What about PMR and persistent hip pain, sciatica?

[Abbeynan82]

I have had PMR for 3 years. My late husband fell Ill 2 years ago, whereupon I had to stop being cared for and start being the carer . Immediately developed tired hips and sciatica. Even now, a year later, there is no improvement. Is there a relationship between all this hip pain and PMR?

[PMRpro Ambassador]

It may well be trochanteric bursitis - now known as greater trochanteric pain syndrome. That can also be part of PMR, together with myofascial pain syndrome which one Aus expert considers is part of the underlying pathology of PMR.

I have it, it is the start of every flare of PMR for me. I have had it since February this time. Just upping oral pred didn't help, I wasn't really offered a steroid jab and the hoped for physio didn't materialise as a concrete offer. The rehab doc wanted to use his favourite toy - extracorporeal shock wave therapy. It is the same technolgy as lithotripsy but adapted for soft tissue. It does work well but this time various factors have led to long delays in starting and continuing the sessions so it has taken ages. Since I started tocilizumab/Actemra it has been improving slowly - to me a sign it is part of the PMR.

Unfortunately, the usual advice for stretches, icing and rest doesn't seem to succeed very well when you have PMR - it feeds the bursitis. By far the best option I have tried has been local steroid jabs - local in a area the pain is worst, not into the joint.

[piglette]

Have you talked to your doctor about it? Sciatica is horrible. There are exercises for it. I found a physio was the only thing that helped apart from a TENS machine.

[Pegasu]

This is my problem. Terrible crippling pain like sciatica in buttocks and legs. I am having physio which does help a bit but since she has been working on it I'm getting tingling and numbness right down one leg and my ankles and feet are swollen. GP has increased the pred to 15mg but I am wondering if going any higher will do the trick. I've had this terrible pain for 6 months now. It's stopped me living my life, I am housebound. Never thought this would happen to me, I've always been so active.

[PMRpro Ambassador in reply to Pegasu]

It seems to have been a constant theme this year - several of us have had similar longterm low back/sciatic problems. Mine always starts with an acute low back spasm and then it turns into a real flare. Not housebound - though it was a near thing for a while. The one thing I can do that absolutely doesn't hurt is drive!

[Abbeynan82 in reply to Pegasu]

Me too. All the above! Eyes not stable enough to drive. I’m on 8 mg after 3 years, fail at 7 or 6, and think I should be higher but cannot face another 10 lbs.

[Abbeynan82 in reply to Pegasu]

Thank you. My answer to Pegasu is also for you. Totally debilitated and struggling in own home. Eyes not fit to drive, and cannot stand upright for pain. 8mg is holding general aching but wake at 4 am, sleep half the day. Totally missing summer as feel too wobbly even to take Walker outside. I was ok until husband died because there was someone else in house. I’m asking for a care assessment. (Uk)

[PMRpro Ambassador in reply to Abbeynan82]

It really sounds as if you are on too low a dose - have you tried more?

[Pegasu in reply to Abbeynan82]

Ditto, can't stand up for pain. Had to buy a kitchen table where I can sit to do veggies for dinner. I am a carer to a grandchild with SEN. I can sit and lie down without pain but cannot stand or walk without huge pain. Just had a chat to GP who said he is reluctant to put my dosage of pred up to more than 15mg without the agreement of a rheumatologist. Can't get appointment with rheumy so he advised me to try to go private just for a consultation and he would discuss my case with that person. I fall asleep all over the place. Just tried to watch a live webinar and woke up at the end totally missing it. Luckily it was recorded and I can see it at another time, but so frustrating. I asked him about other pain relief and he side stepped that issue as I was given cocodamol by another GP and that doesn't work.

[PMRpro Ambassador in reply to Pegasu]

Show him the 2015 Recommendations - starting dose is the lowest effective dose in the range 12.5 to 25mg/day. Most GPs don't have a problem using 20mg.

rheumatology.org/Portals/0/...

[Pegasu in reply to PMRpro]

Thanks but I can't show him anything, as he only does phone calls and there is no email address. He will ring me again in two weeks but in the meantime I have to try to find myself a private rheumy.

[PMRpro Ambassador in reply to Pegasu]

If you have a phone call from him you can quote the title of the paper to him - he can get it from the medical literature database they use.

[Pegasu in reply to PMRpro]

I was expecting more from him this morning. Sometimes you just lose the will to discuss anything with these people who are afraid to do anything that might help someone.

[Nextoneplease in reply to Pegasu]

Oh Pegasu, I do know how you feel. It’s such an effort when you’re already under the weather, isn’t it? Often worth trying if you get the chance…..but it would be so good to get some positive feedback from a GP without having to work so hard!

All the best xx

[Pixix]

I’ve had sciatic & hip trouble for 9 months. But hip x-Ray revealed that the muscles attached to my bones in that region have ossified…turned into bone instead of muscle & that I have OA in another area, too.I last had x-rays in 2019 & there is a marked change. Mine seems unconnected to PMR…I also have a benign tumour on my spine in a place where it’s too risky to operate. Waiting to see a rheumy who is also a sports injury specialist & to quite my doctor likes ‘weird cases’ (said with humour!) The pain is appalling, also waiting for pain clinic appointment & second neurologist appointment. I’d go privately, but three consultants & tests could eat up too much money. I’m now used to little sleep, & constant pain! (Had to reduce painkillers to see if they were causing bad hand & arm tremor!) I tell you all this to show it could be a bucketload of different things, may be unconnected to PMR & pred, but may be directly connected!! Oh, increase in pred…doctor tried me on 10mg, did not help at all…now reducing slowly, currently on 7mg, hip & back trouble just as bad…but also have two new diagnoses…hypermobility & spondylitis! Sometimes the ‘buses’ come along all together!!

[PMRpro Ambassador in reply to Pixix]

Hasn't Dad2Cue reported something similar?

[Pixix in reply to PMRpro]

Thanks yes he’s replied below! S x

[Abbeynan82 in reply to Pixix]

Thank you. An increase in Pred has improved general aching but not the lower back and glute pain. Eyes don’t focus well. No change there.

[Pixix in reply to Abbeynan82]

Hope you get sorted and treatment, would think you should get X-rays taken and blood tests to see what is going on!! Good luck!

[oscarandchloe]

Sorry to add to the possibilities -hip pain from before PMR and it got steadily worse in right hip, thought it was piriformis/sacro iliac, went to pain clinic, no help. X-ray showed osteo-arthritis in both hips and just had total hip replacement, the left hip booked in for November. Thank Heaven for an insurance policy which we have never used -up until now! In the UK I would have to wait for at least 2 years I'd used the NHS , by the time the first hip was done I couldn't walk...

[Abbeynan82 in reply to oscarandchloe]

Many thanks for your replies. I suspect that mine is the proximal myopathy that comes with steroid use. I am housebound and getting worse. I try to keep moving, but self reliance very dodgy.

[Abbeynan82]

Very interesting! Sounds like you will need the surgery. My brother and sister have had similar. I think I am in the same league. I have had GBS and weak hips ever since, so there is some question. Spinal X-rays seem innocent!

[Pixix]

Interesting, I haven’t found anybody else who has heard of muscle ossification and most web sites only talk about it in patients who have had replacement joints which I haven’t had! I had a tumor on my spine before I had PMR though. Spondylitis is new to me and I haven’t had time to read all about it yet nor the new hyper mobility! Too many diseases now, I also have fibromyalgia and essential, inflammatory arthritis and osteoarthritis. Just so greedy you and I…not leaving much for other folk!!

[discoballs]

I’m going through a very painful time at the moment. I’m in pain almost all over. My hips are really giving me grief. This has been going on for about 8 days now.

I had an emergency appointment with my GP service today and am off for more blood tests tomorrow. I forgot what the GP said she was checking but it is something other than my usual blood tests.

I’m on Codeine now. My pred dose is 7mg.

Awful. Pain all over…

[PMRpro Ambassador in reply to discoballs]

Are the hips worst or is it mainly hips? Greater trochanteric pain syndrome is worth considering - won't show in bloods though

[discoballs in reply to PMRpro]

Thank you. It’s mainly hips but everything else too. The 👩‍⚕️ gp I saw today is quite new to my practice so she could well be looking at something else. Thank you so much for this.

[PMRpro Ambassador in reply to discoballs]

I have GTPS - after a while my whole back is involved if not sorted out and it feels as if everything hurts!!

[discoballs]

I will let you know how I get on !

[cycli]

Try my exercise regime. No. 3 should help. totally passive and designed to relieve pressure on that area. healthunlocked.com/pmrgcauk...