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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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    Old 01-12-2010, 09:07 PM   #16
    cardshark
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    Re: pain

    Quote:
    Originally Posted by alwaysinpain1 View Post
    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.
    Hang in there and know you are definately not alone! I completely understand what you are going through. I am having a really bad week. My pain has sky rocketed and there have been moments I have seriously wanted to give up. In addition to the flare up I lost a family member last week and have an aunt I went and saw tonight and they admitted they don't think she will last a week tops. I have a doc's appt. Wed. and then Fri. I am finally getting a Ketamine infusion so right now I am focussing on the short term goal of making it to Fri. and hoping it at least brings some relief to the physical pain.

    We just have to stick together and we can all win the war against this horrible disease!
    Hang in there and try to stay warm!
    cardshark
    P.S. I also use a heating pad and/or electric blanket 24/7 which helps the spasms and pain more than anything else I've tried so far.

     
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    Old 01-13-2010, 01:44 PM   #17
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    Re: pain

    Cardshark,

    I am so sorry that you have had a bad week. My heart goes out to you and your family for your loss. If you need to talk to someone I am here for you.
    I hope that your doc. appointment goes well on friday. I will be keeping my fingers crossed for you to get the well needed pain relief and everything goes smoothly.
    I will keep your aunt in my thoughts and prayers. Like I said if you need anything please let me know,it doesn't matter if it has to do with rsd or not. Keeping our moods and emotions up truly helps when dealing with this disease,especially when you have other emotional things going on in your life and with your family.
    Take care and stay warm,
    Deanne

     
    Old 01-14-2010, 05:28 AM   #18
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    Re: pain

    always in pain
    I'm so sorry you're in such agony. All the symptoms you described are the same ones all of us with this horrible disease have or have had. Please believe me when I say " You are not alone" . All of us - "your sisters and brothers in pain" are here for you. We will listen, give advice( when asked for), chat, pray for you, and, just be there. What you have described brings back familiar memories of my own struggle. It's so hard to even function when the pain is that bad. I tried neurontin and thought I was going crazy. It had me pretty messed up for a bit. I'm not sure what your docs have done or are doing for you. Have they brought up the subject of an implanted infusion pump? If they haven't , ask about one. You know your pain and what works or doesn't help.That is what worked for me. I take some oral meds for breakthrough pain and a muscle relaxant, but that's all I take. Please let me know how things are going and know you are in my thoughts and prayers.
    upmawmaw

     
    Old 01-14-2010, 10:28 AM   #19
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    Re: pain

    When to doc appt today i was crying in my car after i left. this shocking is so bad dr sain only to meds work for nerve pain lyrica i tried didnt work for me now on nerontin worked for a while but now not working dr said these are the only to meds that helps nerve pain. Does anyone have a suggestions. please im desprite.

     
    Old 01-14-2010, 01:07 PM   #20
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    Re: pain

    I take Topamax - it's in the same family of drugs as Lyrica and Neurontin. They all are used for seizure control for epileptics, but also seem to work for nerve pain. But I also take a lot of other meds - Cymbalta, Skelaxin (at bedtime), blood pressure meds, Ambien CR to sleep, and Fentanyl patches and Hydrocodone which are very strong pain relievers. In addition, I have patches and creams to apply to my painful areas that also help.

    If your doctor doesn't want to treat your pain, you may need to find another. My personal care physician writes most of my scripts.

    The best of luck to you.

     
    Old 01-14-2010, 02:13 PM   #21
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    Re: pain

    Quote:
    Originally Posted by alwaysinpain1 View Post
    When to doc appt today i was crying in my car after i left. this shocking is so bad dr sain only to meds work for nerve pain lyrica i tried didnt work for me now on nerontin worked for a while but now not working dr said these are the only to meds that helps nerve pain. Does anyone have a suggestions. please im desprite.
    To say that neurontin and lyrica are the only two pain meds that work for nerve pain is crazy and I strongly recommend a different pain mgt. doc. There are a number of other AED's (Anti-epileptic Drugs) that they use to try to control pain and Topamax and Lamictal are a couple examples. There are also some anti-depressants that they use for nerve pain although I'm not as familiar with them. Have you tried Lidocaine patches? Those seem to help for some people. The TENS unit helped my pain for a little bit.

    Thank you to all of you for your thoughts and prayers. Hopefully the Ketamine infusion will bring a little light to the dark week I've had. I'll be sure to let everyone know as soon as possible how things go and how well it works.
    Everyone hang in there!
    cardshark

     
    Old 01-14-2010, 06:29 PM   #22
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    Re: pain

    Good luck with the ketamine, Cardshark - you go tomorrow, right? Hope it goes well and you get the pain relief you are expecting. Fill us in on the details when you are able.

    Sandy



    Quote:
    Originally Posted by cardshark View Post
    To say that neurontin and lyrica are the only two pain meds that work for nerve pain is crazy and I strongly recommend a different pain mgt. doc. There are a number of other AED's (Anti-epileptic Drugs) that they use to try to control pain and Topamax and Lamictal are a couple examples. There are also some anti-depressants that they use for nerve pain although I'm not as familiar with them. Have you tried Lidocaine patches? Those seem to help for some people. The TENS unit helped my pain for a little bit.

    Thank you to all of you for your thoughts and prayers. Hopefully the Ketamine infusion will bring a little light to the dark week I've had. I'll be sure to let everyone know as soon as possible how things go and how well it works.
    Everyone hang in there!
    cardshark

     
    Old 01-16-2010, 04:32 PM   #23
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    Re: pain

    I have surgery on wed. on wrist then stimulater for pain I heard it helps some people i hope and pray it helps me. U are all great support i dont think i would be here still without all your advice thank u all

     
    Old 01-16-2010, 04:34 PM   #24
    alwaysinpain1
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    Re: pain

    Quote:
    Originally Posted by Sandy325 View Post
    Good luck with the ketamine, Cardshark - you go tomorrow, right? Hope it goes well and you get the pain relief you are expecting. Fill us in on the details when you are able.

    Sandy
    I dont know what a ketamine infusion is but good luck i hope it helps i will pray for u.

     
    Old 01-16-2010, 11:51 PM   #25
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    Re: pain

    Alwaysinpain
    I hope that your surgery goes well. My thoughts will be with you and I hope you have a fast recovery and everything goes smoothly. Are you having an SCS put in? I have heard that it can be very beneficial in pain relief and even mobility in some people.
    I personally have a friend that has been battling rsd for quite some time now and the SCS has helped her in regaining some of her ability to get around and have less pain doing so.
    I truly hope that is the case for you.
    I'm glad that you are happy being on these boards. So am I. I don't know what I would do if it wasn't for all the support and advice that is given here. I'm glad that you feel the same. It is so nice and comforting to know you can go some place where people really know how you feel and sometimes on the deepest levels.
    Good luck!
    Take care and stay warm,
    Deanne

     
    Old 01-16-2010, 11:55 PM   #26
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    Re: pain

    Cardshark,

    I hope everything goes well with the ketamine infusion.I truly truly hope that it helps you and that you are able to get some pain relief. Its so nice to not be in horrible pain. We don't get that very often and I hope that you do! Please let us all know how things go.
    I've heard some things about ketamine and am leaning that way myself. I've tried most everything else and I've read the studies,it does sound very promising.
    You will be in my thoughts
    Take care and stay warm,
    Deanne

     
    Old 01-17-2010, 10:50 AM   #27
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    Re: pain

    I will be praying for you on Wednesday. Good luck with surgery and I will be praying that you finally get some pain relief. Just remember, we're here for you when you need us! Talk to you when you're able to post your results.
    Upmawmaw

    Last edited by upmawmaw; 01-17-2010 at 10:50 AM.

     
    Old 01-18-2010, 08:49 AM   #28
    alwaysinpain1
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    Unhappy Re: pain

    For those who asked. Wed is reconstrution wrist surgery they are putting a hole in my back for pain a nurse will b coming to my house every three days for pain meds in spine. After recovery I will get ready to have scs put in. Yes I hope all of this helps if I'm strong its not easy at all but u all help me exspecially with depression because I now know their are people suffering everyday with severe pain like me. Thanks to all of u. Sometimes I just wish I had a friend to talk to anytime (phone call or text) but at least I have this when I can get on a computer. So thanks again will chat when feeling better.

     
    Old 01-18-2010, 12:51 PM   #29
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    Re: pain

    alwaysinpain, just wanted to wish you good luck on your wrist surgery Wed. and with the SCS. I looked into that at one point and found out that it could actually make the RSD worse and pain mgt. doc I'm seeing now said there is no way he would recommend it for me although it is partially due to being son young. I hope it works well for you. Know that you are in my thoughts and prayers!

    Also wanted to let everyone know that Fri. got off to a rough start but turned out ok. The way I felt during the ketamine infusion reminded me a lot of recovery and post op from surgeries. When I left the clinic the pain was down to an 8/9 on scale 1-10 but the extreme sensitivity to things wasn't near as bad. For example, the vibration of the car ride home didn't send my pain through the rough, I can rest my hand on my leg and the pain doesn't sky rocket, etc. That night I actually slept 9 hours uninterrupted. I didn't wake up everytime one leg touched the other. Sat the constant pain was about a 7 instead of 10. Yesterday I noteiced it creeping back up and it isn't quite a 10 yet but it is definately a 9 and the sensitivity isn't to where it had been prior but it is also coming back as well. From the info. I found that is expected and I have actually responded well for just having had 1 treatment. The more you have close together the more likely it is to hold for longer periods. The hope is it will help more and for longer and longer with each treatment. I'm supposed to be having it once a week but when I left they couldn't get me back on the schedule until Feb. 10th but they said people cancel these and reschedule appt. a lot and I would just need to call in and see if there had been a cancellation and they still seemed to think I would be able to get back in in a week so we'll see.

    Thank you to everyone for all your thoughts, prayers, and support! I couldn't be getting through this without you!
    Love
    cardshark

     
    Old 02-16-2011, 08:46 AM   #30
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    Re: pain

    When it hurts so bad that you can't even be distracted by a book, a show, anything- all you can do is take deep breaths in and out and if it helps even a little you can start to creep back to a manageable pain level (ie. still can move but somehow detaching the mental from the physical)...I practice making a relaxed, stoic face, and somehow it works just enough to bring me back.

     
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