RSD-The Journey and What it Took From My Family and I. How I Was Able To Start A New Life
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This is how my RSD started..... I went into the hospital in Feb of 2001 to have a hysterectomy. I was 32 and was done having children. I had 3 kids one daughter 14, a son 9, and a son 3. A husband of 16 years and 2 careers an LPN and a nurse in the Army Reserve. Well, surgery went well, but my IV didn't that night. It became infiltrated and that was when they still give Phenergan and Demerol in it. Well, I was given it 3 times while it was infiltrated! Phenergan will kill muscle and nerve tissue when out of the vein! Next morning my arm looked nasty!! Went home and exactly one week later was back in the hospital with a blood clot in that arm from elbow to wrist. Stayed in for a week on Heparin for a week, arm swelled to 2 1/2 times its size! Black and Blue! Well, it healed but the pain never went away! The color of my arm was a mottled color and pain it was unbearable at times! Felt like it was in a fire pit!!! I would sit and just rock on my bed, crying!! About April I was back to work doing what I could do, but I happened to be off this day. I had gotten up to get my husband off to work and it was about 5:45 am and my husband was almost ready to leave. We live about 15 miles from town. I felt this pain down my arm and then this pain in my chest and then I could not breathe! Everything started to get black and I couldn't talk but I stayed awake! I was determined I wasn't going down here! Didn't know what was going on! Was white as a sheet and my husband saw this happen to me and threw me into the truck and drove me to the hospital! Well, that was a joke! They could not get an artillery O2 blood on me, did not do an EKG but did do a Lung Scan. That was it! They sent me home!! Would be told 10 years, later to make the story shorter, that I had, had a widow maker heart attack and needed to be flown to OKC to have my heart either stunted or have surgery of some kind! Because now I have a pacemaker/defib because the lower part of my heart is basically dead. It does not work. Can not be stunted because it has been too long! Have been shocked 2 times! but it took ten years to find out that I had a heart attack!! But back on track. The pain continued in my arm and doctor who treated the blood clot was starting to not believe me that my arm was still hurting! He was thinking I was just wanting the meds! He finally sent me to a Neurologist 6 months after and he instantly Dx me with RSD/CRPS!! Sent me to a pain management doc. Went back to other doc with Dx and showed him and he wasn't going to believe me still until I showed him in a PDR and he turned all red and mad! I ended up having 6 satellite ganglion blocks done in my neck to try and stop or put into remission but it needed to be done around the 4-6 month time frame and I was past it! Mine was already starting to spread to my right side now. My husband did a lot of research and took me to doctors all over. Even went to Lubbock, Tx monthly from northern Oklahoma a 9-hour drive he had down to 7 hours. Did that for over a year! Now it was in my legs and arms. So as of 2010 I had had 2 spinal cord stimulators and was on Oxycodone the max dose daily 3 x a day, Duragesic 75 mcg, a sleeping pill, and an antidepressant, I smoked a pack of cigarettes a day and I had gained 50 lbs also a muscle pill called Zanaflex. Then I had to find a new pain doc because this doc had gotten into trouble. Had also had physicals done every year for 9 years and no one heard the heart murmur! Well, I was sent to the most wonderful doctor in the world who really did save my life!! His name is Dr. John Pittman. He is a general MD but believes in treating the whole body! He looks at everything! All your levels! He found the heart mummer that lead to finding out about the heart attack and then he caught my Kidneys when they shut down and he did what no other so-called Specialist in RSD have been able to do! He has made me PAIN-FREE!! All with one pill!! He said he was going to and we did not believe him!! It is a dual use pill. It is used for Restless Leg Syndrome and Anti Parkinson's Disease. It is called Mirapex. I call it my life saver!! It takes about a month and a half to build up which your doctor has to build you up on slowly. But it is not a narcotic and I no longer take any narcotics! I took myself off them! Please have the help of a doctor to come off any medication. Or to start any medication. I take a 1mg pill 3 x day. It has taken all my pain away. I had lost 30 lbs and I quit smoking! Something I had done since I was 15! Started doing most everything I could do before, but the heart thing kind put a damper on some things. But the RSD symptoms WOW!! Now if I go without the med the RSD symptoms come back. They come back with a vengeance!
It does come in a generic form and is reasonable in price at Walmart. I have had no side effects from it but that is not to say you will not so please check with your doctor. Like I said my doctor is stayed up on this, it blocks the pain signal from the brain to the rest of the body. Please, I just want everyone to at least try it! If it helps someone else I have done what I have set out to do! So there is where I am today! I still have full body RSD and unfortunately, I have gained back some weight of which I have had a bad couple of years nothing to do with my health but to do with our house, our middle son and our granddaughter. But starting to work on that again!! I want to add this because I didn't mention it in my story. I did physical therapy for years and would use their water therapy which helped a lot with movement. I will always remember the first thing my therapist said to me was that with this disease that no matter how bad it hurt I had to keep moving! What You Don't Move You Lose!! This is very true! And you can still be moving and almost still lose the use of extremities. At one point my first knuckles in my fingers started to draw up at night an lock up. In the mornings I would physically have to pop open my fingers to get them moving again!! Hurt like hell!! But I had to!!! They are still working! So that is my story up to this point 8 years on this medication and a total of 18 years with CRPS. I hope this will be of help to others. Gentle hugs fellow Warriors!
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