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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • rsd help needed

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    Old 01-17-2016, 08:23 AM   #1
    mia478's Avatar
    Join Date: Jan 2016
    Location: Dallas, Texas, United States
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    mia478 HB User
    Unhappy rsd help needed

    Hi I've had RSD since 1994 and fibromyalgia since a teenager. I know have DDD, osteoarthritis and at times deep depression over this God awful pain. The RSD is now in my left leg/foot/right leg/foot, left hand/arm/shoulder/neck. I have a pain mgt doctor but she keeps pushing injections which i've told her already don't work. we tried a stellate injection to calm down my right arm enough to use it without crying the first injection caused a droopy eye, and the second helped some but after a couple months the pain is coming back and i still can see a bit of the droopy eye on my right eye.

    I checked with a rheumatologist and he referred me to pain management. I'm on lyrica, cymbalta, celebrex, amatiza, ambien, valium, ms contain, and hydrocodone for break thru pain. I also have a scs which at this time runs out every 1 1/2 days which is really aggravating b/c it takes 5 hours to recharge!

    I need some real help.

    Last edited by Administrator; 01-17-2016 at 08:49 AM.

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    Old 03-10-2016, 05:46 PM   #2
    Join Date: Dec 2014
    Location: Port Washington
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    Robyncc HB User
    Re: rsd help needed

    Hello mia478! So sorry for your terrible health luck. I'd like to be the one to give you the answers to your questions, but I'm almost in the same predicament with full body RSD, chiari malformation, migraines, DDD, and torn rotator cuff. Even with all my pain, I get out regularly and walk. But only when my body says so. Nothing strenuous, just a good half hour walk. I was on some of the meds you are on, but got off most. I hope you find a great pain doctor who listens to you, plus have a family that stands by and helps. Has that pain doc done anything for your droopy eye? Sounds like he/she didn't know how to do injections! Will your eye rectify itself? I'm sorry for asking, but I'm not familiar with this, although I've had 13 steroid injections for my rsd. I was never told droopy eye could be a side effect.
    I do know that when we do exercise or do anything, we pay for it. Do you have a good exercise routine? My doctors have told me to stay active or the rsd will take over, so I try. I'm sure you can relate. Hope this helps a little, I'm glad to see you on the boards! Don't give up, new meds are being researched every day!

    Old 03-23-2016, 06:52 PM   #3
    AnnaDuffer's Avatar
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    Location: Houston
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    Re: rsd help needed

    I am sorry that you are having problems. I live in large city and I can not find help. No one seems know what to do or take responsibility for treating this. I was just recently told that I have CRPS 1 but was told that it would eventually burn itself out in a year or so. During the mean time, I have received no medication for this...only 2 weeks of OT. I do not think I can take this for a year. The pain and stiffness is unreal. My was a result of LTRI surgery. Good luck to you. I am in the process of trying to get in a clinical trial for a new IV medication that was used in Italy to treat Padget's. Go to the NHI website and do a search for CRPS1 clinical trial in your area. Good luck!

    Old 03-24-2016, 06:04 AM   #4
    Picobill's Avatar
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    Location: Hogansville,GA,USA
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    Re: rsd help needed

    mia478 Hi and sorry you're having such a hard time.. I took an express route with my CRPS. I had carpal tunnel surgery in 2008 and SCS implanted in 2009 which was pretty much useless by the time I'd healed from the surgery. My Pain Dr at that time said he'd never seen such an aggressive case. The implant also developed a MRSA infection by year end which meant it had to go. Beginning of 2010 my left side was all CRPS with my lower back where the implant had been also CRPS.
    Bottom line is that today I'm full body with CRPS and have known since 2010 that the only treatment that might help me is Ketamine infusion which can be hard to get insurance to pay for. Fortunately I'm also a Veteran and I was able to get coverage for my pain Dr through the Veteran's choice program and I've just completed my first Ketamine trial and am anxiously waiting to schedule the full procedure. For me at least Ketamine Works! Once the after/side effects of the Ketamine cleared from me on Monday I felt at least a 30% drop in pain in some of my worst locations and even my very bad and sensitive Allodynia was moderating. While the first 2 days were almost magical in how much better I was feeling the effect has been slowly fading and my pain returning so far though not to it's previous high level and it's responding better to my meds. The Complete procedure my Dr tells me runs twice as long as my trial and it's done for 3 consecutive days. All I've read on Ketamine says that it's blocking of different channels makes it more effective than all the Opioids for pain relief and the Ketamine procedure acts like giving a computer a reboot when it gets stuck.. in this case our bodies/brains are the computer and the Ketamine is the reboot. There is even a German Dr. who takes things to the limit and puts people into a 5 day Ketamine Coma infusing high doses of Ketamine the entire time but that therapy is not approved by the FDA for use in the US.. German Dr. has office in Germany and a clinic in Mexico but it's very expensive. The up side is that many Drs have had good responses with just the Ketamine infusion. You might want to ask your Dr about this or find a Dr that does the procedure in Dallas. I'm very hopeful that this can be my rescue from CRPS and it might be yours as well. Wishing you low pain and Good Luck!

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    Old 04-25-2016, 04:14 PM   #5
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    Re: rsd help needed

    I also started Ketamine and found it to be a miracle sent from heaven!
    I have had RSD since 2009 lower left extremities at times could not walk due to deformed foot from the RSD. Ketamine was my last chance at some relief. I had a scs put in but developed MRSA at surgery site and had to have it removed almost died due to severe reaction to the antibiotic. Was hooked on pain meds and thank goodness my sister got me help.

    anyways I was wondering if you still have ketamine infusions, I have an all day infusion at least every 6 weeks. Would love to talk and compare treatments.


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