Chronic Pain and Frustration: Seeking Answers

@scuppersant thank you so much, I gained the stomach issues after months of pain. My dad does have ulcerative colitis so it’s not far off that I could have something like that or another autoimmune disease.

Definitely seek another opinion!! I had super similar issues and my rheumatologist also swept all of my symptoms under the rug, that is until I mentioned my gastrointestinal problems and he realized I actually have inflammatory bowel disease. I had to go through the process of getting yet another referral to a better rheumatologist and another one to a gastroenterologist, but I’m doing way better with some actual treatment, keep fighting until someone listens! You’re not wrong about your body, you know yourself better than any doctor does, if something feels wrong about your body listen to your gut feeling!! (I also got a referral to a pain management specialist and highly recommend that route as well, definitely a step up from most rheumatologists in terms of compassion and treatment planning!)

@YaYa631908 thank you!

@BirdNerd thank you for the input! I was probably going to seek out of network care because I am very limited (to 1 rheumatologist). This sounds like a better option. I’ve been looking into something like this.

Seek 3, 4, 12 opinions till you find someone who will listen

I would definitely seek another opinion. I have not had any luck with getting help/input/treatment with rheumatologists. You may want to look into seeing a pain clinic - sometimes they get a bad rap but the one I go to has given me so much information and they actually listen and try to help. I'm so used to being brushed off by doctors so this was a huge surprise!

I should add that the pain is affecting my walking, I walk with a limp now. My spine is tender and cold, and my neck is tender and inflamed. I am going to ask for further X-rays of my spine to fully rule out ankylosing spondylitis. I have had a mri done of my brain with no findings so MS is ruled out. Lupus is ruled out by a blood test 97% effective. He will not diagnose me with any arthritis until I show on the blood scales. I have missed school and work because of this illness, and it has done a whole lot more that I cannot fit in. Other than the pain, it has also caused me to develop sudden allergies to gluten and lactose. Everything is pointing to some sort of autoimmune disease, but at times I feel stupid for even suggesting seeking help because of how the doctors treat me.