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RSD

Hi,

I have been living with chronic pain for 6 years now.  I have had 3 back surgeries on my lumbar.  I have permanent nerve damage in my back that affects my bladder.  I have scar tissue wrapped around a nerve in my back.  On 4/8/09 I was diagnosis with RSD in my left foot.  I have done research and have found that acupuncture , lidoderm patches, caudal inj., sympathetic block, and linocain injections all would help with the RSD. If anyone has RSD would you please tell me what has helped you.  Also what things have helped you from the RSD from spreading to other parts of your body(ie legs, arms, hands, and bakc).  Any information anyone can give me would be helpful.

Thanks
Tags: rsd, Pain, chronic, help
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547368_tn?1332173665
Hello RSD,

I am so sorry that you have RSD along with all your other pain issues. I do not have it so I cannot offer you any personal advice.

If you have done your research you discovered that the earlier this is diagnosed and treated the better prognosis. And you also know that spontaneous remission occurs in some ppl. That is what I wish for you.

Best of luck to you. I am hopeful that offers will post that have personal experience that may help you with your answers. Please let us know how you are doing. I will look forward to your updates.
Take Care, Tuck
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Avatar_f_tn
I really hate it for you that ya now have RSD on top of the pain of 3 back surgeries!!  My husband's had 3 failed lumbar back surgeries & I've got RSD. I've had it for 10 yrs. & I can honestly say that it's a living hell!  The severe, constant pain is really hard to deal with & will make you willing to try anything to get some relief.
   I've had 6 nerve blocks, a radio-frequency nerve ablasion & all the PT I could handle. The best things that I've found that helps the pain are rest, elevation, heat &  narcotic medications, I'm sad to say,but even that just takes the edge off. I'm never completely pain-free & my Dr. has told me several times that I never will be. There's a lot of pain that we RSD'ers "have to learn to live with".  I hate hearing that!!
    I realize that I have to learn to live with some pain, but I also think chronic pain patients are expected to deal with more pain than we should have to!! Medicines are made every single day to treat pain, even high levels of chronic pain, so why is it such a big deal to get prescriptions to treat chronic pain?  
     I'll warn you, too, that Dr's today don't want to deal with chronic pain patients, especially those of us with RSD because there's so much about it that's not understood, it doesn't always follow their pathology & there's no cure.  A lot of Dr's, especially those with big ego's, won't admit that RSD even exists because they refuse to believe there's a condition out there that they can't fix!  You'll even be told that the pain is all in your head!  I'm trying not to let all my negativity about this freakin' disease show, but it's hard not to after 10 yrs of this.
    RSD started in my R leg after a work injury where my leg was cut to the bone just barely below my knee, completely severing my ham-string & is now in L leg & R arm.  As far as keeping RSD from spreading, I don't know if anything you do can keep it from spreading but being very careful not to get hurt any place else will help.  The RSD spread into my R arm after an overnight hospital stay with an IV that got dislodged from it's correct position in my R arm. I could feel that it wasn't right after several hours & told the nurses that it was causing more pain than it should be & asked them to redo the IV but they wouldn't listen to me. The potassium that they meant to be going into my vein went into the muscle of my R arm instead, causing much swelling, bruising, etc., resulting in RSD. I don't know of any trauma that would've caused RSD to spread into my L leg. The only thing I can think of is that maybe it was the increased stress, strain & use trying to compensate for my R leg.
   Emotional stress can also cause an increase in your pain level!  Stress directly affects the sympathetic nervous system so you need to avoid all the stress you can. I know that avoiding stress is an extremely difficult thing to do, but your life really does depend on how you deal with stress when you have RSD. When I get upset & stressed out, my pain level quickly increases.
    Zanaflex is a wonderful little muscle relaxer if you need something to help control muscle spasms & uncontrolable, involuntary leg kicking.
  I hope I've been able to help answer some of your questions without putting out too much of my negativity about my situation. You can also find a lot of info at rsdsa.org & rsdhope.org. I've worked with both websites for most of my yrs with RSD.
    I wish you the best & pray to God that your RSD doesn't worsen & that you're able to keep as much normalcy to your life as possible!!  
                                        God bless you & be with you, baseball2005
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Avatar_f_tn
Hi...I've had rsd in both hands for a little over 2 1/2 years...right now I have a spinal cord stimulator. This I've had for 8 months. It's a trememdous help. .It does help alot with the rsd pain..most of the time the burning.  Please forgive me if i seem a bit jumbled. I call it rsd head...I guess it's the med's and such. Sorry
        Anyway as far as medications I take gabapentin...2400mgs a day. It's a high  dose, but it does help with the pain and burnng. Once in a while I try to not take it...to pretend I don't have rsd..like it's all a big mistake..The pain and burnng start to  get worse.So in goes the pills and other med's..cymbalta, avinza.... percocet...that's enough!.
        I too find that stress makes things alot worse. Relaxation techniques...deep breathing. I enjoy reading. Watching a good disaster movie.A little sewing..whatever I can try to do to get my mind off the pain.  I hope and pray that yours was caught early and into remission you go! I talked to a woman in my dr. office that went into remission after 2 years...that was 10 years ago..Well God bless you I hope for a low pain or pain free day! Anytime you need to vent..we are all here.
      I don't generally  talk alot..the typing really bothers my hands..as you can probably imagine! If you want to talk ..I will answer! take care..Tresa
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Avatar_f_tn
About rsd spreading..I don't know how to prevent it...mine seems to be spreading up my arms...I've had hot spots..where there is burning in my arms..I really don't know how to stop it...I pray there is one day a cure for us...
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Avatar_f_tn
I've has RSD since 2000 when I went into the hospital for a kidney infection and ended up on the RSD nightmare road. I've done nerve blocks, narcotics, denial, counseling. I am very lucky to live in an area that has doctors who understand and are sympathetic to RSD. I finally found a pain care facility that actually cares about their patients not just the money. I agree with the statements that stress worsens the condition, I am living proof of that. RSD is so individual to each of us that suffer from it, my advice would be to be presistant if one doctor is not meeting your needs keep looking and talking to everyone about your condition. There are more people out there that have the same issues but won't talk about them.

I had my 3rd nerve block in the series of 3 but no relief, I'm under alot of stress at work and I am feeling it, can't sleep due to the high level of pain.
Just pray and be strong.
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Avatar_f_tn
Hello, My name is Stacey. I have had RSD since 2005 in my right hand at first and now my whole right arm. I am now having problems with my left leg. Under testing at the moment and will find out soon if it is indeed RSD in my leg. I have had you name it it has been done to me or have taken. Nothing really seems to help anymore. I am at the point where I am immune to the meds and have been on all that is allowed to be prescribed. Spinal cord stim didn't work for me, it is different with others. Nerve blocks didn't block crap. I have had injections,lidoderm patches and acupuncture. I have really found that nothing seems to work. I must be a rare case that I have no luck. That doesn't mean in no way you will be the same. Everyone's pain is different and our areas and in general our uniqueness. Do research and give things a try. Since, 2005 I have felt like a human guinea pig. My pain management doctor wants to cut my nerves where it starts on my spine. That is really the last resort. I have told him NO! I have lived with this since 2005. Since there is no cure and Cutting my nerves really isn't a 100% guarantee at a better life I will keep things the way they are and do a lot more praying! I wish all of us that struggle with this disease a cure and many blessings. Hope that if my words can help 1 person then it makes it easier. Stay strong all of you! God Bless!
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