Recently I asked the same question for GCA stories. It was so successful I am asking the same for PMR.
Please include information about stiffness and pain - were they the same or different considerations. How did you perceive your pain - could you have assessed it using a 0-10 scale? What would you have used as the comparator? Were there different pain aspects: (almost) permanent low grade pain for example, or short lasting more severe pain? Was it the pain or the stiffness that limited you in what you could do?
Again, please could we keep this just to the stories with a minimum of other comments. Remember this will be a reference for others who are new to PMR and GCA.
Thank you all.
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Hello from Calgary ! So glad to see that you are continuing to share your time incredible wealth of knowledge and now - moderating!
My PMR began in August 2013 at age 55. I awoke with a burning sensation between my shoulder blades and stiffness in my shoulders and hips. As a nurse I immediately knew it was inflammation because of the burning feeling and bilateral stiffness and aching. It continually got worse, and I began walking like a 90 year year old. Stiffness was hardly bearable , particularly when first getting up in morning. I started googling myalgia because I knew it meant muscle ache. PMR came up - a condition I had never heard of, and I knew after reading the symptoms that this was what I had.
My Doc of course said no way and I told her I needed bloodwork and prescription for Prednisone , promising not to take the Pred until bloodwork was drawn.
The pain had become almost unbearable so I would say pain and stiffness was equal at about 8/10. I filled the Prednisone prescription before heading to the lab for bloodwork and as soon as my name was called, I swallowed 25 mg of Prednisone. Within an hour I was pain and stiffness free! It was like a miracle. I quickly reduced to 15 mg and then very slooooowwly reduced.
PMR burned out after 4 1/2 years but I adhered to the DSNS pred reduction, which I cant recommend strongly enough!
Hello from Ontario. As a long time marathon/half marathon runner and nurse to boot I was dismayed to suddenly be hit with extreme bilateral hip stiffness following a holiday in CostaRica...I could barely move around and felt like a 90 yr old!! About a month later I presented at Urgent Care and after 5 hours of intense scrutiny I was diagnosed with PMR and put on 20mg prednisone right away......within days I was a lot better........I am on tapering doses and now walk 3 miles a day (albeit very slowly)...any advice out there about whether my goal of returning to half marathons/tennis is unrealistic???????
Would you mind if I asked you to repost this as a reply to the original post rather than a reply to a reply. This thread is meant to be a collection of PMR stories - I would move your reply but it would appear as from me not you!
And if you have a question, please start a new thread - just repeat your reply. Then people will see it and reply, they are less likely to here.
Started 2 years previously with sever pain in hips noticeable when trying to rise from a kneeling position ,pain in neck became noticeable as well. Treatment from Chiropractor with no relief .
18 months later unable to rise from a low chair ,over the next few weeks became aware of stiffness in rear of thighs only painful when bending , July woke up one morning unable to get out of bed due to stiffness and pain, self care was almost impossible due to pain and chronic fatigue .No muscle strength and extremely week only relief was sitting in a chair or lying in bed without moving. Shoulders stiff and painful unable to get dressed 10 weeks of this going to GP most weeks and seeing Chiropractor on a regular basis .
Mental Health assessment due to GP telling me I had Chronic Fatigue
Counselling twice a week who gave me the impression it was all in my head so I could be off sick
Physio no help
Finally appointment for Acupuncture with GP in practice confirmed my self diagnoses of PMR.
Onset of symptoms suddenly overnight beginning mid-Dec/17. Pain presented in and behind my knees, hamstring, quads, hips. During 6 months pre-diagnosis, stiffness in the a.m. extended to longer periods, difficulty rising from sitting position, getting out of car, off toilet. Pain ongoing in leg muscles in knees was 7 out of 10. No relief from taking 1000mg of coated Naproxen for 6 month, nor Tylenol. Legs and knees felt swollen and tight and limited abilities progressed over those months.
Onset of bilateral shoulder and neck pain and stiffness in April/18. Limited ability to walk even short distances. Pulled tendons behind one knee. Dependent on OH for help getting dressed, shower/shampoo hair, etc.
Diagnosed with PMR by GP after ESR elevated and CRP high. Started 20mg May 1/18. Relief within 24 hours. One flare due to rheumy’s taper. Niggles of pain up head from base of neck occasionally, like inflammation breaking through. Sensitive scalp in a few places sometimes, but no other GCA symptoms. Currently on 8.5mg pred.
In 2014 i had a torn rotator cuff and broken ribs from a fall. A few weeks later my right bicep was excruciating following the line of a vein (10) dr said torn from the fall, but this was 3 months later. I always felt i had a low grade fever during that period and the following years.
Then in 2015 i found my hands and feet being swollen, stiff painful and hot. I could barely walk some days. Then i struggled with aching thighs that were burning. This lead to the frankenstein walk on waking, standing up, getting out if the car and so on. I couldnt raise my arms up to undress, they wrre painful and stiff. My neck started to get Totally immobile in November 2016. I had physio but it got worse and worse and i couldnt raise my head without dizziness and nausea. Eventually my legs, arms snd neck were painful and almost immobile. I was 55yrs. My neck at 10 on the pain scale. Legs at 8 to 9.
Finally went to Dr in June 2016, who said ,"your shoulders are stiff??". I said yes. She said it might be poly might grew her mat tickle...or something like that....she gave me a months steroids, said come back in a week and before i left i had a blood test. Got my prescription and took 15mg. Within 4 hours i could move my neck for first time and my pain and stiffness reduced from 10 to 6). Been up and down since then, some stiffness now and again- fatigue my main enemy at the moment. 6mg with dmard dx June 15 2016
Well I was diagnosed as atypical PMR so perhaps my symptoms will sound odd! I was a dedicated hill walker and my neck shoulders and upper back hurt a lot when I was walking. However pain was cured by rest and muscles only hurt after or during use. I had no pain or morning stiffness such as others have mentioned since rest cured the pain. If the walk was strenuous enough my hips and back joined in. I tried osteopathy as well as physio but only limited help. Finally I asked to see a Rheumy who gave me a steroid injection with miraculous results. It all came back when I caught a bad cold a few weeks later though. Rheumy diagnosed PMR and put me on 5mg Pred. No help at all! When I complained he put it up to15mg. Still not enough but told me 20mg was ‘ way too much ‘ ! I tried 20 anyway and although not completely pain free it was much better. Since then (2016) I’ve been reducing. Up and down a bit with flares, and never got below 8mg. The pain was a nagging ache about 7 out of 10. Now under control but I’m still stuck around 8 or 9mg after the GP put me up to 30mg for a chest infection in February this year. I’m hoping to reduce by1/2mg monthly and avoid Rheumy’s threat of MTX. Current dose 91/2mg and pain free. PS I’m female, now 81 and barely able to walk a flat 4 miles! (Old age ugh!!!)
My journey with PMR, may have begun more than 12 years ago in 2007, but the diagnosis was officially made in March 2014. For the years prior to diagnosis I had undiagnosed bilateral issues with my legs. They were dead weights and I had a lot of problems walking for any great distance without discomfort, going up stairs, getting in and out of vehicles, etc. were problematic. I guess I would call this stiffness rather than pain, and severe at times.
In early 2014 both shoulders became very painful. I was unable to raise my arms above waist level. An emergency room doctor diagnosed strained rotator cuffs and prescribed anti-inflammatory medication, Tylenol 3, and a muscle relaxant. The medication did nothing to relieve the pain or the problem.
The following week my upper arms became so painful I couldn’t lie down in bed and I had to sleep in a chair. I made an appointment with a Nurse Practitioner, at our local Medical Clinic. The NP immediately questioned the diagnosis of torn rotator cuff and ordered a variety of x-rays and blood tests and arranged an appointment with a physiotherapist the next day. The NP and Physiotherapist put it all together over a week or so, and came up with PMR, likely in consultation with specialist physician(s) at some point.
I was started on 20 mg of prednisone on March 11, 2014 and saw some relief, but not the 70% expected. It was upped to 25 mg on March 14 and 3 days later I had a total melt down. I couldn’t get in an out of a chair, sleep, stand, get dressed, or do anything without pain. I remember not being able to lift a single dinner plate into the cupboard. Toileting was impossible without pain. My upper back, neck and shoulders were so painful and weak I could barely hold my head up. I was sure I was doomed to a walker or wheelchair, raised toilet seat, home care and living with pain. This was pain at the 5-7 range, where 2 is a mild toothache and 10 is the pain of childbirth. I would never describe my symptoms as stiffness. This was on March 18, the day before my 65th birthday.
The NP consulted with an Internist and the prednisone was increased to 40 mg. Within 12 hours I had no pain. That night I slept in my bed for the first time in weeks. I woke up pain free on my birthday! What a birthday present!!
I was on cloud nine with 40 mg. My legs were normal again and I had energy to burn. Life was great!!
The specialist advised dropping 5 mg every 2 weeks until I got to 15. I didn’t make it passed 25 mg. All the pain returned little by little. I tried to inch back up without any luck. I ended back at 40 mg again for a month and although most of the pain disappeared, my cement legs returned. Five years later and my legs are still an issue. Sometimes worse than ever and I have to wonder if this was ever part of my PMR. Again I would have to describe this as stiffness and discomfort, not pain and I still have problems walking any great distance, going up stairs, getting in and out of vehicles, etc.
Thanks to this and other forums I've followed a much slow taper since May of 2014 starting with the no more than 10% rule of reductions. I used the bottom part of the DSNS reduction for quite a while . However, when I reached about 16 mg I became very sensitive to reductions and began .5 mg drops on the full DSNS plan every 4 to 6 weeks, sometimes 8 weeks depending on my symptoms and the situation in which I find myself .
PMR has not stopped me from living my life to the fullest extent possible. My husband and I have a home in Panama where we spend six months during the Canadian winter. The stress of travel, adjusting to variations in climate and activity have resulted in a few flares, which I’ve managed based my own experience, research, and patient experience and advice shared on patient forums.
To this day PAIN is a my symptom of PMR usually beginning in my upper back, neck, shoulders and upper arms. If things don't resolve and get worse over two or three days (increasing from 2 to 4 on my pain scale) I treat it as a flare. Because I use the DSNS reduction plan and drop by .5 mg, an increase of 2-3 mg for a few days can usually resolve a flare if caught quickly.
Nov 2017 I couldn't throw for the dog & thought my shoulders were strained from doing planks. By Mid Dec 2017 I was in so much pain in arms, shoulders, hands, hips, thighs and knees, easily 9 - 10.
Walked like an ape. Fell in bed & lay where I landed bcuz my joints felt broken when I tried to adjust my position or pull the blanket. Couldn't pick anything off the floor, bath, shampoo my hair, cut my food, dress, push the shopping cart, get into or out of the car or chair.
Midday I could walk a little better but the fatigue was there.
So when I dropped a glass bottle of syrup onto the tile floor, oh the language, and because my husband is handicapped I said let's go to Urgent Care. I could not care for us. The great Dr didn't name a cause but took blood and gave me a 5 day steroid pack. I was mowing the lawn the next morning!! But on day 6 I was in as much pain as before.
He referred me to an excellent rheumatologist, who had a cancellation the next day so I didn't have to wait the normal 5 months to get in. He dx'd me having PMR due to raised CRP/ESR and symptoms and prescribed 15 mgs Pred. and a dexascan. Seems like it was just yesterday.
Out went foods with sugar, flour, gluten, dairy, and processing and in came supplements, enlightenment from this awesome site, DorsetLady's taper plan, and walking 10,000 steps/day. Off came 25 lbs. Two dexascans are normal, the second was improved!! Oh & 2am dosage time to get ahead of 4am cytokines!
Fast forward to now, April 2019, down to 4/3.5 mgs from 15. I have added good quality butter & cream, (plus 6 lbs). I am able to care for us and our home life. Rest is key. Planning meals, naps, staying out of groups to avoid germs, are steps we take. I still visit, but give big smiles & virtual hugs! Thank you PMRPro!!
Pmr started 4years ago, fine when I went to bed woke up the next morning knees,legs, ankles and feet so stiff and painful, had to roll on to tummy and slide out of bed could not stand, luckily my husband came upstairs and found me, sat on the bed with tea and pain killers wondering what was wrong with me, after about an hour managed to shuffle to bathroom, eventually got dressed but my husband had to help me down stairs one step at a time. Meeting friends at beach 2hr journey couldn’t get out of car the other end had stiffened up, friends helped me to get out and stand took awhile for the stiffness and pain to subside with bending knees and swinging legs.Did find once I got walking the stiffness and pain got easier.
Phoned Gp had no clue what was wrong with me, went for a few weeks trying all different painkillers nothing helped, every day the pain was like gnawing toothache had to go upstairs and down one step at a time, used to cry every day pain was so bad, eventually GP referred me to a rheumatologist took him 5 months to diagnose me during that time the pain and stiffness started in my thighs,hips,lower back, upper arms, shoulders as well. One GP told me you don’t get pmr in your legs but believe me you do, kept getting fobbed off that it was osteoarthritis, but after x-rays, crp,ESR blood test and being seen by a different Rheumy as I’d had enough by then must of aged 10 years with 5 months of agony and stiffness, he put me on 20mg of prednisolone with in 48hrs I felt like dancing, swelling in my knees, legs, ankles and upper feet all went down. Took me 3and half years to get of steroids with a lot of ups and downs on the way.
Put a lot of weight on with the steroids, if you are careful with your diet there is no need to fear steroids as when I came off all my weight just fizzled away, I couldn’t of coped without steroids just wanted my life back. Think I’m just having a flare first one in 6 months woke up in January one morning all of my pip joints in my fingers were so stiff couldn’t make a fist they are so sore and painful, have been to Rheumy just says it’s osteoarthritis had x-rays no sign of osteoarthritis afraid my Rheumy is not as knowledgeable as the lovely people on this site. Posted about my pip joint pain someone on this site replied that’s how their Rheumy diagnosed they had PMR.
Don’t be afraid to ask questions about PMR someone will always try and help you.
The worst thing for me was coming out of my appointment every month with Rheumy and not getting an answer for my pain, like I said it took me 5 months to be diagnosed I was so depressed and miserable all that time, just try and hold on to the fact you will feel better eventually.
My PMR came on almost overnight. The day before I was inordinately tired with very sore eyes. I had trouble lifting up the duvet to get out of bed next morning and couldn’t straighten up to go to the loo. Shoulders and lower half were agony. On a scale of 1-10 it was 10. Painful hands and arms. Had trouble turning the pages of my newspaper. Crying and miserable. Thinking it would go away I waited a few days before going to the GP. Of course it got worse and I was in even worse pain and more immobile. Bumping downstairs on my bottom and crawling on the floor. Daughter in law came and took me to the surgery. Immediate diagnosis of PMR. A couple of days on pred and all was good.
My story - i was a fit and healthy 57 year old, into yoga, organic gardening, walking and swimming. I had a really stressful summer, ultra busy, then a bereavement, then a really nasty fall landing on my neck. The neck pain continued. I saw an osteopath and took NSAID’s with a bit of success. Then one morning I couldn’t get up. It felt like I had flu, everything seemed to ache. My ‘flu’ persisted. Turning and moving in bed was a nightmare, I couldn’t get up from a chair, put on socks, tie up shoes, bend to get dressed, I felt like I’d aged 30 years overnight. I walked like Frankenstein. My pains (when I focussed) were predominantly in my shoulders and hips, but everywhere was affected. Sitting on a chair felt like I was on glass, I was walking through treacle and a cup felt like a gallon bucket. I could only get comfortable by lying in bed, on my back and not moving. I would say my pain at this time was 8/10 and my aching was 9/10.
I looked up the symptoms, self-diagnosed and went to see my GP, who referred me to a Rheumatologist. He confirmed my diagnosis. I had never heard of PMR and was adamantly opposed to steroids. I took further NSAID’s for a week and had the most painful and miserable Christmas ever! Luckily I found this forum and gained amazing info and support.
I was prescribed 20mg of prednisolone on 31st December and by 2nd January I was about 70% pain free. My GP has been amazing, I had a dexa scan, calcium supplements and Vitamin D prescribed without asking. (I take vitamin K, turmeric, cbd oil and fish oil as well), my GP is supporting me on my slow reduction and I’m now on 13mg. Without this forum and my GP’s support I’d be in a very bad place.
I had pain in my shoulders and arms, took no notice for a couple of months but started to get pain 'all over the place' - decided to go to the doctor's when I couldn't even comb my hair and had difficulty getting out of bed. Age at the time 72.
Went to doctor and explained difficulties. He said "I know what you have, but I will wait for blood results". Next day - doc rang me at 7.30 am and told me to come to his surgery. Result ESR 88, CRP 32. He put me on 20mg pred. Total relief within 6 hours. "Wow" I thought, if you have to have rheumatism this is the one, one tablet, pain gone!!!!
Weekly blood tests. OK for about six weeks then my blood results kept rising. When they went up to ESR 102, CRP 40, doc said "we must zap this" so put up pred to 40mg. It didn't zap it and kept rising. Eventually I collapsed - hospitalised - they put it up to 60mg (thinking it must be GCA! It wasn't! Hospital got me down to 30mg and I was kept there for about 3 months. Started the slow method of reduction.
That was 7 years ago!! I did the usual slowly slowly method (many ups and downs) and am now on 4 mg pred. Doc thinks I'll be on pred for life now.😏😏
My PMR started in March 2017 when my thighs felt as if I had lactic acid after doing lots of exercise, but I hadn't done anything strenuous & the pain didn't go away. I had to use my hands to lift my legs over styles.
The condition got worse over the next 10 months, with bursitis developing in both hips, pain in calf muscles, shoulders, neck & upper arms.
I was sleeping sitting up, as couldn't roll over in bed due to stiffness & pain & was having to use disabled toilets when out, as couldn't get up. It would take me 20 mins to get out of bed & I was walking using my hiking poles as aids. Picking things up off the floor was a major. I had issues getting dressed, & couldn't cut my toe nails
Twice during this period CRP & ESR were tested & only slightly above normal.
The pain & stiffness were worse in the morning & after sitting for long periods.
This eventually morphed into GCA 10 months later when both PMR & GCA were diagnosed.
I'm not sure how to rate the pain level; probably 8/10.
Was diagnosed last December, pain was in shoulders and hands which was very painful in morning 8/10 but lessened as the day went on 5/10. Blood test showed 14.5 "whatever the measurement is" confirming PMR 3 to 5 was told normal.
Started on 15mg and almost immediately full paint relief, decreased monthly went to 12.5, then 10, 9 and currently on eight, no pain to speak of occasional stiffness in hand but may be due to overworking them, seeying doctor in July ans asses progress, continuing all activities including golf and some tennis I am 67.
Just before ski holiday I made an appointment with an osteopath because the pain in my shoulders had become unbearable, sadly ski accident ensued. Recovering from the hip break and dynamic screws inserted was told "exercise is your new best friend". However getting back to work took longer as I didn't feel right (three years before I had a pelvic break after skiing and got back to work in time frame outlined). Told doctor I couldn't get up off the floor during yoga when everyone around was halfway through next position. Was clenching jaw, couldn't sleep, stiff. Chelitis. Folicilitus. I ask if it could be polymyalgia as my sister has that? Am ignored. Dr said come back in six months after your X-ray as I haven't got a magic wand. Went back to work. Had a holiday booked and felt vulnerable and dejected as usual walks beyond my capability. Then went down hill. Couldn't lift arms above head (hair cut off to cope). Couldnt step into shower easily due to tiny step. Sitting down on loo difficult. Couldn't turn in bed. Couldn't get out of bed. (Nightmare as had night pee problem). Couldn't dress. Struggle in and out car. Lifted legs onto pedals. On all fours to go upstairs. Sat watching tv with heat pad and resting and feeling lazy/rubbish. Sore scalp. Killer headaches. Depressed. Husband took over more cooking. Dog walker had to be employed. I still did dog walks but a fifteen minute walk took over an hour of torture, legs wouldn't work, shuffled along and felt like iron bolt through hips, uncontrolled crying in the street (how embarrassing) because I didn't think I could get home and I had only "popped to the PO". So stiff I felt like a statue. I've always had recurring shingles and that increased. Went to osteopath. She mentioned PMR or fibro. A neighbour asked me what was wrong as she had seen me often of late and I looked like an old lady - she's a nurse and stressed I needed to see a different dr. So five months after first dr appointment, and feeling desperate (suicidal thoughts) husband came with me to different, younger, female dr (at 58 this was a first). Bloods taken and as a result of inflammation found immediate PMR diagnosis and steroids prescribed November 2017 and got a life back. Then I found this site. Began to log health issues daily. Yes there's a downside to steroids but worth every single one in my opinion. Started at 30mgs now on 7/6.5 alternate days. My daily health log is now once in a while and reflects how far I've come and how much better I feel.
My PMR story starts in August 2015, after a year of stress working full time, and writing a book in my spare time, + two voluntary jobs, which took up many hours in the week,
I had what I thought then was an RSI related to my job. Pain in what I described as my shoulders, but was actually in my upper arms. It stopped me playing tennis. My lower back was also painful at that time. I saw a physio and an osteopath, to no avail. In mid September, when on a pre booked tennis holiday, both areas of pain were better. I thought it was down to warm weather (Turkey), an explanation which seemed to make sense as on my return to a cold UK the pains came back.
They continued at this level until early December, osteopath could no longer help. My ‘shoulders’ were agony. Could not raise my arms above elbow level. Could not dress, brush or dry hair, get in or out of bath, climb stairs unaided, roll over or get out of bed, get out of a chair. Move,met very painful. Sitting still very painful.
Went to GP, who was unsympathetic. Said it was just aging. I said two months prior I had been playing tennis daily. He obviously did not believe me. To be honest I barely believed myself. I had aged so much...hobbling around, and felt so exhausted and unwell.
GP suggested shoulder ultrasound which after decades of tennis unsurprisingly showed calcification. He would not ultrasound other shoulder despite my explaining that both were equally painful...bit of a clue there!
We tried increasing doses of prescribed pain management including Tramadol and upper dose Co-codamol (60mg codeine, 1g paracetamol), none of which touched the pain.
Into January 2016. I was due to go on holiday to Australia, and realised due to my pain I would not be able to manage the flight. By this time I had researched my symptoms, convinced I had PMR, found this forum, read Kate’s book. As was usually the case I could not get an appointment at the GP surgery for three weeks. I went MAD, and was eventually granted a telephone consultation with ...guess who... the GP whom I had seen before. I asked if I could have ESR and CRP done in advance of the telephone consultation.
He phoned me, and over a half hour conversation I tried to persuade him to give me a short course of prednisolone and see if my symptoms went away. My CRP he said was normal at 11. Can’t remember what ESR was, but he said it was normal too.
He didn’t like fact that I knew 20% of sufferers have normal blood markers.
Eventually, with very poor grace, he agreed to prescribe pred for me. The following day I went to pharmacy to find he had prescribed PSRACETAMOL, not pred. I was beyond furious. Eventually I got the pred. Pain free 8 hours later. On the plane 24 hours after that! Phew!
Since then I have refused to see that GP, and, luckily seem to abe allowed to do what I like sensibly regarding tapering dosage.
But I have never had blood tests done, cholesterol or hbac1 or whatever it is called. Never been given advice in case of GCA.
Told to take Alendronic Acid. Refused unless I had a bone density scan which was normal. So I take calcium , Vit D and Vitamin K2, following advice from book and forum.
Now down only to 7mg, having had difficulties getting to 6.5mg last August and November. Stayed on 7mg over Christmas, hol to New Zealand, and a total knee replacement in late Feb.
Will try the slippery slope to 6.5 and associated adrenal stuff in a few weeks.
Addendum having seen some things others have written above.
Like I suspect many people I thought, having read Kate’s book, ‘I won’t be as bad as that’ so took no notice of pacing etc, carried on with my life, got my book finished and published. And I was SOOO tired!
And EVENTUALLY 18 months after diagnosis, realised I couldn’t carry on like that. Retired from work and volunteer roles, and started pacing myself. It’s a different life, but a good one!
I find it difficult to remember exactly when and how it started.
In 2015 I was caring for my parents. I was very stressed and was aware that it was getting more difficult to cope with day to day jobs. Mum's support stockings were a real struggle and getting back up off the floor after putting them on. Mum used to say I was too young (66 !) to be that stiff so I just kept going.
Then after dental treatment I had a violent reaction to an antibiotic. I could not sit up to vomit and could not get out of bed to get to the bathroom, frankly I was scared. From then on I could not turn over in bed and had trouble getting up and dressed. The pain was in my arms and shoulders initially but once I started getting about it was in my thighs as well, I was walking through treacle and going up and down stairs on my bottom. I needed to support one arm with the other to reach things. The initial movements were painful but once moving stiffness and weakness were the main problems.
I self diagnosed as both my father and brother already had PMR and I could see similarities. My GP agreed I was probably right and gave me a 2 week trial of 15mg pred. The next day I transplanted a box hedge and it felt amazing!
At first I followed my dr's instructions but she left to have a baby and the others weren't so well informed so I bought Kate's book to educate myself and was directed to this forum. Since then I have self managed with support from fellow suffers and the well informed generous people here.
I have had 3 major flares, always after periods of stress that I had no control over, my mother's death, my sons breakup and my husband's illness. Always having to return to 15mg and slow reducing. One time I needed 20mg for a month to get comfortable.
I have never been able to get below 10mg, except a short time at the beginning of this year, then my husband was ill and I flared again.
Recently walking has become more difficult again and I'm unsteady, like walking on a pebble beach. My arms too are very weak, hard backed books are too heavy to read, and my shoulders are aching from driving a few miles. All this while on 15mg. My new GP is young and keen and I have at last been referred to a rheumy, but I expect it to take several months.
I have had mild background ache all the time but never the initial pain since being on pred.
Fatigue is a problem, I have an after lunch sleep daily and often feel an all pervasive tiredness early evening that stops me cooking dinner.
Though, in hindsight, I think I had PMR stiffness and inflammation for several months / years before, I had minor op and lost my mum Dec 2016/Jan 2017. Immediately after these two events bilateral stiffness started with a vengence below the waist, particularly in the thighs. Brought new mattress thinking this might be the problem. By March 2017 had difficulty getting up out of chair, couldn't bend knees at all when standing. Various investigations MRIS, x rays on knees and lower back. RA in knees disgnosed. Gradually the stiffness went to arms, shoulders and neck, almost seemed like a gradual paralysis from the bottom up. Had to lift leg with hands to get into car and in / out of bed. Legs were an absolute dead weight, walked like new born fawn when first rising from seated position, then clumped along like a robot! Lost independence since couldn't shower/ dress myself. Even had difficulty wiping my own bum on occasions. I thought I had put on weight, but this was 'ballooning' from the inflammation.
Had private physio and eventually she said she thought I might have PMR. Sharedd this with GP who referred me to NHS Rheumy. However still hadn't received an NHS appointment when six weeks later inflammation swelled the neck. This gave me a restrictive feeling in my throat which scared me into queue jumping with a private Rheumy consultation in June 2017.
Until this point bloods were normal. However the bloods Rheumy asked for, three weeks after the latest normal ones, were raised considerably at ESR 80 and CRP 18, though he had firmly diagnosed PMR through physical examination, despite the previously normal bloods.
15mgs pred worked the miracle in 24 hours, though the aching in thighs (my first symptom) has, and is, always present. Interestingly searches on the net for self diagnosis earlier on produced MS as a possibility. My search at this time focused on symptoms below the waist. It was only when symptoms went to upper body that PMR popped up on the net as a possibility. This may be why many members have long to wait for diagnosis, since lower body symptoms seem to send medical practitioners in a different direction than upper body symptoms.
My pain started in Oct 2015 and I waited a month before I went to the GP. He diagnosed rotator cuff issue and said he would write to get an apt with a consultant (this never happened as he never wrote). A blood test was taken and they rang me because of the high inflamation markers. They did write to the rheumy for an apt. Then the pain became bilateral. I couldn't put on mascara, brush my hair without supporting arm, get off the sofa. Shoulders hurt and hips hurt. The disease progressed over Christmas so I felt awful. (I met a friend for coffee and funnily enough I felt fine sitting talking to her. Social engagements do help). I changed my working hours from 8-4 to 7.30-2pm so I could go home and rest. I did think if this is how my life is going to be I am going to Dover and jump off a cliff. I was scanned and xrayed to see if I had RA instead of PMR. I did not have arthritis. Rheumys just never want to believe you have PMR. Why is that? The rheumy kept delaying diagnosis. Finally she gave me a prescription in case I became desperate. On 30 March 2016 the rheumy cancelled my diagnosing appointment the day before. I felt so furious and desperate. I threw a hissy fit and changed rheumys to another hospital. I started taking 20 mg prednislone and went off to a Monaco for a few days. I felt amazing and walked for 26,000 steps per day (sun helped).
It is now 4/2019 and I am on 1 mg per day. When ever I try to lower the dose more aches and pains come back. I would say you must try to get up and walk everyday. Motion is lotion.
Hope this is not too much emotional information PMR pro. Thank you.
Two distinct and separate episodes, 9 years apart.
Age 60- got shingles vaccination, 4 days later abrupt severe pain especially shoulders. Couldn’t dress self, comb hair, unroll car window. Went to G.P. who did arm X-ray after seeing me walk in the door. Rolling over-any movement really- in bed excruciating. Pain in right jaw. No pain feet/ankles, or hands. Neck pain.
Age 69: right hip achy for a couple weeks, had X-ray showing some degenerative changes. Then shoulders started to hurt, also kept readjusting my pillows- couldn’t get comfortable to read in bed because of neck pain. G.P. thought statins were cause so stopped them. When rolling over in bed became excruciating, I knew it was PMR. Also my reading glasses bothered my head; I kept bending the ear pieces out so they wouldn’t be so tight. Again, right jaw pain.
First episode, rapid onset, elevated sedimentation rate. Second, slower onset, no elevated inflammatory markers.
Rapid(within 24 hours) relief both times after starting prednisone. First episode completely gone in 1 year; second episode has lasted 5 months, am on 9 mg prednisone/day, 15mg methotrexate/week.
PMR started due to a recurring chest infection (which started in November '16... After 3 months of anti bi's and feeling very unwell, I started with a very painful shoulder... GP thought it was frozen shoulder as couldn't raise arm above to even shoulder height. 2 weeks later I couldn't even prop myself up in bed and getting out of it was excruciating... Showering dressing and toileting was tear inducing.... Back to GP who in fairness diagnosed PMR.... I had bloods taken and ESR CRP were very high . Only problem was, GP said I couldn't start Pred until chest infection had cleared as steroids would compromise my immune system.?. So another 5 weeks without pain relief! I was by this time on a pain level of 10+++ and really didn't want to live rest of my life in that state of pain and stiffness!!!!! I rang GP after those 5 weeks begging for something to help.... I was given a script for Pred 20mg end of March 2018.... A day later pain stiffness was level 5 and another 24 hours was a 2..... I muddled along last year reducing as per GP 1 mg per month.... That was a bit of a struggle... Thankfully I found HU /PMR GCA site in February this year. Such a load off my mind with all the sound advice and friendliness . I should add that when given Pred script, I wasn't told about nor prescribed calcium and Vitamin D.. Was not offered a dexa scan and was issued with Omeprazole and AA..... Being completely in the dark about PMR I took them .. Have stopped AA a couple of months ago and feel better for that. Currently on 7.5 reducing this weekend to 7.... Pain stiffness virtually nil at this time . . Thanks to everyone .. Regards Lena
2014 husband had total knee replacement and stroke at the time of operation. Extremely stressful . Few months afterward hands became very painful ,diagnosed severe arthritis ,steroid injection worked very well . Over the next year became unable to turn over in bed , climb stairs , put socks on , lift arms to do anything, walking like a tin man ,could not sit properly only sort of sideways on hip . Told originally ,your bloods are raised but we don’t know why take paracetamol and keep warm . Told by 2 GP s it was reactive arthritis and would get better in a few months , given naproxen that did nothing for the pain , for me it was level 8/9 easing slightly at tea time . Diagnosed January 2017 started 15 pred took 2 days for ability to turn over and move better . Recently dropped low with dose and inflammation has built up again so back up and going to try a much slower reduction next time . Glad for prednisolone.
Woke one morning and both upper arms/shoulders painful. Thought I must have overdone things but pain refused to go away. After a few weeks my hips/upper thighs became really painful and I was having problems getting in/out of bed etc. Mornings were a nightmare as had difficulty getting in and out of shower, washing hair, even dressing myself. My right thigh was excrutiatingly painful and I had to lift my own leg in and out of car and bed . Couldnt turn over in bed - found myself involuntarily yelling out in the night as every movement was torture. Visited my GP who mentioned PMR but wanted blood tests to confirm. Did blood tests on same day . Bloods came back as CRP normal. ESR test wasnt done. Was in so much pain by now that I was sleeping in a chair. Couldnt get into bed and if in couldnt get out. Having to get up a few times per night didnt help either so I was getting desperate and feeling low and tearful.
Made emergency appointment with GP who admittedly realised how much trouble I was in and said despite the bloods lets give Steroids for three weeks and that should give an indication if PMR was the problem. within a few hours of first dose was painfree.....
This is just the start of my journey with PMR and I have to thank the folks on this site for help and incouragement in these early days when everything is so scary. Before all this kicked in I was a very active 74 year old - belonged to a walking group and used to walking 5/6 miles a day. My life has changed. I can no longer walk this way so have to a large extent lost part of my social life. As a widow I have found that very hard...
Hopefully once you get yourself back on track with the steroids, some semblance of normality will return - but you may have to opt for shorter walks and not every day!
I know how difficult it is to be widowed and also lose part of social life, but hopefully you will still be able to take some part.
Gradual onset, for a long time thought it was osteoarthritis getting worse, and doctor knew no better. Finally seen by another doctor who diagnosed me almost instantly. By then had all the classic symptoms. Started with difficulty standing and taking first steps when rising from a chair. Developed into difficulty getting out of bed, or turning my neck. Thought I would have to give up driving because of the neck. Took me half an hour one evening to get up off floor after doing my physio and yoga exercises - which were also becoming much more difficult to manage and I'd stopped doing some of them. I was still working for much of this undiagnosed time and had some trouble doing some of my tasks - just working in a library. My neighbour told me her daughter who was interested in medicine had noticed how I was walking, my painful ascent of front steps especially, and remarked to her mother that "Mrs... has bad arthritis". For a long time I thought the pain was from my lack of fitness and kept forcing myself to do more and more in an effort to improve. The pain was like that you get from over exercising. By the end I felt like my whole body was enclosed in a cocoon of pain. Pred (15 mg) relieved some of my symptoms within hours and after 2.5 days I was pain free.
I went undiagnosed for about 14 months. First pred in June, 2015, I had just turned 68.
My symptoms began a couple of months before diagnosis in the form of back pain, weekly visits to chiropractor did no good. Woke up one day unable to turn over in bed, very stiff. OH had to help me out of bed, cried with the pain. Shoulders, top of arms, back of thighs very painful, unable to put my arms up to do hair, great problems dressing, getting off the loo, pain 10/10. Started on 40mg predisalone for a week, saw different doctor the following week who put me on 20mg, thought predisalone was amazing, all pain disappeared. Had never heard of PMR, was frightening. That was May 2018, have tapered slowly since, now on 6mg. Side-effects have been brain fog, fatigue, memory loss, Pred rage, mood swings. Am 71, was still holding down a very stressful job, had to give this up as started to feel very anxious. PMR is definitely a life- changer.
In July 2016 when I was 72, I was able to walk with my daughter in the Canadian Rockies, but in September 2016 whilst I visiting my brother and family in Australia I started to get stiffer and stiffer, so that it was hard to stand up after being in the car, bend down to put my socks and shoes on and to turn over in bed. I tried Yoga there to relieve the stiffness but it didn't work. After the journey home I became really stiff and my legs, arms, shoulders and neck became very painful. i.e 7-8. Living alone I started to find the painful stiffness was causing me difficulties in doing everyday things such as standing from sitting, getting up off the floor or out of bed or bending to put clothes in the washing machine. I started getting very tired and depressed too. I went to the GP mid October and she diagnosed PMR straight away. My ESR test was 80. She started me on 15mg Pred. which relieved the pain and stiffness to quite a good extent i.e. level 3-4. Then my GP told me to reduce to 10 mg after a few weeks. I had a bad reaction to reduction, felt light headed and in pain i.e. 6-7. Went back to 12.5 mg which helped. I became very depressed as I had loved walking and had led an active life which became very difficult with the PMR. I took myself to a counsellor to have help with the life changes and was able to accept the situation after about 6 months and also to accept the need to slow down and rest. Since then I have been reducing using DSNS with a few hiccups when I had to go up temporarily. Taking my Pred. at night I avoid feeling woozy and aching in the mornings. Now I'm down to between 4 and 3.5 mg. My thighs have not been nearly as painful recently i.e. 1-2, so I'm able to walk further without any pain. My arms, shoulders and neck ache a bit but not badly. 2-3. I feel things are improving in spite of reducing the pred. Hope I'm not tempting fate!!
My journey with pmr started with severe arm pain, one sided and goin pain one sided. Pain moved into hips and thighs two sided. Pain was almost unbearable. Stabbing and constant. I was thought to have torn a ligament in the upper thigh. I could hardly get out of bed, use the toilet or raise my hand above my head. The pain was off the pain scale. I was diagnosed pretty quickly and have been on prednisone for 2years and 5 months. Now I get debilitating pain that roams around my body. I have been to hospital a few times thinking I fractured something, the pain is a level 10. I have had this type of pain in my ribs, bone at the top of my hip and low back and feet. When this horrible pain comes on, I up my prednisone until it subsides and then start lowering again. I can not walk very much because of the pain in my thighs, even when I am on enough prednisone. However, I can walk in stores if I have a cart, I just can't go out and go for a walk. Lately it has affected my feet. The pain is that of a fracture. I was able to get thru that by icing the affected area and using aleve. Now I am at 13mg of rayos.
Generally, My mornings are about a 2 on the pain scale and will increase to about a 4 by evening.
Stiffness and fatigue limit my activities. Short term memory loss is scary.
Good luck to all who have the bad luck to get this disease.
Mine came on after a routine blood test-and a new job!! April 2018-hand swelled up a bit where the needle had gone in- this settled over a couple of weeks-then flu like symptoms, aching , chilly, felt really unwell- then had severe fatigue, swollen lips, swellings over my hand and arm- accompanied by widespread rashes over abdomen, groin area- Gp started cetirizine, rashes settled, swellings settled- then came aching over hip girdle and shoulders, aching in groin area - pain behind both knees-severe morning stiffness that actually lasted all day really if I sat for more than 20 mins-CRP was 20-20mg Pred initially - pain free/ stiffness free- tried to taper too quickly and symptoms returned, had to go back to 15mg for a flare- had gone down to 2mg so could have an MRI- currently stable on 6.5mg Pred- I know I have PMR but pain is more of an ache across shoulders and groin area and mild morning stiffness- not interfering with my QOL
After 8 operations and then a shoulder replacement on right shoulder doctors insisted that all my shoulder pain and groin pain was due to the ops. My groin pain was acute and usually worst after sitting down. Shoulder pain was none stop. This continued for about 18 months.from my replacement. Finally saw senior doctor and he instantly diagnosed pmr. Blood tests did confirm this. My gp said that some people dont show raised blood results but still have pmr. Diagnosed. at 55 in 2018
I had a bad fall and tore ligaments in my knee in the summer of 2017 and started seeing a private physio , who said he'd be able to help my chronic back condition as well . Over the next few months I got stiffer and stiffer and was having to use a walking stick, even though the knee pain was improving . My daughter was having to cut my toenails and I couldn't get up and down off the floor and struggled to get out of a low chair or off the loo .
In March 2018 my hip and thigh joined the pain party and I developed carpel tunnel in both hands . I had ( and still do ) been going up and down stairs one at a time ever since my torn ligament .The physio thought I might have arthritis in my hip and asked my GP to arrange an X-ray , which was fine . When I saw the GP I said I was 66 but felt like I was 86 .....he ran a few tests but didn't do inflammation blood checks and said I was just getting old .......
In August 2018 my arms , shoulders and neck joined the pain party . I saw a sports masseuse who had sorted out a frozen shoulder years ago , but this time she couldn't help . None of these medics mentioned PMR and I'd never heard of it - but I'd forgotten that my sister had it very briefly 10 years ago .
By September 2018 I was unable to turn over in bed , my OH had to pull me out of bed , steady me on my feet and help me get dressed . I had trouble getting off the loo and wiping my bum . I had to lift my legs in and out of the car . I struggled to lift my arms to wash and dry my hair . Even lifting the kettle was a struggle. The carpel tunnel was so bad I had difficulty cutting up vegetables and cooking.
One day I hobbled into my dressmaker's , whom I hadn't seen for several months . She was shocked at my appearance and asked what was wrong . I told her my tale of woe and she immediately told me I had PMR . She'd had it herself so knew exactly what I was moaning about . I googled PMR and nearly cried with relief. I went back to the GP and told him what I thought I must have .
This time he did the relevant tests , the inflammation markers were very high and he started me on 15mg pred in October 2018 . He said I should be pain free with a couple of days , but I only had about 50 per cent pain relief . He increased it to 25 mg , which gave 70 per cent relief . It took 30 mg before I was completely pain free .
I'm now being seen by a rheumatologist who has reluctantly accepted that I will now only do a DSNS taper - 1 mg a month - and I've reduced to 16mg. I have about the same amount of pain as I had when I started on 15 mg. If I don't manage to taper over the next couple of months he's going to start me on Methotrexate.
This site has been an absolute Lifeline for me and I am eternally grateful to PMR Pro , Dorset Lady and many others who share their knowledge, experience and empathy .
PMR diagnosed May2015. However since having my first and so far my only chest infection 18months previously,I never felt “well” till started the prednisolone tablets. Can’t say I felt actually ill all the time but had various aches, stiffness and fatigue. In retrospect certainly felt very low. Initially the stiffness/tiredness was the worst -having to lift my legs in and out of the car and being unable to get on my fairly small pony from the ground, definitely lost my spring. I retired a little earlier than I originally planned as had lost all enthusiasm. It helped a bit but I still felt exhausted most of the time. I continued to exercise and put my aches down to that until I got so fed up being tired I really upped my exercise like you’re supposed to -not my cleverest idea. I ended up unable to lift my arms and unable to turn over in bed etc, so painful, spent several weeks trying to sleep downstairs in the sofa before visiting GP and was promptly diagnosed. I also had by then mild but persistent headaches, scalp pain, strange dry cough, increased tinnitus and couple of episodes of jaw pain, but was feeling generally so awful I didn’t think much of them and the doctor didn’t ask. Also had what I know now was thigh claudication. No visual signs thankfully. Forgot to say could trip over nothing in the year before diagnosis too and any mild exertion and I was sweating even if not a bit out of breath. I was waking in the early hours feeling feverish for months before the shoulder pain got really bad-I thought it was recurrence of menopausal symptoms. I can’t believe how long I waited before going to the doctors, but just thought I was getting old!
Prednisolone worked like magic in a few hours and I have been lucky to suffer very little pain or stiffness at low doses. The fatigue has been my main problem since.
Was also lucky finding this forum early on-otherwise think my progress would have been very different. Thank you all.
PMR hit me 2.5 years ago at age 61. Since I had spinal nerve damage in my low back, it may have started before that as I had lots of new trouble in my pelvic girdle for as much as a year prior. But I knew something different was up because I had new neck shoulder pain. Over a 3 week period this became gradually worse, with intense headache coming on in the top of my neck/occipital area, which still has me worried about my potential for getting GCA. My doctor got me an MRI which showed some issues in my cervical spine, which sidetracked the diagnosis for several months.
2 months after the new neck and shoulder pain began, the stiffness really became pronounced and I could hardly move after being at rest for a short time...it was all day/all night stiffness, not just morning stiffness. It took all my effort and several minutes just to turn over in bed. I had to get help to get myself up from the floor. I also got new pain and stiffness in my knees and elbows at that point. I would say the body pain was at least a 6/10 most of the time, except the neck pain/headache was often worse at over 7-8/10. Around the 2 months mark my doctor gave me a 5 day medrol pack of prednisone. I experienced the miracle cure (all symptoms resolved) within 12 hours after the first dose. At that point I figured out I had PMR, although it took 2 more months to convince my doctor, as she had never heard of PMR. A few days after the 5 day course of prednisone I gradually got all my symptoms back and I had my first relapse. I told my doctor I thought I had PMR, so she ran sed rate, CRP, ANA and several other related tests. My sed rate came in at 34 and my CRP was 18 (both elevated, but not sky high like other people, but I had recently had the prednisone).
At that point, my doctor gave me a 3 week course of prednisone 10 mg per day. I had another miracle cure, with maybe 80% resolution of symptoms.
Unfortunately, the prednisone ran out and I had another relapse. This time my extreme headache didn’t come back, but everything else did. Finally my doctor was convinced, she put me on 10 mg prednisone and referred me to Rheumatology.
The rheumatologist forced me to reduce 1mg per month to 2 mg, well beyond the return of my symptoms, and I had a relapse lasting many months. Finally I returned to 7 mg and have been on the DSNS since, but start to flare around 5 mg, so I’ve been no lower than 5 mg for the past 16 months.
Where would I be without the advice from our experts here on the forum? Doctors in my area know/care very little about PMR. They seem to think it lasts about a year max.
Pmr started while I was seeing a physio for cervical spondylitis. She recognised it so told me to get urgent app with GP. GP suspected PMR and took the bloods to prove. After 2 weeks more bloods as first were lost. Then confirmed PMR. We were going to Malta for 3 weeks in 2 days so GP wouldn't give Pred till we came back. I believed I'd cope with Cocodamol. How wrong I was! OH gave lots of support - helped me dress/undress, lift me off loo, turn over in bed etc. The pain, shoulders, arms and pelvic girdle, and stiffness increased and was at its worst at about 3am till 7am. I'd rate this 8, childbearing 10. Pain would ease off to about 4/5 the rest of the time, but still had stiffness. Exhaustion took over completely at about 6pm. Of course we should have cancelled but we didn't realise it would worsen. GP gave me 15mg Pred, Lanzoprazole and Calcichew the day after we returned, October 2016. The Pred worked its miracle in about 4 hours. Stopped Lanzoprazole after 6 months when I found this forum re Dexa scan showed good bones. Now on 5mg Pred awaiting Endocrinologist next app. My rheumatologist thinks Pmr is in remission and waiting for shoulder scan for bursitis ? I follow advice on diet and walk about 5 miles every day.
Thank you for your advice, support and time. Without this forum my experience with Pmr would be much worse.
Sorry for the delay. My diagnosis was in March 2017 when came on overnight and when I got out of bed I couldn't lift my arms up enough to get my dressing gown from its hook. Getting a shower was equally painful and difficult. I thought that, as it was only 7 weeks after my replacement hip op and the use of arm crutches for 6 weeks that could be the cause but as it got no better a Doctor appointment was who arranged for a full blood count which revealed that my CRP and ESR levels were high and she diagnosed PMR and put me on Predisolone (15) mg. This took away the pain the next day. I have never seen a Rhuematologist and have almost been left to it to reduce after the first jump down to 12.5 mg. Had some issues along the way but I am now on just 1 mg and doing well. I have never had any recurrence of pain in all this time and feel very lucky compared to some. Pain level at diagnosis around 8 I would say. D
I woke up with one sore shoulder. It progressed to being quite painful and I needed help putting on my jacket or coat. The muscles in the back of each leg felt oddly tight, like they would snap.
It progressed over the next 6 weeks to both shoulders. I could not find a comfortable sleeping position. My hips and groin began to ache. I needed help to stand up. I could not raise my arms to shampoo my hair in the shower. I could barely dress myself. Rising from any seated position (car, couch, toilet) was painful and nearly impossible. Movement equaled pain. I got a cane. I weighed myself and discovered I’d lost 17 pounds. I had night sweats.
I thought I was dying.
As luck would have it, I had previously booked an appointment with a rheumatologist about the osteoarthritis in my hands. The date finally rolled around and I told her forget my OA concerns, something else is ruining my life and ibuprofen gives zero relief.
She ordered lots of blood tests and told me about PMR. I went home with a prescription for 10mg daily of prednisone. 6 hours after the first dose I put the cane away. I slept well for the first night in months. I could raise my arms. That was the start of my journey, just started my 4th year with pmr.
Between 1976and 1989 I had several operations on my spine which have left scar tissue. No keyhole surgery in those days! The nerves flare up from time to time, fortunately not too frequently as the pain is severe. My general mobility is impaired, and I cannot do the sort of exercise and walking that is recommended to prevent osteoporosis. I had quite a bad menopause and used HRT until I was in my mid-sixties. I only stopped because I no longer had the will to argue with my GP at each review! BUT my recent Dexa scan shows I do not have osteoporosis, so who knows!
I was being treated for one of these back flares in late 2016. We decided to try amitriptyline, but I had used it before, and it had caused very bad acid so the GP added Omeprazole into the mix.
Within two weeks of taking this I was in real trouble. Apart from my usual symptoms, the pain and stiffness in my neck, shoulders and hips was just awful.
Nights were the worst. I dreaded getting into bed. I couldn’t use my arms to lower myself and had to sit on the side of the bed, judge the distance I was from my pillow and just let myself fall and there I had to stay. Turning over was immposible. My OH would help move my legs into the bed and cover me over. Without help this would have been impossible, I just could not reach behind me for the cover.
I would sleep for two or three hours when the pain would wake me. The pain was too bad to stay put but the reverse of getting into bed was just as terrible. I would not wake my OH because if he got sick through lack of sleep, we would both be screwed!
Once out of bed the pain and stiffness in my hips was so severe, I could not walk and I would stand there for about a minute, very often with tears running down my face. Eventually I would get moving, but it was winter and cold, and I couldn’t get my arms back enough to put my dressing gown on.
I spent the rest of the nights sitting on the settee with headphones listening to radio 4 and drifting in and out of sleep.
I thought the pain in my hips and neck could be part my back problem, but I had never been stiff before or had a problem with my arms. Lots of googling led me to a BMJ report on the effects Omeprazole had had on some people. It described my symptoms exactly, so I phoned my GP and told him I needed to change my medication. He said he was sorry and prescribed Pregabalin (Lyrica) instead of the amitriptyline and stopped the Omeprazole. I was also taking 8 Tramadol a day, but it had no effect whatsoever on the PMR pain.
According to the BMJ report the symptoms would go within a couple of weeks of stopping the Omeprazole so I struggled on.
The pain and stiffness did ease somewhat around lunch time and for a couple of hours in the afternoon I would be much more comfortable, which almost on a daily basis led me to think it was getting better only for it all to return in the evening.
After a couple of weeks, I returned to my GP but he seemed to ignore the problem with my arms and assume the rest was part of the old problem, so just increased the dose of pregabalin.
After 10 or so weeks of this, fortunately I suppose, I woke one morning with my hands seized up. I saw the GP that day and he said, “Well I suppose there could be more than one thing going on”!!
He did a blood test which showed - Serum C reactive protein 54/mgl, Erythrocyte sedimentation rate 42 mm/hr and anaemia.
The GP prescribed 30mg Pred for 7 days and then stop. The first night was like a miracle, I woke and realised I had NO PAIN, ANYWHERE! But once the 7 days was up the pain soon came pouring back. The GP had arranged an appointment with a rheumatologist so in the meantime he prescribed 30mg for 5days, then 25mg for 5 days, 20mg for 5days and so on until I saw the rheumatologist. The rheumatologist gave me an injection which didn’t last as long as he had hoped so I was prescribed 10mg pred.
As far as PMR pain goes, I have been totally pain free since then and was down to 6.5mg before I developed GCR symptoms. I was and am very tired though and need to pace myself seriously.
I don’t believe the Omeprazole kick started my PMR all by itself! But on top of years of stressful and upsetting situations and countless small injuries (as PMR suggested as a cause in some people) I think it could have been the last straw.
I am now taking 30mg pred but the effects of that weighed against sight loss is to me a no brainer.
Hello from Missouri. I have had pmr for at least 10 years, probably more. the pain and stiffness, especially upon rising from bed went haywire after a total hysterectomy in 2004 along with a lot of family stress. Emotional stress is a killer for me. I was not properly diagnosed with pmr, nor was it suspected until I switched primary care provider in 2010. I just thought or imagined all kinds of cancers were lurking in my body. I had hysterectomy for cancer so fears not totally unexpected.
Finallly, went to emergency room for severe chest pain. Pain ended up being costochronditis, and ER doc took one look at me and said: "you have polymyalgia rheumatica. " I was haphazardly treated by a University rheumatologist who said I could not possibly have PMR as I could easily lift shoulders over my head. He dismissed me. The truth is while I could lift shoulders over head I could not keep them there. I had to change my hairstyle because I could not use the hair dryer for any length of time to blow dry my hair.
I messed around with this group for a year or so. Finally primary sent me for a temporal artery biopsy after I complained of double vision.
Biopsy showed GCA, but was written up wrong on the pathology report.
Actual statement was "marked hystiocites indicating giant cell arteritis. "
but his interpretation was that if I had had it, it was gone.
So primary read false report, and treated accordingly.
At the urging of my best friend, a nurse practitioner, I completely switched all medical care to a different city. Immediately the new primary doc sent me to their rheumatologist, an amazing doctor. He immediately sent me to the Mayo Clinic in Rochester, Minnesota. My husband and I drove to Mayo 7 times in 2017, that was 14 times across Iowa. The head of rheumatology at Mayo was upset with the pathology report. He said he did not want to see a report. He wanted to see a biopsy. Fortunately University still had it.
He was upset when he saw biopsy. He told me: "you have under treated temporal arteritis".
Pain level, hovers around a 4, with exertion muscles start screaming at me,
especially the muscles right above my knees on front of legs.
The fatigue is mind numbing at times. I have several good hours after the morning pred dose kicks in, then I need a sit down in the afternoon to have the energy to fix supper. Jaw pain, headaches, double vision when I look left or right, left is worse. The left side has always been worse with all of this.
Pain in feet, leg muscles, aching arms, whine, whine, whine.
On a positive note the costochronditis is gone. It seems with pred that is the first thing that went away. I now find I have days when I have more energy. I have no depression. But, I am in counseling and watch the stress in my life. I recommend counseling for any one with this disease.
My husband reminds me that three years ago I could not get out of bed and spent my days in a chair. Now I am busy until I crash in the afternoon. I tried many types of exercise. they all ended up triggering a major flare about 3 to 6 weeks after starting.
I am also very short of breath, and recently started seeing an ENT. I suspect bronchitis or asthma, both common where I live. Although from my experience this disease truly affects every system in our body,.
I finally found an exercise that works for me. I go swim. I joined a local rec center with a rehab pool. I walk in water and do exercises in water. I highly recommend it. the water is so forgiving on our weak muscles.
I wonder how much of my muscle weakness is pmr/.gca and how much is prednisone use for 8 years. I am down to alternating days of 6mg and 5mg.
I am also on Losartan for high blood pressure 100mg daily.
I take Pepcid AC for chronic dyspepsia. A recent endoscopy showed stomach in good shape. Gastro thinks problems are related to nerve damage from the gca. So she took me off Pepcid. Immediately I developed severe arthritis in neck and elbows, feet, etc. Not to mention stomach bloating and pain., Went back on Pepcid AC (10mg) and arthritis pain is waning. My only conclusion is that since Pepcid AC is a histamine blocker it works on osteoarthritis inflammation. Not sure, but that is how it is working for me.
I have limitations in my life, but nothing compared to 5 years ago.
There is a light at the end of the tunnel with this disease.
It may or may not go completely in remission, but where it is now; I can live with it. Oh, SED was as high as 105, now it is normal at 23.
Hi PMRpro. A bit late with a reply, but hopefully better than never.
4 main symptoms initially.
Firstly, bouts of sudden onset extreme fatigue- how am I going to get home, stand-up, climb the stairs, walk-up the hill? Lasted between a few hours and a couple of days accompanied by tears.
Then woke up one day with very stiff painful hamstrings - got better as day wore on. Sometimes with fatigue.
Two weeks later shoulders joined in.
All relieved when commenced on pred, but always back again in morning. This has improved since split the pred dose to first thing in morning & last thing in evening. Currently 7mgs and 2 mgs.
Have had a period of neck and scalp stiffness and pressure with a flare.
Currently, all fingers and toes crossed feeling good on 9mgs.
By the way, if a particular area feels really sore I’ve found a couple of Paracetamol and a 20minute icepack - cubes crushed in a small damp towel - works absolute wonders. It numbs the area and takes down the inflammation. The effect lasts for hours.
I moved a heavy boat and helped carry in our dock one October few years back. The next day I could barely move, very stiff and the pain was at a level 8. I thought it was muscle strain but this continued for months and months. The pain was usually dull, aching, deep and steady though I could have sharp "stabbing" pains as well. Stiffness was intense and only resolved a tiny bit with stationary bike riding. I could no longer jog, body build, climb mountains, lift things, and eventually walking became a problem even. After seeing so many doctors, trying cortisone shots, NSAIDs, all kinds of alternative therapies, my blood markers showed rampant inflammation. Still even my first rheumatologist missed that it was PMR. I could not comb my hair, put on a bra, had trouble tying my shoes, and woke up with stiffness daily. Hubby had to help me with some daily activities though I managed to keep teaching art to elementary students. I could barely sleep for the pain and no drugs seemed to help. I began to think I had a strange disease and was ready to consult with the real "Dr. House" in New York City when a new rheumatologist diagnosed PMR based on symptoms and blood tests. She gave me 10 prednisone to start (or might have been 12) and immediately I felt "cured." I am still on pred (4 1/2 mg) split dose and still working, able to lift weights, walk, jog, climb mountains (slowly, not as tall) bike ride and teach.
March 2018. My whole lower area hurt, could hardly get out of bed. One week later it hit my arms and shoulders. It took me so long to get out of bed and dress myself. The pain last all day not just morning, which I’ve read it usually gets better throughout the day. I felt like a virus had it me bad! I was hurting, tired, losing muscle mass fast. Pain scale 8-10. My GP caught it right away and ordered blood work and 15 mg of prednisone. One year later I can only get down to 7mg.
My story commenced in 2012. Back pain disabled me, walked like a zombi, could only climb stairs one step at a time. Doc diagnosed spinal stenosis and surgery eliminated most of the problems. Within months of spine surgery, I had a total knee replacement, and recovered pretty well. Still had lumbering walk and chronic back pain, which I thought was arthritis.
In late July 2013, I got an upper respiratory infection, and my doc prescribed prednisone for 2 weeks. Within a day of my first dose of prednisone, My pain and stiffness evaporated. My friend said that my pain must be caused by inflammation, because the prednisone eased it. Within 10 days of Ending the prednisone treatment for my URI, my pain returned with a VENGEANCE!
September 2013, i woke one morning unable to turn over in bed. Could not pull the duvet over my shoulders.
Thought I had the flu, hurt all over. Pain a 10 on the scale.
Out of bed, the functions of daily living were painful, beyond painful.
I could not brush my hair, fasten my bra, reach around to put my arms in shirt sleeves, step into bath tub, climb stairs, get in and out of car, stand up from seating in restaurants (without help). The list is long.
My pain started in shoulders, at a 9-10 whenever I tried to raise arms. Pain progressed to butt muscles, feeling like serIous post exercise soreness, but not going away.
My upper back muscles felt solidly spasmed, and my lovely chiropractor applied heat and massage to temporarily relieve some of the pain.
Finally, I got to my GP, who took one look and said I think you have PMR.
Referral to rheumy took 6 weeks. I finally got to see her and she ordered blood tests, and said to return in 3 weeks, as she was going on VACATION! I burst into tears, nearly hysterical at the thought I had to wait another 3 weeks for prednisone.
She relented and gave me a trial run of Prednisone! It worked! Within hours of my first 20 mg dose, I was nearly pain free.
My bloodwork was inconclusive, as it continues to be. No raised markers.
That was 5 and a half years ago. My pain level fluctuates between 2 and 10 on my scale.
I am a slow learner, and rarely accept that I am experiencing a flare until it really knocks me down. My pain is primarily in my biceps and shoulders, with lower back pain. Sacroiliac joint pain is the most recent addition to my woes.
PMR has seriously impacted my quality of life. It is difficult to walk any distance, sitting or standing for lengthy periods cause pain. Periods of "brain fog", depression, cognitive slowdown, memory lapses, and pain have all caused me grief!
I take frequent rest breaks, use otc Paracetamol and prescription pain meds.
Its hard to deal with the chronic recurring pain, and it wears on my good disposition.
Originally my pain started in my left shoulder and then spread to my right. Shortly after it affected my neck and collarbone. I mainly had pain at about level 5 or 6 with minimal stiffness. The pain was constant, never really waning. After about 7 months, the stiffness set in. Then the pain and stiffness started to spread to my back and ribs. Another couple of months and it spread to my hips. That was about 2 months ago when I was finally diagnosed. In the last 2 months the pain and stiffness in my hips, buttocks, upper thighs, etc, made me unable to sit, ride in a car, or go up and down the stairs or get out of bed without a lot of work. For me the pain was pretty high (6) and consistent, with little relief. I just started on prednisone a week ago, with a lot of relief for my lower body. Not so much for the upper body. My doctor is upping my dose a bit.
For about five years before diagnosis shoulders painful. Found it difficult to reach up to close boot of the car. Dr diagnosed torn rotator cuff. Then on the day after my 70th birthday the pain moved to my thighs and pelvic girdle and found it difficult to move. Had to roll out of bed. Pain about 6 out of 10. A GP, not my own as it was a Sunday morning said "you have Polymyalgia Rheumatica and gave me 50mg of pred to take in two doses. Well after the first dose I could climb a mountain. I made an appointment with a Rheumy I knew previously and she admitted me to hospital and gave me iv steroids and difene injections for four days. Also blood work which shows ESRand CRP raised.Discharged with a starting dose of 20 mg of pred with instructions to taper by 2.5mg a month
She had planned for me to make many return visits but at 200 euro per visit I had other plans especially after finding the two forums HUand PMR/GCA. Over 4 years managed to taper to 3mg using the DSNS method and then ran into a brick wall with fatigue. On advice from these forums I asked for a a Synacthen test which showed my Adrenals stunted. On 5mg of pred for life and wearing a medi alert bracelet. Have a good quality of life 5 years after initial diagnosis.
New year 2O15 experiencing more and more morning stiffness and difficulty walking. Increased until couldn't get off the bed pain 9. Young Dr diagnosed very quickly but took 6 weeks to eliminate other causes during which time I was going out of my head with the pain which was not well controlled with Naproxen. Continued to work, Lord knows why. Some of the most severe pain was when pressing the car accelerator. Diagnosis after about 6 weeks and put on 15mg pred. Instant results went from 90 to 19, fantastic. Since then have got down to 2mg but then always flares. flare pain localizes usually stabbing pain in shoulder blades but have had it in buttocks making it virtually impossible to stand Pain 8. Would day most of the time between flares I'm 2-3 painwise. Have made constant effort to reduce stress, improve diet and have been very lucky to maintain pre diagnosis weight, because I have mainly been below 7mg I think. Other issues have included Plantar fasciitis, and at min Trochanteric Bursitis which is very slowly improving but massively limiting. Finally I'm reducing my work hours as realise I'm contributing to my stress by continuing to work do much. Only the long teaching holidays have saved me from total collapse. I'm going down to 4mg pred at min and going to follow DSNS. Never ever thought this would take so long or be do life limiting.
My PMR journey began in mid-July 2018. Biking 13 miles daily, optimal weight, teaching Middle schoolers language arts, and having gone through a physically exhausting move (solo) packing up our condo was not a problem. (My husband thinks I was exposed to black mold when leaving old place). Unpacked 70 boxes, set up new condo - no problem. Then mid-July, 3 weeks later, I felt like a ton of bricks landed on me. Okay, just fatigue from stress. Not so quick. Both hips hurt and extremely stiff. As former athlete and coach I thought I had strained my hip flexors from overuse and biking. Toughed it out by stretching more and Ibuprofen. Then extreme night sweats began. This lasted for a month. I too walked like Frankenstein. Summer time, so okay to lie around. Then shoulders locked up with extreme pain. Unable to lift arms. On to primary physician. Then to rheumatologist. Ruled out (finally) lupus, RA, cancer, etc... extreme inflammation and extremely high platelet count. 20 mg of Pred worked great. Tapering ever since. Dealing with cruddy a.m. stiffness and fatigue. Must choose what activities I do because of limited zeal and energy. Limited social contact because everything is a chore. Platelet count still abnormal. Yikes.
Nov. 2018 CRP 15.0 (0-4.9 normal); Sed 16; platelets 445
Feb. 2019 CRP 4.9; Sed 3; platelets 432
Last labs at this time. Does everyone have abnormally high platelets? Still aching and tired. Just down to 4 mg of prednisone last week with goof of 20 mg at least one day.
Rheumatologist not seeing me till mid-summer. It sounds like I am going to have this for quite awhile, it sounds exactly like everyone else has the same symptoms. Just glad it’s not lupus.
Take care and let me know what you think. Thank you.
I’m a 65-year old Montanan, diagnosed with PMR at age 64 in Feb 2018. Unlike many on here, I knew about PMR because my mom had it, but not till age 80! I wish I’d paid more attention to her symptoms and treatment but we lived far apart and saw each other only 2-3 times a year. She complained of “weak legs” and couldn’t get off prednisone. She developed Type 2 diabetes and avascular necrosis, and had a hip replaced. So I was very afraid of prednisone.
I don’t know what triggered my PMR. One day I was normal, the next day I was 20 years older. Could hardly get up from sitting on the sofa and could hardly walk for a few steps. I had trouble getting dressed. Getting out of a car was problematic. Both hips and both shoulders were affected.
“Bilateral and symmetrical”, the hallmarks of PMR, but until my doctor’s appointment 3 weeks later, my imagination ran wild with what it COULD be: lupus, Lyme disease, rheumatoid arthritis, psoriatic arthritis, MS, fibromyalgia... Both my sisters have had auto-immune conditions, but not PMR.
My doctor gave me an immediate diagnosis and said she has had many patients with PMR. My ESR and CRP were both elevated, but not extremely high. I went home with prednisone that day, with instructions for tapering to zero in 11months. (My initial dosing of prednisone was 15mg for 3 weeks, the 2nd month was 10mg, then dropping 1 mg per month to zero on January 1st 2019.). A fast taper by UK standards, but “typical” according to my American internist.
My CRP dropped from 20.8 on diagnosis to <2.9 one month later and has hovered around 12-14 since. ESR was 40 on diagnosis, 7 one month later, and since July has hovered at 4.4 to 4.2, a tad high. (I plan to be re-tested at 6 months post pred.)
I was “cured” by prednisone, with immediate relief of all symptoms. Pain was never terribly high for me, extreme stiffness has been my major issue. I also never suffered “deathly fatigue”, or really any kind of fatigue. Throughout treatment and since, I have been able to do all my normal activities, though I deliberately skied less difficult runs (for fear of falling and not being able to get up), and I hike more slowly and maybe not quite as far.
As far as side effects go, I had almost none. Rosy cheeks, perhaps a bit fuller, brought compliments on my appearance. I watched my food intake like a hawk and only gained maybe 5 pounds, which is gone now. I did have alarming hair loss maybe 9 months in, but regrowth is occurring so that’s good. My husband said I was pretty cranky while on pred, but I wasn’t aware of a mood change.
After ending prednisone Dec 31, 2018, I continued painfree for several weeks but then started having a three-day cycle of bad days with “creaky hinges”, and extreme stiffness on getting up from sitting, a day of aches and tiredness, followed by a good day. A real roller-coaster of emotions. Am I “cured”? Is it relapsing? Was it never in remission?
I acquired “new” aches and pains in elbows and wrists (carpal tunnel? ulnar tunnel?). My outer thighs are sore - bursitis? Tight tendons? And I’m still stiff getting up from sitting and getting out of the car. But NSAIDs like Naproxen help with the pains, and some stiffness seems to be my new normal.
Around the third month post pred, things settled down a bit and I started feeling more confident that I’m getting better. My muscles have wasted somewhat during the illness and treatment, (reminiscent of Mom’s “weak legs”) and I take care to pace myself. If I overdo it - e.g. cleaning up the planter beds, crawling around under the bushes picking up pine needles - I pay for it with a bad day or two.
I am most bothered by my wrists now and may end up asking for a referral to a specialist to find out if I have carpal tunnel or OA in those joints and other parts of my body.
Reading this forum has been most helpful (wish I’d found it much sooner). I have learned of many potential triggers that COULD have caused my PMR onset: root canal, Zostavax shingles vaccine, flu shots, bad fall with bruising, loss of loved ones, etc. but the timing was wrong for all of them. Guess I’ll never know.
(But I’m guessing my angst over Donald Trump is a contributing factor!)
I was diagnosed with PMR in Oct of 2016. I had had an extremely stressful event which coincided with starting on statins which I took for a month. After I discontinued them, the side effects stopped for a while but came back with a vengeance after a few weeks. The symptoms were extreme fatigue, malaise, wobbling gait, pain in hip girdle and shoulders and worst of all waking up feeling so stiff and in pain, it felt like what I would imagine coming out of a long coma after having been run over by a vehicle would feel like.
20 mgs of prednisone did the trick, I felt much better a few hours after the first dose.
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