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What is the course of your ME/CFS?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by JaimeS, Nov 13, 2017.

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What is your ME/CFS course like? (Please answer only if you've been sick for 6-mo or more.)

  1. Relapsing-remitting (periods of better wellness and periods of worse wellness)

    24 vote(s)
    29.6%
  2. Secondary-progressive (relapsing-remitting, but general course of worsening)

    37 vote(s)
    45.7%
  3. Primary-progressive (gradually worsening with no relapsing-remitting pattern)

    14 vote(s)
    17.3%
  4. Progressive relapsing (occasional sharp drops in wellness that are permanent; no remitting phase)

    6 vote(s)
    7.4%
  1. MeSci

    MeSci Senior Member (Voting Rights)

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    We need to desensitise the immune system to good things so that it can deal with the bad things, don't we?

    And to stop overreacting to the good things.
     
    JaimeS likes this.
  2. Woolie

    Woolie Senior Member (Voting Rights)

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    But most of us are dealing with the bad things okay, I think. We're not getting repeated bacterial infections or anything else that might indicate our immune system is actually failing to protect us form new infections. At least not the majority of us (some might).
     
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  3. JaimeS

    JaimeS Established Member (Voting Rights)

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    Just goes to show how the disease shifts. :) If you'd have asked me a month ago, I'd have said the same.

    This is the first cold I've caught in 3 yrs, so my own system is normally pretty active, and immune supplements like Vit C are normally a disaster for me, increasing inflammation and giving me a fever. The only nod I give to supporting immune function is half a dose of Lactoferrin every night.

    That's probably why it took me so long to get over this: it runs counter to what I would normally do for myself. I finally realized I felt like I do when I forget to take my Lactoferrin. Took extra, waited; took Vit C, waited; etc. Within 24 hrs of immune support I was up and running again.

    BUT as always, we may be talking apples and oranges here, @Woolie. :)

    Regarding immune suppression, I'd also started to note some signs of fungal microbial invasion, showing lower immune function than my normal. I really haven't had issues with bacterial or viral infection, but I have had issues with fungal infection. The defenses involved are different enough, I suppose, to make that possible.

    There does seem to be a group of ME/CFSers that catch everything. But I agree it does seem they're in the minority. (Another poll?! lol)
     
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  4. Mij

    Mij Senior Member (Voting Rights)

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    The issue for me is that I don't know if I 'catch everything'. My immune system feels like it's always 'on'.
     
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  5. MeSci

    MeSci Senior Member (Voting Rights)

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    I had a major fungal infection in year 2 of my ME when I was in hospital after my overdose, due to either my tube line or whatever they gave me for an infection I got just as I was due to be transferred back to my local hospital.

    Sorry to be so vague - it seems clear enough in my head until I try to type it! Anyway, the fungal infection persisted after I got home. It's an infection that is common in hospitals now, and I can't think what it's called.
     
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  6. Anna Wood

    Anna Wood Established Member

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    It's really hard to pick from those categories.... I started off mild and for around 5 years was improving slowly (increaseing working hours from 9-3 to 9-4). Then I plateaued, then I had a major relapse leaving me housebound, then I slowly improved for a few years and now i've plateaued again (still housebound).
     
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  7. JaimeS

    JaimeS Established Member (Voting Rights)

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    Thrush? Cryptococcus?
     
  8. MeSci

    MeSci Senior Member (Voting Rights)

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    Possibly thrush? My memory is so hazy. I had a lot of infections in that area after such a large overdose and long-term tube feeding/medication.
     
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  9. meandthecat

    meandthecat Established Member

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    It hit me like a train and kept on going for around 3 yrs, bottomed out and stayed there for another couple of yrs then I began to improve slowly in fits and starts and sometimes hardly at all for another 3 or 4 yrs. Then it was like breaking the surface and I felt alive again. The first years were free of colds etc, when I had my first cold it scarcely started before it was gone. After year 6ish I got a real cold that lasted for months then I knew things were changing.
    The symptoms become life, does it ever really go away?
     

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