I have been reading your accounts and interactions online and my heart goes out to all.
Your positivity, courage, challenges and despair at times are so very moving.
So thank you for sharing and thank you to the administrators for supporting a platform which is obviously very much needed.
I have been struggling for over a year with this now known condition, not having a clue what an earth had happened to the energetic, positive being that once was. The mental focus and vast amounts of energy required just to keep moving has been unbelievable, with that and an almost constant grieving of a person you once knew that has seemed to be lost somewhere in a bizarre personal fog.
I made a mild mannered friend and investment with Ibuprofen and then combined with Paracetamol that has kind of carried me through the last year. But slowly this has tapered off with hardly any effect. Being a manual worker has been rather brutal, with many deep breaths and a focused mind to get through the pain, anticipating every move before it is made, as you you know what is about to come. But what can one do but soldier on, but so, so depleting. Positivity begins to wain and the joys of walking through and embracing the seasons, making and watching music slowly seem less appealing as the constant pain and immobility takes forefront of all action and movement, with the smallest tasks sometimes looking like a gaping chasm to cross.
My Gp couldn't seem to find anything wrong, so with saved funds I went to see a private consultant, full CT scan, more bloods and more bloods all showing nothing. Which is obviously marvellous, but I couldn't really walk sometimes, move my arms above shoulder height, hips just rediculous,(and I do love a very hip based latin style dance). not to mention al the random pains that seem to come and go. May be I have just got old extremely quickly then with too much physical work, exercise, dancing, hip shaking , enjoying life (outrageous)at my age!!!
PMR was mentioned but my age and sex didn't put me in the typical diagnosis set. Never heard of it?
So it was time to do some digging as answers were needed and so here I am. I promptly ordered and read the very clear and detailed book so perfectly put together by Kate Gilbert. Everything makes sense at last !!! with all of your open comments of interactive support and sharing I have an answer.
Empowered with that information and pushing GP and the consultant I am hopefully on the right track. I have a DEXA scan this afternoon (consultant requested ) then the beginning of steroid treatment.
The journey begins
Thank you to all. I am sure this will not be an easy ride but at least we have each other to connect with, shed a tear or two and laughter.
Stay as positive as you can, take care and a Merry Christmas to all
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Pumukkale
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ooh poor you. Your story sounds like many others although I don’t say that to lessen the problems but rather to reiterate you are not alone.
This site is amazing as is all the PMRGCAuk charity’s information and support (do join if you can).
Others will be along soon to welcome you and help but I’m sure they too will say 57 is not too young to get PMR.
What dose are you starting on? Do complete your profile info when you have a chance as it will help everyone.
Good luck and tell us how you feel once you’ve started the pred. (NB you possibly know but you shouldn’t have ibuprofen once you are on pred - not that it’s helped you anyway!)
Welcome!What you describe reminds me very much of what I went through before being diagnosed with GCA / LVV /PMR. Putting the fatigue, the pains in neck, shoulders, hips, tops of thighs all down to "normal aging" but NO! It takes time for unaware medical professionals to admit they need to enquire further before fobbing people off with misdiagnoses.
I wish you all the best for the next stage of your journey. The initial relief afforded by Prednisone or Prednisolone is wonderful but take things easy. It's easy to get hyped up and do too much when you're doped up on Pred!
This is the place to be. Lots of expert advice, fellow patients with their experience and stories and general goodwill (tis the season 🎄)!
I was 56 years old when overnight I started having pains in my neck, shoulders and arms, as well as groin and hips. I also had pulsatile tinnitus...it took at least 5 months for a diagnosis.
Thank you for your link and the shared article. I shall read and research the content in more depth, but on first glance very interesting with deeper holistic view point.
Please could you share this article in a new post? It would be very useful for fellow youngsters - I was 50 when I got it but it took a year to diagnose. It is a serious illness that is not taken seriously and also a life-changer, even if the PMR goes away you are never the same. At one point I was told by a rheumatologist who was supposedly and expert in PMR that I coudn't possibly have PMR because I was too young, and even if I had had it it would have gone away after 2 years. Just some of the nonsense and mistreatment I've suffered along the way. Thank goodness for Dr Mackie, a glimmer of hope that things will change
I really feel for you, having been told I had nothing to worry about. I could hardly move in the end. When I finally got diagnosed by going privately it was like magic when I was given steroids. I hope they work well for you too.
Over 50 and about a third of PMR patients are male. What else do they want other than a textbook-ish presentation in terms of symptoms? There is also another male on the forum at preset who is 49 and 2 specialists have been of the opinion it is PMR.
"My Gp couldn't seem to find anything wrong"
He needs to be sent back for retraining then - clinical skills should show him there is something wrong. Just because the labs look OK shouldn't be the cornerstone of diagnosis but that is the sad state of some doctors' abilities.
Hi and welcome to the forum, I'm one of those males. Please don't hesitate to ask questions, no one thinks any questions here are daft and there is usually someone around 24/7.
I am now 48 (male) and was diagnosed at 46, just under 2 years into my journey, saw rheumatologist earlier in the year who confirmed the diagnosis. I am currently down to 5.5mg. Any questions please ask !!
Hi, sorry you’re going through this. I’m surprised it didn’t show up on the CT scan. Hopefully the steroids will give some clues. I diagnosed myself but my rheumatologist told me I categorically didn’t have PMR because I was under 50. This went on for a few years until he finally sent me for a CT which lit up like a Christmas tree!
I’m curious what would show up on a CT scan in regards to PMR? Is it common to try to diagnose it that way? I’m in the U.S.; I’ve only heard (and experienced) them using it for GCA…
I don't have PMR but LVV but I had endless scans maybe up to 10 initially (way more now) and nothing gave an answer until I had a PET CT. Everyone was clueless but followed my various raised bloods and ordered scans accordingly. It seems so varied from person to person doesn't it. But I suspect you were as relieved as me to finally get a name to what was going on as by that time I couldn't do anything.
Welcome to the most supportive, knowledgeable, and helpful bunch of people you could find!
I’m mortified it took that long to diagnose you; all the while with you suffering in a way we all here understand! So glad you finally are under competent care. Good that they started with a baseline Dexa before putting you on prednisone. Prednisone should feel like a magic cure! You’ll have your life back. But as Dochaz wisely said; take it easy. The prednisone is masking a lot; and your body needs more rest as you handle this illness.
Hoping your journey to the other side of PMR is straighter and smoother than mine and lots of others here.
Welcome to this amazing forum. It has helped me no end since my diagnosis. I was 54 and felt like an 80year old. No more bouncing round the gym for me, I couldn’t lift my legs to get out of the car or turn over in bed, it was very frightening. Steroids were a life saver - no more pain. Steroids come with their own issues and I miss my slimmer, fitter self but I have tried to adapt, Pilates and walking are my new friends! I’m glad you are now on the right track. Good luck
Well, if the pred kicks in like a miracle, you will have your diagnosis. Whilst pred can mask other kinds of inflammation, if you have PMR the response is usually pretty immediate. A lot of us have seen a benefit within hours, though for some it has taken a little longer. I started to feel better after 2 or 3 hours and by next morning the John Wayne waddle and the toddler stomp down the stairs had gone completely.
This group is great. There's a lot of collective experience and valuable expertise amongst this crowd. I am another who has endured the umming and ahhing from doctors (mostly because my inflammatory markers have never been up), but reading the posts in here I suddenly found a group of people who were just like me, with the same symptoms, including all the random stuff that goes with it, and there is no doubt in my mind that I have PMR.
Hope you are able to enjoy a peaceful and pain free Christmas. Take it easy and don't go mad with the partying when the pred makes you feel like superman. You still have an illness, even if the pred controls the pain and inflammation, and you need to look after yourself.
Yeah, the John Wayne waddle is back atm. I've been trying to reduce my pred to the next level, but it's not going too well. It eases off when I move around, so I am really hoping that my body will adjust soon. Funnily enough, I've noticed it in other people a few times and thought, hmmm, I wonder.
Hi. Mine is a very similar story although I was 59. I started on 15mg of Pred which, within 4 hours, had the most amazing effect on my condition; I could move again, do up my shoelaces, etc. I'm not saying that you will be the same; we are all very different but if it is PMR, you should see a 70% improvement within a few days.
It then took me nearly 3 years to reduce my dose to zero using a DSNS tapering plan and the help of a very understanding GP who was happy to prescribe according to my spreadsheet.
So, don't rush it. My mantra was 'slowly, slowly, catchee monkey' which I learned from my Dad. It worked for me and I have Pred and pain free now for nearly years.
I’m so moved by your post. You write so poetically about your experience. I do hope you will be able to resume working ok, but please go slowly. I also hope you are not in too much hardship financially. I’m sure your attitude will help you enormously,
Your story resonates. I’ve gone from barely being able to move to a pain free but restricted activity. I’ve not been able to work due to the nausea, head dog & fatigue and life has turned upside down.
I’m so much better than I was in the summer, but I’ve a long way to go mentally & physically. Slow steps and taking advice on this forum has helped.
Your post so accurately describes what many of us have endured pre-diagnosis. The chronic pain, range of emotions and grief from the loss of ourselves that we once were. How you managed to continue working manual labour is unimaginable. I had just retired early at age 55 and 18 days later was struck overnight with PMR symptoms. I had just moved to a new town without a doctor, so I too suffered for 6 months prior to diagnosis but I was so fortunate not to have to struggle through physical work everyday!
This next part of your journey is (hopefully) where you have a significant response to prednisone treatment. Oh how I wish you will experience the overwhelming relief of the horrible pain you have suffered from the past year. It is in this phase hope is restored due to relief of symptoms, and you can get acquainted with your (new) self making lifestyle adjustments along the way. I still sway my hips every chance I get after 5+ years since my PMR diagnosis…so IT IS possible.
We warmly welcome you to the forum and are here for you during your healing journey. We “get it” better than most. You are not alone. Please keep us updated.
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