LOST in SWFL with New CRPS diagnosis
 

Sorry I'm new.. Posted on someone's thread this? Please forgive me, I'm just trying get myself "out here"... Need you ppl more than you know :hug:
Hey everyone.. I was also just diagnosed from an accident in beginning of this year and am scheduled with my first SGB in a week. I was 15 and struck by a car leaving me with a brachial plexus tear and parlayed my right arm. I had a SGB when I was in the hospital because of the excruciating pain and had success alongside exp nerve grafting. This was in 1990. I was able to live w manageable pain until 2011 car accident and the pain in my arm became well unbearable. I unfortunately have ortho issues with my shoulder also but the pain from the nerves was worse of the two. Putting my down few days a month and progressing to daily when I was rear ended at a stop light in Fed 2012 and now I am basically in bed 20 hours a day since. Had to move back in with my parents, lost all my clients and can't even bath my 4 year old. My 16 year old has been awesome. So my neuro sent me to UofM and they diagnosed me with CRPS with on set from a tear in feb. Feel like I made it this far thru life, actually trained in gym for years and survived a near amputation of my leg to be handed my butt on a platter with CRPS. I'm on 100mg Fen patches and taking up to 8 30mg 0C a day with neurotic 3x day. I've been on meds for a year and this is all I can do to function. I pray that the SGB will allow me enough relief to begin therapy. With the already complex nature of my preexisting injuries it's all I can do to stay positive but I know God didn't bring me this far to have me in bed the rest my life. The burning is so bad and I bite back the tears when my 4 yr old climbs into my lap she deserves better. Sorry for venting on your post. I just joined and reading so many similarities brought me to tears, I'm over asking why and moved on to how much more..... My list of what I want to be able to do again in long and I won't to beach the other day only to be in misery from the breeze. I need the support of all of you, my sanity depends on it. Thank you for sharing you inspiration and hope. I won't give up today.

It sounds as though you have been through alot. :Sorry: But I welcome you to the group. :grouphug: having rsd is not fun and everyday is a different challenge. Some better then others. But you are right, God has a plan for each of us and I agree with you I don't think it was to spend your life in bed.

I hope you get relief with the SGB. If not keep trying this and other things. Just don't loose faith.

:welcome_sign:

Remaining optimistic is challenging but I learned a long time ago when there isn't relief laughter and one good turn for someone else a day helps the most. So... I have my mom driving me to the mall with my 4 year old MJ to go to Build a Bear. Her smile and the distraction is my peace for today. God bless and thank you again for the rm welcome.

Hello to you, and I have to say I just joined this group yesterday,and have already found lots of support. They have given great ideas and reading others success stories brings great hope! I also have been newly diagnosed and wanted a cure and relief right away, I have come to terms that is not going to be the case. Hang in there I just moved from maryland and when u say U of M im assuming u are referring to university of maryland. If that is the case there is a great doc at John Hopkins Pain Management Dr. Raja He was very helpful in starting me on the right path. Keep you head held high, this too shall pass! God Bless!

Thank you but I meant University of Miami.. I wish Jhp. They are the best! God bless and prayers goingup for you also.

hey momma dukes.. you are in the state of the crps/RSD research center.. and a lot of good dr,s as well. try looking them up via web and see what dr,s you can see out of the clinic.. or see if there is a way to get into the clinic.. worth a try.. maybe the cyan work with you other docs as well.. good luck

pain man is right. You should check them out. Supposibly they are one of the pionners (sp) in RSD so you should get good care.:Dancing-Chilli:

I have heard. I'm in Naples and the institute Is in the Tampa area. Went to UofM pain research center and the dr dx me in less then 10 min. So far from what I have exp the drs have been very helpful...once I got to the right ones.:) I'm goin in next Monday for my SGB and pray pray pray. Yesterday my one good arm started symtoms and I woke up this am with part of my arm numb and fire. Sorry typing bad my pinky andring fingers r numb :confused: need to believe its not spreading to my only useful arm. Need all of u :grouphug: thank u

Dr. Patin at Univ of Miami trained with Dr. Schwrtzman in Philly. He has an awesome reputation. He works in the Pain Clinic. I understand they accept insurance.

The RSD Institute in Tampa, Dr. Kirkpatrick, also has a good reputation. But he does not accept ANY insurance, and it costs $2,500 per day for ketamine treatments.

I highly recommend the RSDSA.org website, there is a ton of great stuff there! Ketamine infusions have helped me regain a good chunk of my former life.

Wishing you the best, Sandy

I was blessed the assIstant professor of UHealth (U of M pain center) Dr Vania Fernandez. (God thing I was suppose get a different dr but ended Up with her and she's one of the best pain specailists on staff) Within five min she asked me if i knew WHAT CRPS WAS, took her time explaining it to me and ordered the first stellate gang block. Hopefully the block will help..I am in bed today and just trying make it to Monday.. I have no insurance but VR is pAying for up to three blocks. Thank u for your input and advice.