Polymyalgia Rheumatica - and Me

Hi this is my first post but I have read many of yours and really appreciate the wealth of information that's shared through this forum. It's so incredibly helpful considering how many people I have met (and many professionals) who are unaware of PMR.

My story

I am a full time carer to my middle-aged special needs daughter who has the mental age of a 19 month-old. She also has epilepsy, dysphasia (swallowing issues) scoliosis and cerebral palsy. For years I've had severe OA in my hands for which I have cortisone injections in my thumbs. I realise this ailment, along with my OA knees (knee replacement last year) is due to wear and tear over the years but there are people far worse off than I am and obviously I love my daughter very much and just get on with looking after her.

A few months ago I started to have the most awful pains in my thighs, wrists, elbows, upper arms, shoulders and neck (I bet you're all nodding knowing where I'm going with this) and it was implied my OA had spread. To both sides of my body at once?!!

I was in absolute agony with no let-up. I was already taking 15 mg of Butrans pain patches, 60 mg Arcoxia and 8 co-codamol a day. After 2 months because of raised ESR through my (controlled type 2 Diabetes) blood test, my GP said an infection was showing in my blood and sent me for a chest X-ray. (Even writing this makes me angry.) I never heard anything back so presumed all was ok but I had requested a shoulder assessment at the physio dept. at the local NHS Treatment Centre.

I was so desperate and worn out trying to cope with this pain I felt was going to bring my life to an end. I stopped going to bed - easier to sit in a chair all night so I'd be up to see to my daughter the next morning because it was so agonising trying to get out of bed.

Many days I couldn't get dressed or wash or even brush my hair and on the days I could dress I had to make sure they were loose fitting tops because I'd had to literally cut them off me with scissors because I could barely raise my arms above my waist.

When I met the physio at the treatment centre she examined me as best she could. It was obvious I was in agony and I asked her why it was on both sides of my body but she was baffled and asked me if I'd consider having cortisone injections in my shoulders. I felt that was a bit hasty without any kind of diagnosis and wanted to explore more. She went off to see the Lead Dr to discuss my symptoms.

She was gone for ages - like half an hour and I was sitting there thinking she must have forgotten I'm still here and moved onto the next patient. Then she walked in with the Dr and he said,

"I think I know what's wrong with you and I can give you a tablet today that will take that pain away by tomorrow."

And I was so shocked I said to the physio, "Jesus has just walked into the room."

It turns out after hearing of my symptoms and seeing the raised ESR he was pretty sure I had something called Polymyalgia Rheumatica. He immediately telephoned my GP requesting a prescription for 5 mg of Predisnolone 3 times a day for me to go and collect.

AND IT WORKED!

He also explained I would probably be on that medication for the net 3 years as it would be reduced very slowly.

15 mg for 3 weeks

12.5 mg for 3 weeks

10mg 6 weeks

Then reduce by 1 mg every 4-6 weeks depending on symptoms.

The next day I was able to put my arms around my daughter's shoulders and give her a big hug. Oh the relief of returning to my old self. Even the sound of my laughter felt strange as I realised I hadn't laughed in months.

PMR had affected every area of my life and what has shocked me is how unaware professionals are of this terribly debilitating condition. If that lovely Dr hadn't been on duty that day where would I be now? I'd already seen 2 GP's, a practice nurse, an occupational therapist and scarily enough, a physiotherapist. All had looked at me sympathetically and shook their baffled heads....

I am so thankful to have my life back, to be able to laugh with my daughter and not worry that I might die during the night and she would be left here, like I did before my diagnosis and treatment. But the experience also made me realise it's time to secure my daughter's future so that she is settled, safe and secure whilst I am still here and well enough to make that happen.

So that's my story and I just wanted to share it with you. Sorry to have gone on for so long but it just poured out.

Mish xx

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45 Replies

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  • Thank you for sharing your story which many - if not most - of us can probably relate to. What an ignorant lot of professionals you had the misfortune to meet. You have given me a picture of how it would have been for me if I hadn't had a GP who was completely on the ball. I hope it all goes smoothly for you and your daughter from now on. You deserve so much better.

  • Thank you!

    I'm so glad you had a good GP.

    I'd like to get my hands on a load of leaflets on PMR and distribute them because every professional should be aware of it.

  • I'm sure there will be someone on here who can help you to do that. Have you seen Kate Gilbert's book Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. Paperback – 29 May 2016? From Amazon. It's also available for Kindle. All GPs should read it!

  • Thanks I'll check that book out.

    I did notice on pmruk they have info they could probably send me. I'll ring them tomorrow.

  • I can see that you're feeling energised now! Just don't be tempted to overdo things because you're feeling normal!

  • We have leaflets about PMR and GCA and posters about the support we offer which we can send to anyone in the UK. Email us at info@pmrgcauk.com

    We can't mail out overseas but all our literature is available from our website under downloads. pmrgca.co.uk

  • Good morning Penny, Oh that's brilliant - thank you!

  • What a wonderful story and what a wonderful person you sound. I am so glad you got a diagnosis and can hug your daughter again. Hang on in there.

  • Thanks Christine!

  • What a rocky road you have trodden Mish I too felt wonderfully better within a day of starting on prednisolone.

    I too have a daughter with a severe learning disability...not cerebral palsy, but under 5 in many ways. I don't know you managed to carry on before the prednisolone. My daughter has not lived with us for quite a few years, and I do urge you to sort out her future. Much as we both love our daughters with problems you do need to sort out her future while you can, as it will be all the more difficult for her to cope if you don't. Where do you live? I am in Purley Surrey, and would love to meet and chat if that were in any way possible? Send me a private message if you wish.

    Mary

  • Dear Mish

    Just a quick reply from me, but I'm sure you will receive many supportive responses from others on this forum.

    First, thank you for sharing your heartfelt story - I can only imagine what you have gone through in terms of the impact of PMR on your family life - and your ability to care for your daughter.

    Sadly, all that you say about the supposed 'mystery' of PMR is so often true in terms of (many..) health professionals' abilities (or not..) to recognise this 'Cinderella' condition and appropriately treat the literally crippling symptoms. I've been there and got the T-shirt, as have many here too... But your physio / GP seem to have the right take on things - keep close to them.

    On the positive side, it's not all bad news with PMR. If diagnosed and managed well, there is light at the end of the tunnel. This forum is a great source of wisdom, expertise and moral support, so make the most of it!

    Getting through, and managing the PMR journey isn't easy physiologically or psychologically, but you're in good company here.

    Try to keep smiling along the way - in my books it helps a lot.

    MB :-)

  • Hello Mark, oh I can already see the positives and yes, this site is brilliant because it's pretty clear even to a newbie like me that everybody is rooting for each other.

    This site is better than a speed dial to my GP and I look forward to hearing and sharing our stories..

  • Hi Mary,

    That's great that your daughter is settled. I've been there too.

    My daughter went on to greener pastures when she was 25 and seemed happy for a long time but the facility where she lived went downhill and she ended up painfully thin, living on vitamin medication, so badly neglected I had to bring her home. All the best plans... I would never ever have planned for her to be with me at this age.

    A coffee would have been great but I live up north.

  • How far up north? I am in Cheshire if that's any good.

  • Sorry I missed that little query. I live in Merseyside.

  • Where up north I echo? There is a local (independent) PMRGCA support group in the Manchester area

    pmrgcasupport.co.uk/

    for info about their offerings.

    The original/first English PMRGCA charity is based in the northeast

    pmr-gca-northeast.org.uk/

    and has support group meetings in Gateshead and Middlesborough as well as a set of info on their site and as a members pack when you join - their booklet (Living with PMR and GCA) and DVD (You are not alone) are available to all for a small charge, whether in the UK or abroad.

    And there is a charity in Scotland if you are that far north:

    pmrandgca.org.uk/

  • Ooh thanks for all that info. I am in Metseyside but my daughter lives in Manchester so might combine a visit with a PMR meeting.

    At the moment I am a little cautious about driving and don't unless I have to. When I'm feeling a bit stronger I look forward to getting behind the wheel again.

  • Sorry about typo - Merseyside.

  • Just a bit of info - you can edit your posts. See the little downward arrow in the right hand box? Click on it for option to edit, delete or report (though why you'd want to report your own post which you can delete is beyond me)

  • That's good to know - thank you!

    It's great to be able to add something we forgot to mention at time of posting.

  • Thank you so much for sharing. It was my step son who lives a long way away from me who diagnosed me. He's a GP. He saw me trying to walk. He knew I'd been diagnosed with Fibro. It turned out it wasn't that but PMR. I agree why do we all seem to struggle with getting a diagnosis. Especially people under 60.

    Blessings.

  • Thank you!

    My goodness you must have been so relieved for a diagnosis. I hope your medication worked straight away like mine did and that it continues to give you a fairly decent quality of life.

    Mish

  • Welcome Mish - why 1920? You aren't 96 are you? ;-)

    Yet another here who fought for a diagnosis - for 5 years. In the end I worked it out for myself but neither my usual GP or the second rheumatologist I saw (I'd seen one a few years before and she insisted it was OA, she could "feel it") agreed despite a 6 hour miracle response to pred - I could move again! A different GP in the practice DID agree and all my doctors here in Italy are convinced enough.

    Funny Judi - I know several experts who say they can tell by the walk. And I think I can too - except I rarely get the chance to find out if I'm right!!!!

  • Haha no I'm not 96 (although I felt it these past few months) I'm 63 and share my birthday with Hitler.

    5 years for a diagnosis? You must have been out of your mind with the pain - how on earth did you cope?

    I wonder if the recognised walk is a stoop? I notice on letter to my GP physio mentioned forward head posture, which I hadn't been aware of. So I would have been walking slowly and hunched up with the pain and stiffness.

    This forum certainly gives us food for thought.

  • I'd say it's a waddle...

    The pain wasn't too extreme except early mornings when I couldn't get out of bed/dress/shower but it was there all day and there were sharp stabbings due to tendonitis and synovitis which are both part of PMR. The pain was worst in hands and feet so affected everything I did. It was the stiffness that was by far the worst - I could barely toilet myself - and being unable to hold things!

    I managed by going to the gym as early in the day as possible and doing an aqua aerobics class, after which I could move and even manage Pilates and yoga, both of which helped a lot. I was self-employed so could do it - I couldn't have got to a "real" job for a 9am start. And I absolutely couldn't have done what you have had to do. Even now I struggle with any form of housework.

  • Hi Mish - A big warm welcome to you.

    Sadly your story sounded all too familiar and only read today (Dr Josh Ave website) that it takes around 5 years for an official autoimmune diagnosis in the USA with 50 million Americans living with autoimmune issues which equates to almost 1 in 6. We are an inflamed lot, not that I live in the States, but NZ.

    I too have PMR and 18+ on medication.

    Special needs is very dear to my heart having studied and trained in this field. So sorry to hear of your daughter's previous living conditions - sadly this doesn't come as a surprise to me.

    Go easy on your journey, we are all here for you and send abundant blessings to you and your daughter in the meantime.

    :)

  • Hi Megams,

    That's a lot of people suffering needlessly.

    Our NHS is still something to be proud of even though we complain about it. In many ways it's as good as private treatment, which is why I was so disappointed at the ignorance around PMR.

    How lovely that you live in NZ. A fortune teller told me years ago I was going to marry a man from New Zealand and have a very happy life out there. Oh maybe you know him? If you do could you please give him a nudge and tell him to get moving, that I am not getting any younger and my health is suffering - could it be from unrequited love?

    Having trained with people with special needs you will indeed appreciate how vulnerable they are and what a joy it is to care for them. For non verbal adults like my daughter - I am her voice and make sure all her needs are met and that she has the best of everything.

    Have a lovey day.

    Mish

  • Hi Mish - I hope this lovely man from NZ turns up soon?

    My last post had an error of which I realize not sure how to edit - should have read :- I too have PMR 18+ months.....

    My passion for "special needs'' touched me after volunteering to work school hols in a home with children "known as crippled children - not words we use now, this was 1970's.

    I completed my Dip. Spec. Ed & Bc.Soc. Sci. - really wanted to make a difference especially at policy level for those with special needs & their "Carers". Will always be a work in progress if we continue to fight the good fight. Sadly I think it can take its toll on our health in the progress.

    A landmark court case in Auckland only this week - see RADIONZ.CO.NZ re Margaret Spencer & her son Paul.

    You are doing an admirable job.

    Abundant blessings once more:)

  • Oh I've just read the case - how fantastic! Most parents are so bogged down with the job of caring they don't have the energy to deal with bureaucracy. They have to choose their battles and often it's just for basic equipment and support.

    Legal Aid is no longer available to parents to fight for their son/daughter's rights in UK and the average parent does not have the finances to deal with the Courts.

    You must be very clever to have done that course. I bet it was really interesting. Policy changes certainly are a work in progress and like Margaret Spencer, you have to keep knocking on those doors until someone answers.

    I will start reducing my steroids today and see how I get on. I still can't believe they gave me back my life. I thought it was nearly over and now after 3 weeks I feel ten years younger.

    I hope your PMR is under control and you manage to have a fairly decent quality of life.

    Take care.

    Mish

  • Thank you Mish for your kind words - my Lecturers, family & friends got me to the finish line to make capping day, I was hugely blessed & grateful for that.

    I can only imagine how difficult it is in the UK to have the needs heard for those most vulnerable - no different here either. Of course we are an aging nation in NZ which represents another problem for our frail/elderly let alone those with special needs like your dear daughter.

    I have taken a break from "life" as my body tries to heal from PMR along with the other health issues arisen since my diagnosis early 2015. Mother Nature has a way in teaching life lessons - I wasn't listening very well obviously.

    Really hope your taper goes well with special thoughts sent once more.

    Blessings :)

  • Megams: Editing: look at the bottom of the post and click on the box on the right of the 3 boxes with the downward pointing arrow. That will give you the option to edit, delete or report your post (why you'd want to report your own post I have no idea). Click on Edit, the post will come up in a version you can edit. At the end, click on Edit Response and there it is, Done! A green band at the top of the page will tell you it worked.

  • Yes it's a handy gadget to not only correct typos etc, but to add something we may have initially overlooked.

  • Yes I understand the situation ,I had similar many years ago with a different medical problem and my Mother who was dependant , Take care of yourself and you daughter ,You can't look after one without the other I tried because it was expected of me and I expected it of myself . Given the time again I would hope to see that I should have realised I mattered too . I am not moaning hopefully I am passing on experience . We try to do what we feel we must but you need to be able and that means looking into the future and seeing it clearly . I hope you continue to feel better and you and you daughter go forward and you make sure you are both cared for ! Yep The doctors don't seem to be able to show any real interest in this condition same old story for me too over 12 months with my imagination running riot before one doctor thought Oh lets try this blood test .Otherwise largely ignored Its dreadful isn't it .Shame we don't need a plaster so they could see we have a problem ;-) That might help point an arrow towards the dilemma it causes .

  • At least you can move forward knowing you did all you possibly could for your Mother although it is quite isolating when you're caring for someone. I am afraid far more carers are going to be running themselves into the ground - it's a sign of the times - with very little government support.

    Before my diagnosis and treatment I met up with some people who heard I hadn't been well and their comments about how great I looked and how they'd expected me to look awful, made me feel like a fraud. I was in absolute agony but because I don't like to complain they had no idea how worn out and unwell I really felt. So there is the added - she looks Ok to me.

  • I know I feel like a hypochondriac sometimes ,It's frustrating isnt it . I looked after my mother from the age of 10 to the age of 43 My Mother had been widowed 5 years earlier So no Dad to help and other siblings left home by then .Married had 2 kids and have grandchildren now still got husband too HAHA Heaven knows how .You muddle through . The problems are the rubbish jobs you fit around every thing and the missing stamps here and there which leave your pension on the short side . I didn't realise you could pay for the missing stamps till I had left it too late (never been up on all that stuff)and couldn't afford to and and you get tired of the people who make remarks about ''Attendance allowance ect ''I never claimed any of that It was claimed by Mother and later when I looked after My mother in Law My Father in Law claimed it . I have NO regrets I have done my best and would probably do the same again but If I can stop any one else from not knowing how to make sure they get the full pension .I f I had claimed one of these allowances or been able to I would have had the stamps paid to get the pension for the times I just did whatever I could to earn a living under the circumstances I f they feel that it is theirs then claim it and give it to them it will still enable you to have your stamps paid . PLEASE to any one reading this make sure you claim something no matter how bad the aggrieved cared for feel about you getting .It will help you later on when you have to claim your pension .This is not a whine I promise Its a rant !!!!!!!!!!!!!!!!!!

  • When I was a student my MIL (and her cleaning woman) looked down her nose at me for "signing on" during vacation - I had no other income and she wasn't providing handouts! But it meant I also had my stamps paid - so I have always signed on even when I had a member of their staff sneering at me for going after handouts (I didn't get any benefit, I was married). Now I have had Brexit Brits being rude because I get my full pension even though I live abroad - I still pay UK tax and I have paid all the NI I needed to to get a pension, just like them. But apparently it is different!

  • If you had the knowledge to do it the right way good for you if I had been better informed I would have done the same . I was very naive and have paid the price . I dont want to see any one else have to be shortchanged because they had not got the information . Yep I had to wait longer for my pension too and I still work because it isn't enough .Although part time as PMR dictates that . If you did it right it's no ones business but yours . I used to get comments from a friend who thought I was claiming allsorts in attendance allowances for what I did I never explained I just dumped the friend,(she seemed jealous that I may have had this money ) People are funny sometimes . I had enough to deal with ;-) at the time . Nope I wasn't the one who claimed it .I hope my post makes sure there are people out there who dont make the same mistakes I did ;-)

  • Oh don't talk to me about the pension. I missed claiming by 8 days when all the changes came into place 3 years ago.

    I actually received mine last week - and £40 less than my friend who has always worked. (Full time caring at home and saving the government loads of money doesn't really count as work.) I was told my pension could be subsidised with pension credit but as I continue to care for my severely disabled daughter, in pension age, it would be far more dignifying to let the Carers Allowance run on and openly give me what I have earned.

  • Oh yessssssssss I know what you mean I have had to wait for mine and I have a friend who has a long history of benefit claims who get s about 40 more than I do ,because she knew what to do and how to do it , It 's frustrating to say the least . Talk about ripped off .The amount the government has cost each and every one of us who had to wait years to get the pension we expected to get at 60 is vast ! In gains to them and in losses to us financially .If private firms had done this to their investors there would be questions asked in the ''House '' mud slung and MP s riding on white chargers using it as a Trojan Horse to further their careers .

  • Yes, it was disgraceful the way the pension change was dictated to us without any thought for those who worked hard all their lives and looked forward to retirement, only to have it snatched away.

  • Just reading through - how true that is to be told how well you are looking.

    I never go out my front door without my makeup on and dress how I've always dressed.

    Interestingly enough those who don't know my situation tell me "your looking well" - I just say thank you.

    The old adage is - "never judge a book by its cover".

  • Dear Mish

    I was so sadden to read your story & how long it took you to be diagnosed.

    I'd had shoulder surgery & was still having physio when suddenly I couldn't lift my other arm, then the shoulder/arm I'd had surgery on became worse & l remember saying to my GP it was like a mirror image of pain, he tutted & said it was probably coming from my neck!

    Luckily I still had Private Health Care at that time & he referred me to a Pain Management Consultant, who sent me for an MRI but also wondered about PMR even though I was a 'bit too young' he did blood tests & even though my CRP & ESR weren't especially high he sent me off to a Rheumatologist, by this time my legs were affected & l couldn't dress myself or dry my hair; my husband was driving me to work, setting up my clinics for the day & picking me up in the evening, why I carried on working I'll never know!

    Anyway, the Rheumatologist said the bloods weren't convincing but symptoms were so she put me on a trial of 15mg of Prednisolone & to return in two weeks, which I did like a 'New Person' so diagnosis confirmed!

    It's been up n down since then (almost 5years) I've had a couple of major flares, a year on Methotrexate as a steroid sparer as the Prednisolone was causing issues of its own, high blood pressure etc

    Last year l was diagnosed with breast cancer & the Methotrexate was stopped for surgery, while l was on Chemo I was able to reduce my Prednisolone from 11mg to 5mg as per Rheumatologist & Oncologist.

    My Consultant's were all optimistic that the Chemo could wipe the PMR out & for a while it looked that way but sadly no it's still there, actually at the moment is rearing its head again, which is hugely disappointing. So I'm sitting at 5mg & need to get a blood test, then back to the Rheumatologist to see what the plan is!

    Interestingly, when I was diagnosed with PMR friends & family just kinda shook their heads & said get well soon. When I was diagnosed with cancer, I couldn't believe the flowers, cards, gifts & messages l received.

    PMR is a very misunderstood or unknown disease to most people.

    I hope you make a steady improvement but don't overdo it when you feel well, slow n steady is the best way. It must have been so frustrating & worrying for you when you couldn't even cuddle your daughter.

    You'll find a lot a support on this forum & as one of the other ladies said Kate Gilbert's book is excellent.

    My Best Wishes to You & Your Daughter xx

  • Oh my goodness you've been through the mill! Your cancer treatment must have been a huge bump in the road when coping with PMR was bad enough. I'm sorry you've had so much to deal with.

    Maybe the Consultant will increase your Predisolone and you will find some relief?

    I am all for reducing medication but it's all about quality of life and I won't hesitate to to go back to my GP if that pain returns.

    I will try not to overdo it but before this I was a very active person and am very involved with the world of Learning Disability. I feel like I've been reborn sitting back at my desk and being able to type on my computer. (But writing on iPad at the mo). So thank you and everyone who reminds me to take it easy.

    Have a nice day!

    Mish

  • Several things struck chords with me here. I am married to a kiwi. He's lived here for 50+ years. I have a special needs grandson, severely autistic with no speech, aged 13. And another grandson with moderate learning difficulties. He was born prem so that is probably what caused his problems. And I so agree about the understanding and sympathy of friends and relatives about our PMR. We all look well with our round faces and high coloured cheeks -- that as my dear mum(RIP) said -- 'our looks don't pity us'. We look better than we feel. I am now on week two of Leflunomide and things have eased off a bit but my butt cheeks and thighs are pretty sore. Just back from my stretch and flex half hour at the gym, which I try to go to once a week -- after the lovely rheumy suggested I do go back and do something to ease off the stiffness. But as others have said it is a fine line between doing things and paying a hefty price afterwards. Best wishes. Judi

  • Hi Judi - 'Our looks don't pity us.' That's so spot on! Sometimes when I have my daughter with me in her wheelchair I feel stereotyped as if I'm just a carer and what do I expect!? That things like this are going to happen so suck it up.. But who knows what brought my PMR on?

    But if they are right, much more money needs to be invested by this government to support carers at home because the cost not only when carers get worn out and become ill - and residential care has to be provided for those we can no longer look after, will be astronomical.

    Your grandchildren are lucky to have you.

    Take care.

    Mish

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