I want to ask you how you dealt with the pain of PMR before being prescribed prednisone as when I look back at those incredibly painful and debilitating symptoms I had I wonder how I manged to carry on.
My story was I was off on my holidays to Turkey and my knees were beginning to feel so stiff and painful at the airport. By the time I got to the villa late at night and made my way to bed, I started to feel aching in my elbows. By the morning I woke up and the pain in my shoulders had also started and the stiffness was intolerable. I was getting up at 4 am as could not sleep and trying to make my way downstairs and slowly trying to move. This was a family holiday with my son, Mum and grandson and to say it was ruined was an understatement. The pain increased as the 2 weeks went on and the potions I was buying from the pharmacy did nothing.
Returning to the UK was such a painful time and getting off the airplane made my symptoms intolerable. I was walking like a 100year old with arthritis, pulling my case and trying my best not to give up as the pain was making me cry it was that bad. That was July/August last year and was not diagnosed until September when finally given steroids.
Looking back is a painful reminder but pleased my wife made a couple of videos pre-steroids of me trying to make my way down the stairs and trying to sit down. Those memories will never leave me and when I hear of others diagnosed with this horrible disease I wonder what their stories are like and if similar.
Thank you all to this fantastic group.
Written by
Markandevie
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includes how I dealt with the first 5 years of PMR with no pred! No idea how I'd have fared without the local Bannatynes gyms - and a car to get to them. If I couldn't drive, I couldn't do it.
My God, I didn't know your story PMRpro. What a traumatizing experience you had. I don't know how you did it. I could not have done it. My pain was so bad I wanted to die.
What did you do at Bannatynes gym? Was it the warm pool and water aerobics?
I hear you. You must have been in very good shape all your life to tackle all that after getting PMR, not to mention no medication. I love swimming and do light pilates and very light yoga. I just get worn out fast.
"You must have been in very good shape all your life "
Er, no, not really!!!! I'd started exercising with a Rosemary Conley class and built up via similar level council classes before finally joining a gym - I hated the machines though. Then PMR started and what I'd been doing got too hard and I looked for a gym with a pool and aquafit. The instructors also did Pilates and yoga and encouraged me to try and adapted stuff for me. They were wonderful, both of them. Kept me skiing a lot longer than you might have expected.
That's fantastic. You worked hard to keep strong. A pool and aquafit sounds like a dream. I actually snow skied last month for the first time in about 10 years. I didn't do it very long but it was fun and I was very determined to do it. Thank you for sharing your fitness recovery!
Not recovery - that was during the years I had PMR without pred. There is no way I could do that now - but that WAS more 15 years ago, I'm over 70 now. I gave up skiing a few years ago but not only because of PMR - even living here, it is extortionately expensive now and far too many poor skiers making it dangerous.
Recovery was definitely the wrong word. Sorry. Yes, same here with the skiing prices in Northern California. It's insane. We couldn't believe how much it has gone up. The day we went, there was hardly anyone on the mountain. I would have been so nervous if it was crowded. Too dangerous for me.
I had undiagnosed GCA for 18 months -and the last few months painkillers and ibuprofen day and night -and keeping a diary to make sure I didn’t overdose. ..and a lot of crying in pain when I tried to do much..
Makes me wonder why they are so hesitant to diagnose. It took a CT scan at the very end to diagnose me after ultrascan, xrays and whatever. Did your sight recover?
Problem was she tested ESR at beginning - and it was deemed satisfactory - it wasn't - as I now know, neither did I know then that aren't raised for everyone. Long before I found this forum, and I was a carer for my hubby, so maybe didn't do enough research - and it was 14 years ago.
No, sight was irrecoverable - but life goes on - as you can see from this [no pun intended] -
I was shocked and angry at the very beginning… but thought there’s no point in getting bitter about it. That’s just counterproductive and is making my life and others around me miserable - so get on with it. My late husband was ill at the time, so I didn’t really have time to wallow in self pity - not that I’m that type of person anyway.
As I said in post, it doesn’t stop me getting on with life… or enjoying it , so ce la vie..
I don't know how you survived 18 months with GCA and no pred. I shared with PMRpro that I told my husband that I was going to go to a suicide clinic if we didn't get this figured out asap. My pain was so intense that I couldn't live with it. What a tragedy it took so long to get a diagnosis for you. I'm very lucky my orthapedic surgeon knew what PMR and GCA was. He saved my life.
Not nice pre diagnosis - in fact horrible pain, which I reckoned much worse than the first few days after a hip replacement.
All the usual symptoms, but the one that sticks in my memory was being unable to reach out to take a glass of wine at Christmas!. Didn’t get diagnosed till the New Year, and went straight to a coffee shop from the pharmacy to gulp down my first dose of prednisolone.
Started about three months pre diagnosis. Thought I’d damaged a shoulder at first so was seeing a physiotherapist; then it was both shoulders, and the physio said you’d better see the doctor.
Very similar to my own. Suspected an injury first then arthritis in my knees. Didn't seem interested in shoulder pain s just said probably lifting too much!! Thanks for the reply
Looking back I don’t know how I managed to put up with the pain. I remember not being able to move in bed without pain and even lifting a fork to my mouth was agony. A real nightmare part of my life.
Pretty much the same Markandevie. Started by couldn’t lift my leg off the bed, a couple of days later I couldn’t lift the other leg. I was dragging my body up by grabbing the headboard. By the next day my arms went and I felt like rigour mortis had set into my body,the pain was horrendous. Getting dressed made me cry. Went to the doctors, couldn’t sit down in his surgery. He took one look at the state I was in and said Polymyalga and put me straight onto steroids.In one way I was lucky to have it so badly and all over my body as I was diagnosed immediately.
I was diagnosed with PMR after 6 weeks of stiffness and agony in my shoulders initially, which later went to my hips. I couldn’t get out of bed , and when I eventually made it downstairs and took paracetamol and ibuprofen,just walked around the house until the stiffness got a little easier and I could get dressed ( usually a couple of hours). The pain in shoulders felt like I had broken glass in the joints, and I couldn’t lift my arms more than a few inches from my side. I’ve never felt pain like it- I couldn’t think of anything else. 2 days on prednisone and the pain was gone and I could move again, never felt happier. A very traumatic experience which as you can tell is still vivid in my mind.
Guess I'd had it for a few months before diagnosis, but had put it down to my OA. Ended up carried into the walk in centre, all joints absolutely agony and could hardly move. Hospital didn't get the diagnosis right told me I was having an OA flare, I knew that wasn't correct but was in too much pain to argue. When my own doctors saw the blood test results and hospital notes they diagnosed it instantly and have been brilliant ever since.
I really sympathize with those of you with PMR. I can’t imagine what that felt like. I would have been terrified since I never heard of PMR and would have had no idea what was happening to me. I have GCA. Even though I knew something was drastically wrong with me, I really didn’t have pain. I couldn’t function either but for different reasons. I know GCA can have serious complications, but I really give you credit for continuing on.
I only wish the best for all of you (including myself) for having to deal these terrible diseases. Even though I hated what prednisone did to me, thank God it exists.
It took from October 2009 till July 2010 for me to get onto Pred. The trigger that started it all was a bout of the flu that I caught from one of my work colleagues. It was far worse than any flu I could remember, and I was off work for a week and a half, when normally I'd have been back after a couple of days. When I did go back I noticed that my back seemed to ache rather a lot, and no amount of fidgeting seemed to cure it.
For the first three months the backache just got worse and worse and I assumed it was something to do with aging as I'd just turned 59. I started taking painkillers and although they didn't do much, they did help a bit. Initially I tried paracetamol, but they did nothing, so then I tried CoCodamol with Codeine. That helped a bit, and I found that taking them two at a time was enough to give me some temporary relief from the worst of the pain, though it did nothing for the stiffness.
By the Christmas I was using a walking stick when commuting to work and back and I remember the ratcheting of my back as I tried to stand up in the bus to get off it and slowly hobble to the station (my commute consisted of a 400mtr walk to the bus stop, followed by a 3 mile bus ride to the tube station, followed by 2 different tube trains, and a further 400mtr walk to the office building, and the same in reverse going home).
I also noticed that as I was aware that every step I took would hurt, I became increasingly fearful of movement of any kind. It almost became worse than the pain itself as I tried to force myself to move to do even normal things like put the kettle on, and I became absolutely terrified that I would fall and not be able to get up. I remember that Christmas sitting in great discomfort as the family opened presents, and wondering if this would be how I'd spend the rest of my life.
In the February of 2010 I had to go into a local hospital for a hernia operation, and my wife had to drive me there as I could no longer get in or out of the car to drive. However, the following morning when I woke up from the operation I found that my back pain had gone and all the stiffness with it. Sadly that only lasted as long as the anaesthetic was in my system. As soon as it went my body siezed up again.
My missus then dragged me to the doctor and he put me on a diclofenac. That had an instant effect and lessened the stiffness and pain enough for me to function again. However, the pain was still there and the codeine painkillers weren't doing much, so the Dr referred me to a rheumy at the local hospital. From there it took till July for the rheumy to put me on Pred.
He told me that I'd be on steroids for years if he put me on them, so he didn't want to do so. However, after several months of no improvement, and me having to come off the diclofenac as it had been withdrawn due to stomach problems it was causing others, he finally admitted defeat and put me on 15mgs of Pred.
The first day I took those 15mgs of Pred I found that within a matter of hours I could walk again without pain or a walking stick. Furthermore, the fear of movement that had been crippling me was gone as well. Since then I've had a bit of a bumpy ride, having had GCA twice, but that's another story. Oh, and I'm currently on 3mgs of Pred per day, after more than 13 years, so the rheumy was right, I have been on steroids for years (thank goodness!), and I shudder to think how my life would have been without them.
Did he suggest any timescale for the NSAIDs? Given their potential adverse effects when used chronically, I find the terror of pred bewildering. I've been on pred 15+ years with few identifiable problems - some I know were also due to PMR since I had it for 5 years without pred and that allowed a good comparison. Recently I had some pretty intractable pain - I could just about manage it with a single dose of ibuprofen, nothing else touched it, but the Pain Clinic had a hissy fit but also refused to do what I was pretty sure would work, a steroid injection in the sacroiliac joint. Luckily my wonder rheumy did it and I discovered last week that the rehab rheumy would have offered too. They are the only two who seemed to take me seriously when I said how bad the pain was.
Unlike you I can't take Ibuprofen. I took one tablet and had instant (and very painful) stomach cramp that lasted hours. Never again!
As for the NSAIDS, this was back in 2010, and I knew nothing at all about PMR. In fact it wasn't until the July that the rheumy even put a name to the pain I was suffering. When he did he didn't call it PMR, but referred to my pain and stiffness in some rather wishy washy terms that included 'rheumatic', 'polymyalgic' and something 'opathy'. I can't remember what they were exactly, but my GP was not impressed when he read the letter the rheumy had written him.
It's only in the last 2 years or so, since I've been on this forum that I've learned anything about the illness I've been putting up with all these years. Prior to that I had only the GP to refer to, and they changed like the weather at our surgery, so it's not been easy getting any consistency of care.
To be fair - PMR isn't the disease, it is the name for the set of symptoms and a range of disorders can have a "polymyalgic presentation" including several forms of inflammatory arthritis. And they tend to disdain a dx of PMR - think it is beneath them, Shame the GP is so variable though
Don't think I did manage. Kept on doing physio exercises and a bit of yoga, and for the first half year was still working. But as time went by matters just gradually got worse and worse until I thought I'd have to give up driving, couldn't turn my neck enough to shoulder check, and still remember the evening it took me a half hour to get up off the floor after doing my exercises. Getting out of bed became a slow, painful, four-step process. When I realized how much weight I'd lost thought I was dying, and that was when I finally got a doctor who probably instantly realized what was wrong. About 14 months of definite PMR symptoms, but now that I know a lot more it seems evident that something had been going on for many years because, approaching PMR remission, some long experienced symptoms always blamed on osteoarthritis (specifically morning stiffness) have not come back.
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