Thank you janine.  I have noticed a fast and steady decline in my ability to type and even use the mouse.  Your  post brought tears to my eyes.  I've been tryioong to be so strong for the kids and my hubby. ( pretending it's not as bad as it is ) Thank you for letting me knowI'm not crazy and not alone.

 

Lisa

Hi, I'm new here, my name's Dawn. I got th RSD dx about 2 months ago and am trying to figure out how 2 cope. I'm glad to see this post & response, as it's exactly what I needed. The pain is one thing in itself, but having noone believe that theres something wrong with you is another. I have rsd in my shoulder, and some days im ok, and some days im not. I sometimes think that I should pretend it hurts all the time so people believeme (not including my spouse and kids) .... but with them, im pretending im ok, so they dont worry, i dont want to bring them down when im not feeling well. I also worry that my husband might just get sick of it all. (we're newlyweds and pretty happy, so its probably a baseless fear. hes actually been pretty great about all this. thank god I go back and forth between being determined to fight this, and being depressed. I've been in PT for about a year now and i just seem to stay the same. I dont know if im going to make it better or to keep it from getting worse. my pain is actually a lot better than it was before (which of course is still a lot now), but now i keep getting these episodes where my hand just goes limp and im doing more and more with the other arm and less with this one. im so thankful that it isnt as bad as some of you guys unfortunately have it, but i think even though the pain is less tahn it was, its getting worse. it feels like its spreading too. sorry this is so long, theres just noone to talk to about this. does anyone know if there are local support meetings to go to ? or where to find this info? may God bless us all with strength to deal with this .....

Dawn

Hi Dawn,

 Welcome to our group, I just wanted to drop you a short message. You say you have only had RSD for about 2 months...you are still with in the time frame where it could "possibly" shut off with blocks and other comon methods. I hope you have a good Dr that knows about RSD and is treating you very aggressivly in an attempt to shut it off...its not a sure thing but quick and aggressive treatment can turn things around for some people.

 Anyway, I am glad you found our group as there are a lot of great people here who have a wealth of information and support...or just someone who understand exactly what you are going thru....again, welcome and dont be afraid to express your feelings freely to the group.

Franknberrie

Hi Doobiedoright,

 I remember telling my comp Dr about 2 or 3 weeks after a carpal tunnel surgery that I woke up and my hand had started burning like nothing I had ever felt before....his reply was stern and harsh, he said to me"dont even try that crap with me, I am not going to start you on any pain killers he said and added "how stupid do you think I am?"  Well I thought he was a stupid work comp whore! and when another Dr finally diagnosed me 2 1/2 years later after it had taken over my entire upper body....I called the stupid comp Dr and give him a piece of my mind and told him he was going to need a very good lawyer...lol   I have had RSD in both arms,shoulders and mid back for 8 years....I deal with it like you do!

Franknberrie

wow, it sounds like you have had RSD longer than anyone else here. I think I read in another one of your posts that you got rid of the meds and docs, is that right?

You are so right. I know that as much as I don't like to admit it, I am in alot of pain...mentally as well as physically. I'm angry at the world for letting me be this way. I'm mad because this disease robbed me of my childhood, it forced me to have to grow up too fast, to accept that life wasn't fair when I was only nine. It took away friends who just couldn't understand what was happening to me. It made me give up skating. It's made me have to pretend I'm stronger than I am because I'm afraid to show people how I really feel. It's put stress on my family, possibly the reason for my dads abusive behavior. It's stopped me from being a normal teenager. I can't go to parties, when my friends rough house and act crazy I have to just watch from a distance, when the all squish together on the couch and I have to sit there and worry about getting bumped, when at the end of prom I couldn't even walk, it just makes me grieve because it just seems so unfair. Sometimes I think I need something to help me walk, because I feel like my legs can give out on me at any moment, my endurance seems to be running out, but I'm afraid to go to school with a cane. Those times I had to use a wheelchair at school were so humiliating for me. The times my friends had to let me lean on them because I was in so much pain...the weird looks, people telling me to go home or see a doctor when I knew that this is just how my life is. And now I'm grieving something else, as I have gastroparesis. I'm grieving my ability to eat whatever I want, to feel hungry, to not feel sick to my stomach. If you dwell on it though, your life will be miserable...even more so. I don't care as much anymore. I started wearing my braces when I needed them, and even my tens unit to school. Sure people asked questions or gave odd looks, but who cares. I use it as a chance to make one less person in this world ignorant to our sufferings. I like taking long baths when I can tolerate them, reading in the bath tub...such a heavenly thing. I like getting gentle hugs from my friends, I like feeling close to people. Some people get so scared they'll hurt me that they just stay away from me completely, but I still desire hugs, cuddles, those comforting gestures. My friends are getting better. They are starting to give me gentle hugs, and sometimes my friend will just real lightly give me tickles...well I don't know what you call it but it just helps me to feel more normal. I'm not half as bad as some people, but I am in pain. I just am soo dang stubborn it gets on everyone's nerves because I wont admit when I need help, I wont let people see my pain. I'll walk a mile if that's what it takes to seem the same as everyone else. So sometimes people assume I'm fine, but they can't feel the searing pain I'm fighting with each step, and they don't hear my cries when I'm alone in my room at night. I'm getting better at letting people help though, and accepting this life.

Hi Doobie!

Thanks for giving me your back story. I only put up with the meds for a few months and said screw you to the doc. I hate meds. I don't do well with meds to begin with and that was all they kept giving me. it went like this... ok, that one didnt work here TRY this one. When I said I could not sleep it was here try this one. TRY? what the hell? I am also a nurse, and I know what these meds can do over the long term and the addictive qualities they have. But, they don't mention that. So I told the doc screw you. and I started accupuncture. It was going really well until I got pregnant (many say thats how I got pregnant, I was feeling better). So my pregnancy made my symptoms worse. So all I could do was accupuncture and I liked it! But, now I had the baby and would like to continue accupuncture but my work comp people think it is not working cause I have to keep going. ( uh, hello it is helping my pain not fixing the problem...if they knew of a way to fix it dont they think I would do that, stupid!) So, now they are going to try biofeedback. Have you had any experience with it? I am trying to forego the meds totally but some days are harder than others. I haven't taken anything since I found out I was pregnant. The doc keeps trying to press the meds but I am pretty firm telling him no! It helps that I am breastfeeding cause then that is my reason. If you have any other suggestions for me that are of the "holistic" path I would love to hear it. Thanks again. -Jama