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CFS/ME symptoms, but my doctor keeps telling me that it's nothing

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scryfox
scryfox

Since June 2014 I've been feeling constantly tired (i.e. the kind of tired you get whilst you have a cold, not the kind of tired you get at the end of a long day that wears off in the morning). I decided not to go to the Drs until August, as I wanted to see if the symptoms would go away. When I went to the doctors, he sent me for blood tests for EVERYTHING (apparently). I went back for the results and he said I could have waited for them, but I wanted answers so I went as soon as I knew they'd be back. They were normal. He read in my file that I suffer from anxiety (due to a combination of, at the time, lack of a job and some childhood issues) and he referred me to councilling, which I was already undergoing at the time. Councilling has helped with my anxiety, but it in no way relates to how I feel physically.

So I decided to do some research- and I stumbled across M.E. It was like someone had written exactly how I felt on a webpage and it was creepy yet somewhat soothing, in a way. I decided to go to another Dr, who gave me iron supplements (idk why) and then told to go back if nothing changed and he'd refer me to a neurologist. After 2 months of taking the iron tablets, all that'd changed was that everything tasted like metal. When I went back, his response was that it was lifestyle related (I mentioned that I hadn't slept very well on the iron tablets, as for some reason they made me stay up until 3-4am) and that I need to sort out a sleep schedule.

I'm at the end of my tether. This is my body, I know something is wrong, but my Dr refuses to see it! 

(ME symptoms I've experienced include: persistent exhaustion, recurrent sore throat, aching muscles/joints, poor ciculation, unrefreshing sleep, brain fog and increased sweating. I took the whole list with me to my first Drs appointment)

Any suggestions are greatley appreciated.

1 like, 12 replies

12 Replies

  • andrew22534
    andrew22534 scryfox

    Posted

    Hi, not being unhelpful honest but.. try and go for a second opinion... get another doctors advice, or go in with the ME leafletes / information, their webiste is quite good, and ask to be referred to your local ME / CFS clinic for assesment. it does read like ME so....
    • scryfox
      scryfox andrew22534

      Posted

      I'll give it a go, may get a 3rd opinion from a nicer Dr who actually knows me better. I might just go in and get them to refer me, if that's even a possibility.
  • bob1970
    bob1970 scryfox

    Posted

    Do you get PEM (Post Exertional Malaise)? This is one of the big ones with regards to determining if you have ME or not.

    Whether your Dr understands or not there really isn't an awful lot they can do for you if you have ME. Check out the Action for ME website or more info.

    If you get a diagnosis or feel it is ME, my advice would be to look at your diet and lifestyle and adjust accordingly to give your body the best chance of recovery. Cutting out caffine, alchohol and sugar has helped me. For me rest has been the most important thing and anxiety and worry is a real killer. You need to get those under control if possible. I find Mindfulness meditation helps.

    • andrew22534
      andrew22534 bob1970

      Posted

      I found mindfullnes a good help as to the rest i am on a good diet (honest!) i now have a planned day based on a 3 hour rotation, 1 hour activity 1 hour passive (desk) activity 1 hour rest at least i am stable ish now PEM is a killer usually the day after the day after, but often on the day you get "lactic" burn much ealier than you sould or should expect. Stress is a real problem and it seems easier to get stressed under ME... good points Bob.
    • bob1970
      bob1970 andrew22534

      Posted

      Yes whatever controls emotion, adrenalin, stress and the like just doesn't work properly. Strong emotions and stress, even good ones, worsen my symptoms more than physical activity.
    • scryfox
      scryfox bob1970

      Posted

      I've started off by easing off of sugar a little recently, which has helped with the sleep (I only wake up max 2 times a night, before it'd be up to 8) but I still get major brain fog. Also I think I get PEM, as currently I'm still achy & tired from something I did 3 days ago (I was crouched on my floor building a PC, on a day of low tiredness) and the day after my body just didn't want to do anything other than hurt/ be tired.
  • sylvia17461
    sylvia17461 scryfox

    Posted

    Hmmm ! Here's my two pence worth again ! I know from bitter experience when a GP or doctor tells you he has had blood tests done on every thing it means he probably has not and only asked for the ones he thinks might be causing your symptoms!!! It has taken years for me to find out I had not been tested for every thing. I was labeled with CFS as an exclusion diagnosis but  there were illnesses  that had not been tested which I have only recently been told about . My latest doctor said he had gone through al my medical records and could not believe I had not been tested for this illness with my symptoms it should have been high on the list. My advice , check with your doctor which diseases have been tested  that could be connected to your symptoms , preferably not the doctor you're  dealing with I ve seen a few of them in my time who try to convince you you're depressed or anxious or its all in your head . I may be wrong in your case but worth a punt if it saves others years of misery trying to cope with an awful dibillitating illness good luck 
    • scryfox
      scryfox sylvia17461

      Posted

      Thanks for the advice, I hope the third Dr's a charm 
  • georgeGG
    georgeGG scryfox

    Posted

    Hi Scryfox,

    Decades ago I went to my GP with chronic fatigue. At first it was a 'space age virus' = 'I haven't a clue'. I was referred to a lung clinic and found to have Sarcoidois. It wasn't the cause of the fatigue and the treatment with steroids was a ten year disaster. Once I left the doctors alone and turned to self help I gradually recovered. I changed my environment. I carefully tested every item of food and drink for tolerance. I carefully avoided exertion. Very slowly I made progress. 

    Self help, a committed partner is hugely helpful. is probably by far the best. Use the medics to rule out any diagnosable problems. That is the least the NHS should do. Try to avoid ineffective and over treatment. I took ten years to learn that lesson. Ten years of misery and lost life.

    (I have posted a fuller account twice in the other discussions on this group).

  • thegeeky1
    thegeeky1 scryfox

    Posted

    Hi,

    I can totally sympathise with you as your first paragraph could have been me talking! I have suffered with anxiety since I was 12 years old, and sadly this was always used as a 'fallback' by my doctor. My symptoms of CFS started about 5 years ago. Only on Friday did I recieve an official title to my condition.

    I changed doctors last year, mine wasn't getting me anywhere, he literally just kept testing for anaemia and low blood sugar then sending me away again. I am very lucky that my new doctor is incredible. From the moment I walked i nthe door she has been nothihng but supportive and motivated to help me. I have spent a year havng various tests (every blood test available, MRI, CT, EEG, ECG, X-rays, Neuro exam, cardiac work ups) just to rule everything out. Now that I am sighned off from the hospital she has diagnosed me with Chronic Fatigue Syndrome.

    I have been referred to the ME clinic, am receiving B12 injections to see if they can help and am seeing my doctor once a month for follow ups.

    I would seriously advise changing your doctro, and when you do ask to change as to speak to the practice manager. Then ask them which doctor would be best for you as you strongly fee you have ME/CFS. They should hopefully refer you to the one with the best knowledge of the conditions.

    All I can say from my experience is keep persisting, and keep changing doctors until you get one who listens. Good luck smile 

    • georgeGG
      georgeGG thegeeky1

      Posted

      It is important to have a listening doctor. That is always true but absolutely essential for CFS/ME. Also be very attentive to your own case. You will need to observe and assess the smallest changes.
  • sylvia17461
    sylvia17461 scryfox

    Posted

    It's been a while just wondering how you're doing any change in your symptoms did you check out the thyroid tests ? Me/CFS and thyroid very much the same symptoms hope you are feeling better than 3 months ago sy 

     

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