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Myositis - inflammation of the muscles Options
brendab
#1 Posted : Saturday, July 21, 2012 9:03:14 AM Quote
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Hi everyone

Yet again it's been some time since I posted but I wonder if anyone else has this condition. I went for a checkup yesterday with my rheumy and just casually mentioned my upper arms are very tender to the touch. I also have the same in my thighs but put this down to the bursitis I have. After doing the usual tests on my shoulders etc he asked me to go and sit down but without any warning grabed both my upper arms. I yelled as it really hurt. He has now asked for blood tests to be done including muscle enzyme checks for Myositis. Naturally when I got home I Googled it and frightened the life out of myself (as we do). Does anyone else have this condition?

I hope everyone who remembers me is doing well - Brenda
Naomi1
#2 Posted : Saturday, July 21, 2012 11:15:02 AM Quote
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Hi Brenda. I don't know if I have this condition but I do know that my upper arms hurt too. Right in the muscles. I had a consultant do that to me too, grab me by the shoulders. I think it was to see how much I flinched (and I did a lot!). I HATE it when they do stuff like that. Why not just ask. It makes you feel like you are being tested and it's quite disrespectful. Anyway, I think I had some kind of myositis when I was in a severe RA flare because i simply couldn't lift my arms up as I didn't have the strength in them. It wasn't due to stiffness because at the time my partner could lift my arms up if I went floppy. It just felt like they were as heavy as lead and I didn't have the strength. When getting a cup off a shelf or reaching up to get my dressing gown off a hook I can remember having to cup my left hand under my right elbow to get more momentum. It was the same with my hips and thighs. My partner had to pull me up from a sitting position because I couldn't get up off the sofa unaided. Once the flare was bought under control with steroids, the muscle strength improved considerably. However it's not as good as it was before I became ill. During this flare I had symptoms in so many areas of my body from my joints to my blood vessels and from my muscles to my skin. This is why I've been told that I might have lupus as well as RA. I think in my case they just tackled the general inflammation with DMARDS (Mtx and then Plaquenil) rather than treat the muscles in particular. I'm now so much better than I was. I went from relatively healthy to almost completely debilitated within 48 hours. Now I'm back to around 75% of my full function (if it can be quantified like that). I hope this helps and you find my story encouraging. I'm glad you raised this issue as I'm quite interested in what was going on with my muscles at the time. I'll follow this post and hope to learn from the experiences of others whether muscle weakness and pain is common with RA. Best wishes from Naomi.
brendab
#3 Posted : Wednesday, July 25, 2012 12:12:16 PM Quote
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Hi Naomi

I did send a quick reply last week but not sure where it ended up and what actually is the function of this. Anyway I'll try again.

I suppose I'm 'lucky' as I'm already on hydroxy and steroids but think the symptoms flared up due to being told to come off the steroids. I got down to 3.5mg daily and then tried reducing to 3mg and then everything went horribly wrong. I think I was rapidly deteriorating back to where I was before the medication was balanced in 2007. When I saw my consultant last week he made no comment on the fact that I'm still on the steroids because, as I said to him, I have to live my life as best I can. He's ordered blood tests through my GP but as I'm away from Saturday I've made an appointment for when I get back.

I became ill in 2006 after a trip to China. I caught a bad cold there that wouldn't clear up. The next thing I had was a swelling above my left ankle with bruise like marks up to my knee. Pains in both ankles and feet soon developed and it rapidly became too painful to walk. Two GPs didn't know what was wrong so I was referred to my rheumatologist. He diagnosed Erythema Nervosa (not sure about spelling) which was caused by the bacteria from the cold. The pain in my ankles and feet was reactive arthritis which should have cleared up within 6 months. Almost 6 months to the day I started with pains in my elbows and arms and the rest is history! I was told from the start that the pains could be the start of RA but my diagnosis in just inflammatory arthritis.

My very best wishes - Brenda

Naomi1
#4 Posted : Wednesday, July 25, 2012 9:38:18 PM Quote
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Hi Brenda. I just wanted to mention that in some of my medical paperwork it says 'inflammatory arthritis' but in other bits it says rheumatoid arthritis so I don't think they are all that different. I think it's called inflammatory arthritis when there is no rheumatoid factor found. Please correct me someone if I am wrong. Naomi, X
LynW
#5 Posted : Thursday, July 26, 2012 9:50:47 AM Quote
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Hi guys

Inflammatory arthritis is the umbrella name given to a group of conditions that affect the immune system (as opposed to osteoarthritis which is wearing away of the cartilage in the joint and very different.) It includes, amongst others, Rheumatoid, Ankylosing Sponyliitis and Psoriatic Arthtritis.

In my experience I have found that doctors sometimes use this tem to describe a condition before a more definitive diagnosis can be made. My initial diagnosis was Poly- Inflammatory Arthritis but this quickly changed to Rheumatoid in the presence of physical symptoms but despite the absence of Rheumatoid Factor.

Myositosis, inflammation of the muscles, is sometimes present in those with Rheumatoid; unfortunately one of its many possible travelling companions! Rheumatoid is systemic which means it can affect all parts of the body so manifestations of muscle pain could simply be another aspect of Rheumatoid rather than a separate disease. Certain medications can also cause muscle pain, statins in particular come to mind.

Hope this helps,

Lyn x

My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Naomi1
#6 Posted : Friday, July 27, 2012 6:51:53 PM Quote
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Thanks Lyn. That's made things a bit clearer for me.
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