Hello Everyone,
RSD is taking and taking over my life as well. Just two years ago I was an extremely active 44 year old Regulatory/Quality Assurance Manager that participated in amatuer body building and powerlifting competitions. To say that I looked like a picture of health was an understatement. I stood 6'2 and weighed 270 pounds with 8-10% body fat during non competition periods. Please understand that I am not attempting to boast or anything of the sort but I worked hard in my career and worked hard in my bodybuilding and powerlifting hobby and lived a very clean and healthy lifestyle with my loving wife of 17 years.
Then two years ago due to the many years of extreme weight training and a prior history of sports to include football up to the semi-pro level for 7 years my left knee had finally completely worn out. I began suffering an extreme case of arthritis as the joint was bone on bone and causing extreme pain with the loss of the ability to walk let alone any type of excercising. Through consultation with my orthopedic physician who happens to be a prominant physician in the Orange County California area, it was recognized that I had one of two choices either a complete knee replacement or perform a (High Tibial Osteotomy) on my knee. We decided on the High Tibial Osteotomy as this was expected to provide me with another 5 to 8 years of competitive type weight training once the healing process was completed to which the knee replacement meant the end of my hard working lifestyle as I knew it.
Then it happened! I had the surgery and somehow obtained a staff infection within my knee which would not heal and forced me to undergo a second surgery to clean the infection out. Once this surgery was completed I still was not healing properly showing signs and symptoms of a non closing wound, extreme pain, redness, swelling, burning etc. This went on for a couple of months and through this and many examinations by a number of specialists to include vascular surgeons, pain specialists, orthopedic specialists etc. I was diagnosed with RSD (Reflex Sympathetic Dystrophy) or to some as it is also referred to as CRSP (Complex Regional Pain Syndrome).
I have received and or tried everytype of treatment possible such as the Spinal block injections, Physical Therapy, Psychological Therapy, Electronic Stimulations, Oral Medications, Spinal Stimulators, etc. and all without any success. The only thing that seems to offer at least a temporary minor level of relief is the regimine of oral medications that I am on and it is amazing how the doctors are so hesitant to prescribe the medications. Seriously cant anyone understand that as an intelligent adult male I am fully aware of the risks of these medications but that they far out weigh the alternative!!!!!
This disease first started from my knee down to my toes on my left leg and then spread up to my hip so as to include my entire left leg, and is now beginning to show itself and appear on my right leg from my knee down. This disease is horrible as it has completely crippled me in my left leg. The pain is so horrible that I am not even capable of wearing pants as I cannot handle pants rubbing on my leg. I am unable to sleep in my bed with my wife as I cannot allow sheets, blankets etc touch my leg due to the extemely painful sensitivity.
Due to the extreme pain and inability to wear proper clothing I have lost my very lucrative, challenging and exciting career and now become permanently disabled. As a matter of fact this once proud powerful man now must depend on my wife to help me get dressed and undressed so that I can simply use the bathroom!!!!
I was once friendly, outgoing, confident and excited to be alive and now live as a shut in as a hermit due to the difficulty in relating to others because of my constant and continuous pain level as well as the extreme embarrasement from the grotesque deformity that has taken over my leg from the disease.
I have alway considered myself an extremely strong man whether physically, mentally and spiritually however I now live each day battling within myself on whether to wake up one more day or not. This is a non discriminant and horrible disease that does not seam to care whether you are male or female, small or large, in shape or a sedentary but is hellbent on causing as much agonizing, life destroying, relentless, mentally challeng pain as possible.
And maybe the very worst part of this entire thing is the failure of understanding by others for anyone going through this hell on earth. It is amazing how little even the so called experts in this field truly understand or at least care what I am going through. The insurance companies are another issue in the constant daily battle to prove reasons as to why I need my medications.
As the poster previously I too apologize for this book but there are so few that truly understand this as I do, I guess I would like to say thank you for allowing me to vent and I wish all of my brothers and sisters suffering out there from this truly devastating disease the very best and I wish you the strength that I sometimes feel that I am losing which is to keep fighting for another day.
Loading...
I had an elective surgery 4 yrs ago after which i had unbelievable chronic pain in my left leg 24/7 nad was diagnose diwth RSD. I tried hyperbolic therapy( 100% oxygen inhaled in a chamber) and it worked wonders for me. I still have nerve pain but nothing of the RSD pain. I would advice everyone who has RSD to please give it a try.
God Bless
Sam
Loading...
Loading...
Ty143, I totally, totally relate to what you're going through...let me give you guys the details...
I injured my knee at work in Feb. 2009, and it was initially deemed a sprain by the WC hack (I refuse to call him a doctor.) Well, it didn't get any better, and eventually after seeing him 4 times he referred me to PT. Therapy seemed to make the pain worse, and I was then referred to an ortho. He ordered an MRI, which "showed nothing major", they then tried cortisone, which helped for all of a couple of hours. So then he said it had to be the plica in my knee (google plica, I didn't know what it was before this either) and surgery was performed to remove it. After the surgery, the doctor told me that he had to debride ALL of the cartiledge in my knee, and that the cartilege has thousands of tiny fissures in it, and that I also have grade III Chondromalacia and Patellar Femoral Syndrome (once again, google.) He then commences to call me three times a day, for the next four days, even Sunday, to apologize to me. I don't totally understand why he did this, other than he acted like I was full of c**p and wasting his time. Well, I developed a DVT a day after surgery, which was hands down the most excruciating pain I ever experienced...until recently (we'll get to that.) Side note--prior to surgery, shouldn't they do some sort of blood work, or at least check your blood pressure before cutting you? Just wondering because they didn't. But I digress...
So there I was, recovering from surgery with this horrible blood clot in my calf. having to give myself injections of lovenox in my stomach and take coumadin daily to treat the clot. I did that for three months, and continued PT until Feb. 2010, when I was released by WC...in worse condition than I was before surgery. As these events transpired I noticed things about myself physically that were different than before the surgery and clot. For instance, before surgery, when in PT they would apply this compression sleeve to my leg that has ice water flowing through it, and it felt good to have it cranked all the way up an as cold as it would go...after surgery, I couldn't stand it as muxh, and as time went, I could tolerate it less and less. I also noticed that I have these awful muscle spasm, starting in the leg first and accompanied by cramps, and now it's most of my body that does this. I've also noticed my foot stays cold a lot, and as time has gone by, it's becoming more frequent and has encompassed that leg all the way up to my knee. Ultimately, I've been diagnosed with another disease known as Post Thrombotic Syndrome, which essentially is poor blood flow due to damage as a result of the clot. The blood pools in my leg and foot, since the valves in my leg don't work properly, and having PTS means I'll be suffering pain and cramps permanently, and I have a significantly increased risk of suffering a PE, aneurysm, heart attack, or stroke, and a high chance of developing another DVT. Good ole' workers comp...
Fast forward to a few weeks ago, I finally got an appointment with a pain management specialist. I didn't know what to expect, so I kept my expectations low. After all, I was more or less going to him because my knee is really messed up and I have chronic pain from the whole blood clot/perm. damage thing. Well, after he asks me a few generic questions (whats bothering you, how long, where) he begins examining me, and the visit goes off into another tangent. As he was running his finger along the outside of my foot, I noticed something--I COULDN'T FEEL IT!! He then tells me that the numbness, along with severe atrophy in my calf, and the hair on my leg/foot thinning that he thinks I have RSD. I had no idea what it was...never heard of it. since then, my new ortho has announced RSD as his prime suspect for my pain.
Uh-oh.
I've since then had an EMG test and triple phase bone scan, and have an MRI scheduled this week, and my ortho said if the mri doesnt show torn cartiledge then I have RSD (and I asked him "You think I have torn cartiledge?", to which he replied "no.")
As of now, I can't walk longer than 5-10 minutes, or sit with my legs down fore much more than 1-1.5 hours, and I have problems with my feet, legs, and hands swelling everyday (I'm using the speech function to type this right now), have problems with going hot-cold-hot-cold, get these horrible electric shock feelings more and more...but the worst is when my legs feel really cold, I'll grab a blanket to cover up, but it feels like it's sand paper. What's the deal with that? is the hair on my legs supposed to hurt? granted, it doesn't happen that often, but when it does I just want to go crazy. I'm currently on seroquel for the anxiety from all of this, lyrica, and percocet. The percocets help, but only last for 2-3 hours out of the six hour intervals they're prescribed for, so I thin I'm going to ask my PM doc to give me something longer lasting.
Guess my post turned into an article. Sorry about that everyone, just need to get it all out sometimes. i'm here to lend my support to each of you, so if you need it, you got it.
I thin the only thing worse than dealing with this monster is dealing with it alone.
I can toatlly relate with you feeling alone.
I have had RSD since 2008, its a living hell, I often think its a really bad dream and that I'm going to wake up, or at least I wish it was!!
I have had 5 surgies not including the one I had for my spinal stimulator. I had a stimulator placed to hopefully take away some of the pain. It has taken away some of the pain, but I think that the rsd had gotten so bad that the stimulator was placed to late. Everyday I feel like its a living hell, burning pain, pins and needles, swelling and you just feel like its never going to end. Its not going to end and I guess that's what we have to get throught are heads, this is what we have been given to live with, so we have just have to learn how to deal with it.
I like you and so many others would just like to know what to take to make it bareable, I'm only 42 and I would like to be able to live a little. AS far as sleep goes I havent had a good nights sleep in I don't know how long!! It sucks. ***this post is edited by moderator *** ***
private e-mails not allowed*** Please read our Terms of Use
I really wanted to return to work, I was a corrections officer and I had went to school for Law enforcement, went to the police academy and had put my heart and soul in to Lawenforcement, so when I had to go out I was heart broken. I have been trying to go back to work, but everytime I go to therapy my arm swells and I'm in so much pain. I'm all ready in pain everyday, would it be right for me to get a job and be misserable everyday?
I have been thinking about this and I don't think it would be fair for me or the employer when my body has no energy now, how would it be when I would be at work? My head spins everyday trying to decide what to do. I want to work, but can I?
Loading...
Loading...
I was diagnosed with RSD five years ago after a foot injury which required three fasiotomies and six weeks in the hospital. I also had to have a vena cava filter inserted due to the risk of blood clots. The surgeries required both a podiatrist, orthopedic surgeion, neuro surgeon and a vascular surgeon. Because of their skills and the grace of God, my foot was saved. After discharge I needed six weekly ambulatory surgical procedures. I so can identify with you because my pain is exactly like yours. It is unrelenting and agonizing. I am on methadone yet have a great deal of break through pain. I have been prescribed so many meds, the latest Lyrica. I have stopped it because after ten days on it , the side efffects are just not worth it. I have days where I think of suicide. I have days where I cannot bear any weight on my foot and need to crawl to the bathroom I see a therapist and take Celexa. I am at my witts end. Nothing seems to take away the pain. I can bear tolerable pain, but not extreme pain. I am unable to walk without pain control. My symptoms are just like yours so you are not alone. Thank you for sharing and giving me this opportunity to do the same. I just registered to this site because this disease has started to define me and I do not want that to happen.
Loading...
I take Cymbalta and hydromorphone for my muscle and nerve damage..Cymbalta some how stops the brain or receptors that cause my pain..My break through pain is helped by my hydromorphone... I had hoped to get off the naroctic and stay on the other one..but I can't..
Loading...
destiny070 wrote:
I also have RSD, Mine started after a bad car accident (flipped a car 3 times and was severely hurt) about a year later I started to get this burning pain in my leg, the burning pain got worse. It felt like someone poured gasoline on my leg, lit it on fire and someone was scrubbing it with a wire brush. That's the pain. Just something like your pants when you are walking swipe across your leg, hurts so bad. RSD is a horrible disease. There is no cure, only pain control. I have been on multiple narcotics for the pain, shots in my spine, a machine where leeds run up my spine and a little device is placed under the skin where it sends electric inpulses to try to ease the pain. Now I have 2 legs with the RSD and my right arm has failed the QST test meaning all nerves are dead in my arm so it's spreading to my arm now. It can jump to all limbs and can even go to your face. Right now, I take Lyrica, Cymbalta, Oxycontin and Perocet for break thru pain. They put me on Klonopin, because of the pain being so bad at times you just feel like you can't take it any more. Ambian because all the narcotics make it impossible for you to sleep at night. I also use a tens unit on my legs, once in a while it actually helps me take my mind off the pain. Steroids do absolutely nothing for RSD. My legs will get extremely swollen, they turn a whitish bluish color. My legs are often extremely cold, they feel like a dead persons legs (thats the best way to describe it) that bluish color and ice, ice cold. Nothing you do seems to warm them up, the pain is horrible. It's something I wouldn't wish on my worst enemy. It truly is hell living with RSD. They do have ketamine treatment now available in the United states, they do it in Germany it's a 5 day induced coma treatment with ketamine. In the US, it's a 10 day, 4 hour ketamine treatment. As of right now, not much is truly helps. The problem is, RSD isn't a widely known disease. It's not studied and researched as much as other diseases. Many people also believe RSD is all in the head, that people with RSD are making up the problems, the pain, the swollen legs, feet and arms. The ice cold limbs that turn blue. The truth is, RSD needs to be known, needs to be spoken about and needs to be studied more than it is now. RSD.org is a great place to look and get materials and help.
Hi destiny070,
I was diagnosed with RSD five years ago after a foot injury which required three fasiotomies and six weeks in the hospital. I also had to have a vena cava filter inserted due to the risk of blood clots. The surgeries required both a podiatrist, orthopedic surgeion, neuro surgeon and a vascular surgeon. Because of their skills and the grace of God, my foot was saved. After discharge I needed six weekly ambulatory surgical procedures. I so can identify with you because my pain is exactly like yours. It is unrelenting and agonizing. I am on methadone yet have a great deal of break through pain. I have been prescribed so many meds, the latest Lyrica. I have stopped it because after ten days on it , the side efffects are just not worth it. I have days where I think of suicide. I have days where I cannot bear any weight on my foot and need to crawl to the bathroom I see a therapist and take Celexa. I am at my witts end. Nothing seems to take away the pain. I can bear tolerable pain, but not extreme pain. I am unable to walk without pain control. My symptoms are just like yours so you are not alone. Thank you for sharing and giving me this opportunity to do the same. I just registered to this site because this disease has started to define me and I do not want that to happen.
I was put on Lyrica too and the side affects within three weeks cause my mouth and stomach to swell and was rushed to the hospital.. Than they decided to put me on Cymbalta and within two weeks my gosh no PAIN...However I also have hydromorphone for the breakthrough pain..It works well for me and no side affects..
Loading...
oojo wrote:
destiny070 wrote:
I also have RSD, Mine started after a bad car accident (flipped a car 3 times and was severely hurt) about a year later I started to get this burning pain in my leg, the burning pain got worse. It felt like someone poured gasoline on my leg, lit it on fire and someone was scrubbing it with a wire brush. That's the pain. Just something like your pants when you are walking swipe across your leg, hurts so bad. RSD is a horrible disease. There is no cure, only pain control. I have been on multiple narcotics for the pain, shots in my spine, a machine where leeds run up my spine and a little device is placed under the skin where it sends electric inpulses to try to ease the pain. Now I have 2 legs with the RSD and my right arm has failed the QST test meaning all nerves are dead in my arm so it's spreading to my arm now. It can jump to all limbs and can even go to your face. Right now, I take Lyrica, Cymbalta, Oxycontin and Perocet for break thru pain. They put me on Klonopin, because of the pain being so bad at times you just feel like you can't take it any more. Ambian because all the narcotics make it impossible for you to sleep at night. I also use a tens unit on my legs, once in a while it actually helps me take my mind off the pain. Steroids do absolutely nothing for RSD. My legs will get extremely swollen, they turn a whitish bluish color. My legs are often extremely cold, they feel like a dead persons legs (thats the best way to describe it) that bluish color and ice, ice cold. Nothing you do seems to warm them up, the pain is horrible. It's something I wouldn't wish on my worst enemy. It truly is hell living with RSD. They do have ketamine treatment now available in the United states, they do it in Germany it's a 5 day induced coma treatment with ketamine. In the US, it's a 10 day, 4 hour ketamine treatment. As of right now, not much is truly helps. The problem is, RSD isn't a widely known disease. It's not studied and researched as much as other diseases. Many people also believe RSD is all in the head, that people with RSD are making up the problems, the pain, the swollen legs, feet and arms. The ice cold limbs that turn blue. The truth is, RSD needs to be known, needs to be spoken about and needs to be studied more than it is now. RSD.org is a great place to look and get materials and help.
Hi destiny070,
I was diagnosed with RSD five years ago after a foot injury which required three fasiotomies and six weeks in the hospital. I also had to have a vena cava filter inserted due to the risk of blood clots. The surgeries required both a podiatrist, orthopedic surgeion, neuro surgeon and a vascular surgeon. Because of their skills and the grace of God, my foot was saved. After discharge I needed six weekly ambulatory surgical procedures. I so can identify with you because my pain is exactly like yours. It is unrelenting and agonizing. I am on methadone yet have a great deal of break through pain. I have been prescribed so many meds, the latest Lyrica. I have stopped it because after ten days on it , the side efffects are just not worth it. I have days where I think of suicide. I have days where I cannot bear any weight on my foot and need to crawl to the bathroom I see a therapist and take Celexa. I am at my witts end. Nothing seems to take away the pain. I can bear tolerable pain, but not extreme pain. I am unable to walk without pain control. My symptoms are just like yours so you are not alone. Thank you for sharing and giving me this opportunity to do the same. I just registered to this site because this disease has started to define me and I do not want that to happen.
I was put on Lyrica too and the side affects within three weeks cause my mouth and stomach to swell and was rushed to the hospital.. Than they decided to put me on Cymbalta and within two weeks my gosh no PAIN...However I also have hydromorphone for the breakthrough pain..It works well for me and no side affects..
Thank you for your response. I tried Cymbalta with no results. It sounds as if you are doing well and that gives me hope. Thanks again.
Loading...
Loading...
Loading...
Please email me back.
LIZ
Loading...
Guest wrote:
WELL THE COMBO I TAKE IS LYRICA,CYMBALTA,METHADONE,AND HYDROCODONES FOR BREAK-THRU PAIN AND AMBIEN CR SO I CAN GET AT LEAST 4 HRS AT NIGHT OF "OK" SOMBER. I HAVE RDS STARTING IN WRIST NOW RIDDEN TO SHOULDER AND LANDING IN BOTH KNEES AND FEET I JUST LOOK AT WHAT LIFE BEFORE MY ATTORNEY AND MY QUEST FOR A DOCTOR WHO KNEW I NEEDED HELP SO I WOULDN'T STOP WILL TO LIVE THE LIFE I HAVE TO LIVE IS HELL AND I PRAY FOR GOD'S HELP TO NOT LET ME QUIT THE PAIN GETS WORSE AFTER THE 2ND STAGE AND DEATH LOOKS GOOD I JUST NEED SUPPORT AND A FRIEND TO HELP ME I HAVE LOST OR THREW AWAY ANY REAL LOVE AND SUPPORT BECAUSE I WASN'T ABLE TO DEAL WITH ME DEPENDING ON OTHERS IT NEARLY COST MY LIFE! NEVER QUIT AND LET OTHERS HELP YOU BECAUSE IT WILL ONLY GET MORE WORSE! also............PRAY!!!
How did you get this rsd?
i have had rsd for over ten years now and it is getting harder each day my fleets hurt so bad at times i pray for god to take me i have had 17 shots it help but its comeing back out . i am looking for a docter who will help my doctor give me pain meds but whant more can i do can anyone help me. so i know how u feel if u know of some thing that can help me let me know.
Loading...