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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Lidocaine and Ketamine

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    Old 10-03-2009, 04:11 PM   #46
    aicirtapo
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    Re: Lidocaine and Ketamine

    Regarding Ketamine treatment. Have any of you heard about the woman from Collwood, BC (part of Greater Victoria) where I live. This is a true story and our TV and Newspaper have been covering it. Fern had full body RSD, went to Mexico with the help of Dr. Kirkpatrick from Florida, and was given the Ketamine treatment. She was in a coma for 13 days, but that was a couple of weeks ago and at this point she is pain free.

    Dr. Kirkpatrick had tried to treat her with drugs. You have to be pretty desperate to do this but if I had full body RSD I would certainly be willing to give it a try. Right now she is pain free but not out of the woods get. More treatment called for and we all know that the painfree state might not last but those on this website that are interested should follow her story as it seems to be working. Just do a search for Fern and Ketamine and you should find their website with interviews and details. Laura
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    Last edited by aicirtapo; 10-04-2009 at 08:10 PM. Reason: please do not post websites except as described in the Posting Policy

     
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    Old 10-19-2009, 08:13 PM   #47
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    Re: Lidocaine and Ketamine

    Hi All,

    Haven't been on in a long time the pain in right hand, arm, and shoulder make it to hard to type anymore. I have been having Ketamine infusions with Dr. Prager at UCLA I started the end of July with a 3 day and just had another single day infusion on Oct. 15. I also had the SCS implanted back in March but it stays off since it worked for a month and my RSD pain over rode sadly I now have RSD in my left hip and thigh from where the battery was placed it has been very depressing but I had to try something to get out of pain!! The 3 day infusion worked great I was at a lvl 10 all of the time and after the 3 days I went to a 0-1 for about 6 weeks before it started to creep back up and then my hip thigh started in. The 1 day was not as sucessful no pain relief so we are waiting to hear from Dr Prager what to do next!! Dr. Prager is a wonderful Dr. and very passionate about RSD and his goal is to give you back you life!! If anyone has any questions about Ketamine or Dr. Prager I would be happy to answer them!!!

    Take Care
    Shannon

     
    Old 10-30-2009, 06:45 PM   #48
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    Re: Lidocaine and Ketamine

    Hey Michelle,
    I am hoping this gets to you. I have been reading your posts, and it damn near brought me to tears. It's the thought that someone I know understands this thing, really understands it. this blows my mind. < edited > I am hoping you remember me, and think well of me enough to respond.
    Peace and out,

    Last edited by Administrator; 10-31-2009 at 02:19 PM. Reason: Please don't post contact, or personal information, per Posting Policy. Thanks!

     
    Old 11-12-2009, 07:57 PM   #49
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    Re: Lidocaine and Ketamine

    Michelle, did you have the 5 or 10 day infusion. How often do you go back for booster (more infusions)? Did you have crps1 or 2? i have crps2. most articles i have read are on crps1 and ketamine infusions. it's nice that you don't need as many meds. did you stay on your meds at regular dose while having the infusions? i agree i am new to rsd and i am surprised i havent read more people trying ketamine. did you ever try the scs? thanks for your positive info! Donna

     
    Old 11-17-2009, 05:52 PM   #50
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    Re: Lidocaine and Ketamine

    Hey Michelle,

    Longtime no see. I just wanted to pop in and say hi to you girls. Anyways.. Michelle, Ketamine has worked wonders for me. Started using it 4 months ago and it has given me my life back. Im now working with horses again and just got my trainers license today. My first horse runs wednesday.

    Ketamine rocks. It worked really well for me. Im still on opiates, but I can now go a full 8-12hrs on my feet training horses and actually survive.

     
    Old 11-18-2009, 01:55 AM   #51
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    Re: Lidocaine and Ketamine

    Hey all,

    I was reading the posts about the luck some of you have had with ketamine. Is there a difference from Ketamine infusions and ketamine IV therapy? It sounds pretty much the same. There is an rsd specialist here in the town I live in and he does "Ketamine therapy". You go in once or twice a week. I have been leery about ketamine but after last treatment I was recommended for and told that my odds were so low and risks were WAY to high,I am starting to think about it. I have to wait because I have no health insurance but am trying to find a treatment that isn't going to be just throwing money away as it would all be out of pocket. Just curious, trying to find something other than a handful of pills everyday and not being able to leave my home most of the time because air is one of my main battles with the rsd. Since I live in the Pacific Northwest and we get lots of snow here I'm once again stuck inside with heating pads,electric blankets and can't even wear jeans.
    Are the odds good in most cases with Ketamine? Last treatment I was recommended for was a 5 to 20% it would do "anything" good and lasting effects were about the same amount too. Thanks for the replies in advance. I hope everyone is having a good pain week.
    Take care and stay warm,
    Deanne

     
    Old 11-18-2009, 06:40 AM   #52
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    Re: Lidocaine and Ketamine

    Quote:
    Originally Posted by Michelle94 View Post
    tigerlily11,
    I started with the rsd in my right hand.. Well it actually started from herniated dics.. but I didn't start with the RSD symptoms until it hit my right hand. I experienced burning in the palm., minor swelling, color change.. I felt like pin were in my finger tips.. In about one month in went to the left hand.. same symptoms.. The burning was horrible.. I use to work at a drs office and in between pts I would hold a frozen water bottle to stop the burning.. Not knowing that cold is the worst for RSD.. My palm of my hands looked deep purple and red.. Looked like I had a glove on..
    Slowly it started in my feet well knees down.. I had a weird sensation.. electrical shock feeling.. very sensitive to my legs, but not if you touch them only if I would drop something on my foot etc.. In two yrs the pain just went through my body turning into a flu like feeling.. deep bone pain down my thighs.. My face would burn.. It comes and goes.. I wouldn't sleep at night.. I felt the erge to move around all the time.. Come to find out that, that was muscle spasms. I still get that... Usually I feel most of it the minute I sit down.. I would walk for hrs cause I was afraid to sit down... Then my feet started swelling only the bottoms, color change burning.. I couldn't even touch the floor.. You can tell when it spreads.. You get the electrical shocks, just a weird feeling I cannot explain...
    I want you all to know.. I am here for all of you... I know ita a long road.. but hang in there.. Never think negative.. It just won't get you anywhere.. Always think you will beet this.. Never let yourself get in that dark hole.. Its so hard to get out.. Talk about it as much as you need to.. Its important too..
    Love you all and thinking of you
    Michelle
    Michelle i would love my ortho Dr. to meet you. He is so ignorant to RSD. He says RSD doesn't spread and that it only was documented once in the 1960's! He also says how it is not chronic that is just gets better and goes away! He has no clue. I am looking for documentation/articles to take in for my next visit. Donna

     
    Old 11-18-2009, 05:14 PM   #53
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    Smile Re: Lidocaine and Ketamine

    Jon,

    Is that you? If it is, hi . It's nice to see you. That's great that you did so well with ketamine. How often did you get it? How did you get it? I just had surgery a few weeks ago (knee) and they did ketamin for one day through an IV....just to "keep" things quiet. Who knows if it did or not?!

    Anyway, it's nice to see you.

    Sharon

     
    Old 11-18-2009, 05:44 PM   #54
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    Re: Lidocaine and Ketamine

    LOL Ya, its me.


    I get it in the form of a nasal spray. Im allowed to use it on my bad days and it works wonders. It has given me my life back so im sticking with it. I was sitting on my computer the other night and thought I might pop in and see how my fellow RSD'rs were doing.

     
    Old 11-18-2009, 08:59 PM   #55
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    Re: Lidocaine and Ketamine

    Luvlifeagain,

    I couldn't help but to get all p'ed off when I saw your post and your doctor was saying rsd isn't chronic and doesn't spread.
    The first thing I would like to ask your doctor is if it's NOT chronic well then why did they officially change the name from rsd to CRPS,which is CHRONIC regional pain syndrome?
    I'm sure he has a good answer for that one,lol.
    If you are looking for good articles to take with you there is a great way of getting some really good ones.
    If you go on google and type in what you are looking for,before hitting enter for it to search go up in the left corner of the google page,where there is the web,images,video,etc. There is a more button. Click that and select "scholar" Then hit enter for it to search. It gives you ALL documents from clinic trials,to studies,and other research information. Some are in pdf files and most sites you can print from. They are ALL medical sites from doctor findings.
    I hope you are able to show him a stack of paper from doctors proving him wrong.
    If more doctors kept updated on these things maybe we all wouldn't get so angry and upset with their stupidity. If you need any help or specific websites that you can go to so you can see the different medical info please let me know.
    Anytime we can help each other educate our doctors on what is really going on is a big help to all of us.
    Take care and stay warm,
    Deanne

     
    Old 11-19-2009, 06:40 AM   #56
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    Re: Lidocaine and Ketamine

    Deanne Thanks for your input and how i can search the web. Michelle told me of Dr. S document and I found it yesterday and printed it for ortho. dr. but i will search for more b/c even though i am new to this it is so frustrating to hear conflicting info.from drs. Ortho Dr. even told me he recently went to a conference on RSD! No way. I am going to mention the change of name CRPS (CHRONIC)! That's a good one-thanks for that. I feel so much better now. Thanks for your help! Donna

     
    Old 11-19-2009, 12:31 PM   #57
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    Re: Lidocaine and Ketamine

    LuvLifeagain,

    No problem. Anyway I can help anyone is a blessing. I've been there before. It can be very frustrating dealing with this horrible disease,let alone dealing with doctors and trying to have them listen to you. I'm glad I've been some help. I've been there and I didn't have any help at the time and wasn't a member of the boards at that time so I had to fight with the doctors on my own. If you need anything else,anything at all please let me know.
    Take care and stay warm,
    Deanne

     
    Old 11-19-2009, 05:33 PM   #58
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    Smile Re: Lidocaine and Ketamine

    Hi Guys,

    Just as FYI, the "C" in CRPS stands for "Complex." However, any doc who says this isn't chronic doesn't know much about RSD. I just didn't want you going to your doc telling him misinformation because someone like him would jump right on your back about that.

    Jon,

    Glad you stopped by to see us. We've missed you. Glad the ketamine is working for you and you can work with your horses again.

    Sharon

     
    Old 11-24-2009, 11:22 AM   #59
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    Re: Lidocaine and Ketamine

    Michelle,
    i am new to the board but not to RSD or RLS. I have done so many nerve blocks w/ lidocaine that I have lost count. They were vert temporary for me. I have also had the nerve blocks w/ ketamine which was also temp. For almost 6 months my husband gave me ketamine shots once a week again...temp pain relief. I have been on and off all the pain meds and have been trying hyperbaric treatment. It seems to keep the pain at bay but again...i think it's goint to be temp. Trying to be positive at this point (3yrs) is really difficult!
    aunty hawaii

     
    Old 11-30-2009, 01:30 PM   #60
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    Re: Lidocaine and Ketamine

    hi i have rsd to sometimes u need someone just to talk to r u the same im 40 years old rsd has taken over my life for 6 years now but i get alot of support from family

     
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