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i'm so done!!
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i'm so done!!

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I'm suffering from RSD and can have ANY pill I want. I trusted my dr. to "do no harm."
well now i'm on the same level of meds as a stage 4 cancer patient, my teeth are falling out and my bones are like straw from the meds leaching the calcum out. (did i happen to mention that i'm 39?)
last year i tripped and fell, not big, just a simple trip over the edge of my carpet. i stuck my hand out to break my fall. i completely shattered the ball and socked joint in my elbow. nothing was left. after 2 surgeries i have 10% usage in that arm.
when i was first diagnosed, i was scared and everything moved so fast. by the time i knew i had ANY other option...i'm sure you can figure out the rest. i was never told that any of these things could and will happen to me.
RSD has no cure and it's nickname is the suscide disease because the pain is unbearable. so what do i do? i don't want to take these meds anymore but when i cut back my *** ends up back in the hospital. so what, i go to my grave with this crap in my body, poping pills and watching my body fall apart. i'm at the end of my rope.
5 Comments Post a Comment
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4522800_tn?1405696702
Hi and welcome..I feel for you....I just wanted to say it is late and slow here and Welcome you did come to a good place..I have been clean 6m today and have read on this site many, many blessing...This one is a tuff one for me so I am going to leave it to the ones with more time or more knowledge...When they roll in..I will be back to put in the input. I have some pain issues but I try to stay with the natural things. So be that said I will be back. Just keep checking your same post and they will be up.
Hang tight Ok..... LOTS of great experience here......
Bless you
vickie
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1700643_tn?1348985292
Welcome.WHAT A AWFUL DISEASE(horrible nickname gosh).What r u taking,how often,for how long etc?I believe u do have options by the way.Have u spoken2ur prescribing doctor abouf all this?if not do so immediately.If u have&they did nothing/didnt seem2care find a new physician.Do u c a specialist4this disease.If not I would search for one.Ive NEVER heard of this so I cnt offer too much n the way of advice specifically.Im sry.I am curious though for the knowledge.I get u have constant pain&w/o meds(and no alternatives offered)u would have NO quality of life although sounds misreable now.Curious why ur r so physically fragile,why ur teeth r n bad shape etc.IS IT FROM THE DISEASE OR THE MEDS FOR PAIN??
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Avatar_n_tn
I am so very sorry for all of the pain you are going through. RSD was first diagnosed during the Civil War. Even after that amount of time, there are still many health care providers who have no idea what it is and how to treat it. I had to leave IN and move back to FL to get treatment. Literally, no one in Indianapolis and the surrounding cities treated RSD.
And yes to all of you out there, she is correct about her teeth.  The lack of blood flow to the head causes problems with our teeth and bones. I was waiting in a treatment room years ago and saw a woman I knew from three months before. This time, she had lost most of her teeth. This disease is insidious! I recall last summer after I had four days of ketamine treatments, my neighbor told me she hoped I got over my "rash" soon. I find it best to say as little as possible in most instances. If someone asks me how I am, I tell them "Unbelievable!"  Twelve years ago, I just decided one day I was tired of taking so many pills a day and quit cold turkey. After loosing over forty pounds I swore I would deal with the pain and be able to think clearly as to go through that again. That was then. Now five years hence, I am suffering from a car accident and learned that some form of pain control is important to break the pain cycle to the brain. I take 200 mg of Ultram and 100 mg of Savella for pain. As well as two 500 mg Tylenol. Am I pain free? No but going to the pool and swimming laps will build your core muscles and give you strength throughout your body. Laugh often. Smile at every chance. God make the body to take care of itself. A hundred years ago there was no one was taking all of these drugs. Now the brain gets addicted and on the circle goes.  Pursue a hobby that takes concentration. That will give your brain less time to focus on the pain it feels. Stay as stress free as possible. Put on some relaxing music and praise God for another day. I had a classmate that lost a leg in an accident last summer.  Another has Huntington's disease. How grateful I am that RSD won't last forever. Praying that you have better days.
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Avatar_f_tn
Hello, I too have RSD. I have had it since 2003. I have been on numerous meds, I have had 3 stellite  ganglion blocks, 2 pain pumps, alot of therapy, including water therapy. Then all of the sudden when I thought my world was ending from being in pain 24 hrs a day I did some research. And low and behold I found Ketamine infusions. ( NOT the coma type) So I went to my pain doctor and asked alot of questions. He told me that I mite very well go into remission. The day I headed to Cleveland Clinic to talk to the pain doctor there he also said I it mite put me in remission. I had 5 day infusion, meaning I had to go in everyday for 5 days and spent 8 hours of my day having an IV in my arm. It wasnt bad at all...It put me in remission ..I not have NO pain and Im off all 13 of my meds that I had to take forever. I go back every year for a set of 5 again to keep me in remission. Maybe you should talk to your doctor to see if they offer the 5 day infusions? If anything it will help alot with your pain if it doesnt put you in remission. Good luck!
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Avatar_f_tn
I also feel the same way, when I was in all that pain just from a sprain and strain from my wrist, I did alot of things that I could do just to get the brain off of the pain. My family made me laugh alot of times. I would not have gotten threw all of it without them. I swear by the Ketamine treatments. I sure hope everyone with RSD can seek help and hopefully get the treatments that is right for them and feel better like we do.
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