Co-morbidity issues

[Bahba]

As if the unknowns about PMR weren't enough ! My recent flare happened as I was actually doing physical therapy for some lower back pain related to disc / nerve problems. And the PT was quite helpful, so the condition seemed to be resolving.

But one morning my hips and low back were suddenly so very sore, I assumed for a week that I must have overdone the PT exercises. I eventually sought pain relief at an Urgent Care clinic, but nothing seemed to help.

It slowly dawned on me that my PMR from 9 years ago might have recurred. Now on prednisolone from Primary Care and rheum appointment soon. I still wonder if resuming the PT is a good idea right now.

So I'd like to see comments from members who concomitantly struggle with other diagnoses, particularly ones which may share some symptoms with PMR.

Questions: How have you managed this conundrum? Do your specialist caregivers acknowledge the other diagnosis and the need for other types of treatment?

[PMRpro Ambassador]

My rheumy does - but he is exceptional!

I have severe low back problems which flared up, along with a PMR flare, a few months after my husband died. It was my rheumy who sorted it then and I was eventually referred for physio as my walking had deteriorated over time. He put me on Actemra for the PMR so now we have a much clearer picture of what is what although I have always known to a great extent where a current problem lay. This last one really had a lot to do with Covid stopping the set-up I had going when it started and the resultant deterioration.

The difficulty was communicating that to the doctors responsible for treating it - I have a triumvirate of Pain Clinic, Rehab and Rheumatology. In addition I am under Cardiology - and those meds make the Pain Clinic doctor very risk averse to procedures that would make a big difference. The rheumatologist will do them - and offered a steroid injection for the sacroiliac joint problem which probably causes most of the other problems and is "fed" by the PMR. That has removed one source of pain and highlighted the muscle tightness problems that previously had felt as it it was all one horrible mess. The Pain Clinic tentatively did some work on that last week which has taken it all another step forwards.

Now I know how to get what I need - things should improve. I was not a happy bunny as the Pain Clinic doctor seemed to only be able to say no to the three options I had identified that helped for pain relief. The rheumy's action has improved the pain so much I barely need painkillers. Should have gone to him sooner ...

[S4ndy]

I have spinal and other joint issues together with PMR. I have learnt to differentiate between PMR pain and pain relating to my other conditions.

I have a collection of prescribed drugs to use for flare ups. I am on a maintenance dose of 5mg of Prednisolone for PMR. If I get a flare up I first take paracetamol, if this doesn't help I then take diclofenac anti-inflammatory 25mg. If this doesn't work I try 50mg. If this doesn't work I add in an extra 100mg of Tapentadol to my usual 500mg a day dose.

If none of this works only then do I consider extra prednisolone. I then double my dose for 1 day and if this works I then I just do 7 days and then go back to 5mg. Luckily I haven't had a PMR flare for a while so my 5mg dose is the level I need.

All of this has been approved by Rheumy, Orthopedic and Neuro Surgeons who have also helped me to work out a preventative drug regime for when I am doing extra stuff. I know I am extremely lucky with my medical team who have listened and helped me. It's been a long struggle but I am now pretty stable pain wise.

[PMRpro Ambassador in reply to S4ndy]

That is something that should be available to any of us with protracted back problems alongside PMR. They do become interlinked at some point and when they get too bad, it can be hell to sort out.

You have what here is called "luck in unluck" - a bad situation, but a good set of doctors.

[arvine in reply to PMRpro]

Hello PMRpro, Ive read a lot of your posts, and along with PMR reading you have a lot if back problems. Myself and my rheumy dont believe I still have pmr after over 7 yrs, re symptons and bloodwork, so Im now tapering to 5 mgs again, but I have so many back issues, Exrays, ultrasounfs and MRI s show so many, spinal stenosis, degenerative, 3 buldging discs, osto in both hips, and Jan 1,2024, tore gluteus muscle and hamstring, in May 2023 went to pain clinic, 2nd week of injections(8 needles) some kind of med , last needle hit nerve! 2 days after extreme pain front thigh, like burning knife pain, MRI then in May showed nerve root entrapment, at thst time in June went for Spinal decompression therapy treatments , everyday first 2 weeks, got relief then another 10 treatments twice a week , so settled down until this past Dec, started on maintenance treatments again until I tore muscles then couldnt go go, so I am interested in what your back problems are and how being treated at pain clinic, currently having JUST a consultation with ortho surgeon, Im 76?and dont really want surgery, but would be happy to be without so much pain that limits my mobility and living life in general, long story I know, just so frustrated , emotionally, physically exhausted , thank youo

[PMRpro Ambassador in reply to arvine]

I have myofascial pain syndrome, a scoliosis that adds to it, greater trochanteric pain syndrome and some arthrosis in the joints in my lower back. All I get is injections that acts as a muscle relaxant - a technique called needling, commonly available in the Germanic regions of Europe - and now and again steroid injections. I'm about to have extracorporeal shock wave therapy for the trochanteric bursitis. I also do aquafit classes which help a lot.

But knowing what I have doesn't really help you - they are all approaches that deal with specific problems but all together achieve a more general improvement. Your doctors have to look what your problems are and what is possible to have done. I don't have anything that surgery would help as far as I know, but if my rheumy felt that was an option, I would seriously consider it. I am a bit of a wimp and only too happy to moderate what I do to minimise the pain.

[arvine in reply to PMRpro]

I am going for warm water therapeutic therapy in interin, they only have once a week a moment, not enough, I am hesitant to go for injections since that drvhit a nerve, think responsible for all nerve problem , femoral nerve entrapment since, maybhave ruptured disc and leaked onto nerve, bit god would sure like sime relief thank you

[Thelmarina in reply to arvine]

Reading your list I am appalled and full of sympathy. That’s all I can offer but it is heart-felt ❤️

[arvine in reply to Thelmarina]

Oh thank you