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chronic fatigue help needed

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janniekay
janniekay

do i have ME i have gone around in a circle for 2 and a half years . I have Hashimotoes and hypothyroide. I kept putting my symptoms down to my thyroide and hashi. but it seems i may have ME also .i have 9 symptoms out the 10 listed . I have fatigue ,sore face ,hand and leg tremours,shouting pain in my head ,sore throats,breathlesness , brain fog ,moody ,ringing in my ears ,sometimes a bit disorientated .i have no life ,i work and sleep and work and sleep .i do nothing on weekends apart from rest.If i was to go out shopping i would be exhausted the day after. I ahve been to the doctors today and she said go and google symptoms and let me know what you think.should they be helping me and telling me whats wrong with me.

0 likes, 13 replies

13 Replies

  • jackie00198
    jackie00198 janniekay

    Posted

    I assume you've already had bloodwork that's come back normal. If you, your symptoms sound very much like ME/CFS. Get to a specialist. In the meantime, the "work" part of your daily life might be too much for you. You need to pace yourself and get plenty of rest, or your symptoms can worsen.
    • janniekay
      janniekay jackie00198

      Posted

      Hi, thank you for your reply. what blood work should be done and what specailaist should i ask to see . My doctor said yesterday -there is not test to see if you have it and i cant send you to see anyone. I just thought you dont care.Ive beeing going for 2 and a half years thinking it was all down to thyroide etc but im not getting better.This is why she said go and google this and another disease and let me know what you think.I have no life apart from work and rest and im sure they must think i make it up as to being so tired all the time as when i say im tired i get the same reaction -so am i and i know how you feel ---- well i get angry and think no you have no idea.
    • Sassylass
      Sassylass janniekay

      Posted

      janniekay,

      No doctor should respond "I'm tired too" to someone with debilitating fatigue. And I have to wonder if you are getting the proper treatment for your Hashimotos disease? Blood levels checked regularly? Have you tried more than one type of thyroid replacement medication? I am assuming that you are on thyroid replacement....I am no expert at all, I've just recently been researching Hashimotos as a possible cause of my own Chronic Fatigue. I'm particularly sorry to hear that you have been diagnosed with Hashis but are not feeling better despite treatment. I do think that you should request copies of the results of all of your lab tests, etc. And if you do not feel you are being treated with compassion, as well as with expertise, then find another doctor if you are able to switch. I would really pursue the Hashimotos first and make sure that you are getting the very best care possible for your condition. I'm hoping to hear more about how things progress for you. Keep trying to get answers, but do not let the search become all consuming! It can do that to you and is almost as hard on you as the disease can be. So every day make sure to find something positive to smile about.

  • caitlin39841
    caitlin39841 janniekay

    Posted

    hi janniekay. gosh it sounds ur having a really rough time @ the moment. for the ME/CFS diagnosism, do have a read of the a few of the diagnosic criteria for ME/CFS. the 'Fuduka' is, still used i think. and there's always the NICE guidelined. you will have to have quite a blood work to exclude any other conditiions. i't s a disease of elimination.

    In recent years there have been the American Center for Disease Control (CDC) definition, the “Oxford Criteria” and more recently the “Canadian Guidelines”. Although the first two criteria tend to be used as a diagnostic aid by many clinicians, they were compiled primarily for researchers to identify particular sets of people for their studies. These earlier definitions (of “CFS” as opposed to “ME”) give various physical and neurological symptoms; however, in these definitions, the cardinal features of “ME” – the muscle fatigability and pain, and post-exertional malaise – do not have to be present for such a diagnosis. This suggests that nowadays, not everyone with a diagnosis of “Chronic Fatigue Syndrome” necessarily has the disease “ME” as described by Dr Ramsay. It also seems that CFS can cover a spectrum of fatigue-prominent diseases, possibly including illness based in depression, stress or ‘burn-out’. However the Canadian Guidelines were developed with clinicians more in mind.

    Two other features of ME are first the fluctuation of symptoms from day to day, or within the day; and secondly the tendency for the condition to persist for several

    Caitlin

    • janniekay
      janniekay caitlin39841

      Posted

      thank you for your reply.i think i fluctuate over time but in the mean time i constantely rest ,i got to work -nap when i get in ,go to bed as if im 8 years old - bed by 8 or 9 .weekend i rest then go back to work on monday .if i was to go shopping on a weekend or anything i would not be well later that day or the next.If i travel i am normally really ill as this totally drains me.what do i do ?
  • bronwyn97278
    bronwyn97278 janniekay

    Posted

    Hi janniekay....it's a Shame your GP didn't do the "googling".....she may have saved you some time and started treating your symptoms.....after reading your symptoms, I would be looking at Fibromyalgia or Polymyalgia with ?GCA......I don't think it's only CFS/ME.....the pain that you are describing sound more than CFS...(and CFS symptoms are very similar to Hashimotos')......if nothing shows up on tests, then ask for a referral to a Rhuematologist......will be waiting for your results/reply.......Bron
    • janniekay
      janniekay bronwyn97278

      Posted

      thank you ,my other doctor is sending me back to thyroide specialist and his reply was - if thats all ok then i think you have anxiety ? . I'm getting really cross becasue I love my job but i get run down very quick and end up feeling like im moaning at work all the time about not being well.I dont got out because the next day i'm ILL ,the same with shopping trip .I do seem to have months of not feeling great to then terrible -i think i may have had two weeks of feeling well .My doctor said theres not test-cant send you anywhere and its not treated.
    • janniekay
      janniekay

      Posted

      also wheni say pain i dont mean ache i mean a shooting/stabbing  pain very quick.when I first had all this I had shooting pains in the front of my throat like pins being stabed in all very quick but this was when the hasimotoes was attacking my thyroide and distroying it . I do get this a bit now but always think it the hasimotoes flairing up.When i get the stabbing in my head that again is a very quick sharp pain. I do get aches in my knee and lower legs .sometime  as if ive been sat on them and they have gone dead, or throbbing all i can say is a strange ssensation .my hand are as if i have a tuning fork in them -vibrations. when you replied what does GCA mean . thanks .Do you think i have ME and something eles as well as my hashi and hypo.
    • bronwyn97278
      bronwyn97278 janniekay

      Posted

      Morning; "anxiety" is often given to many, as you will hear from many others, and Yes we do have anxiety...but for different reasons to what "they" think...we are anxious because we Know there is something Wrong with us......all of what you say rings a bell with many of us too, re the Extreme fatigue after going anywhere (shopping is the hardest for me...I'm not sure if it's the aircondtioning, as when I'm in an air-conditioned environment,is when I become Very weak in the legs/body etc.....but not so bad if out in the open).....I agree with Inot, try another GP if possible in your area.....and a referral to a Rhuematologist will shorten your time of being diagnosed......do go onto the Symptoms Checker, print it off/write down the symptoms that you do have, and take this list with you to your new GP/ Rhuemy, and let them do all the tests necessary to rule out other conditions, and then get your diagnosis....in the meantime.....try some other pain-relief...not necessarily something extra strong, but I find that Amitriptyptilline is good, Gabapentin if you think it is "sharp knife-like pain", which could be nerves (both of the above are needed for nerve pain)...there are many, but with your list of symptoms, your doctors can find the appropriate ones to suit your symptoms..........................................but first you will probably need to have a lot of testing to rule out other conditions (if you have had recent tests done, get copies of the results and take them with you to your new doctors, that will save having to have same done again)

      As for PMR and GCA, they have similar body pains, but the GCA is Giant Cell Arterites....this can be detected by having a small artery tested.. (this I mentioned because you said you had Sharp pains...if these are in your head, near eyes/temporal area...it needs to be checked).....keep helping  yourself, doing lots of research (as it is important for us to look after ourselves), and let us know how you get on with finding that new doctor/s, and what they say...........Bron

  • end
    end janniekay

    Posted

    Hi,

    I read your post with alot of interest because of the cross over in symptons relating to endocrine/thyroid conditions and ME.

    Its incredibly frustrating to spend months running into years having tests trying to get to the bottom of things.This happened to me.

    Initially my own google investigations kept coming up with hyperthyroid, Hashi. Neurologists (initially under Neuro) wouldn't listen and so it went on. Eventually I changed my gp to a  gp who  listened to me and re head/thyroid mri'd. They found a micro pituitary adenoma (Endo says non problamatic) and atrophied thyroid (litterally half). I also had a dangerously low adrenal blood test (ok since).

    I am since  diagnosed with ME and I still feel and read that many professionals deem a possible endocrine crossover within the condition. Could it be the long term effects on the body from Endo problems I wonder?

    Once diagnosed I was seen by the ME Specialist. Agreed I suffered ME symptons but as soon as they knew there were Endocrine conditions they said I am over and above their criteria and basically binned me..

    My ME has rendered me unable to work and restricted by poor mobility.

    There still isn't enough known about ME. Roll on the day there is.

    The Consultants  tend to just say 'oh that's ME' even pre checking why I am there. Strange as often they ask what it is first....there lies my case!!!

    Just my experience, I am sorry it's not likely to be helpful to you.

    Make sure you have a good gp and if not change. You shouldn't be told to self google but then I did which went onto finding my thyroid and pit adenoma. Sadly not helped me in the findings.

    I have accepted ME, self help by pacing as much as pos but importantly my gp still runs tests accordingly.

    Can you define to your Endo/gp  exactly what symptoms are not associated with Hyp and Hashi and go from there? (you probably already have).

    It's so frustrating and stressfullhitting medical brick walls and if ME certainly hinders.

    xx

    • Sassylass
      Sassylass end

      Posted

      Inot,

      What treatments have you had for the atrophied thyroid? And they say a pituitary adenoma would not be a factor in any of the problems you are having? Will it be re examined regularly? If you are on thyroid replacement, could you say what type? And I'm curious, ME specialist says they can't help because you you also have endocrine condition? Is that correct? Please forgive all of the questions but I am in the process after 20 years of CFS, of trying to get answers. I am in the USA and think we've spoken before. I guess i need to look into the new terms and criteria,for what I know as CFS. Now known as ME or by some as SEID? So What advice exactly does an ME specialist offer their patients once they have been diagnosed?

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