Hello. I wanted to introduce myself and to find out if my experience is similar to that of others.
I am a 67 year old retired computer consultant. My symptoms arrived slowly over a period of about three months, eventually driving me to make a GP appointment. He gave a seemingly confident diagnosis of myositis and referred me to a local fitness clinic for a 12-week course for strength and mobility improvement. So far I have attended the first weeks’ two sessions which involve resistance training and stretching exercises. I can’t yet tell if this is helping.
My right thigh and buttock are the most affected. At the moment, the most difficult thing I do each day is pulling on my right sock. Sitting down and having lifted my right ankle onto my left thigh, pain makes it almost impossible for me to bend sufficiently to get the sock over my toes.
Thankfully one is not in constant pain. Sitting, standing or lying down is fine. It’s the change from one to the other which is the issue. Having sat for a while, when I stand up, it seems to take 10 seconds or so for my muscles to ‘adjust’. Then the first few tottering steps can be painful until the ‘adjustment’ is complete. Then I can walk on, albeit slowly.
As for reduced strength, the clearest example is when I try to pick up anything dropped on the floor. I can kneel down on one knee to retrieve it, but then my legs don’t have the strength to get me up again and I have to haul myself up using a nearby chair or table.
I’m on no medication and not using painkillers. And there’s a backlog of DIY projects all of which have frustratingly had to be put on hold!
I wondered how my situation compares to others’.
Written by
nosmarb
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Your symptoms sound similar to how mine started in 2014.
How do you know you have Myositis, did the GP do blood tests, scans etc. ?
Good you are exercising but you need to get looked at by a rheumatologist, this disease can progress very quickly. I can’t do lots of things and have mobility issues.
I felt ill in March 2014 and had to stop work in July 2014, I see various specialists regularly to keep the disease under control.
The problem is not many people really understand the disease so make sure you get checked out properly.
Hi Mew53. A helpful site indeed! Thanks for replying so quickly.
Your good advice is much appreciated. My GP called for no tests, blood or otherwise, only palpating the affected muscles and assessing my (limited) abilities.
I think I should follow his recommended course of physical exercise for at least a few weeks and, should there be either no improvement or deterioration, then return and insist upon a specialist referral.
It's possible your GP thought you had viral Myositis, but your gradual 3 month onset does not quite match up from your description. He should have at least done some basic blood tests before giving diagnosis, which I think you should insist upon and include your CK level tested, which can indicate damage to muscle. labtestsonline.org.uk/tests...
I would also suggest asking for an referral sooner rather then waiting the 12 week course, as it will take some time before you receive an appointment through from the hospital; if you have improved then the appointment can easily be cancelled. I can advise of the nearest Myositis specialist if you let me know where you live, if there is not one fairly close attend the local rheumatology team instead.
Thank you so much for that helpful and informative advice.
I would hope to be able to see at least some improvement long before the end of the 12-week course and shalln’t wait until the end before returning to the GP when I shall certainly take your advice about the blood tests (and now I know which test to ensure is included).
I would hope that my private health insurance would help avoid delays, so if you can recommend a specialist that would be greatly appreciated. I live near Wellingborough in Northamptonshire.
I would suggest Dr Patrick Gordon via Kings Private, he leads the Myositis clinic at Kings College London. He's an extremely caring knowledgeable doctor (I see him myself).
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