Who is right?

[Annodomini]

I've had PMR for almost a year and am on 5mg of prednisolone. However, although the ESR level is down to normal (next blood test tomorrow), I have pain in my lower back which makes it difficult even to walk round a supermarket. The doctor said this was not a PMR symptom - only the pelvic girdle, she said, but I think she is wrong. I will see another partner for the test results and discuss it with him, but in the meantime I am going to France for 12 days with my sister - a retired GP - who advises increasing my pred dosage. Which doctor do I take notice of?

[Hidden]

I can only say that from recent experience, I have the same issue and am going to ask my GP about it this week. I was okay in that area apart from a nagging stabbing pain in the lhs lumbar region I have had for years (PMR??) but the intial dose of 20mg when I was diagnosed, allowed me to run around like a lunatic for the first time in years. Ever since the dose was slashed, I have a dreadful ache on both sides of my spine about the same area and I too can hardly walk far because of this, in fact I have been more or less housebound with it, for a walk is really out of the question and my Co-codomol and Cuprofen barely touch it. Did I stress my back? I don't know, really, but if we both suffer from PMR and we both have pain in the same area, it must say something.... Maybe someone who is more exerienced than me can help you Anno, but rest assured you are not alone in this. Lifting my legs manually into the car is also a nuisance after a shop in the supermarket and I have been doing this for years too....I was under the impression it was the hip girdle, not the pelvic girdle?? Maybe we could both get some clarification on this please....tks x

[Annodomini]

Thanks, JC, i don't think my backache is as acute as yours. It is a dull ache that gets worse with walking and weakness down my thighs. It was like this before the PMR flared up and was diagnosed and the prednisolone made me, like you, perk up enormously. Reduced dosage, symptoms come back.

I will have a word with my doctor sister about this, though, as someone I know says: ask two doctors and you get three opinions!

[Polywotsit PMRGCAuk team member]

Hi Annodomini! Well, lower back pain in the spinal region isn't one of the recognised symptoms of PMR. Polymyalgia is distinguished by the pain and stiffness in the big muscles that attach the limbs (and the head) to the torso. So I think it's ok to call the nether part of this either the hip girdle or the pelvic girdle (but will check with the medical advisors). Some people feel worse in the front, and some worse in the hind quarters (I used to get a literal pain in the bum). Getting in and out of the car is difficult because it involves lifting and swivelling the legs and hips at the same time. Walking any distance brings on a deep aching. On the other hand, there are lots of people with PMR who complain of pain in the back, around the spinal region. Now, I guess this could be separate from the PMR, or perhaps it's because we start to walk and hold ourselves differently when we have PMR, and this sets off the pain in the spine.

As far as travelling is concerned, that can be one of the things that puts a strain on the system. Several members of PMRGCAuk have said that when they go away, they don't up their dose but they do take enough with them so that they could up their dose by 2.5mg for a few days if they have a flare-up.

And by the way, the ESR rate is notoriously unreliable as a measure of how bad your PMR is!

Hope you have a lovely time in France,

K

[Annodomini]

Thanks, Kate. I am sure the pain is not spinal. It seems to be in the muscles just above the buttocks if that makes sense. And I shall certainly take several strengths of prednisolone with me to France and go on the advice of my private medical advisor.

[mingie]

I had severe pain in my left hip, was barely able to turn over in bed and lost sleep. It also restricted my movements/activities during the day. As the day moved on so did I. However, after x-rays, it proved to be the sacrum which was affected. I had no treatment for this (I don't take anti-inflammatories) and strangely enough, since the problem with my shoulders, the pain seems to have subsided or maybe I'm concentrating too much on the pain in my shoulders and don't notice the other? Still awaiting appointment with the orthopaedic surgeon.

[Annodomini]

i have had a hip replacement and a part shoulder replacement which is still giving me trouble. The pain in this shoulder gets confused with the PMR symptoms. Nothing is ever simple!