Thinking about how long I had PMR symptoms before my Diagnosis, the best I can come up with is about three years. Never heard of PMR until my Diagnosis. I thought I had age-related arthritis like I was given to understand many older folks get.
My former Dr. had zero interest/help when I complained of it to him, so aspirin and Paracetamol it was. Not very effective either! Finally, when I could barely walk, I complained again to Dr. who found PMR on his computer!
What about you? Was it years before you got a Diagnosis too?
Our Moderators might be able to pass such anecdotal information on to their Rheumatology contacts and possibly save others from years of suffering.
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Both PMR and GCA initial symptoms are similar to a lot of other illnesses - and it’s understandable that many doctors assume that muscular aches, fatigue etc are typically age related - and just something to be endured or treated with painkillers.
Both illnesses are very often diagnosed after many other options have been dismissed - there is no specific test for either .....so it’s often a case if “I can’t find anything else.....perhaps it’s PMR”.
This charity has been trying for 20 years to pass on information to those who need to know - with a lot of hard working determined personnel - with some success - but I’m sure all would agree more could/needs be done.
However, in the great scheme of things, there are many illnesses with much worse outcomes - and that’s not including the current pandemic. PMR may be very debilitating pre diagnose - but it rarely kills.
Me - GCA undiagnosed for 18 months after losing sight in one eye.
Good idea...we often have a little "poll"...or review good time for it.
I think I had my first symptoms 12 to 18months before dx. Initially. My feet starting feeling like they were bound and I was walking on small pointy pebbles. Then I had pains in my bicep on right side....that was said to be a torn muscle as it happened a few weeks after a fall. Then my neck was very stiff and painful...dr sent me to physio...no help. My thighs started aching and then both arms and shoulders. The worst thing though was the debitating fatigue that I had for about 6 weeks before I went to the dr. The Dr again didn't look interested until I said my shoulders and thighs were hurting and instantly prescribed pred and bobs your uncle.
Your report of a fall intriguing. A walking companion and I both developed PMR after trauma, she a year earlier. She had fallen, her G.P. Said trauma, and I had to drag a too heavy garden bin uphill, Dec. 2019, damaged my Shoulder. Gradual pain onset and two weeks later I was rigid on waking, total agony. Osteopath no use. The GP agreed my trauma theory although they usually suggest a viral cause. Very sad that Dorset lady had to lose sight of an eye and still lack diagnosis. My father had GCA after a nasty fall so I also wonder if there’s a gene link. Anyway I am doing well on Prednilisone, started on 15mgs 14th Jan., cut to 12.5 9th March, bad headaches a concern but seem O.K. now, and may try 10 mgs. soon. Having to isolate for 12 weeks a big drag though, will have to find some one to fetch my meds.
Your mention of feet is weird as you are describing the start of my peripheral neuropathy some five years ago. It’s up beyond my knees now plus half dead hands, always dropping things, get cramps etc., mostly manage to stay upright, a struggle, hence my tag, botcher! Would like to knit but can’t, fingers twist.
I count myself lucky there are steroids, and love gardening when no rain. Bit chilly round my backside today, what a gale. Thanks for moderating, keep well.
I have PN which is mid to top of calf. It was a slightly different pain as it eased when I stopped walking ...PN for me is there most of the time but yes it could well have been the vasculitis that preempted it.
I think physical and emotional trauma arise in many PMR stories. Sometimes when people see the symptoms others talk about they realise they had them but hadn't linked them to PMR.
I am sorry the PN is creeping over your hands. I presume you have tried bamboo needles...my mum had to use them for her wrists and fingers due to osteo arthritis.
It was very chilly round the backside today..I had to go do some rescuing in the garden and was my first day out for over a week and that was a quick walk with the dog in the sun. Brrrr🌻
Thanks for suggestion, I’ve only tried steel needles, but my hands cramped when sewing up as well. Is there some evidence that bamboo stops cramping? I may take up sewing again on my trusty Hand op. Singer machine, fortunately had it serviced last year and have some materials put by? It will help pass the endless stretch in front of us all - patchwork?
By the way I’m lucky just to have deadness, not pain in legs and arms apart from the very severe cramps in calves. Used to have trouble with foot cramp when driving, but I just do short distances now. Horizontal Positions are worst, esp. in bed and bath, v. Uncomfortable, like you walking’s best for me too,
if there’s plenty of space to walk briskly, that’s best. Crowds are a nightmare, people often may think I’m drunk! but it’s obviously not this year’s problem. The predictions are very sad. Bye for now.
Yes re needles....they were recommended by a Dr years ago and both her and my grann were able to knit for much longer..sadly I am only a knit one perl one....mum cast me off and/or do the collar cuffs knitter. I have wool to remind myself of her but she has been gone a while now.
You take care and stay safe. I am confined to quarters!🌻
Mines been gone 14yrs and I have not learned yet. The you best in their pre teens when she was alive are jealous of the cardi etc. I am digging a couple out as pressies.
Three people I know have had significant improvement to peripheral neuropathy with taking a natural B complex with at least 100% of all 8 essentials 2-3 times a day. Neurotransmitters are made of B vitamins and they are also needed for nerve healing. The metabolism of sugars/carbs and medications uses up B vitamins so supplements are very important. Many people need B12 injections because of poor GI absorption.
Cramping may be relieved with natural E-complex (NOT synthetic dl-alpha) and magnesium.
So PN causes cramping in calves and hands? I have experienced those symptoms and have been trying to fgure out the cause. I have PMR and am currently on 8 mg. daily of prednisone. I keep trying to figure out if caffeine is the culprit since I don't have the cramps every day. I usually experience them after I have returned home after a long walk, longer than usual.
Probably about 14 months. I thought, as did my useless doctor at the time, that it was worsening osteoarthritis. A new doctor diagnosed me almost instantly.
Same here. My the old one thought it was LUPUS. My new big time doctor diagnosed me with PMR. I asked him about PMR and he answered with a smirk: Oh, old women always get that! I was shocked, I was 58 and he was at least 10 years older wearing a tipe of maflioso suit that was 2 sizes too small! So, I fired him on a spot, found a nice woman rheumotologist and still with her 10 years later.
It took about five months, as originally thought I had done something at Pilates. It took an MRI scan to pick it up. Like you I had never heard of PMR and because. I am in my 50's it did not immediately spring to my doctor's mind.
I was diagnosed almost straightaway after waking up rigid with pain, I’d had a series of viruses then two chest infections in the previous weeks. I was given a short high dose steroid course to treat my chest, and magically all the pain disappeared. CPR was 8 at the time. However all the pain came back after the steroid stopped but I was asked to wait a week for a repeat cpr as it wasn’t high enough to fit in with a dx of pmr! Ouch. It came back at 80 so I started 15mgm Pred.
Still trying to reduce to 12.5, it seems every time I try I get a cold which brings on a mini flare. The one good thing about the lock down is less viruses coming into the house.
You might want to try a slower taper 123mossie which may work well for you. Not everyone is able to taper from 15mg to 12.5mg in one go. I’ve had to taper 1 mg a month using one of the slow taper plans which you can access via this site. Best of luck!
I was pretty lucky I think, with 3 months to initial diagnosis and another 3 months to taper of and get PET-CT to confirm.
This was in part due to my age, I'm 46 and fit and well, a runner and otherwise no age related arthritis etc therefore this new pain was sudden and obvious.
I was lucky as only about 2-3 weeks. Had very classic symptoms and luckily a doctor friend told me to request a blood test from my GP to check CRP and ESR. Both were significantly raised. First hit of 20mg was bliss. It was the next four years that have been difficult 🙃🤪
I think it was a year - had to see nurse at surgery instead of GP - told I had virus and arthritis in ankle - a year later sent to physio instead of GP and told I had lower back pain. Went to private physio who immediately saw something was wrong and wrote to my then new GP - he knew straight away it was PMR and has been wonderful since Oct 18
I fell on holiday in Budapest last February and fractured my shoulder, took a few weeks to be able to start physio which I was going to all last summer, ever time I went I would complain of a different pain, and also found it very difficult to get my shoulder working again and couldnt understand why it was affecting my other shoulder. My neck hurt, my legs hurt, think my physio thought I was a hypochondriac. I use to walk my dog 2 to 3 miles a night after work, but was finding this more and more difficult to do, my little dog kept looking at me as if to say aren't we going any further. The last 3 months of working in the hospital prior to Dx I was unable to use the stairs and had to use the lift. So it was about 8 months prior to my diagnosis, I had been back and forward to the gp but they just kept giving me Ibuprofen and Zapain, then Naproxen all with no relief. It wasn't until November when it took me over half an hour to get out of bed I phoned my gp who rang me back, he asked me to tell him every thing that had happened over the past few months so I went to town and told him every thing. He was brilliant and told me he probably knew what it was but I had to go straight up to surgery for and urgent blood test. I then had to go and see a doctor an hour later who explained PMR to me and commenced Prednisolone 15mg. By the next day my pains had improved dramatically and for the first time in months I was able to turn over in bed. I went back 4 days later to see doctor and get blood results there was a dramatic improvement and my CRP had come back as 60, my next result was 45 and then a week later down to 6. Unfortunately I have had a couple of relapses since then and was on 20mgs of Pred, now back down to 15mgs. Not brilliant and have not been able to go back to work but I live in hope. I have heard a few people say they developed PMR following Trauma, so maybe there is something in this. I was 61 when diagnosed.
I had a somewhat similar experience. I thought my chiropractor (and me too!) was thinking I was a hypocontriac (sp?). I too had recurring pain in my neck, hips, shoulders and finally thighs. I kept going to my chiropractor and he would work on my neck and that would feel better but then I would return and tell him my shoulder and shoulder blade on the right was tight and hurt, he would work on that and it would feel better, but I would return that the other side hurt.... this went on for some months when he finally told me I needed to have some blood work done. I had to have my GP write the script for the bloodwork and at first I was treated by my rheumotologist for bursitus of my right hip with a shot of cortisone which helped my hip quite a bit. I also took Advil morning and night and that did help me. After some weeks the Advil stopped working. I returned to my GP who felt I had PMR and my Rheumatologist concurred so I was started on 20 mg. of prednisone which was like a miracle in about 4 days. So I was fortunate to have been diagnosed and treated pretty quickly once I got to the point where Advil didn't help me and I really complained to my GP.
Sorry, also meant to mention that when things were hurting I decided to go for a massage at a local mall. I was on my stomach on a table and the guy took my arms and raised them straight up as far as they would go! I was just about to tell him to stop when he released them. The next morning I awoke with my entire body (at least it seemed that way) hurting. It scared me! I didn't know what was going on but felt it had something to do with what had been done with my arms. It seems, looking back, that I had inflammation for some time and then with the assault on my arms, the inflammation kind of took over.
It took 6 weeks for me... First was my family Dr., second and third were sports meds doctors. Each had a week to diagnose. If the problem did not get better ( got worse), I would move on to second and third opinion. What confuse them is that I was training for triathlon and everyone of them thought my symptoms was related to over training. During the fourth week I went back to my family Dr and explain that I have stopped training and things got worse, so something else is going on. He is an excellent Dr and after blood work, he said that he suspect PMR, but he will let Rheumatologist ( 4th dr) to examine me further. More tests, ct scans, MRI to exclude any other reason and finally it was officially diagnosed with PMR.
My first symptoms - stiffness in shoulders so I couldn't sleep with my arms above my head - appeared in early spring when I was still 51 and over the summer it became harder and harder to do step and other gym classes. In the autumn I went to the gym to get ready for winter and skiing - and 2 mins on the cross trainer brought on such horrendous thigh pain I had to stop. I just thought it was me being unfit. I changed gym so I could use a warm pool and do aquafit but although that did keep me mobile it didn't improve the muscle problems, I repeatedly went to the GP over the following 4+ years but always got similar responses: your age, a virus, and then the suggestion of mental health problems. At least he didn't accuse me of fancying him - as one had 20 years earlier on another chronic problem!
After nearly 5 years I finally had the "overnight seizing up" but they still didn't get it. I had another problem at the same time and was, wrongly, stopped from driving. I was housebound. I did however manage to get here to our Italian flat and - miraculously - managed to get up the mountain to ski which replaced the aquafit in mobilising hips and shoulders. The rest of the day I spent in front of the computer - and eventually got a clue as to what it might be. At the end of the season I returned to the UK with my husband and told the GP what I had. But despite textbook symptoms except for raised blood markers (they were for me, but not above "normal range" for a large population) he wouldn't try pred and referred me to rheumatology. The guy I saw was nearer the mark than the first rheumy I had seen - she claimed it was osteoarthritis, of which there is no sign 13+ years later, But he wouldn't have it it was PMR. it was an inflamamtory arthritis despite no evidence to support it and a miraculous respone to 15mg in under 6 hours and return of symptoms in the same time frame after missing the first 5mg dose at the end of a 6 week taper. Luckily another GP got it and provided pred. Which I still need 10+ years later.
It is difficult for both PMR and GCA - the symptoms are more variable than they think and could be a whole range of possible underlying conditions, making diagnosis difficult. It isn't the rheumies who need to understand it - it is GPs. Because it is they who are the gatekeepers. Although it would help if all of them understood a few basics - like no two patients are the same and you can develop it when you are under 60!!! But we are getting there.
Hi, I was 52 when diagnosed only too k about a month as I went from being able to walk forever to struggling to put one foot in front of the other ☹️ I’m interested in the theory about a fall setting it off as my dad fell on some ice years ago and not long after developed pmr and I slipped on the stairs just before I became ill. Is it a coincidence? 🤔
PMR and GCA symptoms started a few days before back surgery almost 2 years ago. Neurosurgery PA and primary care Dr didn't recognise it. Fortunately I then went to urgent care a month after surgery and the emergency specialist diagnosed it.
I suspect that I actually had some symptoms for two years before and I blamed them on an accident when my car was rear-ended.
I have had fibromyalgia since 1984, but after the back surgery I realized the pain and swelling were different and far more immobilizing and exhausting.
I got lucky. I had a serious flu and never recovered from it. I started having pains in my legs and was blaming my osteoarthritis that I have everywhere. Didn't go to the doctor. Then I developed itching everywhere on my body without any rash. Sometime itching is worse then pain so I went to a doctor. He took a blood test and I was diagnosed with PMR. Took 6 month from the onset of the symptoms. The itching was because I was low on B12. It took me going crazy and 4 doctors to establish that.
I am a quite fit and active 70 year old man with no other medical issues and when I got the symptoms of PMR I thought I had a rotator cuff problem so I had physio which didn't work and then went to a specialist who gave me and MRI scan on my shoulder. This all took about 3 months. The specialist told me there was nothing wrong with my shoulder and sent me back to my GP and after a few tests my GP concluded it was likely to be PMR. I was pretty disabled by then. My GP started me off with 15mg of Pres and within 24 hours I was a new man. No-one knows how or why I get this disease but I'm convinced it could have been due to the deep tissue massage I had been having regularly for about 2 months before the onset of the symptoms. The massage was particularly strong and very deep into my shoulders (where I had the worst symptoms) so indicative of some stress-based reaction. Hope this is of some use x
The reaction you describe would have been typical of early PMR, especially if it was together with myofascial pain syndrome, which is more common in patients with PMR. It is caused by the same inflammatory substances as PMR but instead of being systemic they are in the form of concentrations of the cytokine causing knots of hardened muscle fibres as pairs of trigger points in the large muscles on either side of the spine, shoulder muscles, about rib level and in the lower back about where the baby's dimples are. Massage, especially therapeutic or deep massage, typically releases those inflammatory substances - and you feel as if you are flaring.
Thank you for the explanation! I love massages and they feel wonderful when they are happening but the next day I always have pain so that explains it.
I find that keeping well hydrated and maybe a mg more pred always sorts it and then I go back to the usual dose. But I have always used massage for PMR add-ons so expect it may be worse before it is better. Love my massages!
So funny, I loved massages too before PMR. I have been on pred 5 months and have not felt the need for a massage since I don't have any of the aches and pains I had before. Honestly, I am going to be sad to be off pred at some point. I'm on 8 mg now and life is good!!!
I have a very young doctor, I'd say she's in her 20's and she first prescribed muscle relaxants, which I did for 3 months and only got worse and then she came up with the right diagnosis and medication, so although i thought that was a long time, not so when I hear other people and their stories
Probably about 18 months. Had very slight pain in both arms. I couldn’t do my bra up easily and also found it hard turning my head when driving. It came to a head when I went for a 5 mile walk one morning with brother and sister in law( was used to doing more than this but we kept it short for SIL who was having problems at the time with her shoulder so wasn’t very fit) At the end of the walk I felt like I had bad flu and everywhere hurt. That’s when I went to GP. She actually diagnosed it very quickly but felt it was very slight because my blood markers were not significantly raised!! ( about 5 years ago!) Have since been diagnosed with GCA.
I had also had a traumatic incident a few years before onset which was falling down a manhole in the street ( manhole cover had come off and looked like puddle in very bad rain.)
10 months it started with pain in my gluts then down back of my legs then I used to say their isn’t a part of my that doesn’t ache then four month of sheer agony legs ,back, arms, groin and neck .In that four month of my agony I was attending the doctor and swallowing Tramadol ,Codiene, paracetamol and Diazepam they never touched the pain . One week of 20mg prednisolone I was like a spring lamb . I had never heard of PMR before I was diagnosed ( don’t think my did either ) 😳😳
I had PMR for 20 months before diagnosis. Primary care Dr was no help at all. Asked to see Rheumatologist. He had me on 4 different drugs for Arthritis which did nothing for the pain. I finally told me I thought I had PMR, he then said I'll put you on Prednisone. Worked like a miracle.
It could have been as long as 6 years for me if you believe the docs involved in my diagnosis. For those 6 years I was back and forth to a variety of doctors and specialists and had numerous tests to determine the cause of bilateral leg issues. Weak, tender, heavy legs of lead. There was never any diagnosis and I simply learned to live with the situation.
It took 40 mg to get my PMR under control and for the first two weeks I had my legs back and was so excited. Thanks to the normal rush to taper I had a total return of symptoms a few weeks later and had to return to 40 mg. I didn't get my legs back this time and weak and heavy legs have continued to plague me for the last 6 years.
Recent tests and procedures to assess the status of my spine have indicated that compression of my lumbar spine MAY be causing some of the leg issues and I must admit that the exercise routine undertaken in the last few months seem to be helping to some degree.
However, to this day I wonder if the docs were right 6 years ago, and it was indeed PMR.
I think that I had symptoms following a back surgery three years ago. Symptoms lasted for at least a year, with incompetent medics having no clue as to what I had. I finally diagnosed myself, and got a Rheumy to give me a trial of pred. After about a year and a half I am down to 7 1/2, with the usual ups and downs.
My wife's symptoms began in January, 2016. After several referrals to different doctors, including an orthopedic surgeon, she was diagnosed with PMR 5 months later, in May, 2016.
It is tempting to PM each one of you because all of your stories are very interesting! But I suspect that covid-19 will run it's course before that would be finished!
Thanks for an impromptu little reminder of why we are all here. Now you have seen a few stories here, I thought I would pass this on to you. It's research about what patients thought caused PMR. Didn't want to spoil the fun.
Helo. About 3 months. Mine was caused by an adverse reaction to some medication.
My daughter (a Nurse Practioner) spent time trawling thru the net for me and came up with PMR. It took three appointments with Nurse Practioners to finally get some leeway although not a diagnosis. I insisted on seeing a Dr and armed with my paperwork on PMR, she dithered but got me an urgent appointment with a Rhuemetologist. The Rhuemetologist put me on 15 mg pred and a reducing pattern. He also asked why the GP didn't give me steroids. I am 2 1/2 years in and got down to 4 1/2 mg before Xmas then flared. I went up to 8 and am now tapering towards 6 1/2.
At the moment I feel pretty good and have done for a couple of weeks, so am hoping .....
I have had lots of muscular problems for years. All of a sudden 18 months ago when I was reacting badly to massage ( requiring morphine for pain relief) my physio couldn't work out what was going on. It wasn't until I was under the care of an orthopaedic surgeon who said my knee shouldn't be showing the inflammation like it was that I began 8 months of repeated blood tests to finally get a diagnoses 1 month ago for PMR. 2 weeks before this my symptoms escalated to barely being able to get out of bed.
Just three months for me but was the longest 3 months of my life, was very fortunate to be referred to the rapid diagnostic unit at guys. Having said that the first GP I saw just dismissed my stiffness as an arthritic flare, it was my lovely physio we advised that this was something out of the ordinary and that I should request blood tests. Take care all
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