A few months ago I had a lumbar puncture and sensory tests done as I have we been diagnosed with CNS Lupus with possible high chord lesion. My symptoms are chronic pain down my whole right side. My symptoms, thankfully have not changed in 18 months and I have been on very strong (and potentially addictive) pain meds.
My results came back all clear. This, I know, is fantastic but it me a means they have not found the reason for the pain. The pain intensifies with any activity. My neurologist is going to speak to Dr D'Cruz to ask what the next step is. The thought is to take a risk and start me on immune suppression meds and hope its the right pain. My next appointment is April which is so far away.
My occupational health therapist has said that as I have been on pain meds for so long I need to start coming off them and start to do exercise again.
I feel so frustrated.
Do I wait for my neurologist to decide what to do? What if they say they can do nothing? What could be the cause of my pain? Do I try come off my meds? Is there alternative meds/therapies I could try?
Any advice would be helpful