Greetings from a new member managing full body RSD
 

Hello,

I was told about this site earlier today what I have read so far is very interesting and comforting. I have full body RSD/CRPS. I was diagnoised about8 years ago. I had disc fusion at C6 and C7. The nerve in my right arm that was pinched by the ruptured disc was stressed before it completely healed. I used the arm to pull on a comforter stuck between the mattress and foot board. Over a two year period the RSD spread from my right arm to the left and then my legs. In the last couple of years it has started to affect my heart and lungs. Like all of you after many many failed treatments and 12 different doctors from different parts of Ohio. I finaly have a team of doctors who understand RSD and can help me manage the flair ups. I have been to Philly to see a specialist who treats the condition with Ketamine infusions. They didn't work for me and now he has given me the option of going to Germany and being put into a Ketamie coma. He says I have a 50/50 chance of it helping me. I have some concerns and haven't agreed to have it done. I see a Chiropractor 3 days a week sometimes 5 if I am flaired. He is an activator doctor and his adjustments have helped me stay off the heavy drugs. I tried that way and I couldn't handle the side effects. I go to the YMCA and water walk and take a 1 hour arthritis class twice a week. When my body is red and on fire from the RSD the cool water feels great. I took long term disability from my job, that I loved, 3 years ago. I refuse to sit around and let the pain destroy my life. In the beginning of this challenge in my life I almost gave in to suicide. Instead of finishing the walk to my garage and starting my car I got on my knees and gave my burden to God. Every day I ask for the energy and strength to get through the day and every night I ask for the peace of mind that passes all understanding so I can get a good night sleep.
He has never failed to meet my needs. The truly hard part was giving my health concerns to him and allowing him to work in my life. For 5 years I tried to handle it my way and I was miserable. Once I gave him the burden relief started to happen. One right doctor lead to the next and now I have 5 doctors I see on a regular basis that help me cope with all that is happening to my body. On the days I don't go to the YMCA I volunteer at a nursing home and for a pre-school. I can't handle the stress of the career I once had. But my life is complete and my health doesn't manage my life I manage my health.
I can't tell you all of this without telling you that I also have an amazing support group. I have a wonderful husband, 2 kids and amazing brothers and sisters. RSD has taken a lot away from my life and caused me to do a lot of things differently. But, it hasn' taken away the love and support of my family.
I am looking forward to learning from all of you and supporting you in any way I can.

Hello SBowling,
You have an incredible story of faith. I run on faith too. I'm new here today myself, and pleased to meet you. It seems we have been to the same doctor. (In Philly). I live near there, and if we're talking about Dr S. he is who diagnosed me so long ago, but after a 7 year, 100 doctor battle. I've been through the ketamine, but not the coma.

I wish you all the best!
Keep Prayin'!

ASB

http://i489.photobucket.com/albums/r...welcomecat.gif

Hello sbowling, and welcome to NeuroTalk! :Wave-Hello: This is a great place to hang out with lots of caring and helpful people.:)

Here is the link to the RSD forum, although it looks like you've already visited it. But, just in case you haven't: http://neurotalk.psychcentral.com/forum21.html

Hello ASB,

We are talking about the same Doctor in Philly. I didn't make it through the ketamine treatments 4 hours a day for 10 days. They were stopped after the 4th day. They weren't helping and thats's when he said I needed a much higher dose and that could only happen if I were put into a coma.
Our God is an awesome God!!!
My prayers before RSD to God where slow my life down and allow me more time to work for you. God doesn't always answer our prayers like we think he should. He slowed my life down and once I understood he had answered my prayer I started to accept my RSD and went into a mode of learning all I could about the condition. I have a lot of time to spend with God my walk with him is so much closer. A few years ago when I was trying to handle things on my own. I woke up in the middle of the night and and the Holy Spirit told me if God brings you to it he will see you through it. That's when I understood I needed his help and he hasn't failed me. Dr. S in Philly can't understand how I manage without more medication. I told him it's simple God is in control.

Hello!
 

I just wanted to say hello. You are the first story that I read. I wish you the best. I am at first stage of RSD. I have had 4 nerve blocks and it hasn't helped. I just made an appointment for a second opion with Dr Maleki who works with Dr Schwartzman. I have it in my right foot and it is spreading up my leg. I had Tarsel Tunnel Release Surgery on 12/19/08 and they put the cast on too tight and the top of my foot was damaged. I am lookinfg for any hope that I can get. I thank you for your support.

SBowling, and Chrissy;

It seems we may have some things in common, besides the disease. Now that the name is out, yes, Dr Schwartzman diagnosed me, (after a Chiropractor recognized the disease from another patient) and soon he left Jefferson, for another hospital, and I was on the Ketamine there for 10 days.
(Hahnemann).
I couldn't tell if it made me feel better, or it was the "vacation effect".
(My evil (sorry) wife couldn't get to me, and I had my Powerbook, and layed in bed watching DVD's.) I met another lifelong friend while there. I'm trying to bring her on board here.
I can still consult with Dr Schwartzman, but I stayed on with Dr Knobler, and then to his K.I.N.D. Clinic (Knobler Institute of Neurologic Disease) pls, excuse my spelling. I do think the Ketamine helped.
Dr Knobler is in Fort Washington, PA. A wonderful man/doctor.

GOD.
I cannot go back to a life where God is not at the center! I cannot stress this enough, and I don't want to be preachy.
A friend just stopped by to give me a ride, and he was "spun out" in his head by some crap at work. I told him, make a call, express yourself, and give it up to the man! (He's not there yet).

You do your best, when you can, give it your all. Then, you must hand it over to God, and have FAITH!
And, if your faith is true, you will NOT be let down.
His plan is not YOUR plan. It's "His will be done".
And, if you're strong enough to accept that, that's all the strength you need.

Soon, you'll find yourself helping others.
THAT feels good!
For as gimpy as I am, that I can still do some good.
Amen.

I'm in NE Philly right now. Let's keep in touch, shall we?
:grouphug:

ASB
Pete

Hey ASB,

I like the comment about "His will be done". I sometimes find my will in the way and I have to ask him to help me accept his will.

I live in Southwest Ohio and for now my visits to Dr. Schwartzman will be via phone. When I do have questions he is great about returning my calls. He even did a phone consultation with one of my doctors here in Oh. Who needed some help understanding the effects of RSD.

My husband will miss the trip every six months. After every visit to Philly we had to make a stop at Gettysburg PA. My husband is a huge Civil War buff. He did the walking tours while I slept in and took my time getting moving. When he got back from his tours we would go on car tours of the monument park. We did take in a Pilly's game on one of our trips to see Dr. S. we were impressed by all the major sporting teams arenas being in one location.

Lets do keep in touch.

Take care,
Sbowling

Hey Chrissy,

My first appt. was with Dr. Maleki (2 years ago). He helped me understand RSD/CRPS. He also stressed to me to be an active participant in my health care. Even thought I had to make a nine hour car ride to get to Philly it was worth it just for that advise. Ask questions when you don't understand. We have a complex health condition that outside of Dr. Schwartzman's group and a few other doctors, it is not very well understood in Western Medicine. Visit the RSDS.org web site there is a lot of good information on the site. Take things one day at a time and enjoy the days when the pain isn't so bad.

Best of luck,
Sbowling

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help ... hope to see you in some of the forums ... again
http://i371.photobucket.com/albums/o...hcccwttg-1.gif