Acute upper arm muscle pain - could it be related?

[Chrissy B]

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:

[Thakator]

Hi Chris,
While I have no way of knowing exactly what is causing your arm pain I can tell you that Wegs often causes serious pain throughout the body. This includes the joints and exremeties so it wouldn't be unusual to find it in the arms. And, the Wegs pain is noticably worse than "regular" pain - - that's how some of us differentiate between the onset of a flare and something else going wrong.
You will find many posts herein detailing the relationship of Wegs and pain; personally, I have had much of it - - including in my arms (even asked a neurosurgeon once to cut off my right arm because I simply couldn't stand it any longer. So, yes, it could be Wegs - - but it could also be something else. Such is the nature of our battle with this thing. Best of luck, Ron

[Sangye]

Hi Chrissy, welcome to the status of a posting member! (teehee)

The first thing I would want to be ruled out is a blood clot. It's not common in that location but it could happen. Wegs makes us 23% more likely to develop clots-- a fact that most docs are not aware of. A simple ultrasound is all that's needed.

If the ultrasound is negative, I suggest seeing a chiropractor for an evaluation. Since it occurred after painting, you might have a nerve entrapment syndrome which can be treated.

The fact that it occurred after painting makes me less likely to think that it's a clot or Wegs, but the clot must be ruled out before anyone manipulates the area.

[jola57]

One of my earliest symptoms was the muscle pain, to wipe kitchent counter I had to change hands at least 10 times. It may be that you are flaring.
As to the weight gain, as you can see from the pic, I am not my svelte self. ha ha

[Chrissy B]

Thanks so much for taking the time to reply - there are some really good points made here. Foodfor thought as they say!

[elephant]

Chrissy, don't let the doctors tell you it nothing either. Need to be persistent. There is a reason to these muscle pains.

[RudiK]

Helo Chrissy, I had extreme pain in my shoulders and knees before I was diagnosed and the doctors said that it was probably age related (I'm 68). At the time I accepted it until other problems "kicked" in. I wouldn't accept that today. So, please don't accept any simple answer, be persistent, and maybe find other doctors, which is what I did eventually.
Rudi K,

[Shooppoop]

Although I haven't had the full diagnosis muscular pain is my biggest. It starts in my right elbow then spreads through the muscles in my right arm and eventually into my whole right side. Pain killer do nothing to help with this pain.

At the mo it feels like I am starting flare no. 3 as this pain pattern is happening again.

[vdub]

Very strange.... I am feeling great! But, over the last few weeks, my right arm has been tingling from the shoulder to the finger tips. It feels the way it does when we say our arm or leg or whatever "went to sleep" from having a lack of blood flow. The tingling doesn't really hurt and it's not even all that annoying, but it's always there. It's my right arm -- the same as a couple of you. At this point, it's just an interesting phenomonem....

[elephant]

Do you have any neck problems?