1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

CFS Diagnosis

Posted , 4 users are following.

sam42589
sam42589

Hi all, 

I have been suffering on and off with mild symptoms that sound similar to CFS and my GP has referred me to a specialist in the disease. I have taken a diary of the last three years and I have had bouts of 'flu-like' illnesses throughout, (around 30% of the time). Sometimes it will be a week or so of just a weird tiredness feeling, other times I'll need to be in bed to rest it off.

I recently had a run of around 5 months of being symptom free but recently caught a cold/flu and it has come back strong. I am getting headaches which is new. In the past it's just been random crashes of energy and flu-like symptoms that last from 3 - 10 days. so to round up my symptoms are: 

1) Mild headaches that come and go at the back of my head 

2) Mild nausea but never being sick 

3) Flu-like tiredness, crushing fatigue bouts that usually only last a few hours. 

4) Bad days and good days, some days I feel like I am 100% but most days I am running at 50% energy levels. 

All of my NHS blood tests have been at healthy levels (Thyroid, Glandular fever, white blood cells, red blood cells, iron etc.).

I don't have any muscle pain and I usually sleep absolutely fine, though anxiety about my illness is affecting me somewhat. I don't know if I experience brain fog but I am able to work at full capacity. 

Any thoughts/tips would be greatly appreciated. 

 

 

0 likes, 4 replies

4 Replies

  • wknight
    wknight sam42589

    Posted

    Sounds a bit like me, except the bouts of fatigue lasted a bit longer. Never had headaches or nashua, just crushing tiredness when I wasn't tired. After 8 years of battling the condition, I embraced it, learnt to live with it, by pacing and 2 years on, I almost live a normal life. It wasn't until I accepted my condition and how I had to change my life to get better that I felt there was a light at the end of the tunnel. 

    I went to see a specialist and had CFS confirmed but to be honest there is little they can do for you as there is no pill for the cure. For me graded exercise therapy which i did myself worked and now I can cycle 50 miles. There were lots of ups and downs but I am so pleased I came out the other side. Best of luck.

    • sam42589
      sam42589 wknight

      Posted

      Thanks for the reply. It sounds like the symptoms differ from person to person with this condition which is why I am a bit confused by the whole thing. I guess I'll have to take what the specialist says as a diagnosis. Did your specialist do further blood tests?

      I also don't experience 'pay back' in terms of feeling drained after doing lots of exercise. When I am experiencing a crash I just don't do any exercise!   

      Really glad to hear you are recovered, I am sure I will get there too - just having a rough 3 months which is worrying! 

       

    • paddiwhack
      paddiwhack wknight

      Posted

      Hi how do you begin graded exercise. I really struggle. Sometimes only up 6-7 hrs a day and always tired. Achieve a lot less than I want to and walking just burns my keg muscles feeling like a horse has kicked me. I’d be really interested. Wishing you well. TIA. X
  • wknight
    wknight sam42589

    Posted

    What I did first was to find the level of activity that I could do without any adverse affect. Now that is very hard because you want to keep doing things and you have to say NO. I tried for 8 years to fight it and got no where. Now everyone is different, my GP recommended 30mins rest followed by some activity followed by another 30mins complete rest, flat on the floor, doing nothing. 

    I built up from there and then started indoor cycling, just spinning the wheels at first for a minute, the 2 etc. Every day was a careful balance of how much I could do. Its akin to teaching your body to run a marathon, except you can't walk yet. Its a very,very slow process after about 6 months or so, I could cycle for 30mins. So I went out on the road, for 20 mins, that put me in bed for 2 days. So back to the drawing board and couple of months later I tried again, but 15 mins outside and I was ok. 

    Its very,very hard to restrict what you do. I live on my own and friends don't get it. I would say NO at very short notice if I felt I couldn't do it and people got annoyed but I had to manage my energy levels. My GP called it boom and bust. 

    My target for miles last year was 50 and I did it a couple of times and can cycle 30 miles easily now. I still manage my energy and if I think I may be doing too much I take it easy as I am on a long stretch without a relapse and I want to keep it that way 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.