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How do you know when you're 'relapsing'?

Posted , 6 users are following.

Nacho
Nacho

I just wondered how you know when you're having a relapse of ME/CFS? I find it difficult to remember a time in the last 10 years when I didn't feel extremely fatigued and exhausted!! I suppose if I think hard, there have been times when I've had more energy, and I think my other symptoms have come on over time (memory loss, brain fog, pains etc.) but I've had this exhaustion for years. So what constitutes a 'relapse' and what costitutes a 'good spell'?

2 likes, 12 replies

12 Replies

  • david59662
    david59662 Nacho

    Posted

    Hi Nacho,

    Well for me 10 months into my CF, i've went from being able to walk AND jog for 30minutes 8 days ago to the past few days where i can barely walk 200 metres.

    The one constant is i always feel ill, especially when on the move. Sitting still like on the PC not so bad but when moving around i hate that feeling. Is this what others have ? And also did ll CFS/ME sufferers come into the disease with a viral assault ? I know i did. Thanks

  • KathS
    KathS Nacho

    Posted

    I've wondered that too as my fatigue is constant.  Relapses and 'good spells' don't seem to happen to me!  Every single day it's an effort to get up, dressed and move about!

    In my case, the pain came first.  I don't remember a significant viral infection, but can't rule it out.  The other symptoms came over time like yours and I now have most of the symptoms mentioned on the ME Association website.  The latest is a sore throat which I've now had continuously for five weeks without any sign of a cold etc.  It's only soothed when eating or drinking.  Nothing is swollen but the flesh is red at the very back behind the tonsils. Do you have this one?  It's one of the symptoms of ME/CFS surprisingly.

    Sat here using the iPad is about as much effort as I can summon at the moment but I do have a lot of work piling up which I need to do on my PC.  I am retired but do a lot of work on the computer for my church and Mothers' Union.

    Also like David59662, that horrible feeling when moving about doing ANYTHING is awful.  I liken it as similar to 'flu symptoms without it being 'flu.  My only 'sort of' comfortable position is sat on the settee watching TV, reading, using my iPad and sometimes knitting (although knitting makes my back and arms/shoulders ache quite quickly).  I feel like my life is slipping away too quickly as at 72 I should still have SOME energy to enjoy life.

    At least, knowing I'm not alone with this problem gives me some comfort that I'm not going mad or just being lazy, as some people think!  If only they knew what it's like.

    • david59662
      david59662 KathS

      Posted

      Hi Kathy ,

      You said- At least, knowing I'm not alone with this problem gives me some comfort that I'm not going mad or just being lazy, as some people think!  If only they knew what it's like.

      Yes if only they knew, friends and family, the GP. I'm 34 and concerend about my future but have to somehow remain positive that i will recover enough to live a normal'ish life. I think my triathlon days are behind me though. I often wonder how much of this 'is in my head' cos i hear that from people, i wake up in the morning in particular, holy crap, NONE of this is 'in my head', wish it was. Please look out for thee results of THE SYNERGY TRIAL Kathy. You can check it out on youtube. It's a trial in the U.S using nutrients and low dose ritlain to treat CFS. My Gp has agreed to support me doing this should the results be positive. We need ALL options open to us and remember people can and do fully recover from this, it just takes time.

  • jackie00198
    jackie00198 Nacho

    Posted

    Good question. I relapsed last September, and am still in relapse mode. In my case, I knew I relapsed when my existing symptoms intensified and I developed new ones. 
    • Nacho
      Nacho jackie00198

      Posted

      Jackie, how did you feel before your most recent relape? (If you can remember!!)
    • jackie00198
      jackie00198 Nacho

      Posted

      I felt fatigued, with postexertional fatigue, trouble sleeping, and difficulty sitting, standing, or walking for more than a few minutes. After relapse, in addition to existing symptoms, I developed new symptoms: tingling, heaviness, and some shooting pains in legs, and then in arms. Also, very severe postexertional fatigue. Now, even talking, especially on the phone, can cause this severe fatigue.
  • sylvia17461
    sylvia17461 Nacho

    Posted

    Hmm.!!! Did my illness start with a viral attack , yes lasted for weeks and weeks . Eventually it went but left me with a painful throat, jaw, ear and numbness in roof of mouth. 5 months on I suddenly lost my appetite completely never ate a single thing for 6 weeks and at the same time this happened I became very ill with so many awful things happening in my body.foggy brain , no concentration, numbness in arms and legs , thudding heart, palpitations,dizziness, pain in muscles and joints , tremors and worse still inner tremors , etc etc and of course dreadful fatigue !!!! Does this ring a bell with any one??? . I read a book which described almost to a t every thing that had happened to me from the viral infection to the loss of appetite and so forth !!!  It said this was due to a de, quervains thyroiditis, I showed this to the endocrinologist I had been seeing and he said it was complete rubbish although I had told him exactly what had happened to me 3weeks earlier before I had even seen the book!!! This was in 1996!!! I went down the thyroid route for the next few years and all the tests came back negative so I was told nothing wrong with it. Eventually I was "diagnosed" with CFS and told to just live with it . There are no tests for me/CFS so just a case of eliminating all other illnesses . There is more to my story but I won't bore you with it . My question is has any one on this page had a similar experience ?? 
    • jackie00198
      jackie00198 sylvia17461

      Posted

      If by similar experience, you mean viral onset, then severe fatigue and many physical symptoms, and doctor telling me it was all in my head--yep, that would be me.
    • david59662
      david59662 sylvia17461

      Posted

      Yes, similar to my own issue. Virus, just feeling very ill for the first time in my life, i remember having penetrating stiffness in both legs which lasted months and still think there is a residual effect or something. I wanted to ask you, are you WORSE in mornings ? I know i am, EVERY MORNING i wake up and think oh god, the after about an hour things get's a little easier.
    • fiona88737
      fiona88737 sylvia17461

      Posted

      Yes my experience exactly...i have only just had a diagnosis after 26 years - more complicated as i had a double transplant in between. always known something else was the matter. interested to hear about your experience with tremors as that is something new for me recently. in the middle of a nasty episode nowresulting in me only having the strength to speak into my microphone save using my hand i'm so tired..apologies forthe lousy translation!

    • sylvia17461
      sylvia17461 fiona88737

      Posted

      Dear me a double transplant with all this other stuff going on that's tough!! Every symptom started the same time the inner tremors have never gone away I am aware of them continuously like an electric current going  through my body from top of head to my feet with no relief, the book I mentioned earlier stated they are a direct effect of the thyroid on the nerves ?? It also said '. You come across as neurotic ' lol I have been shouted at called stupid told it is all in my head told I am depressed had doctor banging his fists on the desk at me   But up till now , never neurotic!!! If you go to "I AM HASHIMO DISEASE A LETTER" it might help you compare all of your symptoms I found this was me even tho I had been told in no uncertain terms I had CFS . This is when I insisted on checking it out and ultrasound proved it 19 years later . If I had known about hashimoto I could have saved my self a nightmare of a life possibly !!!! Good luck 
  • sylvia17461
    sylvia17461 Nacho

    Posted

    We all seem to be in the same boat , looking for answers . Yes waking in the morning and feeling soooh ill thinking how am I going to get through another day !!!! Even going to bed at night I had no relief as I lay awake listening to the pounding of my heart eventually I was prescribed amitrypiline , not a sleeping pill a sedative , wonderful! Now 19 years on I have been told we don't think you have CFS , after an ultrasound we believe you have an autoimmune disease !!! All the many many symptoms for me/CFS are more or less the same as hashimotos but because thyroid blood tests come back normal , it is dismissed out of hand!!! Mistakes are made by doctors , and endocrinologists seem to go by blood tests alone 
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