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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#11 | ||
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Junior Member
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hopeful. Lucky853 |
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"Thanks for this!" says: | ginnie (07-07-2012) |
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#12 | ||
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Junior Member
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Quote:
Lucky853 |
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"Thanks for this!" says: | ginnie (07-07-2012) |
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#13 | ||
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New Member
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just browsing thro and lots of good people here with good advise.. feeling less alone already..thankyou all ..
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#14 | ||
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Junior Member
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"Thanks for this!" says: | ginnie (07-07-2012) |
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#15 | ||
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Elder
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I have not tried that therapy. I will bring it up to my doctor on the 17th. I really hate this pain in the ankle and foot, it is driving me nuts. I walk around and ouch all day long. I am sorry all of us have to go through this. I am taking the same meds. that I did for my spinal fusion, and nothing really extra for the RSD. Tried Neruontin, and could not stand it. I got so depressed, that it was leading me down a dark dark road I didn't want to go down. So I quit that. I wonder what the doc is going to say. Let me know how you are doing lucky, and all of you who suffer with this RSD. All I had was ankle trouble, removal of cysts, and then this happened. I don't understand this RSD, and why it happens. ginnie
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#16 | ||
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Junior Member
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God bless the folks who run this site first off.
Hi friend, just don't know where to start so, I will say to try the unit, see what ot does. RSD is all electrical anyway, we are made up of electric. Tens units were just a short lived mental and pysical bandage for me. This may be old info for you as I am just learning how to get around here. I have lived with RSD for 21 years now. Done it all....except implant pump,Ketomine come, and spinal cord stimulator. I have started support groups from Fl. to North Pole alaska and have met thousands of Rsd folks thru the years. 16 of those years were spent fighting a workers comp battle over RSD be real and me having it. Sure had to do my home work because the lawyers needed to be educated as well as the doctors. I live in Daytona now, and forming another local RSD group in October. Please get back if you have any questions, I always have an ear or a shoulder open for an RSD friend or their loved ones. God keep you in His hands. Peace & LUV, Andrea ![]() |
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"Thanks for this!" says: | ginnie (08-30-2012) |
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#17 | ||
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Junior Member
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Hi Lucky, hope this finds you having an easy night. Just saying hi, I am new here too. I do however have 21 years behind me with RSD stemming from a simple ankle sprain.
I send you smiles tonight from Daytona Fl. I would be grateful to share war stories with you anytime and always have an ear and a shoulder if ya need it. Have to hit the hay now however. Talk soon and Dos bless n keep you strong. RSD with LUV, Andrea ![]() |
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"Thanks for this!" says: | ginnie (08-30-2012) |
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#18 | ||
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Junior Member
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Thanks for the reply. I will keep ya in my prayers. A.
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"Thanks for this!" says: | ginnie (08-30-2012) |
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#19 | ||
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Junior Member
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[QUOTE=ouellem;839041]Your story sounds so much like mine. My original injury in my foot was in December of 2008. It took 10 months and all of the remedies that you tried to get a diagnosis. After a year and 5 successful sympathetic blocks I agreed to the stimulator trial. It works! I had the permanent surgery within 5 days of trial.
My pain has drastically decreased and I only need to use it when i have a bad day. I would definitely recommend it to anyone. I used ANS which is now St Jude medical. I would be happy to answer any questions that you have. Oh, and avoid ice. Terrible idea and makes your RSD worse.[/QUOTe Hello friend, so very happy to hear this news. Oh Yeah, Ice is torture... They have come a ways with the stimulators and it does make allot of sence to me. The problem is an electrical one to start with. God bless and keep you strong. Peace & LUV, Andrea RSD form MARS with L.U.V. Lending Unity for Victory. ![]() This is a wonderful thing and wish you much sucess and a full life. |
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"Thanks for this!" says: | ginnie (08-30-2012) |
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#20 | ||
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Junior Member
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Hi Lucky, Sure want to keep calling you that....
Think about a 48 oz bottle. If ya tie it up in the middle and put 57 oz.s in it what will it do? Think it might hurt that bottle? Even make it explode? The South Carolina group introduced me to Beir Blocks, The doctor they all went to was wonderful and some folks had some releif. Good group if you want to explore. However, having a foot issue myself I could not tolerate this and did it only because the law said I had to. It was not a good thing in my opinion. It only made things worse and put me out of commision for weeks afterwards. My foot just hurts looking at it, I stopped doing anything of this nature. If it were my call--I would ask your doctor the sucess rate of this treatment before you do anything. 10 %--50%--And how many times has he done this proceedure? You are aloud to ask questions. And you are aloud to say NO. It is your body and you have rights. Keep notes for yourself. Daily of this is different, this is weird, this pill did this, simple things and reveiw them. Make lists for your doctor when you go to see him and take your journal. It may help him see something he didn;t think of. You have to stay in control. Go in there with some backup so you are not jumping all over the place when you only get 10 minutes to talk. And you may be surprised how differently the doctors treat you as a person when they see that you are on top of things. Some are just money makers, so do your homework. Have you researched this Beir proceedure online? You have to do the homework and do not let any one talk you into anything. A knowledgeable doc will tell you these facts. A caring doc will help you with the right decision for you. RSD is a money maker so beware. I would not rush into to this...find some facts first and think about the Bottle. Allot of treatment desicions are based on common sence. You don't have to be a rocket scienentist to see that a 48 oz. container does not hold 57oz. especially tied in the middle. Dahhh..It may do more harm than good. Have they done nerve conduction tests to determine anything in that area? That is when they stick needles in your affected area and hit it with electric shocks....to determine which nerves are affected. This is inhumain in my opinion. Had ONE, flew off the table with clinched fists and walked out. No one should have to have that done to an RSD body part. Matter of fact no one should have to endure such torchure this day and age. As for your pain, be good to yourself. Lay down if you need to, scream if you have to, and cry when it is just too much to bear. You are human and your tearducts were designed to help cleanse your head and your heart. Laughter is the most healing tool for me. I Have a picture of laughter endorphines being produced by the brain when laughing. They look like pretty fireworks just dancing and gleaming all around. Use what ya have to try and make it thru the day. Hope to hear back and hope this has helped you know that you are in control. You have to do the homework however. And ask for God's guideance and wisdom. God bless you and keep you strong. Peace & LUV, Andrea ![]() RSD from Mars with Luv. Lending Unity for Victory. Thank you for giving me such a comprensive response. I hope mine does not spread, I am not sure if I have any control over that. I am switching PTs, seems like they all say they know how to work with CPRS, but they do not! Weird the exercises have increased my flexibility, but not reduced the pain. Mayb that is an unrealistic expectation. My doctor is now recommending Bier injections, they use a turnaqu?et on my leg and it stops the blood from flowing to the foot. Then they fill the foot with lidocaine for 20-45 minutes, depending on how much one can tolerate the turniquate pain. Any experience with this treatment? Your kindness is so valuable for me. Thank you. Lucky853[/QUOTE] |
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"Thanks for this!" says: | ginnie (08-30-2012) |
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