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Natalieisameme

2y ago

Chronic Pain and Frustration: Seeking Answers

For the past 6 months I have experienced severe chronic pain. At first it started as feeling bruised all over. Now it has progressed to affecting my psych (ex constant waking in the night, 3 hours of observed sleep average, tremors, head shaking, and something I describe as an attack of immense pain and confusion). My sed and RF factor is on the increase, but is still considered normal. I have a family history of arthritis and autoimmune diseases. I have had X-rays that prove degradation in my SI joints and inflammation in my hip. I feel it worsen everyday, and for the last 3 days my knees have been clicking and my hips are cold and stiff. They refuse to treat me, denying my pain and my frustrations. When I got a second opinion they were heavily concerned. Right now it is getting blown off, and I have started to have to use a cane to walk at night (when my pain is most severe). Am I right to be worried? I was in pain all over years prior, but marked it up to my battle with depression (which is currently at its best in a time so frustrating for me). That could be fibromyalgia, but I feel this is something more serious and needs treatment. Should I seek another doctor, the rheumatologist I seek currently blows my conditions under the rug and is retiring shortly, so he is not concerned in the slightest? Thoughts?

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Natalieisameme

2y ago

@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.
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scuppersant

2y ago

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!)
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Natalieisameme

2y ago

@YaYa631908 thank you!
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Natalieisameme

2y ago

@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.
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YaYa631908

2y ago

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

2y ago

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!
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Natalieisameme

2y ago

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.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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