You look so well !

[Ullswater]

I'm doing my best, keeping my mouth zipped not to respond to my Rheumatologist . I enjoyed hearing about her recent trip to India meeting up with folk she had trained with 25 years ago , because she genuinely is a lovely warm personality...but I am truly fed up of the ' you look so well ' comments when I feel totally crap ! Surely in her job , she knows better ! I'm tempted to encourage my grandchildten to become Rheumatologists...£100,000+ a year to humour their patients, tell their own stories ! It must be a very boring job , in reality .

[PMRpro Ambassador]

I suspect a lot of them believe it is encouraging to the patients - rather than the slap in the face many of us feel it is when we are feeling totally rubbish! As if we didn't get enough from non-medical people who can't believe we can't do something because of the condition and as a result imply we are lying.

The really good ones don't find it boring as it really is a fascinating area of study - the poor ones maybe do when they discover they can't cure their patients, their job is to make the best of a poor job of managing the illness and its effects. And that wasn't what they signed up to - they wanted to be knights in shining armour riding to the rescue.

[Strelitzia in reply to PMRpro]

My rheumatologist is a temporal arteritis specialist, and when I first met him he dismissed pmr as more of an “inconvenience”. So while I was supposed to be lying quietly while he did an ultra sound, I gave him all the details of how undiagnosed pmr had changed my life and how the resulting prednisone had destroyed my hair and weakened my bladder. I think I made my point….. nicely! Positive thoughts!!

[PMRpro Ambassador in reply to Strelitzia]

Hope he develops it and discovers just how "inconvenient" it can be, Especially since a high proportion of us diagnosed with "only" PMR probably have LVV simmering away under the radar because no-one looks. He also needs to read Prof Mackie's article that MrsNails has linked to today. I developed first symptoms at still 51, wasn't diagnosed until nearly 57 and still have it nearly 20 years on. Pred has allowed me a life - would have been a bit hellish without.

[Sharitone in reply to PMRpro]

I really think that people with difficult-to-treat PMR should be routinely investigated for LVV. Particularly the ones with longstanding DF.

[PMRpro Ambassador in reply to Sharitone]

I have had a PET-CT but nothing showed up - I may not have been low enough on pred though.

[Sharitone in reply to PMRpro]

Pity there isn't another method of diagnosing

[PMRpro Ambassador in reply to Sharitone]

Indeed - but it isn't the only elusive diagnosis.

[Merryfield]

speak up

[SheffieldJane]

I felt a bit fraudulent in my wheelchair looking like a plump, rosy cheeked, Cupie doll during airport assistance, surrounded as I was, by very frail, elderly Chinese gentlemen in their chairs in Hong Kong. I really, really needed it though, no doubt about that. I gained a lot of sobering insight into the trials people face who have permanent mobility problems. My helper was having a jolly laugh with my husband whilst I disappeared.

[Kt1943 in reply to SheffieldJane]

As a permanent wheelchair user I have many stories about traveling in the wheelchair and sympathize about your comment that you “disappeared” while the helper chatted with your husband. It has been my experience that when I am in my manual chair, people talk to the person with me rather than to me. The classic is that every time we rolled up to the security barrier at the airport, the employee at the barrier would say to my husband, “Can she walk?” His standard response was “No, but she CAN talk!!”

[SheffieldJane in reply to Kt1943]

Good for him!

I got a few little smiles from toddlers in their pushchairs though. It does open your eyes. X

[Gimme]

One of the things that I have learned during this journey is the myriad of ways that people can unintentionally invalidate people who have chronic illnesses and/or disabilities. It sucks when you feel like crap and all you want is to be heard. I would think that I have always been fairly empathic, but it has made me watch my own listening skills more in my dealings with people who are upset or in difficulty with their health.

[SheffieldJane in reply to Gimme]

Me too!

[Rugger]

I am very, very fortunate in my Rheumatologist, but if I had one like yours I would be looking for another! I would explain to her exactly why, which hopefully would contribute to her 'Continuing Professional Development'! 😏

My heart goes out to you - I would have been angry and heartbroken in equal measure. 💐

[SheffieldJane in reply to Rugger]

We have been spoiled it seems Rugger. X

[Rugger in reply to SheffieldJane]

Yes indeed, but it shouldn't be so.

Hope you are soaking up that sunshine - it's been icy here - brrrrr!

[SheffieldJane in reply to Rugger]

It’s so nice. X