Just returned from Dr. having been told back/hip pain is my Sacroliac joint causing the problem.
She was rather off hand about it all and more or less said 'well what can you expect you are getting older' (just turned 70).
Does anyone else suffer from both sacroliac joint pain and pmr?
I do - have been in A&E twice because I couldn't move! The first time some years ago I was admitted - all my back muscles where in spasm and that was what was irritating the sacroiliac joint. Their approach was brilliant - infusions of high dose steroid, NSAID painkillers in the morning and i.v. diazepam as a muscle relaxant at night. It worked a miracle - until the second night when I reacted to the diazepam with a 5 hour long arrythmia attack with a heart rate of 230. They thought it was the high dose pred and stopped it but still gave the diazepam again - then they discovered it was a rare but know adverse effect of the diazepam because it happened again! Luckily I'd already had enough to sort the acute back problem but I was handed over to the Pain Clinic for the slower old-fashioned way of dealing with it. However - not a solution you are likely to meet in the UK, I'm in a very Germanic Italian region.
For me it is an ongoing problem and until Covid it was being managed fairly well here - then the Pain Clinic stopped so I also stopped getting the work on the spasmed back muscles. It all returned a few weeks ago - and my rheumy is dealing with it now, luckily I had an appointent with him the day it had me in A&E again! In the UK I used Bowen therapy - and it managed the low back pain very well provided I had treatments about every 6 months to keep it all balanced. jinasc has found acupuncture helps her now - previously she'd had great relief with Bowen therapy (same practitioner as me). Therapeutic massage aimed at the myofascial pain syndrome trigger points helps - takes time though - and sports massage therapists are good at it - think tennis court-side medical time outs! Mainstream medicine in the UK is hopeless - but I did see an article recently saying that proper management of low back pain MUST be introduced. It needs more than handing out painkillers and telling the patient to "keep moving".
I have a scoliosis as well as the PMR and myofascial pain syndrome - when the PMR is flaring, it makes the rest worse. Interestingly, it has been quite resistent to the usual management this time but I recently started Actemra and after the 3rd jab last week the difference in the back problem is incredible. i could walk more than 50m without pain for the first time for nearly 4 months. I am absolutely convinced now that "difficult" or "relapsing" PMR is closely linked to myofascial pain syndrome and not until that is managed will the overall problem resolve properly. So that will have to be the next crusade ...
Thank you for such a detailed reply.
I am in Germany and suspect the slow and steady approch will be taken here. The physiotherapists here are usually much more knowledgeable than the general Dr. This at least gives me some hope.
You are in a good position to find good therapists - far better than your current doctor with luck!!!! I was in Germany when I discovered the ideal way for me to manage the myofascial pain syndrome. My GP was great but a friend who was a GP gave me the name of a superb orthopaedic specialist and he made such a difference to me. No doubt long retired but there must be others.
My GP there was the first to use needling for me - Quaddeln in German - which has a great effect on the tight muscles and my rheumatologist here now uses it as part of the neural therapy he sets great store by. He also prescribed fango packs and massage therapy which went on for nearly a year until we then returned to the UK. I was nearly "healed" but not quite and got laughed at in the UK. That's why I turned to Bowen therapy.
Where in Germany are you? I lived near Nuernberg for nearly 10 years, all through the 80s. There is another lady in northern Germany on the forum too, Constance.
I live close to Marburg (1 hour north of Frankfurt). Lived in Germany since 86 and love it.
Yes Quaddeln I have heard of.
Going to see the physio tomorrow so will find out more of what they offer.
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