I have spent hours reading links and references since I found this site. I read Kate's book cover to cover today. I'm beginning to think that I had several symptoms long before diagnosis. I have had chronic back pain - primarily in my R hip- for 30+ years. I had a breast reduction 10 years ago and my back pain improved dramatically. I have seen a chiropractor for most of my adult life. For perhaps the last 9 months I have had "new" kinds of back pain - always the hip but add the other hip, midback and neck. Had a lot of trouble keeping all of this under control. Neck tightness/muscle spasm and my cervical spine being out of alignment sometimes caused migraine headaches - these were controlled WELL with chiropractic - in fact, there were times I walked into the office almost in tears and left pain free, but, I digress. I began taking Carisoprodol as a muscle relaxant (from my GP) to aid rough days or between chiro visits. I traveled a great deal for my high stress job, and was gone from home days at a time. I also started having massages at least once a month. The last 3-6 months I began to notice that although the meds and treatments helped at the time, the relief didn't last long. I developed shoulder pain - on the right shoulder only - and the chiro couldn't bring relief. She sent me back to GP who decided I should try physical therapy. I never went, because my schedule was so hard to meet. Eventually, weeks into the pain, it receded. On Jan 8, I drove an hour and a half to teach a 6 hour class. I drove another 90 mins home...normal day except I had stiffness in my hands which was very odd.... and by 9 PM that night I was in the emergency room with the worst pain I can describe in both of my hands. Was started on 30 mg Prednisone and pain killers and was much better the next morning, and went to GP to follow up. Kept on the Prednisone and pain meds, saw the GP several times over the next two weeks, he played with the dosage at first... had blood work done 3 times including the hospital, and inflammatory markers were getting higher and higher. Pain migrated around (see 'I'm new here' post) and was every bit as severe as the book describes - at times had to have help to eat and to toilet myself! This lasted just about 10 days. Once I saw the rheumatologist and was changed to Prednisolone, my labs improved dramatically and immediately. The pain was almost entirely gone. I seem to fit the "atypical" patient (I guess we all are...) migrating pain, only one shoulder, etc. I haven't seen anyone else with the kind of hand pain I did, but the doc insists he has seen it before and he is quite confident this is PMR. Any detectives out there able to connect any dots I may have missed? Could I have had this for so long and not known? I can't think of any reason they would have tested my blood for inflammatory markers before... so could this increasing back pain/tightness have been the real onset??
Backtracking to see if old symptoms were beginnin... - PMRGCAuk
Backtracking to see if old symptoms were beginning of PMR...
P.S. I have learned over the past several years that my body tends to react to stress immediately following a major stressor - for example, when my youngest left for college, my back went out for 3 weeks... when my parents died within the same 2 week period, I was physically fine until about 2 weeks after - then major back/neck/headaches, etc. The only stressor I can think of prior to the January occurrence were the holidays?
Yes, it is very likely. I'd had similar problems for years - back problems kept within bounds by Pilates, Bowen therapy, osteopathy and massage. The PMR itself was a bit different in that at first I found step classes getting increasingly difficult. Then I had excruciating pain in my quads when using the cross-trainer. It had crept up over a good 6 months. Then the real stiffness started - no abnormal bloods, atypical too, though the symptoms really weren't. It wasn't recognised and I managed it for 5 years the same way.
I also had awful hand pain - like red hot needles along my fingers, synovitis and tendonitis probably. My feet were even worse - like walking on sharp pebbles and broken glass. Hip bursitis as well. That all took about 6 months to fade - but it did eventually. Previously, the back pain had come and gone, but was always lurking.
By the way - you can edit your posts if you want when you forget something - the little downward arrow in the box on the right gives you an edit option.
Yes!!! You are the first I've heard with the hand pain. And I do remember over the past year OFTEN having pain in my feet... Like walking on broken glass... Whenever I got up from a resting position... I would hobble for about 60 seconds and then it would ease. It was embarrassing when I would get out of the car... So over the past few days pain is returning... In my hips and back... So I've been trying to determine if this is a flare. No way to really know without blood work, I guess?
No - a flare is a return of symptoms, if you are taking pred then the blood markers may not rise or be very delayed.
Yes - I had to unfold myself out of the car and putting my feet on the ground was awful for 2 or 3 minutes. Then the trochanteric bursitis started - so I thought I needed a hip replacement in my early 50s! I put my foot on the ground and tried to bear weight - and squeaked. Loudly!
About 4 years ago I developed terrible fatigue that made it hard to function.Sleep didn't help and it was hard to even think. I went on antidepressants and gained 35 lbs. Had no pain anywhere. Put it off to the change and hormones. 2 years later it lifted. I wonder now if that was the beginning of PMR.
The main reason I think I'd had PMR coming and going, so to speak, long before the final critical flare up is when I was on holiday in Egypt. A group of dancers came on the Nile vessel and as part of the entertainment they got us all dancing. Even me, although I wanted to just watch. It involved some sort of swooping down while walking as though scooping something from the floor, and I still remember the pain and how I suffered, trying to do keep up with everyone. This would have been about eight years before diagnosis but I certainly wasn't disabled all that time. Always attributed any pains to osteoarthritis.
In short. I finished work two years ago. Looking back I was very much the same as you and PMRpro. I felt as if I was walking on glass, very painful, I tried so hard to hide it. I worked on the second floor of the office, I was unable to climb the stairs, I had to ride the lift. I had pain in my shoulder and neck. Had terrible/awful pains in my legs and feet at night, I would wake up the same time every night, run cold water in the bath and step in. My back was just stiff and painful all the time. Made me cry quite a lot, in private. Stiff upper lip and all that. I visited an osteopath and had aqua therapy, all private, they said my pelvis was out, I paid an absolute fortune. When I did visit my GP, quite a while before I left work, he said he couldn't see anything wrong... If only I had gone to a Dr who had some knowledge of PMR. I thought, or was made to feel, as if it was in my imagination and I was making a fuss and attention seeking. I had never heard of PMR or GCA, I worked closely with my GP's for 12 years 10 years ago, admin side, never did hear of this condition mentioned in any correspondence.
I still feel as if I'm making a fuss, even thought some days are just dire, don't know why, feel embarrassed to say too much to anyone, probably because the same as many on this wonderful forum have said before, I am told "you look so well, you will get over this, just get up and get on with things"; including my demanding Mum...
I believe this all started at the age of 50, I'm now 63
I now have PMR and GCA, started on 60mg of Pred, felt fantastic apart form little sleep and fatigue for a while. I still have headaches, hip and back pain quite often, my night legs and feet are a lot better though.
Thank you all for listening to me rant on.
Please don't leave me 
keep on writing
Wishing you all the very best.
Kindest regards
Marion
I do understand where you are coming from. Other than my immediate family, I don't really talk about it, either - altho to be fair, people have been kind and supportive even if rather confused. I'm not a good patient, and I know that - so I have tried extra hard not to seem ill - and my sister said to me one day after attempting to spend a day out - "what made you think you could do that?" I think sometimes they see it more clearly than I do! So I'm still bouncing back and forth and trying to find my own limits, (which do seem to change day by day!) and perspective. The posts written by Benjamin (his moniker escapes me) really hit it right on the head. I am having to completely recreate my self image, and value - and realize over and over that how much I accomplish does not equate self worth.
Thank you.
Yes it is like bouncing back and forth. Trying to find and understands one's limits when our condition changes without warning is very challenging.
This forum and the lovely people with their posts who offer of support and advice really does make a difference and keeps me buoyant.
Kind regards
Marion
Thank you for the kind mention, Zacsmimi, I just stumbled over it by accident (story of my life!).
Well, I'm not an alternative therapist (some here would say more of an alternative comedian.. 
). But I do think that our psychological profile / 'type' has at least some bearing on how we adjust our self-concept with these things. For example, the more 'Driven' we are as individuals, the more challenging it will be to lower / find new horizons and interpretations of 'achievement': and so on, for the other broadly defined 'types'.
As a physical and career-wise 'Action Man' traditionally, I've had to go through the psychological pain barrier with PMR, as much as the physical one. Shock, frustration, anger, resentment, impatience, denial, you name it - text book Kubler-Ross stuff!
But I've learned that, like a coin, adversity has two sides: and for me, one of the bonuses of PMR is that, even if not so fit and strong as before, I now have the time and (usually just enough!) mental energy to do more of one of the things I love most in life - writing. Lesson for MB? Find new sense of achievement by using creative muscles more than physical ones.
Now, where's that latest John Wayne Story...? 
Mark
Don't worry - not planning going anywhere soon! Though I am off on holiday next week for a month - no idea how much internet access there'll be for the first 2 weeks!
oh where are you going - for a WHOLE MONTH??? how very exciting...something to look forward to!
Canada for a 2 week tour from Calgary to Vancouver (where we are having a PMR support group meeting) and then a cruise up the Inside Passage to Alaska. Back to Vancouver for nearly a week to the PMR friends and then a science meeting in Chicago. We have to go to Chicago but have been there before so have added the rest on while we are already almost there (relatively speaking!). I was in Whistler for a meeting a few weeks ago - typical, I've wanted to go to western Canada for years and suddenly 2 opportunities come along at once!
Enjoy, PMRpro! Look forward to having you back here again soon
Hi, I started with pain in my neck over twelve months ago and was given naproxine, this lasted for seven months and was due to see a Rheumatologist in Jan. 2016. In Nov. 2015, I got enlarged artery's in my head, jaw claudation, visual disturbances (a shade lowering halfway across my right eye) and went straight to a&e and was put on prednisolone 40mgs. per day, the effect was dramatic, the artery's reduced in days, everything else got better. I had a biopsy of my temporal artery which came back non-specific. Things were going fine till I got a chest infection which lasted a while, my blood tests went up and haven't come down much since, I went from the 40mgs. of pred. a day down to 20mgs. then to 15mgs. I just went up to 30mgs. after the chest infection, now Iv'e gone from 15mgs to 20 mgs. This is in the space of 7months. I also have scolliocis which they found after a chest x-ray but which has hardly ever bothered me. I got a terrible pain in my back which my g.p.put down to the androchloric acid tablet which I take for my bones, he changed it and it has been a lot better, like you back pain is a constant worry.
What a horrid journey.
(I'd forgotten about the months I had with jaw pain on eating, thinking it was a tooth problem and the curtain across the top of my eyes.)
Back pain is very wearing isn't it, I do sympathise.
Thank you for keeping in touch.
Kind regards
Marion
Thank you Marion7, I didn't say that I was called back for further blood tests on 3rd of may, then on the 24th I got a call to see the Rheum. about my bloods. (why the long wait I'm not sure as they get the results in days I understand) then I was told to have a PET-CT scan which wasn't really explained so I read up on it and it filled me with dread, I have had it and now am waiting again!
Some tests are done in days - if they have included some of the fancier rheumatological marker tests they can take up to 2 or 3 weeks.
PET-CT is mainly used for cancer detection - because it is very expensive and there aren't as many centres that have the equipment so there can be long waiting lists. But it is ideal for rheumatology and vasculitis problems like PMR and GCA and will be recommended in the future as standard for more complex cases. Being sent for PET-CT doesn't mean they think you might have cancer - but I bet it is mostly that where you found it when you looked for information?
Thankyou.
PMRpro, thanks for your help, I just googled pet-ct scans and read what came up, I am mystified what I read on these forums, not having a lot of experience of pmr or gca. I seem to have tapered rather dramatically over 6 months, I went from 40mgs of Pred. to 15mgs in 4months, this was after the chest infection, after which my blood esr and crp went up after only just going down.
Yes, chest infections will send both ESR and CRP up, to very high levels sometimes. Your reduction isn't too fast if you were OK and the PMR/GCA symptoms didn't come back - but slower is better as it isn't as much shock to the system and less likely to cause trouble.
Just ask when you don't understand something - someone will find an answer. Don't ever sit there worrying about it without sharing your fears.
The rheum. said they like yes or no as an answer which isn't always east to do, I am a bit overawed by the process as I was active and fit before, (I meant to say easy to do),I was led to believe that the inflammation was fine but when it went back up I was only told to take one extra pill of 5mgs. I then got a numb big toe which I was told had nothing to do with the disease, so all in all it is a bit of a mystery. Thanks for your reassurance.
You can't blame everything that happens on PMR and/or pred - it might have happened anyway.
Your rheumy may like you to do his job for you - but unfortunately yes or no is not something that you find a lot of the time in medicine. So maybe he needs to find a different career - like being a computer programmer where it is yes/no. They are beginning to realise that algorithms don't always make the right decision when health is concerned...
PMRpro, sorry to bend your ear, I can go on a bit. I dont doubt that the toe thing is due to something else, as for the registrar who sees me, he is I think he is o.k. I took it to mean that hr didn't want me waffling on too much, I apologised and he said it was o.k. I like to explain things in case I miss something out, thanks for your input.
I was diagnosed January with what seemed textbook PMR. I had an ESR previous November of 3 and January one of 49. Also very good response to preds. This is possibly why I reduced quite quickly and relapsed but trying again and this site really helpful. But the relapse made me think much more about all symptoms and diagnosis. I am convinced I have PMR but I wonder whether it really started a couple of years ago and intermittently waxed and waned before the classic acute presentation.
Trouble is that the medical profession still knows so little about this disease . All the experiences of fellow sufferers help. Good luck Patsy 6
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