Started with pains in shoulders last January, had tests not PMR diagnosed with low vit d. Took the dose and follow maintenance dose since (2000 units maintenance) . Was hospitalised in may with right hip pain, couldn't sit, couldn't walk, x ray clear took about 6 weeks to clear.
Now my shoulder pain never went away just stayed there, since January it's got worse started really bad in the right, hard to sleep wake up stiff and in pain. Have pain on ankle /calf area and heels. Also now have pain in back, and thighs and spreading to both sides and pain in biceps. Had blood test in January still no inflammation showing, had x ray now waiting on scan for shoulder/bicep.
Am in pain even on rest, it's not vit d that's fine now all my blood tests come back normal. Any ideas? And how can I convince the gp to try steroids if my results are all normal he even suggested stress but I can be in pain sitting colouring when I am relaxed
Oregonjohn took the words right out of my mouth. I agree with him. If it's not PMR could it something else in the very long list of auto-immune disorders? My PMR pain was much worse in the evening, during the night, and in the morning. It wasn't so bad from about 10 a.m. to 3 or 4 p.m. Is yours constant or does it fluctuate?
It's worse first thing in the morning and in the evening but also at rest.
How do i convince the doctor to try prednisolone if he doesn't think it's that. Was so desperate for relief was looking at buying online but know that's silly.
Around twenty per cent of people with PMR do not have raised blood markers, you may be one of them, your doctor should be aware of this. There is a diagnostic for PMR a sort of steroid sandwich where you take vit C for a week, steroids for a week then vit C for a week, your doctor may have heard of it, if they don't want to just try you on steroids.
Faye said it well. Find a doctor that isn't stuck in his or her own ego. A half-way decent rheumatoligist should know all about PMR. Mine knew exactly what it was after hearing my symptoms and a quick physical check.
Hi Kadge, so sorry that you've been struggling with pain for such a long time with no help. I have PMR but also fibromyalgia. I know that we can still have PMR without raised blood markers. Last week the locum doctor I saw said that my PMR was under control as my markers were normal. ?.unfortunately my body doesn't seem to know that as I am in horrible pain. Has anyone suggested fibromyalgia? Sometimes I don't know if it's fibro or PMR which is causing the pain or fatigue. Hope you get the right help soon.
Hi I am one whose blood markers never showed the elevated ESR and CRP (???) I did have infection/inflammation SOMEWHERE. I had the horrible hip/shoulder pain. Couldn't hardly get in and out of bed. Couldn't walk, all I wanted to do was sleep. PC ruled out all other immune disorders before diognose of PMR. started me on injection, and 20 mg daily of Pred. I had relief totally in 5 hours. I have had ups and downs. Started in May 2015. Started going to Rheumy. Slow reducing was down to 10, but now have developed GCA symptoms. This is going in another post to Eileen. Please read when it is posted. Good luck with a DR
I don't have raised markers either, but my Dr did give me Pred to see if it helped. It did, withing 24 hours. Dr based his diagnosis of PMR upon this.
There is a word back in your post which makes my blood boil. It is the word STRESS !!!!!!.(used by a Dr) Back in my 30's I struggled with a throat problem for 6 months. My Dr kept saying "women your age suffer from stress". It is just stress. Of course it wasn't !!!! To this day I am still riled (or stressed ) about letting myself be fobbed off with that diagnosis. Stress may be reponsible in the beginning for some of our physical deteriorations, but never take that diagnosis from a Dr.
Went back to gp today and virtually begged for pred trial she wouldn't though, said steroids would make anyone feel better and without a diagnosis she won't. She wants me to have another blood test looking for a different inflammatory marker. I could of cried all she offered was naproxen again.
My x rays showed de generative changes and calcification but that doesn't explain pain everywhere else.
Kadge I am so sorry you are having such trouble. Does the Naproxen work? I hope you can find a rheumatologist who is good. I was forced to go to a rheumatologist privately in the end as my GP said I had a virus which seemed to last several months! I even suggested PMR to him and his eyes sort of glazed over.
To be honest I had problems taking them last time and not keen on them as a long term solution. This Dr was having none of it she said PMR affects the neck and the shoulders certainly not my lower legs and ankles, she wouldn't even entertain the idea.
My GP tried to get me to take Naproxen and I was none too keen. They had no effect on the PMR anyway. I cannot believe your doctor thinks PMR just affects the shoulders, I think virtually every definition of PMR says pain in shoulders and or hips. I wonder where some of these medics come from. What is frightening, how bad are they at life threatening diseases?
Hi ;Kadge, My symptoms exactly fit the PMR dx which my GP did diagnosis, but first ordered lab work; the ESR was normal, the CPK somewhat off. He started me on the prednisone pak right after the lab work where you take decreasing doses of pred 4mg. ea. day for 6 days when it is down to one tab. After the first day when a total of 24 mg. was taken, I felt so much better, much less stiffer, little pain. So at Nov.1, 2015, my appointment (after the pack was taken), I was started on 40mg. a day for 1 month, then taper to 30, I just recently went down to 25, then 20 until March 15 then will take 15mg ev. day. So the actual lab results are NOT always definitive of PMR. The very fact that prednisone if so effective is diagnostic in itself.
Bloods tested again I now have raised muscle enzymes but nothing else showing in bloods. Pain is a lot worse doctor given naproxen first dose had an no effect. She has referred me to a rheumatologist so actually feel like I am getting somewhere now although it's a long process. Not sure how long the waiting time for a rheumatologist is