Cautiously optimistic: For a month before my... - PMRGCAuk

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Cautiously optimistic

Annodomini profile image
12 Replies

For a month before my diagnosis, over 4 years ago, I'd had a low backache which I was sure was muscular. It has stayed with me all this time and now, quite suddenly, it has gone! One of my GPs said it couldn't be due to the PMR because it wasn't in the shoulders or pelvic girdle. But I thought she was wrong. Until recently I couldn't stand around the kitchen without having to go and sit down for a while and I fought shy of walking any distance. But at the weekend I was able to go for a walk in the garden at an NT property (without my stick which I'd forgotten to put in the car!) with lots of ups and downs, with no backache whatsoever. I think the inflammation is on the wane - hope I'm right!

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Annodomini profile image
Annodomini
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12 Replies
PMRpro profile image
PMRproAmbassador

I do wish doctors would see past how they envisage shoulder and hip girdle pain in PMR. Not everyone has them, other pains are part of PMR and to say otherwise is rather stupid (I chose that word carefully by the way).

Grrrrrrrrrrrrrr!!!

On the other hand - good-oh! Long may the lack of backache last!

Celtic profile image
CelticPMRGCAuk volunteer

Anno, woopee! And long may that last. Now don't go running the marathons that has just been suggested on another thread, will you......not just yet anyway!!

Annodomini profile image
Annodomini in reply to Celtic

Marathon? With osteoporosis in one hip and an implant in the other? Ha!

Runrig01 profile image
Runrig01

Fingers crossed for you. In the last month I've had pain in the lower back on left side and cramping of left thigh. I only get it when I'm walking but wondered if it was my pmr or something else. I do hope your pain free episode continues. Take care x

Celtic profile image
CelticPMRGCAuk volunteer in reply to Runrig01

runrig, how is the stress fracture in your foot? I remember you had to walk around in a boot for some time and wondered whether perhaps that has caused pressure on the lower left back and thigh resulting in pain in those areas?

Runrig01 profile image
Runrig01 in reply to Celtic

Hi Celtic, fractured healed just fine. Been out of the boot 2 months now, ironically had less pain walking around in that. Carrying a handbag or shoulder bag seems to aggravate the pains in lower bag and thigh. It definately feels muscular, the reason I'm unsure if it's pmr related as normally my pmr pains are bilateral and this is one sided. I'll get there. Hope you have been enjoying your time as grandma. Take care xx

Celtic profile image
CelticPMRGCAuk volunteer in reply to Runrig01

runrig, quite a few people seem to be getting odd little niggles sorted with Bowen therapy - perhaps worth a try.

Runrig01 profile image
Runrig01 in reply to Celtic

Good idea Celtic, I was considering a massage which I used to have done regularly, but think I will seek out a Bowen practitioner. Thanks as usual X

Celtic profile image
CelticPMRGCAuk volunteer in reply to Runrig01

Yes, massage is good too, runrig. A few sessions of that, together with ultrasound and heat treatment, worked brilliantly for me when muscles around my shoulder blade areas went into spasm when I reached the very low steroid doses. I was lucky to come across a physio at my local community centre who understood PMR and knew to stick to gentle massage, avoiding the usual manual techniques of physiotherapy, so as not to stir up the inflammation. Good luck with whatever option you decide on.xx

Annodomini profile image
Annodomini

Thanks Runrig. I'm pleased to say that I even managed to do some housework without ill effects! Oh! No more excuses!

Lainie44 profile image
Lainie44

You are so right about the low back pain. Mine I would call the tailbone, the very end of the spine. Never had any shoulder girdle discomfort. I do have upper and lower extremity pain and weakness! Could not even hold a paperback book in my hands at the beginning of this illness. The docs can't get it thru their heads that this is NOT a cookie cutter illness. We all have different pains, symptoms, a different "length of stay" of it. We also respond well/ill to different medications. My PCP said I did not have PMR because I had no symptoms in my shoulders and could raise my arms above my head without pain. So frustrating!!! Why can't they read Dr. Kate Gilbert's book, "Polymyalgia Rheumatica and Giant Cell Arteritis"? They would learn so much!

leofred profile image
leofred

My experience (diagnosed July 2014) has been that PMR triggers the pain your GP talks about but also causes strong inflammatory pain anywhere there might be another cause of inflammation. For example, before diagnosis, my pain was "typical" PMR plus my bad ankle was worse than ever and the bottoms of my feet were very tender. As I've been weaning over the last 6 months, I can tell if I'm weaning too fast not just from mild to moderate flares in my mid to upper back but also in my ankle and the bottoms of my feet.

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