explaining

[pwalker801]

Does anyone have a shortened explanation of PMR/GCA they give to people? I'm kind of at a loss so the explanation tends to get long and wordy...... Most people don't get it anyway...

[PMRpro Ambassador]

It is an autoimmune illness - your immune system has gone wrong and attacks your body by mistake. This causes a flu-like illness with muscle stiffness, pain and swelling which goes on for years and makes you feel ill all the time. It is a bit like rheumatoid arthritis but luckily doesn't destroy joints.

But honestly - even that short will have them yawning. They don't usually care - they asked out of politeness/the done thing, not interest.

[pwalker801 in reply to PMRpro]

thanks for posting---I've found friends and family just want you to be well, so things can return to "NORMAL" I'm coming to the conclusion those days might be gone. and yawning is correct---crazy deal!!!!

[Hidden in reply to PMRpro]

*laughing* Yes... they do yawn even at shortened version!!!!

[powerwalk in reply to PMRpro]

Ha yes - and sure then you're all better now - so whats to talk about!!

[Hidden]

I gave people Dorset lady's overview and it seemed to help them understand a bit more.

[pwalker801 in reply to Hidden]

I printed this out, really good information

[DorsetLady PMRGCAuk volunteer in reply to pwalker801]

It’s a bit wordy I know, and not all will appreciate, but some hardy interested souls might be!

Initially you’re better to stick with PMRpro’s short intro - will probably satisfy most!

[Singr in reply to DorsetLady]

What is your version?

[DorsetLady PMRGCAuk volunteer in reply to Singr]

This one -

healthunlocked.com/pmrgcauk...

[Singr in reply to DorsetLady]

Thank you so much for that. It really was helpful. Read it to my brother. Made good sense to him. Informed me more. I'm slighly shocked now to think that it will take longer than the 18 months they medical folk have told me.

[DorsetLady PMRGCAuk volunteer in reply to Singr]

Yes, that what most say!

Not sure why doctors go for that timescale, but now some of the more enlightened ones are recognising that it does last a lot longer.How long it takes that info to get down to all doctors I’m not sure.

From discussions on here some think there may be different versions of PMR, the one that we talk about and a lesser version which may not last as long - hence the 2 year scenerio! Don’t know how true that is, but some seem to get through it easier than others.

But at the moment it put the patients under pressure, if they think they are going to be back to normal with 2 years and are not then they feel it’s their fault.....and it’s certainly not!

Take care.

[Hidden]

healthunlocked.com/pmrgcauk...

[DianeA1]

Hi pwalker801,

PMRPro is right on. I just smile and say I have an auto-immune disease and compromised immune system. If they continue the conversation I say it is under control and not life threatening or contagious.

but if they still want to keep talking about it, I let their questions guide how deep into the weeds I get in answering.

Most back away slowly...

But like my Mother, who just cannot comprehend her daughter has something wrong, I stick to a couple of simple facts.

But here is the good news, come to the people here on this forum who really get it if you find that you need to talk about any of it!

[pwalker801]

thanks DianeA1, I'm the news right now with my friends so they all have a lot of questions, but like your mom don't really get it......... some worse than others. am really greatful for this forum -- have learned so much from people sharing.

[Rugger]

You could direct them to the PMRGCAuk charity's website - pmrgca.org.uk.

This year the charity is 10 years old and has launched an appeal to raise £50,000 to extend the work it does and employ more staff. The paid staff are a half-time director and a membership secretary one day a week! There is no office, so overheads are low. A lot of work is done by volunteers. (I'm a joint Group Organiser up in Yorkshire.)

As you're "in the news" at the moment, maybe your friends and family would like to make a donation, buy a raffle ticket or sponsor you for something? The charity has leaflets that you could give to anyone interested - one has the symptoms described and another has information about the work of the charity, which includes having a presence on this forum.

Someone else may wish to add something I've missed.

[Telian]

..plus the steroids only treat the symptoms not the illness - hence the long journey to 'normality' tell 'em...

[Daylily2000]

I just say that PMR is an inflammatory disease of the muscles, treated with prednisone, and sometimes goes away on its own, or may last for many years.

[lcove]

GCA is an auto-immune disease that causes Inflamation of the arteries and PMR is a type of arthritis associated with the disease.

[Rugger in reply to lcove]

PMR isn't an arthritis, since the word 'arthritis' means inflammation of a joint. In PMR it's our muscles which are affected. (Polymyalgia = many/muscles/pain!) I try to explain that it's the blood vessels supplying my muscles which are inflamed.

[Janstr]

I often now don't tell people I have it, after telling someone at Bridge who asked why I hadn't been there & getting a shock reaction as soon as she heard "autoimmune". She immediately changed the subject & I had the feeling she thought it might be contagious. I'm probably being paranoid. I now always say it's not contagious if I do tell people.