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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 03-31-2013, 04:32 AM   #1
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Smile Rsd/crps

I wanted to get feedback on what everyone is doing to treat RSD/CRPS . What is working for you please share snowman2

 
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Old 04-01-2013, 11:49 PM   #2
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Re: Rsd/crps

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I wanted to get feedback on what everyone is doing to treat RSD/CRPS . What is working for you please share snowman2
Hey snowman..
every one is going to give you a different story . from minor differences to complete opposites. RSD/CRPS as well as pain itself is very personal and like a living creature it seems to take on its own personality.
with me, I have found nothing spectacular in the treatment of my pain, they have tried all injections with a resounding fail at the end then they put me into the pharmaceutical therapy which is minor at best then they tried topicals. a couple of ketemine creams( it hurt me more because of the compound they use to keep meds on your skin. now they are trying to force SCS down my throat but I do not believe this is the answer for me.. too risky as I see it. as far as which med work best for me I say amrix.. this is my muscle relaxer and this helps calm my back pain plus calms my muscle spasms which are getting worse. ..
I hope this helps a little . keep reading and asking qiestions though as the more you know the better you ail be.. good luck

 
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Old 04-05-2013, 05:50 PM   #3
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Re: Rsd/crps

Painman, I am so glad you said something about back pain. So I take it you get bad back pain and back spasms? Since I did my last nerve block and have been out of work since...they keep telling me that the severe back pain and back spasms is because of my gait being abnormal since my injury and that I probably have some degeneration which I probably had before my injury. Seriously!!!! I think she is trying to cover her butt myself since I didn't have this problem before I did the block!!! So when did you start having the pain in your back or was it always there? Is that the full name of the medication you take for back spasms? They have given me Robaxin but it isn't helping me...at all!!!!!
Snowman, Painman is absolutely right. People will give you many different opinions about what works for them. We are all different!!! Don't be discouraged if a medication that one person says was the best doesn't work for you! Hang in there and keep talking, asking questions, and doing your own research!!!!

 
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Old 04-05-2013, 08:24 PM   #4
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Re: Rsd/crps

I want to say thank you I know we are all different but it's like I'm running out of options so I want to here from as many Peaple as possible as to what there doing I didn't want to do the SCS but know that the RSD is in both feet and I have flareups every day that last for 3 hours or so I want to go ahead with the trial I figure what do I have to lose if it doesn't work then ill take it out I also have degenerative disks in my back but I don't think the SCS will help that ill have to continue my OxyContin 20 mg 3 times a day but maybe ill be able to go out and enjoy life again and not be on so many pain meds has any one tried nucynta that's what I take for the RSD pain 75 mg

 
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Old 04-05-2013, 09:35 PM   #5
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Re: Rsd/crps

I originally was on Nucynta but it didn't do anything for me. Pretty much, any pain meds they have given me has only taken the edge off of it. My TENS unit has been my life saver! I'm looking into getting an H-Wave machine but the nurse case manager is trying to get something else because "she" doesn't think work comp will pay for it because it is to expensive so she is looking into another device instead. When she showed what it was at the doctors appointment I had, it looked just like my TENS unit. She's trying to tell me it's much better than it. Oh please!!! With the H-Wave, I have eight electrodes going from my lower back to the bottom of my foot! It helps me TREMENDOUSLY!!!! I know I snapped on her at my appointment but between her and the quack that SHE recommended my PM doctor to send me to for a second opinion just really made me upset!!! Maybe before taking that huge of a step, look into that. If you get the back spasms and are dealing with it in both feet, it cant hurt to check into it! Does it hurt you to wear shoes? I think I would be in less pain if I could walk around barefoot!!! As soon as I put my shoes on to leave, I am in pain!!!

 
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Old 04-05-2013, 09:42 PM   #6
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Re: Rsd/crps

Yes it hurts to where shoes so I where swade slippers with a soft lining and ill ask about this device you mentioned

 
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Old 04-05-2013, 10:14 PM   #7
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Re: Rsd/crps

Because of my ankle injury, they made orthotics for me. To me, that has just made my feet hurt worse! Plus, the doctor wants me to wear tennis shoes only...and it has to be the New Balance shoes that they want me to wear. I have my flats that I wear for church. I sing with our worship team and as soon as we take our seats, my shoes come off!!!

 
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Old 04-06-2013, 04:39 AM   #8
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Re: Rsd/crps

I talked to my doctor about this because I really liked what Peaple where saying and I figured why not and I also found a place to go but they needed a referral so next time I was with my doctor I brought info on it for him to read and he shot it down and said it could cause harm to my blood so I have been at a loss as to what to do but I know they are using this kind of treatment to cure many different illness

 
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Old 04-09-2013, 03:15 PM   #9
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Re: Rsd/crps

snowman: regarding treatment options.. aside from pills they offer aqua therapy, physical therapy, TDCS, HBOT, Ketemine infusion, chemo-therapy, tens units, there are others I do not know the name of, but the one thing thats remains true is to stay as active as you can, try to get ahead of atrophy, speak with your doctors, about these options and you can seek out answers here as well.
Jewel.. I had multiple herniations prior to this injury, but yes my poor gait is making matters worse as well as RSD spread.

 
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Old 04-09-2013, 08:20 PM   #10
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Re: Rsd/crps

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Originally Posted by painman2009 View Post
snowman: regarding treatment options.. aside from pills they offer aqua therapy, physical therapy, TDCS, HBOT, Ketemine infusion, chemo-therapy, tens units, there are others I do not know the name of, but the one thing thats remains true is to stay as active as you can, try to get ahead of atrophy, speak with your doctors, about these options and you can seek out answers here as well.
Jewel.. I had multiple herniations prior to this injury, but yes my poor gait is making matters worse as well as RSD spread.
For me Painman, I didn't have any back problems before my injury. I've walked with a limp from May until December. I probably walk a little better now with using my cane than I did before. They just think the back pain has nothing to do with the RSD. Their opinion is that it is just degeneration in the disc and nothing to do with RSD. My point is that I never had any problems with my back before the block. Snowman, when you go in for your blocks, do you ever have pain in your back from them or do they do the block somewhere else?

 
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Old 04-10-2013, 04:55 AM   #11
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Re: Rsd/crps

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For me Painman, I didn't have any back problems before my injury. I've walked with a limp from May until December. I probably walk a little better now with using my cane than I did before. They just think the back pain has nothing to do with the RSD. Their opinion is that it is just degeneration in the disc and nothing to do with RSD. My point is that I never had any problems with my back before the block. Snowman, when you go in for your blocks, do you ever have pain in your back from them or do they do the block somewhere else?
All I can say is I've dealt with back pain for over 10years and in the beginning I thought that this was the worst pain , I know the more I lay around the more it hurts so I push through the pain and it has always gone away , I take pain meds for my back so that helps . I don't feel that my back pain and RSD are connected in anyway there 2 separate monsters . It's weird how one pain med wont touch the back pain and one won't touch the RSD

 
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Old 04-10-2013, 08:46 AM   #12
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Re: Rsd/crps

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Originally Posted by snowman2 View Post
All I can say is I've dealt with back pain for over 10years and in the beginning I thought that this was the worst pain , I know the more I lay around the more it hurts so I push through the pain and it has always gone away , I take pain meds for my back so that helps . I don't feel that my back pain and RSD are connected in anyway there 2 separate monsters . It's weird how one pain med wont touch the back pain and one won't touch the RSD
The back pain and RSD, if your dealing with spread just might wind up being indecipherable from one another. My back pain was before RSD so I too know what it was like dealing with that,(I could always work through that) then this beast invaded my world.. What a huge difference in pain, and impact. snowman .. good luck

 
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Old 04-10-2013, 09:34 PM   #13
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Re: Rsd/crps

Hi there
I was diagnosed in 2010 after a workplace injury 2009.Multiple fractures to my right foot which didn`t show up on xray. 4 months later Nuclear scan diagnosed RSD/CRPS. It has been horrendous. I have had 4 children and would prefer childbirth pain to the burning spasmodical cramping pain of RSD.
I have taken Pain killers, Lyrica, Endep, had a spinal block which worked for a short time. I felt the Lyrica helped me to gain some control with the pain but made me feel almost dyslexic at times.
I have constantly excersised my both feet together and creep my toes backwards and forwards, I also flip my feet up and down in the water (Spa, bath, pool) I do this excersise multiple times a day especially when I feel my foot starting to cramp. Sometimes it gets too bad and i have to stop.Shoes are a huge problem as unless they are very light i cannot put them on. The best I have found for the Winter is wearing bed socks that are very soft and my knee lenghth sheepskin boots (UGG boots) The major problem I have is that my foot gives way under me with no warning causing me to fall over. I am almost 60 years old and I am really sad for all of you young people who have been diagnosed with this horror. I believe that excersise is the best you can do, keep moving as they say if you don`t use it you lose it and my foot is less stiff when i keep moving it. Water therapy helps a lot. Walking is more difficult at times as my lower back has been diagnosed with lumbago this worsened after my last fall.
Medicine is improving all the time and I hope one day RSD/CRPS will be able to be pain controlled.
Hang in there and please don`t let this destroy your life

 
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