u/job-medium-rare

This past month has been insane for me. Losing several friends for unexpected/out of character reasons, and ending up in a position that is really impacting my life. I’m moving unexpectedly during the busiest time at my work which has triggered a flare, and at the same time dealing with interpersonal stress from lots of bizarre angles.

I’m just frustrated because Ive experienced chronic pain and the mental health issues that for me come along with it, and I keep thinking ive got it managed in some way and then life challenges me on that (rinse and repeat)

The friend stuff is bizarre. They know the situation I’m in and are so not there to support me, which they have previously in the past. I want to have faith in them but this behaviour has really hurt me. I’m struggling to figure out whether I’m using my pain to villainize peoples actions or if I’m being treated unfairly. I’m realizing that with some people I’ve not actually felt comfortable talking about my health situation, and not sure if that’s a problem or not. I wish I knew more people with similar experiences to me so I could have those kinds of conversations with people who get it, instead of reacting with fear, anger or disgust. At the same time I don’t know if that’s a fair expectation to put on my relationships with able bodied people. Is it just normal to have to tone down this part of myself?

I feel like I have to try so hard to manage the rest of my life when I have this constant pain in the background. I’ve had it for so long I had hoped I would learn to cope with it (and in some ways have) but as my situations deteriorated I’m only getting more exhausted of putting all this freaking work in to maintain these relationships!!!

Looking for advice or any similar experiences!

My history is: diagnosed with a grade 4 spondy at L4/L5 by age 13, with a typical fusion at 14. That first fusion resulted in several complications (CSF leak, failed hardware, re-dislocation) and never relieved pain. At 16 I had a subsequent fusion including the pelvis which did actually fuse but also never relieved pain.

Now in adulthood (23) my pain has regressed to a similar level as pre/between surgeries, except is it focused on the SI joints and above the fusion. It’s undetermined whether this is pain related or not related to the fusion as I’ve been trying and failing to get a referral to ortho for almost 4 years now. I do have a rheumatologist looking into possibilities like psoriatic arthritis and ankylosing spondylitis.

I’m curious if anyone has experienced anything similar to this, failed fusions in childhood, spinopelvic fusion, etc. I’m also curious, if anyone has developed degeneration or another spondy above their existing fusion, what was your experience like?

Lately im a bit at the end of my rope with pain as I only have Celebrex and voltarin to manage it, and heat/ice is not doing anything lately. Ive also developed some numbness in the past week which frankly feels like a blessing as it’s so much easier to handle in the moment than the constant pain lol. So advice for managing it is welcome.

Thanks for reading