Shooting pains in hips and legs

[Stiff-as-a-board]

Hi again,

Quick recap- I’ve had GCA and PMR for past 3 years. On methotrexate and pred. Was trying to taper. Got stuck at 3mg gone back up to 6 but don’t think it’s enough. Generally stiff shoulders and hips in the morning and evening, but bearable. Through the night is a different story. Almost as soon as I lie down the pains in my hips shooting down my thigh bones to just below my knee caps is really quite painful and disturbing my sleep. It really feels like my bones are sore not the joint

Is this normal for PMR?

I’m due a rheumatologist appointment but probably won’t be till January, should have been November and I notice that the nurse helpline has been closed!

I’m going bed shopping this week and I’m going to get a GP appointment but would just like some reassurance that my night pains are indeed PMR.

Any thoughts?

thanks again, this forum is invaluable

J

[DorsetLady PMRGCAuk volunteer]

hi,

Not sure they are totally , the mornings do sound very PMR-ish - and usual advice for flare is to add 5mg to current doses- as described in this -

healthunlocked.com/pmrgcauk...

Think the night-times ones are different -could be Greater trochanteric pain syndrome (GTPS), Piriformis syndrome or many other things - so does need checking out.

[Stiff-as-a-board in reply to DorsetLady]

Thank you. I will make an appointment now (and up my pred 😩)

[DorsetLady PMRGCAuk volunteer in reply to Stiff-as-a-board]

Pred is only upped for short period - but will give an answer hopefully as to whether a flare.. and if it is, will sort it out.

[PMRpro Ambassador]

"Is this normal for PMR?"

Not PMR per se - no. But it could be due to add-ons as we tend to call them.

However - since it seems to be fairly clearly positional. it could be that the nerves into your legs are being pinched - either where they exit the spine or nearby and it could be a disc problem or muscular.

Given the price of a new bed, without knowing what it is, I'm not sure I'd be shelling out for that unless it is a really old bed! Have you tried a good soft mattress topper to protect your hips from pressure?

[Stiff-as-a-board in reply to PMRpro]

I have got a topper but the bed is fairly old and I feel it’s worth investigating. I have just made dr appointment so fingers crossed.

Thank you for all your suggestions.

[PMRpro Ambassador in reply to Stiff-as-a-board]

I think I mean don't go spending a small fortune without having good reason!!! I was thinking I might need a new mattress - it IS a new mattress but a different one - but after a few days driving to the UK and 2 nights in my daughter's bed, the back pain was so much better! Then 2 months at the other daughter with fewer problems, I came home and trialled my bed again. No problems!! Was it the driving, the 2 nights on the campervan bed, her bed - something had obviously shifted and no longer hurt!!!!

[Foodie24]

Hi,

I suffer with shooting pains similar to those that you describe, I have been diagnosed with severe spinal stenosis which is caused by an abnormal narrowing of the spinal canal or neural foramen that results in pressure on the spinal cord or nerve roots. Symptoms may include pain, numbness, or weakness in the arms or legs.

[marionofnorwich]

I would be inclined to see a good physio. PMR and steroids both affect m muscles and posture

[Broseley]

Hi, I also suffer this, have done for years, on and off. What I feel really helps is a soft mattress with a memory foam topper. These days you can buy mattresses online or from Dreams with a 6 month return period. This gives you plenty of time to try it out. We had a sprung base on our bed and I found replacing that with a solid base and a soft mattress really helped.

I am waiting for an appointment with Musculoskeletal which will hopefully help too. I think my main issue is sitting. If you're sitting all evening in front of the telly you are aggravating the trapped nerves. Avoid crossing your legs and even your feet. Use a footstool or pouffe. Shift position regularly and get up and move about every half an hour.

Good luck in finding a solution!

[Stiff-as-a-board in reply to Broseley]

Thank you. Really helpful

[Greenlife]

That sounds exactly what my PMR felt like when I first had it. I was stiff in the hips and thighs during the day (though bearable), but come the night time the shooting pains in my thighs right down to my ankles were excruciating. At that stage I was x-rayed to check that I did not have fractures in my thigh bones, and only after those were clear did the GP suggest PMR. As we all know, the Pred worked like a miracle and I am now down to 5.5/5 daily and aiming to reduce really slowly. I’ve had a couple of flares on the way, but keep telling myself not to be in too much of a hurry to get to zero.