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Headaches

Posted , 8 users are following.

heather39822
heather39822

I am quite desperate over my headaches. As I write I have a heated pad round my neck, as i feel that is where they emanate from, while lying under a fan in 31-degree heat.

I am on the slow pred reduction - moving really slowly and now going from 7 1/2 to 6mg while taking seven weeks to complete the reduction - after PMR diagnosis 16 months ago when I was started on 40mgs. Heaches have plagued me always, but never like this year when no medication makes any difference. Fearing a brain tumour, I have had referrals for MRIs of my brain and neck. The first was clear, the second showed age related wear and tear.

I have had deep rock heat massages of my neck, which initially helped but no longer make any difference. I go to yoga classes where I gently exercise my neck. Actually while doing the class, I seldom have a headache. I come home and it's back.

Do you think this is PMR related? Is it because of the pred reduction? I have struggled so hard to get my pred dosage down because of horrible side-effects, but even at 20 mgs a year ago I had the headaches so I am loath to increase the preds. On the days when I am on 71/2mgs there is no difference to my headaches from when on 6. Likewise when I was on 15 or 12 or 10 which suggests not related.

I am not sure if my general fatigue is PMR induced or just a side effect of the head and neck pain. Have hesitated to write this for months because I don't see how my whinging can help, but if any of you have advice or have dealt with similar problems I would love to hear from you.

1 like, 26 replies

26 Replies

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  • eddylynn36538
    eddylynn36538 heather39822

    Posted

    Hello, I'm new to this board but I have had PMR for 10 years, had a recent flare up and was referred to a PMR specialist who is managing my reduction in prednisone very slowly.  However, she has also diagnosed my with fibramyalgia and headaches is one symptom as well as total upper body ache for over 3 months. I haven't slept well for years and that is one thing she is trying to change. Lack of sleep causes so many problems.  I am just starting the fibramyalgia journey but can relate to all the problems on prednisone.  I was trying to go down too fast.
    • heather39822
      heather39822 eddylynn36538

      Posted

      Oh no...10 years and I'm only 18 months into it. Depressing. The Bowen therapist wondered if I had fibramyalgia - but know nothing about that condition and not sure how to go down the route of finding out. Will suggest it to my GP when I see her in a few weeks.
    • EileenH
      EileenH heather39822

      Posted

      Fibromyalgia is a problem with the brain processing pain signals. If your pain responded to a moderate dose of pred it wouldn't have been fibro as it doesn't respond to pred at all. It also doesn't produce raised inflammatory markers.
  • eddylynn36538
    eddylynn36538 heather39822

    Posted

    Dont mean to frighten you...most of the 10 years were good on a 10mg dose, with only a few flare ups. Sometimes down to 5 mg and sometimes up to 12.5  Although I gained 40 lbs due to the original high doses, I did slowly but surely lose it and led a very active life.  It is just this past summer I had a flare up and the increased prednisone 20mg)  was not controlling it that they did much more testing.  It was all the other symptoms I had been having since June that led to the diagnosis of fibro.  And to top it all off, another large weight gain from the increased pred.  My rheumi has me going off very slowly  by 2 1/2 grams one day a  week.  I.E.   Takes 7 weeks to go from 15 g to 12.5 then you start again by 2.5 to 10 (another 7 weeks) then she will decide if its by 1g in same manner.   Its a miracle drug when youre in pain but sure not fun getting off it.   E
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