Is CFS degenerative

Discussion in 'Fibromyalgia Main Forum' started by MaxPB, Jan 25, 2013.

  1. MaxPB

    MaxPB New Member

    Hi folks

    To those who ahve lived with CFS for a while, would you say it is a condition that systematically worsens over time, or can one manage the condition to remain at current levels of function or even to improve?

    Have you done any tests to see if significant organs/body systems hae deterirorated in funciton over time due to this illnes?
  2. IanH

    IanH Active Member

    Regarding me (ME/FM 16 years) and my family (3 others, over 6 years), we have all improved significantly.

    Of others I know of:
    Out of 15 people who have had ME/CFS (some with FM) for between 3 and 20 years: 6 have improved enough to return to part time work, 5 have not changed and 4 have clearly worsened. Those who have worsened have all had ME/CFS for over 10 years. However the worsening of function is not caused by your typical ME/CFS symptoms. OA is a common feature in all 4 who worsened. I suspect that other pathologies are made worse by ME/CFS. So I cannot say that the ME/CFS or FM is worsened.

    Another comment I would make is that those 5 who had not improved or worsened had during their period with the disease have had very serious deteriorations followed by remissions.

    I would also say that those with FM (but more limited ME/CFS) have worsened the most or at least report that they have not improved. Also, separate from the above 15 are 3 with MCS (for 4 to 9 years), who have all improved.
    [This Message was Edited on 01/25/2013]
  3. TeaBisqit

    TeaBisqit Member

    Well, I've had it for 22 years. I went through a few years where I was better. Then it declined. And now I'm worse. I'm alot worse. I think it's different for everyone.