Does this sound like CFS? — Scope | Disability forum
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Does this sound like CFS?

PenniePinkPJs Community member Posts: 1 Listener
Hi, I've joined to see if this sounds like CFS while I await my last set of blood tests. 

In 2016 I suddenly felt too tired to deal with stress and was in an abusive relationship. I've since got divorced and had a routine op to have my gall bladder removed. 

I thought the stress and the need for an op was the cause of my tiredness but the last 3 months I have got worse.

I have headaches, face pain, shoulder pain, aching hands, stiff hands, feel ill and have to lie down and am sleeping a lot more than I ever have. I just feel so tired and all my bloods have come back fine so far. Also, the pains in my hands seem to come and go through the day. Some days it hurts to hold a brush and driving makes my hands stiff. The pain is like sharp, shooting pain.

Also no pain anywhere else on my body, just upper body.

Does this sound at all familiar?


  • poppy123456
    poppy123456 Community member Posts: 49,807 Disability Gamechanger
    Unforunately, we are not medical professionals so we can't give you any medical advice. It's also against scope's rules for anyone to do that here.
    Hopefully, you will get some answers soon.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Aardvark
    Aardvark Community member Posts: 30 Courageous
    Hello Pennie

    I have ME/CFS and a few extras (the nhs NICE guidelines use the ME/CFS label rather than CFS but some medical folk stick with ME or CFS).   Its a diagnosis of exclusion if they rule everything out and you then fit they award the label.. its not really a label anyone wants. 

    Do keep going back to our GP and any specialists.  Make sure they know all your symptoms its ok to give them notes.  I drew a simple outline of human body and wrote /labelled eveything going on it helped my GP unpick things

    Have you read up on the charity pages the ME association and Actionforme are two charities that can help.  One of the keys is post exertional malaise... an exacerbation of all your symptoms following activit.. it may be delayed by 24-48 hours so hard to pinpoint.   Keeping a simple diary of symptoms and what you do can help.   

    I hope your medical team find answers for you soon.  

  • trig
    trig Community member Posts: 4 Listener
    Or though they say everyone experience it differently but there are similarities with in CFS. I have felt slightly more tired my hole life but in 2017/2018 I had a terrible time stress and worry my partner fell down our stairs sleep walking went from a £600 a week job suddenly not being able to work broken his back in 5 places and needed looking after I was an agency worker but  having over night reduction of 700 a week income loss was a shock. After a couple of months I needed to return to work taking on all sorts of jobs one harder then the last working 12 hour night shifts 7 days a week. After 12 months of that I started to ache and felt overwhelmingly fatigued all of a sudden I sleept first 33 hours in one go then it increase to 2/3 days barely managing to stay awake an hour a day but the fatigue just kept on knocking me for 6. Sadly in-between all of this my best friend died which I handled so badly eventually I saw my GP who explained that the trauma id been through had brought on CFS and fibro. I am predominantly bed bound can't do much myself anymore sleep 16 to 20 hours a day ache all over and nothing helps my doctor said the first few years of this are ment to be the worst but apparently it can get some what better more manageable with some flair ups but he's been saying this for last 5 years now. There are a lot of conditions that mimics CFS and for the first couple of years I had him sending me for test after test nothing conclusive become of it and I am so fed up with being prodded and poked now I have refused any more tests. I did find pain management clinic and some of there course helpful in dealing with this but do persist at least for a while to see if this is CFS or maybe something else that can be treated perhaps 


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