'The PMR stoop!'

[tangocharlie]

I was with some other lovely PMR warriors on Saturday going to the AGM in London - which was really useful BTW and triggered lots of positive ideas for me. As we were all trying to clamber into a taxi, I noticed that we all walked the same way, a kind of stiff penguin-like waddle, and made 'oof' type noises bending to get in the taxi. Someone, I think it was Rugger, said it was the 'PMR stoop'. I'd never heard that expression, and it made me laugh, but ever since then I've noticed I do stoop, because if I try to straighten up back and shoulders it's more painful and stiff. Maybe doctors should use this as part of a PMR diagnosis!

[DorsetLady PMRGCAuk volunteer]

Aka “the penguin shuffle” .

Not a lot of tango-ing going on then!

[Hidden]

I can imagine it....🤣🤣🤣

[Hidden]

I went to see an obnoxious Shoulder Specialist a couple of years ago & he asked if l was sure l had PMR? because l didn’t walk like l did!

I pointed out l was on 20mg Methotrexate & 7.5mg Pred so hopefully it was doing something!

But l too remember waddling like a penguin when l was up at 20mg Pred.

[HeronNS]

I'm surprised that all you lovely people on treatment would still be walking like penguins. However, the winter before I was diagnosed, so I was told later by her mother, the young woman who lived next door observed me painfully hauling myself up my front steps and remarked to her mother that Mrs _____ had really bad arthritis.

[tangocharlie in reply to HeronNS]

Maybe the penguin thing was just me, I shouldn't insult my travelling companions! but I think we all had 'the stoop'! Steroids really help me, but don't take away all the stiffness.

[HeronNS in reply to tangocharlie]

🐧🐧🐧

Actually I distinctly remember one doctor visit when my doctor called me in, rather than my being sent in by the receptionist, and I thought at the time it was so she could observe my walk!

[Blearyeyed in reply to HeronNS]

That is true actually , the good Doctors and Specialists I have seen over the years all come to the door , or stand outside the Consulting Room in the corridor , and I have noticed they do seem to watch me walk.

It wasn't until the addition of GCA/ PMR and deterioration in my Hypermobility with the Ehlers Danlos that I gave things away in my walk , even when I was heavily pregnant.

I think it was all the years of ballet training , taught to me by my Sadist Choreographer Mother , and the occasional jab in the ribs I got if I let my shoulders drop that always made me conscious to force myself to walk properly , even though it was flipping painful.

Now I have the full on Polywobbles and the Penguin Stoop is only prevented by my new back brace when I'm outside. Saying that , I'm still finding it hard not to look like Charlie Chaplin while my other joints get used to all my new braces.

Dress like a Ninja , walk like a Thunderbird!!😂😂😂😂

[Purple-Owl in reply to Blearyeyed]

Good word Polywobbles! There's a lot of it about!

[PMRpro Ambassador]

I don't have the penguin waddle - providing I'm on enough pred! I do find I get a bit stiff when sitting for a long time and stoop then until I have straightened myself up. But it is nowhere near as bad as when I had PMR without pred!

I have noticed that some people don't have it - but a majority probably do. Some people have it far worse than others, really penguin waddle! And as Bee says, the good doctors/therapists come to the door and watch.

[Blearyeyed in reply to PMRpro]

Yes ,,I have to say my waddle has more to do with my joint instability than the GCA/ PMR Pain . The 'stoop' is from the Fatigue of the muscles in the back and tightening of the spine because we compensate for our shoulders and hips in activities and crouch up to protect them according to the Physio .

[PMRpro Ambassador in reply to Blearyeyed]

I found Pilates made a massive difference - and that was with PMR and no pred.

[Koalajane]

I have the penguin waddle but it is usually only first thing in the morning before I “get going” and also Shen walking after sitting down for too long

[CT-5012]

Every time I notice I’m stooping I hear one of my great aunties saying there is only one thing worse than a woman who stoops and that is a tall woman who stoops. 😫

[TooSore]

Tight piriformis muscles, I think

[Longtimer]

I notice the stoop more when tired.....

How was the meeting?...…..what did DR Muchtar (spelling?) have to say for himself.....he has the fastest reduction of pred I think there is...and stands by it too!

[tangocharlie in reply to Longtimer]

I thought he was logical, encouraging and entertaining. He focused on GCA as that is his expertise. He outlined the problems people have getting a diagnosis and the correct treatment, and said he was doing his bit, in his geographical area (Norfolk) , to change things. He acknowledged the 50 weeks guideline for steroids doesn't work for everyone.

[Longtimer in reply to tangocharlie]

Well that's a first from him!....I found him very smiley, polte, but dogmatic in his views....Will never forget his words, if you get pain when lowering with my regime then you don't have PMR, just over a year...I have kept it to remind myself of it....

I filled in a vasculitis form for research on my first appointment with him, but didn't hear anymore....

Thanks for that...

[tangocharlie in reply to tangocharlie]

There's such a lack of consistency around, it makes me angry. I've had so many problems with Doctors being wrong I've learned to question everything.

[PMRpro Ambassador in reply to tangocharlie]

It probably works for about 1 in 5, if he's lucky. Unless they are on Acttemra. He needs to listen to his patients better ...

[Rugger in reply to PMRpro]

He gave figures of 78% of his GCA patients coming off pred at his 100 week 'deadline'. Within the next 50 weeks, 5 patients relapsed, but the remainder stayed in remission. We ran out of time to ask many questions, such as how long the 22% of patients had to stay on pred.

His presentation concentrated on the GCA service he has set up, along the lines of a 'Fast Track' service. He didn't mention PMR, as it wasn't the subject of his talk.

The whole day was very interesting, but there's never enough time for questions!

[PMRpro Ambassador in reply to Rugger]

Two years is a very different matter - even in PMR the figure is 34% (+ 1 or 2) and it is fairly generally the case that GCA is easier to get off pred than PMR. But he must have been really lucky with his sample of patients.

[Bridge31]

My new nickname is Pingu 😏😏

[Noosat]

I notice that my walk is a little unstable, could be called a penguin walk, I constantly have to tell myself, "straighten up and walk tall," The morning leg stiffness rarely disappears completely.

[bunnymom in reply to Noosat]

I feel that my hips aren't very stable but my balance is good. My posture improved when my neck hump went down.

[Noosat in reply to bunnymom]

I believe exercise is an important part of treatment. I was concentrating on just walking and continually increasing steps per day until September 2 when I started at a gym. I have been to 3h our long chair yoga classes, which I found, surprisingly to me, quite strenuous. Most of it is sitting but some standing. I am also just working out with weights etc. Going there a total of 6 days a week. By now I can notice a difference for the better. Have not given up walking. I just got home from an hour (didn't walk all that time) at the river with Lily dog. Even though I start "going" down after lunch, I will make myself go to gym for a forty minute workout.

[tangocharlie in reply to Noosat]

I agree, but it's important not to overdo it. When I first started on steroids the miraculous difference they made inspired me to go swimming, charging up and down the lanes like the good old days. I think it's permanently damaged my shoulders though. I now do gentle swimming, walking, pilates and yoga.

[Noosat in reply to tangocharlie]

Not me ! 40 mg each day for 3 days got me barely walking. Then to 20mg and have tapered to 4mg. I monitor myself closely, and do not attribute every ache and discomfit to PMR. I have an aged body that cannot do as it did when I was younger. This, I have to accept, but try to make the most of what I have left.