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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD/crps flare ups

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    Old 04-21-2013, 07:24 AM   #16
    JohnathanM
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    Quote:
    Originally Posted by TheMerlion View Post
    I totally agree! I've been diagnosed with crps at age 19 (a year ago) and underwent all sorts of treatments since then. I'm been through meds, pt, acupuncture, massage from literally all over my country. No one is able to sort out my pain still. It's indeed an emotional roller coaster. Tens helps for like half an hour and pt just plainly kills me. My muscle is still not regaining any mass, my pain is off the charts at times and i still limp badly on bad days. Is there really anyone out there which has experience complete remission?
    I have not read of anyone going into complete remission. My drs state it can happen though. Good luck.

     
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    Old 04-28-2013, 05:22 PM   #17
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    So now with the ongoing saga that is my CRPS I have started having burning/stabbing episodes tat are worse since now in PT. so today for the first time my foot during this episode & leg twisted to the left very far (further than it should have) and I fought to get it back straight (normal way). It was really painful (severely) and unnerving. Anyone else had this happen? I'm concerned because I've read that some people's limbs may twist in one direction or another and stick that way. Help please .

     
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    Old 04-28-2013, 05:29 PM   #18
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    Re: RSD/crps flare ups

    Quote:
    Originally Posted by JohnathanM View Post
    So now with the ongoing saga that is my CRPS I have started having burning/stabbing episodes tat are worse since now in PT. so today for the first time my foot during this episode & leg twisted to the left very far (further than it should have) and I fought to get it back straight (normal way). It was really painful (severely) and unnerving. Anyone else had this happen? I'm concerned because I've read that some people's limbs may twist in one direction or another and stick that way. Help please .
    I have Hurd of toes and limbs being deformed from RSD but not like over night I certainly would talk to your doctor . What state do you live in I'm from Minnesota and its been wet , raining , snowing , all of this weather has me in so much pain I'm miserable it's never been this bad , maybe it was like an awful muscle spasm that can lock you up snowman2

     
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    Old 04-28-2013, 05:37 PM   #19
    JohnathanM
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    Quote:
    Originally Posted by snowman2 View Post
    I have Hurd of toes and limbs being deformed from RSD but not like over night I certainly would talk to your doctor . What state do you live in I'm from Minnesota and its been wet , raining , snowing , all of this weather has me in so much pain I'm miserable it's never been this bad , maybe it was like an awful muscle spasm that can lock you up snowman2
    That's what I'm thinking. It's been rainy & kinda cold last couple of days. In Kentucky here

     
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    Old 04-28-2013, 06:20 PM   #20
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    Re: RSD/crps flare ups

    Quote:
    Originally Posted by JohnathanM View Post
    That's what I'm thinking. It's been rainy & kinda cold last couple of days. In Kentucky here
    Hang in there I'm. Sorry this is a terrible illness , I want to say again that exercise will cause us pain but its not harming us

     
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    Old 04-30-2013, 10:46 PM   #21
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    Re: RSD/crps flare ups

    I can't believe this dr hess runs the clinic

     
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    Old 05-03-2013, 06:55 PM   #22
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    Re: RSD/crps flare ups

    How are you feeling? I'm surprised to see you on here right now. I know it's usually in the middle of the night if it's a bad night or early in the morning. Either way, hope you are feeling ok. Keep warm. :-D

     
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    Old 05-04-2013, 03:21 AM   #23
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    Re: RSD/crps flare ups

    Quote:
    Originally Posted by jewlz67 View Post
    How are you feeling? I'm surprised to see you on here right now. I know it's usually in the middle of the night if it's a bad night or early in the morning. Either way, hope you are feeling ok. Keep warm. :-D
    Ya I can mix it up LOL

     
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    Old 11-12-2013, 07:21 AM   #24
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    Re: RSD/crps flare ups

    This is meant as a reply to Merlion

    If you are in Singapore, try visiting Dr Boey Wah Keong at Gleneagles Hospital. He helped me. Unfortunately, I don't live in Singapore anymore and am working with a doctor here in Thailand that seems to not believe my CRPS is coming back. Having suffered it before, I think I know better than he does at this time.

    Last edited by jmccartyth; 11-12-2013 at 07:22 AM. Reason: as stated above.

     
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    Old 11-12-2013, 07:24 AM   #25
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    Re: RSD/crps flare ups

    Quote:
    Originally Posted by TheMerlion View Post
    I totally agree! I've been diagnosed with crps at age 19 (a year ago) and underwent all sorts of treatments since then. I'm been through meds, pt, acupuncture, massage from literally all over my country. No one is able to sort out my pain still. It's indeed an emotional roller coaster. Tens helps for like half an hour and pt just plainly kills me. My muscle is still not regaining any mass, my pain is off the charts at times and i still limp badly on bad days. Is there really anyone out there which has experience complete remission?
    Yes, I have, for almost 2 years.

    If you are in Singapore as your name suggests, try visiting Dr Boey Wah Keong at Gleneagles Hospital. He helped me. Unfortunately, I don't live in Singapore anymore and am working with a doctor here in Thailand that seems to not believe my CRPS is coming back. Having suffered it before, I think I know better than he does at this time.

     
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    Old 11-19-2013, 07:52 PM   #26
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    Re: RSD/crps flare ups

    Quote:
    Originally Posted by JohnathanM View Post
    I have not read of anyone going into complete remission. My drs state it can happen though. Good luck.
    A lady who sees the same doctor I see has been in remission for 6 years. She had a mild case, but she has not even turned here SCS on except every couple months to check the battery.

    Myself it feels hopeless. I spend many hours in tears! I would be happy for temporary remission long enough that I could sleep of a night.

     
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    Old 11-19-2013, 08:11 PM   #27
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    Re: RSD/crps flare ups

    Quote:
    Originally Posted by Bratette19 View Post
    A lady who sees the same doctor I see has been in remission for 6 years. She had a mild case, but she has not even turned here SCS on except every couple months to check the battery.

    Myself it feels hopeless. I spend many hours in tears! I would be happy for temporary remission long enough that I could sleep of a night.
    Have you had multiple nerve block or an extended nerve block treatment?

    For me it took 3 seperate lumbar nerve blocks over about a 3 month period to push it into remission. It went away first and second time for a few weeks, then gradually came back. The doctor was going to conduct an overnight, 24 hour nerve block treatment if it came back after the third treatment and was confident it could be overcome.

    It has not come back for 2 years since it first surfaced though recently it felt like it was threatening to come back and I had to take a physical break for a few days.

    Don't give up hope. The cause is a mystery but treatments are available and work for some of us, probably for you too I hope.

     
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    Old 11-19-2013, 09:17 PM   #28
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    Re: RSD/crps flare ups

    Quote:
    Originally Posted by jmccartyth View Post
    Have you had multiple nerve block or an extended nerve block treatment?

    For me it took 3 seperate lumbar nerve blocks over about a 3 month period to push it into remission. It went away first and second time for a few weeks, then gradually came back. The doctor was going to conduct an overnight, 24 hour nerve block treatment if it came back after the third treatment and was confident it could be overcome.

    It has not come back for 2 years since it first surfaced though recently it felt like it was threatening to come back and I had to take a physical break for a few days.

    Don't give up hope. The cause is a mystery but treatments are available and work for some of us, probably for you too I hope.
    Yes I have had 5 nerve blocks they stop my pain for a very short time. The doctor who put in my spinal cord stimulator talked about how I was the perfect candidate and he was 99% sure that with SCS I would go into remission, boy was he wrong. I just have new issues. Don't get me wrong I can tell a difference I went from like an 8 on pain scale to 6 but I am still unable to walk. Am still stuck in my recliner most of the time. If I am up on my feet. I am in major pain after 20 minutes,

     
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    Old 11-19-2013, 11:12 PM   #29
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    Re: RSD/crps flare ups

    Quote:
    Originally Posted by Bratette19 View Post
    Yes I have had 5 nerve blocks they stop my pain for a very short time. The doctor who put in my spinal cord stimulator talked about how I was the perfect candidate and he was 99% sure that with SCS I would go into remission, boy was he wrong. I just have new issues. Don't get me wrong I can tell a difference I went from like an 8 on pain scale to 6 but I am still unable to walk. Am still stuck in my recliner most of the time. If I am up on my feet. I am in major pain after 20 minutes,
    I know the feeling when attempting to stay on my feet, it was the same. Driving was a huge problem because mine effected my right foot for the first few months, but then it just switched after the 2nd nerve block to my left foot and left hand to some extent.

    My nerve blocks were chemical/anesthetic blocks. My doctor spoke of a continuous injection treatment for 24 hours or longer as a further more agressive treatment. Ask if your doctor has done this before? If not, anything that has worked for others is worth a try!

     
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    Old 11-20-2013, 04:16 AM   #30
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    Re: RSD/crps flare ups

    Barrette 19 how are you doing with the SCS ? I'm going to get one soon also how long did it take to recover? Snowman2

     
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