Anyone have short term partial recoveries from CFS?

Discussion in 'Fibromyalgia Main Forum' started by 57Wagon, Oct 30, 2005.

  1. 57Wagon

    57Wagon New Member

    I'm new to this board and after reading some of the posts I'm glad to see that some of the symptoms that I have are common and I'm not crazy after all. LOL

    The question that I have is has anyone here had short term partial recovery from CFS. In the middle of July I started feeling a lot better after I stopped taking antidepressants. I was still tired but didn't need very many naps, my memory got better and no brain fog. I even started to consider trying to work part time.

    Then September came and I started to walk my son to school and then I crashed, now I sleep most of the day, memory gone and brain fog is back. I stopped walking my son to school Sept 19, I'm pretty sure walking triggered the crash.

    I hope to at least get back to the way I felt in the summer
  2. bubblesgirl

    bubblesgirl New Member

    Hello

    Yes I have short term recoveries,aren't they great when they happen. I feel on top of the world and ready to kick my shoes off with the rest!!

    The problem for me is when I hit bottom again. I try to steady my approach to life now and try to enjoy myself but consider the cost of feeling so awful. I now roughly how much I can do in any one day or over a week/ weekend and try and pace myself. I keep a record mentally of what I have done and learnt to be forceful and say no to others.
    If they grumble that I am a party-pooper so be it. They don't have to pay for it I do.
    My true friends don't push me and are my biggest allies.

    Never look back,look forward that way you will not be disappointed and remember the things you have done in the past can't be taken away from you, but the things you still want to do, can.

    There are other things you can do with your son that will give him so much pleasure and that 1:1 time he will treasure, no matter what age he is.

    Take care of yourself

    Sandy
  3. piebear

    piebear New Member

    Hi! I'm still new myself so welcome!
    I'm glad you posted that question cause I was wondering the same thing. I don't have CFS but I do have Fibro and the last couple of weeks I feel like I'm having a partial recovery. I was just diagnosed about a month ago and was put on an antidepressant and boom my symptoms seemed to improve. I'm wondering how long this will last though. I feel so silly that I don't feel that sick right now. I mean I still do have some problems but they are manageable. I'm thankful but I'm wondering how long this will last so I'm afraid to do too much. Its also hard to train your mind to deal with something this unpredictable. One minute I'm sick, the next minute I almost feel normal. I just don't know how to cope with that.
    [This Message was Edited on 10/30/2005]
    [This Message was Edited on 10/30/2005]
  4. 57Wagon

    57Wagon New Member

    Thanks for the replies
    I also feel ok for a short period of time usually in the morning or after a nap. It is really weird, when I feel good I have a hard time remembering that I was ever sick and then it hits me like a brick wall, I'm on my back again having a hard time remembering what it feels like to be well.

    I'm guessing that if I can learn my limits and what triggers my crashes this DD will be easier to live with. At least that is my hope for now other than hoping for a full recovery someday.
  5. jaltair

    jaltair New Member

    I have a friend who has been in "remission" for at least 8 years now. That's hopeful!

    I have had periods where I do feel good, what you might call a "partial" recovery. However, the bad times come back like all at once! I can go to bed thinking that I had a "good day", and the next morning hardly be able to get out of bed.

    I've learned to just accept and take the days as they come, just hoping to be able to get through until I can retire with at least the minimum of benefit!

    Take care. You will enjoy this Board. Come back frequently to check in. Lots to learn at this site!

    Warm wishes, Jeannette
  6. rebeccavw

    rebeccavw New Member

    Yes it is the nature of the illness. Sometimes if i am very good at pacing and not at work i can get back to 80% normal but then if i do too much I can be in bed for days. Its all about really strict pacing. Along with eating well supplements ect. I am the same though as soon as I start to feel well I go and do loads of thing but pay for it later. Try and start gradually doing a little bit every day.

    Anti depressants always make my symptoms worse but everyone is different.

    Rebecca x
  7. Rosiebud

    Rosiebud New Member

    then a relapse would come along. I would get so upset because I'd be thinking of getting back to work, getting my life back etc., just like you then wham, wipe out.

    It took me a long time to realise what was going on, this was 12 years ago and there wasnt a lot of info around on CFS then.

    I know this is the nature of the beast now. This year I have had a really bad time and I'm beginning to pick up now, I dont know how long it will last, could be weeks, could be months.

    I do know that it's only a short-term release and I have to make the most of it, but not overdo things because I have extra energy.

    You'll get back to the way you were in summer, 57, just take it easy when you do.

    love
    Rosie
  8. SoxFan

    SoxFan New Member

    This illness waxes and wanes. Last year, before I was diagnosed and didn't know as much about CFIDS, I really thought I was "cured". My symptoms had all but disappeared in January and February '05. I remember going to see my doctor, and declaring that I probably wouldn't need to see her anymore. Then the symptoms came back. Now at least I know that this is to be expected.
  9. 57Wagon

    57Wagon New Member

    I've had a couple of these short term recoveries over the past year. I would get really optimistic that I was getting better and then I would go to my doctor and employer and ask if I could try working part time because I thought I was on the road to recovery. I would usually crash within a week or two after that, I guess I better learn to keep my mouth shut when these short term recoveries happen. I can only imagine what my employer thinks of me.

    I remember thinking during these short term recoveries that I had this DD beat and I could easily work part time and have a some what normal life, boy was I wrong.

    I have so much to learn about this DD, but this board is going to help a lot. Thanks
  10. zerped

    zerped New Member

    I was beginning to be affected by CFIDS in summer of '01. Two weeks after 9/11 I went on my first vacation in years (that tells us something already, doesn't it?). I spent a week in Mazatlan, and I didn't do 90% of what I had planned on doing. mostly I sat in a big antique rocker on the porch of the hotel, sipping Coke and watching the ocean, the people and the cars going by.

    Six months later, I went back and was a little more active. As soon as I got off the plane in L.A. to transfer, I felt MUCH better; it was like the disease was gone. After I was diagnosed in '02, I went one more time, and it was like the scene in the movie "Cocoon" where the old people come out of the pool where the "pods" are. I still had to watch myself, but it was SOOO much better there.

    I've spent the last two years trying to duplicate the conditions of those visits. I ate REALLY well, and had almost no wheat for a week. I didn't really have my regular "sweet tooth." Where I am now (Portland, Oregon) it's wet, cold and windy. I know that "dry," "warm," and "lots of sun" will cause my symptoms to all but disappear. A friend who is a chiropractor believes that the pains people have when the weather changes isn't so much a reaction to the new weather, but a reaction to the air pressure changing. In Mazatlan, the air pressure is the same year round; in Portland it changes daily.

    Sorry to go on so long. Feel free to ask questions, and treat yourself well.
  11. 57Wagon

    57Wagon New Member

    Hi Zerped I live about 300 miles north of you. I used to go to the Portland car swap meet every April until I got too sick to go. The swap meet was usually very wet and windy, but if it wasn't raining it was hot. LOL

    I used to really enjoy visiting your fine city.
  12. PITATOO

    PITATOO Member

    I was diagnosed with FMS and CFIDS. I am 80% better 80% of the time. I work full time +. I am a published author. I work part time/weekends at an antique mall and do appraisals. Pretty active life, I workout with weights, still having problems with cardio, not getting enough oxygen(working on that). Things do get better. I am no longer taking anti-depressants, re-duced my pain killers by more than 1/2. I still have bad days and my mornings are pretty bad and late evenings. I can't always do want I want and if I do I pay for it; but seem to bounce back pretty good. When this first hit me I was 31 and thought I was dying. I was bedridden for almost two months down to 160 lbs. I am a 6' 3 1/2 " man, large frame. I am now up to 240 was 260 but lost a few.

    I can understand about the walking. Like I said I can lift weights but the treadmill really sends me in a tailspin. My oxygen sat rate is only 92-93. Any lower and I'd be on oxygen and was for a while. Working on ways to better that, I have never smoked and don't understand it.

    I am in now way "superman" but to feel this much better makes me feel like it. I crahsed last night after watching my 3 yo g-daughter for the day. I was whipped and did not sleep well so today is kinda rough. But I'm ok.

    Hope this helps you. You can get better. Just keep reading the site and researching on what to do for "you". Good luck and God Bless - Fibro Hugs - Bobby
  13. dancingstar

    dancingstar New Member

    57wagon - Yes, I have really pretty much recovered from CFS since I stopped taking Effexor. There are still times that I crash and don't have as much energy as I would like, but it's nothing in any way like when I needed to sleep 16 to 20 hours a day.

    For quite a long time I had trouble with aerobic exercise, something that I used to do all the time. I'm convinced that Effexor damaged my heart and mitochondria to some degree. I was reading something that led me to the idea that ribrose could help me; so I decided to give it a try, and it's really helped. You can take it before or after exercise, and it seems to help so that my muscles don't hurt as badly after I work out or the next day, and I don't get as tired after either.


    There is a ribrose protocol that involves a few other things including acetyl l-carnitine, alpha lipoic acid, magnesium, and I think something else...but I was taking all of that stuff anyway; so I don't remember exactly which things you are supposed to take with it. Adding in the ribrose really helped me. Just a thought.
  14. SoxFan

    SoxFan New Member

    How long did it take you to get significantly better? What would you say helped your way to recovery?

    - Susan
  15. 57Wagon

    57Wagon New Member

    I'm supposed to start getting B-12 injection tomorrow, start off at 1000mg a week and working my way up to 4000mg a week. I was told it has a 30% success rate.
  16. dancingstar

    dancingstar New Member

    It's tough for me to answer this question because I'm always searching for answers myself. My chronic fatigue syndrome healed basically when I stopped taking Effexor, and it was also helped by the Armour thyroid that my internist has had me on for quite some time now.

    I have not done well with vigorous exercise since I stopped taking Effexor, though, and am in a great deal of pain the next day...until I started using ribrose, but I also take a ton of other supplements and also still find myself in a tremendous amount of pain a lot of the time, but my energy level has begun to really stabilize, and I don't have the rebound pain after exercise anymore.

    Yesterday for the first time I found out that sugar substitutes, like equal and splenda can also cause a lot of the pain problems that we have, and I use tons of splenda and have for the entire time that I have had fibro. I stopped using it yesterday as soon as I began to read about this. Knowing how sensitive I am to some chemicals, I wouldn't be the least bit surprised if I've been poisoning myself the whole time without knowing it. Feel pretty stupid about that. Besides that, I take good care of my health and seem shockingly healthy for someone so sick. That's another reason why I kind of why I think it's poison.

    If anyone is using these artificial sweeteners, I don't think that they can rule out the possibility that it is causing their problems. It makes sense in so many ways, including the fact that more women than men have these problems, and more women than men use a lot of Splenda and Equal.

    If you didn't see yesterday's posts, you also easily do a search on the internet, and it brings up tons of information on the subject. It would be amazing if this were the answer to so many of our problems when we can't find another answer, wouldn't it?
  17. LISALOO

    LISALOO New Member

    Congrats, I hope to get there some day.

    After how long were you sick did you feel like you started to turn a corner? I read that if you're not better after a year there's no chance. But I feel there's been exceptions! Would like to have some for hope. 80% sounds wonderful!
  18. SoxFan

    SoxFan New Member

    I'm also interested to know how long it took before you began feeling better....
  19. Frecker777

    Frecker777 New Member

    I had a partial recovery about three years ago when a doctor gave me antibiotics for some unrelated manner. I took the abx for two weeks and miraculously almost all of my symptoms disappeared…dizziness, fatigue, anxiety, low bp—all gone! The good feeling continued for about a month and slowly disappeared over the next two. Only after a major crash 3 months later did my docs finally decide to look for some bacteria.

    Needless to say, yesterday, three years later, I was diagnosed with lyme disease—so we shall see how treatment goes.
    -Carrie
  20. SoxFan

    SoxFan New Member

    Were you previously diagnosed with either CFS or FMS? Had you previously been tested for Lyme?