Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-24-2009, 06:43 PM #11
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YW Daniella! No matter what we must never give up hope. There is also hyperbaric oxygen therapy(HBOT) which has helped a lot of people too. HBOT isn't covered by insurance though unless it's for an approved condition. The money to do HBOT is usually the stopper for most people because we don't have it and most likely never will. I wish I could get it done but know I'll never have a few thousand dollars unless I win the lottery. LOL

Hugs,

Karen
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Old 04-25-2009, 06:51 AM #12
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I looked into HBOT and was going to do it and may but this doc thinks it won't do much. He did suggest acupuncture though not in the areas effected and I talked to the lady yesterday so we will see. I think I will start with this iv and the new meds and go from there. Thanks again
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Old 04-26-2009, 03:19 AM #13
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Default Lidocaine helps

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I am going to post this here and on PN so if that is not ok I understand and you can delete one. I have RSD and PN as of now but they are still looking more into figuring this out. Anyhow my new pain doctor set out a treatment course starting with the lidocaine IV infusion which I think is a few hours at the hospital and then possibly oral. We are trying to do a few more less invasive things before the temp scs which is a possibility as well. Anyhow can anyone tell me how they responded to the iv and what relief if any,for how long,and side effects?Thank you
Hello there..
I get subcutanious lidocaine infusions every month here in BC Canada and they help me quite a bit, it is left in for 8-10 hours and I take it out myself at home. When I first started the infusions they did an lidocaine IV tester and hooked me up for just over an hour, the nurse asked me questions every now and then about my pain levels and any symptoms. I noticed a little bit of nausia and a headache towards the end and ear ringing so I let the nurse know. I think they may have judged my starting out subcutanious dose on that, but I am not positive (they go by weight as well).

Results didn't last very long, less than a week, but enouph to know it would work well for me.
Side effects only last while you are hooked up and they can be drowsiness, disorientation, slurred speech, respiratory depression, tinnitus, muscle twitching, seizures, slight nausea and/or headaches. Lidocaine is well-tolerated and is relatively safe they say.

Lidocaine got me out of my bed, I was haing a very dificult time with clothes and any slight touch hurting and a breeze anywhere would raise my pain levels sky high, after my first dose I could tollerate more and more it seemed as the treatments went on.. I started in May and by summer I was able to sit and weed in my garden even when there was a slight breeze! And when I think now of what pain I was in before I started these infusions.. my life was going nowhere fast.. I saw no hope before, everything was so oversensitive, even sounds hurt me..

This works for me and I just wish we were all the same so it could work for all of us, it is not a cure, not even close.. but I can laugh again and play with my grandchild, do a chore or two if I pace myself and even walk a few blocks. I hope this can help.

Sandra
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Old 04-26-2009, 07:35 AM #14
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Thank you and I am glad you are seeing benefits. I am not expecting a miracle and any relief at this point I would be thankful. It is more I think a starting point of treatments with the scs being the last. What I did like about this pain doc who is doing this is he had a plan if this does not help or if it does but was open to what I wanted to try. Anyhow I have never read about the one you take home. He did say he has a patient who comes in monthly and some he puts on the oral. Well thank you again I like hopeful stories
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Old 04-26-2009, 06:09 PM #15
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Default HI..

The diffrence is subcutanious lidocaine infusions meaning into the tissues systemicly, they only give em to patients who have more than one area effected I was told.. because it floods the whole body, I now have full body RSD. They look for fatty tissue to place it in rather than a vein, and though they use a needle initialy they replace it with very thin tubbing soas not to be so invasive usualy..
I will try to post pictures next time I get an infusion done.

Take care and good luck,
Sandra

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Old 04-27-2009, 08:47 AM #16
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I think I read about what you are talking and they showed it but I could be wrong. The one I will have though is just like an iv bag right for ex if you get fluids like when you go to the er but there is meds in it? I am sorry you have fully body. That is hard as I have now both legs and possibly eyes/ear though it may not now but something neurological/ Well many thoughts and thank you
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Old 04-27-2009, 11:32 AM #17
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Angel rsd did you recieve any benefits from this and was it the 2-4 hour one and any side effects?
Galena thank you for the hopeful story I appreciate it
it was an hour infusion if i remeber correctly.. i didnt help with my rsd tryin to remember tho so i am no help there this was all the way back to 2001 soo its been years.. LOL and i cant remember my name sometimes LOL

carrie
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Old 04-27-2009, 07:28 PM #18
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I had one hour of the lido IV infusion. I had no pain for my entire body for only 15 minutes. It was heaven. Unfortunately, pain has gradually return after the infusion stopped. Does insurance cover this treatment? I wonder whether or not i should try for longer period.
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Old 04-27-2009, 07:29 PM #19
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Danelia,
Did you have pudenda nerve issues?
Numb
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Old 04-28-2009, 05:42 AM #20
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I hear it is very limited amount of time of relief. I think this doctor is usuing it as more of dx of what is causing my pain more. I have peripheral neuropathy and rsd. Not what you stated but who knows anymore. So many doctors and so many opinions.
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