Hello

[Dragonflys]

Hello. Glad to be here.

[PMRCanada]

Welcome Dragonflys. I’ve looked at your profile. Perhaps you could share some more information about yourself....do you have PMR or GCA, or both?

The forum members here are both filled with information, and compassion. Ask us anything, or feel free to just “vent” about whatever is going on for you.

[Dragonflys in reply to PMRCanada]

Hi! I just filled in some more info and bio. I’ll try and get an avatar pic soon. Thanks and glad to be here!

[PMRpro Ambassador]

Welcome - do you actually have PMR or GCA? SOme information would be helpful

[Dragonflys in reply to PMRpro]

Yes I actually have PMR. Why would you ask that? Sorry I just haven’t finished the info - I wanted to get a coffee as it’s early morning here then return to it.

[Yellowbluebell in reply to Dragonflys]

We ask it because we have a lot of people who find their way here by mistake. It was a polite question. YBB

[Dragonflys in reply to Yellowbluebell]

Okay that’s understandable. I put up a short intro because I was not sure what to say. I really don’t like going on about myself. But I have added the bio now.

[PMRpro Ambassador in reply to Dragonflys]

What we are mostly interested in on the profile is your medical history because that is a central place to check on what/how long/how much pred/other medication to help answer any questions you ask later rather than having to trawl through old posts/replies. And as for a first post - most people ask the question that brought them here when they googled it

One of the characteristics of this forum is that every post and reply is seen by a moderator very quickly - and we reply if someone looks lost. You did look a bit lost

[Dragonflys in reply to PMRpro]

Hi I think it’s great that you are so quick to reply and really on top of things.

Thanks and appreciate your response and help.

[PMRpro Ambassador in reply to Dragonflys]

When someone puts up such short comment we look at the profile - and yours has nothing on it. People do land here by mistake - that's all.

[SheffieldJane]

Welcome! Tell us why you’ve joined.

[Dragonflys]

Hi I just finished my bio. It’s early morning just got my coffee so I’m taking it in stages.

But I’m being asked so I will tell you:

I joined because I have PMR and would like the support. Outside of my rheumatologist there is no other support. So that’s why.

[Rosbud in reply to Dragonflys]

Well done for finding this really supportive, knowledgeable forum, you will find nothing but kindness and gentleness here x

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

From your bio -“Life is good except for the PMR” - what in particular makes it not good?

Are you painfree?

You can enjoy life, maybe not in the fast lane - that’s if you did before. You say you are still painting and drawing so that’s good.

Okay you may not be able to jog, by you can still exercise, walking, pilates, yoga.

You have family close by - so all in all, I would say you do have a good life - and many in here would agree.

I think you may be hankering for your old life, and we all do initially, and there’s no point in that - embrace the new one - and concentrate on what you can do - not on what you can’t.

As you say you are only a year into your PMR, so some way to go yet - and the recent move will have caused some stress, so just ease your foot off the pedal for the moment. ..and maybe consider a slow taper such as this -

healthunlocked.com/pmrgcauk...

You will get off the Pred one day, but not until your PMR is in remission - and nobody can tell you when that will happen - so in the meantime go with the flow.

[Dragonflys in reply to DorsetLady]

Hi yes thanks for the supportive words! Life is good - I’m grateful every day - the PMR part is the thing that makes me use Prednisone which I wish I didn’t need. I don’t like some of it’s side effects. I hope new research will someday uncover what really triggers this autoimmune response.

I’ve had a very PTSD type of life - a daughter’s battle with anorexia and near death many times, at same time both my parents died of cancer and my husband had open heart surgery, blood poisoning , then after that prostate cancer. He’s okay so far - we are in the clear but it seemed for years that things were really hard. And that’s just a few things.

I often think maybe this PMR is a result of this. Even so I’m optimistic and enjoy my life as it is. I’m grateful every day because Life is precious and health can’t be taken for granted.

I gave up my music “career” as it was because I became a caregiver but I don’t miss it really. Singing in bars and being a bandleader are not easy especially as a female. I had quite a few bad experiences being called terrible things or had to deal with very immature alcoholic drug user musicians. So I just walked away from that.

You

Can find me on ITunes or Spotify - to hear a little clip. I’m proud of what I did write as it’s not bad.

Anyway that’s enough blabbing about myself as I sound like I’m an egotist.

[DorsetLady PMRGCAuk volunteer in reply to Dragonflys]

I would say that all that stress was certainly a precursor to PMR - many of us on here have similar stories - some not quite as extreme maybe..... but stress is most definitely a cause of our immune systems go into meltdown.

It’s also a factor for flares - so try and avoid as much as you can -, not easy life just gets in the way.

Take care - and any questions just ask.

[Dragonflys in reply to DorsetLady]

Thank you for your kind words ! I hope you are doing okay too. With all this Covid 19 going on it’s a strange time and stressful time for all. Sending you a very heartfelt thanks!

[SheffieldJane]

You have clearly landed in the right place. You will find kindness, understanding and support. There are many experienced and knowledgeable people who contribute regularly, prompted often by specific questions. Sorry if your initial responses were not what you expected. As you’ve discovered DorsetLady is one of our star contributors.

[Dragonflys in reply to SheffieldJane]

Thank you !

[nuigini]

Welcome. I'm so happy you found us.

[Dragonflys in reply to nuigini]

Thank you !

[Lonsdalelass]

Hello Dragonflys! Pleased you've joined us. This forum is great for reassurance, knowledge and company, to name but a few! Hope you're having a good day.

[Dragonflys in reply to Lonsdalelass]

Thank you - amid this Covid 19 crisis coping well. As we all must.

Hope you have a good day too!