Reflex Sympathetic Dystrophy (RSD)

[cherribomb]

I've had RSD now for 4 years. Ive heard so many different stories from people saying i'll be alright to i'm going to suffer in pain and it's going to spread through out my body eventually shutting it down and killing me. i've also heard this is a "suicide" disease cuz people can't live with the pain. I just don't know what to believe anymore. Right now it's all in my ankle and foot but some times i have this bad pain in my neck and shoulder area and then sometime in the same leg. it fells like it's breaking. I think my shoulder pain is due to stress but i don't know if it's spreading or what. Does anyone know of anyone who's actually died from this disease? At my doctors office theres a guy there who's got it so bad he's going to germany to have his body shut down and restarted to see if it will help him. Right now he's in so much pain that he can't stand to be around people. I'm on xanax because i'm getting very aggressive. i use to be nice and could control myself. tonight on thanksgiving of all days my step daughter was nagging me and i mean bad. she's 29 and was up in my face just cussing at me and stuff and i ended up knocking her ass threw my favorite end table. she smashed it to kindle. I don't know what came over me. could this be the disease? personally i think she just deserved it. But i don't understand why i keep snapping like this. I've read alot of people's "Survivor" stories and they never talk about being depressed and stuff. I'm on 225mg of effexors and 3 of the footballs of xanax and still i'm freaking out. I'm also taking noroco's and opana for the pain. I like the opana some what. i think i need a higher does but the noroco's they only help short term pain. i try doing physical therapy but it hurts so bad that i basically do it at home and do it for only a few minutes here and there. Thank you carrie

So anyhow can anyone tell me the honest truth about what my life is going to end up like....

[Cozman]

Hi. I also have RSD in my foot and ankle area. There are times for me that my neck/ left shoulder/and left arm do hurt. You are not the only one with the aggressive or the mood swings. I thought the same thing you did that it "must only be me." RSD DOES cause depression. That is one of the main effects. If you would like to learn more go to this website and take a look around. www.rsdhope.org It is a great website for researching things on your own. You hang in there and be strong because it's not just you and you are not an outcast. I feel the same way as you as I am sure millions of others feel as well. Do not feel alone. Have a great day and God Bless.

[jamacai]

Hi, i'm 32yrs old and have been living with this in one of my arms since 06. I stay VERY depressed all the time and unable to sleep. I have a Doctor that has all but told me that I am lying about the symptoms. For the life of me I cant figure out why. Theropy is painful, but i still do it because i don't want this to get me down. i'm trying to fight this, but i feel that i am fighting a losing battle and no one undestands. Some days my arm feels like it is on FIRE, and other days it feels like it's about to FREEZE. It has turned lighter than my other hand. Nails grow like u would not believe. I sometimes get spots appear that looks like small bruses and leave after 1 to 3 weeks.I was growing hair on the parts of my fingers where rings should be until they put me in a brace to open my hand up. Some days is worst than others with the stabbing pain. The only thing that calms it a little is soking in hot water. Rain, cold weather, cold water, r the worse and doubles the pain. I also keep head pain bluried vision neck and sholder pain. i get 1 maybe 2 hours of sleep a night because the pain is so bad. its so hard to hold on to what little sanity i have left that just writing this letter i can't stop crying. I need a DR. who understands the pain that i am going through and is willing to help and not just look at it for the insurence side. I'm not trying to get rich here, All i want is my life back.

In pain and Feels like no one understands
north carolina

[ttuck]

Hey Folks....

I'm 44...a nurse..and diagnosed with RSD since Feb 2006.
Damp weather kills me, and I too have had a decrease in what was once 20/20 vision.
I suffer from the muscle spasms, pins & needles, headaches and the changes in mood.
These are the "bonuses" of RSD which of course include the "at site" complications.
My methods of control do not include psychotropic drugs because of the effects they cause to mental alertness.
I have had 3 operations to the left knee, as well as, 7 L2 nerve blocks and an injection of high frequency radio waves at the site. It has still spread to my lower back and right knee.
I employ a TENS machine and Interferrential unit for immediate relief, and have been given Quinine to deal with the muscle spasms. I have had minor successes with the application of accupuncture at the site ( improves circulation). I am presently awaiting the injection of radio waves to the L1,2,3 and 4 sites.
It has been a rocky ride...bankruptcy, depression and the impending loss of my 7yr relationship and subsequent fiancee'.
I am grateful to have this forum as it gives a sense of belonging at times to what has been a very lonely period because of a lack of understanding by those who do not suffer from this condition.
I have an excellent pain psychologist, and lean on my friends for support.
God bless and good luck to all...Thanks for your indulgence

[lwalker216]

Hello, I have had RSD in my right hand and arm since Feb. 1999. It was from a surgery on the hand and wrist. I'm 54 and female, live in East Texas (limited local doctors) and have managed to work as a clerk in a county office for the past 3 years.
When all of this started, I thought I had lost my mind. A simple surgery shouldn't have hurt the way it did. Even a breeze brought me to tears. The first few months were almost more than I could stand. I had all the tests, the PT, the blocks and the drugs. For a long time nothing seemed to work. I even had the spinal cord stimulator implanted. It helped, that is until the unit failed after about 8 months. I was newly divorced and flat broke. My insurance from a job I could no longer work ( Industrial electrician's helper) ran out. After about a year and a half, I was "awarded" SSI, not SSID or SSD. I had been a full time wife and mother until my divorce and didn't have enough credits for anything more than SSI and I had to appear before an administrative law judge to get that much.
In the beginning, I lived in Houston, Tx area and there are some great doctors there. Finding one willing to work with RSD wasn't too hard, but one willing to treat my everyday medical problems and RSD was another story. Money was also a problem. Getting to and from the doctor was a challenge because of the medications, the pain and the weird vision problems.
I moved to East Texas 4 years ago. The doctor situation isn't the best, but I manage. I met and married a wonderful man 2 years ago. I lost my SSI when I married, but it wasn't that much anyway. I found a job that gave me some sense of accomplishment too.
Currently, I am using a TENS, meds when I have to have them, and a lot of hardheadedness. Cold weather kills me. I have bad days and worse days & sometimes, I still cry. I have lost some movement in my wrist and fingers, but try to adapt. One thing I never got used to is a hand shake! We do that a lot in Texas and I have to be quick with that left hand and freak people out offering and upside down handshake.
I guess the short version of the story is that you keep on going. When you need to cry, do it. When you need help, ask for it and if you can't find the help at home, turn to one of us...we don't have all the answers, but we can tell you a bit about us and maybe you can find something in our story that will work for you.
Wishing you all the best,
Lona

[fireball]

hello, s an rsd suffer since 1994 i can tell you what your life will be like,and what you have to make of your life. first rsd does not go away it might go into somewhat of a remission but it will always be in your body. if in a remission it will usually present itself if you are injured again. rsd can be mild to weaar tylenol or mabe vicaden will takes the edge of for others we live on morphine,oral morphine and trips to the er to get ivs of diated. it makes our body swell spreads from one limb to another--burns like someone just lit your nerves on fire and at times yur circulation is compressed causing your skin to turn purple or a molted purple. your legs can become stiff and not want to move along with the arms. all things you learn to live with if on the right medication to deal with it. from what you have said you are no way on the right meds for rsd and have to understand your blow ups are due to the inner pain you feel and thinking others cannot see it or do not understand it. first of all you need to be on cymbaltal and lyrica they are antidepressants but also work on nerve damage(burning) you need a pain med that will take the edage off rather its tylenol 3 or morphine. you need to be seen by a neruologist who has treated rsd patients. or go to a pain management clinic they are wonderful as far as wmedicla procedures and what medications you should be on. p/t is great but if it is not done by someone experienced it will hurt worse and send u bacckwards. as for lashing out at your family--if they understand they will not taake it personaly--do all you can to educate them a good site is rsdhope it has a letter written for those we love. i hvae not known anyone to die from rsd and i have had it since 1994--however i get ulcers on my legs from the rsd---this last feb a bacteria entered one of the ukcers causing septic cellulitus and i was given a 50/50 chance to live--i cant imagine what my family went through--it had to be rough. i have no recolition of when i went to sleep on jan 29th and woke up while being transfered out of ic in the middle of feb. rsd is pain--burning pain--you need to discuss it with your family have them go to websites so they can understand what you are going through. in time like my family they can tell by my voice or facialk expression how i feel--you really need support and just rememberthere are web sites out there to help.

cheers!!!!!!!!!

me!!!!!!!!!!!!!!!!

[sammy157]

Hi cherribomb,
I have been living with RSD since 1997, from a broken foot, and two surgerys. I am going to be frank, and not to scare you, but explain what my life is. Keep in mind, the is hope for some pain control, with the right PM Dr. , if you find one who Understands! First I want to give you my opion on PT. Be carful!! Sometimes PT is not the answer! It was not for me, I don't have any at all!! What we, DR. and I,do is try to keep my pain level at a controlled level. I had the lumber blocks, but there are side effects form that. It depletes your calcum level. I had a hard time at the beginning finding the right Dr. Had one for 8 years, who did the lumber blocks, and desp. my meds. I have developed Fibromilyga, and osteoP. I have had to stop the blocks, which worked only sometimes, and was a painfull proc. Since I could not receive the blocks, he wanted me to go change Dr.'s...nice huh!! Well I was very lucky to find one that handels all my issues, and Understands..and will Listen to me!! (Very Important) I now have started, last month, receiving lido infusions, and it has helped with my Fibro. and RSD. I receive them once a month. I also get bursa shots for my hips, as I also have develped bursities (sorry bout the spelling). All these Dx's have develeped from my RSD. Yes it does spread, as it started in my left foot, and now it has traveled up my leg, hip, back and other side of my body. You Must find a good Dr. who knows about RSD and treats it with an open mind (one who will listen to you!!). I am at a point of, what I call under control, pain level. The pain never goes away, but it can get to a point to where you can handel it...again with the right treatment.As far as your mind, you must keep a positave attitutde!! You have to have faith, and face each day as new day, and try to say to your self...I Can Handle today..even if you feel you can't..Be Strong..pull your strength from your Maker!! Keep your mind Heathly, and do things to try to take your mind Off your pain! (I do Sudoka puzzles) That helps me put my mind on something else. I try each and every day, to stick to my rotuine. I find movement of my body, even if it's a little bit, helps rather then staying in bed all day. Sometimes I find staying in bed, only makes my pain worse. Don't get me wrong, there are times where that's all I can do, due to the Burning! That burning pain, well there is just nothing we can do about it but take our meds, and pray! I do get Flair-ups, and well, sometimes I have to go to the ER..hate to do that, but sometimes there is nothing you can do when you can't stand the pain, and all the med.'s you have at home just don't touch the pain! Just try to keep you mind in a good place,(not easy) but you have to try!! The mood swings, well they are what they are. Sometimes certin meds. can help, but it still happens. It is so hard to Make one understand, they just don't!! I have had almost the same fight with my 26 year old daughter, and she thew Her Kitchen table at Me!!! :( See You are not Alone!! We got over it by now, and some times we laugh about it, but I don't believe, to this day, she truly understands what goes on with my pain, and how it effects my actions and moods!! Don't get me wrong, she tries, but I truly believe, if you don't suffer from RSD, you just don't get it!
Well my dear, I am so sorry you are dealing with this Monster, but you have came to a Great Support site. Take what you need, and leave the rest! To sum this all up, Find the right Dr., and keep looking if you are not happy with the one you have. (That is the hard Part also!) Make sure you have a good PM Dr. who will work well with your Prim. Dr. also.
Laugh often, keep your Faith Strong, and know you are Not alone!! I will add you to my prayer list, as I pray for all here. Feel free to call on me if you need any support, or I can help in ANY way!!
God Bless You!
Sammy157

[ttuck]

Hello Folks,

Been away for awhile dealing with the reprecussions that always accompany RSD. I've had 2 more "in sito" Radio wave injections at the Left Knee and am now forced to wear two braces on each leg. The exyema that is symptomatic of RSD has spread and somedays I believe the itch is worse than the pain.
After being a test subject of various anti - depressants, we are finally settled on seroquel and chlonazipam to deal with the depression aspect of the condition. I guess my next visit will lead to a tenth L2,L3 block and I will be seeking new pain meds because the T3s aren't cutting it.
It is interesting to note that the depressive state that one enters can be varied, from clinical major depression to Bi-Polar spectrum. For some reason some folk never get to that manic state of full Bi-polarism, I guess its due to our acceptance of the condition, or our stubbourness in admission of defeat at its progression.
On the bright side I have decided to take advantage of the doors that have been forced open since my governmental declaration of disability has been officially documented. I will be returning to studies since I can no longer work as a nurse, they will be distance, but may prove assistive to people in my state. My course of study will be the Disability Management Diploma combined with completion of my BSc, concentration of socio-psycology.
Hopefully, I will become an asset to those who seek government assistance with accessibilty issues. Tired of being a statistic.
I continue to pray for good days for all of you, Cheers

[tazzwife]

Thank you for your story. It was so nice to read and now that is does get alittle better. I on the downward swing of it but always have faith tomorrow will be a better day. And your story keep that thought alive. Thank you
Samantha

[kellycrew]

Six months ago when I was diagnosed with RSD after incredible pain from a bunionectomy, I guess you would say I am in remission. There is hope.
I was lucky that the doctor diagnosed it within 2 weeks of my surgery and that I had excellent PT and a pain specialist who put me on Lyrica (the magic drug for me).
It has been a scarey ride thinking of living with this pain and being on a drug that made me so loopy, but I learned a lot about myself and have more empathy for others who are struggling. It was also horrible to feel the affected nerves spread to my mid-calf.
I went on a cruise at Thanksgiving time and it was a turning point. The good food, lots of exercise, and the stress free lifestyle really helped my pain. I started to ween myself off lyrica and haven't taken a pill since January 1, 2009.
My pain does come a few times a day, but I know it will pass and for the most part I can ignore it.
Anyway, just want to give some people hope out there that the throbbing, paper cut, stabbing, pringly pain may go away.
God Bless,
Kelly