Posted 1/19/2016 9:58 AM (GMT 0)
Hi Jo and welcome to the forum and like Susie said I wish we had some magical powers to share but each of us have had to learn our own coping system. Neuropathy is by far the most challenging of the forms of pain to manage. Here I wanted to chime in and say speak with your Dr about alternative routes of meds such as transdermal options as these are somewhat easier on folks who have liver issues and for some these are the only forms of meds that can be used. Types are limited of course since not all manufactures make many meds in transdermal forms,wish more would considering the vast numbers of people who have metabolism issues.
Throw in the fact that theres a very limited number of meds that touch nerve related pain and options are few. We try to stress to people who have not been adequately diagnosed to be leery of physical therapy and chiropractic services,both serve a awesome demand and need but adequate and correct diagnosis is vitally important before the start of either. As you sadly found out why.
We get asked your question probably more than any other,how do we cope,how do we live a decent enough life with CP? Again no magic one size fits all thing. The first necessity is acceptance and if you have surgical options open to you your not there yet. Acceptance comes when all those options have been exhausted and your faced with this is as good as it gets. Reasonable expectation of pain relief is the next best defense,being a CPer is being in chronic pain,years,decades or a lifetime,holding on to hope that someone,someday discovers a new med,treatment,procedure that could break through the cycle but accepting that may never happen. Research,gaining knowledge,taking control over your right to adequate treatment,being aware of your choices for treatment and getting a fair understanding of the best outcome,having the best quality to your life through whatever means are available by the best suitable for you medical team you can acquire willing to assist you in your goal of reaching the best quality of life you can.
This takes time and patience and searching sometimes through countless appointments,specialists and treatments. This often times includes mental health treatment and this by far was my most productive means early out. I was lucky enough to find a psych doc who was actually a CPer himself and taught distraction techniques and I became really good with it. Decade plus still use it daily to relieve stress and lower pain levels.
Most of us develop our coping as we progress adding to and learning new things. We also have turned to alternative treatments as well as the old reliable conventional methods and as the world of Pain medicine has changed we have learned to change with it. There was a time medicating was the priority and first defense but as rules and regulation of drugs has come under tighter control we have started seeing other treatments head up that place of forefront defenses. We know use meds as a last resort treatment after we have lowered the levels of pain to the minimum we could obtain using all we have in our tailored arsenal.
Social media and forums such as HealingWell are just one of the things we can do,here we can express ourselves,find empathy and understanding and validate our issues as real and important. We gain support and understanding and we share things we discover that may help others and things that are not so good. Many of those coming here are in the grieving process for the loss of their lives as they have known it. Careers ending,lifelong activities nolonger possible,mobility challenging,and housekeeping changing along with family roles. We have to learn to do things differently than we have been taught or done in a way for years. Relationships falling apart and intimacy becoming nonexistent. We virtually suffer from the loss of self and everything as we have known it.
We have to change and restructure our lives but its still important to those who love and need us. It can be overcome and you can be a productive happy person who is living with a chronic disease in this case pain.
I hope you stick around and we will show you what we have and somewhere in what we share you can find things that help you learn to live with chronic pain and your sharing could help others as well.