Dear Sarah,

The only way I can think of that most of us would be able to survive without the "addictable" meds is if we had something else for the pain that worked. Right now I know that I don't. I really would like to start on Lidocaine infusions. (The information for which I received from another wonderful, generous member of this board whom I believe happens to be a member of the Canadian Health Care system). When I gave the Lidocaine info to my RI PM doc he wrote he a letter the next day quitting my case. When I gave the info to my Boston PM docs they wrote up 4 different requests for my insurance company, all of which were rejected. So here I sit, still on percocet, waiting for another SGB in a few weeks, that will probably only a few last weeks, then we'll do it again, etc.

My PCP has told me that if you are in pain and take narcotics for it, then technically you are not addicted. Since I haven't stopped taking percocet for a pretty long time I just don't know how true that is. I know that when I increase my physical activity on weekends because I am cleaning the house or the yard I will deliberately increase my meds because increased activity usually causes me to get excrutiating headaches.

I'm so sorry that you have to face the issues of pain and addiction at the same time. That must be really awful. Perhaps if you could gain access to lidocaine or ketamine infusions the need for other meds would be eliminated. Can you discuss those options with your doctors?

The best of luck to you. Sandy

Hello Sarah,

Please follow the advice to check some of the other forums. There are a lot of wonderful people on here with good advice. It helps to talk with people.

I have full body RSD. I go to the YMCA 2 sometimes 3 times a week. The exercise is good for you and you are weightless in the water so it doesn't hurt. Y's have financial assistance availiable to those who need help.

God has been my biggest supporter through all of this. I ask him for strength and energy to make it through the day and peace of mind so I can sleep at night. He has NEVER failed to meet my needs. My doctors are amazed at how well I manage with full body RSD it also effects my heart and lungs. I tell them I would be worse if it were not for my God. I went through a suicidal stage. As I walked toward the garage to start the car and take my life. The holy spirit intervened and I stopped and fell to my knees and prayed for help. I let go of my burden of sickness and gave it to the King of Kings and Lord of Lords. The book of Proverbs 3 vs. 5-7 Trust in the Lord with all thine heart and lean not unto mine own understanding. In all they ways acknowledge him and he shall direct thy paths. Be not wise in thine own eyes fear the LORD and depart from evil.
The only good thing that has come from this terrible condition is my personal reationship with God has gotten better.
Feel free to send me a personal message and we can talk.
God is free and only a prayer away!!
I wish you the best of luck and may God bless you!!
Take care,
Sherrie

Hi Sarah -
I'm not sure your doctor should be calling you addicted. Most RSD pain can only be controlled or slightly reduced by using drugs that require increasing doses to be effective (e.g. narcotics, opioids). That is not being addicted to the drugs. Addiction is when you are taking the pain meds for reasons OTHER than pain control.
Also regarding the cutting -- this is an RSD issue, not a separate issue for another board. There is some biological brain research that shows higher activity in the brain that relates to the urge to cut in RSDers than others. A lot of the urge does have to do with creating an alternate pathway to the brain that overrides that same ole boring RSD pain. Even an alternate pain pathway.
I hope that you can feel 'normal' (?!) for struggling with both the meds and the cutting. Mostly it's part of the miserable disease... hope your docs are willing to do some RSD research and learn about these aspects, so that they are not too judgmental.
HUGS