Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases nighttime butt/hip pain - what kind of doc?

My orthopaedic doctor was critical in helping me getting a diagnosis in the arthropathies. For years he kept saying that I was not the typical patient since I eventually presented with both knee and hip problems by my mid 20s. He sent me to a rheumy when I really did not have a lot of symptoms of AS yet, and that rheumy pretty much dismissed me. That left my orthopod scratching his head because he just KNEW there was something rheumatological going on.

Years later, he and my eye doctor both recommended I see a rheumatologist again. I went to a second rheumy, but, by this time, I had a much stronger clinical picture of AS (morning back pain, multiple cases of mild iritis), and, in fact, I was diagnosed with AS right away this time.

Through it all, my orthopod stuck right by me, in fact, a few times even calling me his "most interesting case." I wasn't sure if I was supposed to say thanks.

So, personally, I would see a really great orthopod for nighttime butt/hip pain!!

winelover - re: facet joints, dunno! I think it is possible since the L5/S1 disc is severely decompressed, and once that is going on the facets can rub against each other (OA in the back) which can cause pain, but not always.... it's a big question mark. During the course of epidural shots my doc did do one set of facet injections to test this theory. Didn't help.

Brenda I'm still considering asking my pain doc about the nerve ablation. At present I'm enrolled in a clinical trial for a biologic for low back pain (not an anti-TNF) and I will get my first dose of med in a few weeks. So I'm conflicted as to whether to seek add'l help from docs now or wait till the trial is over in about 6 months. 5 in 13 subjects will NOT get the study medication so it's risky....

Catwoman, thanks! LOL @ your doc calling you "interesting." My physiatrist once told me "You're a mess!" But he said it in a nice way. Then there was my ENT who told me my brain scan was normal.... "for a girl"! Sounds like your ortho was a good guy on the job. Even my psychiatrist who prescribes my ADD meds, told me at our FIRST visit together that she thinks I have a rheumatological/immunological systemic problem!

Rheumys have been a dead end for me so I think I am going to find an ortho. I work with a woman who has had hip problems since birth - at 52 she has had four major hip surgeries! - and she's also a pediatrician who took care of my partner's kids for many years Anyway, I asked her for suggestions on orthos. Whoever she sends me to is bound to be good, and caring. But who knows how long it'll take to get the appointment. Meantime I may dip into that leftover vicodin from after I had a salivary gland biopsy 3 years ago!

One thing to try is lidoderm patches. When my SI joints are really hurting, and I can't sleep on my side or back, I try the patches, and they usually help a lot. I know others have had relief with them also.
I went around and around with ortho doctors before going to a rheumatologist. And I wouldn't have gone to the rheumatologist either, except my gastoenterologist sent me. Right up to the day of the appointment, I thought about cancelling because I thought it would be another waste of time. Turned out totally different--I was diagnosed and started treatment.
My point is to not give up entirely on rheumatologists--a good one is hard to find for sure, but they can really help. My ortho doctors kept falling back on "overuse injuries" as the cause of my pain. The fact that one time it was my foot, another time the hip, another time the elbow--didn't seem to matter to them. If you go to a rheumatologist and tell them you're having trouble sleeping through the night because of pain and stiffness, that you're waking up stiff and sore, and concentrate on the symptoms rather than MRI results, maybe you'll get further.
I also did the epidural, facet injections, SI joint injections, etc. None worked, or only maybe worked for a short time. I finally went to RF ablation which helped a lot but only for 6 weeks. Then progressed to cryoablation which helped the most. I would certainly approach the pain doc about ablating the SI joints. Until I had that done, I couldn't sleep in any position for more than an hour at a time.
Sorry this is so long....

I tried the patches - no go. Then again I tried them during the day and they didn't agree with my clothes. Maybe they'd work during the night - they are laying around and it's worth trying!

Lisa, your orthos were onto something, though - overuse injuries are mostly tendonitis. Tendonitis is a subset of enthesitis....

My symptoms overall are definitely different from when I saw my rheumy last year. You're right, I need to focus on pointing out what I feel are the "key" symptoms. I went in there feeling like she saw my prior labs etc. and diagnosed me with fibro before she even saw me!! Unfortunately she's in a practice widely considered to be the best in the city, and they won't let people switch between docs in the practice. So all the good rheumys in town are now off-limits to me

I doubt my pain doc would do SI ablation just yet ... there's no "official" indicator that my SI joints hurt (and heck, maybe they DON'T!) I'm sure I'll be seeing her again, though, and she is definitely open to possibilities - i.e. using injections for both diagnosis and treatment.

I don't mind your reply being long Everything is helpful, even if it doesn't dictate a clear direction - it's good to hear about others' experiences. Makes me feel not so alone - whether I wind up with a spondy dx or not. So many people work so hard, for so long, to have their pain recognized and dealt with!