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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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    Old 11-30-2009, 12:42 PM   #1
    alwaysinpain1
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    Unhappy pain

    What do u do when the pain gets so bad and u want to cut it off?

     
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    Old 12-01-2009, 09:23 PM   #2
    cardshark
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    Re: pain

    You remind yourself that cutting it off believe it or not could actually make the pain even worse. I also try to do things to get my mind off the pain and distract myself. For example, I play a game on the computer, watch a movie, pet my dog, call a friend on the phone, etc.

    Hang in there!!
    cardshark

     
    Old 12-29-2009, 05:30 PM   #3
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    Post Re: pain

    Alwaysinpain1,
    Been there. It's not easy to put up with pain you really can't describe to someone who hasn't been through it. Is there any thing that gives you some relief? I'm not sure what all you've tried, if you need some ideas I'm sure we can give you some. It's hard, but don't give up.I begged my Dr. to cut my leg off because the pain was unbearable. He said it would cause even more pain and trouble. I still have all my limbs after over 17 years of struggling with rsd. It's a daily battle, but at least I'm in the fight.Keep me posted ,please. You're in my prayers.

     
    Old 12-30-2009, 01:16 PM   #4
    harmony85
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    Re: pain

    Alwaysinpain,

    I know completely how you feel. This disease can be so hard and so frustrating. There has been so many times when my body is flared up that I just want to cut off my leg or worse. It would not help,only make it worse. There are somethings that I have found that help me when meds don't do anything. Have you tried heat? I use heat all the time. My surgeon told me that heat would become my friend and man was he right. I use a heating pad 24/7 and I use an electric blanket at night. It seems that the heat helps so much to lessen the pain and even the muscle spasms. I'm not sure what other advice I could give you. Feel free to ask any questions and feel free to vent. We all know how bad this disease can be and how much it can bring you down. I hope I've been some help. You are with friends that truly understand what you are going through. All the bad thoughts and frustrations that come with this disease. It's so hard to see your self become someone else that you don't want to be. We all can live good and happy lives if we just try and look at the bright side. Take care and stay warm,
    Deanne

     
    Old 12-31-2009, 09:29 AM   #5
    alwaysinpain1
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    Unhappy Re: pain

    Quote:
    Originally Posted by harmony85 View Post
    Alwaysinpain,

    I know completely how you feel. This disease can be so hard and so frustrating. There has been so many times when my body is flared up that I just want to cut off my leg or worse. It would not help,only make it worse. There are somethings that I have found that help me when meds don't do anything. Have you tried heat? I use heat all the time. My surgeon told me that heat would become my friend and man was he right. I use a heating pad 24/7 and I use an electric blanket at night. It seems that the heat helps so much to lessen the pain and even the muscle spasms. I'm not sure what other advice I could give you. Feel free to ask any questions and feel free to vent. We all know how bad this disease can be and how much it can bring you down. I hope I've been some help. You are with friends that truly understand what you are going through. All the bad thoughts and frustrations that come with this disease. It's so hard to see your self become someone else that you don't want to be. We all can live good and happy lives if we just try and look at the bright side. Take care and stay warm,
    Deanne

     
    Old 12-31-2009, 09:35 AM   #6
    alwaysinpain1
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    Re: pain

    Im having a bad day today. sometimes u just need someone to talk to sometimes everyday. I can tell your very caring soam i If u want we can chat everyday or text me on my cell phone we can get them off our e-mails I hope I have u to talk to Please let my know new friend. How long have u had rsd? if u dont mind where do u live? We need to become friends because we cant do it alone write back soon new friend1

     
    Old 12-31-2009, 09:40 AM   #7
    alwaysinpain1
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    Re: pain

    sorry u must b a very strong person I admit I want last 17 years Your great1

     
    Old 12-31-2009, 11:12 AM   #8
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    Re: pain

    Although I have not been diagnosed for long, pain is no stranger to me. I have had 5 back surgeries. Have you tried the following:

    *lidocaine patches - prescribed by your doc
    *lidocaine ointment - prescribed by you doc
    *tens unit - can tolerate it sometimes
    *biofreeze - ointment that alot of chiropractors use - buy online
    *hot tub/spa
    *support stockings
    *salonpas - buy over the counter - square stick on patches
    *caspician cream - buy over the counter - tolerate sometimes

    These things have helped some but really I am beginning to think there is not much out there that will help with this pain.

    Hope you feel better.

     
    Old 01-10-2010, 11:00 AM   #9
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    Re: pain

    alwaysinpain,

    How are you feeling? Sorry I have not posted back. I've been on christmas vacation and am just now starting to reply to all the different posts. I saw one of your last posts where you said that we can't do this alone. You are completely right. We are all in this battle together and have to fight everyday to keep the pain from effecting us mentally and emotionally. It's so hard sometimes.
    I hope that you are having a better day,and are coping with your rsd.
    Any new changes with you when it comes to your pain relief?
    Also in one of your last posts I'm not sure if you were talking to me or someone else but you asking where do you live. I live in the pacific northwest in washington state. It gets very cold here and luckily we havn't had to much snow this year,but I rather have it a little warmer and snow than no snow and really cold weather.
    I hope you are doing ok. Take care and stay warm,
    Deanne

     
    Old 01-11-2010, 11:42 AM   #10
    alwaysinpain1
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    Re: pain

    i dont know what im doing imall new at this i wish i could talk to someone on the phone sometimes

    Last edited by alwaysinpain1; 01-11-2010 at 11:45 AM. Reason: more info

     
    Old 01-11-2010, 11:54 AM   #11
    alwaysinpain1
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    Unhappy Re: pain

    harmony85 With your rsd have u ever had alot of like shocking feeling. It started in bad arm then spread to head and good arm and right leg all shake sometimes on their own it scares me so much. does any have this problem I dont know what to do . please help.

     
    Old 01-11-2010, 11:55 AM   #12
    alwaysinpain1
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    Re: pain

    Quote:
    Originally Posted by alwaysinpain1 View Post
    harmony85 With your rsd have u ever had alot of like shocking feeling. It started in bad arm then spread to head and good arm and right leg all shake sometimes on their own it scares me so much. does any have this problem I dont know what to do . please help.

     
    Old 01-11-2010, 01:02 PM   #13
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    Re: pain

    alwaysinpain,

    Yes I do have shocking like pain. Can take my breath away and be so strong that I can't even make a noise. Most of the time it's when I'm either in a flare up or have done something to make it hurt worse. I use my heating pad to help with any and all rsd pain. I need a good pair of crutches because it's easier to get around in my apartment then in my wheelchair,and the cain I use doesn't help when I have that horrible shocking pain.
    Is there anything that you have found to help with it? Does your doctor have you on any meds just for that really bad pain. I take baclofen when it gets that bad. I can help between that and my other meds.
    I hope I've been some help and I hope that you are able to get some sort of pain relief.
    Take care and stay warm,
    Deanne

     
    Old 01-12-2010, 08:12 AM   #14
    alwaysinpain1
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    Re: pain

    Does the shocking like feeling spread to other body parts? They had not tryed baclofen for this they have me on nerotin for it. At first it helped but now im at the max. I can"t find anything to help when its in my head im going crazy. Last nite was almost my last nite here because it would not stop. It even wakes me up at nite. I really dont know what to do nero dr wants to talk to primary dr today to find out what to do but nothing the drs do helps. I just want to dig a hole a bury myself. I feel so alone. Nothing will ever work I just suffer. I give up I want take it anymore.

     
    Old 01-12-2010, 12:16 PM   #15
    harmony85
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    Re: pain

    alwaysinpain,

    I know how bad it can be. I know how sometimes the pain is just so bad that nothing helps and you just want to give up. But you can't. You can't let this disease take over like that. You are not alone in this battle. We all have days and nights that bring us to such horrible places we don't think we will ever recover but you can't let the pain win.
    You need to stand up for your health,physically and emotionally. This disease can bring out the worse in all of us.
    If the meds that you are on aren't working and you can't increase your dose you need to make your doctors give you something to actually help. They are working for you,not the other way around. This is your life we're talking about.
    You have to stay on top of the docs and speak up when things just aren't working and let them know that you are not happy with your treatment and they need to do something about it. I know it's hard but you can beat this. You can give in to the battle but not the war.
    Please don't feel like you are alone,you aren't. Most everyone on these boards have had to go through this or something similar at some point in their treatments and pain management.
    You really need to just be straight with your doctor. If something isn't working and you are in that much pain they need to help. You need to tell them they HAVE to do something about it.
    In some states there is a lack of confidence law that you can use if you are unhappy with the way your doctors are treating you. You can even if on insurance pick another doctor to help you with your treatments/pain management. I'm not sure if your state does have this law,like I said some states do,some don't. The best way to check is to google it. If you need any other help please post on here. We are all in this battle together and are more than willing to help each other to fight this disease as best we can. Don't feel alone,you aren't.
    Take care and stay warm,
    Deanne

     
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