is this a flare up
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have been on pred for 9 months started at 15 now down to 8, for the last couple of months about 5pm when cooking supper have awful pain in my hip buttock area, told rheumy about it, he did not really comment then on saturday out of the blue pain so bad and this time travelled down to my foot, could not stand on it at all, rested until monday morning no better phoned rheumy, he was completely booked up phoned hip specialist as had have this same thing happen before being diagnosed with PMG, he was puzzled as had not been feeling well had stopped taking statins as felt my joints hurting a lot, he x rayed hips they were fine, I told him I had the same thing happen 2 years before when in Florida had injection and it was goe within 5 hours, this time he really did not know but said it obviously could be PMG, he organised me to have steroid injection immediately as I was in a wheel chair as the pain was unberievable, but if I went in a crouch position and tried to walk the pain was gone but the moment I stood upright it was terrible, after the injection he told me it would take a week or so to reach its peak, it is slightly better today, I am so lucky as I belong to Bupa so get seen quickly, really dont know how I would cope under normal circumstances. Phoned Rheumy sec to ask him if I should upp my dose, she phoned back and said no but to wait a week or so and see how things go, do you think this was a flare?
0 likes, 12 replies
EileenH vanessa66630
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I have similar problems, it is due to myofascial pain syndrome which leads to the formation of trigger points on either side of the spine: in the shoulders, between the bra strap and the neck, at about rib level and inthe lower back where the dimples are on your bum (if you have them). They form hard knots of muscle fibres which are concentrations of cytokines, the same substances that cause PMR. If they get bad they can cause the muscles to go into spasm and pinch nerves, just like a "slipped" disc is said to. If it is in the lower back the pain can radiate into the leg and if the sciatic nerve is the one affected then the pain can go right down to the knee and foot.
I ended up in hospital - having woken about 4am and gone to the loo (as you do) I got back into bed and then went to adjust my position only to realise I couldn't move! I don't need to tell you what it was like! A maximum dose of ibuprofen got me to the stage where I could inch my way to the car and David took me to A&E! Straight onto a trolley - I couldn't sit. I got infusions of pain killers, steroids and valium - a standard procedure here for the problem but reacted rather badly to the iv valium but by then the initial problem had gone and they handed me over to the pain clinic for the slower version to complete the job.
She used cortisone shots and manual mobilisation of the trigger points and I had some physio. Its pretty much OK but I have to be careful - some movements will give me a reminder, especially cleaning floors! (So that's alright then ;-) )
I have had Bowen therapy since and that also helps a lot - it is what I used in the UK because I've had the problem all the time I've had PMR and it often is found alongside it. I know a few people with similar problems who have also used Bowen very successfully. Do look and see if you can find a local practitioner - you have to pay but it has no side effects and really does help.
vanessa66630 EileenH
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EileenH vanessa66630
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You can use paracetamol and cocodamol with pred. I also found that a hot water bottle across the painfula rea really helped too.
Do try and see if you can find a Bowen practitioner locally.
vanessa66630 EileenH
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EileenH vanessa66630
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vanessa66630 EileenH
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EileenH vanessa66630
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I don't think there is necessarily a link with PMR as such - just aging! I haven't time to look it up properly just now as I have to meet a plane!
MrsO-UK_Surrey vanessa66630
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Certainly, I found that having a serious spinal problem together with PMR did muddy the waters, sometimes not knowing which pain was which. In the early days before the PMR was diagnosed, and I was bedbound for months with the pain, I had one scary experience when I got out of bed to go to the loo and my one leg just buckled without any feeling in it whatsoever. I have also had several bouts of sciatica.
I apologise for going into some depth, but I thought perhaps something in my experience might help you. Did you have an MRI yesterday? I remember that my spinal canal was reported on in the notes following my MRI. Have you tried upping your steroid dose for a few days to see if your pain resolves?
vanessa66630 MrsO-UK_Surrey
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EileenH MrsO-UK_Surrey
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Thank goodness for copy and paste - quicker than checking I'd spelt it right so I hope you got it right in the first place! And people complain about polywotsit and giant thingumybob...
MrsO-UK_Surrey EileenH
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Oh ye of little faith Eileen!
Yes, it's true that spondylolisthesis can lead to spinal stenosis but I wasn't diagnosed with the latter when I had the MRI years ago. There's possibly something going on in that area now though, as the numbness in my toes is worsening, especially overnight. Yes, it does seem that I like gathering illnesses with unpronouncable names - remember when both Sjogren's and Mickulitz's syndromes were suggested by my rheumy alongside PMR/GCA a few years ago?! Even my GP said he needed to look that one up!
MrsO-UK_Surrey vanessa66630
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