Attention Eileen

I've seen this info about US support group.  Do you know if anything is being started in Canada?  It would be no more useful to Canadians to be in a US group than participating in UK one - we have a completely different (publicly funded) health care system.

Believe it or not, but nearly all countries have different health systems.

So we all can still help each other out.   Don't you have Snowbirds in Canada?

I will send you a PM so we can chat. 

I was just thinking about the way we access medical care really, not the sharing of symptoms and strategies for dealing with illness which of course is fantastically helpful no matter where we live! 

The UK and almost all of European countries have publicly funded systems but they are all different. There are parallels between Europe and Canada - but the US is totally different and I have to explain this so often on one or other of the forums when someone comes along and says "You must..." that really does not apply. I have even had someone who criticised our "terrible and uncaring" system when they had never used it and on the basis of one person having a rough time with an RA flare at the weekend!

There are a few Canadian people between the forums - but even they differ in access to care depending on whether they live in a populated rural area, a city or totally out in the sticks.

I guess there are two types of support systems.  This kind, all online, and the kind where you can contact people in your own community.  From my point of view, the online forums have been wonderful, my whole mental outlook has changed remarkably for the better since I discovered I wasn't alone and there were in fact wonderful people who can offer great advice and simply be there to "support".  But it would be nice to share experiences with others who are in the same boat regarding our access to the actual treatments we require.  Which is why I pointed out that Canada and the US are completely different as so many lump the two countries together as just being "America". Given that PMR doesn't seem to be that rare a disease I am astonished that I had never heard of it before, and even more surprised when I find that a slightly older member of our extended family has been suffering for longer than I have.  If we had broken limbs or heart disease or diabetes or cancer, everyone in our circle would likely know.  Short of going around with a sign on my forehead proclaiming that although I look well, I have this disease with the weird name.... how does one find that community? 

You won't believe this, but 8 years ago there was a thriving on line community in Canada and I found it and met Ragnar, who lives in Sweden through that site.

I still keep in touch with Ragnar and we met up in the UK.

Will be in touch with you soon, just had too many emails this am and one from a Canadian PMR person, lives somewhere in the wild and it is a beautiful place. Can't remember the name, but will ask when I respond.

Oh yes - and the online ones function very well for the people who are computer literate but in the several real life support groups in the UK there are very many people who want to know nothing about all the information we can disseminate on here - all they want is a coffee and a blether and maybe a short talk about something relevant from someone whose title they can get a handle on - physio, dietician, pharmacist. The fact it only happens once every 2 months, 6 months n some cases is immaterial while others feel the need for an all day all week - not necessarily 24/7 though in fact the forums are because of their international nature - source of comfort and company.

Believe me - most of us in the UK are very well aware of the differences between the countries north and south of that 49th parallel as so many have relatives especially in Canada. Some of us even know how to hear the difference...

PMR is the most common inflammatory soft tissue arthritis in the over 65s - not that you'd know given the blank looks from doctors sometimes! You probably heard loads of elderly people you knew as a child complaining about rheumatics or lumbago - and a good few will have had PMR.

You may be able to make contact with others more locally by asking your medical practice if you may put up a notice inviting people to a coffee morning. Or making visiting cards and getting the doctors or nurses to pass them on to patients they know with PMR or GCA - they will be in regular contact for their prescriptions. That does depend on cooperation from your doctor. Or put an ad in the local parish magazine or paper, contact the local radio station.

No group gets together without someone taking the initiative but it doesn't have to be a formally organised "meeting" - meeting at a communally convenient pub for lunch of a coffee works too as a start and then see how it develops.

Eileen

Just to let you know, Pam and Jennifer and the rest of the Patients Representatives on the international committee, managed to get the age down to 50+.  When the new guidelines are issued, it is a victory for our voices.  Yes a small one, but it will certainly help those in the future who would have been told  'You are too young' which as you well know has happened many times in the past 8 years that we know.

To echo what Eileen has said and just to re-inforce it.

I attend two support groups in different arease, 25% of those people have no internet access.  They either cannot afford it or too old to bother with it.    Some have families who have bought laptops and taught them how to make and receive emails, anything more like the internet - for get it.

Yes, I am 7 years over three score and ten.  But I worked in the communications world and started out on Merlins and ended up on Mainframes, PCs and laptops. However people I went to school with and I still meet up with, of those 30% just don't want to know.

Wait till my generation has popped its clogs, then if we can afford it, everyone will be on-line.

I like the real meetings,  I get laughter, tears, hugs and kisses  - beats the internet any time in my book.

 

Sounds like you are having a rough time.  Have you got any kind of support in your daily life?  You know you can always come on here and vent!

Don't give up  yet, try Bowen Therapy.  It can and does work wonders.  Book three sessions (1 hour per week for three consecutive weeks) if there is no improvement then the therapist will tell you it ain't working for you.  Best money I have ever spent. I just go every once in a while now for a booster.

There are some statins,  Primvastatin for one, which don't come with muscle aches and pains.   Talk to a Pharmacist they know more about drugs than anyone else.

My Cousin who had a stroke over five years ago and now is 86, the stroke clinic put her on a bowl of porridge every morning followed by a whole orange.  Her cholesterol level went down to just below 6 and has stayed there every since with just half a primvastatin every day.

Tyr the porridge and orange and see if it helps - but I am unsure as you had a 5-bypass.

On another thread the comment was "quality not quantity" - I don't want another 25 years if it is going to mean I can't move, am permanently in pain and can't function. I think it is time for you to have a LONG conversation with your doctors and point out you are now demonstrating well recognised side effects of statins - what now?