a mild flu. I have a few other things going on with my gut and endocrine system that are issues as well however, I think I have noticed an improvement for the viral part from hydrotherapy. You really need a doctor to approve of it though. I’m basically bringing on a fever with a lot of saunas. I’m careful with staying hydrated, going in and out of the heat but I’ll do it for an hour or more. Then I get a fresh veggie juice on the way home. Unfortunately I can’t always just get in the car and go. Frustrating.
     
  6. Dechi

    Dechi Senior Member

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    Yes. I’d like to get tested for myasthenia gravis. Just to make sure I don’t have it. Sometimes I think I might have it, other times not.
     
  7. Martial

    Martial Senior Member

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    Even if there is not a single one proven cure, you can still hope for remission either way.
     
  8. Neunistiva

    Neunistiva Senior Member

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    There are several illnesses that are similar, each almost as unresearched as ME/CFS: Lyme, MCAS, fibromyalgia, small fiber polyneuropathy etc.

    We need research into all of these.

    Lately there's even been talk that Chiari malformation, or cervical spinal stenosis can produce synptoms similar to ME/CFS.

    While keeping hope is important, it is also imporant to face reality: great majority never enters remission. It is extremely important that we keep advocating, donating and fighting for a cure. It's not going to happen on its own while we wait for a miracle.
     
  9. Martial

    Martial Senior Member

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    Yes of course, not to take away from advocating, donating, or finding a full cure. And thankfully there are researchers who are hard at work at just this too.
     
    Neunistiva likes this.
  10. notmyself

    notmyself Senior Member

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    i don t know if i have ME or not, all i know i have improved a lot..everyone can..doesn t matter the diagnostic..what is ME anyway?!
     
    ChrisD likes this.
  11. Neunistiva

    Neunistiva Senior Member

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    A very serious, disabling and common illness, well defined by ICC, IOM and CCC criteria, that is 3 times more prevalent than multiple sclerosis, and more disabling than most other chronic illnesses.

    I know what you meant, there is no biomarker and it is possible that there are subsets that will need different treatments, but let's not pretend that ME is a nebulous term that could be anything.
     
    Webdog, Wayne and BadBadBear like this.
  12. ChrisD

    ChrisD Senior Member

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    Despite experiencing all the symptoms of ME (including PEM), I've always felt my symptoms were a bit different when discussing them with other patients at clinics/ME groups - as in I don't have the constant fluey feeling and sore throat etc. I have more issues with connective tissues and balance/coordination which has left me wondering if I have MS/EDS/Ankylosing spondilitis/Lyme disease which has led me into the process of getting a rheumatology referral and more rigorous Lyme testing.

    But under the NHS I have the diagnosis of 'fatigue' despite journeying through the assessment process at the ME/CFS clinic, they are reluctant to actually give me a written diagnosis - ''You have the clinical picture of ME/CFS'' :bang-head:
     
    pattismith likes this.
  13. glockola

    glockola

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    Chronic Fatigue Syndrome. A syndrome is a set of medical signs and symptoms that are correlated with each other.
    People can have undiagnosed and subclinical forms of disease which are difficult to diagnose. Someone with severe and disabling fatigue can get the label CFS.
    But most people with this "syndrome" can be suffering from completely different disease states. But which have in common that they present with a similar clinical picture.
     
  14. soundasacrystal

    soundasacrystal

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    I wonder if i have Gitelman syndrome. It's a genetic kidney disease that causes potassium, salt, and magnesium wasting. Potassium, magnesium, and salt supplementation help me a lot.
     
  15. BadBadBear

    BadBadBear Senior Member

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    I had looked into all sorts of salt wasting syndromes as well. I seem to hold potassium well until once and a great while it drains out like someone pulled a plug. I can never hold onto salt, and as my illness progresses my levels drop a tic lower every year.
     
    soundasacrystal likes this.
  16. BadBadBear

    BadBadBear Senior Member

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    I don't find hope especially useful. I get my hopes up every time I have a remission, I start making plans for the future, and it crashes down. Eventually the 'ups' become 'downs' because I know how they end and that they do not last (I personally am more likely to push harder and overdo it when I have hope, which only makes the end of an upswing that much worse).

    I prefer to live one day at time, as no amount of fantasizing about a cure (or keeping hope) changes the reality that each day has its own limits that cannot be predicted by how the day before it was. The days I am not making plans for tomorrow are the days that I am better able to rest and not spend futile energy cycles on worry or hope.

    I am really and truly OK with reality, I accept my fate. Today is a rest day, who knows what tomorrow brings. I used to say a resounding f-you to my disease every day only to find it says f-you back and it has bigger teeth.
     
    mrquasar, Raven Mom and Sundancer like this.
  17. Nanni

    Nanni

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    For me the bottom line is that if you have a medical condition that changes your quality of life and no one knows what to call it or will even acknowledge it, well it just sucks but you still have to chip away at feeling better. Apparently no one is going to be able to definitively tell me what’s wrong with me, at least not now, and I have to accept that. What choice do i have but to learn as much as I can and feel my way along. I am treating specific symptoms like my thyroid and gut stuff but I keep learning more and sometimes I feel inspired to try something new for addressing the bigger issue of fatigue, pain, cognitive fog etc by addressing methylation, or I try anti viral measures or do some detoxing, all which have helped by the way, but it had to feel right. Seems like even though there’s so many variations of symptoms we talk about here, there’s a core something that ties us together. My two cents about what “it’s “ all about is simply that the body’s ability to self regulate has broken down, over taxed by so many toxins, including stress hormones, and all the thousands of chemicals in our food,water and air and as a result chaos is ensuing. If the body doesn’t do a fair amount of self maintenance a lot can go wrong.
     
    Wayne and Dakota15 like this.
  18. Nanni

    Nanni

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    Does anyone know of another disorder in which PEM is a symptom?
     
    Mel9 likes this.
  19. Rossy191276

    Rossy191276 Senior Member

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    A small % of people with ME will in fact have a Genetic Mitochondrial disease... post exertional crashes, muscle weakness, fatigue, dysautonomia, migraines, and i’m sure other symptoms part of CCC and ICC diagnoses are all common to mitochondrial disease... I have read many accounts of people with diagnosed genetic mito that seem very similar to ME...
     
    Diwi9 and ryan31337 like this.
  20. wastwater

    wastwater Senior Member

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    I’m always looking for a better explanation while I wait for the science on me/cfs to come in
     

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