Sacroiliac

[Caradomben]

I have sacroiliac pain and stiffness. Could this be related to PMR

[Marijo1951]

From discussions with other sufferers, I'd say that this type of pain is typical of PMR. I certainly had it very badly before I was diagnosed and started on pred. I'd never had pain in that area before. Now, although I'm fairly pain-free, I still get quite nasty twinges from time to time.

[Portobello]

Yes, it's just happened to me! Physio and exercises are helping but it's just something else to add to the mix of feeling under the weather isn't it? ☹️

[HeronNS]

Yes, I agree with the others. In fact before diagnosis I thought I should get into the line for a hip replacement. All better now, but it took a long time really. After initial dose of pred was lowered the pain I'd had before came back, but physio and generally getting better seems to have cured it, touch wood!

[TooSore]

I struggled earlier on. Trigger point releases, Physical therapy in a warm pool and gentle Massage helped.

[Blearyeyed]

Yes , very common as a side effect of the condition because you are less active , you may not be using your hips or stretching as much as you did , and because the steroids can add to the tightening because its effect on collagen and muscle change.

Using gentle stretching of your back and legs , on a bed in the morning or stretching through the day can help as well as the tips from too sore .

Using a heat patch on your lower back or a sacroiliac belt helps to while doing activity during the day.

[MaryA_]

I’ve been doing the stretches two times a day for the SI joint pain It has helped a lot. Hope it helps you. I asked my doctor to send me PT. Glad I did ! Pain free is awesome! Maryanne 🌻

[Caradomben]

Thank you everyone for your replies it’s reassuring to know others have this pain. I was beginning to think there is something else going on . I have just finished prednisolone this past week after tapering down to 1mg and I have been so sore it’s a struggle .

[PMRpro Ambassador]

It is for me - but it is as much due to myofascial pain syndrome making muscles tight and then spasm on top of the PMR.

I had it so badly I had to be admitted to hospital! The quick solution they tried was extremely successful in dealing with the SI pain but for me caused a very severe atrial fibrillation episode (very unusual I hasten to add and I did already have a/f). I was handed over to the pain management team who have been using manual approaches and needling to keep it at bay - long term but good.

But if you have too much pain - don't rule out the PMR now you are off pred. Even 1mg can keep it under wraps!

[Longtimer in reply to PMRpro]

You have sorted out something that I have been pondering about....muscles tight in lower back which went into a spasm on Friday!!.....very painful....so will do stretches of I dare, if not go back to a PT I saw a couple of years ago I think, although she was wary of touching me and would only do acupunture...helped a little and I slept well....expensive night's sleep!...😏

[HeronNS in reply to Longtimer]

You should have been given some exercises to strengthen the muscles - that shouldn't have harmed any bones or joints if that's what she was worried about. Warmth definitely should relax spasmed muscles. As warm as you can tolerate without risking damage to your skin.

[Longtimer in reply to HeronNS]

PT seem nervous when you mention PMR one refused to see me saying she could make me worse...admired her honesty though....quite rare these days...

[HeronNS in reply to Longtimer]

My physiotherapist had already treated people with PMR and has a good friend who is a rheumatologist. She never gave me the usual kinds of physio exercises, just ones which helped me retain and improve range of motion and after a while added to old exercises I had for my back and shoulders. Mainly she gave me the light therapy I'd been looking to test for PMR, plus dry needling and targeted massage to relax spasmed muscles in my back. Mostly I was given passive treatment at the beginning. And when I asked about some of the more difficult exercises I'd read on line for strengthening the spine and improving bone density she discouraged me, saying it would not be a good idea with the PMR. So it's like the doctors, the physios also need to learn about PMR, osteoporosis and other conditions besides the injury recovery which seems to be their main focus. Before I was diagnosed I'd seen a physiotherapist who'd got me doing repetitive stuff with elastic bands, and those made me much worse. That particular therapist gave up on me and referred me to massage, which was also unhelpful.

[Longtimer in reply to HeronNS]

Yes I agree...if I go to a spa with my sister...massage is out, tried it a few years ago but all are still too firm on the muscles....facials for me (no improvement there though!)...but I find them very relaxing....so worth it to me...

I will have to look further for an experienced PT, most seem to confuse PM R with fibro....

[HeronNS in reply to Longtimer]

They aren't alone. I automatically correct people before they say anything now!

[Susieblu in reply to HeronNS]

I am very interested to read that the elastic band exercises made you worse HeronNS. Exactly my experience. In May I suddenly developed pain in lower back plus sciatica . After months of exercises ,acupuncture, osteopathy & physio one day I was pain free. Unfortunately physio appt that afternoon with elastic bands!

A subsequent X-ray shows I have osteo-arthritis in the lower spine.

I am an 83 year old female with Coeliac disease and over 3 years on steroids for PMR but it did not seem to ring any bells until I had a good talk to my GP about the amount of pain I am in.

Yes the physio main focus was on strengthening muscles but we should be aware of other problems going on in our bodies.

I am now awaiting appointments for pain management clinic and MRI scan.

Perhaps we can’t blame everything on PMR

[HeronNS in reply to Susieblu]

I do blame the problems with the bands on PMR as never trouble before, quite the reverse in fact!

[Susieblu in reply to HeronNS]

I just meant it as a general observation about aches and pains . Was well worth further investigation in my case.

[HeronNS in reply to Susieblu]

Ah. Well I already knew about osteoarthritis, in fact thought PMR was just OA getting worse.

[Longtimer in reply to Susieblu]

Yes, PMRpro often reminds us we can get other things with PMR. I do think some medics jump on the PM R and Pre d bandwagon. At the moment the quandary I am in (what's new ) is lowering to 7.5mg, was doing ok, then the DF set in, now last 2 weeks pain and stiffness..like you lower back mainly...over the years this always happens at .7.5mg....have been to physios...trying paracetamol for pain....not much good....but after all these years no rheumy has answers.....

When people on here lower successfully I wonder what I am doing wrong.....8 years is a long time...other than PMRpro....don't know anyone else on such a high dose this length of time..would be very happy to be at 5mg......

I hope you get some answers....it all helps!...good luck...

[Susieblu in reply to Longtimer]

I have been on 8 mg pred for quite awhile but at the doctor’s request trying to reduce so like you on 7.5mg, not looking forward to going down to 7 as that is when the adrenals have to wake up, isn’t it? I have had PMR 4years.

I am on double strength co-codamol for the back pain . This helps a lot but of course there are side effects. Some people get patches for pain control

I am hoping this would be OK for me.

It looks like I will have to learn to live with the osteoarthritis as a lot of people do.

Thank you for your kind replies .

[Longtimer in reply to Susieblu]

Thanks for that....I just can't tolerate meds of any kind....even one paracetamol makes me loose balance so just take one at night to get some sleep!!!.....

Will decide after Xmas to see another rheumy.....but I fear will have to raise the dose quite a lot to tolerate the pain and stiffness for now...we plod on together.......

[PMRpro Ambassador in reply to Longtimer]

I know of a few - including one gentleman of 80+-ish who finally got off pred after 11 years.

[Longtimer in reply to PMRpro]

That`s reassuring.....meaning there are probably many that don`t come on our forum...

Met my sister this morning who said an ex work college contacted her and in conversation said she had polymyalgia....and had been off steroids three times in 6 years because the rheumies said she had been on too long....!....but is soo ill when she lowers for them that she ends up back on steroids every time....makes me want to scream!....I still blame my first rheumy that said I had to be off in 2 years......yes, I was, but not for long!!….well, I have to blame someone!

[PMRpro Ambassador in reply to Longtimer]

And at a guess she's really been on more pred in that time than she would have been with a sensible taper and stopping at the "right" dose. You have to look at the overall picture - and I bet they'd sing a different tune if it were them.

[Longtimer in reply to PMRpro]

Absolutely, this poor lady is like my late MIL.....all doctors are gods....just like you and I think!...😉

[Hidden in reply to Longtimer]

I have done these kinds of stretches for years after back surgery 20yrs ago. I initially started them in a warm swimming pool session. I try and do most of them everyday on the bed which is quite firm. That way I don't need to get off the floor.

youtu.be/caf-DfGwAgQ(Not working as expected?)

[Longtimer in reply to Hidden]

Thank you for that....yes easier not doing them on the floor...can't get up again!....

[jinasc in reply to PMRpro]

Acupuncture sorted my lower back pain, sciatica earlier this year as physio did nothing - I could not sit for long or lie down etc and walking was horrific.

I remembered the article you wrote on Mysofascial Syndrome, many moons ago re-read it and thought Acupuncture - 6 weeks later all pain gone and still not come back.

[Constance13 in reply to jinasc]

How strange! I have had 3 acupuncture attempts (paid for by my national insurance over here (Germany for those who don't know me). 3 x 10 sessions. They didn't work at all. Not quite twins after all!!😂

[David-42]

Looking at the replies so far this will be the odd one out. On the rare occasions when I am constipated I do get the most severe SIJ pain which is instantly relieved by the obvious action. Just a thought. Best wishes.

[Hidden in reply to David-42]

No I can relate.

[Nagswoman]

I had so much pain in the 6 years before PMR and GCA diagnosis 3.5 years ago. When I got put on steroids all pain went. Even though I didn't have pain 2 years ago, a CT scan for something else identified sacroiliitis and colitis. Since earlier this year the pain keeps coming back when I reach 2.5mg preds and right now it is horrendous. This time I don't want to raise the preds again. PT doesn't really work as they are hands off. A good osteopath helped but I cannot afford that treatment as I am now unemployed and do not intend to work. Too painful. Sorry for the long reply but yes, I think they are related.

[PMRpro Ambassador in reply to Nagswoman]

Does 3mg do the job? If so - go back to it. Below 5mg the dose is so low it really doesn't matter if you add 1/2mg.

[Nagswoman]

I have sacroiliitis and its friend colitis too.