I was at last diagnosed with PMR yesterday after some years now of being in excruciating pain each and every sleepless night and a few periods when I arrived at destinations to find I actually couldn't get out of the car. As you can imagine it was a considerable relief at getting this diagnosis and treatment plan. The thing is when the Rheumatologist had been through my historical tests in front of me, read my medical record and listened to my story it was just blindingly obvious what was wrong and for the first time the explanation she gave for her judgment I thought "yes that is exactly what it is like".
Obviously I was treated in the past. The orthopaedic surgeon I was referred to gave me cortisone shots in my shoulders which helped for a couple of weeks at a time but couldn't be repeated for 6 months. The neurophysiology department gave me shots in my wrists for carpel tunnel syndrome. I had endless agonising physio. I was prescribed allopurinol because my urea was slightly raised and it might have been a very rare presentation of gout as my spine wasn't painful. This was odd because two years later it was attributed by a neuro surgeon to 2 prolapsed discs in my neck and these were urgently replaced. My GP then dismissedvall my pain, stiffness, cramps etc to nerve damage from my neck and shovelled max doses of Naproxen down my neck for years,which dI'd ltitle for me. About 7 hours after taking my first dose today I started feeling noticably better at last.
I just wanted to say thank you to all the people who responded to the newbie who introduced herself yesterday because I learned so much from them. Like anyone ese I am trying to re-orient myself to my condition. Your comments are so useful. It is also good to be in contact with others who are going through what I am. Thank you.
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Dasein
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Well, I sometimes feel hard done by because my conditions weren't diagnosed until 4 months after I became ill. Reading about your experiences makes me realise that I was very lucky. That dreadful pain and stiffness I experienced for 4 months was more than enough for me. I know PMR isn't that common but surely it isn't so unusual that doctors can be forgiven for not knowing about it.
A least I didn't lose the sight of an eye! How awful. Has your sight returned?
Thank you for your mesage. For my own part I am disappointed with my GP. As his title suggests he is the generalist and knowing what I now know it is surprising he was aware of all my symptoms and didn't recognise a possibility of PMR. The others were all specialists and from within their own practice boundaries the symptoms they saw were commonly associated with problems within those boundaries. I've had my rant and I am just glad I now know what's wrong and that there is at last a credible plan for it.
Fortunately I didn't lose my sight although I had GCA as well as PMR. However finding out that sight loss had been a possibility didn't exactly endear my GP to me or give me confidence in his abilities.
I have read your introduction to GCA/PMR and it is really helpful and informative. I can see I will return to it again. I took the liberty of reading it to my wife so we both have the same understanding of where we now are. Best wishes.
Good. Very often spouses and families don’t understand what we are going through - and that’s understandable. But if they understand a little then that helps us - the patient.
Good luck, and please ask anything, anytime. You’ll always get an answer - you might not always like the answer - but you’ll always get one!
Welcome Dasein 🌷
What a journey to arrive at PMR in the end!
Just take your time now & let the Prednisolone start to do its magic.
Remember it’s not a cure but a dampening down of all the inflammatory symptoms. I remember the day clearly when l could put on a high heeled shoe again & more importantly dress myself!
You’re bound to think of lots questions, so go ahead & ask, there’s always someone around who can help.
Welcome to the forum Dasein, glad to hear that you now have a diagnosis. Remember not to do too much when you first discover you can move without pain.! Nearly all of us have done it at the beginning and some of us have done it even though we know fine well what the results will be!!
Remember if you have any questions there is usually someone around even in the early hours!!
Welcome from another longtermer up to diagnosis, which I eventually made myself! In the 5 years I sought an answer for the symptoms I saw a GP who was hopeless - "the bloods are OK, there can't be anything wrong" - and a rheumatologist who said it was OA, she could "feel it" in my right knee. Imaging last summer showed there is NO sign of OA, some 14 years later! The GP in the practice who did recognise it was part-time and building her family so was on maty leave a lot.
However - it will improve now! But I refuse now to compromise on dose. I had enough wasted years then - not willing to allow pain when there is a way to manage it.
Welcome Dasein. It’s such a relief finding people who speak the same language! The shared experiences on this Forum are so very useful - very glad you found it!
Hi I was diagnosed almost 2 years after first visiting GP with symptoms. At one visit one of the GP actually said “we are not designed to sit on our ar*** all day. After one clever GP sat and looked at all the blood tests he diagnosed me on the spot. Did the 2 specific blood tests and now have been on steroids for a couple of months and feel like a new woman 😃
Welcome from me too, Dasein. PMR isn't the easiest thing to diagnose right away: seems like doctors go through an elimination process with more obvious possibilities being dealt with first. I was diagnosed with arthritis, 'flu, toothache- you name it- before I researched my symptoms for myself on internet and showed my doctor. I was lucky with her- she checked it out immediately and we went from there. In my case it was PMR and GCA so feel very grateful my sight was saved. Finding this forum was the best thing ever. Stay tuned!
My goodness you have my sympathy! Some of us are just lucky, as the very first time I went to my GP and described my symptoms - much the same as yours - she said " I think I know what's the matter with you", and went on to give me a leaflet on PMR, as well as getting blood tests and setting me up on prednisolone. The initial visit took all of two minutes!
At least now you seem to be getting somewhere, and hopefully the prednisolone will do its work.
Make sure you keep in touch with this forum - it's where you should get all the help you need. I'm over four years down the track now and on 2.5 mg daily.
Hi and welcome to our club - even tho’ we didn’t really want to join!
Whenever I read posts such as yours, I thank my lucky stars my wife persuaded me to spend the money on a private consultation - diagnosis took about 20mins...! The symptoms were pretty much identical to yours, seemed to come out of the blue and the GP never came up with suggestion of PMR, only physio - I’m glad I didn’t go down that route......
Now that you’ve had a diagnosis and getting pain relief via the meds, remember it’s usually a long haul - I’m 3yrs in and down to 2mg Prednisolone per day - it’s best not rush into a fast taper, notwithstanding what your medics might prefer; it’s your body and you know how you feel!
Anyway, best of luck with the ‘onward journey’ and there are longtermers on this site who’ll always give you the best advice (they’re usually ladies and laden with common sense- unlike we blokes...!)
Thank you all for the kind greetings and good advice. It means a lot to me to be in touch with people like us sharing your own experience and what you have learned. I do find it a tad scary right now and your support is really welcome. Anyway last night I was a little unsleepy and woke up a couple of times BUT the difference in the level pain was extraordinary! Not once did I wake trying agonisingly to reposition my limbs and this is for the first time in some years. Thank you again and best wishes for your own journeys.
Welcome Dasein. As you say so wonderful that when you woke in the night you didn’t experience the pain like you were having. It’s so debilitating!! Sometimes this journey is a bit like swings and roundabouts but we are all in it together and understand, which is so comforting
Welcome. I am so glad you were finally diagnosed correctly. I was lucky. As soon as I saw the doc, after a month of pain that I thought was from my bike accident... he knew just what it was. I am SO sorry you went though all that. But what good news you are now diagnosed and believe me this forum will be a life saver... from forgetting pills to traveling to sleeping to hair loss whatever may happen everyone is here to help. AND they do!!
As a relative Newby, diagnosed last December, I can relate. Thought I was doing quite well had tapered the miraculous/terrible prednisone to 7mg. but then Wednesday had a nasty setback. I was taken to the emergency after awful throwing up and worst diareah. Actually had fainted and fallen. I found I had gastric ulcer. It could have been brought on by the prednisone, I was not always taking it with food, I would be in a hurry as I wanted to go walking, so would just gulp it down. I do not know if others have had a similar experience, but believe this is a warning. Fortunately I did not need surgery. The gastroentorologist believes it is trying to remedy itself, so I am taking some medicine to "calm" the stomach acids. I was in hospital for little more that 24 hours, while procedure was done. Now home, had good night sleep, amazing, miss my dog (Kathryn my daughter keeping her), walk is more like a hobble, but managing. Live by myself, but have good nearby. Hope all goes well with you. Sorry for the morning ramble.
Thanks so much for reply, Yes, I was so pleased with progress. Earlier Tuesday morning I had gone for an almost thirty minute walk on the paved river trail. Despite the high humidity, I was pleased with being able to do it. Then mid-morning, thought I might have eaten something which did not agree with me, so cancelled my volunteer work at library. A few minute later, while trying to get a glass of water in the kitchen, "all hell broke loose." Fortunately my daughter lives ad works close by. Don't' know what I would do without her. Thanks once more for the kind words.
Good Day so far. Doing the normal house things, just very slowly. Keeping a record, not in the old haphazard way. This evening my daughter is going to bring Lily along with her dog Noelle for a visit. She will make a good veggie pizza and I may have a sip of wine. Hope the humidity and heat will decrease so we can sit out on the deck. Your posts certainly help keep up my spirits !
Hi Noosat, I hope you are feeling better now. I think what I am learning is that the treatment and advice given has to be respected in a way I am not used to. It seems to be quite unforgiving. Doubtless you will quickly make up for this setback.
Thanks for the post. My good day did not go as planned, unfortunately. Think I overdid the hobbling around (I am a compulsive personality) So to-day I am back down. My daughter came to make toast etc. and make sure I am OK and will be back a little later. Another lesson learned. Most of my aches and pains could be from falling, fainted, before going to hospital. I will just have to bear with my fat lip, aching ribs, back and shoulders. These are temporary pains not like that old nasty PMR. I do miss Lily, my dog, but I know it is best she stay away for at least another day. Maybe the old body will allow me to watch the women's soccer in France. My son Leslie is there on business and managed to get a ticket. I hope you and all these good people on the site are having a perfectly lovely day.
I also suffered for 5.5 months prior to diagnosis. This brought great relief on many levels....it put my mind at great ease (thought I had MS or something worse), I finally had relief from painful PMR symptoms, and joining this forum meant I was not alone and these folks are filled with wisdom. It’s been just over a year now since starting pred and I’m happy to announce I’ve experienced only a few side effects that I I’ve “managed” well.
Acceptance you have a chronic illness brings peace as well although it can fell overwhelming especially in the beginning.
Hoping you fair ok moving forward and feel free to ask us anything. Information/knowledge is key, especially when navigating medical waters. Advocate for your health and healing.
Thank you. You put what it feels like well. It is a relief to finally know but as you say very daunting. I do feel much better in terms of pain and that makes it much easier to come to terms with and I am overwhelmed by the kind welcome from this community.
Welcome , Dasein. I sympathise with you're journey . I think I had PMR for well over a year before an acquaintance diagnosed my condition . My GP and physiotherapist put my symptoms down to old age - even the carpel tunnel didn't ring alarm bells . When you start to taper please follow the tapering plans of either Dorset Lady or PMR Pro . A lot of rheumatologists try and get you to taper too quickly and many people end up having flares. I wish you well on your journey !
What a road to get here! Just want to welcome you and confirm that you are in good company. Everyone here knows exactly what you mean when you describe getting yourself turned over in bed. I could feel it as I read it! Heed the advice of the pros and take it slow and easy. Impatience is probably our biggest enemy - all in good time. Enjoy the relief that you had come to believe would never happen again. We celebrate with you!
Thank you Clieder, I don't really know my rheumatologist well having met her once. It seems that developing a good relationship with her is key to being able to carry out much of the good advice I have been given by this my new community.
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