Am new to the site. It's been more than a year since I've become disabled and I live in pain 24/7. I have undiagnosed pain in my right leg. If I stand still for only a few minutes the pain makes me collapse (and I have a high pain threshold). My neurosurgeon and the pain clinic are at a loss about what is causing it. Sciatica has been rolled out, there is no disc touching my spinal cord. They have done a normal MRI, a standing one, faucet joint injections in my lower back, a radioactive scan, xrays and still nothing. The did a scan which highlights areas of pain and my right hip and leg flair bright red. They suspect it is originating from my spine or lower back, the latter being exceptional weak. I have scoliosis for which I have had 3 surgeries with the final one removing the rods. I am at my wits end. Lying down is the most comfortable, then walking, the sitting and the standing. I am on a amount of pain meds which barely touches the pain. I have see a physio therapist who tried acupuncture and cupping, a chiropractor but still no relief. I am on the waiting list for a spinal cord modulator which is last chance saloon to reduce the pain but it is not a cure.
i don't know where to turn anymore. I've been bedbound for the last 2 days as the pain has been so bad I woke up in the middle of the night screaming out in pain and crying out for help. My husband and I would love to start a family but I can barely get through the day and if I wanted to get pregnant it would mean coming off all my meds which my husband doesn't want as he knows my life will be a living hell. He is a good man, kind, supportive and I'm the luckiest woman alive for having him by my side but he struggles seeing me in lain as there is literally nothing he can do but hold my hand, stroke my hair and wipe the tears from my face when things get too much.
I just don't know what to do anymore and that is how I ended on this forum, with the smallest glimmer of hope anyone may be going through the same thing or has any ideas.