Our Newly Ill Face Their First Holiday Season with ME/CFS
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
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Is there anyone on this site who is recovered?

Discussion in 'General ME/CFS Discussion' started by Aerose91, Aug 5, 2018.

  1. Aerose91

    Aerose91 Senior Member

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    I have ao many questions for this potential person.
    What path did you take when returning to life?
    Were you able to explain to people why you missed so many years?
    Did they believe you?
    How do you cope with all the time lost once perspective returns?

    #2 and 3 are my most curious. I always feel like no matter what the outcome i can never tell anyone about this illness because there's no way they'll believe me. So it feels like i just have to avoid it however possible while accepting that I've lost so many years
     
    Heartl, Marley101 and perrier like this.
  2. Wonkmonk

    Wonkmonk Senior Member

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  3. Wonkmonk

    Wonkmonk Senior Member

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  4. Aerose91

    Aerose91 Senior Member

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    God, how much i would love to have my illness remedied by one supplement that triggers the turnaround. Not to take away these people's suffering but im curious if anyone who was a severe, complicated case has found their way out
     
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  5. pamojja

    pamojja Senior Member

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  6. TenuousGrip

    TenuousGrip Senior Member

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    Sometimes people ask a question like this because they want it to provide them with hope -- hope that they can get better.

    Makes sense, right ?

    So I think it might be worthwhile to point something out that may or may not be intuitive: asking how many severely ill PWME have recovered ... on a forum like this one ... can be the equivalent of walking into a bar and asking how many people have totally stopped drinking ;-)

    Many times, people who have made dramatic recoveries don't stay on ME/CFS forums.

    I just didn't want you to be disappointed if you didn't suddenly hear hundreds of uplifting stories :)

    All the best ....
     
    Hufsamor, Heartl, Peter Pain and 10 others like this.
  7. Wonkmonk

    Wonkmonk Senior Member

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    I think one can also list Keith Jarrett here (though I don't think he ever was on this site).
     
    Last edited: Aug 5, 2018
  8. ljimbo423

    ljimbo423 Senior Member

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    Excellent point! I know of 3 people that have recovered in the last 2 years. Two are 100% recovered and one was functioning between a 9-10 on the bell scale when they left this forum a year or so ago.

    One of the others also was a member of this forum but no longer comes here because he is 100% recovered and living life.

    The third person is a member of the Prohealth forum but rarely posts. She walks for miles and spends hours dancing regularly without any PEM or ME/CFS symptoms at all.

    I am very confident that recovery is possible and these are just a few examples.
     
    Hufsamor, Heartl, Peter Pain and 5 others like this.
  9. Wolfcub

    Wolfcub Senior Member

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    I get spontaneous, quite random remissions. At first it was for an hour or two and those odd hours felt like the "eye of the storm". I couldn't trace it to anything I had done, not done, eaten, taken, or anything else.
    Then the hours expanded into the odd day or two. Again no logical explanation.

    It surprised me when that changed into a few days at a time. And I do mean a few days feeling just like my normal "old self".

    The best was from the 7th July or thereabouts, when I had three whole weeks of feeling okay!

    I relapsed every single time. This last relapse has been now for about 4-5 days or so. Again random, and I can't trace the trigger no matter what I do, even though I've kept detailed journals of what I've done physically, what's happened socially which may have been tiring, how I've slept, what I've eaten or drunk, and any herbal remedies.

    But I will tell you that I am not anything like a severe case. I am functional. I can do things. I just feel rotten sometimes nevertheless. And I have only felt "unwell" for 5 months which doesn't technically qualify (I don't think?) for a definite CFS diagnosis. Plus there are many many diagnostic tests I have not yet had and may even take me years to arrange under our healthcare system.
    By that time I am aware I will have got a bit of a reputation among my GP doctors, for being a "hypochondriac" ! LOL!

    I have no psych. issues history (No anxiety/depression.OCD or anything) I don't have health anxiety etc....

    The doc. of course says I check out 100% fine for everything, but I am waiting on a neurologist appointment next month for further investigation.

    So it seems to me random remissions are happening to ME anyway. I take nothing much except Echinacea sometimes (and I have to be careful with that) I tried Astragalus root tea. I have tried strong doses of vitamin B complex and vitamin C. All those things appear to boost me, then either stop helping or I will have a relapse anyway in spite of them.

    I find I have to be careful of the high dose vitamin B complex. It helps at first when a relapse is happening. Then I wonder if it's aggravating things. So I cut it to a lower "maintenance" dose which I always take anyway. But I think I am way off the mark with everything I try which I think is going to help. It is too random for that sort of logic.

    Sorry for the long disjointed slightly rambling post, but to get back to the point, -yes I have times when I feel just fine! It feels like some sort of "bad magic" when the initial symptoms return eventually even though I believed I was better!

    I wish there was just one treatment or supplement which would nuke this.
    For me anyway.
     
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  10. Judee

    Judee Senior Member

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  11. perrier

    perrier Senior Member

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    Were these people severely ill? Were they bed bound for years and years? This is critical. Some folks have the illness and function at lower rates. But what about those who have horrific crashes, and horrid PEM from minimal exertion, and those who are strapped to their rooms in their beds. And those who have been ill for decades? This would be interesting to know.
     
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  12. ljimbo423

    ljimbo423 Senior Member

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    I was actually 80-90% bedridden myself for several years and have been disabled with ME/CFS since 1989. I was in a constant flare of flu-like symptoms, exhaustion and pain.

    Almost anything I did would make my symptoms even worse. A shower seemed impossible, like thinking about climbing a mountain.

    Now I am able to go out walking for about a half mile 2-3 times a week and do 4-6 hours of physical activity every day. I am going to start lifting some very light weights either today or tomorrow and see how that goes.

    I made very tiny changes at first. I just slowly started to cut back on junk food like cookies and ice cream. I continued to very slowly improve my diet and experiment with different supplements over the years.

    It took years of research and trying different supplements but here I am and I continue to slowly improve.

    I know 2 of these people with ME/CFS were moderately ill and the third was at least moderate but might have been severe at one point.

    I think there is hope for everyone to, at the very least, improve their health. Based on my experience though, the more severe the person is the slower the changes need to be made, therefore the longer it will take.
     
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  13. rwinsmom528

    rwinsmom528

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    Perhaps since you are so early into this you may want to explore antivirals. At this early stage in the game they might keep you from getting worse. Dr. Daniel Dantini has a book/ebook on Amazon. I have forgotten the title, but it has the word Fibromyalgia in it.

    I started out with mono that lasted about a year, then I thought it had gone away- and stayed away for about 6 months. I resumed my normal life, then WHAM! I had a relapse and went straight to severe ME. I was severe for 5 years. I am fluctuating between housebound and bedbound right now.

    I didn't have the opportunity to try antivirals until I was already 13 years ill. They seem to be helping, but so much damage has already been done. Sometimes I wonder if things would have been different if my first Dr. actually believed that ME/CFS was a real illness and had directed me to someone who could really help me.

    Best wishes for finding something that will help you recover %100!
     
  14. perrier

    perrier Senior Member

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    Hello
    Why do you say damage was done? What damage do you mean?
     
  15. rwinsmom528

    rwinsmom528

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    Antivirals don't kill virus, they only prevent them from replicating. I believe that over the past 13 years the viruses have been replicating to their heart's content. All we can do with antivirals is to slow or stop the replication- it does nothing for the virus that is already there. My immune system has been so overwhelmed for so long it's broken. I don't know if it will ever be the same.

    I think that when my mono wouldn't go away in a timely manner, the Dr. should have prescribed antivirals. If she had, I think it's very possible that I would never have become severely ill and would have fully recovered. I don't believe full recovery is even remotely possible for me at this point.
     
    Judee likes this.
  16. Murph

    Murph :)

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    I'm friends with a woman who had more severe MECFS than I do (I'm only mild). She helped me find a doc and look into treatments.

    These days she is constantly posting long bike rides on facebook. She seems to be 100% better.

    People don't necessarily want to identify as having survived / recovered from something that was weird and not well understood in the first place. They just start living normally again.
     
    Hufsamor and Peter Pain like this.
  17. Murph

    Murph :)

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    There's a dynamic that makes recovered people leave sites like this. It doesn't happen every time, but often enough.

    1. They get better
    2. They allocate causation to something. (let's say diet changes.)
    3. Wanting to help the community, they start talking about and recommending diet changes. "This really works, you guys."
    4. Other users try the diet changes and it doesn't work.
    5. They continue to advocate for the benefit of those diet changes.
    6. Sick people finally tell them to stop bombarding threads with their supposed remedies.
    7. They get sore.
    8. Someone questions whether they ever had "real" ME/CFS in the first place. "lol. if it could be cured by a diet change, it wasn't me/cfs"
    8. The well person thinks, "screw those guys." and leaves in a huff.
     
  18. Jaybaigh5

    Jaybaigh5

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    Do you know what tx she did
     
  19. Wolfcub

    Wolfcub Senior Member

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    LOL! This kind of reminds me of myself a few weeks back now, when my second intensive course of my beloved Echinacea Angustifolia tincture, plus Astragalus root, plus high dose vitamin B & C suddenly made me feel miles better.....(for a few days)
    I was tempted to tell everyone about this wonderful cure! ha bloody ha. Just some sensible.... sensibly cynical voice said to me over my shoulder "Are you sure you want to make an ass of yourself? Give it a month and see what happens..."

    Two (or whatever) days later I relapsed and was mighty glad I didn't tell everyone this was the ultimate cure.

     
  20. Murph

    Murph :)

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    Her big thing was diet changes. cut out fodmaps and avoided other things. Also various supplements but I'm not sure which.
     

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