Hi All~
I look forward to meeting many new friends here, as I now realize I have put off joining a group forum like this for way to long. I fell and broke my left patella(knee cap) Oct of 2001, had burning pains in knee that far exceeded any torn miniscus or other. I knew this from having miniscus surgery on right knee in high school and this was nothing close to the same.
From here, I was passed over by my doctor saying it was just arthritis, said she saw nothing in the x-rays, and being the stubborn Irish gal I am, I would not except this and said I want to be referred on to orthoped! From there, he was angry at the fact this doctor let me walk around untreated with two fractures in my knee for months...
Next, Mri's done to check for soft tissue damages as well, which there was(I had a 3 in mass of tissue ripped off floating around behind cap and torn up cartalidge, so he said this would of course require that ol' scoping surgery many of us are so familiar with.
Problem with this, by the time 1st surgery time came my leg was totally on fire. After this was done the pain got even worse? He was really getting puzzled at this point since he knew he cleaned up all damaged areas and fracture should be pretty well healed by then! He said we can take one more look in there Traci but I dont think we will find anything, if we do we'll fix it ie; re tears, etc. So, on with #2! Right before they wheel me in for surgery he brings in the anthstegs. with him into my waiting room and pulls back my sheet and said let us take one last look at that leg. My leg now was purple and blue? It was known to do this often now, go red to blue to purple. Then they said were going to do an epideral on you for extra pain just incase?
I had no clue why at this point, I had never heard of ever having to have this much numbing done for a scope. So they go in, then bring me out. Found nothing. But in his own words said "We know she has what they call AN ANGRY KNEE" and he then was confident to say she has what they call RSD! They could'nt give me enough injections to take the pain away after this stupid scoping last time around! It was a nightmare. I think I used up there years supply of fentenol and vicodins.
Nearly 8 years later, hear I am. with many more stories, treatments to tell, experience under toe to hopefully help others just starting out! I know there are many out there worse than I but each of us are hurting beyound what any living thing should have to, thats all I know. And, I believe my new theory to be a very strong one! Labratories and testings are great, but if the rats don't talk back you might as well throw away the beakers! So, with that being said, I will leave you all for now, but must say I believe the strongest weapons we carry is our daily experiences... We have to learn to make our doctors and loved ones listen to us, but do it a fair and honest fashion. Don't hold back some of the real things we are feeling but are afraid to tell anyone, quit feeling like you can't tell your doctor all your symptoms each and every visist! You must! Because they change constantly from visit to visit. Keep a journal log, date it daily, write the pains and problems you experience. Then take the collected data to your doctors/specialists and they will make copies for your medical file! Take pictures of your color changes, skin rashes, blisters, etc., as these also come and go and doctors can not possibly catch this all the time. I tell you this because my story has many professionals who claim to know what they are doing, or call themselves doctors but are themselves just as puzzled as we are about the whole thing! At the same time they naturally/not intentionally always tend to think that such a major, multi-symptomatic, complex disease must be somewhat made up at times or added to, exhagerrated whatever you want to call it. Remember they are also just men and women and could get RSD just as easily as we did and hopefully never will.
In the mean time, peace out to all of you and anyone who has a loved one or family member serving in the military for us. Tell them I say "Thank you for Their bravory".
What they do every day is probably the most inspiring thing I could ever ask to see in action as far as endurance and strength goes. And when I can't get out of bed some days and wish I could just (pardon me for saying this) shoot my leg off because the bone pain and spasams are so unbearable and theres nothing I can do to make my leg and foot get warm... I think of how our men and women over in the middle east don't have beds to sleep in a lot of nights, and no showers to soak in, no computer access, no phones, cleaneness(you can throw that one out the window) they can't take showers either. If they get hurt they make do, and they don't get to come home for who knows how long... And to top it off, no matter what skeptics think or say over here, they belive in a cause! And they will fight to the end for it! This last part of my message was meant to inspire us not discourage us. People like this can be the best examples of "Love in Action" "Hero's" "Strong&Meek" "Humble". This is how we need to be in our battle for our lives again! We love our lives in action and want them that way! It takes strength and meekness to walk in enduring times. Yet we must remain humble to all others in pain no matter how high our disease ranks on the "MCGILL PAIN SCALE" at a whopping 47! (all other pains well below RSD-thus RSD being still recorded as the most painful disease to date!
So, remember, when your feeling whipped and beat. Dont forget you are taking on one of the biggest physical challenges you ever possible could in your life and your doing it! Others are watching us, and those who are also finding out they have it and who have it and don't yet know how to identify it need people like us to make everyone aware of this problem that does'nt seem to be going away for now.
However, I must say the newest "hyperbaric chamber" treatments do look most impressive along with the sucess rates!
I warned everyone, I talk to much!
and this was my quick response...(hee hee hee)
God Bless all you fellow heros and tough guys and gals out there!
Traci