[jenniegump]

i am 33 years old and i had a very bad accident about 7 weeks ago. i was at a friends house and i had gone to sleep about 3 am. i did not know that i was a sleep walker but let's just say i had a very rude awakening when i walked out her front door and straight off her 6ft. porch sleepwalking! i landed straight on my right arm (which is my dominant arm) and crushed my wrist terribly and my elbow came out of it's socket. a hand specialist was called in and took very good care of me but because of the extent of the damage the doctor diagnosed me today with rsd I am very depressed because it has changed my whole life. I have been learning to write with my left hand so maybe I will be able to substitute teach hopefully, but I was also a bartender and server which is impossible for me to do now. My friend whose house I was at had canceled her home owners insurance so now I am up to my neck with bills and no income! I have been prescribed percocet and gabapentin (neurotin) and I'm wondering if anyone has benefited from neurotin. It is my first day taking it today and it did not help with the pain but I think it has to get into your system. If anyone has any advice I would appreciate it.

[reruho]

Jennie,
First I want to tell you how sorry that you have been saddled with this horrible disease/syndrome. None of us with this disease would wish it on anyone. I have to tell you that developing RSD does not depend on the extent of your injury, many of us (like myself) had very simple injuries. I had a chipped ulnar and undisplaced distal radius fracture, very simple injuries.

Now, since you have been diagnosed it is time for you to become educated on your condition to protect yourself. Many members of the medical community have no knowledge or incorrect information on this condition. I recommend you download some information from a group like RSDS.org or RSDhope.org and carry it with you. Sometimes it is easier to hand someone printed information to read. I have made copies for my dentist and my eye doctor to keep in my records, they had never heard of it.

Also, I recommend that you read, read and read some more to better understand the nature of the beast that has come to live with you. You also need to assemble a team of doctors that can work together in your health care. I recommend you to try to find someone that has experience with RSD/CRPS. I recommend that you get into a pain mangement clinic soon, the sooner you start treatment the better the results. You also need to get into PT very soon, I credit much of sucess in recovering the use of my arm to early and intentsive PT.

You may need to consult a lawyer, your friend's insurance company may still have to pay. There may be a window of coverage, depending on long the time between the cancellation of the insurance and your accident. A lawyer can tell you this and make the inquiries needed. Most personal injury lawyers get a percentage and they will tell you if you have a case. I don't have much use for lawyers but my lawyer did right by me. He got me the max I could get. I was hit by an uninsured driver in her mother's uninsured car. I will never forget to get uninsured driver insurance with my car insurance again.

It is good you have found this forum, it can be very helpful in answering some of the questions that arise. I have received very little from my doctors, I have learned this on my own. I do constantly ask questions of my doctors. Doctors sometimes recommend things that they don't explain. I remember my first nerve block, I asked lots of questions on my forum about the procedure and what to expect. There are times when you will have symptoms that seems unrelated, this is a multi-faceted disorder that attacks your whole body.

Being a member of a forum gives you a chance to ask questions but also to vent. You are going to have good days and bad days. Sometimes you need someone who knows about your condition to really understand what is happening. You never need to apologize if you need to vent. This disease affect your limbic system and that will cause depression, insomnia and emotional problems, along with memory problems and many others.

"The limbic system is the home of emotions, motivation, the regulation of memories, the interface between emotional states and memories of physical stimuli, physiological autonomic regulators, hormones, "fight or flight" responses, sexual arousal, circadian rhythms, and some decision systems.
http://www.wisegeek.com/what-is-the-limbic-system.htm"

Here are some good websites to start with. Dr. Hooshmand is a wonderful site run by an expert in the treatment of RSD.

http://rsds.org/2/what_is_rsd_crps/index.html
http://www.rsdrx.com/what_is_rsd.htm
http://www.neurologychannel.com/rsd/index.shtml
http://www.rsdhope.org/Showpage.asp?PAGE_ID=4&PGCT_ID=547

Reta

[jenniegump]

rita,
thank you so much for your response and support. I greatfully have a doctor that obviously was familiar with rsd because he mentioned it right after i had my surgery due to what he saw. Although he is an orthopedic surgeon and not a specialist in rsd, he immediately got me into occupational therapy and said that was key to rsd and he said the same thing today. i am trying to learn as much as i can because you are correct there aren't many people who know about this. my mother is a retired nurse and she wasn't familiar with it but i am thankful for her compassion. It is very scary and a bit overwhelming at times. I have to try to somehow stay positive but the reality is that there is no cure for this and my life will be significantly changed, not over but definitely different.
my so-called friend who's house i was at has not even called me to see how I am doing because i have heard she is afraid i am going to sue her. i would not want to do that at all but i do have to figure something out financially. I have no insurance so I am going to start the disability process and medicaid process since I have heard it takes a long time to obtain it if at all. I have been doing OT for 6 wks now but my doctor did not diagnose me until today because he wanted to see how I responded to therapy. Now that I have been diagnosed I need to take some major steps and I am thankful I found this forum as you said to help guide me through all this. i am sorry to hear about your situation also but it sure does help to know we are going through the same ups and downs and we can gain knowledge and support through each other.
thank you again for the information i really appreciate it.

jennie

[reruho]

Jennie,
It sounds like you are on the right track.

I wish you my success. I was able to regain full range of motion and my strength. I do not have the staying power I once had but I can do most things. I can say I am able to live a pretty normal life as long as I take my meds and take care of myself. I still have problems with stress, the temperature, the humidity, the cold and the tropical weather of hurricane season in Florida. I don't have too many bad days.

My affected limb is my left arm, started in wrist and spread up my arm within the first 3 months. Most of my pain is in my upper arm and a little in the wrist on the bad days.

Reta

[jenniegump]

Reta,
how long has it been since your accident? the most frustrating thing about this for me is that it's my right fingers, hand wrist and elbow and i am right handed. i can't put my hair up, fasten my bra, or even cut my own steak by myself. i am becoming very creative however and i have been hand writing letters with my left hand just to get better at it. my therapist said by learning to write with your other hand it causes you to use the opposite side of your brain which helps prevent alzheimers and dementia. so maybe something good will come out of this.
it sounds like your doing really well with it which is wonderful, i can't wait to get to that point. my doctor said it was going to take a while.

[SALLIE]

Jenny

My husband has had RSD for about 8 months from a knee injury and surgery, He takes 1200 x 3 times a day of neurotin and oxicotine extended release. It took three months for him to walk without crutches and he still limps but he is improving. He has run out of the neurotin a couple of times and realized it makes a huge difference. I am not sure he could walk at all without it. He tried a nerve block but in only helped for a day and half. Early treatment is very important and to keep it moving as much as possible.

[Bussey]

Hello,

I am very sorry that you were involved in an accident, that resulted in you developing RSD. However, it was definitely a blessing, that you were already being seen by a Dr., with knowledge of this condition. He has definitely led you down the right path. Early diagnosis and treatment, are crucial factors, if there is going to be the possibility of a positive prognosis. I am definitely hoping for the best outcome possible, for you. It's wonderful that you have the support of your family. Situational depression, is another symptom of living with RSD. Everyone who suffers from RSD, has definitely been there, and can understand exactly what you are going through. If it becomes overwhelming, I would suggest that you discuss this with your Dr., as well. Everyone who suffers from RSD, is different, in some ways, and they respond differently to treatment. So, you may respond, more quickly to treatment than others, or not as quickly as others.

If you are interested, I have two excellent web sites, that may be very helpful to you. I definitely believe that patients should be as informed as possible, as it relates to any condition that they may be suffering from. However, some patients have found themselves in situations, where doctors have given them completely false information, as it relates to RSD, because they are not very knowledgeable, as it relates to RSD.

http://www.healiohealth.com/rsd-reflex-sympathetic-dystrophy-syndrome.html

http://www.webmd.com/pain-management/guide/crps

I hope this information will be helpful to you. I wish you the best.

Bussey

[reruho]

It will be two years at 3:20 pm on October 31, 2007.

Yes, on Halloween afternoon I had taken my son shopping for the last of his Halloween costume. We were on our way home when we were struck headon by a woman leaving a small private school with her children. She pulled out of the parking lot, turned left and hit us. I missed seeing this woman because a small pickup truck, had slowed or stopped to turn in the parking lot, had obscurred my view. This woman had no insurance and was driving her mother's car that had no car insurance. I remember she appeared so suddenly that I could not even shout an obscenity. I have no memory of the impact even today. I saw her, then my chest hurt and my car was filled with smoke. The smoke was talcum powder from the airbag, but I was thinking fire and was trying to get out of the car. I still get shivers when I pass the spot.

I was able to regain full range of motion within the first 4 months, but I was only in a cast for 4 weeks and did not have any type of surgery. I started doing PT/OT from the day I first got the cast off. I started just rotating my wrist (palm up, palm down), then I was given stretching exercises and then we started using light weights to rebuild the muscles of my wrist. After the RSD spread into my upper arm, I asked for some more exercises for my upper arm and shoulder. (My doctors never addressed the spread of the RSD.) I developed a routine of 12-18 different exercises using light weights, stretching, the floor and wall. I carried the silly putty in my purse and pulled out to squeeze whenever I was waiting. I worked through 3 levels of the putty. I treated my wrist/arm to 20 minutes of heat before doing OT 2-4 times a day at home everyday for 3 months.

My first month of OT at the hospital was twice a week. It was increased to 3 times a week for another month after I asked if it was RSD and I was waiting to get into a Pain Management clinic. My OT was only directed towards my wrist and not my whole arm which the RSD spread to by the end of OT. (OT is occupational therapy which is what they do for your hand/arm, PT is done on the rest of the body.)

I had two set of 3 stellate ganglion blocks within the first year. They have helped with the pain. I had some some painfree days after the blocks, the longest was 10 days. For me, when the blocks wear off the returning pain is lower. I haven't had a block in a year and I am still having good pain control.

Reta

[jenniegump]

sallie,
has your husband experienced weightgain while taking neurotin?

[jenniegump]

bussey,
thank you for your feedback, today was a bad day and I understand what you mean about depression. I am not a person who likes to ask for help and here i am having to. That is very depressing, but it is also hard to admit that I am depressed. i feel like admitting that shows weakness,but i am weak right now and i have to come to terms with that. this could not have happened at a worst time. i have just bought a house, which is a fixer upper. my mother and I were doing most of the work until now:(. I am so frustrated but all I can do is try to do the best I can. I now have to swallow my pride and know when i have to take a break, which bothers me alot because i can't do anything about it. it's almost like my hand has a mind of it's own and i can't control how it responds, painfully i learn the hard way.