PMR or something else
Posted , 13 users are following.
Hi
After 3 years on pred, reducing slowly I got down to 1mg but was still experiencing pain, I wasn't sure if this was PMR related or not.
.Around 6 months ago I stopped taking pred altogether, the pain hasn't got any worse and it isn't the same pain as I had when I first started with PMR, it was so intense then I had bursitis in my neck at the back of my head, in my and elbows and could hardly move.
The pain I have now is achey, neck, elbows wrists, knees and most painful my feet. I have headaches and migraines, which are new to me. I have restless legs, carpel tunnel, and diverticulitis, I don't sleep well sometimes because of pain, but then there are times when I do get a good nights sleep and the following day the pain is less. I'm wondering if I have fibromyalgia.
Anyone familiar with this ?
1 like, 37 replies
linda82701_USA angelcake61
Posted
Hello, I have been diagnosed with PMR for 3 years and fibromyalgia for over a year. I have never been pain and stiffness free. Am currently on 8 mgs of prednisone. It it hard to differentiate one from the other at times. But when I have had a flare and upped the prednisone it has helped quickly. The lowest I have been on prednisone is 5 mg. My rheumatologist pressed different points on my body to check for fibromyalgia and I was very painful in all of them. It does sound like you could also have fibromyalgia. Have your doctor check you out. Fatigue and tiredness can be overwhelming. I am 72 and still hoping for remission. I just have to take it a day at a time. All the areas you have pain I have experienced. Best wishes to you!😊
judith90525 angelcake61
Posted
Pred is our friend not our enemy and at doses below 7 mg unlikely to do us much harm. After 3 years you would be keen to stop altogether but not if you are in such discomfort? Some people have to stay on low doses to control the inflammation. Find the dose level at which you are comfortable and stay on it for a while.
lilian05079 judith90525
Posted
Sorry '10 months on'..not '19 months on'
lilian05079 judith90525
Posted
That was meant for angelcake61...
lilian05079 angelcake61
Posted
I have been off preds for 10 months..i experienced all the pain you have after coming off the preds ..it was bone pain caused by the preds and 19 months on ot has all abated..i also had headaches and migraines was told it was to do with my hypothalmus and pituitary recovering from the suppression by preds which are both connected to the adrenals and endocrine system....i also had bursitis in my shoulders for which i had a cortisone injection recently and am now pain free. I will be having physio and my ortho told me it will eventually be healed with the right treatment. At present ten months on no bone pain, no migraines and headaches and no bursitis pain. Life is good adrenals are coming back and endocrine system up and running slowly it could take up to another year for complete recovery from preds......my very best wishes to you angelcake61...
Anhaga lilian05079
Posted
Lilian, i'm interested in your comment that pred caused bone pain. Could you elaborate? All a cursory search on line reviealed was that people on short term high dose pred may experience pain after stopping the treatment, and also that pred can, ironically, cause muscle pain in some. I know pred is implcated in bone thinning, but as far as I know osteoporosis itself is not a painful condition, which is why a diagnosis is often not made until a bone breaks.
lilian05079 angelcake61
Posted
Hi angelcake61
Meant to put '10 months on not 19 months on....
angelcake61 lilian05079
Posted
Hi Lilian.
Thanks for your reply, I've never seen anyone else but my doctor. I'm due to see her about the symptoms I have now, it's good to have another perspective, your post will help at my appointment.
When I went a few months ago and asked the doctor for an ESR level, he said they only do them after a diagnosis !!!!! I'm now going to see a different doctor but it's took a six week wait.
BettyE angelcake61
Posted
It would be interesting to know what criteria he used to diagnose you in the first place.
The cynic in me wonders whether your surgery has blood test "targets". I'm sure mine has.
I've been off steroids for over four years and was doing quite well, I thought, having, fifteen months ago got through a fraught 18 months of nursing/caring which ended in bereavement.
The doctor I saw last week who has never seen me before grudgingly agreed to do more tests when I said I had muscle pain and stiffness but I have to wait a fortnight!
Without any discussion or asking any questions he decided my problem was depression which was a nice cheap diagnosis as I refused happy pills.
If I sound annoyed that's because I'm horrified at the way I was treated compared with the care I have received from the same surgery in the past.
angelcake61 BettyE
Posted
Hi Betty
I had to go to the AandE, sat there all morning, I could hardly move from head to toe, they gave me steroids 4 hours later I could have swung from the chandeliers. When I next visited the docs , my blood test results had shown way into the hundreds both ESR ans CRP. I was then put on a regular dose of 15mg pred.
iPrevious to this I had been visiting the doctor regularly for around 6 weeks, eventually I told her my friend thought I had PMR as I presented the same as a relation whom has it. The doc replied that just means, many muscle pain, but I had been on Naproxen without ant effect at all.
She told me I wasn't looking after myself, that I had a disabled husband and I should put him into care. She has since left the practice.
That was 4 years ago.
EileenH BettyE
Posted
EileenH angelcake61
Posted
She'd have left the practice with a flea in her ear if I'd had anything to do with it. Naproxen rarely works in PMR. It DOES help in anklylosing spondylitis though. And as for advising patients about their personal choice with disabled dependants - she should leave THAT to those who understand. Another prat!
margaret89358 angelcake61
Posted
angelcake61
Posted
Hi, I stopped the pred after being on 1mg for months.
i expected the the pain I had then to get much worse if it was PMR but it didn't.
I wasn't worried at about being on the pred and she n fact was probably reluctant too, I think the amount of pain I was in at the beginning left me with terrible memories and I never want to be in that situation again. My doctor did keep ignoring my pleas tho.
thanks for you reply.
EileenH angelcake61
Posted
I suppose one way to find out would be to try a few days of pred - if it were to go away it isn't fibromyalgia. But the fact it has stayed stable suggests it isn't likely to be PMR. Perhaps I should whisper this - maybe it is just aging?
I wouldn't mention the F-word to the doctor, don't put ideas in her head! As for "we only do ESR after a diagnosis" - I'm speechless! Normally it is regarded as part of the diagnostic procedure!!!!
Have you ever asked about having a sleep study? Poor sleep can be due to many things, including but not only pain. Especially since you say you are better after a good night's sleep.
angelcake61 EileenH
Posted
Thanks Eilleen
My poor sleep is restless legs and sciatica, a low amitriptyline works for these at night, but doesn't last long enough, then I have it through the day. Foot surgery has proved to be a bad move, the pain is now worse. They have offered to take out the joint implant and fuse it now, I just want to make sure it's the implant and not something else. I'm soon to be 64 so didn't think it would be age related, but I may be wrong. Too many things going wrong, but I will not roll over 😀
BettyE EileenH
Posted
maybe it is just aging? [wink]
Eileen, don't you dare! I left that bit out in my recent diatribe. But that was another of his suggestions albeit with a smile.
The thing about being 85 is that I've lived with my body a long time. I've treated it well and I know when it's experiencing something that needs investigating. Yes, many of my aches ARE down to ageing and long term OA and I am used to dealing with them. If I'd read my back notes for the last couple of years I'd have considered depression as a possibility BUT if I was seeing a new patient I'd not have jumped to the first easy conclusion.
Interesting. I see that in your post aging is accepted but in mine only the English ageing. Irrelevant, I know but it's the proof reader in me coming out.
BettyE
Posted
No, now it's posted, the little red lines have disappeared.
EileenH BettyE
Posted
I apparently don't have the spellcheck thing on - it was on for a while but I noticed a couple of weeks ago it was missing.
Oh absolutely Betty - I think he is a prize prat and possibly needs a lot more experience with relatively healthy country-dwellers who have looked after themselves. But I suppose he is programmed to assume that a lady left alone when her partner dies is bound to be depressed - and not recognise the ones made of sterner stuff like you. I know when something is not right - but even in my 50s always got the "let's wait and see" put-off. When I had already done my "wait and see". Drove me up the wall!