PMR article

[Crusty1949]

Fellow PMR sufferers. The following is a link to an article written by Christine Knippenberg about PMR. I came across it and found it entertaining that sometimes we just have to try and laugh at our illnesses. I hope you’re able to access the article from the link below, if not, you can search online for it by its title “PMR: My Pretty Miserable Reality”

read.bookcreator.com/B0azEx...

[DorsetLady PMRGCAuk volunteer]

Actually it’s already in the FAQs- has been for some time -

healthunlocked.com/pmrgcauk...

[Crusty1949 in reply to DorsetLady]

Should have guess it had already surfaced. Next time I’ll reach out to you before I post something similar. Thanks for the feedback. Enjoy your day .

[DorsetLady PMRGCAuk volunteer in reply to Crusty1949]

No problem… I expect there are lots who haven’t already seen it.

[123-go in reply to Crusty1949]

I had read this some time ago but was pleased to be reminded it exists and read it again for a smile on this dismal, grey day 😁.

[PMRpro Ambassador in reply to Crusty1949]

Doesn't matter at all - loads won't have seen it until now.

[Supertech]

I had not seen it before and enjoyed reading it. Thanks for posting it made me smile.

[Bridge31]

After I bought the book I exchanged several enjoyable email conversations with Christine

[Sungolfer]

hi Crusty! That is a fabulous little read. Thank you - so hits the spot!

[PMRpro Ambassador]

You posting this got me to look at it again - I saw a version for comment long before it was finally published and my feelings then were it was unnecessarily depressing, from the title forward. It described my PMR pred pred - all 5 years of it. Yes, it was funny and VERY on-point but didn't then offer any solutions. That seems to have been addressed - and pretty well.

I now see that had been rectified and her summary at the end is also pretty spot-on but with a load of ideas that are, for most patients, pipe-dreams. Who has had OT input for example? I think actually every doctor managing a PMR or GCA patient with PMR symptoms should be forced to read it as part of training for managing PMR. They do seem to believe that once you are on pred there shouldn't be any problems and they ignore the pred-related problems having doom and gloomed about how dangerous pred is, ignoring the fact that pred is the only option to give us any quality of life. It is 20 years since I had a bath - even now I can't get out without assistance and I suspect I am one of the best managed patients on the forum. Thank goodness for showers!!!

I have realised this week that too many patients are condemned to pain experiences that aren't entirely PMR but often related to PMR and pred. Patients are denied steroid injections that would make so much difference. For the last 5 years the Pain Clinic has done very little to address MY pain issues. The rehab/physio went so far and then stopped. It has been my rheumy who had found the solution - it may be coincidence but a misshapen vertebra was noticed on an x-ray, it led to a precautionary bisphosphonate infusion, and since then, the horrendous back muscle pain on moving from sitting to standing or a slight twist has steadily improved. At a similar time I got my first steroid infiltration for the accompanying sacroiliac pain - coincidence or a synergistic effect? Who knows but the difference has been amazing. And 2 days ago I got 2 more steroid injections from him after discussion of the trochanteric bursitis pain. Today, for the first time I seem to have no pain!! Hope it lasts!! But it is another page at the end of that book ...

[Doraflora in reply to PMRpro]

Fingers crossed for you, PMRpro🤞

[Fatsiajaponica]

I hadn't seen this, thank you for posting. I could relate to some of the content but the author's journey seems very harsh and poorly managed, despite the pred the poor woman seems to never to have got a break from pain.

I did laugh at the bath experience. I mainly shower with the occasional soak, some time prior to my diagnosis I could not get out of the bath, it took me ages, now I know that this was the early signs of muscle weakness and discomfort. Many will be able to relate to some of it so good on her for doing this and donating any proceeds to research.

[Potter100]

Excellent. Not seen before, so worth you posting it.

[Zebedee44]

Brilliant. I hadn’t seen it before and find it highly entertaining and so so accurate. Everybody who knows anybody with PMR should have a copy.

[Doraflora]

thanks for sharing this, Crusty1949. It certainly made me smile on this grey Saturday morning.

There certainly is no blueprint for PMR. Each of us is so different.

Onwards and upwards is what I say.

[random901]

Thanks, Crusty1949. First time I've seen this. Have posted it to family and friends. Think I'll also send to GP surgery and Rheumatology Department. Incidentally, the bath fiasco happened to me. I've not had a bath since ...

[SanG55]

I hadn’t seen this before and shared with family and friends as it mirrored a lot of my experiences, they have all found it useful. Not being able to get out of the bath has haunted me since it happened to me and I will not have a bath ever again, which my youngest daughter is very pleased about as I had to wait for her to get home and help me out! Thanks for the share Crusty1949

[Orangecakes]

Good morning Crusty1949, Thank you so much for sharing this link, entertaining and informative. Take care. 🙂

[Nextoneplease]

Thank you for posting this Crusty 😊

I had read it a couple of years ago but sadly it seems even more relevant now!! Especially the debilitating aspect and the worry about ever being the same (or even a similar) person again 🥹

Don’t think I’ll share with friends and family- it would be so depressing…

And I had the bath problem too! Haven’t had a bath/lovely warm soak for over 10 years x

[Southmead]

This is brilliant, a perfect summation in a humorous way, and incredibly helpful. Thank you so much for sharing..

[Althorp]

well done!

[christi48]

Thank you for sharing this. Totally related! I had not seen it before.

[Hugh_Marc]

this is soo relatable. I actually shared it with my wife who’s a nurse & she found it really helpful.

What family & friends tend to overlook is that because we’re on steroids & they see our health much better, they think we’re ‘cured’.

Truth is we’re far from it. Today is mouth ulcer day. 😩

[PMRpro Ambassador in reply to Hugh_Marc]

Absolutely!!! Are you on MTX? If so - on enough folic acid??

[Hugh_Marc in reply to PMRpro]

No I’m on pred. I take a lot of dairy in my diet. I eat so much natural yoghurt I’ve started to produce my own