Hello, my name is Eleanor and I am 44 years old. On August 5th, 2007 it will be 4 years that I have had RSD.
I use to work as a chiropractic asst. and loved my job. I enjoyed working with people and helping them feel better. January of 2006 I lost my job due to my disability. I have four children. Their names are Rudy 28, Monique 26, Alyssa 14 and Alexandra 13 and my husband Jaime. I also have four grandchildren that belong to my daughter Monique and Nathan her husband,their names are Joseph 8 ,Nathan 6, Ariana 5 and Natalie the baby of the bunch who is 3. I use to love to shop and walk and go places and have fun. I nolonger am able to do any of it do to this pain that is hell. I am always at home I can not drive or walk,or do too much of anything. I have a wonderful family that is very understanding and keep me going. I want to tell you about my youngest daughter Alex, she is an angel she is my right arm or my left hip. She does everything for me. she makes me happy when I am sad, she rubs my back, neck, and FEET, she makes my worse day better, and my better day happy. On a scale from 1-10 my good days are 9, my bad days are a 20+ I take strong medication every day. I wish to GOD I was normal again!
Hi , my name is Dee and im interested in rsd to help my sister-in-law that is going through this pain everyday of her life,hopely there is some relief for her in the future … also i am going to join other communitys on different disorders due to other issues in my own family…
I am a single parent of a teenager. I was diagnosed with RSD in 1999. It has had me up and down ever since. From 99-05 I was in a wheelchair. I managed to get out of it but the doctors told me not to think my struggle is over. That I may one day be back in that chair. So for now I just want to be able to live life to its fullest before I end back up in the wheelchair.
I am hoping to be able to get to know others who have the struggle as I do.
Another thing I would like to see is hear more about what procedures are out there that I haven’t tried yet. Sometimes when I talk to doctors I feel as if I know more than they do.
Thank you and have a great day!!
My name is Audrey. I have had RSD for 6 years, it in all four extremities now. My life is not my own anymore, it belongs mostly to a chronic endless burning painful monter. I want the world and at least more of it to believe me. Why is social security so judgmental and disbelieving. Why is a judgme more qualified to tell me and my specialist that I should be able to work. I was a registered nurse for many years before RSD, and believe me, if I could still take care of others I would. I can not even take complete care of myself now. I have lost my identity, my spirit, my confidence in myself and top all this off, I am suppossed to have the strength to fight for my legal rights too. I believe in taking care of as many folks as we can as a government of American people, but to aleniate those of us with RSD because we have no visible broken bones does not mean our symptoms are not real. I am so disappointed with our system, my tears are not just for myself but for my fellow RSD sufferers whom I know share my feelings. May God bless us and carry us through each day.
My name is Cooley @ I am interested in this condition because I have RSD. I need to learn as much as possible because I am living a nightmare, not just from the pain but also mentally as well.
I am interested because I may have RSD. I just want to know how other people who have this, deal with every day tasks, and just living. I want to connect with people who have RSD to learn more about it, and just how they deal with it.
I’M A DISABLED MOTHER OF ONE SON I’M A SURVIVER OF RSDS FOR ALMOST 9YR.'S AND LET’S GE REAL FOR ONE MINUTE,IF THEY CARED THEN, THERE WOULDN’T BE THIS MANY WEB-SITE’S NOW WOULDTHEE
Six months ago I got a torn rotarty cuff in my left shoulder. This progressed to RSD. I was in shock when the doctor said my “dead arm” and fainting from pain was not due to the roto cuff but RSD. So far, a nerve block injection has not worked. I think I could manage if it was just pain, but coupled with the swelling, burning throbbing and numbness at any given time is almost to much to bare. Pain meds. only take the edge off until it wares off.
I'm interested in RSD because I've live with it for over twenty years now, it has taken my job where it started and I find that even now after many Doctors no one not even my family understand what I face each night and day. I'm a very private person and I don't openly share my pain with others. After many attempts on my life I need to fine some one to talk to.Hi, my name is Wendy. And the reason I’m here is because my husband might be suffering from this. The reason I say might is because, finally, after many doctor’s, one said he thinks this may be it. My husband goes for a bone scan this week. I just wanna know if panic attacks and getting dizzy, sick to your stomach comes with all of this. I’m scared, and so is he.
Hi my names Frank, I’m told I have R.S.D. I’m worried about the future, and not sure what to do, or what’s going on.
25 year old nurse just diagnosed with RSD after sustaining a fall at work 9 months ago.
During our 28th family reunion this weekend, I witnessed (for the first time) one of my nephew having what I believed to be a seizure. During this “episode” his mom and wife explained that his doctors believe he is suffering from RSD. Watching him experience what seem to be excuriating pain, ripped through my very soul and my tears have been almost nonstop, ever since.
I’ve much to learn about this devastating, life altering disease and pray you extend me an invitation to join your group. I’ve put a call into Jon’s wife and mother, advising them of this site. It is my hope to pass on enough information, from this forum, that they’ll realize there are others out there that share their stories, thereby possibly offering up different therapuetic methods/medications not yet tried by Jon.
Sincerely,
Renee
P.S. Not sure if Jon and Charlotte are set up to chat online via instant messager. Is this a forum or a chat room? Both?
HI I HAVE RSD IN LEFT LEG AN FOOT FOR 2YEARS .I WOULD
LIKE TO TALK WITH OTHERS ABOUT LIVING WITH RSD AN
TREATMENTS THEY HAVE TRYED
Hello,My name is cora i have had RSDs for about 4 years ,in left hand have tryed everything ,and i mean every thing .after all the Pill’s Doc,i still have it ,i like to read all the stuff and try and see if any of it compares to what i feel,I live in Michigan and have only heard of a few people that have it .I can move my hand now ,but the Burning and pain is always their,I thank god everyday that it hasn’t got any worse,i have seen pic and feel for some of the people that had hands removed because of it. thank You Cora
My RSD raised it’s roaring head after surgery on my right knee in May 2007. I thought that I was having some kind of strange message from my body that the doctor went crazy cutting on the joint to remove the bone spurs and arthritis. I literally felt like, and still do at times, that someone is shoving a clever or axe through my knee joint but the joint won’t give into the pressure of the weapon. Of course, there is nothing in my knee that I can just simply pull out and throw away.
I have been on medications to calm some of the pain. It has only decreased it to an eight with Lyrica, Effexor, Avinza, and Mobic. Along with those, I have had three sympathetic nerve blocks that have done nothing to give me relief. I have had trial SCS (spinal cord stimulator) that made my pain worse. My new pain specialist is going to attempt a different type of SCS that can actually be adjusted by him to direct the pulse of the stimulation to different areas of the spine by one lead. I am hoping that it is enough of an answer that I can finish getting my degree.
I pray for each and everyone on this site to have days where they can laugh to make your days brighter. If you can’t find a reason to laugh, go and sit your car at a school playground and watch the children. They are natural comedians. If that doesn’t work, try going somewhere that you can watch prairie dogs, or something similar, because they love to entertain.
God bless each and everyone, every day,
Lori
Hello my name is Faith I now have had RSD for little over 10 yrs now, the pain & the burning is enough to make one go crazy!
I trust we can get to know each other
Peace, faith
-------------- Original message --------------
From: LRenfroe rsds-cpt2325@lists.careplace.com
Hi - I really empathize with your pain. RSD came to me as a result of hand surgery in 1996 - work comp case - a real nightmare! I have had ups & downs. I was really depressed the first few years until my family dr. got me on anti-depressants - work comp would not pay for them. They help with the pain too!! I took only vitamins up to that point - now my misunderstanding critical mother calls me a drug addict. I’m 66, 10 grandchildren, one great-grand-daughter that make my life so full & happy. I have become a Bible-believing Christian & have found many promises that really have helped me!! Since getting RSD I have lost my husband to cancer & had to go bankrupt, had breast cancer myself (recovered so far!), had throat surgery & 2 strokes. So, let me tell you, there are lots of things I could cry about but I am only thankful - so thankful for each day that I wake up ALIVE!! I am choosing to be happy & contented today!!
Tell me about your situation. I’m a good listener (reader’s ears in this case) so keep in touch if you want.
----- Original Message ----
From: faithly rsds-cpt2325@lists.careplace.com
To: yvette@aceitcomputing.com
Sent: Wednesday, January 9, 2008 9:26:08 AM
Subject: Re: [rsds] Reflex Sympathetic Dystrophy Syndrome Member Introductions
Hi Yvette, What a wonderful wonderful inspirational individual you are a true blessing. You have been through so much and your faith and attitude shine through like a light from God. I feel guilty even talking about my problems after every thing you have been through and losing your husband, I am so sorry. Thank God you are so blessed to have the rest of the family around you… My RSD is kinda up and down, what I mean by that is" some days are better than others". I have already been told don’t ever expect to work again! Especially being an R.N. so I applied for disability through an attorney and he said I have a 90-95% chance of getting disability. My RSD is in all 4 limbs, rls,gasteroperesis,Achalasia, had a total hysteretomy due to cervical cancer. Overall I have had 15 major sx, I keep telling them they need to take out my appendix because if it’s going to get hot and need sx it will happen to me(LOL)… I guess after I had my pain pump put in I thought I would be alot farther along than I am. I did’nt thnk I would be this nausea’s all the time even thou I had nausea problems all the time but, not this severe. I am still having flare up’s in my right leg but, the worst is under my arms I can’t even let them touch anything. The meds that they have me on for the RSD is Dilaudid that is in the pain pump; I could’nt tolerate the morphine they said I was allergic to it. which I don’t understand I have been taking orally for along time. However, I do believe the hardest part is going through my lumbar and thoracic sympathectomies and having them work and leading a pretty much to normal life 5 years after the first one and 4 years following the last one. Then I had to go and re-hurt myself and since 2000 it’s been one thing after another. One of the strongest worries is my daughter she’s 12 and I think she kinda resents the fact that I can’t everything all of her friends Mom’s do with their daughter’s. However, it dosent matter how bad I feel or how much pain I am in I struggle through it. This past summer we went to Ohio to visit my husbands parents and I allowed my daughter to bring a friend; Even thou I was hurting really bad we went to the Cinnicinati Zoo, Kings Island, The living marine musem. The Year before we went to Orlando Epcot,Universal,BushGardens and Sea World…plus we go to the mall, movies, and do whatever I can!!! Trust me when I say this I pay for day’s and weeks depending on what i have done. But, she’s right my husband or my best friend will drive us to the mall and were there abour 3 or so hours and the next 2-3 days I am spent for about 3-4 days. So all I can is pray that the Lord…Thanks for listening and have a blessed day. Thanks for being a friend.
Hi I’m Britt. Ive had RSDS for over 5 yrs. I just joined this place. I hope to find people who are looking for new ways to treat this disease in a holistic manner- or with the least amount of Chemicals as possible.
At the momment, I am in the acute stage but progressing rapidly into the dystrophic stage. I have a wonderful treatment team- however they are located over 5 hrs. away from my current residence. I am trying to find doctors in the Santa Barbara, CA.
I also have many other factors, which are all described in my “story” on my page, that are adding to the rapid progression of the RSDS this time around.
I am a very open, understanding, accepting, and educated person. I hope to hear from many and ehlp whomever I can.
"Live today to further improve your future- do not live each day trying to patch up the past. "
“If your focus is glued to your rear view mirror, the smallest bump in the road can make you crash”
Britt
RSDcowgirl