Hello PMR Forum I am new here.: I have PMR. I wish... - PMRGCAuk

PMRGCAuk

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Hello PMR Forum I am new here.

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I have PMR. I wish I had never heard of it, but once it gets you, you will never be the same again. My doctor had no idea what was causing my pain and for months I was on Ibuprofen 800 mgs three times a day just to make it through my day. Then a friend offered me something called Pregnolenone which she bought from the health food store and within four hours of taking it my pain had gone from a 10 to a 6. She told me to go back to my doctor and explain that I might need a steroid for my pain. Back I go and he takes more of an interest in me and does a bunch of blood tests, which all come back normal except for my sediment rate which was off the charts, and sends me to see a Rhumy. He put me on 15mgs of prednisone and the pain was gone within 24 hours. I started Googling PMR to try to understand it more, and came across this site. THANK YOU for helping me come to grips with this horrible malady, and God Bless you all. The photo I included is of my daughter Emma who represented the USA at Crufts in the International Junior Showmanship Competition where she placed 2nd in the World...She showed a Silky who she had only met five mins before she went into the ring...So I was so proud of her.... We were a show dog family, and I have shown and raised Champion Yorkshire Terriers in the AKC for over 25 years.

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PMRpro
PMRproAmbassador

"but once it gets you, you will never be the same again"

I think it is a bit premature to be saying that and I could introduce you to a few people who would disagree! A Precious Princess has had PMR for about 7 years, got off pred briefly and it came back, is still on pred and over 70, but has just taken up sailing and crews for her husband. Skinnyjonny is about to climb one of the Himalayan peaks (Annapurna IV) and he was in a wheelchair after being a firefighter (and climbing similar peaks as well as doing marathons)

healthunlocked.com/pmrgcauk...

In a year you will look back and see how far you have come. Think positive - and see where you get to.

Tonch
Tonch in reply to PMRpro

Most people said I should stop racing and I thought my life as a runner was over too and got really low, but now I can run as fast and even faster than before PMR. I ran a personal best of 20:27 at 5k and beat many guys half my age and won my age category. I think losing weight due to PMR and energy from Pred (10mg then) helped? Now on 5mg.

Yellowbluebell
YellowbluebellAmbassador in reply to Tonch

I would still be of the opinion that the fact you were taking pred could enhance your running. Even if you feel there is no reason to inform your club of your medication surely respect for your fellow runners would be a better move.

Blearyeyed
Blearyeyed in reply to Tonch

Actually most people gave you the advice that you may find the added problems you were having were because you might be doing too much , and that the majority of PMR sufferers found that Cardio activity , like running was too hard and a trigger for Flares at the beginning of the PMR journey. Pacing yourself is vital especially at the beginning of this illness and you should feel very fortunate that you are one of the rarer people who has been able to resume intense sporting activity so quickly.

This is not the Norm , even for the young and regular sportspeople with these conditions.

Advice was given to you based on the difficulties you were experiencing at the time which , on the whole , is appropriate for the majority of sufferers of PMR/ GCA.

But , as this is a post , written by another member , new to PMR asking for support and advice , as you did, to help them come to terms with their new condition , it may be better, and more helpful , to both ukusa and You , not to fill up this post with replies on this and write a post of your own to continue a discussion about things that are specific to you and your needs.

Healthy Words make Happier Forums x

DorsetLady
DorsetLadyPMRGCAuk volunteer

“This horrible malady” -

true it’s not nice, and can be life changing (been there, done it, got the T shirt) but it’s not life threatening like cancer or coronary problems.

You are in shock at the moment, but you will get through it - and as PMRpro says, given time you will look back and realise it’s not that bad!

PMR without prednisolone is indeed a horrible malady. I was almost suicidal for a while and felt that my longed-for retirement was now wrecked as I was house-bound and in constant pain.

However, PMR with slow steroid tapering (and all the advice from this wonderful forum) has given me back almost all my previous level of activity, together with several new strategies for successful and much healthier living. I have lost weight, put my type-2 diabetes into remission, improved my skin-tone and hair with a healthier diet, continued with an active life of gardening, amateur dramatics, volunteer work, etc. So, in some ways I thank PMR for being my "wake-up call" and, at 71 years of age, actually feel about 55 again !!

Yellowbluebell
YellowbluebellAmbassador in reply to Cross-stitcher

Pred is definitely the good guy in my life and not the evil pill a lot of people think. Good luck with feeling 55 again.

Agree!👏🏽👏🏽

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Cross-stitcher

If you read my profile and some of my posts you’ll see I was undiagnosed for 18months in extreme pain - and lost the sight in one eye before I started Pred. So I am well aware of what a “horrible malady” untreated GCA can be.

However, as you rightly say once on Pred your life is turned around - and usually for the better despite some of the not so nice side effects. Unfortunately at he beginning of the journey it takes some time to be aware of that.

kulina
kulina in reply to DorsetLady

How did you survive the pain for 18 months? I can't imagine being in pain for that long. I remember my husband pulling me out of bed in the mornings to excruciating pain and stiffness. How did you ever do it?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to kulina

To be honest looking back I don’t really know -

painkillers (had to keep a diary to make sure I didn’t taken too many in any 24hours period),

occasional steroid injections for supposedly frozen shoulder did help temporarily,

being told, every time I saw the doctor - you’ll wake up one morning and the pain will be gone! yeah right!

the thought I had to carry on as my husband was ill,

a lot of tears, and

a pig headed thought that this will not beat me!

However, it’s not 18 months I would want to repeat, nor wish on my worst enemy!

What great pictures, thank you for sharing. PMR does change you, at least I have found it so. And you know that is not always a bad thing. I think I've learned a lot of lessons which I should have learned much younger (I'm now 72, PMR since about 2014, possibly earlier, diagnosed and treated 2015).

So glad you decided to introduce yourself to us properly and I love that little dog .

You seem to have " bred" a wonderful daughter too , whom , I'm sure , will be the sort of girl who will help Mummy get the most out of life with PMR along the way.

I read you post and can see you are still in shock after being diagnosed which is something that happens to us all.

However , now you are here , you will be able to read lots of posts , not only to help you get used to what the illness is all about and how to cope with it , but also by lots of forum members whom certainly prove that there is life living with the ' New Normal ' and that things won't be like that forever.

Give yourself time to relax , rest , get used to your new medication and diagnosis and accept that you have it and might need to make a few changes first.

Tell all your family and friends , as having an ' invisible illness' sometimes makes it hard for them to understand if you need to make some changes in what you do or cancel things from time to time , and ask if they can give you all their love , support and a bit of help with the physical stuff while you are going through it.

Then pace yourself , adapt your activities to include more rests and if you have a terrible day of pain after physical activity or a big Day out know you may still need to scale back a little further.

It takes time but you get there once your treatment plan is properly sorted out at a level that works for you.

If you haven't any other health issues , many people get on very smoothly as long as they create a new balance in their lives between activity and rest , and in some ways that becomes a silver lining in the long run as it teaches you a way to relax and enjoy a quality of life that comes without the frenzy .

Serenity and learning to be calm , patient and reducing the stress around you is key , as stress brings pain .

Believe it or not , the skills you learn to cope with a Chronic Illness last for life and will make you a stronger , calmer and even more beautiful person well after the journey with PMR has come to end.

Most importantly, PMR is not like a puppy , it won't have gone by Christmas but it is not for life .

Keep dropping in with your questions , for a rant when you need a shoulder to cry on , and with your good news and achievements too ( as these are the best stories to read and give hope to us all along the way ) and all your new Faraway Friends on the forum will help you through it.

Take care , Bee x

Hidden
Hidden in reply to Blearyeyed

Thank you so much, Bee. I truly appreciate what you said. I am so glad I found this site. It is such a great place to come and know I am not alone. xxx Georgina.xxx

kulina
kulina in reply to Blearyeyed

Very well put!

Enjoyed the pics.

Famous last words: after GCA I thought thank goodness all that was over. Not. Now I have PMR, pain all gone but hopefully found my prednisone maitenance 'level' and - fingers crossed - it too will buzz off in time.

All the best.

Lovely photos. Don't think you won't get your life back. You will but maybe with a few adjustments. Prednislone gives you your life back and this forum will get you through it all. Great people with expert advice and support.

I am 91 and not given up ! I don't expect to do what I could do 10 years ago, but that is because of age not PMR. I am down to 4mg, last 5 days, and plan to do volunteer work this morning at the Nature Centre and then exercise for an hour at the local gym in the afternoon. Set a small goal for yourself and think in a positive manner whether you achieve it to-day or not. :)

hi, welcome to this site which is a god send to many people. the advice and caring is second to none, your pictures are lovely, hope things go well for you. yes pred isn't a nice drug to take but it is worth it to get relief from the horrible pain pmr brings x

Rest assured I have checked this and unless I am running at national or international level (I wish!) I do not need to apply for a TUE unless tested and then I should apply retrospectively and would be issued with one according to my GP who is also a runner. The pb was at parkrun anyhow so not under WADA. NB the wonderful Pred has also removed several % from my muscle mass and increased my fat % by a similar amount, although without it I would undoubtedly be as stiff as a board.

You asked me about running and Pred - it was and is relevant. If you don’t want to discuss why did you reply on the subject. It was a real challenge for me so it is important to let others know that you can exercise with PMR. Why do you have a problem with this?

Hidden
Hidden in reply to Tonch

I have deleted my questions because I know it is a pointless discussion. I will never understand using pred as a performance enhancer and you will never get why I think your messages are insensitive and lack empathy. So it's better for me I ignore your messages. Have a happy life.

Yellowbluebell
YellowbluebellAmbassador in reply to Tonch

As far as i am aware no one on the forum suggested you give up exercising completely. What was suggested to you was that you considered the majority of people on the forum who were not able to do even light exercise let alone the amount of running you do.

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