Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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New to forum,, would like advice

Discussion in 'General ME/CFS Discussion' started by Darran321, Feb 19, 2016.

  1. Darran321

    Darran321

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    Hi Everyone.
    Ten months ago I recall coming down with a severe cough infection which was a surprise because I haven't had a cough for around 30 years.
    At the time I was under a lot of stress at work, was often feeling low and irritable. My main hobbies are running, cycling and weight training, which I continued to do through this turbulent time, my cough manifested into fever, headaches, neck gland pain, ear ache and strange smelling sensation which is hard to explain, along with fatigue.
    Over the last ten months I have had two lots of blood test which all came back fine, and tested for lymes disease which was also fine. The only medication I have being prescribed is blood pressure tablets because of high blood pressure and 20mg citalopram for my low mood.
    Ten months on I still have severe head pain , ear ache, and pain in my neck glands, all my symptoms are from the neck up, I have no pain below my neck, only deep breathing and meditation seems to relief my pain.My symptoms do increase if I try any exercise which gives me and impression its ME, my doctor informs me he thinks it's ME, I have been off work for 4 months, I feel let down by my doctor and don't know we're to turn, finally since having the above mentioned symptoms I have not had any cold, cough or any other infection, any advise would be pleasantly accepted.
     
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  2. Skippa

    Skippa Anti-BS

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    All I can say is... this sounds like many a classic tale of how ME/CFS started for folks...

    Since you were at a high activity level, you'll have to reign that in, perhaps drop from running to walking... Yeah I know it sucks but you risk getting stuck ill if you overdo it.
     
  3. Mij

    Mij Senior Member

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  4. *GG*

    *GG* Senior Member

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    Concord, NH
    @Darran321 My first advice would be to break up that block of text, to make it easier to read, you will likely get even more feedback then :)

    GG
     
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  5. Jeckylberry

    Jeckylberry Senior Member

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    Welcome to the forum! I wouldn't be too disappointed with your doctor. Just the fact he knows what ME is and doesn't tell you to get over it or do exercises shows he has worth. It is hard to treat and will involve a lot of experimenting. As @Mij asked, did they test for mononucleosis/ Epstein Barr Virus (EBV)/ Glandular fever? Although this involves the liver and spleen it sometimes goes unnoticed in the light of the horrible throat and gland issues. Even mild cases have been known to throw people into CFS/ ME. Good luck!
     
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  6. CantThink

    CantThink Senior Member

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    Hi & welcome!

    So does the rest of your body from shoulders down feel normal?

    If you do day to day stuff in your home, how do you feel?

    Are you sleeping well, too much, or too little?
     
  7. outofstep

    outofstep

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    You should look at the laundry list of Citalopram side-effects because they sound like ME. I would look at the side-effects of your meds before settling for an ME diagnosis.
     
  8. Darran321

    Darran321

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    Hi mij
    Thanks for replying what's mono
    Hi thanks for replying
    Yes I sleep very well, 10 hrs I have never had and pain from below my neck
    I can do everything apart from exercise,, then symptoms start to manifest
     
  9. justy

    justy Donate Advocate Demonstrate

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    Hi Darran, I wonder if you had a dose of Chlamydia Pneumoniae - it can cause a very low grade pneumonia type illness in people and then goes on to wreak havoc in the body. It is well recognised by ME experts to be a possible trigger for ME.

    No idea if you can get tested for it over here (I presume you are UK based?) You could get some private testing through Armin labs for EBV (glandular fever or mono) and Cpn, and a different Lyme test (the NHS one is notoriously unreliable, lots of false negatives).

    Failing that you could try an ME specialist. Dr Myhill in the UK doesn't take new patients but her website is very helpful. Otherwise there is Dr De Meirleir in Belgium.
     
  10. CantThink

    CantThink Senior Member

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    So are you still having the generalised fatigue?

    Are you saying that if you didn't exercise, you'd be able to function normally such as go to work, cook, shop, clean etc?

    Your initial illness sounded somewhat like glandular fever/mono, which is why having an EBV test can be helpful. Perhaps I am barking up the wrong tree, but what you describe now seems to be like exercise intolerance. Exercise intolerance is a feature of a number of illnesses.

    If you only feel ill from exercise and not just normal exertion/activity then IMO that would be unusual for M.E..Typically the post exertional malaise (PEM) in M.E. arises from any exertion/activity, even reading/writing/talking on the telephone, as well as more obvious things like walking, sports, cooking, cleaning etc.

    Have you noticed any issues with heart rate of blood pressure?
     
  11. Darran321

    Darran321

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    Hi Justy
    Thanks for advice will no doubt look into it
    Darran
     
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  12. Darran321

    Darran321

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    Hi cantthink
    Yes I can cook shop walk and do all things apart from any type of exercise
    My symptoms are very very mild until exercise. I'm off work at moment in reference
    To blood pressure yes I'm on blood pressure tablets it has been quite high at worst
    174/95. Now 146/88
     
  13. CantThink

    CantThink Senior Member

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    Has your heart been checked out? They should probably check it given the issue with exercise and your HBP. A cardiologist would be the person to see for that.

    This is quite interesting given the neck up only symptoms combined with appearance after exercise:

    http://www.apexllc.org/articles/exertion-headaches/

    When we exercise I believe I read that the pressure in our head changes. I have Trigeminal Neuralgia and I once did some extremely (for me) strenuous activity in the evening. That night I woke up after little sleep, and I was in such severe pain... I had to get up and just pace around/watch TV as I couldn't bear it or lie down.

    A neurologist might be helpful in ruling out a lot of things like head issues and spine issues.
     
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