Reply to Staceymarie, Dara, Hippen and Donegal + tips for

Discussion in 'Fibromyalgia Main Forum' started by kooky, Jul 6, 2003.

  1. kooky

    kooky New Member

    Thanks for comforting messages! I felt freaked out and isolated. It is after reading about others's sufferings that makes me realise that there are so many of us out there.

    There is an excellent book which I keep with me at all times. It is called 'Chronic Fatigue Syndrome - A Treatment Guide' by Eric F Verrillo and Lauren M Gellman. It explains all the symptoms in details.

    To Stacemarie:
    Concerning the oesaphagus tightness (I had this for months and months two years ago), they advise a muscle relaxant and avoid carbonated drinks, acid foods, foods that are too hot or too cold or any other food which could cause esophageal spasms. Sudden changes in temparature eg. hot shower, can trigger this. Emotional stress can exacerbate this problem. Calming tea such as skullcap or valeriam can be used. Recommends drinking 2 oz of warm water mixed with 1 teaspoon of appled cider vinegar.

    Dara: yes, I do have tachycardia almost daily but not panic attacks. They occur spontaneously up to 150 bpm (rarely 200), after eating, or minimal exertion. I cannot take any medication although I was offered propanolol (beta blockers) because I have allergies and am very sensitive to medications. I have tried accupuncture for these. I also use an accupressure point inside the arm, and it seems to keeps the palps from going further than 120 bpm but it could be just a coincidence.

    Hippen and Donegal: agreed about lack of oxygen, whether from pulmonary/respirator problems or the heart. I do take my BP daily. It fluctuates from 97 to 108/70. Suddenly shoots up 180/90 or shoots down to about 80/60! Previously to falling ill (end 96) BP was 120/70. Oh well, that seems a long time away.

    The book I mentioned in the 2nd para is truly excellent. It describes the symptoms very accurately. Unfortunatley, I can relate to all of them, because I have all of them all at once but with varying degree of severity. The only symptom I cannot remember being mentioned is generalised pain to the point when even a strand of hair on the cheek becomes unbearably painful.... Otherwise, it has certainly helped to know that these symptoms we are experiencing are indeed medical and no, we are not imagining them. Also, the tips and medication advised either allopathic and alternative are excellent.

    I suppose that living on my own does freak me out when the nastier symptoms appear. It is too easy to imagine the worse...... This message board is simply wonderful as support network. Many thanks. Kooky.

  2. Dara

    Dara New Member

    had a tilt table test? The way you said your blood pressure fluctuates it sounds that maybe it could be from neurally mediated hypotension. At least, I think that's the way you spell it! What it is, is when you are in a standing position your blood pressure drops considerably, if that is the case there are medications and other things they can do to correct it. Just thought you might want to look into this.

  3. kooky

    kooky New Member

    Hi Dara: good idea. I have written to my GP once more. If she does not contact me within a week, I will find another physician. Will mention the test you suggested.

    Spoke to another CFS sufferer this pm. She gave me the name of her doctor. Although she said she was put on a waiting list for a year, it was well worth the wait. Her physician is understanding and helpful. Will contact the surgery tomorrow and see if I can be put on their list. Should I be put on a waiting list, I shall stay with the GP I have at present and grit my teeth *&%"!!

    Hope you are keeping well and feeling fine today. It is such a bore being homebound/bedbound. I suppose the positive aspect of this illness is that it has taught me to lay back and enjoy the little things in life......
  4. Dara

    Dara New Member

    Well I'm glad you got the name of a good doctor to go to, hopefully you won't have to wait that long to see him/her though.

    I know it's hard being housebound, thankfully I have good days when I can go outside and do things. Problem is, on good days I tend to overdue and then pay for it later. You'd think I'd learn by now...