Pain

[Rusty8]

Hi I have been in pain for many years prior to be diagnosed with Pmr , I have a few problems which are the nerves at 4/5 decompression at l5s1spinal stenosis ace tabular replacement knee replacement and kidney transplant of 25 years also a/f and skin cancer

What I would like to know is if increasing steroids would help with these pains as things are getting worse and I am finding it hard to try to throw it over shoulder and get on with it

Please don't think I am unhappy with the renal consultants as I am very grateful for all the help they have given me over the years and I am trying to understand why the docs can't seem to help me I am a complicated case as they say but I keep on thinking there must be something that can be done in this day and age

Would like to hear from anyone else in this situation and how they cope as after years of being in pain I am finding it harder each day to cope thank you in advance

I must say I am now 70 but don't feel like it the pains are nothing to do with the age as they started when I was 14

[DorsetLady PMRGCAuk volunteer]

Hi Rusty8,

Sorry to hear you are in such a bad place at the moment, but increasing your Pred is not the answer unless the symptoms are PMR GCA related. Whilst higher levels of Pred do mask other pains, they should not be used as painkillers per se - much too many side effects and complications.

There are painkillers that can be taken along side Pred, so think you need to see your doctor and discuss the possibilities with him. Sure he will be able to find something to help you through this very difficult time.

Chronic pain is very debilitating I know, but there are options for you - you just have to find what's best! Good luck.

[Rusty8 in reply to DorsetLady]

Thanks Dorset lady problem being anti rejections don't get on with other pills this is the problem as I was told harshly even though he was correct I could have been dead without transplant another words get on with it he made me feel as though I wasn't grateful for what I have been given and I can assure evey one I am I still have a little cry to myself 14th December

But I suppose he was one if these abrupt ones

I will try again at unit on Thursday and will tell them exactly how I feel instead of just saying everything is fine except for pains thank you for replying

[DorsetLady PMRGCAuk volunteer in reply to Rusty8]

Unfortunately some doctors, who may be brilliant in their field lack people skills! Don't know it's always deliberate, although sometimes it can be, but it would be nice to be appreciated as person sometimes rather than just an illness that needs treating.

Hope you do get some positives from next appointment, and if you don't tell them you're not okay, they assume you are!

[PMRpro Ambassador]

I very much doubt that increasing pred would do much about your other sources of pain - pred isn't a pain killer in itself, it is an antiinflammatory and relieves pain indirectly by reducing the inflammation.

If you are having such problems with pain then I think you need to ask for referral to a pain specialist/clinic - they not only seek ways of relieving the pain but also teach you ways of managing your reaction to it and teaching coping mechanisms.

I do hope your doctor will be helpful - chronic pain is very debilitating, there's a statement of the obvious!

[Hidden]

Help! I am 80 with PMR reducing down at 1mg in 7-8 wks, now at 10mg as I went into an operation for Spinal Stenosis- vertebrae 4/5 .Successful 100% for 7 days- w/e gradually returning but not the symptoms, some Pain 'tired, languid , thick feeling in head .had to reduce the walking -not extreme ,saw Doctor on the Wed and a general testing- nothing but reflex's in left leg weak but also in rht less. Seeing the Surgeon on Wed.12th.BUT today SUN. had difficulty in getting out of Bed also weak generally. Feel I have got to try something( been a faithfull reader/member for a couple of years) thought it might be the body calling out for Pred ,symptoms similar to reduction of PMR I thought so I have taken the plunge and added 2mg-making 12/day. if it works Ok -if not well see what the Surgeon says. Any comments especially from the learned Ladies, more than Welcome. John

[TooSore]

I'm afraid I don't really understand all of the issues you are dealing with as I am "just" dealing with PMR. However, I am learning that some alternative or co treatments can sometimes help. Have you considered Bowen or Cranial-Sacral therapy, massage or acupuncture? They may make you feel better.