It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD and pain medications

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 07-04-2013, 03:46 AM   #1
    snowman2
    Senior Member
    (male)
     
    snowman2's Avatar
     
    Join Date: Mar 2013
    Posts: 135
    snowman2 HB Usersnowman2 HB User
    Smile RSD and pain medications

    Hello I have RSD and was diagnosed in 2011 with this monster I currently take OxyContin , oxycodone , diazepam, clonazapam, and nucynta and they all have a purpose but I've also tried every pain medication out there and also tried all antidepressant medications but the side affects have been so difficult that I have it narrowed down to the ones listed but even those give side affects , I'm starting to think that I would be better off without them . I still have huge flareups daily that last hours and its like no medication really helps , I soak my feet in warm water as I have RSD in both feet and I go do biofeedback twice a month with a therapist and also go to a counselor to talk about RSD twice a month as I know you have to combat this from many fronts . I'm currently getting ready for the SCS and hope this cuts the pain by at least 50 % but my question is this do you think you could live without the Opiets snowman2

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 07-04-2013, 02:36 PM   #2
    skooze48
    Junior Member
    (female)
     
    Join Date: Jun 2013
    Location: Maui
    Posts: 11
    skooze48 HB User
    Re: RSD and pain medications

    Hi Snowman!
    I have been diagnosed with RSD in 2003 after a work comp accident in 1999. I was bed ridden for 2 years during this time. I had neck surgery in 2003, and the RSD set in. I take ms cotin, oxycdone, neurontin, soma, & diazapem. I can't live with out the MS cotin the long term drug. If I miss a dose I curl up in 2 hours. I now see a pain management doctor, who has fine tuned my meds. I cut back when I can, but the next day I usually pay for it. Yesterday I had my 7th nerve block an epidural in my lower back. I wanted want in my shoulder too as my RSD is contained in the upper left extremity. The doctor said I could have my choice of one per visit, and I wanted to walk again. I can't believe the difference. I can walk now without my cane. You are only allowed 3 a year. Have you had any of these? The earlier nerve blocks done in 2003 didn't do a thing for me, however I wasn't on the level of the opiates that we are on now. But the ones in 2011 and now have made a night and day difference. My left shoulder even has more movement after this last shot.
    The key to managing the RSD is finding what works for you, so you can have some quality of life. I live with my heating pad. My biggest complaint is the waking up every 2 to 3 hours at night because I find it hard to stay in one position for too long. I also use a STS machine that I tried out at a PT clinic. That turned my life around and got me out of bed. I now own a home unit. I hope this helps.

     
    Reply With Quote
    The following user gives a hug of support to skooze48:
    snowman2 (07-05-2013)
    The Following User Says Thank You to skooze48 For This Useful Post:
    snowman2 (07-05-2013)
    Old 07-05-2013, 07:53 AM   #3
    snowman2
    Senior Member
    (male)
     
    snowman2's Avatar
     
    Join Date: Mar 2013
    Posts: 135
    snowman2 HB Usersnowman2 HB User
    Re: RSD and pain medications

    Hi skooze48 everything helps even talking for I feel so isolated with this illness . I've been having these terrible flare ups daily and it's like no matter how prepared I am I still get them certain triggers set them off like noise , cold , walking witch we need to do , the pain gets so bad that I feel like I black out , I don't remember things and it takes hours for me to come back . I've done SGNBs for 2 years every 10 days alternating from rite to left because you can only do one side at a time but we've stopped them because they have become innafective and only last days . My pain doctors want to put the SCS in but they said I need to get of all opiets first I don't know how I'm going to be able to do this but I have to trust that they know what there doing . The pain meds help a lot but they are also going to stop working eventually and I'll need higher doses and with my age of 49 they said I'm not in a good place so I guess my question is do you or anyone out there think that if you had the spinal cord stimulator put in that you could go without pain meds ? Me personally I think I would still need some if it works and I know that pain meds are not good for us but we have no choice this is the hardest illness I feel to treat and I look back one year ago and I'm not better I'm worse

     
    Reply With Quote
    Old 07-05-2013, 08:02 AM   #4
    snowman2
    Senior Member
    (male)
     
    snowman2's Avatar
     
    Join Date: Mar 2013
    Posts: 135
    snowman2 HB Usersnowman2 HB User
    Re: RSD and pain medications

    Quote:
    Originally Posted by skooze48 View Post
    Hi Snowman!
    I have been diagnosed with RSD in 2003 after a work comp accident in 1999. I was bed ridden for 2 years during this time. I had neck surgery in 2003, and the RSD set in. I take ms cotin, oxycdone, neurontin, soma, & diazapem. I can't live with out the MS cotin the long term drug. If I miss a dose I curl up in 2 hours. I now see a pain management doctor, who has fine tuned my meds. I cut back when I can, but the next day I usually pay for it. Yesterday I had my 7th nerve block an epidural in my lower back. I wanted want in my shoulder too as my RSD is contained in the upper left extremity. The doctor said I could have my choice of one per visit, and I wanted to walk again. I can't believe the difference. I can walk now without my cane. You are only allowed 3 a year. Have you had any of these? The earlier nerve blocks done in 2003 didn't do a thing for me, however I wasn't on the level of the opiates that we are on now. But the ones in 2011 and now have made a night and day difference. My left shoulder even has more movement after this last shot.
    The key to managing the RSD is finding what works for you, so you can have some quality of life. I live with my heating pad. My biggest complaint is the waking up every 2 to 3 hours at night because I find it hard to stay in one position for too long. I also use a STS machine that I tried out at a PT clinic. That turned my life around and got me out of bed. I now own a home unit. I hope this helps.
    Hi skooze48 I wrote a message about my thread to you but it went to the thread so if you get this look for what I said

     
    Reply With Quote
    Old 07-08-2013, 05:26 PM   #5
    skooze48
    Junior Member
    (female)
     
    Join Date: Jun 2013
    Location: Maui
    Posts: 11
    skooze48 HB User
    Re: RSD and pain medications

    Quote:
    Originally Posted by snowman2 View Post
    Hi skooze48 everything helps even talking for I feel so isolated with this illness . I've been having these terrible flare ups daily and it's like no matter how prepared I am I still get them certain triggers set them off like noise , cold , walking witch we need to do , the pain gets so bad that I feel like I black out , I don't remember things and it takes hours for me to come back . I've done SGNBs for 2 years every 10 days alternating from rite to left because you can only do one side at a time but we've stopped them because they have become innafective and only last days . My pain doctors want to put the SCS in but they said I need to get of all opiets first I don't know how I'm going to be able to do this but I have to trust that they know what there doing . The pain meds help a lot but they are also going to stop working eventually and I'll need higher doses and with my age of 49 they said I'm not in a good place so I guess my question is do you or anyone out there think that if you had the spinal cord stimulator put in that you could go without pain meds ? Me personally I think I would still need some if it works and I know that pain meds are not good for us but we have no choice this is the hardest illness I feel to treat and I look back one year ago and I'm not better I'm worse
    Wow I am so sorry that your flare ups are this severe. It brings me back to when I was bed ridden for two years with so much pain. I guess what your main concern here is whether you can live with an SCS and no opiates? I once wanted to try the duragesic (fentanyl patches) during the winter, because in the summer I sweat too much. They took away all of my pain meds, and I was to wear the patch and change it out every 3 days. I was on the highest dose they made. I found that they didn't last for the full 3 days. I had some pain meds stashed, but they it seemed like day 3 was the worse. I was on them for 2 months, and went off of them. It was strange NOT taking meds. It seems like a habit now.
    I think if your doctors are talking about the SCS, I would seriously consider it. No one deserves to be in this much pain and have any quality of life. I hope that you have some one to help you, and you are not going thru this alone. I had my two kids who were 8 and 12 at the time. There are several threads here for info. I'm not sure, but I believe. that you are allowed some back up meds for if something goes wrong with the pump. I am the wrong person to ask about this. I pray that some other angel will come long and answer your questions. I'm just going from my memory of when I researched it 8 years ago.
    I agree about the part of our tolerance going up and us needing more. I have my blood work checked twice a year for my liver. None of my current meds have tylenol in them, but when you are on such high doses damage can be done. I also can't tolerate the cold at all, hence I am lucky to live in Maui. I however was in Denver this winter to help my mom with chemo, and I had to wear three layers on the bottom and the 3 on the top. Plus a down vest in the house. Outside was worse. I pray that you find something to help you and I pray for you. Big hugs to you. Hang in there and take care. Skooze

     
    Reply With Quote
    Old 08-28-2013, 03:53 AM   #6
    snowman2
    Senior Member
    (male)
     
    snowman2's Avatar
     
    Join Date: Mar 2013
    Posts: 135
    snowman2 HB Usersnowman2 HB User
    Re: RSD and pain medications

    Quote:
    Originally Posted by skooze48 View Post
    Wow I am so sorry that your flare ups are this severe. It brings me back to when I was bed ridden for two years with so much pain. I guess what your main concern here is whether you can live with an SCS and no opiates? I once wanted to try the duragesic (fentanyl patches) during the winter, because in the summer I sweat too much. They took away all of my pain meds, and I was to wear the patch and change it out every 3 days. I was on the highest dose they made. I found that they didn't last for the full 3 days. I had some pain meds stashed, but they it seemed like day 3 was the worse. I was on them for 2 months, and went off of them. It was strange NOT taking meds. It seems like a habit now.
    I think if your doctors are talking about the SCS, I would seriously consider it. No one deserves to be in this much pain and have any quality of life. I hope that you have some one to help you, and you are not going thru this alone. I had my two kids who were 8 and 12 at the time. There are several threads here for info. I'm not sure, but I believe. that you are allowed some back up meds for if something goes wrong with the pump. I am the wrong person to ask about this. I pray that some other angel will come long and answer your questions. I'm just going from my memory of when I researched it 8 years ago.
    I agree about the part of our tolerance going up and us needing more. I have my blood work checked twice a year for my liver. None of my current meds have tylenol in them, but when you are on such high doses damage can be done. I also can't tolerate the cold at all, hence I am lucky to live in Maui. I however was in Denver this winter to help my mom with chemo, and I had to wear three layers on the bottom and the 3 on the top. Plus a down vest in the house. Outside was worse. I pray that you find something to help you and I pray for you. Big hugs to you. Hang in there and take care. Skooze
    Skooze thank you for the feedback I know it's been awhile but this site is the best thing that I have going it really helps to be able to talk to you and other members I'm going ahead with the SCS so preparing for this mentally and with my wife and kids , I have 3 children that age from 22 , 24, and 28 and we are all working on a plan I need my kids help my wife is getting worn down for her mom has lung cancer so lots of doctors and my mom has Alzheimer's and on her way out and the sad thing is my dad and sisters don't care that I'm sick there angry that I'm not there helping all the time so they won't talk to me so I have no family except my wife and kids and even friends that I thought where friends have fallen by the wayside my counselor says people don't know how to act around me anyway I thought I would send a message I hope you get it and we can talk snowman2

     
    Reply With Quote
    The following user gives a hug of support to snowman2:
    kimbokimbo (10-15-2013)
    Old 10-14-2013, 07:12 PM   #7
    honeynbunz70
    Newbie
    (female)
     
    honeynbunz70's Avatar
     
    Join Date: Oct 2013
    Location: California USA
    Posts: 4
    honeynbunz70 HB User
    Re: RSD and pain medications

    Hi snowmen2, I was diagnosed with RSD back in March of 2000. I had to go to 12 different specialist to find out what exactly this crazy mystery pain was coming from. I injured what I myself thought was my elbow and then realized I was losing all mobility in my right arm. It was hot and then cold. Swollen, dry and just useless...my arm was no longer functioning. I had just given birth to my third daughter and was a lumber grader in a local mill. The doctors had tried to do the Stellate Ganglion shots but right before my third and final series of shots my dad and I were hit by snow plow, which left me ineligible for me to complete my series. It's a one shot deal. So from there they put me on everything under the sun. I took so many medications that I swear it caused me to have a nervous break down. I was just a shell of the strong woman I was before. To be one of 4 women working in a mill that had 250 male employees to a broke down rattle case was too much to take. I guess what my point is, is please do not give in to the depression and the medication trap of this disorder! There is hope. I am down to taking at the most 4 Norco's a day as apposed to 8-10 Oxy a day. No antidepressants. No muscle relaxers...even though I have a million secondary problems. I chose to hold out as long as I can until I truly need the pain meds. It was nice to come out of the medication fog. There is no cure for what we have, but there is always hope. Don't let the RSD define who you are.

     
    Reply With Quote
    Old 10-16-2013, 05:50 AM   #8
    snowman2
    Senior Member
    (male)
     
    snowman2's Avatar
     
    Join Date: Mar 2013
    Posts: 135
    snowman2 HB Usersnowman2 HB User
    Re: RSD and pain medications

    Quote:
    Originally Posted by honeynbunz70 View Post
    Hi snowmen2, I was diagnosed with RSD back in March of 2000. I had to go to 12 different specialist to find out what exactly this crazy mystery pain was coming from. I injured what I myself thought was my elbow and then realized I was losing all mobility in my right arm. It was hot and then cold. Swollen, dry and just useless...my arm was no longer functioning. I had just given birth to my third daughter and was a lumber grader in a local mill. The doctors had tried to do the Stellate Ganglion shots but right before my third and final series of shots my dad and I were hit by snow plow, which left me ineligible for me to complete my series. It's a one shot deal. So from there they put me on everything under the sun. I took so many medications that I swear it caused me to have a nervous break down. I was just a shell of the strong woman I was before. To be one of 4 women working in a mill that had 250 male employees to a broke down rattle case was too much to take. I guess what my point is, is please do not give in to the depression and the medication trap of this disorder! There is hope. I am down to taking at the most 4 Norco's a day as apposed to 8-10 Oxy a day. No antidepressants. No muscle relaxers...even though I have a million secondary problems. I chose to hold out as long as I can until I truly need the pain meds. It was nice to come out of the medication fog. There is no cure for what we have, but there is always hope. Don't let the RSD define who you are.
    Hi there and thank you for telling your story since I've posted this I'm also down to the bare minimum of meds and what I can handle I was taking 9 meds before I crashed and ended up in the hospital . I have RSD in both feet now and it travels through my body so I'm ill a lot but going to have the SCS done before the holidays and down to taking 3 OxyContin 20 mg and 3 oxycodone 10/325 a day and feeling somewhat better I've been on everything but nothing really helps just takes the edge off I'm hoping that ill get some relief from the SCS . I was a contractor for 28 years and now I can only do things for a couple hours on days that I feel good , I'm married and have 3 adult children there all 20 something's is what I call them and help as much as they can my wife and I have gone through so much but our doing better with this monster keep in touch it helps to have someone to talk to snowman2

     
    Reply With Quote
    Reply Reply

    Tags
    addiction, pain, rsd and meds, rsd in feet, side affects



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 10:13 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!