Hopeful but very scared
Posted , 6 users are following.
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
tina-uk_cwall marie09535
Posted
Luckily for me I have not had any trubble with my GP or rheumatologist since diagnosis but I don't know what I would do if I did because no clear diagnosis or to be diagnosed with a condition that has a mind of its own is very frightening.
Your diagnosis, was it based on any blood test Results? If yes and it was based on raised CRP/ESR levels, and if whilst on prednisone these 2 aspects of a further blood test have reduced then that helps with diagnosis. However, you say that things are as bad as they used to be, in what way? The pain and stiffness?
presently you are filled with much anxiety and stress and whatever illness or condition you have wrong, anxiety and stress is not good for you. You must approach your pending appointment with more positively, yes there are lots of clinicians out there that don't believe any of their patients! You mustn't believe that you'll end up with one of those. They all have a duty to look after us, and that includes testing us and coming up with a diagnosis, no matter how long it takes.
you know what Marie, maybe you don't have PMR but that decision should be reached by proper medical investigations and then in turn rule out or in other medical conditions.
I develoed this condition aged 52 and although I did suffer from all the established symtoms I am still classed as atypical as I am on the young side to have such a condition.
please calm yourself right down - easier said than done - because this worrying is doing you no good. Please let us know how you get on at the consultants. Regards, christina
marie09535 tina-uk_cwall
Posted
Thank you for your kind words and for sharing some of your experience.
Yes, I had slightly elevated CRP/ESR (almost all these years) that normalized immediatly with prednisone. I forgot that to be one criteria for PMR. *Deep breath trying to calm down*
My new GP is fantastic, it's the first one I can talk properly with and ask questions, so I am in good hands really. I'm just in such a state.
Feeling as usual: exhaused, no energy, flulike symptoms, sore throat, sinus congestion, achy and head achy, muscle weakness, pins and needles, shortness of breath, claudication in limbs and jaws, worse after physical activity (washing up, handwriting, standing for more than some minutes at a time, very short walks).
Yes, I will write next week to let you know how it goes.
Thank you so much!
Marie
tina-uk_cwall marie09535
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linda17563 marie09535
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marie09535 linda17563
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/Marie
margaret22251 linda17563
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linda17563 marie09535
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linda17563 margaret22251
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.re: our husbands not understanding....mine always says, stop thinking about it, and it might go away!!errrrrr
margaret22251 linda17563
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EileenH linda17563
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marie09535 linda17563
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margaret22251 marie09535
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EileenH marie09535
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Do I understand you are still taking 40mg or did your doctor just give you a short course? If he just gave you a short courseof pred then even if it were just PMR it would return as soon as you stopped the pred. You may have needed more because it has been ignored for so long and there is some damage from the vasculitis. I had to wait 5 years for a diagnosis and I found it myself but I was never as bad as you obviously have been.
I am very sure there are a lot of people out there just like you - saddled with a diagnosis of ME/CFS that really have a vasculitis of some sort. anyway - good luck and don't go away now you have found us and I, at least, am looking forward to learning more about a young and atypical presentation and what it could be.
marie09535 EileenH
Posted
Yes, I'm still on 40 mgs, but I do believe it's slightly low for me. First I thought it was just a temporal worsening due to my period as I have read many flare around that time in the cycle, but now I'm not so sure. I'm a bit tempted to increase the dose, but of couse I won't as it's stupid and my rheumy appointment is just a week away.
Yes, I'm pretty sure we are many with ME/CFS diagnoses who actually have some sort of vasculitis or another. I came across an American researcher who investigated the link between shingles and GCA and became intrerested as I had shingles three years before falling ill. And I had a male friend with very severe ME/CFS who had also had shingles some years before onset. When I'm not too emotional, it's really very interesting researching!
/Marie
margaret22251 marie09535
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you can rant all you like to us as we all have been there, take care, kind regards Margaret