The Short Version of “My RSD/CRPSII Journey”


Photo Sep 13, 6 45 57 PMHello Luvs, This is just an updated version of a Facebook note from about 5 or 6 years ago. I wanted to just update the info a little and my age etc.  I don’t think I’d ever written just a short and simple version of my RSD/CRPSII  journey. I’ve written about other things and ailments  and such….but this is just a re-copy of a simple note from an old Facebook page of mine. So here it is and I’m just sharing it with you. …Now, remember…it’s not a well written or even well planned out or well thought about “blog ” post, but just a Facebook note from ages ago. I only wanted to share because I just realized that some people don’t really know how I got the RSD/CRPSII.  So here you go…I hope it’s not too boring..

My name is Suzanne and I am 52 years old. I have written other “notes” before but they all included other things that have happened to me in my lifetime and not “just” the RSD/CRPS  journey. I thought I would just write a note about my journey with RSD/CRPS and not any of the other things going on medically or regarding the horrible car accident that I was in when a man ran a red light on August 11,2002. The accident changed my life completely so I do have to give an introduction about it and then I’ll stick to the RSD/CRPSII.                                                                                                                    I’ve had 12 surgeries & suffered an MTBI with brain injury rehab for 3 yrs, Worsened Dysautonomia/POTS/NCS with a pacemaker.  I’ve got:  nerve damage, degenerative disc disease, leg braces/AFO’s.  I was in wheelchair then walker and now I usually use a cane but still keep the wheelchair always with us in the car. I have a motorized scooter for long distances…Oh there is so much more..I just wanted to give you a little insight is to the things that were bad enough and then in 2007, April; I had surgery on my right foot. It was going to be my last surgery for awhile and then in June 2007 after it wouldn’t stop hurting, burning and burning and being “on fire” and being “purple” and “hot” etc…I got the “news” from the foot surgeon that did the surgery. She told me I had RSD/CRPS or “Reflex sympathetic dystrophy”. I hadn’t ever heard of it before. She offered me “lyrica” and some lidoderm patches. I couldn’t take the Lyrica but I did try the patches, they didn’t work at all. I was already on mega pain medication from the chronic pain from the car accident in 2002. The pain Dr already had tried everything on me BEFORE I even got the RSD! He wanted me to get an intrathecal pain pump. They set up an appointment with my husband and I and talked about all of it with us. I decided that although I didn’t really want another piece of metal (as big as a hockey puck and I’m only a tiny woman), bigger than my pacemaker and I had screws in my shoulder already also. I would let them set up the pump “trials” just to see if it would work. I am always willing to try things to make sure I’ve exhausted all options.

The night before the pump trials, the Insurace company called and ….well, no …wait…actually the pain Dr’s office called and told me the auto insurance company called them and denied the pump totally! They said they no longer could help me because they’ve tried everything they could. Now remember this was BEFORE I ever got the RSD! So the pain Dr did continue for awhile to call my GP and they’d discuss pain meds and what I should do and finally I just let my GP be the “eye in the middle of the storm” for me. He’s helped me so much and I owe him for that, he is a wonderful GP. Soooo…then came that day in June 2007 when I was given the diagnosis of “RSD” along with the lidoderm patch’s and sent on my way! I had no idea what RSD was and didnt have a clue at all and she didn’t tell me either. I decided NOT to look it up online because whenever I used to do that, I would get scared and make myself worry and so I just didnt do anything for awhile. The pain in my foot got worse and redder and more purple and it was as if someone poured gasoline on my foot and set me on fire! I put an ice pad, a soft pad that is cold from physical therapy on it and wrapped it in that sometimes. I swear I could almost hear a “ssssssstttttt”  or sizzling sound coming from the cold hitting the heat! It did help a bit and then I found out that you are not supposed to use “ice” for RSD or it can spread or make it worse. Well, I don’t consider this “ice” but just a cold pad, so I used it and I still do.

Then I went back a few months later crying to the GP and crying to the foot surgeon so they sent me to a foot/ankle orthopedic DR. He came into the room and I already had my socks and shoes off. He said first thing to me “This is classic RSD on your right foot”! Oh my gosh!!! How did he do that? So he also noticed that my foot drop was worse and I got ordered prescriptions for 2 foot/ankle orthotic braces or “AFO’s” to help my foot not drag. They also got me some different than the ones I wore the first few years after the car accident. These ones didn’t touch the top of my foot which was essential due to the pain!2012-12-19 00.40.32-1

I then had an appointment with a Neurologist and a Rheumatologist for other reasons and then they told me that I had “RSD or CRPS” also! So I had several Dr’s tell me that I have it and the foot/ankle orthopedic Dr did give me a brochure or a copy of some written material on RSD and it blew my mind! As time went on, I started noticing my other foot was turning purple, burning too. Not quite as bad as the other and not 100% of the time, but if I walked any amount of time, it would be so awful later on that day or evening. Then the left knee that I had surgery in prior to the diagnosis of RSD, but due to injuries from that car accident; then it started to burn and swell and turn purple! I didn’t know what was going on and at the same time, I had gotten somehow an infection of some sort in my mouth and then the RSD went to my mouth and now i have to be careful when it flares and I have prescription toothpaste and trays for my teeth made special for me . The dentist made these and i put flouride gel in them for 5 mins each time (supposed to be twice a day but I cant do that so i do it when i can) and it helps my teeth not decay b/c I have a hard time brushing even though I still do anyways. The RSD has since gone to my upper back and no one can rub it or when I shower it feels like bullets pelting my back and the nice,soft towel feels like sandpaper! Then the worst part besides the right foot being the worst part, was this past April 2009. One evening my head hit the desk soooo hard that it felt as if someone had come up behind me and pushed it down as hard as possible onto the desk. I didnt actually “feel” a person or a hand or anything, but my head just went “plunk” down onto the desk. I started to cry because it hurt more than anything. I was terribly bruised, black eye and huge bump. I am on Coumadin already (a blood thinner for a problem with my heart called “atrial fibrillation) so it bruised something awful and hurt even worse than it looked. Since that day things started a downward spiral again. My eye on the right side won’t blink but 20% and the left only 80%. MY eyes look very strange when looking at me when I’m talking now because one eye blinks and the other one doesn’t. I have certain days where the eye(s) flare up and get all swollen and red and hurt and burn and stab with pain. The pain in my eyes (right worse) is very strong and burns, burns, burns!! Guess what? I have been to an Opthymologist, neurologist again, my GP and now they’re sending me to a Neuro-Opthymologist next week. The first three Dr’s seem to agree with me ,that RSD has now spread to my eyes. Though the new neurologist told me that “RSD spreads very rarely..hmmm” ..I’m not sure where he got that from , but I’ve done my own research and it does spread 70% of the time according to the things that I have read and the people i know who have it! Now I’m getting sores on my lower legs that won’t heal and finding out that is also part of RSD. I have ulcers on my right foot that won’t heal and I have cream after cream to soothe it for 5 minutes,but that’s about it.

I have a great GP and I am on a moderately good pain regiment now. I have good days and bad days. I have lost so much I lost my cousin who used to go with me to breakfast and shopping and things. After the car accident she said to me :”I can’t see you anymore”….I asked her “why not? what did I do?”…she said “seeing you in pain like this makes me sad, when I’m sad it brings me down and when I’m down it brings my family down so I cant see you anymore”….I’ve run into her at a few family outings and funerals. I’ve tried to “apologize” for whatever I don’t even know what I did?? I tried to email and talk to her. She still won’t talk to me to this day and I never ever said or did anything to her ever that was not kind.

So there you have it..this is my journey with RSD/CRPS. I had to mention the car accident because it does have its place with all of this. I got a Traumatic brain injury and something called “Dysautonamia” from the car accident/brain injury. I also found out that a large percentage of people who have RSD , also have “Dysautonamia”. It is when your Autonamic nervous system shuts down and doesn’t work anymore. It includes : memory,vision, heart rate/blood pressure, gut, motility, many other bodily functions! I had to see a Neuro-Cardiologist, a world renowned Dr in Toledo,OH at the University of Toledo Medical Center and had to get a pacemaker etc…

I’m very lucky to have a wonderful team of Dr’s and a wonderful husband,Craig, of 17 years now.  It’s not the quantity of people in your life that matters, but the quality. I have a great GP and some others. But I have the kindest, most loving husband who is gentle and helpful and wonderful.  I am blessed to have him and some dear friends that are always as near as a phone call. We just had a beautiful wedding for my youngest daughter and I had a bridal shower for her and she married a really nice guy. They are so cute together. They are busy and live an hour and half away, but they have their young lives to live right now.. I pray for the day that my other daughter & I can be mended in our hearts and be even better than what we once had been!. She has never left my mind, my heart or my soul for a moment!

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