neophyte32
Senior Member (Voting Rights)
What are the symptoms when u are in PEM ? U are bedridden or exhausted but still functionnal ?
What proportion of people with ME/CFS who become severe or very severe do so within the first three months? Did you?
- Thread starter Jonathan Edwards
- Start date
What are the symptoms when u are in PEM ? U are bedridden or exhausted but still functionnal ?
Mij
Senior Member (Voting Rights)
-Sudden viral vestibular onset 1991. Was still able to attend school and exercise. Had mild sore throat and ear. Didn't have PEM or delayed PEM.
-Six months later- 'extremely elevated anti-thyroid antibodies".
-Felt almost recovered 9 months later from PVFS, but relapsed badly after returning to work 4 weeks later.
-Did aggressive rest therapy for 5.5 years and felt almost recovered again. but started exercising and experiencing PEM and delayed PEM for the first time.
-Took immune modulators in 2001 and had major relapse that reactivated EBV and HHV6. Recovered after 2.5 months and started running again.
-all that changed my baseline and I developed OI.
-Six months later- 'extremely elevated anti-thyroid antibodies".
-Felt almost recovered 9 months later from PVFS, but relapsed badly after returning to work 4 weeks later.
-Did aggressive rest therapy for 5.5 years and felt almost recovered again. but started exercising and experiencing PEM and delayed PEM for the first time.
-Took immune modulators in 2001 and had major relapse that reactivated EBV and HHV6. Recovered after 2.5 months and started running again.
-all that changed my baseline and I developed OI.
BrightCandle
Senior Member (Voting Rights)
Mild to begin with, GET caused moderate condition about 2 years in and COVID infection made me very severe at 2.5 years.
After a very long prodrome/period of being "very mild," I declined over a few weeks to moderate, where I stayed for a year or so. About two months after diagnosis, in the midst of that decline to moderate, I had a crash that left me severe for about two weeks - this was actually the first time I had PEM significant enough that it forced me to confront that the diagnosis was real - but then I returned quite quickly to my sloping "baseline." There were a few more crashes knocking me into severe for a short spell over the next year, then slow improvement to somewhere fluctuating between mild and moderate most of the time, more or less up to the present day.
Varda
Senior Member (Voting Rights)
Mild/moderate for 11 years. I could work part time, cook, go shopping etc. I lived in constant PEM - exhausted, poisoned and fluey - but I didn’t understand I had ME/CFS and that it was dangerous to have PEM. I thought pushing myself would cure me.
One final crash caused me to become bedbound and severe overnight. I felt physically that something ”broke” in my body during that crash. Never recovered since.
One final crash caused me to become bedbound and severe overnight. I felt physically that something ”broke” in my body during that crash. Never recovered since.
RainbowCloud
Established Member (Voting Rights)
Virtually everyone has gotten progressively worse, which is heartbreaking but also interesting because I don’t feel that’s what’s reflected in most literature about ME.