So ready for answers!

[Lanakay]

After a trip to the rheumatologist and X-rays I am told that I have degenerative disc disease and bilater apical pleural thickening. Then I was sent to see a physiatrist and was sent for an MRI. Now I have had an epidural for my neck. I am no longer getting headaches. My lower back and thighs and buttocks have been really painful. I have an appointment Thursday and I’m really hoping he can help with that too. They think my PMR is gone and now I have degenerative disc disease. I am so ready for some answers and to feel better.

[SheffieldJane]

Fingers crossed for you Lanakay, 🙏

[Mary63]

Glad your headaches are better. Good luck with the rest....thinking of you.

[PMRpro Ambassador]

Could the back/buttock/thigh pain be piriformis-related?

[Lanakay in reply to PMRpro]

I don’t know. I’m glad I have an appointment tomorrow. I am still taking the gabapentin and am down to 3 mg prednisone. After 3 years of feeling pretty bad I am hoping to get some answers now.

[PMRpro Ambassador in reply to Lanakay]

Do tell us if you do!

[Lanakay in reply to PMRpro]

After X-rays and MRIs the rheumatologist and the physiatrist have agreed that I had PMR in the beginning but now have degenerative disc disease. That is why the prednisone stopped helping the pain even when the rheumatologist raised my dose to 15mg.

[PMRpro Ambassador in reply to Lanakay]

So is it now entirely degenerative disc disease or is there still some PMR?

[Lanakay in reply to PMRpro]

Both doctors are telling me it is degenerative disc diseases. I had an appointment with the physiatrist yesterday and am set up for an MRI on my lower back on Tuesday. Then we will see what that shows. My headaches and neck and shoulder pain are gone since the cervical epidural last week. I am sure hoping this is the answer. I have been living with pain for a long time. It’s hard to keep my spirits up when every move I make hurts.

[PMRpro Ambassador in reply to Lanakay]

I had one private orthopod say that was what I have. I couldn't stand or walk for more than 10-15 mins without excruciating low back pain and a whiplash injury had made it worse. But, luckily in a way, I seized up completely one morning, couldn't even get to the bathroom. My husband had to go for bloods and I went with him - 800mg ibuprofen relieved it enough to be able to shuffle to the lift and the car! The ED were very sympathetic - and the orthopods on duty recognised it to be muscle spasm causing sacroiliitis. I was admitted - and given an infusion of high dose steroids plus an NSAID as pain killer in the morning and at night i.v. diazepam as a muscle relaxant. Next morning I felt SOOOO much better, Unfortunately the second dose of i.v. diazepam caused atrial fibrillation, a known but rare adverse effect. They thought it was the high dose steroids and stopped them but it happened the next night. I was much better but it wasn't good enough for them so I was sent to the pain clinic where they use injections and manual mobilisation of myofascial pain syndrome trigger points to reduce the muscle spasm. That keeps me fairly good - if it didn't they would try the epidural approach. I also manage to get physio appointments for manual myofascial release - but we always run out of the allocation! Between the two though it is perfectly livable with. If annoying!!!

[Lanakay in reply to PMRpro]

It is such a huge relief to sleep without wakin with a sick headache radiating from the left side of my neck. I can also turn my head and move my shoulders for the first time in a very long time. I’m down to 2mg prednisone for the first time since the PMR started nearly 3 years ago when I started on 20mg. I’m going to follow through with this. I have not gone on a holiday for a long time. Last time I did I spent most of it in the hotel room. Everything hurt and it caused me to get so stressed out that I felt awful and didn’t want to ruin everyone else’s fun. I am praying to be better.

[Yellowbluebell]

Hope things go ok.YBB