PMR in the abdomen/back/waist area

[meadows]

I have been diagnosed with PMR. The pain started in my upper left side back (felt like a muscle strain) then became more intense, settling around my waist, with muscle spasms in previously vulnerable areas (ibs type pain in bowel area and a weak muscle in my upper abdomen) The skin around the painful area is ulta sensitive, my hands have numbness/pins and needles type sensation. In June when pain at its worst my CRP was very raised and I was slightly anaemic. I saw a consultant and

was put on 20mg prednisolone and the relief was instant. My bloods all returned to normal.

I got down to 12.5mg pred and due to start 6 weeks at 10mg when my symptoms returned, albeit less severely. I went up to 15mg pred but the pain remains and skin sensitivity has returned, my GP has suggested it may not be PMR ( the pain was never in the typical PMR regions of shoulders, arms and pelvis) and suggests neuralgia may be the cause (despite the fact I have tried all the painkillers generally prescribed for neuralgia and nothing worked. In fact I have never found a painkiller that takes this pain away). Only prednisolone and now my dilemma is what to do next?

Has anyone else got these symptoms?

[PMRpro Ambassador]

I had sensitive skin in the early days of PMR and pain in similar areas to those you describe - it did improve with higher doses of pred but in retrospect I'm fairly sure that, although I do definitely have PMR too, this is an add-on. Mine was due to myofascial pain syndrome and nerves were being pinched by tensed muscles. I have variously used massage, manual mobilisation by a physio, cortisone injections under the skin (no idea if that is available in the UK, I had them in both Germany and here in Italy) and Bowen therapy - by far the gentlest approach and I found very effective for other things too.

Another thought - it isn't shingles is it? You can have it without a rash and that, of course, makes it difficult to diagnose and you need a blood test.

[meadows in reply to PMRpro]

My GP was convinced it was shingles at the 'grasping at straws' stage, although I know for a fact I've never had it - only chicken pox. I'm trying to get back to 12.5 mg of prednisolone now but I have the pain all round my waist area now and not sure if I should probably go back to my 20mg original dose. My GP is against it but I really don't want to deteriorate further.

[PMRpro Ambassador in reply to meadows]

That's the point - you don't "catch" shingles, you only get it if you have had chickenpox at an earlier point. The chickenpox virus doesn't leave the body and becomes dormant in nerve endings until something triggers it to revive itself. Then it causes pain in the nerves in which it is. Mostly you get a rash - if you do then you become infectious and can give chickenpox to someone who has never had it before, just as you can pass on chickenpox, until the blisters are all scabbed over. In some cases the rash doesn't appear in shingles, just the pain, and that makes it more difficult to diagnose for obvious reasons. If you catch it early enough antiviral medication will shorten the illness and help with the pain. Once the neuralgia is established I don't know if nerve pain medication will help - but you say it hasn't for you anyway.

Does more pred help the pain? The NIH (in the USA) suggest it for the pain - which is strange in some ways since it could have been the pred that predisposed you to shingles in the first place!

This is a really good article about shingles:

ninds.nih.gov/disorders/shi...

And if the GP suggests the shingles vaccine to you - NO!!!!! Not to be given when on pred.

[meadows in reply to PMRpro]

Thank you for that, I have increased the steroids to 15mg but am still getting discomfort so may decide to up it to 17.5 mg again and then taper it after a month. I can't see the point in suffering for the sake of prolonging the steroid treatment. Still unconvinced it's shingles related.

[meadows in reply to PMRpro]

I'm pretty sure it isn't shingles,

my G P originally thought it was but that pain is usually confined to one side only and my pain affects both, plus it started in my back above the waist on both sides. My consultant is convinced it is PMR but I don't have stiffness in the mornings and very rarely do other PMR sufferers complain about sensitive skin, which, to me, is one of the overriding distressing symptoms, together with the tingling in my hands/fingers. Wish I could be sure what it is. Thanks for your reply.