Spondyloarthritis / Spondylitis Forums - Spondylitis Association of America
Spondylitis Association of America Home Page Learn About Spondyloarthritis / Ankylosing Spondylitis About Us - Our Work More Ways To Connect With Others / Support Groups And More Become a Member of SAA We Are A Nonprofit - Donate Today Shop for Products
Page 4 of 4 < 1 2 3 4
Topic Options
#278099 - 06/05/17 05:44 PM Re: New here! and a Question [Re: Nicole_B]
Nicole_B Offline
Registered Visitor

Registered: 04/14/17
Posts: 48
Loc: New England, USA
Just saw the physiatrist/pain management doc, and it was possibly one of the least helpful and most condescending doctors appointments I've had. My husband, who works in the medical field, accompanied me, and was kind of shocked by his 'bedside' manner. As in, I wasn't even all that surprised by it, although I was annoyed/sad/mad coming away, but my husband seemed astounded.

The doc had said to come back if six weeks of PT didn't help. I told him I was pretty much the same, though the diclofenac helped (I even told him I have tried taking it consistently/as often as possible, then going without, to test this). He looked at my pain diagram and said it looked exactly the same. But he ended up just reiterating that I have degenerating discs in my lower back (which I actually think is not what the MRI report said... it said "mildly bulging disc" -- not desiccated, not herniated, and only mildly bulging) which causes inflammation, that the NSAID helps with this, and that we need to strengthen the area to support it and improve flexibility. He said he could give me cortisone shots if I am uncomfortable enough, but I kind of want to hold out on that as long as I can. Other than that he didn't have anything to offer me. He asked if I was still doing PT, I said the PT said I had completed the course and that if I wasn't improved she thought there was probably either more going on or we were targeting the wrong areas. He said I should keep doing exercises at home. He asked if I had tried chiropractic -- I have told him previously and reiterated that I have been seeing a chiropractor regularly for two and a half going on three years. He said I should see them twice or up to three times a month. And maybe consider trying acupuncture.

My husband asked about a disc in the lower back causing pain in my upper back and ribs, and the doc (sounding very annoyed at the question) said that if one thing is off in the spine the muscles all over try to compensate. I understand that reasoning, but it still seems improbable that a lower back mild disc issue would cause upper back pain first, then rib pain, then low back pain. And all that my husband and I have been able to find has indicated that discs tend to cause only local inflammation, not widespread inflammation. So why would I have inflammatory pain in my upper back and ribs? And it really has never seemed muscular -- it aches on the spine itself, and when I press on that area it aches on the spine itself. I guess if the muscles are all tight they would pull on the spine and make that area unhappy? But my muscles have loosened up considerably in the area -- my chiro over the last year and my PT over the last two months have noticed marked improvement. And honestly, we need to strengthen the area and improve flexibility? Does he want a demonstration?

By the the time he asked if I had any more questions, I was mostly just ready to get out of there as quickly as possible. He did at least change the diclofenac formulation for me so I can take it twice a day instead of three times -- I like attempting to sleep longer than 8 hours when I can so I don't like having to wake up/stay up late for that. And if I'm going to continue the pain management route with or without an answer for what's going on, I'm leaning towards finding a different doctor for that. His tone and manner was awful, not necessarily what he said exactly. Maybe he was just having a bad day, but his manner previously hasn't exactly been great anyway.

So... I guess I'm on to a second opinion from a different rheumatologist in a different network. Hopefully they're at least less dismissive than I feel like I've gotten so far. The only ones who have felt helpful, even if they haven't had answers, have been my PCP and PT. Even if they don't know what's wrong having someone say "yeah, seems weird, let's see if we can figure it out" would be nice.


Edited by Nicole_B (06/05/17 05:49 PM)
_________________________
Mid-20's. Undiagnosed upper and low back/SI pain (along with hips & ribs consistently, and neck, knees, heel/bottom of foot, ankles/achilles, and wrists periodically). Diclofenac 75mg 2x/day and Prilosec 40mg 1x/day. PCOS recently diagnosed.

Top
#278118 - 06/07/17 09:59 AM Re: New here! and a Question [Re: Nicole_B]
subdural Offline
Registered Visitor

Registered: 06/03/16
Posts: 26
Originally Posted By: Nicole_B
Subdural, I feel like I have so many questions and yet don't know what to ask. This whole process is confusing, and I keep doubting my own experiences.

As a side note, I just saw the visit notes from the rheumy and the ICD code she gave was "arthralgia of multiple sites." But what does she think would cause chronic polyarthralgia if there is not something underlying going on? Part of what bugs me is that she didn't even think it seemed to warrant further assessment - she said just return to pain doc/physiatrist and PT and mentioned nothing about following up with her or anyone else. (Even the PT said just last week that at this point, if I'm not better - even just somewhat improved without full improvement - then we are missing something. She seemed (understandably) hesitant to disagree with the doc but said we need to know more - that either we are targeting the wrong areas or there's something underlying.)

Sorry. Didn't mean to go off on a rant.


It's funny, I was seeing a PT for a few weeks for low back pain before I was diagnosed. She was frustrated all the time. I thought I had a mechanical back problem (I have a physically-intense job) and I never consulted with a doctor about it.. I just emailed my primary doctor to let her known I had chronic back pain and if she could send down a script to PT. I never had imaging done of my back or other joints because I never went to the doctor with my joint problems prior. She was frustrated because I was in pain, I had little to no ROM and had problems with the exercises. One was the chest opening exercise where you lean against a corner into your arms for 20 seconds. I would start having problems breathing after 10 or so seconds (why? well because of AS but we didn't know it at the time!). So, she really pushed me to go and get images done. And then voila, my SIs are partially fused and my hips have advanced deterioration, etc., list goes on.

Maybe the PT knows a rheumatologist you can see that will further investigate? Depending on your insurance, you can keep your current person because they are treating you for something.. arthritis.. but just go for a second opinion. I went for 2 second opinions and settled on the 3rd rheumatologist. They all said AS but I wanted to be sure before starting on the heavy meds. I hate going to the doctors and I hate bigpharma, so I kind of went overboard, but the point is you have to do what is right FOR YOU. It is your health.. you are paying these providers.

The rheumatologist most likely put that in the ICD in order for you to receive some treatment. It is definitely an on the fence diagnosis - s/he is not confident in giving you a systemic autoimmune diagnosis, maybe. That's why some fresh eyes would be nice!

Top
Page 4 of 4 < 1 2 3 4


Moderator:  ElinAslanyan