SandyRI: thank you for the support, i know i shouldnt say never, and i still have hope, just when im depressed, I feel like this is my life forever, which I hope it isnt... im fighting like hell to get rid of this disorder...im in physical therapy, and even when it hurts so bad im about to bawl, i still go through the pain, because im not letting this thing take me down completely, without a fight anyways! about the ketamine infusions, while i was at Mayo clinic in Rochester, they gave me a Ketamine cream..everyone around kansas city didnt know much about the stuff, so im assuming there is no doctors around here that do the infusions...i will look into this, because ive read alot of posts about that, Thanks!

Read everything you can - this board is an awesome resource, check out all the old posts. You can use the search tool in the upper right hand corner. Also go to the RSDSA.org website. Check out facebook, too. There are some good groups, like Ketamine Klub (started by a fellow Rhode Islander!!).

Just because no one has heard of the ketamine doesn't mean you may not find it where you live or in a nearby city. There are a lot of treatments that your docs may not be up to snuff about, because there aren't too many of us, and so they may not have a whole lot of experience treating RSD. Most of us have had to become our own best advocates. And more and more docs are starting to offer ketamine. So don't hesitate to ask about it.

Desensitizing your hand and arm may give you some of your life back. The RSDSA webiste has a physical therapy section with really good articles on the topic.

I'm really sorry for what you are going through. If it makes you feel any better, the first year that you become sick with RSD is usually the worst.

Sandy

Amy I can relate to fearing to do a treatment cause of fear of getting worse. I feel the same since it has happened. I guess for myself I just try to get as much information as I can about the procedure,sometimes get another opinion,and weigh the pros and cons. I am back in a really bad spot and I know I need to try something again and I am looking into ketamine. Many major hospitals like when I was at Cleveland Clinic or like you said at Mayo don't do ketamine infusions so they don't discuss it much. That is what I have found. Many hospitals or specific doctors have what I call their "thing" a and they feel a specific treatment is what is good for rsd. They look less at the individual and more at it just being rsd. I think that is wrong because though we all share the common rsd horrid pain we all respond different to treatment. Anyhow if you want an email buddy I am here. Hang in there and hold to hope

daniella, i completely get what your talking about with the doctors' "thing". everyone i have went to thinks they know exactly what i should do, and how it should be affecting me, and if it doesnt work they think im wrong, or im not telling the truth...id type more,but i am hurting worse than i ever have, and in places i never have before, so im typing with one hand, and about to go lay down and wait for my dr's nurse to call me back to see what i need to do

Amy20

I see you live in Kansas. I live in the greater K.C. area. If you need help finding a good Dr. that will treat your pain without judgement because of your young age I may be able to help you. There is a support group in Overland Park if you want to join one Just Google crps/rsd in Kansas and you will fine their web link.

Good Luck

Hurting

hurting: what dr do you go to? im close to that area, so knowing another opinion for a good dr would be great!

Hi Amyb20,
My heart goes out to you and especially to the young people here. I have had full body rsd (Fibro, blah, blah, blah) for over 6 years now. I am 48 but physically feel like a 95 year old lady and mentally most of the time feel like I am about 20 years old haha. You are only as young as you feel so the saying goes so you need to forget for the time being about the physical parts that hurt now and concentrate on the inner you. Pull your strength from inside the strong you. I know it is upsetting esp cause you are so young. It is a huge blessing that you have a supportive husband, family, and friends. I have none of that (most people just deny my pain) but I pray alot and laugh at least once per day out loud (and more if I can). You now (for the time being) have a new normal to adjust too. Spend more time with your husband just doing quiet things like a walk in the park, watching a river or stream, etc. Try to do things now that you can do and concentrate on that. You will also grieve your old life as if someone died. You just have to go through it. I cried the first year or so every day and then I figured God has me here for a reason and if I can help one person out then I am doing a good job. This is the best place for advice and support that I have found. Vent to us...we are here for you.

About the having a child part. Don't give up that part of your life yet. I had five miscarriages (and started looking into adoption) because I was told I would never be able to have any children...I had my miracle and he is now 22 years old. So, I think of what I was told about not being able to have children and he is here and then I think about doctors, etc. saying there is no cure, etc. and I think only God knows what is in store for us so let Him handle it.

It sounds like you have a very loving and sweet husband so enjoy him and help each other through this bump in the road of life. Take things one day at a time and try not to plan to much in the future.

When things get bad for me I put myself in time out...I go in my bedroom and cry for about 1/2 - 1 hour and get it out of me and then I get back up and keep moving. There is nothing wrong with getting the negative emotion out. It makes me feel better.

I have done just about all the treatments for rsd in the past six years and found you never can give up hope (even when it is real bad) and just have to keep plugging away until you find what works for you. Remember to keep saying positive things out loud and thinking positive things too. It will help you to deal with life a bit easier and it is good for you. Well, hope my two cents has helped you out. Hang in there and we are all here for you any time.
Take care,
kathy d

Thank you Kathy for the kind words and advice. I am so thankful for my life, if I don't understand why this is happening to me, there must be a reason, I believe He will keep me safe and not give me too much for me to handle...but yes , it is hard and I do think negative sometimes, but I try my hardest not to.