hello, my name is Amy. I am 21 years old, almost 22. I live in Kansas. I was diagnosed with RSD after have a steriod injection in September 2010 for tendinitis, in the wrong place, which set off all my symptoms of RSD. It wasnt until countless doctors and weeks/months later, they decided I had RSD. I dont really have the physical symptoms, not yet anyways. My arm and hand ache / burn / and also have shooting pains every single day. I also get swelling in my hand when I try to use it too much. My hand is throbbing as I write this, and its hard to do, but I suck it up and go through the pain.
I have had 3 ganglion nerve blocks. the first helped for 7 hours. the second works for 5 days. the third didnt help at all, and now im feeling pains where i hadnt felt before. I hope it hasnt spread, but im not sure if that can happen from the nerve blocks. Anways I am going in the morning to get a 4th one since the third didnt work.
I take Neurotripyline, Neurotin, and have a Ketamine cream that I got from traveling all the way to Mayo this March. This all helps me, but not completely. I still have the pain, just not as bad. I have a husband, who I have been with for 8 years, which this pain seems to have brought us closer together, and family and friends that support and pray for me, but i still feel alone at times, like no one around me REALLY understands . I hate feeling like my life is gone at 21 years old. I can never go ice skating with my husband, like we did when he proposed to me.. i cant go to amusement parks with my friends and ride on the rides, because if its not bumpy, the breeze with kill my arm instead. I cant go to concerts because its too crowded. I would barely go outside my house this winter, except to appointments because the cold killed me. I cant do anything that a 21 year old does. I cant even have kids, because I found out I have a pituitary tumor, which causes you to have crazy horomones that act like your pregnant, even though your not, plus all the medicines I take, even if i didnt have the tumor, i wouldnt want to get pregnant with all these drugs in my body. sorry im rambling on, i just found this forum and thought it was great i could type my thoughts, and read others as well.

Welcome to NeuroTalk, amy! Sorry for the health issues that brought you here, tho.

I'm sorry you have so much pain -- hope the next shot does the trick for you.

I don't have the same physical problems that you describe, but you're right: no one understands what you're going thru. They look at a young person like yourself and expect that your health should be 100%.

How wonderful that you have a supportive husband. Best wishes to you for improved health.

Amy, I am 21 too... and I have had RSd for over 3 years.... I feel your pain... I cant write much right now because my RSD is hurting so bad I am chicken pecking this with my other arm... It is a HUGE change... i went through anger, i still have it, sadness, happiness.... learned lessons... so many things... hang in there.. know I am in the same shoes. I have an eye disease and have had and still am having horrible hormone problems since i have been 14... I will write later hopefully it allows me to...

hannah

Hi welcome to the boards though I am sorry for your pain. I can relate to a lot of what you are feeling. I think for me and this is easier said then done but I try to stay in the day. The worry of the future is just too much. I am going through a very bad time right now pain wise and mentally it really has hit hard as well. I try to remind myself of the people I have met who after years of being in a bad place with the rsd got to a better place and have a full life. I think it is just about finding the right treatment for pain relief which is different for everyone.
It is so great you have family and friend support. Trust me though I understand how you feel about them not understanding. I think that is why this forum is such great support.
Hang in there

Welcome to the forum Amy....

This is a good place for support, information, and sometimes to just "vent".

When you're bored, search back a bit and you'll undoubtedly find some threads that may apply to your situation.

It's not all doom and gloom though. I have found that it took way longer than I expected to develop a "management" regimen that yielded the best results.

Good luck and don't be afraid to get more opinions as CRPS is widely misunderstood, even by professionals.

Don't ever say "NEVER"...and don't ever give up!!

Try to get to the very best docs you can. Browse the ketamine doc list, are there any near you? Many of us have found that ketamine infusions are the best treatment for RSD.

So sorry that you are going through this. Please take care and keep in touch, we all care. XOXOX Sandy

twinkletoes : thank you, yes everyone that doesnt know me, thinks i am healthy..when people try to shake my hand, i always have to stear them to my other one (my right hand is affected, and im right-handed) .. whenever there is older people that are needing help carrying something, or look like they are having a hard time, i just have to walk by, because i know i cant, and i just look like a mean person, but i feel really bad inside that i cant help..its hard!

hannah: its good to know someone out there my age understands, even though im sorry your going through this like me...I was very upset last night writing that, and my husband looked at me and told me he wished he could take my pain and have it himself so i wouldnt have to go through it, and all i could say was I wouldnt wish this on anyone.. I have the same feelings as you..I can go days being in a happy mood, even with the pain, and then if im alone for a while, ill start thinking of all the bad things, and i get super depressed...i never used to be depressed, i was a very happy person who would listen to everyone else's problems and try to make them happy...now im the one sad, and cant really get support..i mean, yes my family and friends try to make me happy, but like i said before, they really dont understand what im going through...i guess i need to just look at the positive, that they are trying to help!

daneilla: thank you, I have tried a few things for pain management, tons of different medicines, and i can honestly say, what I am on right now makes the pain tolerable, until its about time to take another dose...I need to look at other options, but right now, i dont want to make the pain worse by trying different things, but i know i should!

birchlake: thank you for the support and the advise! i really appreciate it! I have no idea why in the past 8 months I havent looked for a support group..the only thing I was doing was looking up information about RSD...I did look for a support group on Facebook , but thats about as close as i got to looking. Im really glad I found this forum!