International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Burning in upper lungs.

Discussion in 'General ME/CFS Discussion' started by xak53, Mar 8, 2018.

  1. xak53

    xak53

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    Cornwall, UK.
    I have got the most uncomfortable fluctuating sensation in my lungs it is difficult to describe but it is like burning coal embers in my upper lungs causing at times profuse sweating at night only in the upper chest area. This has been going on for around 8 years since I contracted an enterovirus and M.E to follow. I have had 6 chest x-rays in that time and each one has shown nothing but interestingly enough the x-rays actually intensify the burning for around 3 months after each one. Also my heart beat becomes out of synchronization to the point that I feel that I may have a heart attack and extreme breathlessness and horrendous long lasting adrenaline rush that is very frightening. I also have multiple chemical and drug hypersensitivity along with many other common and complicated M.E symptoms. I have been prescribed liquid TEMAZEPAM 10 mg over 5 ml x 2 or 3 or 4 @ night (very toxic levels) as I am unable to sleep because unable to switch off my mind as it races through negative intrusive thoughts and I am now addicted to the drug which no longer works and unable to come off of it as I feel so zombified and ill with or without the drug and tapering seems an impossible quandary. I frequently romance with the idea of suicide as my life is so pointless and desperate for so many years. My M.E consultant who is very understanding but bound by the N.I.C.E guidelines (which I find are restrictive and somewhat untrue) has now offered me an M.R.I of chest and brain stem which I await appointment for. If anyone can relate to my story or has any potential solutions please reply.
     
  2. nanonug

    nanonug Senior Member

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    Virginia, USA
  3. xak53

    xak53

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    Cornwall, UK.
    I totally agree about Temazepam but what do you do if you simply cannot sleep and stay awake for days at a time making my M.E symptoms so much worse? And heart arrhythmias set off by massive unprovoked adrenal release is what I believe I have. My G.P is just to busy and generally not that interested in my illness and she is one of the better G.Ps around so it is very difficult to get any supportive help.
    And regarding Agomelatine with side effects like Abdominal pain; agitation; anxiety; backpain; constipation; diarrhoea; dizziness; drowsiness; fatigue; headache; increased serum transaminases; nausea; sleep disturbances; sweating; vomiting and suicide risk.
    Also bearing in mind that I have multiple chemical and drug hypersensitivity syndrome and extreme reactions to a long list of anti-depressants this drug would finish me off.
     
    Last edited: Mar 8, 2018
  4. Gingergrrl

    Gingergrrl Senior Member

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    @xak53 I read your symptoms and was wondering since your ME consultant is very understanding, would s/he be willing to order other tests that you request in addition to the MRI of chest and brain?

    Some that I was wondering about were:

    1) Spirometry or pulmonary function testing (PFT) of the lungs
    2) EKG, Holter Monitor or other tests of heart rhythm
    3) Echocardiogram to see image of heart
    4) Exercise Echo (only if this would not be dangerous for you)
    5) MCAS (mast cell) or other allergy testing for your multiple chemical and drug sensitivities... (but even without the testing, there are OTC meds/Histamine blockers you could try to see if it improves allergic reactions/sensitivities)
     

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