I would be most grateful for any help and advice. At the end of February I started to get night sweats, slight nausea and the most awful pain in my neck/shoulder, making it extremely difficult to turn over in bed or move my head. The only relief was to get up. After a couple of weeks I noticed at night not only was my neck and shoulder painful , but my lower back and hips started to ache. The pain in my shoulder and hips does start to ease during the day which is bearable, but it seems to be most painful when my body is at rest. I have been to see my G.P. on several occasions who has said he can find nothing wrong and advised I see an osteopath. After 7 sessions with the osteopath and no relief she wondered whether I may have the symptoms of PMR and said I must return to G.P. My G.P. was very dissmisive of PMR and said I definately was not suffering from the condition, but reluctently took blood tests which showed no sign of inflamation. The G.P. then made an instant diognosise of Fibromyalgia. When I asked what this was she said to look it up on the computer which would probably give me all the info I needed. The G.P then gave me a prescription for 25mg of Amitripyline to be taken at night to help with pain. I have looked at the Fibromyalgia web site but I do not think I fit the criteria. Really don't know what to do next. Would appreciate help/advice.
Hi Laura!
Welcome - and you're in the right place here! If you've time and not done it yet read some of the recent posts from MrsK and you should find the info about the new northeast of England support group and a link. They have a website which has diagnostic criteria for PMR and loads of information - I won't put the website address in here as this post will then disappear for sometime until the moderators have approved it!
I assume amitriptylin hasn't helped. Does your practice have only one GP? Go back to another one if you can and argue your case. You are their employer (they get paid an allowance to look after you) and you deserve better treatment than that, that is downright patronising at best. This is repeating one of MrsK's mantras and she is responsible for setting up the NE support group as well as being part of the group behind national charity launch for PMR and GCA in March - so she knows what she is on about!
You don't say how old you are - there are 2 primary reasons for a GP (or consultant) declining to accept PMR as a possibility. Many believe it is only found in the over 60s which is not true, there are many in this forum who are well below that including me. I was in my early 50s when it first started in a form that is identifiable as PMR but I'm, sure I'd had it before. According to the consultants who are closely involved with the support groups and research there are women as young as their 20s with it. The second reason is the one you are showing: no inflammatory markers. That's also the case for me, my ESR is 4 and the CRP is also very normal. It is more common for younger patients to present with normal blood results and less typical physical manifestations.
If you read all the stuff on the NE support group site you will have plenty of info to compare yourself with. You also don't say where you are from - if you post on here saying where you are from someone will almost certainly pop up and possibly provide some advice as to where to look for a sympathetic rheumatologist because that is the next stage for you to go to if your GPs are unhelpful. You may find one of your GPs will agree to trial you with a dose of prednisolone. If it is PMR it should respond rapidly to a challenge with 15-20mg/day of prednisolone taken in one dose at breakfast (with no other medications taken within a couple of hours either way - there are a range of things that will stop you absorbing it as well so you would get a lower dose, that's all, nothing sinister!). My stiffness responded to about 60% within 8 hours, a response like that in 24 hours is common, sometimes you need a couple of days, maybe a bit longer.
Another of the confusing things about PMR is everyone is different - not only in how they present but also in how they respond to the steroids. However, many doctors accept a rapid response of the symptoms to steroids as being fairly much a differential diagnostic test if they are not sure. However - the diagnosis of fibromyalgia requires much more than your GP appears to have identified, it too has a diagnosis guideline which (as I remember) requires pain to be established at 18 specified sites all over your body and it doesn't sound as if they spent the time to do that!
Anyway - loads of info here for you to digest. Once the indigestion has eased, 
come back with any other questions you want to ask and one of the \"old-timers\" (sorry girls!) will do their best to provide an answer. Some of us were months before diagnosis so we all know what you are going through and we know it's something of a minefield. Although a rheumatologist is often more helpful it doesn't follow - the one I saw wanted it to be something far more horrid and depressing (as if PMR wasn't bad enough) but I had 2 very helpful GPs who accepted the concept of PMR.
Good luck - and keep in touch,
EileenH
Laura
website is www.pmr-gca-northeast.org.uk Link you need for Diagnostic Procedures issued by British Society of Rheumatologists 2009 is Useful Information. Download and take to your GP.
Also whereabouts in Wiltshire, there is a support group operating in the South West. Look under Support Groups.
Eileen has said it all - come back and let us know how you get on.
Good Luck and remember, knowledge is power. You just might have to educate your GP.
Hello Laura
Eileen has said it all but just wanted to add that your symptoms of night sweats, nausea and being unable to turn over in bed sums of my experience - I had the night sweats and difficulty turning with my then undiagnosed Polymyalgia and then a year later the nausea which turned out to be the onset of Giant Cell Arteritis (a linked condition).
As nausea with PMR wasn't my experience but it was with GCA, I just want to advise you to look out for any head and/or jaw pain and if these symptoms do appear, you should go straight to A&E immediately especially as in your case your GP doesn't seem to be either sympathetic or aware, and I sincerely hope that if he ever experiences either of these illnesses he has a more sympathetic GP than himself!
My very best wishes,
Mrs O (one of Eileen's \"old-timers\"!) :lol:
Laura, I sympathise with you and I think your GP has a poor attitude. You don't go to your doctor to have them be so dismissive. I went to my GP in the place where I lived previously complaining of the classic symptoms but was told, there is no cure for an aging body. It was only when I moved house and my new doctor did blood tests, which made him suspect PMR. He is now treating me for it, with good results. Why don't you make an appointment to see another GP within your practice; one who won't dismiss you by telling you to go home and surf the net. By the way my CRP is normal but my ESR was only slightly raised.
Hello
Yes I am very grateful I have an excellent GP With my first bout of PMR I had normal ESR and a raised CRP My DR was convinced it was PMR even though I was 54 and HAD been very fit I had to see a Rheumatologist privately to get steroids as the wait for NHS was 3 mnths and the Senoir partner in the practice was very against giving steroids unless it was confirmed
With my 2nd bout of PMR both my ESR and CRP were up in the 30s and it was straight on to the steroids So if in one person the signs can be so different there has to be a wider view on it
It is very difficult to be strong with Drs who arent interested or dismissive IF you arent feeling good yourself so do try and see someone else and take the information off of the internet and the best money I have ever spent was seeing a Rheumatologist privately I was bouncing within 24 to 48 hours on steroids !!
Best wishes Mrs G