Strange Problem - I would like some input and hugs

Posted , 11 users are following.

Okay, I have a strange problem.  Approximately 4 weeks ago, I started working from home with fewer hours per day.  Once I started doing this, I let down all my barriers to pain, etc, and allowed myself to truly relax.  For the first time in years, I feel better.  My blood pressure is down, even.  This part is wonderful.  But here is the weird part.  Now that I am relaxed, I feel pretty good when I am resting; however, if I do anything, my symptoms seem worse.  I get sick sooner, get nausea faster, dizzy sooner, all the symptoms that we all know and love.  I am hoping that now that I have relaxed and stopped pushing myself so hard . . . well, no, I don't understand.  Why would my symptoms get worse if now I am relaxed and resting and doing all the other stuff I'm supposed to be doing.  I am a bit frightened that I am getting worse.  But how would taking care of myself, make my symptoms worse?  Does anybody have any ideas?  Suggestions?  Has this happened to anyone else?  I would appreciate any help in this.  Thanks!

1 like, 19 replies

19 Replies

  • Posted

    Hi, I think this is the problem with cfs, it's hard to tell at the time if you are overdoing it! I felt great after an all inclusive holiday last august but by December I was off sick again and worse. I am trying now to pace myself but it is so tempting to do that bit more when you feel better. You must resist. All the guidance says only increase 10% at a time and do that until you are really comfortable with it x
    • Posted

      I agree with Tea belly. it may well be that now you are relaxed your body is indicating the maximum effort at which improvement is reduced to zero. Keep below that and improvement may be slowly achieved. It may be worth a careful test. Not overdoing it is a very common essential to recovery.

      I have found it a lifetime discipline . Although I consider myself recovered I still find I can over do it and pay with 2-3 days of being flat physically and mentally.

  • Posted

    cfs the more u do the more it kicks in . with making u sleeppy .

    there is ltd what u can do ,

    blood pressure is down see doctor mine stays same ,

    there are books for less thn £3 on eb site . for basics .

  • Posted

    Hi Ravenwood,

    I too have the same problem. I have just resigned from my job because of fibromyalgia cognitive difficulties and fatigue and now I'm at home relaxing my symptoms seem to be getting worse. The nausea is unbearable and cognitively I'm a wreck...

    Maybe it's because we have more time to think about our symptoms and we tend to thrive on stress to keep us going...?

    I'm due to see my doctor next week for some answers so watch this space.....

    • Posted

      l think there is an elament of when your forcing yourself to go out, also the fresh air, pushes you on. Inside you,ve comfort and warmth to relax in you feel symptoms more, think we also have delayed responses to the body,s exertions.  l,m wondering stephanie what level your nausea is, l know a few people get it, in degree,s, lve had day after day from waking to bedtime, can go on weeks, lose appetite

      with it, worse on exertion, meaning doing jobs l0min at a time and then sitting for half hour to settle it, takes an age to do anything, so debilitating and l can sleep 1-2hrs on sofa daytime, yet also bored rigid, at times l,d describe it as unbearable, miserable, infuriating, lve been put on ppi,s for gastritus, not helped much. l also have i.c.intersticial cystitus, luckily not fibromyalgia with it, as many with ic do have. Some days l feel a wreck, and look it, today not a bad day so a big help to go out and enjoy it, as opposed to enduring. Someone on gastric site adviced cod oil vit e cabbag juice for nausea, already tried chemist stuff and ginger, nux, so will give others a try. But had began to wonder if anyone has nausea from waking to bedtime daily for weeks, lost appetite and weight, can you let me know how persistent your nausea is, presumably bad when described unbearable, will look in on what your doc says, l dont think mine understand just how bad it is.  Good luck

    • Posted

      Thank you for your reply...

      I have nausea from the moment I wake to bedtime. I don't enjoy food anymore not even my favourite chocolate. It's like going through the first stage of pregnancy on a permanent basis! (But I'm not pregnant...)

      I wish I was losing weight but I'm not, but I guess that's because of inactivity due to fibromyalgia..?

    • Posted

      l know, the persistent nausea is horrible, and l,m off most foods l ate before, now small plain snacks, but l think about an eighth of quantity of before, but also due to less activity its taken months to lose half stone, and l was 2 stone oweight before, about the only pos is the weight loss when wanted. Hope your doc can help, l,ll look out for post and info.
    • Posted

      I agree I thrive on stress.  Maybe that is the problem.  I did over do a bit yesterday, and today I'm wrecked.  But, it now seems that less activity, less everything causes more/stronger symptoms.  I'm now dwelling on being sick or anything.  Although, now that I am not forcing myself through life everyday, I am more aware of my body and what it wants.  Maybe it is taking avantage of me? rolleyes  I don't know. 
  • Posted

    there is a problem know as weekend sickness - migraines sort of colds sore throats etc, also holiday sickness- same things... its because you have relaxed and are no longer fighting the stresses of life or driving yourself. your body has a new baseline you now have to work out how to manage this new level and plan a new work rota for yourself to manage this and improve... you will be better for it in the end but will take learning about the new you... be prepared to learn and pay attention to yourself but it will be a better life just needs a bit of planning... exciting times ahead  
    • Posted

      I used to get weekend sickness when I was working full time.  By the weekend, I was so tired that often I slept most of the weekend.  I do like feeling better when I am taking is very slow.  But, I don't like how quickly I now can over-do.  I didn't have this problem 4 weeks ago.  Yesterday, I went to the library and when I was done, I had absolutely no energy.  And today is worse.  I feel sick.  Stomach hurts, head hurts, etc.  A couple of months ago, I could have gone to the library, went back to work and then crashed on the weekends.  Sigh.  I know you are right.  I just have to get used to the new me.  I see the doc tomorrow.  Maybe, he'll have something interesting to say.  Thanks!
    • Posted

      remember to ask the right questions, take a notebook - i do, and good luck, be positive its your life, live it as best you can but learn how to.... i am still learning, and trying... it will improve, just not yet...
  • Posted

    doctor ho,e ones are ltd with the cfs . i went hospital and was up on cfs but the brain fog kicked in on the 1st visit . lucky i got a 2nd visit and the wife got me to write down the questions . the hospital hightlight the problems and buy a book or 10 over cfs which paid £50+ for the insight to it . which as helped with it .

    there is less cfs but the levels get better and knock down come and go . with been down sleeppy .

  • Posted

    The only thing I can think of is your body is finally releasing all of its stress. I say this because I am studying osteopathy at the moment at uni and it is an intense course however, when I stop for half term breaks etc I seem to get worse but I think it's where my body can finally relax it all rushes out? Sorry if that makes no sense I just don't know how to describe it haha!


  • Posted

    I see you grappling with something that we're probably all dealing with, more or less: the loss of control. You're doing everything right, like relaxing, yet your symptoms get worse if your try to do anything. I'm having the same problem. One of the huge hallmarks of this disease is the very thing you describe--postexertional fatigue (or malaise, though I hate that word). In other words, symptoms worsening after the slightest exertion. I'm actually even having difficulty with fatigue etc. after talking, especially talking on the phone. I rest, I meditate, eat right, have a pretty good attitude, have a loving husband, see a very knowledgeable doctor, yet here I am. I was always someone who took control and was very goal oriented and energetic. I'd had a great job for 20 years that I had to give up. So I guess what I'm saying is that you're not alone and what you're experiencing is typical for this illness. Hang in there.
    • Posted

      Thanks, Jackie, I appreciate it.  This was really bothering me.

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