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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 08-07-2006, 09:26 AM   #1
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lisa17 HB User
Question can you ever live PAIN FREE with RSD

HI EVERYONE
I'M NEW TO THE BOARD, AND HAVE HAD SOME HELPFUL RESPONSES, BUT I FEEL I NEED TO CHANGE MEDS, TO SEE IF I COULD BE MORE PAIN FREE, I GO TO A PAIN MANAGEMENT DR. IN 2 WEEKS FOR A EVALUATION. I DON'T THINK THE MEDS THAT I HAVE BEEN ON FOR 4 MONTHS ARE DOING AS GOOD AS THEY USE TO, OR MAYBE I'M GETTING WORSE. I THOUGHT ABOUT ASKING IF HE COULD CHANGE MY MEDS. I'M ON LYRICA AND LORACET, I WOULD LIKE TO SEE IF CHANGING MY MEDS WOULD RELEIVE MORE OF THE PAIN, BUT I'M AFRAID OF WITHDRAWALS, GOING OFF OPIATES CAN BE A PROBLEM FOR SOME PEOPLE OR DOES OTHER MEDS TAKE CARE OF THAT?

 
Old 08-07-2006, 02:17 PM   #2
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MindyM HB User
Re: can you ever live PAIN FREE with RSD

Hi Lisa!
I'm new here too, but this is one subject I'm all too familiar with. I have had RSD for 5 years. I've been on Hydrocodone for most of that time. I have been afraid to ask my doctor to change mine for the exact same reason. I don't want him to start thinking that I'm a drug-seeker and take what little relief I have away from me. It's such a miserable game we have to play with all of this, isn't it? Anyway, you should definately be comfortable enough to ask your PM to change it. You will need to up it and change it from time to time. I actually learned here taht tolerance to meds does happen and you should have them switch 'em up sometimes.
Hope you get some relief at your next appointment. Don't let them scare ya. They don't know half as much about RSD as you do!
Take care and good luck!!
Mindy

 
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Old 08-07-2006, 04:22 PM   #3
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lisa17 HB User
Re: can you ever live PAIN FREE with RSD

HI MINDY SORRY TO HEAR THAT YOU'VE HAD RSD FOR 5 YEARS, HOW DO YOU DEAL WITH EVERYDAY LIFE.....?

 
Old 08-08-2006, 05:37 AM   #4
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MindyM HB User
Re: can you ever live PAIN FREE with RSD

Hi Lisa,
Just read your reply...Well, living through it is a different experience every day. Sometimes when i try to post a message, I just don't even know where to start. I work full time. I have 2 kids at home and two step-kids on the weekends. My life is non-stop activity. And I have RSD. Lisa, it's getting harder and harder every day. I used to take meds to cover up the symptoms so that nobody else had to look at my misery. I can't hide it anymore. I come to work some days and can't wear shoes because my legs and feet are so swollen. I hobble around like I'm 90. It's awful. I try to sit at my desk as much as possible. (which makes me hurt even more) What I've learned is, don't bother trying to explain yourself to people too much. It's just frustrating for you and boring for them. I have one really good friend at work that I confide in. She knows I'm dying inside and deteriorating outside. My husband is a chiropractor. He does as much for me as he can. It's really hard for him to watch me suffer with something that he can't help. My kids don't understand why some nights I can't cook. I used to cook no matter how I felt, but I can't fake it anymore. I guess, in answer to your question, I get through every day with the one true friend I have at work and the love and support from my husband. I love to sit outside on my really bad days and watch the birds drink from our little waterfall in our yard. I lay in the sun to bake the pain out. (unfortunately it gives me ulcerated sores....) Life is what it is. Opportunity. I want to get as much out of it as I can. I have some really bad days where I'm not sure why I try to be so strong, but just looking at my family makes me get up each morning, take my meds and face the day.
Thanks so much for writing. Sometimes this board is all I have to get me through the day without tears!
Take care of yourself! I'll look forward to reading about you in the future!
Mindy

 
Old 08-08-2006, 06:25 PM   #5
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lisa17 HB User
Re: can you ever live PAIN FREE with RSD

HI MINDY, THANKS FOR YOUR SUPPORT, IT'S BEEN ONE OF THOSE DAY'S, I'M SURE YOU'VE HAD MANY......HAT'S OFF TO YOU FOR WORKING, MY CHILDREN ARE GROWN NOW(THANK GOD), IT WAS DIFFICULT ENOUGH RAISING THEM CAN'T IMAGINE HAVING TO DO IT NOW WITH RSD. I HAVN'T WORKED SINCE I FELL IN DECEMBER WHEN I BROKE MY ANKLE AND HAD SURGEORY, THAT'S WHEN I CONTRACTED RSD (SO THEY TELL ME). I'VE WORKED FOR 20 YRS, I GOT DIVORCED 5 YEARS AGO, SO I HAVE NO OTHER INCOME, I APPLIED FOR SSD, BUT I'M WAITING TO FIND OUT IF I GET APPROVED, IN THE MEAN TIME, I WORRY ABOUT LOSING MY HOME, CAR, WHERE MY NEXT MEAL IN GOING TO COME FROM, I HAVE ABSOLUTLY NO INCOME, HOW I WISH I HAD MY HEALTH BACK............I GET SO DEPRESSED, AS IF THE PAIN ISN'T ENOUGH!!!!!!!!!!! NOT ABLE TO WORK, IT GETS TO YOU EVERY DAY, WOULD YOU OR ANY ONE THAT MAY READ THIS POST KNOW OF A SUPPORT GROUP FOR THE DETROIT METRO AREA?

THANKS
LISA

 
Old 08-09-2006, 05:09 AM   #6
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DiamondLil HB User
Re: can you ever live PAIN FREE with RSD

Hello Lisa: Does Washington have an assistance program for people who are struggling financially? You may be eligible for food stamps, help with utilities, property tax relief, insurance for your children and prescription coverage. Try looking in your phone book for government agencies that are here to help people like you. Good luck to you regarding SSD. Regards, Lil

 
Old 08-09-2006, 08:22 PM   #7
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lisa17 HB User
Re: can you ever live PAIN FREE with RSD

THANKS LIL, I'M TRYING TO GET HELP......THANKS FOR YOUR RESPONSE

LISA

 
Old 08-09-2006, 09:51 PM   #8
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Skooze HB User
Re: can you ever live PAIN FREE with RSD

Hi Lisa

I guess the answer to your question about living pain free with RSD is no. There is no magic pill. It's just the way you look at life and come to acceptance that gets you through it. I've had RSD for 6 years plus, am a single mom, and have 2 girls 14 and 19 now. But the key is to accept that you can't do what you no longer could and FOCUS on what you WANT to do that you CAN do. It's really hard at first being cut off from the world and wondering where you next meal is coming from or how the bills are going to being paid. Social Security kicks in verrryy slowwwlllyy, but when it does, it will seem like XMAS! I think the government does this for a reason to see if you are really disabled or not. Normal people whould give up and wash dishes or whatever in order to eat. But to the government either you are disabled or you ar not. It's that cut and dried. It's really hard when you first get RSD and you feel like you want to crawl into a corner and die. I couldn't find a support group where I lived, so I started my own and met some really neat people, who are still my friends. We held the meetings at the youth center which was closed during school hours, but perfect for us. 11 am is a good time to start. Some peopld can';t move befor then, especially if they can't sleep well.

But do some research at the library or pull out the yellow pages and let your fingers do the walking. I always explained to people that RSD is like MS, except involves the nerves instead of the muscles, and people understand quite easily then, and they can help point you in the right direction. There is help out there, and you are not alone. . .you always have us. Good Luck Aloha Skooze

 
Old 08-10-2006, 05:15 PM   #9
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lisa17 HB User
Re: can you ever live PAIN FREE with RSD

HI SKOOZE THANKS FOR YOUR ENCOURGAMENT, YOU ARE SO RIGHT, ABOUT S.S.D. SOMETIMES I JUST WANT TO GIVE INTO THIS DISEASE, BUT I KEEPING THINKING, ONLY THE STRONG SURVIVE!!!!!!!!!! (AS LONG AS I CAN REMEMBER)LOL. I HAVEN'T COME ACROSS 1 PERSON, OUT THERE IN THIS HUGE WORLD OF OURS, THAT HAVE EVEN HEARD OF RSD. I'M SO GLAD, MY PT TOLD ME ABOUT THIS WEBSITE. IT'S GREAT TO KNOW THAT I HAVE MET SOME PEOPLE WITH THE SAME THING THAT I HAVE, AND KNOW WHAT I'M GOING THROUGH. THANKS AGAIN

LISA

Last edited by moderator2; 08-10-2006 at 07:17 PM. Reason: Please do not post websites except as described in the posting rules section titled "How to share information".

 
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