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Hi, I need opinions of other RSD patients, on the best pain medicine. I have been using ibuprofen, but now I am considering to start with hydrocodone.

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Hi, patients effected by reflex sympathetic dystrophy (RSD) suffer great pain. RSD is a complex disorder that manifests with chronic, severe pain. Also skin and muscle changes are noticed. Many patients develop RSD after an injury. The treatment is not targeting the cause of disorder, but rather symptoms and pain is the major one. Pain treatment is a sensitive topic. If you take NSAID like ibuprofen, diclofen you need to have your liver function checked from time to time. Also, gastric and intestinal mucose can be damaged. So, they don’t represent a long term solution. Hydrocodone can lead to physical dependency on this medication, as it belongs to opioid drugs.
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Instead of getting n Narcotics, Look into a Dynatron STS machine. It does wonders for people suffering from RSD. I had 2 uncles with it, and I have have just been diagnosed. One of my uncles was in a wheelchair for three years due to RSD, but he was put on the machine after he was diagnosed and he was up and walking again! It is just something you use every night for the fiurst three or so months, then just a couple of days a week. It also has protocols for other illnesses. A doctor from Corpus Christi, TX invented it (he is a RSD specialist). Just look into that before doing steriods. I tried that once and I gained a lot of weight, and didn't get near the results as I did from this.
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The best pain killers are always those that meet your need to not experience pain most adequately while minimizing the risk of side effects, including addiction. Have you looked into nerve block medication and pain shots, perhaps? If not, discuss this with your doctor. If you need to be on antidepressants, which can help, and corticosteroids, your doctor will offer you that guidance. 

Hydrocodone can be pretty addictive, so I'd stay away from that unless your doctor agrees that you definitely need to take it. Explore other options first and avoid becoming addicted to pain killers if you can do that at all. 

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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!!!
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How did you get this rsd?
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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.
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I also have RSD, the pain is horrific. It's very difficult to hold down employment due to the pain. Just to get up every morning out of bed is a chore in itself. I take pretty much the same medication as destiny070, they have added the fetynal patch as well with me. It's a very hard thing to live with day to day and not many understand what someone goes thru day to day with RSD.
I wish everyone the best of luck in their treatment. RSD.ORG website is great, have been there.
Also, there is a great doctor in the Philadelphia area, his name is Dr. Schwartzman. I think he is the king when it comes to RSD, he use to take his patients to Germany for that treatment. If it wasn't for him, the treatment wouldn't even be in the US right now as it is. The best is to find a dr. who knows and studies and is up to date with RSD and the treatment plan for someone with RSD. That is the hardest to find. Someone who knows and understands RSD.
I wish nothing but the best to everyone. Have a Happy, safe and painfree New year!
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What is RSD?
I have been in terrible pain for about 6 yrs. Underwent neck surgery 2 yrs ago and the pain worsened.
I'm scared! The pain keeps moving to other places throughout my body over time. I feel like my muscles spasm all the time. They are tight and tense. Then there is an issue with nerve pain.
I haven't had any test for over a year ( I gave up! and since I can't work anymore because of this can't afford more test that show nothing!) but previous test including MRI's always showed all was well in my neck area.
Is this something I need to look into?
How did yours start? What symptoms do I need to compare?
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I was on Thorodol, Naproxen, Oxycontin, Perocet and too many others meds to list that also barely scratched the surface of the pain. I was also chasing all these pain meds down with so many different prescribed sleeping pills that ....... bottom line I was still suffering greatly and would have heart palapation with blurred vision from some of the different sleeping pills and never being able to reach REM sleep for weeks at a time.

During this nightmarish time I did find some relief from learning to lower my heart rate thru a meditative state. I was able to get my heart rate so low that my blood pressure wouldn't measure and I remember them struggling to just find my pulse. The only problem was that I was pain free during these times (2 hours plus) but I could never reach a point where I was able to actually shut down and get REM sleep.

But now I've been 85%+ pain free for 15 years thank GOD to a Surgical sympathectomy, and have resumed a fully functional life. And I thank my good fortune to that my family doctor who was on the ball and caught my RDS very early. Also for the record I crushed my left hand in an industrial accident, breaking three fingers at the knuckles. And today I have 60% use of the hand, 50% lost dexterity (can no longer write with my left hand), I've gained back about 50% texture feeling, and I also can not tell the difference between hot/cold other than it's different then my body temp. Lastly my two middle fingers on my left hand are always about 30 degrees from straight, but they bend and do function but are noticeably weak compared to my right hand (140PSI in my right hand and only 100PSI in my once dominate left hand)


I hope that my first ever BLOG posting is able to give at least one fellow RSD suffer at least a small glimps of "HOPE for a good nights SLEEP."

L8R Mark
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i have rsd
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Hi Everyone,

I have RSD- I was diagnosed as of 3 months ago, I am assuming I probably had it longer than that b/c My Dr. Said it is very hard to diagnose & RSD is Rare too. I got injured as of January of 2010, I was a runner & exercised on a daily basis. Until that one day, I got injured what happened was; I went running, did some aerobics & did kickboxing--I guess my body did not like kickboxing so well b/c when I went to kick I landed on my left foot wrong & My knee kind of buckled. I injured my knee & My Sprained my Ankle. I went into the emergency Room & they referred me to a Orthropedic- & they requested did a Xray & they said I had sprained my ankle but the knee- they couldnt figure it out. so they did a MRI on me-They Thought That I possibly Torn a Miniscus--but the MRI Showed a result of No torn miniscus. So They didn't know what was causing me so much pain. I went to another Orthopedic to find out what was wrong b/c I was going crazy. Feeling Tremendous amount of pain & not knowing what was wrong with me what literally driving me insane. Finally, I found the Right orthropedic in April of 2010, He did a MRI on me & Xray of course--IN my MRI you can see all,well most of my nerves *literally* What happened was I sprained a ligament & my cartilage. He also diagnosed me with RSD Stating I have all the symptoms. I had no idea what RSD was--I researched it & I couldnt believe that this is what I have--I have every symptom of it. I had discoloration on my feet & was feeling like there was pins in my Left knee- (As Destiny070 said: It felt like someone poured gasoline over my leg & lit it on fire.) I am sweating & my leg feels cold but I'm feeling it hot inside of my leg. It is very hard for me to move and walk-I am walking with a limp & my leg will not straighten out. If I try to it trembles & I am in exscruciating pain. I am now experiencing I guess the hardcore part of it, dealing with this is a mission--Every morning when I get up It hurts me just to use the bathroom, it seems as if every step I take, It hurts. Trying to do daily normal things that we usually do everyday is a big mission. I cant walk around in the stores or in my house for a long period of time, If I do, Forget it I am in unbearable pain...I am just trying to adjust to this, and I am trying to learn how I can adjust to it. My dr. put me on Mobic for anti flammatory--& Darvocet. I am feeling like its not enough--I mean it helps take the edge off but the pain does not go away.
So I get very irritable--and moody. I try to meditate & do breathing patterns b/c I am trying to go by the book & do it dr's orders.

The other day, I went to the DR. for a follow up --I tried to ask him if he could possibly give me another medication or maybe up the dose b/c I am starting to feel it more intensly and Now I'm feeling it up my Thighs & down my leg. I'm starting to feel my ankle hurting here and there and the burning sensation around my ankle. He insisted that I stay on Darvocet-with the same dose which is 100 mg.
His nurse instisted on "Lortab" but He said he didnt want to get me "addicted". So, I am going by doctors orders--& trying to somehow get through this pain--I was thinking maybe some chinese acupuncture may help as well??? I am new to RSD--I would love if I could have some advice from RSD patients b/c I want to learn more about this disorder. My doctor explained to me that RSD is nerves that are spasming out & causes pain. That It comes from the spine & he wants me to see another doctor that will Give me injections in my spine--called " sympathetic" injections--That its supposed to help and heal my RSD???? I am very skeptical about someone poking me in my spine--When I heard this I became very depressed b/c I want to get better But I dont know if this is a good decision having someone injecting me in my spine.. I have read up on RSD and seen that some patients state that It doesnt work??


Help me please, :( I really, Really need help on some advice--It feels good to know that there are people out there that understand what I am going through--At least someone can relate to me... :) I would truly appreciate if anyone, anyone can help me and give me some good advice. It would truly help me and make my worriness calmer--Then at least I could know more information & secure about what to do with my RSD. I truly do believe knowledge is power & with RSD not being out there as ADHD is or other disorders--RSD is what we dont hear much about..and it needs to be out there and spoken about--& I need to be my best advocate for myself..the only way to do it is to find more information out on RSD--I know what I have, but I need to speak with others that have it already & know more about it--So I can then, know more about RSD. ---So please if you're reading this & you can relate to me...HELP ME!!

Thanks.



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Hi, all....
I'm not sure if I have RSD or not. The doctors don't know what's wrong with me. RSD is the latest guess. About 2 months ago, my left side suddenly went weak. Thinking stroke, my family doctor had me get an MRI done of my brain (which was normal) and my cervical spine - for lesions (also normal). A couple of days later, I noticed my left hand turning blue and purple and getting very cold. I went in to my dr, and he could not find a pulse in my left wrist. I was sent to the ER. The dr.'s there used ultrasound machines and still couldn't find a pulse, so they did an ultrasound of my heart and an angiogram looking for clots. Again there was nothing. I can not think of any trauma I've had to that side of my body, or anything at all. I get some cramping along my left arm but that's all the pain I have (thankfully). The coldness seems to be spreading up to my shoulder now and my cardiovascular doctor wants me to get a nerve block injection done. That seems to be about my only alternative for now, b/c nobody else has any ideas....
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I have had RSD dx ed in 1968 but it took years for anyone to believe I really hurt . I have tried nearly everything (but no more I feel Ive done my part ) AVINZA is by far the best pain killer it is Morphine but made differently and it works much better than any other Morphine it says on the Directions 1 every 24 hours but I need 3 of the 120mgs and 2 of the 60mgs unfortunately they are about $15 a peice which i cant afford so take rregular morphine and sometimes I trade it for a month with 40 mg Oxtcodeinone(percocet)which barely helps I have had rsd probably 50 years Doctors tell me oh its burned out by now but it hasnt you know if you have RSD or it has faded away ,when you hurt 24/7 there is absolutely no high to any med unless it gets me out of pain (I imagine that would be a high)

Gentle Hug rsdno
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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.
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