more painfull in my hips

Hi Sheila,

Sorry to hear about all your pain. My PMR started with a very stiff neck that did not respond to anything. Typically PMR pain is in the neck, shoulders and arms (like a cape of pain) and in the hips. I also had pain in the back of my skull (still do for that matter three years on). The hip pain can make turning over in bed, rising from a chair or dressing pretty difficult without medication. Some people can't raise their arms, others can't stoop to pick something off the floor. It is often hard to put on socks or underwear. It differs from person to person, from day to day and according to the time of day. It's usually worst in the morning. Do you really have to wait until the end of the month for your tests? Try and get them sooner. The written descriptions of PMR were spot on as far as I was concerned. I had never heard of PMR until I was diagnosed. I went first to get my prescription filled and then to the Medical Library. Everything I printed off about PMR described me to a tee. It has lasted longer than I hoped but I'm now transitioning down to 2.5 mg and feeling much better. I hope you get tested and properly diagnosed as soon as possible.

Jill

JANCY123

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PMR - For the new people

Good Luck

Thank you for your reply Jill and Mrs K I have had this hip and neck pain for about 5 years but I also have lumber spondolysis and I thought the same in my neck. I went for a scan on my neck but apart from a little bit of ostio everything was fine. I think you come to a point where you just give up and keep taking the tablets lol (tramadol)

I went to my doctor a few weeks ago as I could'nt walk due to a painfull foot, she sent me for an ex-ray and also an appointment with another doctor treats people with arthritsis ect. It that point my neck was very bad and I was very depressed, she looked at my ex-ray and said my feet were beautifull (her words) and no problems with my joints ( A big thanks to my mother for making me wear good shoes )

She then asked me about all my pain and said she thought I had PMR or Fibromyalgia. I have never heard of PMR so I looked on the internet so here I am.

I also have Asthma and over the years have had to have large doses of prednisalone 40mg for three weeks usually. I have allways commented to my husband that my aches and pains get better when I am on them and I can walk and NO pain. So I do feel it is PMR and like most of you on here I don't cope well on steriods. I am very bad tempered and just can't sleep when I am on them.

It is so nice to think that I have this website to come on it is so reasuring to know that you are not alone with this problem.

Thank you again and sorry about the spelling mistakes

Sheila

Hello jancy193 (or should it be Sheila!),

I too had foot pain before being treated with prednisolone - it was the biggest pain (excuse the pun!) because standing and walking is a bit necessary to do anything. I can ignore the housework but I do like to be able to walk to the loo! The pain felt a bit like walking on glass, was worst after not being on my feet for a while and did improve a bit once I could start to get my feet moving a bit. And I'd had the pains for more than 4 years.

It is quite common for people with undiagnosed PMR who have to have steroids for something else (like asthma or even a cortisone injection into a joint) to notice that the pains go away for a while, returning after the steroids are out of the system. The rapid response of PMR to steroids is a sign which is taught to GPs as being a diagnostic tool along with the clinical picture.

If I were you, I wouldn't panic about the concept of needing steroids because you don't do well on them: the dose you have had in the past at 40mg is quite high and in this context of PMR/GCA is needed for temporal arteritis but generally not for PMR. Lots of people respond to 15mg a day and some are able to reduce within a few months to 10mg or less, and the lower the dose the fewer the side-effects.

And I reiterate: it is possible the blood tests won't give a clear picture. The rheumatologist may do a whole load of things to rule out other rheumatic diseases but there is no test which will give a clear diagnosis PMR as opposed to anything else. It is a diagnosis based on clinical history, exclusion of other possibilities and a rapid response to a trial of steroids.

all the best when you're seen,

Eileen