Post by wavewolf on Feb 11, 2015 2:29:42 GMT -8
I started to post this on another thread, but decided to start a fresh one. My nerve pain is becoming more disruptive in my life, ironically because there is healing (remyelination) in my spinal cord. I have regained spotty and irregular sensory function, and even some very limited motor function. This has allowed me to better use what I have left, although having more control has not translated into greater stamina in mobility. And the increase in pain is limiting me more than the increase in control is benefiting me. Also I am having pain from things that I previously could not feel, which would not normally be causing pain. Examples are sheets touching feet lightly, dog brushing against my leg with body or tail, weight of my hands in my lap or of something I am carrying, etc. So, I am again reviewing what to do about managing pain.
Chronic nerve pain will wear anyone down. I am not able to tolerate opiates, so my pain management choices are pretty limited. Some options that have helped me cope:
R-alpha lipoic acid--suggested dose is 600mg day, divided into several doses to keep level steady (R form more potent than S or R/S)
distraction with something you are passionate about--this is actually one of my most valuable tools, but when pain gets so bad that I am rocking, I cannot focus on anything else
making sure your chair is adjusted/fitted so it is not causing more pain--turning point for me
trigger point therapy--seems to confuse nerves so pain message is thwarted
movement/exercise--counterintuitive, but it promotes natural healing mechanisms if you can continue long enough
Below are things I am researching, but have not yet tried.
Palmitoylethanolamide (PEA)--for some people, this is a miracle, and for others it doesn't make any difference; problem is source in USA (FDA approved it but is distrupting distribution); non-Rx but not OTC in USA, so you pay out of pocket and it is not cheap.
"Normast" is the brand name of a compound form. "PeaPure" is 100% PEA, Dutch manufacturer is now only source as far as I know. Ask your pharmacist/chemist about this, although it is not a prescription item. It is considered a nutraceutical, nutrion-based treatment. Some helpful links:
palmitoylethanolamide4pain.com/about-2/
painsandiego.com/2013/03/27/peapure-palmitoylethanolamide-for-nerve-pain-or-migraine/
painsandiego.com/2014/07/27/palmitoylethanolamide-pea-review-of-anti-inflammatory-analgesic-neuroprotective-mechanisms
Low-dose naltrexone (LDN). Helpful links:
painsandiego.com/2014/02/15/low-dose-naltrexone-ldn-novel-anti-inflammatory-treatment-for-chronic-pain/
lowdosenaltrexone.org
Ketamine plus a benzodiazapine has been used for intractable nerve pain, but there are risky side effects (psychotropic).
If any of you have tried these, I'd be very interested to hear your experiences.