Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Can you go from severe to moderate.

Discussion in 'General ME/CFS Discussion' started by nikefourstar, Jan 22, 2017.

  1. nikefourstar

    nikefourstar

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    Im just wondering since I started out so bad basically started from severe but if not developed it in the last couple of months. So can someone go from severe to moderate is it possible when you start out so bad? Has anyone known anyone that has improved from being bedridden.
     
    Last edited: Jan 22, 2017
  2. Cheesus

    Cheesus Senior Member

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    Yes, absolutely. In fact many patients improve over time regardless of initial severity. From what I have read, severity at onset does not necessarily impact long-term prognosis.
     
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  3. Cheesus

    Cheesus Senior Member

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    I want to add to what I said earlier. Historic patterns of disease progression in ME are not necessarily good indicators of the future pattern of disease progression in ME. Why? Because there is a good chance that patients will be able to access evidence based treatment within the next few years.

    So, whilst I still stand by what I said - many patients do improve over time, and severity does not necessarily determine whether or not someone improves - the future looks bright for ME treatment, and you will not just have to hang onto hope that you will be in the category that improves over time. Instead you should be able to access proper treatment that can help you improve, regardless of whether or not the disease would have improved by itself anyway.

    Hang in there! Help is on the way.
     
  4. ash0787

    ash0787 Senior Member

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    well there are people that get into a severe state but then recover out of it, but I don't know necessarily
    what state those people started in, Jenn Brea seems to have started moderate then declined into severe from the stress of the diagnostic process or possibly it was inevitable, Witney seems to have started mild then got consistently worse over time, same with the bodybuilder guy from forgotten plague. I can't really see a trend to be honest just based on those examples.

    At one point I couldn't even listen to an audiobook and I had to cover my eyes completely unless in a very dark room,
    but now I can basically do anything as long as its done while sitting down ( though I can stand for approx 30 minutes ) e.g.
     
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  5. Denise

    Denise Senior Member

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    As with so many things about this disease, there is little solid research about the natural history of this disease.
    Many people experience periods of worse and slightly improved health. (For some people there is significant improvement.)
    There is also no way (that I know of) to be sure that the periods of worse or better health are truly lasting (as in for the rest of one's life).
    It is also difficult to say if improvements are just a result of better compensatory measures and greater familiarity with one's limits.
     
    Hutan likes this.
  6. *GG*

    *GG* Senior Member

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  7. maccas dad

    maccas dad

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    Yes I believe you can go from severe to moderate. I was not aware I had ME until 5 years ago when I had a serious relapse in my health. I considered myself quite severe at this time. I kept a diary of symptoms and had about 40 over a 3-4 month period. 5 years on I think I am moderate with I guess up to 10 identifyible symptoms. I cannot walk very far which is my main symptom and I need to be careful not to shock my system. I think when you suffer a serious relapse this illness initially bombards the body and then eases over time, well this is my experience if it helps.
     
    lafarfelue likes this.
  8. erin

    erin Senior Member

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    I was bed ridden for less than a year, 3 years after infected. I improved slowly and had short relapses during improved/ improving state. I had another relapse a year after, for approximately 3 months. Then, on the rise again and not been bed ridden since 2010. But I am not recovered at all. Can't work since the first bedridden episode, tried part timeing, couldn't manage it. I'm house bound most of the time, there are episodes I feel seriously well but they are short lived.

    But to be honest it's not that bad. Surely I would like to feel well all the time, or at least most of the time. Still, I consider myself lucky after the bed bound episode. I know what it could be like, almost choking with tears remembering that time... It was awful, and I know some of us are unlucky and they are not doing well at all. My heart goes out for them, wish them and everyone better health.
     
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  9. Dainty

    Dainty Senior Member

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    As I said in one of your other threads, yes, I have! :) And I have known others who have. And others have replied to your other threads that they have.

    But we all did it by going to doctors, getting medical testing done, and moving forward with treatments.

    I spent years barely able to get out of bed to crawl to the bathroom, taking breaks to rest or even nap along the way. On my worst days, I couldn't even do that. I spent hours at a time too exhausted to be able to even flip over in bed.

    And yes, I got better. A lot better. No matter how many threads you make on this subject, my answer will remain the same! :p

    We all want you to get better, too, which is why we say please go to a doctor. Get supportive treatment. Start the process of finding what helps your body. That is the direction of hope, not in 10 hours of research per day and no action.
     
    Last edited: Jan 22, 2017
  10. hellytheelephant

    hellytheelephant Senior Member

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    Yes, I was severly affected in '90's and spend 4 years glued to my bed. I recovered to about 75% of function...then slid downhill again and now am mainly bedbound.
    Don't give up hope- the future hasn't happened yet:hug:
     
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  11. nikefourstar

    nikefourstar

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    @hellytheelephant can I ask what your symptoms were? Were you too weak to use your muscles? That's how it's happening for me I'm slowly losing function of my muscles, they are becoming weaker and weaker. I'm just wondering what your story is because it doesn't seem like mine is like anyone else's and it's all happened so fast that I haven't had time to get to a cfs doctor because I've become so weak in such a short amount of time, I wouldn't be able to get anywhere now,
     
  12. hellytheelephant

    hellytheelephant Senior Member

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    I had recurrent viral symptoms, ( sore throat constantly, sinus infections), achy and exhausted body, PEM, legs hurting after doing very little walking, weakness, yes and also inpaired cognitive function. Also mutiple allergies and killer migraines, light and sound sensitive etc.

    Which country are you in? Are you well enough to have an appointment over the phone?
     
  13. geraldt52

    geraldt52 Senior Member

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  14. Sushi

    Sushi Senior Member Albuquerque

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    Do you have family who could drive you? Many here go to their doctors using a wheel chair. You can rent one easily if needed.
     
  15. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Go see a doctor.

    Ask for help!


    You can improve. To do so you must see the right doctor. If you can't get there by yourself you must ask for help.
     
  16. nikefourstar

    nikefourstar

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    I have seen a doctor I did it in the very beginning got full blood work, stool sample, urine test. Everything came back fine. I can't get to a cfs doctor but I am going to try and see if I can have an appointment through Skype or the phone but I have gotten the tests
     
  17. Sushi

    Sushi Senior Member Albuquerque

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    It is not very likely that (if you do have ME/CFS) you were given the tests that might show abnormalities--doctors who don't specialize in neuro-immune diseases just don't know what tests to order. You mentioned that you are in Philadelphia--there is an ME/CFS specialist quite close to you in NYC--Dr. Susan Levine. That should be doable.
     
  18. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Good! Make it happen. Could you get to a CFS specialist with help? Someone to push you in a wheelchair and drive you or escort you on the train and in a cab? Dr. Levine is in New York. If you need help ask your family, friends, neighbors, religious organizations, etc.

    Never Give Up!
     
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  19. ghosalb

    ghosalb Senior Member

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    nikefourstar my relapses started with severe muscle weakness but slowly improved.....also I improved with more nutrient rich diet than any supplements and lots of rest/pacing. But you have to make sure you do have ME/CFS first.
     
  20. nikefourstar

    nikefourstar

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    So I didn't even realize until a couple days ago that most people on here are mild/moderate people considering I'm 98% bedridden. How many people are like me that are bedridden that can't really tolerate the tv?
     

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