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Tired of fighting for help

Started by the_watdabney on 07/01/2019 4:56pm

I have had severe back and SI joint pain for over a decade now. I was initially diagnosed with Ankylosing Spondylitis, but so far I've had conflicting opinions from other doctors. I have all the symptoms, the HLA-B27+ marker, family history, etc, yet because my blood tests don't show active inflammation (high sedimentation rates) the doctors don't want to confirm this diagnosis.

Since my pain started, it has migrated to different parts of my spine. My biggest problem currently is in my thoracic spice, just between my shoulder blades. It radiates to my right side and down my rib cage almost mimicking a kidney stone with right flank pain. I've just gone through with multiple scans, x-ray, MRI, and SPECT scans, all showing degenerative changes from arthritis and narrowing of discs. I had completed a trial for a spinal chord stimulator, and it helped a bit with my lower back, but the pain in my thoracic spine never changed. I'm tempted to just get the stimulator for the lower spine, but I need something to help the upper.

The pain management doctor who ordered the last scans has said he can not help since it is just "Mild arthritis" and is "normal for my age". This is infuriating me because that is all I've been told for the past 5 years, yet the pain is excruciating. One doctor even told me that I wasn't in that much pain when I told him my SI had caused me to crawl on the floor because I couldn't stand up at one point. This kind of dismissing of my pain has really taken it's toll and I'm at the point of giving up. If this is degenerative, and "normal" for my age, I don't want to live another year for this to get even worse.

I have not been able to work for quite a few years now because of this pain. I have lost everything in my life that I used to love to do. I can barely take care of myself anymore due to this pain, with the worst part being I can hardly clean myself after bowel movements because I can not twist or bend without extreme pain. Being told that nothing can be done to help has me lost and frustrated. I can barely sleep anymore and when I do I wake up in tears it hurts so bad.

What can I do? I can't live like this anymore.

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