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Have you ever gotten better from CFS then relapsed?

Posted , 4 users are following.

imsolost
imsolost

I finished one of my "last" semesters in December, My doctor had me on zoloft for the daily panic attacks I was having (failed 2 of 4 classes) I was on disabilitiies with the college but they still didn't accept my late work. (can't graduate now till later, and my doctor believed stress from school made my CFS a lot worse.) Right after college I stopped taking zoloft and have not had a panic attack in 3 months, I  started doing really well in January, bed by 10 awake by 8 no more of the crazy 3am get up at 11am for college. I was actually jogging and sprinting outside while playing outdoor sports (airsoft every weekened) for 5 hours a day. I didn't have the "leaky lungs like someone poked a hole in me shortness of breathe. Nor the my spine feels like its snaping in half.

Exercies like weights made it worse like it always did but not abs, push ups and tricep exercies still triggered the symtoms so I never did those(still my believe something is wrong with my spine, doctor saw my chriopractor xrays and said I have slight scoliosis. This was from years ago before I even had CFS and he belives its not related.) 

It started up again in Feburary lightly and I reduced my acticties to more mild(not carrying as much gear in Airsoft. I actutally had my 15lb rifle and 20lb vest a few times playing and held up well. Later once I got sick again I started going light and not pushing myself by using lighter gear.

Then just the past week it triggered again because I was raking the yard (twisting of the spine?????)  and doing a bunch of yard work every day for several hours, bending over etc..

I don't think I could lift a 15lb rifle now it just feels like the weight of the world, just flexing my arm feels so weird like my heart wants to give out sometimes when the symptoms are bad. It was bad this week really bad, the empty heart feeling, no pulse feeling, racing heart feeling, insominia. But its not as bad as it was in the past and I recover faster, no longer the 1-8 hours of pain I used to be in. Sometimes it goes by in 30 minutes or sometimes 3 hours. Not once have I been sick all winter so I still believe I have CFS. 

Has anyone else relapsed like this? This is my 2nd time in two years and it always seems to happen in the winter when its not hot outside. Is it posible CFS is connected to weather? 

1 like, 12 replies

12 Replies

  • jackie00198
    jackie00198 imsolost

    Posted

    Yes, I've relapsed when pushing myself. My last relapse was 2 years ago, when I went on a vacation. I'd gone on exactly the same vacation three times before--no problem. It sounds from your post like you're engaging in a very high level of physical activity for someone with ME/CFS. Jogging and sprinting while playing outdoor sports for 5 hours a day?!!! That would tire even the healthiest person. You don't want to have my experience, which is I'm still suffering from my relapse 2 years later. I think you should cut way back on your activities. Yes, the ME/CFS virus is probably still in your system. Take it easy and pace yourself.
    • jeremy04366
      jeremy04366 jackie00198

      Posted

      I know this is an older post but there is no virus in most people with me/CFS. It's usually a complex metabolic disorder and the majority of patients do not test positive for a particular virus.

    • jackie00198
      jackie00198 jeremy04366

      Posted

      My doctor thinks there is a virus that is in the brain tissue rather than in the blood. 
    • jeremy04366
      jeremy04366 jackie00198

      Posted

      I was diagnosed at Mayo clinic. They say there's a malfunction in the metabolic system and communication in the body and some times inflammatory cytokines are released though they are undetectable in inflammation tests

    • jackie00198
      jackie00198 jeremy04366

      Posted

      Interesting. I do think it's disappointing that an institution as well respected as Mayo is still recommending Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) on their website. These therapies are recommended by the PACE trial, which has been pretty much debunked by the medical community.

    • jeremy04366
      jeremy04366 jackie00198

      Posted

      The Mayo clinic was the biggest disappointment I've ever had. They paid no attention to me at all. They just recommended a three week rehab program and told me that should fix it. I'll never waste my time going there again

    • jackie00198
      jackie00198 jeremy04366

      Posted

      I think the problem is that the Mayo Clinic is not involved in the latest ME/CFS research. You have to go elsewhere if you want to try some cutting-edge therapies. These therapies seem to work for subsets of patients. Stanford, and Dr. Jose Montoya's team, are doing a lot of research, and experimenting with anti-virals, like Valcyte. 

    • jeremy04366
      jeremy04366 jackie00198

      Posted

      I agree, unfortunately I can't get recommendations or referrals to anywhere. The places I have called such as Vanderbilt, UAB, and several other special clinics will not see me. It's sad really, I can't even get a doctor to help me with sleep medication

  • Bunnyhugger
    Bunnyhugger imsolost

    Posted

    Yes, these things are called "flares".  I was very depressed when I got my first one because I was doing so well.  It's not good to push yourself while you're recovering.  You have to scale back your physical activity and build it back up gradually.
  • Retriever
    Retriever imsolost

    Posted

    I recognise a major relapse from 20yrs ago. but my family has said I have had short relapses in between. Mr daughter says it seems about every four or five years  I seem to go down again. At the moment I am in relapse after a virus at Christmas. I did walk my dog for an hour on Sunday, bad decision I hit rock bottom Monday/Tuesday, Lifting isn't my problem its the afters. pain and cold muscles.
    • imsolost
      imsolost Retriever

      Posted

      Sounds like fibromyalgia. I have been doing better but its really weird how it affects me. I just got a job a month ago and I am doing fine, but if I bend down at work or lift heavy objects on my shoulder I get very sick, not to the point how I was almost bed ridden last year. I notice if I drink surgar drink or food I feel better. It's like its draining my body from the inside out. Yesterday I was out in the hot sun (84f) and it drained me but I was okay after resting at home. Today I work up at 7am had a strong internal urge to pee but I didn't feel it like normal person would. ( I have had these episodes before but they are rarer) it completly drained me like I was awake all night holding my pee in. I just slept in till 12 and now I am okay, still tried somewhat but I am working today and moving around okay.
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