hi Im Janice ,i here everyone winces have had rsds since 1992 , heres the wincing part i have had a below knee amputation and thanks to fenzian treatment my scars healing well, and the rsds is not showing its ugly head again. Has anyone tried fenzian i hear theres a doc that practices it I have been lucky my surgeon recommended fenzian but it takes quite a while for the body to reajust. Deppression b4 and at times now are my worst enemy .Learning to walk on a new leg is very tough as the gait pattern is not great Im 5 months down track now had my leg for 6 weeks. It was my decision i knew the odds and had my fingers crossed with hope

Did I understand correctly, you had your lower leg removed because of RSD??? If I misunderstood, I apologize ahead of time. And usually I am not so blatantly rude *LOL*

Either way, good luck. I did go read about Fenzian & it even states it is used for RSD & even Fibromyalgia, both of which I have. I imagine it is expensive huh? And probably not something that insurance pays for? And no I am not WC.

I only have Medicare & MediCal so am doubtful either one would pay for one of those. Damn it.............

DebbyV

you heard right i had rsds in my left ankle it wasnt the pain it was the mobility i wanted back. I had three ankle fusions. I live in nz so as this was an accident i was covered under a system that is far different to u guys everyone in new zealand is entitled to medical and social help not an easy road. I have 2 sons and have been divorced for 8 years. My kids are 21 and 20 i left him and took the boys they both had adhd so life was a battle. anyway to cut a long story short after the insisted counselling and pain clinics I was finally given the choiceto make the decision in my eyes either way my body was poked sadly its got a long way to go but the exciting thing is I CAN WALK and fenzian has given me my life back i was crps worst case scenario and have been for 16 years. getting around meant crawling as my back was too weak to do crutches and i wasnt allowed a wheelchair because quote i could walk a few steps. My boys have lived with me having breaks in hospital all their lives and people caant believe its me when they see me. i had a fall on my tail bone so sitting wasnt an option my knees couldnt take the strain, deppression nearly cost me my life no joking istill laugh at the words accidental od how was it an accident. anyway im doing well have the odd panic attacks at the limb centre lot of gait training to do and me being a behind the scenes person hence the panic attacks i was a kitchenhand b4. it wasnt only the rsds my family life had bad experiences. i want to know more about you and hows tricks ups and downs and kids and husbands and animals . also allabout your health issues and how you are supported and stuff thanks for answering i know ive shocked a few people it was an individual decision and i was lucky my rsd never spread anywhere else.

gosh i wish i could email u u sound really neat icould explain so much we dont have private insuranse companies we do but also a public system in new zealand that allows every nz person access totreat an injury

I dont' get on the computer too much anymore. The 3 little boys in the picture are my 3 grandsons who are now age 7, 6 & 2.5 yrs old. I really need to update that picutre *LOL*

I just had not heard of anyone who opted for amputation for RSD. I had read about it at web sites on RSD, but that usually it doesn't work often for pain control. I am really glad that it did work for you tho.

Good luck.

Debby

Hi there and welcome !

I am so sorry to hear that you had to choose that option , but I have the utmost respect for you ! It must of been a hard decision to make. But you sound like a very strong person and I am sure that you will get thru all of this. Just keep in mind, the harder you work the bigger the pay off !

I was diagnosed with RSD last year , I also have TOS. The RSD has been terrible. It started in my right shoulder , the shoulder is frozen at the moment and I now believe it has spread to my right foot. Because all of a sudden in the last 3 weeks I have developed excruciating pain and I have seen a podiatrist and I have Planter faciitis, Tarsal Tunnel syndrome and the right foot is turning inward ?! So I am sure I know how painful it was.

I wish you the best and hang in there !

Dolfinz

Hi and glad you have joined us. I also have rsd in both feet/legs, and I know what you mean about being able to get around. After almost 5 years in bed or a wheelchair, I was able to get an SCS (spinal cord stimulator) implanted in my spine. It has helped so much. I am going to have the battery moved from my butt to my belly. That will be the end of Sept. My daughter is getting married Sept 25th, and I have to be up and ready to party. for my birthday next month, I want a 3 step mounting block so I can get back on my horses. I think once they move the battery to my belly, I won't be so concerned about falling off and hurting my butt.

I can only think how hard the decision was that you made. it does sound like have are doing great now. It know what you mean about the gait being different. My uncle lost first one leg then the other to being diabetic. That was many years ago tho. If he was still with us, he would be about 94. (it was smoking that got the better of him tho).

Hugs
Mary

Mary,
I think I would still be concerned of falling off & having the leads knocked loose or out of place. Hopefully you are a great rider & your horse doesn't shy easily. That is the only time I have ever took a major spill was when my horse shied on me once. After that I was always ready for him to do it. He didn't shy all that easily actually but I was better prepared after that. *LOL* This was when I was kid too, teenager actually. Haven't really ridden since then & am no longer young woman.

DebbyV