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Hopeful but very scared

Posted , 6 users are following.

marie09535
marie09535

Dear all,

I've been ill 19 years (since age 25) and was dignosed with ME/CFS many years ago. I am now 44 and living in Sweden.

Last summer I had a turn for the worse and together with everything else I could no longer stand for more than a few minutes at a time (weakness and pain). I decided to apply for disability (again). After a scare with a(nother) terrible GP (it's all in your head), I ended up two months ago with a young doctor who immediately said she thoght I had PMR and prescribed prednisone.

It has been a journey since. When I first read about PMR nothing fitted (I'm way too young, have (and have had) many more symptoms, lack some of the others) but as I have read more and followed this forum I have become more and more convinced it's really vasculitis: PMR and probably GCA/TA too. Suddenly everything is coming together. It's just such a relief to finally have been properly diagnosed with something that has a treatment.

Speaking of... I did not react to 30 mg/day but with 40 mg after three weeks it was like lifting a veil. Suddenly after almost 20 years I woke one morning rested. And I could think! I would get up in the morning and just LIVE a whole day. It was amazing for two weeks. And then it passed, and now I'm as bad as usual. I'm still better in some ways (mentally) and falling asleep lots faster, but I am ever so exhaused.

I have an appointment with a specialist next week, but I am so scared. I know it's irrational, but the fear that I will be met with contempt or mistrust is just overwhelming. I am so scared they will say they can't or won't help me. That my GP is wrong (as I do not fit the typical criteria) and that further investigation is useless and that they won't prescribe medication that could help.

It would be too much after having "tasted" health after so many years. It would be so cruel. People have assured me that if properly diagnosed and treated I will be completely symptom free. It's almost too good to be true.

I am sorry for this rant, but I really do need all the support I can get and I've seen how wonderful you are with each other. The waiting and anxiety is drivning me crazy.

Thank you for this group, it has helped me lots already.

Love,

Marie

 

4 likes, 16 replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey marie09535

    Posted

    Marie, you wouldn't be the first person to be diagnosed with PMR around the age of 44, so you are definitely not too young to succumb!  But if it is PMR, it usually responds almost immediately to a dose of 15-20mg of Prednisolone. Even at a dose of 25mg, if you don't experience around a 70% reduction in your pain within a week or two at the very most, then it is unlikely to be PMR.  Your high early dose of 40mg could show an improvement in many other conditions not just PMR.  Hopefully next week your specialist will arrange for a whole range of blood tests etc to be carried out to rule out a range of illnesses - there is no specific test for PMR, it is usually a diagnosis of exclusion.  Meanwhile, rather than feeling so "scared", do try and relax a little because worry and fear will aggravate whatever condition you are suffering from.  Good luck next week and do come back and let us know how you get on.
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