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Chronic fatigue syndrome diagnosis

Posted , 9 users are following.

nichola99319
nichola99319

i have been ill on and off now since I was 25 am now 37. I was always very active, but every few weeks I would get ill and felt run down. My GP fobbed me off, and I just put up with it. In the last 2 years it has got worse. I literally get ill every 2/3 weeks I feel fatigued, sore throat, headache, can get myalgia pains, spaced out, freezing, weak and shaky, sometimes feel sickly. Sleep does not help. I also have episode of crashing . This Saturday I woke up after doing yoga the day before and could not do anything, I was floored.

i have had every test under the sun, and I am currently under rheumatology as my bloods for immune system were low. I have chronic neck and hip pain. My recent blood for ebv were positive indicating some virus in the past.

i manage to work full time and I have 2 children, although I have been sent home on numerous occasions as I am not well. The doctors wonder if I have CFS.

i do struggle to concentrate and think clearly when am like this, I also have poor memory.

feeling fatigued can last anything from a days to weeks, especially if I have over exerted myself . If I go out for days out with kids, I am floored on way home and have to go bed. I can't drink alcohol nowadays too, and nights out resort in me having to leave early or go bed even when am feeling well them days.

the only thing is, when I am well I can do normal things, I have been great for 4 weeks recently and done yoga 2x week, walked dog for half an hour, gone horse riding once in the week. But then boom I wake up and am floored. This can happen every few weeks where am great for weeks, then fatigued for weeks

does anyone else have similar experiences

thanks for any advice.

2 likes, 50 replies

50 Replies

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  • david59662
    david59662 nichola99319

    Posted

    Hi Nichola, i am in a similar position, i have had CFS 18months after acute infection like onset. Make sure you get tested for lyme disease. Make sure you get Western Blot test on NHS as well as their standard ELISA.
    • nichola99319
      nichola99319 david59662

      Posted

      what's western blot and ELISA David? And thanks so much for replying , am feeling Frustrated at moment, not sure what I can and can't do as I am so used to being active, 
    • david59662
      david59662 nichola99319

      Posted

      It's the names of the different testing methods used to detect lyme disease in your blood, from what i read the tests are not a reliable as others, you may be lucky to ask your GP to trial you on doxycycline treatment for a few weeks to see if it helps. My GP did this for me as lyme disease is notoriously difficult to diagnose. I used to be a marathon runner and semi professional triathlete, i am 35, i'm housebound for large parts of the day, had to quit my job etc etc Every test i have had says normal, from NHS to private tests. Being so inactive is soul destroying for me.
  • Gregh286
    Gregh286 nichola99319

    Posted

    hi nicola,

    thats cfs patterns,  booms and busts. The overall feeling of a crash coming on...all too familiar.

    it brutal and horrible. 

    almost 2 years end and no end in sight

     

    • nichola99319
      nichola99319 Gregh286

      Posted

      fit thanks, I wondered if You had to be fatigued every single day to have CFS, didn't realise there were patterns to it, which definitely would fit in with how I am feeling. I have even done meditation, and though doing yoga a couple of time a week would help, which for 4 weeks I thought it had. How do you know what you can and can't do in terms of exercise when your feeling good?
    • nichola99319
      nichola99319

      Posted

      Grr sorry the text has jumbled up on my previous reply
    • GeorgiaS
      GeorgiaS nichola99319

      Posted

      I've had it for 10 years and it's changeable from day to day. Though I'm virtually bed ridden sometimes I can do a little bit and other days I can barely move. Plus the severity of ME varies from person to person. Some can work and some can't etc. It really is individual.
    • nichola99319
      nichola99319 GeorgiaS

      Posted

      Thanks Georgia it's very frustrating condition isn't it. Although am lucky really and should be thankful I can still work and do get good few weeks. I just need to get head around what can and can't do now as I make the mistake of over doing things when feel good then just crash. Am off sick this week as I crashed at weekend

      It's causing argument because am being told I am doing too much and I need stop. Scared of what I can n can't do now

    • GeorgiaS
      GeorgiaS nichola99319

      Posted

      I think that you have to listen to your body and if you need to rest or sleep do it. It is so frustrating I know! I used to be an outdoors running around type person who could never sit still for long but now all I can do is sit still.

      Don't burn yourself out even more because you have a great chance of recovery if you have a break. You don't want to end up like me.

  • wknight
    wknight nichola99319

    Posted

    Sounds a very similar experience. I too could work but wouls boom and bust and my consultant explained to me that not everyone is house bound and can do nothing as there are different levels of CFS. Google ME functional ability scale and you can see where you fit in.

    Until a year ago I was dreadful on boom and bust, but I took pacing seriously then, started very slowly and now I am doing far more than I have been able to for the last 5 years, so it is possible to improve so don't give up, just learn how much you can do and do no more. Then slowly increase it in very small increments and be patient.

    Its like trying to run a marathon, in the beginning you can't do anything, but with the right training you might be able to get there.

    • nichola99319
      nichola99319 wknight

      Posted

      Thank you so much, I did wonder if i Was over doing things when I felt good, and did not knOw about the patterns. I love my Yoga and only just started it and started a horse riding lesson each week. I have anxiety and it helps I really don't want to give it up, but wonder if this will have knock on effect now ekesekes
    • nichola99319
      nichola99319

      Posted

      the ME scale is very useful thanks you, it put it into perspective how variable it can be, thanks
    • wknight
      wknight nichola99319

      Posted

      If it helps I love cycling and have used it as part of my recovery process. I started with 5 mins indoors just spinning the wheels nothing hard. Then if that had no adverse effect, with me its usually a day later, I then moved up to 10 mins. again nothing hard, just getting the body use to it. Slowly I worked my way up to 15 min, 20 then 30mins. I sat around 30mins for ages and did the odd ride outside but that is much more stressful and uses more energy. Then again slowly started increasing it until I could manage an hour. The other day I did 20 miles I was so happy BUT I did nothing else for almost a week to give my body a chance to recover. If you look at my garmin stats you can see the very,very slow progression and you can also see the days when I don't have so much energy and when I do.

      Hope this helps. For me the key is exercise where I am in control and can stop when I want so I am not forced to do say an hour lesson because on some days that is just too much, but I may be ok to do that tomorrow.  I am off to do a few miles indoors as I gradually get back in to it after my epic ride. I use to be a 50 mile a day person.

  • david59662
    david59662 nichola99319

    Posted

    To get Western blot, most GP's will only do ELISA but they can give false negatives, show GP this document highlight the part where it says 'remarkably some immunoblots gave positives on samples tested negative by all eight ELISAS'. It worked for me, but i had negative test, but you might be lucky.

    http://www.ncbi.nlm.nih.gov/pubmed/21271270

  • olivetree
    olivetree nichola99319

    Posted

    Hi Nichola

    Your story sounds familiar, all up and down, on and off.  It makes it very difficult to know where you are or what to expect next. You think you are recovering and then wham. Here it comes again.  I also went on for many years like that before a diagnosis was made.  It does sound like you do have CFS and should ask your doctor to run all the tests to eliminate other possibilities if he hasn't already done so and then get him to refere you to a CFS specialist clinic for formal diagnosis and hopefully some advice about managing the condition. It sounds as though you do at least have him 'on board' with you so hopefully he will agree.

     

    • nichola99319
      nichola99319 olivetree

      Posted

      thanks for your reply, i am under the rheumatologist at moment, and he does think its ME, he just wanted to run few more tests first. My immune blood are low, i think this may be in keeping with ME. also i have has positive EBV blood test and  and another one i cant remember which are viral  triggers for ME.

      i think i have just put up with it for years, but its got worse these last few years, although i thnk in comparrison to others mine is quite mild, i can work (although get sent home fw times ).

      the things i read about made it sound as though you should be tred all the time with ME, so i had some doubts, but the responses i have had have been great, and helped me to see that there are patterns to ME.

      I just hope i get a final diagnosis so i can be signposted to the right people and learn how to manage it properly. I think i really need to learn how to pace myself, am rubbish at this, hence the crashes i have

    • david59662
      david59662 nichola99319

      Posted

      Nichola what other virus do you have ? You should ask your GP for a trial of valacyclovir. Works wonders for some chronically ill CFS folk that have positive EBV test.
    • nichola99319
      nichola99319 david59662

      Posted

      I have tested positive for the Epstein Barr virus and CMV in past but not currently present just shows that I have had past infection. I think ebv is closely linked with CFS too.
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