Waiting for a diagnosis
Posted , 7 users are following.
Hi all,
At present I am waiting for a diagnosis of some description, had my bloods done today but they only tested immunology, rheumatoid factor and fbc.
Symptoms are severe pain in both shoulders, neck, arms and lower back with aches in both legs and hands and also stiffness. No swelling at all. Doctor said it could be spread of osteoarthritis but she didn't think it was and suggested PMR which I googled and all my symptoms fit except my age as I have just turned 46. Am in so much pain I could cry and just want a diagnosis and some pain relief. Pushing a buggy is agony, even walking wears me out and makes me ache so much I don't think anyone understands unless they are in constant pain
Thanks for reading.
0 likes, 14 replies
EileenH kadge
Posted
The guidelines and articles tend to say "Consider PMR in patients with the appropriate symptoms who are over 50". That doesn't mean that people under 50 can't develop it - though to listen to some of the experts you would think so! Some of them also say "there is no pain in PMR, only stiffness" - which only shows they have never listened to their patients or had it themselves!
It is becoming quite clear that people are experiencing the symptoms of PMR at younger ages - and although that may have been unusual in the past, I believe it is because patients who are younger tend to be told they have fibromyalgia and the real diagnosis is missed. What you describe doesn't sound like OA - although I was told that was what I had. That was 10 years ago when the PMR first started - no evidence of it at all now.
You sound to have a sensible GP though and I hope she decides to try you on a moderate dose of pred to see if it works even if the blood tests are non-conclusive. Of course, they might suggest something else in which case she'll try another approach.
Where do you live? Maybe we can recommend a good rheumatologist if you need one. Do let us know how you get on.
kay56703 kadge
Posted
I know how you feel!!!!
I was diagnosed in jan 2014 but was suffering long before that, but put it down to age LoL. Sounds like you have classic symptoms of PMR (bilateral pain in major muscle groups)but I am no expert. There are a few on this forum that are far more knowledgeable. Age is not a factor as there are some on this forum that are under 50 years, so don't take 'over 60' as gospel. I am 57 and I am sure that others will come forward with their own experieinces. I think your gp is heading in the right direction and if he/she suggests steroid treatment don't be put off. Usual prescription is for Predisalone at about 15-20mg which should do the trick. Then follow this forum for more advice. You may even need to educate your gp as they will want you to decrease to quickly at time but you need to listen to your body and the wise souls here.
You are in good hands now so stay in touch with this forum. It has been a godsend for me.
erika59785 kadge
Posted
Yes.....so important......to reduce SLOWLY from 15-20 mg.......I was feeling fine, almost pain free and thought to reduce from 20 to 17 1/2. I should have remained there the FULL 6 WEEKS on 20, and then reduce by 1 mg for another 4-6 weeks. I was not wise enough to do this, and I have a right hip pain and more left shoulder pain (tendonitis) since yesterday although I am receiving Physical Therapy for it. It has not helped much because the inflammation is still there.
Even my therapist told me.
I am back to Yo-yo which is not good. I live and learn.
Thought to share my experience.
Erika
pam41628 kadge
Posted
If it is polymyalgia rheumatica I encourage you to research the problems with taking prednisone (the drug most Dr.s recommend) It will alleviate the symproms but do nothing about dealing the cause. and look into the importance of diet (lots of greens, organic foods, turmeric, Udo's3-6-9 oil, no wheat, alcohol, sugar, caffeine) in helping you to heal. I used to like my glass of wine in the evening and am hoping to be able to enjoy it again. I haven't been able to wean myself off of coffee totally - but I do limit it. It will take time....but hopefully in the end, bring you back to health.
liz23617 kadge
Posted
These are only a few suggestions i am no medical person but do have a lot of pain in a lot of places. By the way i am 58 so have had fibro at least since my 40s, age doesnt always mean that you do or do not have a certain problem. good luck do some homework and then see your dr and ask if it could any of these things.
EileenH liz23617
Posted
There are a lot of overlaps between the descriptions of fibro and PMR - when I was researching what it was I might have it was a toss-up between the two. The rheumy I saw wasn't convinced it was PMR - he wanted it to be anything but - but he did give me 6 weeks of pred to help me through a trip to the USA. Thinking about it I don't see why he did, but he did and I had a miraculous response in 6 hours! Not 100% pain-free by any means but able to move and walk normally, above all to walk up and down stairs normally! When I next saw him he wasn't interested in the pred effect. As far as he was concerned that was immaterial.
There are a few people on the forums with both and they see a clear difference between the PMR pain that is controlled by pred, it doesn't touch the fibro pain.
liz23617 EileenH
Posted
EileenH liz23617
Posted
kadge
Posted
In response to questions and advice
I live in leicester, I have a fairly healthy diet as been losing weight for 3 years or more. Not prescribed anything except painkillers which have no effect on my pain at all. If my blood tests come back normal I shall be requesting a trial of pred to see what if any effect it has. Something has to help me pain wise. The shoulder arm and neck and upper back pain are all new in the last 5 weeks or so the lower back pain I have had for 10 years and diagnosed as spondylitis about 18 months ago but have never had X-rays scans or anything so it may not even be that.
Feel in a deep depression and that I sm always whinging and I don't want to be
EileenH kadge
Posted
A few years ago I had a car accident when someone drove out in front of me in southern Germany. There it is automatic for you to be told to go for a check for whiplash - which my local doctor confirmed and referred me to a private orthopod. After he had dealt to his satisfaction with the whiplash I asked him about the low back pain - which he insisted was wear and tear, I'd have to live with it. I couldn't walk for 20 min without severe low back pain.
A year or so later I developed sacroiliacitis - the events and treatment then are a story in itself but in the end I was sent to the pain specialist as the quick method had caused another problem. She said my entire back muscles were as hard as boards - and said it was very likely myofascial pain syndrome. The physio agreed and the two of them did a lot of work on the muscles. And both of them agreed that the orthopod had been wrong, the low back pain was muscular in origin. It has gone - I can walk as long as I like now. But all that pain has gone: the upper back pain was not only PMR - underlying it all was myofascial pain syndrome in shoulders, mid and lower back. Dealing with one doesn't always do the job - you have to sort out both.
kadge
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EileenH kadge
Posted
Good luck
kadge EileenH
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EileenH kadge
Posted
Looking forward to hearing the result.