I think I'm on to something. Time to give back. C... - PMRGCAuk

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I think I'm on to something. Time to give back. Can you all help?

Singr
Singr
87 Replies

Time to give back. Can you help me?

This forum has been of great support to me in the 2 years since diagnosis. I've been through a lot as many of you have and last year was the worst. I'm down from 50mg to 7 mg. The journey has been full of ups and downs which I'm sure you can all relate to. No one should underestimate the life changing impact of these conditions. I've lost my house, my job and ended up back living at my mums and some horrific encounters with the DWP and Health Services which have left me devastated at times and wondering if it was worth while carrying on at all. . I'm doing a Masters Degree in Voice. This condition - while I wished I never had it has given me a new direction in life. I'm a singing teacher and professional singer. PMR, GCA and fybro have been devastating to my working life but I'm on my way back. Due to the impact of singing and teaching on the symptoms of my conditions, I am now fortunate to be doing my research project in this area as one a range of non medicinal options to counteract specific negative effects. Having experienced this first hand myself I have good insider knowledge. I also have read many, many stories of peoples journeys on this forum. I feel as if I'm near to coming out the other end. Making my way out of the black hole I felt at one point. I need your help to help. If I compile a questionnaire to inform my research and tell it how it really is would you help me? I need to show in the study who are the people suffering from PMR, GCA and fybromyalgia if you have that too. As I'm reading research and medical papers I'm establishing what I need to ask to get the biggest benefit from it. Would you all help me out and fill it in. Or even let me know if there are other questions you would like included. This changed my life in no small way.

87 Replies
oldestnewest
Mary63

Definitely

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jinasc

Have you read this one: Dr Helen Twohig did a study of patients and I am wondering if you have read it.

Title: ' suddenly felt aged.'

eprints.whiterose.ac.uk/852...

It is good on patients experience.

Is it possible for you to put on here, the questions you have so far...........or do you have a link we can look at?

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Singr
Singr
in reply to jinasc

No I did not, thanks for that. I should have asked that also.

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Poopadoop
PoopadoopAmbassador
in reply to Singr

In the pinned posts there is a list of different research into PMR....that might help. If you look up the poster, Sara, online she is part of a research group that have done a few bits of research, so if you look at her publications it will basically start to provide a literature review.

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Singr
Singr
in reply to Poopadoop

That's exactly what I need. Thanks for that.

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Singr
Singr
in reply to Poopadoop

Wow Lit review in the one place. This reaserch is gold. Thanks!!!

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Singr
Singr
in reply to jinasc

This looks great thanks very much

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Constance13
Constance13
in reply to jinasc

I think this article should be handed out to every patient at diagnosis.

How many had months of pain and discomfort and no understanding from doctors/rheumatologists.

What's the matter with these doctors? Are they too mean to print out a few pages of info? It would save them masses of time!!

2 likes
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PMRpro
PMRproModerator
in reply to Constance13

Most of them don't even know it exists ...

1 like
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Constance13
Constance13
in reply to PMRpro

I know! It makes me sooo angry.

I was one of the very lucky ones - went to my doctor, he did all the right things, immediately took blood (himself) said "I know what you have, but will wait for the blood results". He phoned me at 7.30 am the next day and told me to come to the surgery that day. ESR 88, CRP 39. By the evening I had taken my first pred. THAT was how it should be done!!!

4 likes
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prunus
prunus
in reply to Constance13

Was this a German Dr or an English one?

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Constance13
Constance13
in reply to prunus

A German one, of course!!

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prunus
prunus
in reply to Constance13

I wonder why that was the answer I expected?

1 like
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Singr
Singr
in reply to PMRpro

Too True

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DorsetLady
DorsetLadyPMRGCAuk volunteer

I’m sure if you provide a draft questionnaire people will complete it, and also add any comments on specific points they would like addressed - if you haven’t already covered them.

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Singr
Singr
in reply to DorsetLady

Thanks I will. It might be a bit chicken and egg at the moment finding out what the most useful questions will be so I'll make it sufficiently broad with comments boxes.

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crafty_grannie

Happy to be involved.

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scats

What a wonderful project I'm sure many would be willing to help. Good luck.

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Singr
Singr
in reply to scats

Thank you so much.

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Ranchero

Count me in. All success to you and your project.

2 likes
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Songbird69
Songbird69
in reply to Ranchero

..... and me too. 😊

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Marilyn1959

More than happy to complete questionnaire. I too was a singing teacher when PMR hit so am particularly interested in your research findings. Pm me if you want. I hope you get a positive response to support your studies.

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Singr
Singr
in reply to Marilyn1959

Thanks for your support Marilyn. Do you still teach?

1 like
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Marilyn1959
Marilyn1959
in reply to Singr

I taught in full time education for 37 years. Last 16 of which were in role as Headteacher of a Junior School, though always ran school choirs and music classes. Took early retirement in 2015. Quickly realised needed part time work, so went back to my roots and secured part time advisory role with Music Services in local authority. This work involved working with Leadership Teams to develop music education in schools. In addition I worked with Royal Opera House to develop borough singing strategy. In practical terms this led to my working directly with school choirs across the borough, leading a borough choir, as well as delivering singing workshops for children and staff training singing workshops. Was loving it (despite onset of PMR in June 2017), however an accident and subsequent broken shoulder in Dec 2018 has meant I have been on sick leave since. My job has been left open for my return, but they can't keep it open forever. I suspect I will have to call it a day, if by the end of September I am unable to return. :( :( :(

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Singr
Singr
in reply to Marilyn1959

Marilyn sounds like you were very much in and around it. So sad that you might have to walk away from your job. They couldn't keep my job open so I had to walk away. Hope you make progress enough to enjoy your retirment.

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Longtimer

Yes, anything that will help....so glad things have turned round for you.....

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Kymandbob

Yes indeed !😁

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JMTS

If you ever feel like getting away from it all you can come down under and have a holiday with me I have a spare room. Sounds like you deserve it. My eldest son is a teacher.

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Singr
Singr
in reply to JMTS

Lol don’t tempt fate. I’m an avid couch surfer. Lol

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Hellyowl

Happy to help with research. I have just completed a research thesis

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Pippah45

I would be happy to help with a survey. Done a few through survey monkey on other topics.

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Singr
Singr
in reply to Pippah45

Yes I think that’s what I’m going to do.

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Marijo1951

Count me in too.

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Choco-Holic

I’m happy to help too x

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Thelmarina

Yes, count me in if I can be of use

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Suffererc

Yes

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Lochy

Would love to help. Good luck.

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powerwalk

Yes of course!

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borednow

Definitely!

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Stiffjoints

More than happy to help!

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PMRpro
PMRproModerator

Me too - PMR stopped me singing, the breath control was gone and then I suspect large vessel vasculitis took my voice, couldn't guarantee the right note would come out :( Couldn't sing a hymn never mind anything decent ...

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Chrisellie

And me. X

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Suet3942

Me too...

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S4ndy

I used singing as part of my work before PMR. Singing whilst helping people with dementia to exercise was very rewarding and the singing was effective in getting them to join in. PMR has not only scuppered my working life, had to give up working in 2016, but it has nicked my voice too! Sound dreadful these days.

I have had my own personal trials with the DWP and I don't wish that on anyone. Hope you continue to make progress and I would be happy to help xxx

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Evercurious

Would love to!

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nuigini

Happy to help with your research.

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camerashy

Would be happy to be involved

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HeronNS
HeronNSAmbassador

Sure, count me in.

Good you are taking your time to formulate the questions. It's amazing how often one can be filling in a questionnaire and one's particular viewpoint can't be expressed, or at times the question is ambiguous because, if you're like me, you don't always get the "obvious" point first!

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Singr
Singr
in reply to HeronNS

Might be a good idea to send draft for comment first. I don’t want to revisit.

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HeronNS
HeronNSAmbassador
in reply to Singr

Sounds good. Check out the wording with family and friends. They are usually very good at spotting something which is not clear - thing is it could seem very clear to you but someone else will let you know if there is a question.

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dillydally1

count me in too x

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Joan-E-D

I am happy to help with your research too. Singing has been the highlight of my week and luckily for me my voice wasn't affected by PMR only my stamina. i.e. I couldn't stand for too long and at first I was quite exhausted after a singing session. O.K. now though.

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Rosbud

Of course I will x

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SheffieldJane

I’m in! X

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linda49

Happy to help with your research too.

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Highlandtiger

Yes, me too.

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Nap1

Yes considering this all started for me in 2011 and is still active. (Unfortunately more than I). Questions and room for comments which will allow you to expand your questionnaire; eventually it can be a book with 1,000 contributors.

Marilyn

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Singr
Singr
in reply to Nap1

Lol that would be great.

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Green_girl

Anne O'Brien, Senior Lecturer at School of Health and Rehabilitation, Keele University has been doing research into the role of physiotherapy in the management of PMR. She came to speak to us at the London Group last year. Very interesting to learn how exercise could help. Happy to ask her if she would contact you if you would like - Private message me. I would be happy to help too...... Lost a huge amount of life to this condition, but thankfully not my home - how awful for you. I'm now fit and well (hurrah and double hurrah!) - but still feel the condition has left me with weaknesses i didn't have before.

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Singr
Singr
in reply to Green_girl

That would be amazing. Yes please.

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Singr
Singr
in reply to Singr

I’m glad for your positives. Hoorah indeed. I’ll be damned if I’ll let it ruin the rest of my life.

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Fergyfish

Sure...happy to fill in a questionnaire....

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Avrael

I have fibromyalgia as well as recovering from PMR, I would certainly be interested in your project.

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Graememidsussex

Hi Singr,

Just opened my email, I'm happy to help with a questionnaire. No problem.

I had 3 months of agony, before a friend diagnosed PMR, I then had to go back to my GP and tell them what I was suffering from. This was after several visits to A&E, 4 days in RSCH in Brighton (taken there by ambulance), and several appointments at the GP !

Best of luck with your research.

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Singr

This is happening too often, sadly.

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Linnetbird

Happy to help. Over the past 4 years I've become sceptical that Prednisolone is the answer. Pred is cheap as chips, but after a huge initial relief of PMR on a high dose, the downsides of reduction, osteoporosis, steroid myopathy become hard to deal with themselves. Much, much more reasearch is needed and very quickly to help the huge number of sufferers.

If your research can help that would be wonderful.

Linnetbird

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Singr
Singr
in reply to Linnetbird

I totally agree. 100%. Apparently the issue is so vast now in uk. Other methods must be sought. And better knowledge among GPs on the issues faced.

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roshough

This looks great. There is so much research on how singing and joining a choir can help your mental health , that I think one tailored to people who get exhausted quickly or don't want a conductor who shouts at you or expects too much...that would be great. I'd be happy to fill in your survey.

1 like
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Singr
Singr
in reply to roshough

Watch this space 😉

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Christinemac

I’m game to help....... only for this site I would have been very sad and very worried. I still need help n rely on health-unlocked! I’m all the way here in Blarney Ireland!

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Pollyanna16

Happy to try & help x

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Stimpey

Of course! God luck with your research and recovery, and great that you are on the mend and making good use of the horrible roadblock. I am starting back at work on a Wednesday afte 5 months off sick, I’m down from 60 to 10 and am excited but anxious as I’m a nurse and my brain still struggles to find simple words but fingers crossed!

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IdasMum

Yes, count me in.

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ragdollcat4

Happy to help. Have you posted the questionaire on this site as I can't find it?

1 like
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Singr
Singr
in reply to ragdollcat4

Not yet. I wanted to establish interest first. The response has been great. So I’m in process of putting one together.

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BirmLiz

Hi Singr,

Nearly 3 years after taking my last Pred I think PMR has left me with some not very nice conditions to remember it by. Would like to see one of the questions tackling this. Only too happy to do any questionaire that will help. Got to fight back anyway we can! Blessings to all sufferers - one day there will be a proper cure xx

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Janann25

Yes, I'd Iike to help in any way I can.

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Kirraweelady

More than happy to help

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Canary77

hello Singr. i would gladly assist you in your good work by answering your questionaire tho my details may not be relevant. I am retired and 77years old. I have only had PMR for 3 years well managed with prednisolone until I had a flare up about a month ago. It has impacted on my life but not significantly. I do feel it has made me prematurely old but I am fighting back and on good days am positive that it will burn out and I will regain some of my former vigour. Good luck with your PhD.

1 like
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Singr
Singr
in reply to Canary77

Everyone’s experience is relevant. The more people the more valid the research becomes.

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Lanakay

Yes, I’ll do it. I was diagnosed two years ago and I feel my life is changed forever. I once thought I would one day get back to being me again. I’ve pretty much given up on that. I am 72.

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Singr
Singr
in reply to Lanakay

Thanks for offering. I know I will never be the old me. I am just a different me. There are good things and bad things about that. I'm kinder to myself and more tolerant of what others are going through. I no longer push the limit like working 3 jobs and expecting to continue that indefinitely.

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Lanakay

On Good days I do well but there are days that everything hurts and I just feel sorry fo myself.

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Singr

I think we all feel like that from time to time. What I’m trying to do is figure a way to limit that way of thinking as much as I can.

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tangocharlie

I'd start with the end in mind 'What questions do I want to find answers for?' For example do you want to know: How people get diagnosed? How effective are steroids? How long does it last? What problems do people have with symptoms/meds/dealing with doctors/getting benefits? I too have had a similar journey to you in some respects, unable to work, lost my job and livelihood and had to battle for years to get some benefits. Even now family and friends who have never been ill just don't get it. The NHS and DWP systems just don't work for people with autoimmune conditions like PMR. I too am angry. but trying to turn the anger into positives by getting involved in the PMRGCA charity.

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Singr
Singr
in reply to tangocharlie

Thank you so much for this. It’s very helpful.

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Singr

Wow what a journey I've been on since asking my orginal question about supporting my research about fatigue. The main aim with this phase was to establish there was enough of a community to make sure the research was worthwhile. That has been established without a doubt, over 1000 responses which my Uni will be delighted with. Also discovered there are many more communities out there who could be approached. Absolutely taken aback by the response and passion in this and all of the other communities I've contacted. I've also come across what I think is a major issue in the stats reported for fatigue nationally. I don't even know if I can take that one on. But at least I can highlight it as a possible issue, I'm due to do my presentation next Saturday to have my proposals heard and all being well move on to the next phase of my research when I will be compiling a questionnaire which will be made available to all for input before being finalised. Thank you all. Fingers crossed for Saturday. One positive to come out of this is my education and perhaps that of others.

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