I was just recently diagnosed (one week ago) with PMR. I had all the classic symptoms. Both my shoulders and my hips. Also affected my hands greatly at times. Got so bad I couldn’t get out of bed without intense pain or even roll over in bed.
It took a long time to figure out what the hell was going on with me as I have never had any medical issues to speak of, I am on no medication and generally never see a doctor. Eventually ended up in the ER because of the symptoms you all know of. I had never heard of PMR prior to this and I’m still trying to wrap my head around this disease. The doctor in the ER never even contemplated PMR as a diagnosis assumably because of my age. He was leaning toward a degenerative discs in my neck causing nerves to be pinched affecting my shoulders and arms. This of course didn’t explain any of the issues I was having with my hips and walking. Would you believe it took a local physicians assistant, not an MD to actually get it right I responded immediately to prednisone 30 mg dose he prescribed. I am now just trying to figure out if there is anyone out there that has dealt with this anywhere near my age of 46. I would like to assume that my journey with this will look a little different than most on this site given the age difference. Of course I could be very wrong on that. Thank you in advance To anyone out there that has any advice for me as I seem to be groping in the dark with this “lovely” new development.
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RWH-
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It is pretty unusual but we have had people in their 40’s before. With any luck you won’t have the co-morbidities to cloud the picture which is bound to help. Well done that physician’s assistant. Welcome to the site - it is a great repository for advice and support. Ask your questions here, experienced people will answer.
"I would like to assume that my journey with this will look a little different than most on this site given the age difference"In what way?
My symptoms started at 51 but I wasn't diagnosed until nearly 57. There have been people in their 40s on the forum in the past but I don't THINK there are any around at present. There are quite a few who were like me and it appeared in their early 50s.
Different from the perspective that I have no comorbidities associated with advancing age. I’m not even close to being overweight. I am extremely active with the work I do and at home. ( currently building a new home from the ground up ourselves ). I could be completely misguided on this, but my hope is that under the circumstances this disease will be easier to “deal” with and ultimately beat than if I was in my 60s-70s.
I was 51, at the gym 5x a week, only slightly overweight, ate a healthy diet and no co-morbidities. After 15+ years I still have symptoms if not on enough pred. There are others with a similar story. It doesn't follow I'm afraid.
Well I am truly sorry to hear that you’ve had quite a tough road. But I am here at the site for the truth and not a fairytale, so I thank you for that. I wish you all the best In your battle. I guess time will tell with mine.
I was diagnosed by my PCP at the age of 48. I was unprepared for the fight that would follow with the rheumatologists I was referred to who refused to agree with the diagnosis due solely to my age. They wanted me off steroids instantly and on RA/cancer drugs. It was a two year struggle and I finally went back to my PCP and begged him to take over my care. He agreed. Prior to my diagnosis, I had lost 100 pounds, was working out at the gym regularly and in the best shape of my life. I woke up one morning and could barely walk. I thought I injured my groin at the gym. ER took xrays and sent me to PT. That didn’t help after a month so went to my PCP. He immediately suspected PMR because at that point the pain was in my neck, shoulders, arms and knees. He tested everything from Lyme to hormones to thyroid. My ESR was the only marker out of whack. Steroids helped in hours with 80% improvement within 24 hours. I am now 50 and it has taken me 2 years to get from 20mg to 3.5/4. Last night was a bad night so today I will take 4. It is very slow going at this stage but I am happy to be under 7mg and will take it as slow as I need to. One caution for people who are active when dx. You will start to feel better on steroids. But remember, you still have an active disease. Slow down. Give yourself grace and rest more than you think you need to. If you get referred to a doctor who says you are too young, find one with an open mind.
Hi RWH, I think you must have been reassured regarding the age issue, you were fortunate that your condition was recognised. Everyone wants to get better and be off steroids as quickly as possible and there is no apparent reason why this would not be the case for you. As you say, you are younger without other health issues, so one would expect it to be the case. It's important to manage our expectations as well, since a lot of people were bitterly disappointed or rushed into tapering only to experience flares because they were told that it would only take 12 to 18 months. You will find a lot of useful information here and your body will teach you a few lessons along the way. I believe that there is a lot you can do to help yourself, so do, and don't lose heart, you will get better, just be patient with yourself.
Hi. I'm 50 "technically" in the age group just. I too was told probably pinched nerves discs etc. Long story on my initial post Re how I got to this Point. I have read a few stories now of people younger than me more your age. There are people on here much more experienced who will help you better. I really wanted to say I understand how you are feeling as in a little overwhelmed. Initially I was relieved wasn't the other stuff i was being tested for but this weekend have increasingly felt a little upset that i have something to deal with at all and a bit put out that I'm getting more support from people I don't know than people around me where it's not occurred to them to ask how I feel about having being diagnosed with a long term illness. Sorry if that sounds self pitying. Trying to explain that I think it's normal to feel flummoxed. We will all get one another through
Hi Buttonshutton. I was diagnosed last October, and am still feeling a tad self-pitying. I suppose it's natural, having been really healthy, with no issues all your life, to suddenly have to deal with an illness like this. I'm 77 by the way.
I was very depressed, running to the local shop for chocolates and biscuits, until about a month ago our lovely Nurse Practitioner put me onto a mild anti-depressant. She was quite amazed at me telling her that it was helping me lose weight!!
I was 47 on diagnosis and symptoms started when I was 46. So yes whilst unusual it is possible.
I would add that the younger you are the more likely your symptoms are caused by something else that mimics PMR so it is essential to be properly investigated. Just a response to steroids is not confirmatory enough.
I was a very fit individual, running often and this has changed for me. I don't think age makes much difference to the disease progression but everyone has a slightly different journey in tapering off meds and flare ups along the way.
I'm sorry to say that even if you're younger, you will still need to pace and listen to your body. You might find that you have to reduce the activities you do and spread them out. Avoid stress and eat well. Reducing sugar is generally really helpful.
In fact - I suspect pacing is even more important for younger patients. Trying to fight through the fatigue or pain does seem to make things worse - as it does in ME/CFS. And most younger patients have to work - there are lots of advantages to being older
Hi RWH. 56, last year, for me, so also at the low end of the spectrum.
The advise on this forum is very helpful. I think you are possibly right that being younger is going to be helpful....ish. Inasmuch as there will be less add-on illnesses perhaps. Time will tell.
Loss of control over what you can and can't do is frustrating. Ditto trying to explain to work colleagues and friends. Not many people have ever heard of PMR. I tend to just tell them its a variant of arthritis which seems to shut them up.
Cut down on booze and pack up smoking would be my advice.
Keep moving but don't over-exert. I have had to pack up golf as there is no way i would get round the course for example.
I get very tired and feel like i have aged about 20 years for much of the day. Basically its a s##t show, but hopefully over in a few years.
So sorry to hear your story. You are young but sadly these diseases just don't care. You've come to the right website and you'll feel very supported throughout your journey. I always recommend to newbies to read Kate Gilbert's book PMR/GCA it helped me enormously at the beginning - until I found this website. We're all here for you. You will get frustrated with these diseases and sometimes you will feel bewildered. Take great care of yourself. Wishing you well xx
Not only setting up the national charity - but she was the originator of this particular forum. There were already 2 others, one set up by the NE of England charity but this is now the biggest and most active,
Yes!!! Kate Gilbert's book was a brilliant, super informative, no nonsense read. I read it in a day.... couldn't put it down. I'm 64, diagnosed in April, responded immediately to the miracle drug Prednisolone, and now tapering from 15mg. This forum is equally brilliant 🙏🙏
Morning. I was 51 when I had my diagnosis, started on 20mg pred and helped to reduce the steroids with methotrexate and then leflunomide. I'm 6 years down the road and on 3mg of prednisolone.. almost normal!So so painful in the beginning and nothing touched it until I persuaded GP to try pred. I worked for a charity at the time and their help desk thought I might have PMR.. bit of luck definitely.
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