Need help finding a pain management solution

I have my own therapy set up at home and do PT twice a week. I've done the full routine 9 times. Dr. and physio believe I know what I am doing well enough on my own now but go every 3 months to physio to take range of motion measurements and strength measurements. So far no improvement in any direction. The thinking is that it's stopping me from getting worse even if it isn't helping me get better

Have you received OT/PT for this condition?

Most of my pain is from spinal cord injury. Which not only causes extreme pain but during flare up give severe mobility issues. Like hands not gripping. Unable to move legs. Trouble holding head up without a brace.

🤗what causes you the most pain?

Ok, I'm not a doctor so definitely consult yours before listening to me. I used to take the max dosage of tramadol and gabapentin supplemented with morphine. Due to changes in the law, I was no longer able to take tramadol and had a very rough patch where I was forced to go cold turkey off all my pain meds. It was a week or two of hell but when I got to the other side, I was in less pain. When I first started on pain meds it wasn't for fibromyalgia, somewhere along the way, I developed fibromyalgia and would have episodes of writhing in pain while waiting for the morphine to kick in. I had to keep upping my dose until I was actually taking more than the recommended amount. When that wasn't enough, I started injections but they worked less and less. My body had become so dependent on my medication that it was inducing pain so I would take the drug and need more. Being forced off my meds was the worst and best thing that ever happened to me. I am now off all my pain meds. I still have pain, I would describe it as feeling like I have an allover sunburn and when it gets worse, I take Hylands restless legs capsules, it's available over the counter. I'm not saying this would work for you, especially since you have conditions I don't, it's just something to consider. It's counterintuitive but reducing your medications (under a doctor's supervision) may actually make you feel better.

Yeah, I've done the steroid injections and it actually made me hurt worse afterwards. Now we know that with sarcoidosis any pain is felt double with regular steroids and corticosteroids work little better

I used to get steroid injections and tried nerve ablation, it didn't last long enough for me but might work for you. The clinic was called a pain management clinic. You should be able to Google something.

I will find both of those on Facebook thanks. I live in Brownsville Texas

Where are you from? If you're on Facebook, please join American Pain and Disabilities Foundation and Don't Punish Pain Rally National (and your state page, too). Both of these help with fighting for pain management, etc.

Nevermind, I can see your dxs.

I'm in Dallas, TX. Are you looking for someone around DFW? What are your current dxs?