[AshFreeze]

It has been a while since I entered and RSD chatroom. I have had RSD for 20+ years, after a orthotist made my orthotic incorrectly. I have begun giving up on conventional medicine for RSD support and now looking more towards more natural and homeopathic treatments. I have become very frustrated with the constant answers of "I dont think I can help you" or "Its all in your mind". It is not like the doctors dont know what RSD is but they just cant grasp the concept of it and how to treat it without causing more damage.

After 50 different nerve blocks, a round of manatol treatments, and trying several medications, nothings has really worked.

Aways glad to be back in a chatroom and hopefully I can pass along some of my knowledge and experience to others.

[ali12]

Hello and Welcome to Neurotalk, AshFreeze!!! You will meet many great people here who I am sure will be more than happy to help you in any way they possibly can!!

I'm so sorry to hear that you have RSD also and that you have suffered from it for such a long time ! I can't imagine having to deal with this disease for that long so I give you a lot of credit - not many people would be as brave as you!

I also suffer from RSD. I have it in my left leg and right arm - I developed it when I was 12 years old after an ankle sprain and I am now 14. Like you, I have tried many medications and treatments and nothing has helped that much so far. The only med that offers me some pain relief is Ketamine but my Pain Management Doctor doesn't like me taking it because he feels that it could cause some serious damage in later life.

Have you tried HBOT? I have heard from a few people on this forum that have had it and have had some positive results so that might be something worth looking into. I mentioned it to my PM Doctor a few months ago but he said that he didn't think it would work in my case - for what reason, I don't know! Also my Doctor suggested that I take Vitamin C on a daily basis as that can stop further disease occuring such as Osteoperosis so that might be worth looking into if you aren't already on it also.

If you have any questions, please don't hesitate to ask - I am more than happy to help you if I can as I DO understand some of what you are going through!!

Take care of yourself and I hope to see you around the forum more soon!

[angelrsd]

hi ash
welcome glad to see you. im sorry that you have had so many problems with the rsd. im gald that you found the new forum hope to talk soon
carrie

[AshFreeze]

Originally Posted by ali12

Hello and Welcome to Neurotalk, AshFreeze!!! You will meet many great people here who I am sure will be more than happy to help you in any way they possibly can!!

I'm so sorry to hear that you have RSD also and that you have suffered from it for such a long time ! I can't imagine having to deal with this disease for that long so I give you a lot of credit - not many people would be as brave as you!

I also suffer from RSD. I have it in my left leg and right arm - I developed it when I was 12 years old after an ankle sprain and I am now 14. Like you, I have tried many medications and treatments and nothing has helped that much so far. The only med that offers me some pain relief is Ketamine but my Pain Management Doctor doesn't like me taking it because he feels that it could cause some serious damage in later life.

Have you tried HBOT? I have heard from a few people on this forum that have had it and have had some positive results so that might be something worth looking into. I mentioned it to my PM Doctor a few months ago but he said that he didn't think it would work in my case - for what reason, I don't know! Also my Doctor suggested that I take Vitamin C on a daily basis as that can stop further disease occuring such as Osteoperosis so that might be worth looking into if you aren't already on it also.

If you have any questions, please don't hesitate to ask - I am more than happy to help you if I can as I DO understand some of what you are going through!!

Take care of yourself and I hope to see you around the forum more soon!

I remember when I was your age and just starting to understand this condition. Doctors had few answers for me and spend many years with no help. I also take vitamin C. Have you heard of Buffered Vitamin C powder?
Thanks for the offer, I think with all of us RSD putting our heads together we can all help understand this condition.

[Dubious]

Originally Posted by AshFreeze

It has been a while since I entered and RSD chatroom. I have had RSD for 20+ years, after a orthotist made my orthotic incorrectly. I have begun giving up on conventional medicine for RSD support and now looking more towards more natural and homeopathic treatments. I have become very frustrated with the constant answers of "I dont think I can help you" or "Its all in your mind". It is not like the doctors dont know what RSD is but they just cant grasp the concept of it and how to treat it without causing more damage.

After 50 different nerve blocks, a round of manatol treatments, and trying several medications, nothings has really worked.

Aways glad to be back in a chatroom and hopefully I can pass along some of my knowledge and experience to others.

Hi Ashfreeze, What did the orthotist do that was wrong that messed you up? I wear orthotics too

[ali12]

Originally Posted by AshFreeze

I remember when I was your age and just starting to understand this condition. Doctors had few answers for me and spend many years with no help. I also take vitamin C. Have you heard of Buffered Vitamin C powder?
Thanks for the offer, I think with all of us RSD putting our heads together we can all help understand this condition.

I'm so sorry to hear that you too have had RSD from such a young age also ! I understand what you are saying about it being hard trying to understand what RSD is - when I was first diagnosed, I didn't have a clue and was so scared and in pretty bad denial. I still don't understand RSD fully now and don't think I ever will but I can understand it a bit better than I used to be able to. It's so frustrating being so young having this disease as I have lost most of my friends and can't go to a proper, mainstream school - i'm sure you understand also unfortunately!!

I have never heard of Buffered Vitamin C powder. I will have to look into that - thanks! At the moment, I am just taking vitamin C capsules.

Take care of yourself and if you need anything, i'm here for you!

[Mslday]

Originally Posted by AshFreeze

I have begun giving up on conventional medicine for RSD support and now looking more towards more natural and homeopathic treatments. I have become very frustrated with the constant answers of "I dont think I can help you" or "Its all in your mind". It is not like the doctors dont know what RSD is but they just cant grasp the concept of it and how to treat it without causing more damage.

After 50 different nerve blocks, a round of manatol treatments, and trying several medications, nothings has really worked.

Dear Ashfreeze,

Welcome to the forum, I'm sorry to hear you have had so many failed treatments, it is very frustrating. What is a manotol treatment?

I too am very interested in a holistic approach to managing my rsd and am currently researching many options, some of which I have started and am having some success with. What area of Western Canada are you located in? I'm in the Vancouver area.


MsL