@caregeraci15 ...Hi, sorry it's taken me so long to reply. I'll start with the prescribed pain meds I currently take.....tramadol (synthetic opioid) 50 mg, every 6 hrs.; pregabalin (lyrica) 200 mg. split into 3 doses through out day; methocarbamol (robaxin) 750 mg taken 2x at night only as it is a muscle relaxant; zolpidem (ambien) 10 mg, split into 2 doses at night (this, along with the methocarbamol is the only way I get to sleep). I never took opioids due to an allergic response to them. One over the counter supplement I take is ALA-alpha lipoic acid, it helps me with neuropathy pain, 1200 mg per day, split into doses every 6 hrs. I also apply a lotion called Cool Sombra, it helps reduce some of the burning at least temporarily.
My neuropathy pain is from the waist down, thru buttocks, and down both legs all the way to both feet. It's a 24/7 burning, achy, prickly pain, that makes it hard to sit, stand or lay down, there's no ''position of comfort''. Anytime my neuropathies are touched/compressed, they are not happy, it makes it hard to wear shoes, sox, long pants, etc. All my senses are amplified, due to the length of time I've had chronic pain....since March 2015. This is due to an overwhelmed, reactive brain that never gets REST. Another thing that contributes to the brain's reactivity is called ''central sensitization''....research it, it's worth a read!
My doctors and insurance said a trial of SCS was mandatory, due to the expense. I trialed nevro (did nothing) and boston scientific...I didn't think it was doing anything, but when they took it out, I noticed my pain going up. My pain prior to SCS was to the point that I didn't want to live, but suicide was not an option for me). I thought I would lose my mind. So, the SCS reduced the pain maybe 30-35%, not the 50% I'd hoped for. But to be honest, how does one really access the % of pain!? So, I'm okay with having done the scs and a peripheral implant (for buttock pain), because ANY reduction of pain must be done to keep your sanity. Pain changed my life, the implants didn't. I had to give up the outdoor lifestyle I cherished...backpacking, hiking, camping, biking, kayaking.....it's disappointing. I don't go to restaurants, social events, concerts, movies, etc., because it's too painful to sit. When I do sit, I sit on ice to numb the pain. And due to my age, 74, I have noticed that my L3-4 fusion is painful above and below the vertebrae that were fused and the laminectomy done on the T 9-10 vertebrae is painful, not allowing for much bending over...it's basically a ''failing spine'' due to trauma and age, a domino affect. I won't have the SCS or peripheral implants taken out, because that would inflict more trauma on the already tick off spine and neuropathies. It's a case of really not having ''good days'', it's just ''less bad'' days at this point in my journey.
Also, research the topic ''pain brain'' or ''how does chronic pain affect your brain''. A pain brain contributes to imbalance issues, memory loss, anxiety, etc.
What do I avoid at this point....don't bend over, this triggers more pain for me (I'm a gardener, so it's hard not to bend). Avoid sugar like the plague, it lights up my neuropathies big time. Avoid stress (yeah right)...if you don't feel like hosting, then don't host a party, whatever. Avoid wearing clothing that compress your nerves and cut off circulation!!!
What do I do to keep my sanity? I go on a WALK daily, if at all possible. I have to get out in the nature that I love, it's calming, I see ppl on our walking path that have become friends (a little community). I do light weight lifting, alternating upper extremities with lower extremities. You HAVE to keep your strength up, keep your joints moving, get your blood circulating around those angry nerves. Hug on your loved ones and your fur babies!!!
So, I hope I touched on your questions. It IS a tough decision to get any transplant, spinal cord or peripheral, but you get to the point that you have to try something. I'm really disappointed that big pharma hasn't come up with any NEW and IMPROVED drugs to combat pain...get that research done guys. God bless you!