DM article

[Jeanjean16]

Having spent the last six months with PMR and getting my family and friends to appreciate the difficulties I am experiencing, I was disappointed to read this article. Once again PMR is described as stiffness in the joints in the morning, how I wish this was all it entailed. Why didn't the DM doctor describe the awful pain we suffer on most days, steroids don't take all our symtoms away.

[Annodomini]

Not much of a doctor if he doesn't know that 'myalgia' relates to pain in the muscles! 'poly' means 'many'.

[PMRpro Ambassador]

As I said on the other thread where this is mentioned - it's actually one of his better efforts!!! Most are even wishy-washier... I can only say I'm glad he isn't my doctor!

[piglette]

He is only giving 10-12mg for starters on steroids as well. NHS cut back perhaps.

[fuzzybear]

No piglette my doctor has not heard of any cut backs on steroids.

[PMRpixie]

I, too, get upset with the fact that most information on pmr downplays the reality of this condition. When people ask me (what I have) I explain but know if they look it up the "stiffness in the morning" doesn't begin to describe what we endure sometimes 24/7 !  If I explain how I really feel I must sound like a hypochondriac. This disease is pretty complex but most literature downplays it unless people are interested enough to read a book which is unrealistic. I kinda feel we suffer in silence?  Sorry for wining😕 And....it's not actually "joints" but rather muscles. Joints make it sound like arthritis.

[markbenjamin57 in reply to PMRpixie]

Hello alison12345. 

You're not whining at all - and I agree with you!  It's hard to describe the crippling pain and stiffness of PMR (not to mention deathly fatigue and all of its consequences) without sounding overly dramatic - especially when you look ok on the surface.   Plus, explaining what an illness like PMR is, exactly, can often be hard to do without watching people's eyes glaze-over with either confusion and / or an inability to relate.

With people other than my nearest and dearest (and where it's necessary to explain), I just keep the language as simple as possible and say that I have a chronic rheumatic condition that is painful all-over and saps my energy, and I'm on powerful drugs to manage it.  The analogy of 'the body's energy battery running at half-power' seems to get the message across without all of the medical jargon.

This is where this forum is especially helpful - at least we get daily reminders from others that it's not 'all in the mind'!

Best thoughts and try to stay positive on the journey     

[PMRpixie in reply to markbenjamin57]

Thanks so much markbenjamin !  Is always encouraging to know others are fighting the same battle and they understand exactly how I feel.  AND.....they are willing to share.😉

[markbenjamin57 in reply to PMRpixie]

Thanks Alison, I do my best despite a recent 'slating' from another (nameless) member here who thinks I'm here just for self-promotion (as if..?!).

We're all on the same journey - keep faith and try to keep smiling in between the tough bits 

MB

 

[PMRpixie in reply to markbenjamin57]

MB.....Smiles right back at ya 😉

[HeronNS in reply to markbenjamin57]

Markbenjamin, I agree with you.  The odd thing is I don't think I knew how ill I was at the time, not until the crisis that brought me to a meltdown in a clinic waiting room.  I even remember replying to the question about whether the pain was interfering with my daily life with a breezy "no"!  It had all crept up so gradually over months.  Although I read on these forums about people who wake up one morning unable to move, apparently out of the blue. 

[markbenjamin57 in reply to HeronNS]

So true, HeronNS. 

Without getting too psychological (!), I'm sure that for many of us humans, we just don't recognise and / or acknowledge the warning signs of this (or other type of) serious illness until it's too late.

I call this the 'wounded animal' syndrome. I.e. as primitive beings, our instinct is to survive - even against the odds.  So, when 'wounded' (physically or psychologically), we often go in to 'flight' mode and try to defy the external 'threat' to our survival by keeping running...

But, like a wounded animal, even if the brain is urging us on, the body eventually tells us to stop.  And then we have to crawl under a tree and hand ourselves over to destiny.  Maybe, for some of us at least, the source of the problem (= threat to our health) was in the background for some time: but we didn't see it?

Wow, sorry, that was a bit psycho-philosophical, but it was my experience too with PMR: for better or worse!

Thanks for sharing experiences..

MB