What is it like to live with PMR?

[PMRpro]

On one of the forums someone begged for a "paper" they could show their family to explain that, no, actually I'm not 100% better after taking my pred, whatever the books say!

I wrote this - and was surprised at the positive response. So I thought i'd put it here:

Now I've had a bit more time:

core.ac.uk/download/pdf/302...

This is a link to the a free-to-air version of a paper called ""I suddenly felt I'd aged": a qualitative study of patient experiences of polymyalgia rheumatica (PMR).

by Twohig H, Mitchell C, Mallen C, Adebajo A, Mathers N"

This link is also "free to air":

ncbi.nlm.nih.gov/pmc/articl...

"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.

One of the links here,

healthunlocked.com/pmrgcauk......

Living with a Gorilla, might convey the awfulness of living with PMR. It was written by CatieP a former member of 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%. There might still be quite a bit of pain and the fatigue rarely goes away.

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.

Now - what's it like living with PMR? Well...

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. Even 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.

[SurreyFlower]

Thank you so much for all the time you have obviously spent today to summarise these horrible conditions. Let’s hope sharing them will promote more understanding among our family, friends , medical professionals and the wider community

[PMRpro Ambassador in reply to SurreyFlower]

Can't claim it took a great deal of time today - they are all articles I compiled over a period of a few years and put into a section on another forum so knew where they were.

[SurreyFlower in reply to PMRpro]

Nevertheless please take the compliment

[Greensleeves]

Very well put . I’m having a very bad time of late , this damned PMR, which hasn’t settled at all since I caught Covid , along with a raging UTI , is too much sometimes.

I am not one for crying, but at 4am this morning my eyes were watering .

I feel selfish for writing this , but we never put our own needs first .

No sympathy, little help .

Thinking of you all suffering in silence , brave PMR warriors xx

[PMRpro Ambassador in reply to Greensleeves]

"I feel selfish for writing this , but we never put our own needs first ."

You shouldn't (feel selfish) and you should (put yourself first).

[Lone_gardener in reply to PMRpro]

Not selfish at all .... this puts into perspective how we all feel , I’ve copied the link to the family with the title , this is how I feel every day 🥴

Thankyou xx

[Greensleeves in reply to PMRpro]

Thank you PMRpro xx

[autumnlass in reply to Greensleeves]

😢 I hope better times are on their way very soon Greensleeves. 💐🌈

[Greensleeves in reply to autumnlass]

Thank you Autumn 💐 xx

[SurreyFlower in reply to Greensleeves]

I know exactly where you are coming from. Although curiously while I had COVID last Feb ‘21 my PMR was totally under control , this last week I can barely walk and have experienced the tendency to almost bursting in to tears . All the best

[Greensleeves in reply to SurreyFlower]

Take care SurreyFlower . Keep your chin up and thank you xx

[Blossom20 in reply to Greensleeves]

Please don't feel selfish . It sounds like you're having a really tough time and need some TLC. All the best to you and hope things improve soon.

[Greensleeves in reply to Blossom20]

Thank you Blossom xx

[123-go in reply to Greensleeves]

You don't need to suffer in silence and you are far from selfish. We're all in the same boat- some of us keeping afloat, others in stormy seas but we understand and sympathise. I hope you wake up one morning very soon in calmer waters and feeling heaps better. ❤️

[Greensleeves in reply to 123-go]

Thank you 123 , we are all in this together. Xx

[greengages in reply to Greensleeves]

Your not selfish at all, reading it brought tears to my eyes. I do hope your feeling better soon and that you make yourself your number one priority. All the very best to you

[Greensleeves in reply to greengages]

Thanks so much green, big hugs xx

[teesher]

I am lucky enough to be on the other side of PMR after four years and now one year off pred and no symptoms. I can say this forum was a lifeline. There really is an end to it, even if you are still on low pred. You learn to live with the gorilla and how to control him. With time, he turns into a pussy cat with a few tiny claws.

[SurreyFlower in reply to teesher]

Thank you for providing some hope 😀

[11caroline29]

Thankyou for all your comments today. Very much appreciated at this difficult time for me.

[123-go]

Many thanks, PMRpro. I could relate to a great deal in the Sheffield study.

[Mcdurmott]

Hi PMRPro —-This is invaluable information. Thanks so much for sharing it. Your well-informed responses to so many questions are appreciated more than I can say. Take care.

[jinasc]

You really are bringing back memories for me. Twohig one of the best GPs practising and also doing research with Keele and one of the nicest people I met during my time. Mackie, Kirwan, Hughes. I am astounded at how much today you have brought back to me.

You really are doing your bit and long may it last.

[Constance13]

Blimey - if I'd read that at the beginning of my pred journey I think I would have topped myself!

[PMRpro Ambassador in reply to Constance13]

That IS without pred Constance - or with too little pred.

[Constance13 in reply to PMRpro]

I did get that, of course! I went through, what I thought, were very severe PMR pains before pred but they weren't nearly as bad as yours (and many others) perhaps as I was diagnosed very quickly. It's been quite a hard slog over the last nine years but I'm getting there. PMR isn't nearly as bad as the inflammatory arthritis now.

👵🏻 xx

[Manchesterlady]

Thanks for posting PMRpro ,excellent .

[FRnina]

Brilliant piece of descriptive writing PMRpro! I didn't know whether to laugh or cry. Thanks for your so very valuable input. I'm off Pred now since January - another story there- but reading this today made me realize yet again what a huge support the forum has always been. Showing us all the way with humour, resilience and just plain kindness during a very tough illness. Immense gratitude! Keep connected everybody.

[Uglow]

Exactly this. Iv screenshot to show my family Thank you for putting so eloquently.

[welovespinach]

Thank you pmr Pro, this verbalises Pmr to a tee... Its not just one thing but a group of little niggles that like a snow ball gathers pace and enormity and only disipates when out come the sun, in our case Pred... The gorilla analogy... Now that is spot on!!!

[greengages]

Thank you PMRpro it describes PMR so well. Family really don’t understand it so this is great to show them as they don’t get the tiredness or understand the reduced mobility. They think you should be ok now your on steroids ( my youngest is a clinical lead and she just doesn’t get it at all). Loved the gorilla analogy. This forum is an emotional life saver, all the ups and downs explained and shared so generously. Often my questions are answered before I’ve asked eg thinning hair, so thank you again and to everyone else who shares their journey

[Snnib in reply to greengages]

Let's have one BIG virtual hug ladies and gents we all need it. Take care all.

[greengages in reply to Snnib]

You too

[Seekingasolution]

Thank you so much for this. The condition makes me feel I’m weaker. I used to have such strong wrists but I find it very frustrating not to be able to remove even a bottle cap these days. Plus I get repetitive stress at the drop of a hat. Using secateurs to dead head a few roses will start it off. I was using a small hammer to tap some ferns onto a napkin to make an imprint - not very hard -but my wrist was swollen until last week ( ie about 3 months to recover ). I can’t get up either without finding something to hold onto. I actually laughed with relief when I read that lady was crawling round the potting shed looking for something to use to stand up because that is so me ! I have found a technique for getting out of the bath though. I swish round like a whale and get to my knees before standing up using the bath handles. ( I gave up work as I found it hard to stand up from a table and in a sales role Ie with potential strangers I found it embarrassing and it knocked my confidence ) It’s comforting to read others experiences. I do feel I’ve aged early and can’t imagine reaching old age like my parents who lived into their 80’s and 90’s. I’m just thankful it’s no worse than it is. I have family with terminal illness. At least it’s not that.

[SusanEleven in reply to Seekingasolution]

I also feel like I’ve aged so much. I use your exact same method for getting out of the bath. I miss being able to open jars without a struggle. Just a short time at my computer makes my wrist hurt. My hand and arm get tired just from brushing my teeth!

[tangocharlie in reply to Seekingasolution]

I rarely have a bath nowadays but if I do I use the same method, swish round onto my knees then push up rather than trying to pull myself up. And phone and towel handy near the bath in case I get stuck (hasn't happened yet but just in case)!

[SheffieldJane]

Thank you so much for compiling this. One can often feel that it is only you, especially in the wee small hours. Group hug for all of us.

[tangocharlie]

Very good summary of how it feels. After 9 years I have abandoned hope that one day things will get better and am trying to find a way to live in peace with the gorilla/dragon!

[PMRpro Ambassador in reply to tangocharlie]

It does help!

[tangocharlie in reply to PMRpro]

I think it's the only option, try and keep calm and carry on. Not easy though when you are also dealing with the emotional side of being ill, like anger, frustration, envy of other people being able to lead better quality lives, dashed dreams, as well as the pain itself. I have really struggled these last few months. It's been a LONG dark winter. It should be easier to be positive now that spring is here, but also essential to do all the good useful habits like writing a gratitude diary and eliminating unhelpful thought patterns. All the best to you, you're an inspiration.

[singingloud]

I just read this article from Dr. Dasgupta. He stated PMR treatment of Steroids should only be 1-2 years and if longer other diseases should be looked into. Does he still feel PMR only last this long or that we might have switched to another disease? academic.oup.com/rheumatolo...

[PMRpro Ambassador in reply to singingloud]

I'm not Prof D so can't speak for him but it is obvious to some o us, including his patients, that he does change his mind about things quite often - doesn't always trumpet it from the rooftops though. He told us in person last summer that he often keeps patients at 2-3 mg pred indefinitely because that reduces the risk of relapses - I take that as a tacit admission that the 1-2 years story only applies to a small proportion of patients. What he calls relapses are what we generally refer to as flares - and we know that even 1mg can be enough to clear out the daily dose of inflammation, It's when you stop and allow the dripping tap of inflammation to keep on filling the bucket that you discover it is still dripping.

That article is from 2010 - much has changed about what is admitted about PMR in the last 10 years, not least due to the lobbying of a lot of patients. There are at least 3 papers giving figures showing that maybe a fifth of patients are in that short-term group and that there is a sizable number who have a rather more typical autoimmune disorder that doesn't necessarily go into remission.

[singingloud in reply to PMRpro]

My new rheumatologist must have read this article because he believes it’s over at two years and there must be something else wrong with you past that time. I have my third visit with him next week. He wanted me to be at 10mg but I will be at 11mg. He has mentioned methotrexate but I will put him off. Thanks for responding. I will try to find the papers you mentioned.

[PMRpro Ambassador in reply to singingloud]

medpagetoday.org/rheumatolo... link to the original work is at the bottom of the article

pubmed.ncbi.nlm.nih.gov/302...

There are countless links online which quote 2 to 4 years as the duration - but there are outliers in both directions, shorter and longer. It is correct that IF it takes longer another diagnosis should be ruled out but if you can't identify anything, that doesn't mean it isn't PMR. If pred works - it is NOT fibromyalgia which is another diagnosis with no definitive markers and which overlaps with PMR in terms of symptoms.

researchgate.net/publicatio...

this German study found GCs were required for more than 3 years in a quarter of patients.

[singingloud in reply to PMRpro]

Thanks I will bring up the articles.

[singingloud]

Thank you for your response. It sounds like you believe PMR will go away permanently someday. That would be wonderful! Thanks