Hello everyone. I wonder if anyone could help me ? I need to find a paper to give to my lovely family so they can read exactly what it is like to have pmr . not what the text book tells you it should be like ( which most of us have found is total rubbish ) I have a copy of Kate's brilliant book but I feel I need a condense paper explaining the awful symptoms and feelings that this illness causes.
As you will see from my jumbled request that I'm not very good at describing ( I used to be but pmr brain fog has taken over ) I know that there are very intelligent people on this site that could maybe understand what I'm seeking and point me in the right direction or even write a paper on how it is ( does this make sense ? ) I don't want to give my loved ones Kate's book to read I fear their eyes will glaze over although my lovely husband has read it twice. I would just like to have a detailed description of how PMR can make you feel , I know everyone is different but generally we all feel the awful aches, stiffness and pain and how we all have to pace ourselves ( even our own John Wayne and his trusty donkey ) .
I do so hope this makes sense I have a lovely lovely family but I sometimes feel they don't quite understand and I feel awkward and self conscious trying to explain what it's like "But mum when I read up on it they say the pain wears off by midday does that not happen with you ? " NOooooooo it doesn't 😬😬😬😬😱😱
I'll stop now I've driven you all crazy and just hope you have understood my plight
Thank you all for being here and here's a glass of wine for you all 🍷🍸just to clear your heads for your mission
My heartfelt thanks E x💐
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Emilytom52
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They have a booklet "Living with PMR and GCA" as well as a DVD called "You are not alone" - which was designed to explain to family and friends what it is doing to us. That may help.
If your pain is taking a long time to wear off try taking the pred very early and settle down for another couple of hours sleep. Are you on "ordinary" white pred or enteric coated pills - as that also makes a difference?
Wow !! Speedy ( bet you haven't been called that in a long time a ? ) me neither ! Thank you so much for your help. I'll do that. I have the ordinary White preds but seeing GP soon and will ask for slow release. Ex💐
I happened to be emptying my email notifications when your post popped up!
No - there is no "slow release" as such and if it is taking you a long time to get going in the morning then they probably won't help!
Taking plain white earlier probably will - don't let the new inflammation get entrenched - or possibly even splitting the dose to take about 1/3 at night and the rest in the morning. Lots of people do and some US doctors suggest trying it. One lady who found the side effects unacceptable (wobbly legs a couple of hours after taking the tablets) took all her pred at night at the suggestion of her GP - it didn't affect her sleep and the wobbles must have happened when she was asleep!
A study showed that the optimum time to take white pred is at 2am - it is absorbed and reaches the peak level in the blood about 2 hours later, just before the inflammatory substances are shed in the body so they never get to work. Result - far less morning stiffness and no waiting. I do actually know people who set their alarm to do that!
Tell us more about yourself, your PMR and your problems - then maybe some of us can make suggestions.
I will write a short history when I've stopped grizzling from your kindness. Having said that, a good ole cry works wonders sometimes. My husband David will read your suggested scientific papers with me ( he trained as a biochemist ) so understands a lot more about the chemical side of things than I do. ( I'm still re-naming you speedy ) xx. Ex💐
Mine nearly died 22 years ago - June 6th was the anniversary of him being told he had a massive tumour in his chest (size of a rugby ball and doubling in size every 10 days, never seen before, the type is usually testicular cancer). He had a witch of an oncologist - thank goodness!
My goodness, that must have been utterly terrifying. Wonderful that you found the right oncologist. You must feel that every day since then is a bonus.
We also had a good oncologist, it was just too far advanced and had spread too far when diagnosed.
PMRpro, I was reading your reply and wondered how we know that 4am is when the inflammation is at its worst? I guess by testing people, having their markers checked? Made me curious. It's interesting too because I was getting a GCA headache at exactly that time, 4 am, so started splitting my Pred to 15 and 5 and no more headache....which brings us to the debate about all in the morning or splitting. Most of what I've read says no advantage to splitting - ?
Because at some point they will have done the blood tests to identify them - I imagine it's fairly basic physiological/biochemical stuff. It is a widely accepted and quoted item. I think a lot of the work will have been done in RA. looking for the causes of their morning stiffness.
I didn't say that was when the inflammation was worst - it's when they are shed, they too take time to have their effect and that is probably different for different people and in many PMR patients the stiffness last all day or is worst for them at different times.
I do know - and have heard other people saying the same - I have got up to go to the loo in the night at 3 or 4am and been fine, no stiffness at all. If I got up later, say 5am, I had the usual "got to unfold myself" feeling and my balance was rubbish.
This is a link to the abstract of a paper called ""I suddenly felt I'd aged": a qualitative study of patient experiences of polymyalgia rheumatica (PMR).
Twohig H, Mitchell C, Mallen C, Adebajo A, Mathers N"
Unfortunately, I don't think it is available "free to air" but your local library may be able to order it for you. If you have a University library close to you they may be able to help if the ordinary library can't - I was a member of Newcastle Uni library when I lived in Durham. It is patients talking about PMR.
"An impediment to living life": why and how should we measure stiffness in polymyalgia rheumatica?
Mackie SL, Hughes R, Walsh M, Day J, Newton M, Pease C, Kirwan J, Morris M
and although some of it is quite complicated science stuff, the Results section has a lot of quotes from patients talking about their pain and stiffness and can be easily understood by anyone - it is also patients talking about their experience.
This is a link to a section on a different forum which is a distillation of posts people said they wanted "kept handy" - there are 20-odd themes and there may be some in there that does what you want, I wrote/compiled them a long time ago and can't really remember what's in what. The 9th one, Living with a Gorilla, might convey the awfulness of living with PMR. It was written by polkadotcom on this forum.
Explain to your family that a GOOD response to pred in PMR is felt to be a 70% global improvement in symptoms - that is overall, a general effect, not that each symptom improves by 70%.
Also, that pred takes some time to work - and that every morning a new batch of the inflammatory substances is shed in the body at about 4.30am, which within an hour or so leaves you in a similar state to before pred and which then takes some time to respond. Everyone is different and some people will be pretty much OK a couple of hours after taking their tablets, others may take much longer. Some things are not always directly PMR itself, but are often found alongside it and although they respond to oral pred eventually, it may take months to get a real improvement - such as with bursitis or tendonitis and myofascial pain syndrome.
What's it like? On a bad day, and we all have them however well managed we are with pred, it feels like being wrapped in tight bandages like an Egyptian mummy or that we have a concrete overcoat on. Our brain feels like cottonwool and you read a paragraph, even in a chic-lit, 5 times - and STILL couldn't tell someone what it said.
On a bad day you can't do up your buttons or fasten your bra alone. You go to the loo and sit there (providing you didn't fall over in doing so) wondering how you can make your arms long enough to reach to wipe your bum - those arms that weren't long enough to be able to get your socks on this morning either. Your skin feels tender - as if you have flu - so even a shower hurts and then you have to get dry. Your hands won't do what you want them to and you can't get them up far enough to blow-dry your hair - which has turned into straw anyway so does it really matter?
You feel bloated because of pred fluid retention - and anyway you've put on weight. If you haven't developed hamster cheeks you still have roses and fewer wrinkles that make people say how well you're looking - when all you really want to do is die in a corner. You've gained enough weight for nothing to fit comfortably but when you struggle to Next all you are fit for is to lie on the floor under one of the clothes carousels and go to sleep. You crave sleep - but when you go to bed at night you can't GET to sleep. Because of pred. Then you get to sleep and go to turn over in bed - and the pain and "loggness" of your legs wakes you up and you lie there for what feels like hours (and often is) desperately hoping you can get back to sleep. And then the alarm goes - but you are even more tired than when you went to bed last night so it can't possibly be time to get up. Even if you could move enough to get out of bed and start the whole darn process of dressing again. It's enough to make you feel like going to bed in your clothes.
That second article is really interesting in the lengthy discussion about relevance of "morning stiffness". When in my early days of PMR I first heard it was a key symptom used to help in diagnosis I thought it passing strange as I think I've had "morning stiffness" as long as I can remember! It was fascinating to read that the subjects of the study did not even mention this issue; for them *of course* stiffness was related to how their everyday actions were impeded, no matter the time of day. Is it true that rheumatologists generally use this alleged symptom as a key component in their diagnosis and treatment of patients?
It's good to see this disease getting attention, thank you for sharing the article.
I think this group has registered that it isn't JUST morning stiffness - it's all day stiffness. We have told them enough times! They also get that when patients describe their problems pain and stiffness are confused. How could they fail - I'm one of their patient research partners! And one of the other PRPs is as able to tell them as I am!
I understand that the writers of the article understood this, just wondered if the morning stiffness is what most doctors still use. It's certainly prominent in a lot of the internet descriptions. While we're at it - do "normal" (non-PMR) people also shed cytokines in the wee small hours, and if so, why are they well and we aren't? Different kind of cytokines? And I suppose no one knows why....?
Don't think so. they are there in RA - and yes, there are various cytokines, lots of them. Inflammatory substances due to the autoimmune disorder - lots of them, all different sorts.
Goodness you've just described my life with pmr to a tee! For a "well" person I suppose it's hard to believe the whole scenario but for "us" living with it it's a perfectly composed description. Thank you pmrpro.. 😘 I'm going to share this with my family who I'm sure think I'm a hypochondriac by now. Love the concrete coat description - absolutely perfect !
I also have lower back problems,which doesn’t help..I am immune to all pain medications, so I can’t say where the pain is coming from. I even had an implant inserted in my back. I myself don’t know where to turn. Wish I could also find someone to perform a miracle. Good luck to you.
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Bad nights and that book!
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