[livingwith]

I have full body RSD and do not know the cause. I am 35yr old married woman with 2 children and this has changed our lives. I have constant pain depression and anxiety and feel like iam all alone. I feel seperated from my family and now have marriage problems. I have so much guilt because of this and feel like the worst mother wife sister daughter and friend. I dont like to go out because of the way my skin on arms and legs look . I cant cover up my clothes hurt if I go outside the sun or if its...Read the full article

[lunessa_moon]

Hello, my name is Lunessa, I am also diagnosed with rsd. Though as of now I am only having pain to my entire right side, it seems as though it is spreading to my other half. I noticed this last Monday when my friend just lightly touched me on my left shoulder. It hurt like hell. My family, excluding my mother and brother,have told me repeatedly to move around more. Though it is extremely painful to do so I know that I must for their sake if not my own. I try my best to deal with the pain as much as possible. By the way, I'm 17 years old, so this would seem like; as my grandpa says, "a life sentence" but it is a new way of life. Life is not about how you die, but how you live your life that matters. I know that having RSD is painful, but try your hardest to spend time with your family and friends, plan things out that would cause as little pain as possible to you. If they see you are trying your hardest, I believe that your relationship will be a new one with them all. I truly hope for you to be happy, I wish that for everyone. Lets hit life's curve balls together. Cause if we are together, then we are truly never alone.


From Lunessa



P.S. BE HAPPY FOR YOUR FAMILY!!!!!!!!!!!!!!!!!!!!!!!!1

[dar in pa]

Hi,
i'm so sorry you also have RSD. It is a terrible disease both physically and mentally. I have it in my hips and both legs and feet. I, too, have pretty much cut myself off from the outside world as,I am afraid someone will bump me and I will be screaming in pain. When I feel so lousy, I don't even want to be out among people. if you don't live with this, it is very hard for people to understand. Even my own sister used to look at at me like I was crazy until she actually did some reading on it and found out how debilitating it can be.
I can no longer work and had to go on disability as there are days I can barely get out of bed. I do have good days and bad and try to get through each day as it comes; you know it is not easy.
I wish you the best. It is good to talk to each others on this forum; as we know what each other is dealing with. You are not alone.
Darlene

[lunessa_moon]

Yes, i believe that it is good to talk to people who know what you are going thru as well. I have done more research on my own disease and chose a random one to help explain to a friend what rsd is. I did not have the right words so i chose that random site, then he asks me what stage r u in and im like, there are stages? I have been dealing with this pain since the 7th grade and I was recently diagnosed with this 6 wks ago. Apparently there are 3 stages, the first 2 r temporary stages that last from 3-6 months. Well instead of me typing it all from memory ill just give you the site, lol. http://www.joeylee.com/whatisrsd.html hopefully it shows in the post. but yeah, that is the site that tells u almost everything about rsd. Though i believe you would no more about rsd than i do. and thank you for responding so quickly to my message, I have also posted a message on another site where they were talking about how rsd spreads in the patients view and the doctors keep telling us that it does not spread. Then they said my favorite quote so far.........."We know more then the dr's because we are the ones who are actually living with it. We know our bodies, we know when somthing just isn't right." http://www.healthboards.com/boards/archive/index.php/t-87795.html Whats ur family like, tell me about them, will you?

[chrisandrob4ever]

i am 34 yrs old and I was just recently diagnosed with this also. I too have closed myself off from the rest of the world. The pain is unbearable. And i feel like if I tell someone they think I am either lying or looking for attention. This site has help alot reading other stories and made me feel so not alone. But it doesn't bring back the normal things I used to do. I wish I could be of more help to you but to let you know you are not alone. My husband and kids do the best they can to help me bu tsometimes I feel as if I am a burden to them. I lost my job last week because I hadn't been there in 4 months due to bed rest. So please when I tell you that you are definatly not alone trust me. I am right there with you. And so are many others.

[lunessa_moon]

Thank you, it is good to have someone who understands. I have also and am still feeling the same way as you do sometimes. I hate being a burden to my mom and brother. We have to pay so much money for my appt.'s and now my grandpa and uncle think that we should get all these tests done to make sure it is rsd. Though i don't know how it could not be. The pain is nauseating and it makes me dizzy and tired now. My friends keep telling me i look thinner. which for me is a good thing, but i always tell them that my pain burns calories, lol. It might be that i only eat subs most of the time, i hardly eat at home. I really don't like this, being stuck here at home, I wanna work so bad! ppl keep asking me; "when are you coming back to work" "i havent seen you in awhile". But oh well, as many posts said; ppl dont understand cause they are not the ones living with it.

[cindy_middleton]

Hi
I too have RSD and have been through the same feelings as you, i almost messed up my whole family because i felt like i was only a burden to my kids and exspecialy my husband. I have been married for 24 years to the most wonderful man, i also was a provider financialy to my family and could no longer work so to me i was useless. this could not have happened at a worse time my youngest son just got excepted to the university of his dreams in their child phycology program he was on cloud nine, but his tuition would almost double and i no longer had a job, my daughter was soon going to graduate with a teaching degree and i was so happy... then all this happened i felt like the best thing that could happen was for me to die so they would get the life insurance money and they could still have a dream.I was never a commited church goer nor ever felt like i was a christian. I woke up one sunday morning and ask my husband to please go to church with me that day. The message that the preacher tought on that day was totaly for me all about how i was feeling i worthless i felt ,how i wanted to die, he spoke on all the things i was feeling, i felt like everyone knew he was talking to me all i wanted to do was get out of there. When church was over they said now everyone come back tonight I was thinking no way!!! on the way home my husband said " baby i cant wait to go back tonight" i looked at him and said "well im not going back!!" he said please just go with me. I agreed to go with him, that was the most wonderful night of my life, god told me if you give all your troubles to me i will take care of you and your family. I gave it all to god that night and he did just what he said he would do. i could not make it with out him,he has took total care of everything. I am in severe pain most all the time, i cant do much of anything but i have god and my family taking care of everything and i am the most happiest woman in the world, god said he will take care of all your problems all you have to do is ask!! he said all things happen for a reason i now know the reason for the RSD and one day god will heal me of all this pain if not on this earth when i get to heaven i will have a new body that dont hurt or look bad and i will be able to walk again and use my arm again but untill then, i will wait , and tell other people where their hope lies.

GOD BLESS YOU AND YOUR FAMILY!!!
I will keep you in my prayers
Cindy

[lunessa_moon]

Cindy, that is wonderful, that you have found a faith you can believe in. Truly wonderful, though i beleive in god, I do not go to church. the church i last went to was to clicky for me. if you no what i mean. I have nothing really new to report to anyone at the moment. Just that my body is fully rejecting the pain meds the doc has perscribed me. just taking one pill makes me shake horribly. so i have to stay off of it. its going to be really painful, but i must deal with it.

[cindy_middleton]

that is horrable i sure hope you find something you can take, the pain works on your mind so much it is almost imposable to do without it. i wish you the best dear please keep us informed of whats going on i so know how you feel.

bless you
cindy

[slverge]

i too have full body rsd. ive been this way for 5 years. it started in my left hand. now im afraid to drive. at times, i cant walk or touch, or it hurts to be touched. im always tired, hurting,depressed, i have migraines almost everyday, or one will last for days.i lose my memory alot. i forget my kids dr appointments and its on the calendar. i cant concentrate, i daydream more than ever.
i do understand what u r goin threw. i never did stay n touch with friends from school. i use to live in an apartment. i made friends with a couple of my neighbors. im afraid to go far from home. the friends i did have they worried about me most of the time. they didnt invite me to go out with them, dinner, lunch. it felt like they alienated me. they said "we didnt think u wuold be up to it. i dont have much influence to help me get through this. i do have my kids. i love them very much and all i can do is sit here and watch them grow up without me interacting with them.
my boyfriend is worried that he will hurt me if he hugs me. we dont have sex as much anymore. that's my fault, im numb, i hardly get emotional. we dont talk he stays in the bedroom watchin tv, im on the couch. i get the occasional peck on the lips.