Ok, one more time. They have added a new way to submit your story online. We are trying to get Montel to do a show on RSD. I have emailed them again and we need everyone to go to his website and submit their stories. I have let them know aboout careplace and told them there are several people here suffering with this disease/disorder. So please get everyone you know to send montel and email at his show.
Hi Crystal,
My name is Lashawn and I would be more then happy to e-mail Montel. I just wanted to get your opinion before I do. I have only been suffering from this condition for 7 months now. However, I have been in so much pain and discomfort 'til it’s almost unbearable!! I suffer from RSD in my ankles and feet. I have had several local blocks in my ankles (without any success). Because the condition started in my left ankle, it has proven to be the worst. So, I have had 4 sympathetic blocks on the left side of my back and 3 on the right side (no success)! Just today I got another shot in the left side of my back, but this was an RFTC treatment (using heat at the tip of the needle and it’s supposed to be a more permanent treatment). I have taken several pics of my feet and now legs because I have such massive swelling that I didn’t think any of the docs would believe me. I could share those with you if you want to see what I’m referring to. By the way, where do you suffer with the condition? Anyway, give me a shout back with your opinion and I will proceed from there. By the way, thanks for reaching out for more help for us.
PS.
I started out with a limp, then went to a cane, and now I have been on crutches for about 5mths now. I will soon be looking into a motorized scooter b/c I can’t take the pain even with the crutches.
Lashawn:
Hi. I just read your post to Crystal. I have had RSD for 21/2 years now. Ihave had the horrible swelling you describe. I am very thin and i always say that my legs sometimes look as if I weigh 200 lbs. I sufer from the pain as well. I have used all the devices to try to keep the pain at bay. braces, canes, wheelchairs, etc.
I hope you don’t mind my advice but I just wanted to share with you that eventually I stopped using those things and I am doing much better for it. I would use the wheelchair only when I traveled or when I was at places like the mall or such and I thought I was getting tp the point that I wanted one full time. It felt so much better to just sit in the chair when I needed to get around. I asked my doctor to order one for me. He said he would but that medicare would not approve it and I would have to pay for it myself. I am glad that was the case because I put it off and I kept walking. Today I am very thankful that I did. Even w/o using a wc full time I eventually lost all muscle tone in the worst extremity ( only skin hanging from my leg when it wasn’t swollen) and most of it in the other. One day I woke up and this scared me to death. I was deteriorating. That combined with a video I saw done by a pain expert where he explains to a child that the pain you feel in RSD is not an acute pain and that you need not be afraid but try to work through it ( she improved greatly) got me thinking. I got up and I started walking. Every day. A little at a time. I can now walk 30 minutes in the am and 30minutes at night.
I am still in pain, I still take a lot of meds, I still have swelling, I am still disabled and I am not expected to ever work again but I consider my self lucky that I still have the use of my legs. I recently just gave up ( what my pain management doc called my last crutch) my brace which was like a cast or ski boot. It feels great. It was hard to do but i did it and I know I will be better off in the long run.
I realize that not everyone will be able to do this but I just wanted to let you know my story so that you think very hard before you give up and get into that wheelchair.
Have you gone to a pain management program yet? I was very against going because I already had the top doctors that i was working with but I finally went a few months ago and they give you so many great ways to deal with the pain. I really wish I had gone sooner. They can also help adjust meds to get you more comfortable.
I wish you luck and comfort.
Gail
Hello,i have had RSDS since 1994,so that has been 13,almost 14 years now
as of January. I have had it spread to all of my extremities,trunk,and head.
It started from multiple injuries to the same place ,my left foot/ankle. I
had a very hard time admitting to the fact that something was wrong with
me,i worked at a maximum security prison,and in there,you CANNOT be a
whiner,so i told myself it was soreness from exercise,i never told anyone,
but towards the end of my tenure,before my last and final injury there,i
thought i must have cancer,or was dying ,i couldnt put it together in my
mind to make sense at all. I then slowly,and after many bad
doctors,especially from workers Comp,i found out what i had,i found out
the truth.It is imperative to keep on walking,just like one of the folks
here said. It will spread,YOU MUST DEAL WITH IT MENTALLY,and FIGHT it
physically. I think a show on Montel,would be fantastic. I had a Dr. in
Stanford, a well known Pain Management/RSDS Dr, give some numbers about
people who have this. Suicide is high,very high, for those whom have this
all over,like me,0.3% DO NOT take thier lives. DO NOT TAKE YOUR LIFE,to
anyone who sees this,and due to the numbers of people who have this,and the
fact almost no one knows about this,including family practicioners,tv
exposure would really help. This is one of the most difficult ailments a
person could have,and GOD BLESS YOU ALL,i hold onto my faith in God with
an iron fist,I go to God with everything,and He has taken care of me.
Without that faith,i would have taken my life,so i know how easy one can
slip into that thinking,that it would be ‘ok’ to do this,it’s NOT…We are
special,quite honestly. We live with something no one else but us would be
able to truly understand…and being alone,with no information, or help,is
the worst case scenerio for one of us. I am very much for your idea. I dont
know an rsd patient that would go on tv,i would talk over the phone,as i
have lost my looks as a result,but i will help in any way i can. Lv.me :^)
On 10/6/07, gaile rsds-cpt6210@lists.careplace.com wrote:
My dad is 59 year old he is in a medical book as the longest living man to survive RSD, they say most commit suicide or become addicts, he is a severe alcoholic to help with pain, he was injured in firetruck accident when he was 23 years old crawled for 1 year…we have some stories to share and tell…as well…
chelwig75 rsds-cpt6210@lists.careplace.com wrote:
I am glad that we are all talking about this. I am very hopeful that we all can get this on a show. I would love to keep conversation with you all to keep our spirits up and have people to talk to.
your sister,
chris
I was diagnosed with RSD in 99. Since then I have lost my marriage, lost friends, and lost the ability to work. How many companies want an employee that sometimes can’t get out of bed. I have used everything from a cane up to a wheel chair. On my good days I can walk but not long distances and on my bad days my daughter has to help roll me out of bed into my wheelchair. One thing is for sure, RSD is not for wimps.
Before I was diagnosed I had doctors flat out tell me the pain was all in my head, I was trying for attention, or I was mentally insane to imagine such pain. I began to feel like I was insane. Then I had a doctor who actually knew what I was talking about and explaining to him. The doctor was a big relief to me because I was ready to become a statistic because I couldn’t handle the pain any longer.
From 2000 until recently I stayed in my wheelchair all the time. My daughter is my reason to keep moving and keep walking. On the really bad days she keeps pushing me because she knows she can get me to push myself. I am one of the lucky ones who have someone to have faith in me. Those who don’t have someone like that have more depression and are more likely to become a statistic.
Keep the faith in yourself and you will get through it. When you stop believing then you will have worse problems then the pain.
chelwig75 rsds-cpt6210@lists.careplace.com wrote:
Crystel, I would love to send my short story to Montel. Im one of the lucky ones I guess. I developed RSD from knee surgery the end of October 06, and thanks to some very caring physical therapists, sought out a pain management doctor and was diagnosed with RSD in early December. Catching it early is (Im told) a good thing, I have had a couple of lumbar blocks and really need another one, but cant afford it. RSD has spread from my right foot to my right hand, and now I have the early signs of it in my left hand and left foot.
The financial burden of this disease is overwhelming, insurance companies are not very forthcoming, and the cost of physical therapy is out of my reach. We have been able to keep the pain under control pretty much with a fentany patch and percoset, but I know I am dependant on the meds, and Im not thrilled about that, and there are the occasional flare ups, that nothing will help. I have had to force myself to keep active since I cant afford the physical therapy.
I have since been diagnosed with diabetes, but that is a whole different story.
What I need from you is the address for Montels website, or where to send an email.
Hello all,
Here is the Montel address: http://www.montelshow.com/show/tell-us/submit/other/1026/
I have had CRPS/RSD since Jan 8 th 2003. It started in my left knee after a work related accident. I have been fighting with workers comp insurance since. I now have SEVERAL other conditions and syndromes because of the poor and improper treatment. I have went ahead and sent the Montel Show my story in the hopes that we can spread the word about CRPS/RSD. Lets hope this does work!! This would be a wonderful thing!
~ Lots of hugs ~
T
On 10/9/07, connie helwig chelwig75@gmail.com wrote:
Hi ALL! Crystal, i hope this talk DOES get Montel to do a show on RSD,we
are a true group of troopers,and there are so many more out there with
improper diagnosis,bad treatment,Dr’s who REFUSE to learn about it and these
are FAMILY PHYSICIANS,how can they help refer out when they dont know,nor
believe in,pain disorders,especially RSD? KEEP UP THE GOOD
FIGHT,someday,we will be painless,God will know how we tried,and kept up
the Faith until HE called us home. God Bless You All,DONT GIVE UP. A
medication i have found useful, is Buspar,or Busparone. It is an anti
anxiety med,but it helps by a side effect that is mild,short term memory
loss that is slight,but just enough to forget the pain we are having. It
REALLY works for me. It also helps with blood pressure,i take it in combo
with the smallest dose of propanolol, and it keeps me relaxed, even when i
smack my foot,or the like. I use xanax, and valium to get to sleep. That
was one thing that became impossible, i worked for years with this,and
basically did not sleep,and i would have to get up and go to work in a very
dangerous atomosphere.What a relief to finally be able to sleep!! I do
have to take ms contin for pain. I remember taking tylynol=HA!,and i was
perscribed lesser pain meds,but we have pain that really does need PAIN
medications. Get a good psychiatrist,and LAYWER,PERIOD,workers comp will
lie,and try to get out of anything they can,you need a lawyer,and tell your
dr to refer you to a psychiatrist for ADJUSTMENT DISORDER,depression,and
sleep disorders, all secondary to RSD. This is what was done in my case,and
i got my Psychiatrist,and that HELPED A LOT,i got on the right
meds,often,antidepressants are NOT the answer,BUSPAR is better. You dont
feel like you can do this or that,and then get out of bed and hurt yourself
due to false feelings from the anti-depressant… I hope this is
insightful,and may help someone…Lv,me :^) ps,i have some videos on
youtube that may uplift your hearts,at least two of them anyway,check them
out at ConstanceHelwig. The videos are called Seek And You Shall Find,and
Life. Both set to Elvis Presley songs. I hope you like them,The Third is
about iran,not so uplifting…On 10/8/07, Crying Two Feathers rsds-cpt6210@lists.careplace.com wrote:
so, glad you shared your story!! I have also shared my dads story , he was a firefighter got hit by drunk driver, couldnt walk for 1 year he is now 60 and lives in pain…never give up hope…and stick together…yournot alone!!
Crying Two Feathers rsds-cpt6210@lists.careplace.com wrote:
Hi. My name is Lori and I have only been diagnosed with RSDS for four months. My RSDS showed itself loud and proud after I had my second arthroscopic procedure in my right knee. I had the first procedure after a bad car accident I was in back in May 1991.
The second procedure was due to more torn meniscus, arthritis, and a lateral release.
The day after surgery, once the local wore off, I was experiencing intense pain. I would take the pain medication and it did nothing.
Then during the night, I would wake up in excruciating pain in my knee. It literally felt like some had a large sharp blade that was being driven into the knee joint. I attempted to move my knee around to make it stop. Crying out in pain and begging for relief became a routine throughout the night along with extreme swelling. I had never swelled like this before in my life.
My doctor attempted physical therapy (which the PT team discontinued twice due to my pain levels), medications, a TENS unit, a muscle stimulator, and a cryo machine.
The only things that have enabled me to cope are the cryo machine and the TENS unit only in certain areas and now college courses that keep my mind busy.
The RSDS has spread into my lower leg, ankle, and foot.
My orthopedist has been shocked at the amount of swelling in my ankle and foot. This swelling has come about since I started college and I now sit with my leg down most of the day.
I have been to a pain specialist that attempted sympathetic nerve blocks and the STS ( a test spinal stimulator). None of them helped. As a matter of fact, the STS seemed to intensify some of the pain.
That particular pain specialist is not treating me anymore. I am starting with a new pain specialist next Monday.
Daily I deal with a pain scale no lower than an eight.
I also work for a prison (medium security) and cannot return to work since there is no such thing as light duty. That has been the hardest part of the this whole ordeal for me. I miss the other officers and the since of accomplishment I experienced there.
This is the reason I have started looking into a new career at the age of 41. I selected a major that would allow me to continue working with people and making a difference in their lives.
Unfortunately, my graduation date isn’t until May 2009. I will survive with my loving husband’s support.
I will contact the Montel Williams show about my RSDS. I believe the more of us that contact and speak about how RSDS affects us.
Lori