No point to this post really. I was awake for hours and hours in the night and I felt quite isolated. I’ve got the dentist too this morning which never puts me in a great mood 😆.
Anyway, I was looking back over my Medical record and I was diagnosed with a frozen shoulder which I’m absolutely sure was the start of my PMR. It also happened to be, almost to the day, my 50th birthday. So that lead to an 18 month dance with my Rheumatologist because “I categorically didn’t have PMR because I was too young”. I had two NHS consultants tell me this. In that 18 months, I became so ill I could barely get out of bed so consequently, I’ve lost so much muscle. I’m just having a moan 🤔🤭.
I’m reading a brilliant book called The Way Out by Alan Gordon. It’s really interesting. It’s about healing chronic pain but it’s very scientific. They’ve had amazing results. I’m hopeful! Quite frankly, if someone told me that by standing on my head whilst sucking by thumb, would cure me, I’d probably do it! 😆😆😆. X
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I was awake too. Got my daughter and her two sons here. She is stressed because her father in law is dying . His children are with him, her mother in law wants just them. Understandable but it’s not helping my daughter’s stress levels. They had to return from Bali to the U.K. because he took a turn for the worse. They were returning to Australia after visiting us all. I have taken 2.5 mgs extra and am eating like a horse. Calm, calm,calm.
A number of people have mentioned a frozen shoulder near their PMR diagnosis. The same awful sick ache. I am braver at the dentist these days, we’ve been through so much, “ bring it on”!
oh my golly gosh ! I’m sure I would not have still been here if I did not eventually accept steroids . Pain and movement was intense . I started with writers cramp/ untold new names for that ! But in hindsight I so now accept that it was also a major undiagnosed shoulder problem , which I have been suffering majorly , again , for the last three days. I learn something new every day ! Maybe there is a connection . ps PMR popped up years later after I started doing physical work .
I had a couple of those nights too last week - suddenly couldn't get to sleep whatever I tried. Mind you - doesn't help when it is still 28C at 11pm! However - last 2 nights it was OK - same temperature ...
That is low ! Just checked ours again , 88%. I have never perspired in winter before. Ok if I do nothing physical. I bet it is contributing to my moaning bones.
Wasn't that low yesterday - about 60% I think but we had a humdinger of a thunderstorm in the afternoon with almost 100 km/h winds. Did a very good job of washing my balcony window blind - which in its turn did a brilliant job of protecting the contents of the balcony!!!!
Brilliant - weather worked well for once ! I spent time looking for a warm , dry , low humidity holiday spot . I would love to spend a couple of weeks doing nothing, in a different climate , just to see if it helps my moaning bones .
Ah the old familiar insomnia, I feel for you. Our stories are similar, I started with a frozen shoulder which somehow morphed into PMR, I was 50. Took early a year to get diagnosed. My GP had no idea about the steroid dosing and I was reduced too soon and too fast, leaving me crippled for 3 years and a daily struggle to work. I then had a succession of rheumatologists telling me I couldn't possibly have PMR because I was too young and even if it had been PMR it would have magically gone after 2 years. Luckily around then I discovered this forum that saved my life. I never gave up trying to get help even though I was being told I had fibromyalgia and eventually 5 years later a PET_CT scan proved it was PMR all along. Those of us who get it young seem to be a special case unfortunately. Meanwhile I have pretty much given up all faith in the so called medical experts, in whatever field. It's up to us as patients to ask the right questions and not be fobbed off.
I could’ve written this! Mine was complicated because I also have Ankylosing Spondylitis so it was assumed that the PMR was AS. Like you, three years down the line, I had a pet/Ct scan and PMR lit up like a Christmas Tree’ x
I recall you've mentioned that, that's awful, not even the injection form of steroids? There must be something they can do, have you tried any DMARDs? I went nearly a year without a diagnosis and steroids and could barely move.
I can tolerate injectable steroids but they won’t give them to me for PMR. I know, right 🤷♀️. Tried methotrexate and it was awful. I’ve managed to convince the rheumatologist to put me back on Humira for my AS for six months. I guess that night help my AS a bit. Other than that, I don’t know.
Hi there, anything resembling a reason why they won't inject? It just strikes me as so - well, obvious, can't tolerate oral but can a needle, oh that's fine then, we'll inject...Maybe I'm missing some complex medical detail - or maybe not.
Otherwise just support and hugs. i've been on the isolated and wakeful trip, though for other reasons, not PMR.
I had to demand them. I'd put in a complaint, there is no reason you can't have them under the guidelines. If they want further info/evidense have a look at some of my old posts about my experience with links to various research.
Why can't you take them if you know they work? I hate to say this but by the time I was diagnosed I felt paralyzed and like someone was gutting me alive. So much pain I couldn't scream.
I don't mean to pry but hard to give advice when we don't have a full picture. You say prednisone works but why can't you take it? Many people get housebound when in such pain.
We hate to see anyone in pain and are here to help but need answers in order to give proper advice.
Why isn’t it used more for diagnostic purposes for PMR (especially given that there is no one specific test to confirm diagnosis)? It would save months/years of suffering for PMR patients. Is it cost related?
Certainly there are people who suffer due to misdiagnosis or lack of one altogether. Especially the younger folks or those who do not have raised inflammatory markers.
because in the NHS these scanners are used mainly for cancer patients. If they were full of PMR etc patients, the cancer patients wouldn’t get a look in. Also, you are injected with radioactive stuff which they will only usually use if cancer is suspected or being treated otherwise its like throwing a mountain at a molehill
It very much depends what the radioactive stuff is - in PET-CT it is only a very low dose of labelled glucose which is unlikely to have ANY side effects.
It is a very expensive scan and there aren't enough devices (which cost north of a couple of million even at entry level) so waiting lists are long since they are used widely for cancer diagnosis which always comes first.
You have freaked me out. 17 months ago I was told I had PMR after having a frozen shoulder Slowly I tapered down to about 20mil of steroid from starting on 36 till December last year. In January this year my condition had actually got worse. In February this year saw specialist who checked me from head to toe & said I did not have PMR & it was fibromyalgia & that I should never have been put on steroids. She told me to tapper down as quick as I could I am now on 5 mil & she said she will slowly get me down to zero . It's been a very painful year and I'm taking morphine patches & pagablin to help me with a added problem of a left leg that not working & causing extreme pain . Also suffering with very swollen feet & ankles . None of this crap makes any sense
Your last sentence -we should all do our own research , now we can . My Dr and Chemist had no real knowledge , but fortunately my Chiropractor had previous experience , guided the other two along and I was put on steroids! They worked ! There r doctors who’s hair will stand on end if you have researched Dr Google , and others who are willing to listen and learn . I have forgotten exactly how few hours study our Doctors have done on PMR in their 5 year education . It is better to research and find a doctor who has interest and some knowledge in the problem . Better to take printouts from this site from those with experience on PMR.
PET/CT scans do and can show PMR but they are not routinely used in the UK to diagnose PMR. I only got one because I also have Ankylosing Spondylitis which was complicating things. I also started with PMR when I was 50 so my Dr didn’t think I had it as he thought I was too young. PET/CT scan are left mainly for the use of cancer patients. My PMR lit up like a Christmas tree on the PET/CT therefore confirming diagnosis. X
Why don’t you join the private PMR GCA Gardening group? The lovely photos really cheer me up. Also you could have a go, even if it is just trying to grow a seed or two in a flowerpot on the window sill. facebook.com/groups/6288051...
If you don't have your own garden, is there a public one nearby that you can enjoy? You would have something to share then. I find doing flower photography on a nice day takes my mind off my ouchies and wobblies for a bit.
what a good first read this morning! Can I have a moan too please?!? Woke twice in the night with headache on top of my head!!! Never happened at night before.throbbing feet not so bad. Had to take zapain !am in the south of France in a heatwave!! 40 expected today! Am still on 4mgs.
When I have even 5 minutes swim.. my knees really ache afterwards.. even just walk in the water .. knees still hurt afterwards. Just not good enough. Am only 85!!! Not nearly 100 like 2 friends of mine!!! Never compare Merelina! Question your expectations! Onwards!!!
Am here with daughter and great grandaughter.
Magical place ! Surrounded by trees and so quiet. How lucky am I ? Moan over! Fir the moment anyway.
What a shame that swimming is too uncomfortable for you. Is it the temperature of the water? I think I must be very lucky. Swimming is the one thing that I have been able to do throughout, as long as I don't overdo it. I feel normal when I am in the water. That's once I have got over the exhaustion and lethargy enough to leave the house, which is my biggest obstacle to exercise. I went for a swim last night and I have built back up to being able to manage a kilometre again over the last few weeks. I was expecting to be stiff and sore today, but this is the most pain free I have been on waking for weeks. I think this might have been one of the things that helped me get by before I was given pred.
Though chats like this one, does make me doubt my PMR diagnosis. I don't think that I was anywhere near in the same level of pain as a lot of people in this group.
btw, your comment about the knees reminded me that I do have to be careful when I do breast stroke not to kick to hard as that will stir up my knees too. I alternate 2 lengths crawl and 2 lengths breast stroke.
water is lukewarm.( Temp this evening 40!!) My legs feel as if I’m trying to move lead weights about!. Have literally swum very gently for 5 minutes .. or walked with little running steps or floated!!!
Managed the fabulous market this morning and bought a top a skirt and some sandals! Wow! Great grandaughter remains a positive delight.. but not enough energy to be in charge of her at all. Except on sofa reading! Rather dreading the night as I had this acute headache on top of my head which woke me up twice! Had to take painkillers. Was it position of neck on pillow? Who knows?
Night all! Onwards.. for a bit anyway.. at 85?!?!?!
I am 65 next month and I reckon I have had PMR since early 40s. Though I was only diagnosed in Nov 22. One of the GPs (who is also a rheumatologist) also told me that I categorically couldn't have had it then as I was too young. My response was that if I didn't have it then, then I don't have it now. I got the old fashioned look to that. My body and I know how it feels. I think that some of these docs need to go back to school.
I totally get the isolation thing. My tiredness and just generally feeling so unwell has made it very difficult for me to socialise. It has sapped all my passion and enthusiasm and interest. I try to push though it, but it is hard work at times. This is the aspect of this crappy disease that I am struggling most with. And it is difficult for muggles to appreciate how unwell you feel when you look OK. Until you try to move.
Before I started on pred, I would go through phases of the pain in my knees waking me every night after about 3 or 4 hours sleep. All night long trying to get a comfortable position, moving a spare pillow around the bed, pillow between the knees, pillow under the thighs, pillow to the side. Nothing worked.
I know how you feel. Due to converting horrendous that happened to my family a few years ago, all my “friends “ disappeared so it’s just my son and I now. X
Others have chimed in about their experience/struggles with diagnosis and isolation. You are in good company on this forum because we “get it”. The amount of unnecessary suffering due to uninformed physicians, misdiagnosis, and lack of access to the proper testing (pet scan), is disheartening.
I really do feel for you given you can’t take steroids. Can’t even imagine how you manage, but as in Tango Charlie’s case, perhaps you need to insist on trying injections for some relief.
Our symptoms can limit us in many ways, including social connection with others (sometimes due to pain/fatigue, and sometimes due to mood from steroids or long term chronic pain). Add to this the response of others to our illness, and we can definitely become/feel isolated. Just one more ripple effect of having a chronic illness.
Finding this forum, and creating a monthly Zoom PMR/GCA support group was a game changer for me! Both have helped me navigate this condition in ways medical professionals, family and friends could not. And I do get so much energy and strength from connecting with others.
Hoping you get some rest and relief sooner than later.
Hi Bramble You mirror my life I started with a frozen shoulder Had the chat with Rheumy who said I couldn't possibly have it I was far to young and it doesnt show in my blood work I also was 50 I was given the diagnosis of Fibromyagia and tried getting on with life Difficult with the pain but I beasted on Early this year I insisted on last appointment with Rheumy and saw someone different We locked horns He insisted that I didnt have it I reiterated the same story that my sister was in PMR remission for 7 years She also had unremarkable blood work and she was only in her very early 50s Had her doctor not tried her on Pred she would have been diagnosed as Fibro and may still be in pain He relented and and sent me for a Pet scan Lo and behold I have it x All the best sweet heart I hope you sleep well tonight x
Keep battling Bramble2000 and hopefully something will work for you eventually. The private rheumatologist I saw mentioned PET scan but said I would need to be off steroids for 4-6 weeks first, not that it is an option at the moment but I look forward to a day when I can say to the NHS GP/rheumatologist's - I told you so !
Had to laugh Bramble2000 as I could so relate to your post. Sadly not about your youngish age...I wish.But was awake half the night, nothing new there, but I also had a frozen shoulder, started 2 years ago, honestly didn't think my life could be more miserable then along came p.m.r.
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Hello, PMR newcomer here.
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