Hello to Whoever - Reflex Sympathetic Dystrophy Message Board

Bob A · 09-08-2003, 09:49 PM

This is my first time ever on one of these boards. I'm not sure why I'm doing this. I guess because I need to vent out my problems and hostilities. I was diagnosd with CRPS a month ago. My accident was on Feb. 20th. of this year. I had 13 Doctor visits and went to 36 sessionns of painful Physical Therapy, including at the end of every session having an Ice Boot put on my foot and ankle area which after about 2-3 minutes felt like someone poured lighter fluid or gasoline on my foot and lit it. They did a bone scan at 20 weeks after the accident because the doctor thought I was faking the pain, but the scan came back positive with the majority of isotopes going to my left foot. It was crushed by an 800 pound pipe that was dumped on me by a fellow (ahss hole) employee. The pipe also hit my left knee causing a cartilage tear. (as per the MRI) When I walk the knee clicks and when I squat it locks up. I can't remember **** any more, My pain level at time is sooooo bad I just want to take something and cut off my left foot at the akle. The Doctors are now sending me to Behavior Health for Anxiety and Paranoia. I'm not nuts. I'm just in alot of pain. On a scale of 1 to 10 the pain at time doesn't even come close . Sometimes both my feet, ankles and lower legs feel like comcrete logs and the pain is more like 20 or 30. I also had a nerve block which helped for approx. 1 1/2 to 6 hours. BIG DEAL. The Doctors have been feeding me so many narcotics that now I'm starting to have blurred vision and I'm hearing voices. I can't take anymore of those drugs, they all make me too sick. I spend hours throwing up. Some fun when there's nothing in your stomach. I eat Advil and take Neurontin & GabbaGabba something or other. (I forget) Doesn't mean much anyway. I can't sleep I can't eat I fear going out. OK. I'll stop. Probably no one will respond to this posting because none of it makes any sense. Neither does this so called CRPS that I'm so posed to have. (PS: I still don't believe it.)

[This message has been edited by Bob A (edited 09-11-2003).]

cattys · 09-08-2003, 10:18 PM

Hi there Bob,

Welcome to our RSD family. Sorry it is under these circumstances. RSD does put a hult to our life. I have had it for 3 years now from a work injury. I now have a spinal cord stimulator.

I still at times think to myself that I do not have this monster. It has taken control over every aspect of my life. I also suffer from depression at times and panic and anxiety.

You just hang in there we all understand here what you are going through.

I hope you have a good evening.

Cattys

AngeInBoston · 09-08-2003, 10:28 PM

Hi Bob

Welcome to our Board! I'm so sorry it has to be under such horrible circumstances! You sound like you've been going through such Hell!

This Board has been the BEST place I have found to learn about the REAL realities of RSD....I'm here because my Husband Joey got RSD in his left Ankle after having foot surgery in late March.

If your Drs. do not understand RSD, which MOST do NOT, then you MUST DEMAND to be referred to a BIG HOSPITAL's Pain Center, or to a Pain Management Dr, both of which are usually Anesthesiologists, who understand RSD and how to help the Pain! You DO also need AntiDepressants, so the Psych Dr is good to coordinate those with your treatment plan.

Generally the Treatment plan seems to be to try to BLAST the RSD with MANY blocks, hoping that one will finally be the one that snuffs it out, although there is no cure, it can go into remission. If you get into reading this Board, you will learn ALOT about everyone elses experiences and the different kinds of treatments as time goes by and they get more serious....

Good Luck, Bob, I hope you find that this Board is filled with friends who understand what you are going through, when no one else in the world seems to! Come here to complain, to ask questions, to tell stories....just come back!

~Ange

savysac · 09-09-2003, 12:58 AM

Hello Bob,

Welcome to the boards, it is too bad that it had to be under these horrible circumstances though. I hope you find some support and answers.

I have had RSD for 10 years. I got it from reconstructive surgery of my left tibia/fibia after a terrible otj accident. I worked for a railroad as a track laborer. We were picking up bad peices of rail and placing them on the boom truck so they could be transported to the scrap pile. My foreman sent me up into the bed of the truck to get a certain tool, the assistant foreman was operating the 20 foot boom. He did not take the time to check if the bed was clear and he started to move the crane to pick up the next peice, the boom came down and bumped a section of 20 foot rail that weighed approx 2800 pounds. The rail started to slide out of the truck bed and it was headed right for me, I tripped as I was trying to jump out, and my head was in the path of the rail, the truck driver pushed my head down, out of the way of the rail's swing up against the truck, and the rail struck my lowwer left leg, pulverizing the bone to dust, the only thing holding my foot on was skin and ligaments. Had the truck driver not ducked my head out of the way, I would have been decapitated.

The burning pain of RSD is the worst pain imaginable. I suggest you read some of the other posts, like the MCGill pain index postings. The MCGill index is a good way to visualize just how devistating the pain of RSD is.

I agree that the most important thing with in the first year of diagnosis is to find a good Pain management doctor. Do not settle for any thing less. This is your life we are talking about. Dont be afraid to stand up for yourself and dont be pushed around by those in the medical community that have no idea what your going through. Do not have any procedure, test or thearapy of any type done until you research it and are comfortable with it.

After 14 total nerve blocks, dozens of differnt pain medications, and an epidural block, I finaly got my pain to a managable level or 3-4. It was that way for 8 years, until I reinjured my left foot last year, and my pain level shot back up to 9-10. Where it has remained.

If you have any questions, dont hesitate to ask, if you have any comments, speak up, and if you need to whine and vent, feel free to do so.

Again, welcome aboard.

peace

terry

riceneuroni · 09-09-2003, 05:08 AM

Hi Bob, Welcome

Glad you found us, sorry you are here

Jokes aside, every bit of what you said makes sense! Including hearing voices from the meds. I'd venture to guess you will find someone here who has gone through the same things you've experienced (from the severe injury, to doctors and physical therapists who are ignorant about how to treat RSD, to severe side effects from meds). I hadn't mentioned it before, but I've had auditory flash-backs from time to time. I'm glad to hear it was most likely from the morphine as I'd hate to think I was developing schizophrenia too!

Welcome, read, and try to relax. You are among friends.