CAN BARELY WALK WITH LOW BACK, GROIN, HIP PAIN DOWN TO OUTSIDE OF RIGHT KNEE.

[Missus835]

What has Missus835 done to her low back??? No idea. The 60 mg of Pred does not touch this pain. Starts in groin pull, goes around to low right back and hip, down outside of my right leg to outside of knee. Almost like a herniated disc (for which I've had 2 operations in the past). I can barely walk and have to lift my leg by hand, up to a curb. Sitting for a period of time is so, so painful and I have to sit for 8 hrs whilst working, but manage to stand up (if I can get up) throughout the day. I am beyond frustrated at this point.

Due to last weeks pressure in the head, pain in the jaw and somewhat in the temporal artery, with some eye involvement, I'm being investigated for GCA, thus the 60 mg. of Pred. However, this does not touch the pressure in the head, which presses on jaws and especially on my ears. Left ear goes deaf. I think it's either extreme allergy related, but not sinus or nasal or jaw related. The pressure is not there in the mornings which leads me to believe when I'm laying down through the night, something dissipates and then as the morning progresses, so does this terrible pressure. Almost like I would need tubes in my ears. The pressure is not like I've felt before.

Oh yes, I have to say I think the Prednisone has helped the jaw pain, back of neck pain and head pain (thank goodness). Also very loud tinitus in the same deaf ear.

On a great note, Ophthamologist saw no significant change in vision, except for a little change in the cataracts. No sign of nerve damage or glaucoma.

A combo of Acetaminophen and Ibuprofen does help lower back, but we all know what the Ibuprofen does to the stomach. It's better if I take with food.

I do not think (not for sure) that the lower back is related at all to PMR, except maybe for weakness in the muscles or ligaments. The Rheumatologist of course will not see me until she gets all the results of the GCA tests and even then it's doubtful. GP is a a quack-a-doo which I will not waste words on right now.

Any ideas my friends?

[Grammy80]

I hate to introduce something else, but have you had your hip x-rayed? Hip issues often start with groin pain...and it is definitely suspicious that you 'have to lift your leg'. That may be something to at least rule out~!💞

[Missus835 in reply to Grammy80]

Yes indeed need an xray or MRI but trying to see my Rheumatologist is like going thru St. Peter's Gates. GP useless. Plus unless its ordered on an urgent basis here in Nova Scotia it could take 6 months to a year.

[Grammy80 in reply to Missus835]

Oh, dear! I'm in the states but my son, wife and grands live in Nova Scotia so I understand completely!! Having recently been hospitalized in Indiana.....the US system is falling apart as well. I wish you the best!!💞

[JuneWalker in reply to Missus835]

It is so wrong for you not to be able to see your Rheumatologist quickly. Mine is available anytime I need. What if you go to the ER, would they do an X-ray/MRI there? you may have a wait in the ER but could be helpful for your issues.

[Missus835 in reply to JuneWalker]

Going to GP this aft

[PMRpro Ambassador]

When that happens to me it is due to greater trochanteric syndrome and piriformis syndrome all mixed up. The sciatic nerve gets pinched as it passes through the piriformis muscle and that causes the pain down the outside of the leg. It is a specific bit of myofascial pain syndrome - and it is more common alongside PMR. It is caused by the same inflammatory substances except they aren't systemic but located in discrete points in the muscles which form trigger points that can be felt as hard knots in the muscle. They irritate the rest of the muscle and any nearby nerves causing referred pain.

[KASHMIRI1 in reply to PMRpro]

Good morning may l ask please how you treat it when the trochanteric and piriformis problem kicks of ? I am not having much fun with the physio exercises l have been given. I sometimes think they make it worse

[PMRpro Ambassador in reply to KASHMIRI1]

What physio are you doing? Are there piriformis stretches? It doesn't help immediately - all longer term solutions unfortunately.

When the low back pain is really bad, I take a flooding dose of 800mg ibuprofen and sit upright and well supported with a hot water bottle across the low back area that is so painful. That too can take hours, occasionally a few days, to get really good results. I have ended up in the ED twice, the first time I was admitted but had a bad reaction to the i.v. diazepam that is part of the standard protocol (which works wonderfully!). The second time a different doctor just gave painkillers (tramadol I think) which did next to nothing, My rheumy saw me later the same day - at least they had got me there! - and he used an infusion of a high dose NSAID plus something called neural therapy and by the time he'd done that I was able to move reasonably well. But it has been a long journey since.

[Missus835 in reply to PMRpro]

So far, no physio (my Blue Cross does cover 80% though should I decide to go that route) and this morning can just barely stand, nevermind walk. Also has been raining all night and is still. Piriformis stretches have worked in years gone by. I'm going to try with my heating bag on my lower back while working and course an IB flood with food is on the agenda. This started out a couple of months ago with the groin pulling and I just let it go and not sure what I did it lately that has caused the rest of it to become enflamed. Turned the wrong way, lifted something the wrong way or just looked sideways at something (LOL). Thank you so much for your responses, which will all be tried as I value your opinion above any doctor I have encountered so far (with the exception of the Neurologist, who is a great guy.) I could not reach the Rheumie a week ago, so I e-mailed his Assistant, who forwarded my e-mail to him and he forwarded an e-mail to the Rheumie. Still have not heard from her though and I suspect she's waiting for GCA results, but does not follow up on test results. Spoke with her nursing station, who said I did the right thing going to ER with the GCA symptons - between visits. One visit in May 2022 and one 10-minute phone appointment in December last. She has jokes.

[KASHMIRI1 in reply to PMRpro]

Thank you for your kind reply and the information. I am sorry that things have been so bad for you. My physio doesn't want me to do stretching exercises for some reason, l have strengthening exercises which started to work, then my husband had a TIA in November and l had to do all the driving and go back to our business which involved standing which set it of big time and it has been a problem ever since. My rheumy isn't keen on !e taking Ibuprofen with the steroids,

[KASHMIRI1 in reply to KASHMIRI1]

Sorry message went to quickly l take two Codomol higher strength in the morning which sometimes calms it down enough to survive on paracetamol in the afternoon. This week it is very bad, l think die to a bit too much walking. I think l will see my doctor as l haven't had a f2f at all about this issue. that started last spring, just sent off to the physio over a phone call. I don't she even knows which bit of me is the problem. Have you tried patches for the pain?

[PMRpro Ambassador in reply to KASHMIRI1]

The rehab rheumatologist gave me lignocaine patches for the back pain - they worked for some things, not for others, If it were me, I would want to know WHY not stretches - and there is a big difference between physios in their approach so maybe that is something to think about. But you can't exercise out of muscle pain if the muscles are tight and spasmed, that must be tackled first. My rheumy uses NSAIDs with pred but only if I also use stomach protection such as a PPI or famotidine.

[KASHMIRI1 in reply to PMRpro]

Thank you for the information

[cycli in reply to PMRpro]

great response. It's possible to release these hard spots by pressure. I find the offending area on the muscle and track that muscleto its end. Then apply firm finger pressure on the painful spot and its sister site at the end of the muscle for 20 seconds or so. after that time very quickly release the pressure. Repeat until cleared. Works like acupuncture. It will hurt but does work.

[Missus835 in reply to cycli]

Will try. Thanks

[PMRpro Ambassador in reply to cycli]

My physio does that - but for longer than 20 secs I think! Or maybe it just FEELS that way!

[cycli in reply to PMRpro]

feels that way. Longer isn't better.

[Missus835]

Thanks Pro. I'm thinking the same thing but wasn't sure of the muscle technology. Wasn't sure if PMR was also included in the equation.

[Merryfield]

Does sound like some sciatica. I took lots of ibuprofen the first time, when not so bad, then the second time every three hourd when on a van tour across Turkey, and the next several times, including when I couldn’t walk, I had epidurals. They pretty much work.

[MiniSpec]

I can relate with the tinnitus. With me it started the day after I started taking Prednisolone, and is still just as loud 12 years later. The Pred dosage doesn't seem to make a difference either, as I started on 15mgs, had two bouts of GCA which caused me to go up to 60mgs, and 50mgs respectively, and am now down on 3mgs. I'm hoping that if I ever get off Pred the tinnitus will slowly fade away, but who knows, it might not. Only time will tell.

As for hip pain, since Christmas I've also started suffering every night with something similar. I now have to get up at around 4-6am every morning to take painkillers due to the pain on the outside of both hips. I suspect it's tronchanteric bursitis rather than anything else, but sometimes my sacroiliac joints play up as well, so it could be referred pain from my back.

Either way, it sounds like we're both in a similar situation, although from the sound of things you have it all much worse than I do. If ever you do manage to get any form of definitive diagnosis, please post it up on here, as I'd love to find out what's possibly causing the onset of my new pain.

Oh, regarding painkillers, I can't take ibuprofen in any shape or form, so have to rely on paracetomol with codeine to knock the edge off the pain, and even then it doesn't entirely get rid of it, but I find it does help me to get some much needed sleep.

Best of luck, and I hope things do improve for you fairly quickly, as it's no fun at all having to put up with chronic pain.

[Seekingasolution in reply to MiniSpec]

I can’t lie directly on my side either or within 20 minutes I start to feel uncomfortable but if I do another quarter turn so I’m almost face down eg on my right side and with a pillow under my left knee or vice versa I’m absolutely fine ! Hope that might help.

[MiniSpec in reply to Seekingasolution]

You're describing the recovery position, or something like it. I normally sleep in the recovery position, either on my left side, or my right. I go to bed at midnight (I'm retired) and usually sleep for 4hrs or thereabouts, but then I'm woken either by my bladder, or by the pain in whichever hip I'm lying on, so I turn over, but then I've got pain in both hips. So I have to get up to go to the loo, and then I've found that if I go straight back to bed again, the pain is there and waiting for me. If instead, I go downstairs and take a couple of painkillers, then sit in my arm chair for around 20 mins or so, the pain has diminished and I can go back to bed again and sleep till I wake.

This morning is a case in point. I slept till nearly 6am this morning, but then had to get up for the loo, and painkillers, so while I was waiting for them to kick in, I sat here at the computer and read the latest posts from the forum.

Upon reading your post I answered it, then went back up to bed. That was at 7am, and I've just woken up now at 11am, so I must have needed my sleep. The interesting thing is though, that my hips weren't hurting when I woke up again, and aren't hurting now. So I can only assume that the painkillers I took earlier are still working.

[Seekingasolution in reply to MiniSpec]

well let’s hope you get another 8+ hours tonight. Funny how you can have better days and when you try and track what you did differently it doesn’t make much sense. I found on holiday once when I took some antihistamines the pain went away for 48 hrs but I know you can’t take antihistamines all the time but I’ve tried it since and it hasn’t had the same result !

[PMRpro Ambassador in reply to Seekingasolution]

You CAN take antihistamines regularly - I did for a long time.

[Seekingasolution in reply to PMRpro]

that’s good to know - especially as some ensure I get a great nights sleep ! Useful as a catch up . I thought some increased your risk of dementia but maybe that’s just a certain type.

[PMRpro Ambassador in reply to Seekingasolution]

I've no doubt MOST things could be shown to increase the risk of dementia if you looked hard enough. I stopped looking!

[Seekingasolution in reply to PMRpro]

😂

[cycli in reply to PMRpro]

I can't remember if I did or didn't

[Missus835 in reply to MiniSpec]

Thank you. I wouldn't say worse...maybe just different involvement and I will keep you posted

[Jeanfkelly]

I have the same symptoms as you - only on my left side.After a herniated disc last year, a 'new' range of pain (sciatic) started up.....

Hip/groin/buttock/down left side of ankle from knee.

After GP/X-Rays/Pain specialist, I was offered an MRI.

Spinal Stenosis in L3&4.

Now awaiting a decision re surgery.

It's worth pusuing with your health professional.

Take care & good wishes.

[Missus835]

Aw, I'm sorry you're going through this pain. On top of everything else, it's completely discouraging. Yes a call toa medical professional would be good - if only I could get through the plethora of red tape here in Nova Scotia. Maybe another trip to the ER? They make it seem like they are the top of the food chain, when actually us tax payers ARE the food chain. Not to get off on that rabbit trail. Thanks for your response. I know what I must do, it's doing it that makes things so much more difficult. Where do you live?

[Pixix]

I was diagnosed with trochateric bursitis on left side & sciatica on right side by Dr last Friday, but having hip x-Ray tomorrow to check for osteoarthritis which I have in other areas! Coukd be one…or both! I can’t take ibuprofen due to gastro issues, so cannot comment on their help! Right hand side..sciatic nerve…pain from hip down side of leg to toes, very acute sometimes, nagging the rest of time, bad at night…plus groin pain, but that could be something else! Bursitis pain does not travel so far, is more localised, & worse if I lift a weight like a bag if shopping. But I’m not a Dr, yours could be something quite different!! Good luck!

[par600 in reply to Pixix]

Hi,

I just had a steroid injection for acute pain from a trochanteric bursitis. It is 2 weeks now and sharp pain has diminished. I am left with residual pain surrounding hip area. I am attributing it to overuse of muscles. Also mentally trying to retrain my gait pattern. Life is not simple. I wish good luck to all you other sufferers.

[Pixix in reply to par600]

Thanks, I had a depo medrone injection last Friday, but I have a problem with other joints, so it wasn’t targeted directly into the site of the bursitis. I’m glad you’re free of the sharp pain, enjoy it! My gait is hampered by the sciatica on the other site, bad arthritis in my toes & my knees turn outwards! At the moment, I’m trying to limp on both sides, LOL! And keep my toes off the ground!

[Missus835 in reply to par600]

At this point, I have not much of a gate. :0

[Darkchocolate1]

perhaps it is bursitis? It often comes along withPMR. I have horrible hip and knee pain right now and prednisone does not help nor does any other pain pill. I will see rheumatologist Feb 8 for his evaluation and hopefully steroid injection in hip and shoulder. The injection in my shoulder did help previously. Seems to be the only treatment I have heard of for bursitis. I hope you get help soon for your pain.

[Missus835 in reply to Darkchocolate1]

Yes thank you so much. I'm attempting to get an appointment with Rheumie as we speak.

[HeartMe]

I also have PMR and experienced your same symptoms. Went to my rheumatologist and we both agreed did not seem like it was PMR related. He thought it was my bursitis and I got a steriodinjection, which did nothing. The short story is I had a pinched nerve in my L4 lumbar region. By the time this was diagnosed, I could only manage to be flat on my back without excruciating pain. I ended up in the ER, hospital, in-patient rehab, home care rehab and now out-patient rehab. It's taken me 5 months to get to this point. Go ASAP to the proper doctor that can do CT scan/MRIs before you get to this level. There are medications to help with the nerve pain and also relaxing the muscles that are affecting the nerve pain. My Rheumatologist was useless, by the way. Many prescription pain meds do not work for nerve pain per my docs. Wishing you good luck in getting this under control fast.

[Missus835 in reply to HeartMe]

Thanks for this. GP has sent for CT Scan and regular x-ray is booked. So sorry for what you're going through. I never anticipated this disc pain would crop up again but here we are. All the best my friend.