[ilovemyboys]

I am 33 years old, and was diagnosed with RSD stage 2 about a year and a half ago.. i had tendonitis surgery April 2007, and immediately knew something was wrong. My incision never closed completely-it looked like an open hole in one spot; 2 weeks post op-I came down with a horrible illness (105* fever for a week, they thought I had staff); my incision was yellow/green, and at times was oozing; my hand stayed swollen and the incision area looked red, green etc and was always hot. About 3 weeks post op the DR decided to try PT, OMG, i thought birth was difficult!! i would literally be in tears for the hour i was there, and they would put me in the back room every time.. How terrible to know your going to get "help", and your leaving in horrible pain! 4 months post op, when i couldnt make a fist, and could barely move my fingers, there was mention of "RSD" (which im being told is now CRPS). I was sent to a specialist in Colorado-an amazing DR, who did an all day "test", and was immediately diagnosed. severe RSD oh yeah. what I wasnt told, was how much my life would be altered!! This is my right hand.. yes, other parts of my body are/have been affected. i am/do get depressed. BUT, i have other issues. From a previous work comp injury, i suffer from migraine seizure disorder-so medications are an issue and from this injury, i was "lucky" enough to develop IBS (from all the medication) as well. So this journey has been soo much fun! NOT!. when i had the surgery, my youngest had just turned 1- my oldest was 10.. it has been life altering for all. I have no use of my right hand, and on top of it.. I now have tendonitis and cysts in my left hand. Work comp is not a fun journey, but in some ways i am blessed? i could go on and on, but those that have RSD already know what fun living, living with this is. But, i look at it as- Im living. I get to watch my kids grow up (not the way i intended.. but im doing it), I get to enjoy their sports, from the sidelines.. their school events. Im not as much of a participant in life as i wouldve been, but im here. God willing!!So, ill take what i can get.. if anyone has words of wisdom, or needs a pick me up. im here!

[reruho]

Dear Ilovemyboys,

I am very sorrow to welcome you to our group. This monster has a way of wrecking our lives. I feel that it is an injustice to patients not to have this disease explained to them. I have never had a doctor take the time to dicuss what the future held for me or any aspect of this disease. I have gained all my knowledge from reading and from my forums.

I had a surgeon (one I went to for another problem) tell me he thought I had RSD and to look it up. I asked the ortho, that was providing care for my broken wrist, directly, "Could this be RSD?" He said yes and shipped me off to Pain Management. My first PM did not talk much and I was so full of questions, which I know annoyed him. He once told me I knew more about RSD than most doctors, that did not make me feel any better.

I think your PT treatment was barbaric, cruel and inhumane. They would have complained to the high heavens if these medical people were subjected to such torture. One of the first rules of RSD treatment I learned was- NO PAIN IS ALL GAIN.

My advice to you is do some reading and more reading and more reading. You must educate yourself to protect yourself from these monsters that have been giving you treatment. My old primary told me to become an expert on any condition I had to protect myself because doctor can't know everything. This has protected me several times. I have had to fire doctors but I did not let them do the wrong thing to me.

I put together a health notebook with copies of everything from my doctors in one place. It has been helpful for me. I have a log of my doctor appointments. I have a log of tests and procedures. I also started a log of medications with start/stop dates and any side effects. I am working everything into a electronic form that I can put on a thumb drive.

I am 20 years older than you but I still have a 14 year old boy at home. He doesn't understand everything but he tries to.

Continue to post. we will try to help you as much as we can and sometimes if you never to vent, we understand completely. I wish you sweet dreams and low pain night.

Reta

[ilovemyboys]

THANK YOU!! its very nice to find an "outlet." i never would have thought about a place to keep a log of appt's, meds etc. i will get to work on that right away!! that is great advice.. i have been looking for a new brace, as i said my hand is not in use, and i have a brace that was molded to me, but since my PT was stopped, i am not sure if he will continue to do my straps etc.. but other than that challenge- im hangin in there! thank you for your reply! its just great that there is someone out there.. somewhere! that can relate. im in a smaller town, so finding DRs is a pain (no pun intended).. but this will help soooo much! peace, painless days and smiles to you!

[reruho]

I live in a very large city, so finding medical treatment or doctors is not a problem. I have 3 hospitals within 10 miles of my home.

I was glad that I could be of some help. I remember when I found this site it was a relief to know there are others like me that understand what is going on. I can not imagine life without the internet. I think I would have lost it without this ability to reach out to others like me.

I started my health notebook with a 3 ring binder and those plastic page protectors. I used Excel to develop my logs.

It is raining here again and there tornado warnings for a couple of county south of us. I am so tired of the rain, it has rained so much this winter.

Reta

[ilovemyboys]

yes, the internet is a godsend!! and yes, the weather is a curse!! i can always tell when a storm is coming- i dont need to watch the weather :) life is full of adventures, i never thought i would have one like this. BUT.. i take the good and the bad. i learn, and i cry. thank god i have my boys!! and now, i will meet new "friends" and thank god for that. maybe my husband will read some stories and understand a little.. what a life huh?? i wish you days of less pain..

[reruho]

I think is very hard for a spouse to accept that their loved has been crippled by a mysterious disease that has no rhyme or reason. I still do not know how much my husband knows. He is supportive of me and tries to be understanding.
Reta

[4hope]

I read your post about having a good Colorado dr. I'm going in to a specialist to determine if I have RSD, but I already know it's true. I'm 6 months out from a total knee replacement, and life is HELL! I've come to a point where I don't trust the doctors, and would really appreciate knowing a great dr. that another RSD surviver has used. Compassion and understanding are in short supply, it seems. I could use a lot of both. Please respond with the name, number, and location of any Colorado doctors that are RSD friendly.
4hope in Johnstown