Needing diagnosis, doctor won't help

Hi Jon, my heart goes out to your girlfriend.  What an awful time she is having but thankfully she has you.  I am not medically trained but there are some people on the forum who are.  I have had ME for 14 years and managed it.  But June/July this year I started to  have aches and pains all over.  I was 59 then, I only got a dianosis of PMR in November last and it was a locum dr.  My ESR (measures level of inflammation) was 124 and it should be anything up to 19 and my CRP was 47.6 and it should be bolow 10.  

The only relief I got was from taking (steroids) Pred at 20mg and it was like a magic pill within hours and then after a few days it was like a miracle.  

If you stick around here someone will get back to you and there are lots of people who will support and advise you on what to do next.  I would be lost without this place and the people on here.  Good luck      Pat

Jon, the "constant throbbing pain" that you describe doesn't sound like Polymyalgia, plus it would be very unusual to be diagnosed with it at the age of 14 when your girlfriend's problems started.  PMR is an auto immune condition generally found in people over 50, who are often diagnosed through ESR and CRP blood tests that show inflammation in the body.  As her problems started following her fall, it is far more likely to be related to that or to some other auto immune condition perhaps triggered by the fall.  The foot specialist's suggestion of an MRI might reveal the answer.

Hello Jon, I'm so sorry to hear about your girlfriends predicament, all of us on this site know about pain and how destructive it can be. 

However, I have to say, and I'm not medically qualified, that I do not think she has PMR. PMR to some degree is age related and tends to hit the over 70s although it does hit people in their 50s, I am 54, and I did read on another website of a female of 36 being diagnosed, but I do believe that is very very rare.

pmr is an auto immune condition this manifests itself by attacking the joints and large muscles, causing inflamation and in turn the inflamation causes great pain. The condition is self limiting and lasts a couple or so years but unfortunately for some suffers it can fizzle away for many many years meaning that the patient could be on medication, albeit a low dose forever. It is treated, because it cannot be cured, by taking steriods that reduce the inflamation that I turn reduces the pain. The drug us called prednisone. Patients are tapered off the drug as the auto immune condition burns itself out, but it's important that we all take just enough of the drug yo cover the level of inflamation otherwise we end out with a flare up and in those instances we are forced to increase the medication again to temporarily cover the flare up.

it sounds as if she's had many tests that have ruled this and that out, which to a degree is good because at least she has nothing seriously wrong with her, but that is I am sure of no help because if the continuing pain. I'm so sorry but all I can suggest is that she keeps bugging her gp until a solution is found, which for her sake I do hope is very soon.

good on you for caring for her so much, I know that she will appreciate that. Look after her and I do hope this situation is resolved very soon. All the best, Christina 

Hi Jon, so sorry to hear about your girlfriend. As others have said she seems to young for PMR. My wife was involved in a serious car accident 3 years ago and after various scans, xrays and consulting specialists nothing was diagnosed and she was still in lots of pain. In the end she saw a physio who specialised in car accident whiplash and he found out that the pain was due to the fibres and tissue between the ribs, these were so traumatised that no painkillers would do the trick and as the pain caused her stress this would not heal. This also affected her back and spine but after therapy by him and several visits for a good massage she is feeling a lot better. Seek a good physiotherapist for another opinion first. Hope all works out for you both, good luck, Dave (tavidu)

As others have already said, if your g/f is only 18 the chances of her having prednisolone responsive PMR (the subject of this forum) is very low. It is generally an age-related illness although increasing numbers of younger people are being diagnosed with it and the youngest in the literature was 24. What you describe though does not sound like the typical symptoms patients complain of - and they are fairly constant, there are just a few things that make a patient "atypical".

I have had similar problems as a result of whiplash injury (not in a car accident which is where you usually hear it talked about). In the absence of doctors having any ideas, I personally would suggest you seek out a Bowen practitioner and try a few sessions of Bowen therapy. Google it to find a lot of information. There are physios who have trained in it and use the techniques. It looks very simple and as if they are doing nothing but believe me, there are a lot of people on this and 2 other forums who have had similar pain problems improved dramatically. The pain management service in a northeast of England hospital is doing a year long study using Bowen therapy to see if it can help patients for whom they have no other answers, in much the same way as acupuncture is offered on the NHS. Wherever you are, you will have to pay for the sessions of course - but if it will help you will know in 3 sessions at the most according to my practitioner who lectured and taught the technique. Prices vary, but shouldn't be as much as a concert ticket ;-)

I have to say - I'm a bit surprised the foot specialist says the leg-length problem isn't the cause of the back problem because that is a common cause of back pain but sometimes it can be the result of back problems affecting your posture as well.