Anyone else find most people have never heard of PMR?

[Loco99]

My GP and Rheumy have heard of PMR (thank goodness) but I find that most other people including some other medically related personnel look at me blankly when I mention that I have PMR. I sometimes feel tempted to say I have Rheumatoid Arthritis which everyone seems to heard of.

[Sue8]

lol, everyone I speak to has never heard of PMR though heard of fibro. I usually explain the difference. I also have RA and though sometimes it is hard to know which pain belongs to which illness.

keep smiling

Sue

[Bethy]

Not only had no-one else heard of this illness, but neither had I. Thank goodness for the PMRGCA support groups who helped me through the worst of the illness.

[Hidden]

Interestingly whilst I had never heard of PMR a lot of people that I speak to actually have. It seems to me that it is the over seventies who know a sufferer whilst the younger ones have no knowledge of it. I belong to an embroidery group with eight members and three former members. One member has a neighbour with it, one husband has it and one former member has recovered. Perhaps we are just an unlucky group.

Pat M

[Hidden]

Hi Locco99

My father almost certainly had this illness, but I was never told it's name so did not realise it at the time. He was on steroids and became almost incapable of doing manual work. I nursed a client with PMR and her son also has it now.

My hairdresser and 2 of my ex colleagues each have a parent with PMR. I also know other folks who know PMR sufferers. To tell the truth, I had never heard of it until it was suggested that I might have it. One GP described PMR to me as not rare, but unusual. I think that just about sums it up. Also Polymyalgia Rheumatica is quite a mouthful for people to remember - so easy to forget.

Pats.

[BromleyPen]

I saw a physio on Monday and although he asked where I ached (at the time almost everywhere having had to walk a distance to get a ticket for my car and then miles inside the hospital following, not very good, directions to the department!) he didn't seem to know or understood much about PMR. He knew a little more by the time I left!

In a group of about 200 in my contact list I know one friend has had PMR for over four years and is down to 1mg. Another friend has PMR for the second time. My husband's cousin (man) had it a few years ago for 18 months. A friend's friend (man) has been diagnosed with it too. My Mum is still taking a higher dose of pred than me for her PMR after more than 30 years. The lady who runs the Tai Chi class I started last Friday had just met her first person with PMR.

So that, including me, is 7 out of 200. Of course there could be more that I don't know about!

When I say I have just been diagnosed with fibromyelgia more people seem to have heard of that yet no-one I have met has told me they have it or that they know someone with it!

Finding out how many people with PMR each of us knows (outside of forum) would be interesting.

Penny

[Annodomini]

Strangely enough my experience has been the opposite. Most people I mention it to say that they know someone who's had it. One of my best friends had it ten years ago and my father also had it. Both made a speedy response to steroids.

[chubbycheeks]

When people use to look at me blankly when I told them I had PMR, they thought I meant I had a sore leg or arm or neck and sometimes replied "me too". So then I decided if anyone asked what was wrong with me I told them I had an Autoimmune Disease PMR a form of Vasculitis of which there is no cure and I have to wait for it to go into remission - if I am lucky, the response was usually OMG. I don't or didn't want pity, just empathy from those closest to me x

[Hollyseden in reply to chubbycheeks]

Wish I could remember that 😜 It very clearly states what PMR is. Predhead won't let me remember though. I'll blame that anyway 😋

[floramay]

hi all i have pmr ,fibromyelgia,R A, and i get pain all over,all i get is whats that. because some days you look well,people think it can be that bad.........what,p. s. didint know about the hair thing just great what else........arrrrrrrrrrrh

[suzieh]

I had never heard of PMR until my Dr told me she thought I might have it. She suggested I looked at this site too - very pleased she did as I find it really supportive. Only one of my friends (ex nurse) had heard of this illness; no one in my family has had it or heard of it before.

I am interested in all health issues and have never seen it discussed in Newspapers or magazine articles - has anyone else? How many over 50's suffer from it?

My nurse friend says positive thinking is the way forward ; keep the exercise going and accept that the steroid treatment is helping you feel good. Most women past menopause seem to grow facial hair which looks bad in certain lights ---- put your glasses on and check!! Using a special facial hair remover cream works but do it before bedtime so any redness is gone by morning.

[Celtic PMRGCAuk volunteer]

Hi suzieh

Regarding your question "have never seen PMR discussed in Newspapers or magazine articles - has anyone else?

Sadly PMR hasn't received the publicity it so desperately needs and deserves up until now but that is changing - articles have been published in the Daily Mail Health pages and elsewhere during the last couple of years.

When first diagnosed I was fortunate enough to come across an article in a women's magazine giving details of someone running a PMR support group in East Anglia (now a trustee of PMRGCAuk). I contacted her and after our chat I came off the 'phone feeling supported and realising for the first time that I wasn't the only person with PMR and GCA - it felt as though all my birthdays and Christmases had come at once!

We now have wonderful forums such as this but I do feel concerned about those sufferers out there who are not connected to the internet. Hopefully, we will 'pick them up' via the increasing number of support groups across the country and their local advertising - for instance, as a support group organiser I place posters provided by PMRGCAuk, and personalised, in GP surgeries, community centres etc. So word is definitely getting around across the country.

[iforget]

My GP recognised it straight away when she saw me but other than the docs at the surgery, nobody I have spoken to has even heard of it. ...not even the doctor and nurses at the endoscopy unit who tried to man-handle me onto a trolley and onto my side and who yelled at me when I cried because of the pain and winced because the BP cuff inflating was agony...

Then yesterday when I went to see the dentist she asked if anything had changed with my medical details and I mentioned PMR (just the initials) and was amazed that she knew exactly what it was...and she seemed interested and asked some relevant and sensitive questions. It was refreshing.

My Mum is in her 70's but she had never heard of it and doesn't know anyone with it...and all her friends are of similar age and they are never shy about sharing details of their various ailments.

I would love PMR to get more exposure but its not glamorous so probably won't... I don't feel it helps to research and find websites calling it "muscle aches" and saying "it goes away after a while.."

Muscle aches indeedy...hah!

[Dovelady]

Hi I have found two articles in the Daily Mail about PMR and GCA, both some time ago, if I can work how to add a link and its allowed I will. But having been only just diagnosed I had Never heard of it and neither had anyone I have told.

[Dovelady]

I couldn't work out how to link it but if you Google this then it should take you to the article.Stiff neck? Achy jaw? You may be about to go blind

By ALISON SMITH SQUIRE

UPDATED: 00:52, 16 August 2011

Read more: dailymail.co.uk/health/arti...

Follow us: @MailOnline on Twitter | DailyMail on Facebook

There was a second article but I can seem to find it but I will sleuth on and will post if I do. When I said some time ago I meant written some time ago!!

[Dovelady]

And this one.

TV boss who couldn't get out of bed thought she had overdone it. In fact she had a crippling disease that can blind you

By DOROTHY BYRNE

UPDATED: 08:25, 26 January 2010

Read more: dailymail.co.uk/health/arti...

Follow us: @MailOnline on Twitter | DailyMail on Facebook

[Amber1414]

I had never even heard of it when I went to the doctor a few years ago because I was in so much pain and couldn't climb the stairs! None of my friends or family have heard of it and the chiropractor in my office didn't know what it was!

[mad-country-lover]

I had never heard of PMR and out side this group I don't know any one else who has heard of it either, Initially I had comments from friends who seemed to think that after a course of steroids for 2-4 weeks I would be ok ????? , and comments like... you will be over it next month … and when can we book our holiday to come over …. and can you drive 7 hours ??? and help me paint my lounge in April .. which are all the normal things I would have been doing ... oo la .. so I started saying I have an auto-immune disease , That word seems to hit the spot, they still don't understand but know its not just a virus type condition with a 2 week span .

It could mean a multitude of things .

Take care here is a good place to be x

[OutdoorsyGal]

It’s an invisible condition, so unless a victim TELLS someone about having PMR, no one will know. I even looked HEALTHIER while on prednisone: rosy cheeks and fewer wrinkles!

Though the stiffness should give us away...