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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Rsd/crps

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    Old 04-02-2013, 05:30 PM   #16
    snowman2
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    Re: Rsd/crps flare ups

    Hello i wanted to know whay peaple are doing when you have a RSD flare up , i have them every day and they last around 3 hours and the omly thing i can do is wait for it to pass sometimes i sit in the hot tub or play relaxation tapes but i worrie what is going on with me my doctors gave me this new drug called ucynta or another word for it is tapentadol 75mg its very strong but thats all i have left to reach for its helpfull for the pain but doesnt stop the flare up any ideas that work would be appreciated thanks snowman2

     
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    Old 08-05-2013, 12:34 PM   #17
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    Re: Rsd/crps

    Quote:
    Originally Posted by TrustinHim4life View Post
    Hi, this is my first time using this website so I hope it gets to you. I also have CRPS and I have tried all these medications. None of them worked for me either. I had all kinds of crazy side effects. You must be careful of serotonin syndrome being on all of that too! I just got my spinal stimulator placed in last Tuesday. I just got turned on yesterday but it's going to take awhile to get used too. But it's like my last option so I pray that it works!! I also got really bad insomnia from oxycodone. I found that pain medication didn't even touch my CRpS pain so I got off it. I now am suffering from depression and anxiety which is getting much better with medication and therapy. I am taking Prozac, Wellbutrin and remeron. The remeron is what I take for sleep and it has been amazing!! I recommend it, I only take half of the dissolving pill at night. But my nights are the worst because of CRpS pain and since taking this it had been better. I hope this helps!!

     
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    Old 08-05-2013, 02:13 PM   #18
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    Re: Rsd/crps

    Quote:
    Originally Posted by TrustinHim4life View Post
    Hi, this is my first time using this website so I hope it gets to you. I also have CRPS and I have tried all these medications. None of them worked for me either. I had all kinds of crazy side effects. You must be careful of serotonin syndrome being on all of that too! I just got my spinal stimulator placed in last Tuesday. I just got turned on yesterday but it's going to take awhile to get used too. But it's like my last option so I pray that it works!! I also got really bad insomnia from oxycodone. I found that pain medication didn't even touch my CRpS pain so I got off it. I now am suffering from depression and anxiety which is getting much better with medication and therapy. I am taking Prozac, Wellbutrin and remeron. The remeron is what I take for sleep and it has been amazing!! I recommend it, I only take half of the dissolving pill at night. But my nights are the worst because of CRpS pain and since taking this it had been better. I hope this helps!!
    How are you doing with the stimulator ?

     
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    Old 08-05-2013, 11:38 PM   #19
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    Re: Rsd/crps

    Hi there all,
    I'm new on this site. I've just recently been diagnosed with CRPS & I'm struggling with it.
    I have it in my left arm (my dominant arm) - the burning pain shoots up and down my arm 24/7.
    I'm on similar drugs described here, duloxetine, amitriptyline, gabapentin, celebrex & oxycodene. I feel like a walking zombie.
    I've taken loads of sick leave, but am trying as hard as possible to maintain work - I need money for all of my doctors bills!
    I'm having a nerve block this week & hope for some relief there - has anyone had any luck with these?
    I'm seeing a great group of doctors at a local pain clinic - pain specialist, pyschologist & physiotherapist.
    It's a massive rollercoaster ride though - physically and emotionally. My partner is as helpful as he can be, but as you all say, they don't really understand the pain so it's great to have this forum.
    I'm based in Australia, so I'm not sure if there are any "locals" on this forum. I've only just started to do some research to understand this pain & Dr Google doesn't have much nice to say about CRPS.
    Good luck to all those "coping" with this. If you have any advice or tips on coping, please let me know. I'm all ears at the moment.
    thanks for letting me dump my feelings.
    Kimbokimbo

     
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    Old 08-06-2013, 04:06 AM   #20
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    Re: Rsd/crps

    I know that with me learning what meds to take was a huge part of this as I was taking a lot and it helped for awhile but then one by one I had to remove some for the side affects where causing problems like the gabapentin 3000 mg a day made me feel like a zombie and I couldn't have a good conversation with my partner so I stopped that one , it really didn't help much anyway and the amatriptoline helped me sleep but then I couldn't be with my partner so I stopped that one , and the pain meds don't help much either I've taken them all the only one that works is oxycodone and vitamins . As far as nerve blocks since I was diagnosed I've had over a hundred in 2 years but now they don't help either . Rest is good , I've become disabled since I got this RSD so we have money for I can't work . good luck snowman2

    Last edited by moderator2; 08-06-2013 at 04:50 AM.

     
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    Old 08-06-2013, 04:24 AM   #21
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    Re: Rsd/crps

    I just wanted to add that having people to talk to has helped so much so I'm glad you found this place to talk how ever you want some people just talk on the threads and that's great , hope to here from you again snowman2

     
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    Old 08-07-2013, 02:04 PM   #22
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    Re: Rsd/crps

    Quote:
    Originally Posted by exyeti View Post
    Hi,
    I've had CRPS in my right wrist for 2 years, here are some of the meds tried:
    Gabapentin -- made me really spaced out and had little effect.
    Pregabalin -- much the same.
    Cymbalta -- Made me really ill so had to stop taking.
    Steriods -- no effect.
    Tramadol -- limmited pain relief, but unable to work with them.
    Amitryptaline -- use it now to aid sleep, works well on a use when needed basis.
    Oxycodene - Use it to take the edge off pain.

    In my experience there has been nothing medication wise that has completely stopped my pain. The only thing that i personaly have found to work is electro stimulation.

    Regards.
    hey snowman. I have rsd in both legs now in fact everywhere below the belt, in both arms parts of my back now and head. It all started in one leg.
    first they put me on neurontin(gabapentin) boy that one sucked. i was a walking zombie, I couldnt hold conversations at all as I couldnt remeber how to talk, My memory sucked my family said I would go to a movie and not remember it. so I had to watch all the movies again when i stopped taking it
    Oxycodone.. still taking it, and if my mind is in the right place it helps take the edge off bringing me down from 10 to a 9.

    lyrica.. nope I dont believe it is doing anythng for me
    still taking it too.
    napraxen.. anti infalmatory.. replaced with vimovo, it helps with inflammation and coating the stomach.
    amrix. since the start. good for muscle relaxers..
    elavil (amitryptiline) for topical pain and aid in sleeping helped a little with skin sensitivity... taken off to try trazadone.. mainly to help me sleep..( ha) it worked the first week now. i cant even tell im on it.
    Nucynta.. rough med ..makes me a littl queazy in the stomach.. some times it helps with the pain,, but results are not consistent.
    omeprizol. well thats a booster for the stomach
    ketamine cream.. nope won't do that any more there is an agent they use to make it stick to your skin and that hurts like hades.
    all in all nothing has really worked well enough for me to say I recommend it.

    they are thinking about a pharmacutical overhaul on me though so Ill see

     
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    Old 08-07-2013, 02:22 PM   #23
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    Re: Rsd/crps

    Quote:
    Originally Posted by painman2009 View Post
    hey snowman. I have rsd in both legs now in fact everywhere below the belt, in both arms parts of my back now and head. It all started in one leg.
    first they put me on neurontin(gabapentin) boy that one sucked. i was a walking zombie, I couldnt hold conversations at all as I couldnt remeber how to talk, My memory sucked my family said I would go to a movie and not remember it. so I had to watch all the movies again when i stopped taking it
    Oxycodone.. still taking it, and if my mind is in the right place it helps take the edge off bringing me down from 10 to a 9.

    lyrica.. nope I dont believe it is doing anythng for me
    still taking it too.
    napraxen.. anti infalmatory.. replaced with vimovo, it helps with inflammation and coating the stomach.
    amrix. since the start. good for muscle relaxers..
    elavil (amitryptiline) for topical pain and aid in sleeping helped a little with skin sensitivity... taken off to try trazadone.. mainly to help me sleep..( ha) it worked the first week now. i cant even tell im on it.
    Nucynta.. rough med ..makes me a littl queazy in the stomach.. some times it helps with the pain,, but results are not consistent.
    omeprizol. well thats a booster for the stomach
    ketamine cream.. nope won't do that any more there is an agent they use to make it stick to your skin and that hurts like hades.
    all in all nothing has really worked well enough for me to say I recommend it.

    they are thinking about a pharmacutical overhaul on me though so Ill see
    I'm pretty much down to OxyContin 20 mg and oxycodone 10 mg a day for the pain otherwise nothing else I've stopped everything it just doesn't help and even the 2 pain meds I take through out the day only take the edge off but don't remove the constant pain , I'm going to have the spinal cord stimulater put in , if I can get half relief ill be happy this has taken so much from me

     
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    Old 08-07-2013, 07:45 PM   #24
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    Re: Rsd/crps

    I definitely agree with you Snowman in that having people to talk to is really beneficial.

    I must say,reading these posts (and others online) scares me quite a bit as to what I'm in for. It's only in the last 2 weeks that I've actually started to come to grips that this could be a life long problem.

    The amount of meds that I'm on & what I read here that you guys are on is quite scary!

    Has anyone changed their diet to help manage pain? What type of physio work are people doing?

     
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    Old 08-08-2013, 02:19 AM   #25
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    Re: Rsd/crps

    Quote:
    Originally Posted by kimbokimbo View Post
    I definitely agree with you Snowman in that having people to talk to is really beneficial.

    I must say,reading these posts (and others online) scares me quite a bit as to what I'm in for. It's only in the last 2 weeks that I've actually started to come to grips that this could be a life long problem.

    The amount of meds that I'm on & what I read here that you guys are on is quite scary!

    Has anyone changed their diet to help manage pain? What type of physio work are people doing?
    I'm so sorry that you have this but I do as well and it's destroyed my life I have it in both feet so it travels through my body now I'm sick all the time and waiting for the SCS to be put in I've cut back on most meds for they don't work and I do biofeedback every two weeks and eat as good as I can for you are what you eat lol!!!! Just a little humor the best thing is to laugh and take it easy for RSD loves to feed on negative energy keep talking snowman2

     
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    Old 08-08-2013, 03:40 AM   #26
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    Re: Rsd/crps

    Quote:
    Originally Posted by snowman2 View Post
    I'm so sorry that you have this but I do as well and it's destroyed my life I have it in both feet so it travels through my body now I'm sick all the time and waiting for the SCS to be put in I've cut back on most meds for they don't work and I do biofeedback every two weeks and eat as good as I can for you are what you eat lol!!!! Just a little humor the best thing is to laugh and take it easy for RSD loves to feed on negative energy keep talking snowman2
    The best thing for me has been this health board so I don't feel so alone , it's nice to be able to talk to people who are dealing with the same illness , keep reaching out and don't give up your not alone and sorry if I sounded negative last message I was in a lot of pain and woke up 4:00 my time here in the United States I'm from Minnesota so I don't know where we fall on the time zone but keep up the fight snowman2

     
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    Old 08-10-2013, 01:41 AM   #27
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    Re: Rsd/crps

    Quote:
    Originally Posted by snowman2 View Post
    The best thing for me has been this health board so I don't feel so alone , it's nice to be able to talk to people who are dealing with the same illness , keep reaching out and don't give up your not alone and sorry if I sounded negative last message I was in a lot of pain and woke up 4:00 my time here in the United States I'm from Minnesota so I don't know where we fall on the time zone but keep up the fight snowman2
    It is a great place to vent, learne and make friends that understand your pain with out any expaination. this is where I went to when I first started dealing with this beast And though lately I dont frequent here it is still the first place I think of when I have something to talk about that my family wont understand. you are all great.. I keep you all in my thoughts and wishes.. please feel better.

     
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