Could it be Polymyalgia?

That is such good news! I'm so pleased you have at least one human bean in your practice! Is she youngish? I found our young women were much more approachable and well-informed - I don't know if it is improved communication training or merely I was lucky. Most of them didn't mind getting behind either - so you knew you would get a fair hearing. One seemed to want you out of the door before she'd written the prescription - but she accepted the PMR concept on the basis of response to pred whereas the rheumy wouldn't listen.

"I can't describe how wonderful it is to finally come away from a GP without feeling like they have me marked as a neurotic hypochondriac."

You don't need to - I know exactly what you mean and although I HAVE met non-empathetic women gynaecologists women GPs do seem to be a bit better even if the younger ones have this irritating habit of going off on materntiy leave just as you need them! Continuity of care my foot

She seems to have ordered most of what is useful - maybe a vit D level might have been interesting? That is exactly what should be done in PMR syndrome - the question is what is causing it, but to make a decision about that you need to look at everything that causes this set of symptoms. Some are banal, some are not and to tell someone with these symptoms to go away because it is all in the mind or "your age" is very naughty. One of them one day will be the patient with the "not nice" cause and you will have missed it.

I'm off to an international meeting tomorrow for a week - so I hope by the time I get back you have at least a few answers to something. Not that that stops me checking in regularly! The fact you say paracetamol does help the pain suggests it may not be plain bog standard PMR - most of us find there aren't any painkillers that do a lot and paracetamol isn't an anti-inflammatory. I found ibuprofen did cut the worst of the tendonitis pain - but only the worst, at a highish dose and that isn't good for you anyway. Funny how GPs won't give a trial of pred but they will hand out pretty foul NSAIDs like sweeties over an extended period despite the effect they can have on stomachs - one friend had a major gastric bleed after 3 days of ibuprofen!

Good luck on Thursday

Eileen

Yes, Eileen...she is quite young - young and keen and leaning toward you and really listening. Unlike the grumpy git who told me I had nerve pain who kept sighing, and who looked like he would rather be digging his own eyes out with his pen than having to sit and listen to another middle aged woman talk about herself. I used to think you were better with an older GP who had seen it all, but actually you are right - things are always changing in medicine and the younger ones probably are better informed - and keen as mustard too no doubt to get a diagnosis. These old buggers should retire to the golf course :D

Anyway - thanks for the comments - its great to get your input and enjoy your time away!

Lesley

Hello all.

An update.Things came to a head last Monday as I woke up and could genuinely hardly get out of bed. I had new pains in my lower back and hips that were absolutely excrutiating. Later that day I leaned in to the back of the boot to retrieve something and literally could not stand up again - I had to call for my husband, and stood in the driveway trembling and in a lot of pain and spent the afternoon crying...I was just in so much pain and it seemed no one was really taking me seriously.I realy am quite a 'buck up' sort of person usually, and I thought I had a high pain threshold, but this was in a different league. I was just so weary of it all.

However, I got down to the doctor for the latest blood test results on Friday. Again, NO inflammation, no raised CPR or ESR, no rheumatoid signs. My ESR is 2! However, the FSH was very high and she started me on the HRT Prempac-C immediately.

I was told it would take from a week, to up to a month to see changes, but I am really not exaggerating when I say that today, three days later - I feel like a different person. I still have the same pains in all of my joints, but it feels like it is on the move. You know that way when you have been terribly ill, and you wake up one morning and you know you are on the mend...the pain changes somehow, it moves, and is not so intense. The strange taste I have had for almost a year is gone, so is the sunburn tingling skin. Hormones!

I genuinely have never felt anything like the joint pain I have been having for almost three months. It was intolerable. Just shows you how these hormones (or lack of them) can affect us ladies. I didn't have a lot of other symptoms of menopause that women mention but I definitely got more than my fair share of the joint issues.

I totally underestimated just how much hormones can affect the body. When I first posted on here, I was sure I had some systemic disease that would need steroids, I thought I might end up in a wheelchair. It really was that bad.

I hope any other woman - who has shown negative for any inflammation (PMR, RA, FMS) and is still in terrible pain and was as frightened as I was can take encourangement from this that you are not going mad...it IS your hormones, and it can be fixed.

Hello Lesley

So pleased that you have found as answer to your problems (or at least some of them). It must be an incredible relief for you.

best regards and thanks for sharing your story

Mugwump

Hi Lesley , so pleased you have at last got a diagnosis , I thought all along it might be hormonal , anyway hope the treatment proves successfull , and things improve for you , I know many other ladies who have has the same including my self up to a degree , feeling much better now , do some more research , knowledge is power afterall

who would be a woman eh , ? Very best wishes

Helen

Lesley - what fantastic news! And thank you for coming back and telling us how the treatment has started. Don't go away yet though - we need the whole story.

I do hope it continues to improve even further - and have you been to see that other GP? Go sometime and brandish your notes at him - it may benefit someone else just as your story here will, at sometime, benefit someone whose GP won't listen and files them under "hysterical".

When I get to the other side of the pearly gates (except it will be downstairs not upstairs I suspect) I hope I get a chance to protest at the way so many diseases we ladies develop are so similar and confuse the male doctors!!! It isn't fair.

all the very best,

Eileen

As the original poster, just wanted to update on my situation for anyone who may be following this thread regarding sudden onset pain and stiffness in shoulders and arms etc and wondering if it is PMR or something else.

I really thought I had PMR, but my ESR and CPR were very low and my GP told me I did not have any sort of inflammatory condition.All I knew was I could hardly move with shoulder and arm pain - and later on, crippling lower back and hip pain.

The hip pain did subside, but I was beside myself with pain in my shoulders and arms. With limited movement in my left arm (unable to move it more than a couple of inches in any direction, or put it behind my back) and pain with movement in my right shoulder, I was subsequently diagnosed with bilateral adhesive capsulitis (frozen shoulder) and told it was probably all due to menopause and hormonal changes - and the depletion in oestrogen which effects some women in painful changes to their tendons and muscles.

I had a lot of help from some members of this site. My GP refused to diagnose PMR, or let me try prednisolone, but I did go onto HRT. Three months on low dose prempak C did nothing. I then went up to high dose,...and it was nothing short of miraculous. Within one week I did not need pain killers four times a day, and within two weeks I was pain free. In late January this year after months of constant pain in both shoulders, I suddenly realised (literally over a matter of days) that I had less pain and more movement in my left arm. I was beginning to un freeeze. I still did not have anything like full movement back in my left arm, but I had not had one of those killer spasms (that left me feeling sick) since Christmas. Hallelujah I thought, it is over.

Whether this was due to taking high dose HRT for a month, or a natural event that would have occurred In this self limiting condition who knows ...but , here's the thing.

Unfortunately, due to sudden severe migraines for the first time at age 51 - along with some other horrible side effects including sky high blood pressure - I was recently taken off HRT by my GP. (I was on Prempak-C 1.25)

Two weeks after taking my last HRT tablet I began to feel that tell tale tendon pain in my shoulders and elbows. I now have familiar pain in my left bicep and collar bone. I have pain in my lower back and hips radiating into my groins. It is following a pattern I am only too familiar with from last time and I fear I am on my way to another frozen shoulder,Or two. Who knows.

What people without this condition do not realise is the extent of how much it changes your life. Everything is geared toward not causing yourself exruciating pain. You cannot raise your arm past a certain level, so how you dress, sleep and live is drastically changed. it is like living with your arm in a constant sling. The low back pain feels like I want to arch my back like a cat constantly, it is just so sore and never goes away.

I am only posting this in the hope of reaching anyone in peri/menopause who has low ESR, and has been told they do not have PMR.Try HRT if you can. There is such a similarity between the constant, debilitating pain of PMR and frozen shoulder/ hormonal changes due to menopause. In my case, it most definitely IS linked to hormones and estrogen depletion and I am thoroughly p*issed off that I cannot take HRT!

Perhaps prednisolone would help me...but my GP just will not let me have it.

Thanks for listening and hoping you are all as pain free as you can be.

Hello Lesley. So sorry to hear that you're not allowed to take HRT when it had such an amazing effect for you. It is puzzling why your GP won't let you try some steroids - could you ask for a referral to a rheumatologist? These auto-immune diseases can be pesky blighters to diagnose!

wishing you less pain!

Mugwump

And I repeat - on that basis I don't have PMR either. I have NEVER had any raised inflammatory markers - and by that I mean levels of about 5 for ESR and absolutely normal for CRP. An ESR of 5 for a now 60 year old is nothing short of amazing!

Your GP is wrong to say it can't be PMR just because of the markers - he needs to do some reading and I'll happily seek out some mainstream references if required. If he is being so unhelpful you need to look for another GP who is better informed and interested in helping your disability. His job is to help not hinder.

I've just had a bad flare of shoulder pain - not the PMR but myofascial pain syndrome judging by the location of the very painful trigger points, but it followed the most recent attempt to reduce the pred dose from 9 to 8 and developed after about 4 weeks - so I suspect the underlying PMR woke up too. But it brought back all the memories of the pain!

Good luck

Eileen

Thanks for the replies and support ladies. Eileen, I am going to see a different GP.I am also going to try Bowen therapy for my pain which I hear gets good results - it works on the fascia and trigger points. It looks a bit odd - the practitioner only does tiny rolling movements over the muscle with finger and thumb. Friend of mine swears it changed her life by completely getting rid of neck pain. Will let you know how I get on.

Seeing a different GP seems like a recipe more people should follow ;-) I used Bowen therapy for about 5 or 6 years and it kept me going without pred whilst the PMR wasn't too horrendous. The first therapist was brilliant (she also taught it) and for Bowen was pretty violent! I then transferred to one of her pupils who was also very good but there was a little something missing compared to the first one!

I now live in northern Italy and plain couldn't afford it - 75 euros a session, same as seeing a physiotherapist privately Good luck - I'm sure it will help although I found I needed a few sessions on an ongoing basis every 6 to 8 months rather than it providing a "cure". It has been shown to provide stunning results with frozen shoulder so it sounds particularly suitable for you.

BTW - just because you can't take one form of HRT doesn't mean there isn't another one that would be OK. I googled "how many different types of HRT are there" and one link was to the hysterectomy association which suggests a book about alternatives to HRT. Possibly of interest?

Eileen