I was diagnosed with Fibromyalgia by Rheumatology late last September after the usual tick boxes had been ticked It started with waking one night with numbness in my fingers three years ago and progressed to pain and stiffness lasting hours on waking, poor sleep, having to dig my heel in to the mattress to turn over due to neck pain, painful shoulders, struggling to stand on account of the pain in my hips Feeling like I'm carrying a heavy weight around and struggling with tiredness all the time I have had an MRI of my spine and pelvis in November 2021 which were fine and several blood tests, also unremarkable I was 49 at the time when the Rheumatologist said I was far to young to have PMR She was absolute about this I explained my sister had been given prednisolone for similar symptoms as her doctor said it sounded like PMR and inflammation also did not show in her bloods My sister said she was around 54 at the time of diagnosis and responded well to the steroids She started with symptoms at 53
I dont want to appear to say I have been wrongly diagnosed but I have been given Gabapentin and it does nothing to ease my symptoms My sister says a lot of my symptons were her symptoms before her diagnosis and If she had seen my Rheumatologist at the age of 54 would she have been told she had FM and be still in pain?
I'm 52 and I have one last appointment with Rheumatology and would like and convince them to at least try me on a dose of steroids to see if theres any impovement in my symptoms
Thanks for listening guys x
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Northernnugget
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I'd say there is a chance this could be PMR - Prof Sarah Mackie who I would class as the UK top PMR guru says she has several patients under 50 - and it is known that younger patients are more likely to present atypically. I started the symptoms of PMR at 51 but was never diagnosed because "the bloods are fine". They probably weren't for me - but ESR running at 16-18 during a major flare when I could barely move wasn't considered significant. MY personal normal is about 4.
Where in the UK are you? What hospital? Is a private consultation an option? She is wrong in her beliefs - we are working on training GPs, Covid rather got in the way, but there is a desperate unmet need amongst rheumies too.
Thank you for the response Im a Yorkshire lass living in the south I had an initial consultation with a private Rheumatologist who referred me back to the NHS but she remained my consultant and she was the one who said and quote "You cant possibly have PMR you are far to young" I will be seeing a different Rheumotologist for this appointment at Torbay hospital He was the one who read through my notes and gave me the diagnosis then referred me back to my GP for pain management My sister lives in Sheffield her PMR is managed by the Hallamshire hospital x
Is she happy? We like to know about the good ones! Our SheffieldJane travels to Leeds!!! They don't come better than Prof Mackie but she is part-time research as well as clinical and that makes her waiting lists a bit silly.
I know this doesn't constitute the 'Michelin guide to good rheumatologists', but I have seen Dr O Sharif, in Huddersfield, and he seems very knowledgeable on PMR.
Actually, on my first visit, he had a medical student from Univ. of Leeds, so there is a very good chance he knows Prof. Mackie.
So I had my appointment with the Rheumatologist this afternoon I was awful and felt I just garbled my way through I made him aware I had just come from a night shift He even told me I didn't look particulary fresh He was the same Dr who gave me the diagnosis of Fibromyalgia He reiterated our last meeting in September and then asked if all was fine with the Gabapentin I explained I didn't feel this medication was working for me and would it be possible to look at PMR again? He went on about not giving such a diagnosis without inflammatory markers though he did agree that I'd now become the borderline age group at 52 I explained about this Forum and how useful it had been particulary in clarifying Drs were using steroids to treat symptoms of PMR in younger pts with unremarkable bloods I even gave the name of Sarah Mackie and was about to present the print outs of this thread when he started doing a physical exam and the moment passed I went on to ask him if it would be possible to be prescribed two weeks worth of steroids to see how I would respond He said he wouldn't do that on account the body becomes reliant on them in the long term and mentioned the side effects The same as Gabapentin then I laughed So in the end he suggested I should go for a PET scan and Apparently I should get an appointment within the next 4-6 weeks In the mean time I'm going to taper down the Gabapentin He did offer to up these lol x
I cannot believe that he thinks you are dependent on pred in 2 weeks - that is rubbish. And that he thinks it is fine to leave a patient in pain rather than trial pred and allow its use if it works - which it won't if what you have is fibro.
At least you have the offer of a PET scan - it's the nearest to definitive diagnosis there is but once the patient is on pred it is also very unreliable. There has been a grudging admission that someone who'd been told they "couldn't possibly have PMR because they were too young" did in fact have it. We hope they learn ...
I had a lot of trouble getting a diagnosis as I was 52 when my rheumatologist first started looking at it. I think mine started when I was 49. He said I absolutely didn’t have PMR because I’m too young. My GP had already given me a trial of Pred which got rid of most of the symptoms within 12 hours but still, rheumatologist said no, and stopped the steroids. After several months of assuming my pain was related to my Ankylosing Spondylitis and my being practically bed bound, he ordered a pet/Ct scan to “rule everything out”. The results were definitively PMR. I also had high inflammatory markers in my blood. My rheumatologist said he’d never seen it in someone my age on a ct scan. Interestingly, I went to see a private rheumatologist who I used to see on the NHS, for a second opinion. He said that they are not allowed to diagnose PMR in anyone under 50 and under 55 they would only do so if it was glaringly obvious. I think if you’re in the UK and are under the NHS, you’re going to have an uphill struggle. However, if you can convince your GP to give you a trial of Prednisilone 20mg for a week and it gets rid of most of your symptoms, that will be good evidence to present to the rheumatologist. Although, my rheumatologist said Pred will help any pain caused by inflammation and that it still didn’t mean it is PMR. I’m so fortunate to have eventually been sent for the CT scan. All the best to you. X
"He said that they are not allowed to diagnose PMR in anyone under 50 and under 55 they would only do so if it was glaringly obvious"
I think that is utter and complete rubbish - it isn't a case of "not allowed to" - Prof Sarah Mackie is very much NHS and told me she has quite a few under 50s and that is just in the Leeds catchment plus a few outliers whose GPs were willing to try referring to her. And I query how often he has had the courage of his convictions in a patient presenting as typical PMR apart from age to send them for a PET-CT.
They have GUIDELINES but in fact those criteria were never intended to be used for diagnosis, they were criteria for forming more standardised cohorts for studies. And as they happily say - Guidelines are only guidelines, not legally binding ...
I was 54 when I was diagnosed so a little bit older. I was going back & forth to see different GPS who all came up with different possibilities. My mobility was decreasing week on week. Frustratingly, there is mention in my GP notes fir 6 months earlier of query PMR but this was not acted upon
I then saw a rheumatologist privately… best £240 I’ve ever spent! He said I was definitely very young for PMR but that everything was pointing towards this. He wanted bloods taken a few days later and then I had to start a 5 day only course of 15mg predisnolone. What a difference. They were a miracle drug.
My bloods were all normal. After the 5 days, the symptoms gradually returned. From how well I responded to the predisnolone, the Rheumy felt it was PMR and I have been on them since (now tapering).
I would ask if you can try a short dose of steroids particularly with family history also
I'm most definitely no expert, but if it waddles like a duck, quacks like a duck.... I was diagnosed with PMR in Jan 2022, but experienced all the pain you refer to, for about 6 months before that and was diagnosed with "old age". I was a healthy, active 71 year old. The pain did start immediately after my first Covid shot in May 2021 and progressed to August '21, about 10 days after my second Covid vax, was when the proverbial (expletive deleted) hit the fan. Still undiagnosed until I insisted upon a blood test for RA, at which time the CRP was 42. Now-retired GP finally got me an urgent referral to a Neurologist (wish he was still mine), who immediately put me on 20 mg. of Pred and overnight, I was able to move my right arm over to the nightstand (which I had been unable to do, or for that matter, unable to move in bed at all), and the rest of the pain went over the next couple of days. Then after about 5 months, got handed over to the current Rheumatologist. Have only seen her twice since last May 2022, and I'm now presented with symptoms of GCA, tested and still undiagnosed definitively. Currently at 60 mg. Pred and holding for a bit.
Hi. I was diagnosed with fibromyalgia in the 90's. It took several years to.get a diagnosis but when I did it fit and I started on tramadol which I still take. Back then there was a lot of debate about fibro, if it was real, yada yada. Now as I read posts hete it's becoming the go to.diagnosis. The way you describe you'll pain snd the locations of that pain does not sound like fibro. My PMR has kicked up my fibro flares and I can still tell the difference between the two. Your description of your symptoms is how my.PMR feels. I hope you are able to find someone with a clue who will treat you and get over this magical age thing. I am sorry you.are going through this.....no one wants to do the dance of the seven veils when they are in pain and a treatment is at hand but stupidity is in the way. Hang in. Good luck.
Hi I’ve just been diagnosed aged 51 with no blood markers. GP gave Pred on a ‘hunch’ and so far it’s working for me. NICE guidelines do say PMR should be considered so can you go back to GP for another opinion? Good luck and keep fightingx
my first boutique of PMR was when I was at 50 yo . At the time I didn't know and proceeded with total hip replacement... the combination of surgery and PMR sed rate topped out at 90....pretty uncomfortable..settled down after a few years.
More than 2 years ago I was diagnosed with RA by an incompetent Dr. because I awoke one morning with each hand looking like a boxing glove, literally. My RA factor was neg and inflammation markers were not taken at the time at the walk in clinic, because their job was to get my hands down to size and to refer me to a rheumatologist for further tx. He treated me for RA with MTX for about a year I often felt terrible with extreme malaise. MTX? I told him I think this was a repeat of the PMR I had about 15 yrs prior in my hip girdle, but this was in the shoulder girdle. I eventually started with a new rheumy .We argued at each visit and I think he disliked me as much as I did him. FINALLY he gave in and started me on my path to getting better. It is now 2 yrs later and I am down to 2mgs Pred, no MTX and feeling much better. Boy once you're misdiagnosed its hard to correct the situation. So we get along much better now and I asked him last visit to remove the RA diagnosis fr my records because it is obvious that it was a mistake and I didn't want it following me around. He said no, he has recorded my diag as RA/ PMR. He went on to explain that rheumatology is an inexact science and often open to the interpretation of the Dr. So keep up the fight or get a different Dr. They need to learn to listen to the pt. And BTW I think I was in my mid 50s with my 1st episode ( Took 2 years) And beware of "false negatives."
Originally suspected for PMR at 48 after 2nd Covid shot. My inflammatory markers were elevated. Went through a full work up. Nothing stuck out according to 3 separate Rheumatologists. Placed on prednisone. Symptoms went away. Since they did not belive it was PMR, they had me stop the prednisone. Symptoms returned. Turned 50 couple days ago. Now they describe my symptoms as "PMR like", but not definitive. As of yesterday, my Rheumatologist wants to keep seeing me because I'm, "complex". Perhaps a case study for her to be published, lol. Take NSAIDS with minimal relief. I still suffer.
Hi, I see you have lot's of replies but wanted to add that I was 49 when diagnosed and my bloods were inconsistent and generally don't show inflammatory markers. I'm struggling at the moment with a flare or relapse and they still look at my bloods for guidance, rheumatology nurse said, they have to follow medical guidelines... I'm getting better at challenging this.
I asked my Dr if I could trial a dose of Pred after two months of feeling terrible and experiencing pain like never before.
Had the usual scans etc as well, couldn't wait any longer and the Dr agreed. It helped at the time. Definitely worth asking, treat the patient and symptoms first...good luck.
I was diagnosed at the age of 50 by my GP and a Rheumatololgist agreed. But my symptoms started at the age of 43 after which I was prescribed various meds like tramadol, amytiptiline, pregabalin which did not help. No inflammation markers. I was finally prescribed Pred at the age of 50 and it made a massive difference.It's another matter that three subsequent Rheumies did not agree with the diagnosis mainly because of my age and lack of inflammation markers.
It can be a struggle to get to the bottom of things and now long covid is yet another option on the table.
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Does anyone else have problems with pain in knee with pmr?
Is it steroids or PTSD
years of yo yo 
How painful can PMR get ? 
