Chrissy B
10-12-2011, 11:26 PM
Hi there,
I have been a member of the forum for a couple of years now but have never posted - the forum is great and helps me realise just how lucky I have been.
I live on the Wirral near Liverpool and was diagnosed with Wegeners in January 2009 and think i was incredibly lucky to be diagnosed so quickly - after 8 weeks of what my GP thought was sinusitus I was referred to an ENT consultant who knew immediately that something major was wrong - he did a minor explorative operation after which he told me he thought I had wegeners and referred me to the rheumatology consultant who I am still lucky enough to be with.
Over the last 3 years i have had one flare up (12 months after being first diagnosed) and have been working hard to get off the prednisolone and am now down to 5mg a day with 2.5g of mycophenolate keeping me ok!
However thelast few months have been pretty low - I am used to picking up infections easily and do my utmost to avoid situtuations where this could happen - but I woke up one morning with Bell's Palsy and 2 months later my face is just aboutgetting back to normal - I am sure you can imagine what this did to my confidence after the weight gain of being on steroids for 3 years!
Now I have severe what I think is muscle pain in my upper right arm. It has been building up for about two months from what was a dull ache after spending a day painting and the last two weeks has got extremely bad cumulating with my GP coming out to see me as I couldnt move with the pain. He gave me valium as my shoulder appeared to be in spasm and this has now stopped however the pain in my arm is that bad that i am bed ridden and cant get up for more than a few minutes at a time. My GP cant see or feel any thing wrong with the arm and has suggested it might be related to Wegeners!
My rheumatologist is away this week so i thought i would ask you guys if any one had experienced anything simlilar?
The pain killers are dulling the pain a bit but sleep is difficult. I hope to speak to my consultant next week but would really appreciate your thoughts.
Thanks so much,
Chris.
(female, 48 and overweight!! But still desperatly clinging on to my sense of humour!):huh:
I have been a member of the forum for a couple of years now but have never posted - the forum is great and helps me realise just how lucky I have been.
I live on the Wirral near Liverpool and was diagnosed with Wegeners in January 2009 and think i was incredibly lucky to be diagnosed so quickly - after 8 weeks of what my GP thought was sinusitus I was referred to an ENT consultant who knew immediately that something major was wrong - he did a minor explorative operation after which he told me he thought I had wegeners and referred me to the rheumatology consultant who I am still lucky enough to be with.
Over the last 3 years i have had one flare up (12 months after being first diagnosed) and have been working hard to get off the prednisolone and am now down to 5mg a day with 2.5g of mycophenolate keeping me ok!
However thelast few months have been pretty low - I am used to picking up infections easily and do my utmost to avoid situtuations where this could happen - but I woke up one morning with Bell's Palsy and 2 months later my face is just aboutgetting back to normal - I am sure you can imagine what this did to my confidence after the weight gain of being on steroids for 3 years!
Now I have severe what I think is muscle pain in my upper right arm. It has been building up for about two months from what was a dull ache after spending a day painting and the last two weeks has got extremely bad cumulating with my GP coming out to see me as I couldnt move with the pain. He gave me valium as my shoulder appeared to be in spasm and this has now stopped however the pain in my arm is that bad that i am bed ridden and cant get up for more than a few minutes at a time. My GP cant see or feel any thing wrong with the arm and has suggested it might be related to Wegeners!
My rheumatologist is away this week so i thought i would ask you guys if any one had experienced anything simlilar?
The pain killers are dulling the pain a bit but sleep is difficult. I hope to speak to my consultant next week but would really appreciate your thoughts.
Thanks so much,
Chris.
(female, 48 and overweight!! But still desperatly clinging on to my sense of humour!):huh: