Our Stories & Introductions

LISAR624 · 11-23-2014, 01:49 AM

Quote:

Originally Posted by RSDmom

This has been a hard story for me to write but here it goes....

My daughter, Rebecca, was 8 when she was bitten by a spider and possibly hurt her foot in the snow. She developed a mild case of RSD (at the time, I thought it was horrible) but PT and time took care of it. She didn't miss school and life was great. She was LUCKY to be diagnosed within a few weeks of it starting by a fantastic doctor. The dr only took 5 minutes to diagnose but followed up with tons of tests to confirm. We were in PT that afternoon.

The monster slept for two years. To the point, I had almost forgotten it. Then, in PE, a mile run in the gym, set off the chain of events. While at an appointment for my other daughter, Annie, to diagnose RSD in her wrist, Rebecca was on crutches and the good Dr had her in PT that day. Six weeks into this flare, with a frozen foot and no help in sight, our dr referred her to a pediatric physiatrist. She is amazing! She prescribed Neurontin and continued PT and brought in a pain specialist. He performed a series of nerve blocks and provided many alternatives to them if they didn't work, but thankfully a set of five blocks worked and with PT, we got her walking again. She missed four months of 6th grade. But took tennis lessons in her wheelchair!

Seventh grade. Someone twisted her foot again in a collision. Back to the clinic, back to PT, back for 3 nerve blocks. I think we had fewer nerve blocks because as soon as the foot froze, our dr scheduled her immediately. She missed 3 1/2 months of school but had a homebound teacher. RSD moved to right hand for a total of one week. Our dr saw us the same day as it set in and gave us options, luckily we didn't have to use them. Weird.

Eigth grade (current). A great year. Wonderful teachers, fantastic support. Becca, living in my bubble, was walking down our outside steps and twisted her OTHER ankle. 'Just a sprain Mom! ' were the worst words I had heard in a while. The sprain came and stayed. It has turned into RSD and 6 weeks later, here we are. A huge fear for us, is that our pain dr has moved. He feels the new dr will be fine for us and she will do pediatrics.

She is not in school right now, but is trying hard to get back. We had a horrible week last week--but this week is better. The rollercoaster continues.

I know this is a place for RSD patients to ask each other for help, but I really feel like families suffer from it. I hope you don't mind if I chime in. I do think at times it is harder on me than it is on her as she is so supportive and optimistic. I wonder where she gets her strength. My girls are my heroes.

You have been wonderful support for your girls! They are very blessed to have a wonderful & supportive family. Ilost my mom July 2013 and she was so supportive and being there for me. It is great there are support groups now!!! LISAR624

heatherg23 · 02-09-2008, 01:34 PM

I have to say thanks for your story. I was trying to find people whom has had the burning pain travel through other parts of the body. I have a lawsuit going because of an accident that caused my rsd. It started in my feet and achilles tendon's. 5-6 months later I also had severe burning pain in the back of my calf, thigh and my butt burns as well. I can't sit for very long, stand or walk. I actually lay in bed all day. I have to find a way to prove that rsd can spread. Just sitting here typing causes to much pain.

Thanks again
Heather

Quote:

Originally Posted by dlkeil

Hi,
My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink:

nopainever · 02-10-2008, 12:14 PM

Here is an article that you might be interested in...

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=79

Sorry to hear that you have RSD also. My thoughts and prayers are with you!

Heather

katcam831 · 05-11-2011, 08:20 AM

Quote:

Originally Posted by heatherg23

I have to say thanks for your story. I was trying to find people whom has had the burning pain travel through other parts of the body. I have a lawsuit going because of an accident that caused my rsd. It started in my feet and achilles tendon's. 5-6 months later I also had severe burning pain in the back of my calf, thigh and my butt burns as well. I can't sit for very long, stand or walk. I actually lay in bed all day. I have to find a way to prove that rsd can spread. Just sitting here typing causes to much pain.

Thanks again
Heather

I realize that this response comes many years after the question was asked but YES, RSD can and does (for many) spread. Drs. Robert Swartzman and Anthony Kirkpatrick (you can search for them online) can most likely provide you with written studies proving this. Dr. Swartzman is in PN and Dr. Kirkpatrick is in FL. Sometimes the disease never spreads (lucky folks) and others may not spread for years...others (like me) have very rapid spreading of this demonic disease. Mine began in Feb '09 and was full body by Dec '09. I was hospitalized in April of '10 with internal bleeding associated with the RSD.

Good luck,
Kathy

ichigopocky · 06-18-2011, 07:40 PM

I am 16 years old and I was diagnosed in March with CRPS only after one month of the initial pain. They still aren't sure of what caused the pain in my arm but already 3 months late I am a lot better then before.
However due to this two other medical problems have come up so I am having to deal with that and school work.

But for right now I am really just wanting a place to talk to people who understand the pain and everything I am going through. While I know my parents and friends love me and know something is wrong the second hardest part of all this is the loneliness.

mtmelody · 02-17-2008, 10:45 PM

I feel for you. I am ashamed to admit that at first I worried that my son liked the meds a little too much. I DID NOT understand. I apologize to all of you out there who have your loved ones questioning your issues. My son is just 21 and I think I was in denial "Not my BABY!!!"
Well I hope the medical profession catches up soon, because this is so real, so important, so life changing and frankly...I'm mad.
Please excuse me for venting a little...this darned thing (rsd) makes you feel alone. Does any one know how to find people who suffer with this in their area? I live in Sterling CO, (NE Colorado)

Lissa_K · 02-19-2008, 01:35 PM

Hi. My name is Melissa and I was diagnosed with what my ortho called "mild" RSD about 7 months ago. I fell and had a tiny fracture on my fibula at the spot where the nerve wraps around the bone. I was put in a walking boot and told to do "light duty" at work. About a week later I went to the ER because I couldn't feel my foot and my aunt (an RN) couldn't find a pulse. The attending mentioned a possibility that I could have RSD and that I should ask my ortho to look into the possibility. My ortho blew me off saying it was way too early to consider RSD. A month later I was still having burning pain and now I couldn't feel my two outer toes at all. He then conceded to treating the RSD with PT, but no meds. To this day the only serious pain med I have taken was the 2 week supply of Vicodin I got at the ER when I broke my leg! I have my good days when my only issues are the numb toes and the hairy legs (when I can actually handle the burn of shaving my leg, I cut myself too much and don't realize it... So I don't bother most of the time), and then I have my bad days when I feel like my leg is being dipped in molten lava and then rolled in thorns. I guess I was lucky that it was diagnosed so quickly, but I didn't get any real information on it. No one told me it could spread. No one told me it could worsen over time. The more I read the more terrified I become and that horrible sense of hopelessness creeps over me. Because of my uninformed state, I signed a settlement with the insurance company that released them from any further liability. I was off work for 3 months and I was so desparate to pay bills, and my PT and ortho both told me I was fine. Now I'm not sure what I'll do. I can't afford to see a doctor and even if I got insurance, it wouldn't cover a "pre-existing condition".

ndsrsd · 06-02-2009, 09:52 PM

Hi Diane,

I am newly diagnosed with RSD and new the the area where I live in NJ. I have had NO luck finding a primary care Dr. who will listen and is interested in helping me piece this together. I have been to neurologists, neuro-surgeous, pyschiatrists, pain management, ............. I leave their offices in pain, begging for help, to no avail. I can't find a single Dr. lead alone a team to work with me. It's been 11 months, I have had no therapy, I feel like I am being lead in circles and I am afraid the longer I wait the more progressive my pain/damage will get.

What types of Dr.s do you see? What are their philosophies? My current pain management guy takes an "anesthesia-based approach." He does nerve blocks, epidorals...but that seems to be about it. I have exhausted my brain to find help. I feel so desperate and I haven't a clue how to begin to find someone I trust that can help lead me in the right direction.

I would appreciate any ideas about types pf Dr.s, their philosophies, drugs, therapies, etc...

I have RSD in my foot/calf/lef from herniated disks/back surgeries.

Thank you!

Quote:

Originally Posted by dlkeil

Hi,
My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink:

nancyinLA · 07-10-2009, 04:33 PM

Quote:

Originally Posted by dlkeil

Hi,
My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink:

i, too, fell at wk in 4/08 & broke left wrist. came out of cast w/RSD. i see a PM dr, psychologist, OT ea. wk, orthoped. - & neurologist, as i have epilepsy, too! the "mess" has crept up my arm 2 shoulder 2 left should. blade! i take 1500mg neurontin, celebrex (hurts 2 type), & all my seizure meds. just saw my foot dr today as i thought my plantar fasc. was acting up...... oh no, he thinks it's worse than that! burning pain & knife pain in foot - all of the left foot. i know my worker's comp is gonna die! i've been blessed, tho. i've been home over yr & receive my salary. my family is great - my husb. is an angel! i know God has a plan 4 me..... i try 2 think every day: if i get up & have a pulse, God has a purpose 4 me that day! hope u hang in there!

DebDog · 05-30-2010, 08:26 PM

Hi Diane, I am new and trying to write this has been a problem. I keep being thrown back to an earlier website. I will try one more time to write you. I do not understand how to manuever and communicate with other members. I have a user name (DebDog) and password that I registered for last night so I am not a visitor. Our story is somewhat similar. I have a 31 year old daughter and live alone. I am divorced and my mom died July 24, 2009. She was always the one who took care of me and believed in me and was always the one who was there for me. I am feeling the grief more than most. I was a supervisor with our local school system and my dr. forced me to retire in Sept. In addition to those changes, I also sold MY house yesterday and have to clean it out. The pain is out of control and everything in my life has changed. My SCS is moving around and is not stable. I am in acute pain with it and continue the chronic pain with the RSD. I have trouble walking and my headaches,etc. are getting worse. Every hair on my head hurts. I am having surgery on June 1st to have the SCS stablized.They are going to find the fatty area b/c I have lost so much weight that I only weigh 112 lbs. and it has affected the stablity of the SCS. Have you lost weight since you dev. RSD? Thanks for sharing your story about your family. It's good to know that other family members do not accept this disease. I don't feel so alone. Deb Dog in Louisiana

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