Bilateral buttock and upper back of thigh pain

I am having bilateral lower buttock pain and upper back of thigh pain which is much worse when sitting. It is like a band all the way across my lower buttocks. The pain is constant and has a burning aspect to it. It is very specific to these areas and does not radiate down my legs. I am trying to sort out if this is my PMR or something else. Have to doing a slow taper down from 20mg prednisone (in June) and am now at 16.5. The pain has definitely gotten worse in the last month, but I have been moving and doing a lot more activity involving bending and lifting. I am trying to sort out whether this is PMR pain or something else. Does anyone else have this type of pain with their PMR? Or with something else? Appreciate the help.

[pmrkitty]

I have the same for 1 1/2 years, also have the bilateral shoulder and Arm pain, It is PMR. I also have fibromyalgia so sometimes it is hard to tell which is which. Hang in there, hopefully yours won't last long with prednisone. I'm unable to take prednisone so pretty much cold turkey for me. Soft hugs to you.

[Hidden in reply to pmrkitty]

Thank you

[Mary63]

Some questions....

How does this present pain compare with the pain you had pre diagnosis? Were you pain free on 20 mg?

Is it possible you have been doing too much doing this bending and lifting activity you mention? Are you doing a gradual taper, such as one Dorset Lady’s ? Or changing suddenly from one dose to the next?

Answers to these questions may help the more knowledgable among us to help you.

Hope you get some answers soon.

[Hidden in reply to Mary63]

Thanks for the questions. The pain in my buttocks, hips and back of thighs was a symptom for me from the beginning. It was definitely better on 20mg, but the slow taper (1or 1/2 mg/mo) has also recently coincided with an increase in bending and lifting. Don't want to increase the prednisone if I don't have to, but cannot sit for very long at all.

[Mary63 in reply to Hidden]

The gurus will be along later.. probably tomorrow now. It may be you have done too much, or you are on too low a dose or both. Can you slow down a bit to see if you feel better?

[Hidden in reply to Mary63]

Thanks. Slowing down is one of my problems, but I definitely have to do a better job at it--especially when it involves a lot of physical activity. I have always been strong and active, so reminding myself not to do as much is a daily chore.

[MaryA_]

I’ve been having the same exact symptoms as you. If I sit I need to get up quickly because it’s so annoying. It’s been going on for the past 10 months. I don’t seem to get any answers from doctors. A couple of others on this site have reported this also I do have a day here n there it doesn’t seem as intense but then it’s back flaming! Hope it goes away at some point. I’m thinking it the PMR. 😩

[Hidden in reply to MaryA_]

Thank you- sitting is a bear right now.

[MaryA_]

I take a couple of Tylenol sometimes to try n get a better nights sleep, it helps me to deal with it a little better during the day

[Hidden in reply to MaryA_]

I take Tylenol as well, but don't get much relief. Hoping with slowing down, this will get better.

[Marilyn1959]

The bilateral lower buttock and upper thigh pain was the first and worst of my PMR symptoms pre diagnosis. It has also been my dosage indicator throughout my PMR journey, since it is the first area to deteriorate if my dose is too low. I have never been totally free of aching buttocks, upper back thighs even on 15mgs, my starting dose. So definitely the PMR in my case. It is interesting that, although many of us have symptoms in buttocks and thighs first, GPs and google do not consider a PMR diagnosis until there is bilateral pain with restricted movement in the upper body. Since the dull aching is constant whether I do or do not do a heavy gardening, I personally don't think it is particularly related to what I do, but will monitor this now you have flagged it up.

[Hidden in reply to Marilyn1959]

Thank you for the information about it being your dosage indicator. I am afraid it may be one of mine as it started as I titrated from 18 to 17mg of prednisone and now down to 16.5. Am going to hold off on going down any further to see if the pain gets better.

[Mary63]

Reading that it started when you went from 18 to 17, you might consider trying back on 18mg to see ?

OR....Are you sure this pain is the same as pre diagnosis? As with all your activity might you have pulled a muscle? This would make some sense with the fact that pain is worse when sitting. If that is what it is it should ease in a few days.

[Mary63]

Sorry just realised that Tylenol did not help...So unlikely to be pulled muscle. More likely to be overdoing it I fear. One of the hardest things for a naturally active person. Our poor muscles cannot cope too well with too much muscle use., and will often kick off. It will not be for ever. I am nearly three years in to PMR, rocking between 6.5 and 7 mg. I can manage physical things much better now. There is light at the end of the tunnel for you😊

All the best for feeling better soon.

[Jeannie29]

I also had this pain in my buttocks and thigh, but didn’t know I had PMR at the time .My GP gave me a cortisteroid injection,but it didn’t really help.

Got better taking Pred, but still rears it’s head occasionally

I wish you well x

[Rose54]

Hi

I sometimes get something similar cant sit as just uncomfortable so end up going to bed as led down is more comfortable .

I try gentle massage with a spikey Physio ball often sitting my bum check on it does help .

So does Arnica Gel massaged into that area normally worse when settling down after a reduction .

I spend all the evening saying My Bum Hurts .

[PMRpro Ambassador]

Late I'm afraid but I was on holday!

It could well be piriformis syndrome or myofascial pain syndrome and both of them are not uncommon alongside PMR. Higher dose of pred may help over a longer time but steroid or muscle relaxant injections locally or manual mobilisation of the spasmed muscles works well. There are exercises that should relieve the piriformis problem. Google them.

[Hidden in reply to PMRpro]

Thank you for your response. It seems I have a combination of things going on including upper hamstring tendinitis, information in my glutes, and maybe some other processes as well. My rheumatologist who is doing some work to start tests. Appreciate the feedback And knowing that this group is out there.

[PMRpro Ambassador in reply to Hidden]

They are all common alongside and even part of PMR. By the way - you can edit, click on More.

[Hidden in reply to PMRpro]

I meant to say inflammation of my glutes. I will also be looking into getting a combination of massage and acupuncture to see if that helps.