CFS setback?

Discussion in 'Fibromyalgia Main Forum' started by yellowbird, Jul 25, 2003.

  1. yellowbird

    yellowbird New Member

    Three weeks ago I was forced by circumstances to exercise outside my limits, ie. I had to walk a few blocks. Due to this, I've had a relapse and I don't seem to be pulling out of it at all. I can no longer get on the bus to meet friends at a café, visitors tire me out and I feel the need to lie down many times in the day. It's so discouraging. The only thing that seems to help is having a day of 'nothing': not going out, not seeing anyone, just total solitude and quiet. Trouble is, the 'nothing' days are having less and less of an effect, I'm waking up less and less refreshed after them.
    Scared I am in a permanent setback and may have lost a year's worth of progress... am I "horribilizing"?

  2. LeLeHpr

    LeLeHpr New Member

    Try not to get too discouraged as it is more than likely a temporary flare. Though they seem to last forever, the moment it ends, was liked it never occurred. Keep your head and get rested. Keep us posted on how you are doing!
  3. pegasis

    pegasis New Member

    Flair ups are going to happen. You didn't nessisarily do anything to set it off. They seem to come and go as they please. Are you on any pills at night to help you get into deep sleep? They have me on Remoron 30 mg at night. It is an anti-depressant wich is a big help with the depression that usually hitches a ride with the flair ups. Plus, it works as a sleep aid so I get into a deeper sleep at night so my body actually rests like it should. I have noticed that I have to take it about 1/2 an hour before bed and it really nocks me out. But, if needed, I can fight it to stay awake unlike regular sleeping pills. Then, I make sure that I can sleep for about 9 hours straight. You will need the extra hour of sleep to avoid feeling hung over the next day. At least I do. And yes, on this med, you really will sleep for 9 hours straight instead of the waking up repeatedly garbage that we have to deal with normally. Hope that this helps some. Will be keeping you in my prayers so hang in there. It WILL end eventually!!! Lots of love, gentle hugs, and God's greatest blessings for you!!! Melody (pegasis)_
  4. yellowbird

    yellowbird New Member

    Well, it's been six weeks now. I was feeling somewhat better for a bit, but have since slid back. Despite being very careful to rest, etc, I've woken up feeling worse than the day before for the last 5 days, for no discernable reason. I'm really wondering if I'll be getting back to 'normal' anytime soon at all...

    Thanks for listening,

  5. greeneyes24

    greeneyes24 New Member

    I was in remission from CFS for 3.5 years. I had smallish flareups that would last a week at most, but I was still able to function pretty well. Then I started working 12 hour days and doing postgraduate study at the same time. After 2 weeks of that I felt that I was doing too much and was starting to get my old CFS symptoms. However I thought it would pass after a week or I would get used to working so much. I kept at it for 2 months. I told myself I can stop at any time and rest for a few days and I'll be back to my old self. But I got worse and worse. When I was too weak to get out of bed I took a week off work thinking it will be more than enough to recover. Well guess what? It's been 3.5 months now and I'm still not one bit better. I'm worse in fact. First few weeks after I quit work I was still able to go shopping and have ocassional dinner with friends. Now I spend 80% of the time in bed and only get out of the house for doctors appoitments. I have no idea how long it will last. I'm really scared too that it will take me years to get back. I hope this hasn't been too depressing. It's just that with this DD you have to be really carefull. Sometimes when you seriously overdo it it's hard to go back to your previous state. Then again while in remission, I took a 6 weeks holiday traveling around Europe, barely slept was very active all the time and didn't have a relapse. I thought I was cured then.
    Anyway, try not to worry and I wish you speedy recovery.
  6. yellowbird

    yellowbird New Member

    I'm really sorry to hear about your relapse. Please take good care, and I hope you come out of it soon. At least you know you've gotten 'well' once, so odds are it will happen again. I was 'well' for all of 2001 and I hope to get back to that level of health again one day.
    They say that one of the keys to recovering from this illness is "lifestyle changes", but it seems to me sometimes that the kind of lifestyle my body is asking for is that of a depressed person living in their parents basement, or a prisioner in solitary confinement who never takes exercise breaks. I mean this humourously, in case it sounds odd.

    [This Message was Edited on 08/14/2003]
  7. greeneyes24

    greeneyes24 New Member

    My key to staying positive is knowing that I got better once, and I was very, very sick. While I was sick the first time I have never dreamed I would be able to do the things I did while in remission (like go to university full time, work, go dancing, go to the gym, traveling).
    So I know it's just a matter of time.
    I think the important thing for us to do is just relax and let go of inner tensions and frustrations. Fear and worry is not getting us anywhere. Some things we just have no control of and we should allow nature to take it's course.
    Accept what's happening as temrorary state. I watch videos, read when I can, basically try to get my mind of the illness. And when I'm having a particularly bad day, I know it will pass and I'll feel better again. I also realize that I may never be 100% well, but I will take 85% gladly (that's the level I was when in remission).