Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-19-2015, 09:27 PM #11
happygirlpa happygirlpa is offline
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Hi there! It sounds like you are stressed to the max! I moved a few months back and remember feeling very overwhelmed and frustrated because i couldnt do much by myself. Thank goodness i had family members to unpack. I still have lots to do but at least the house is tolerable (plz dont peek in my garage or basement haha) As for cymbalta, i've been on it 2 yrs now. I havent gained weight from it. It helps my anxiety and depression but not nerve pains. I stillget zingers down into my feet and searing pain in my legs when i lay down. I cant take lyrica, neurontin, gabapentin. I remember they caused weight gain, bloating, n yes, hair loss. So im on the do nothing path right now until ican afford to get into a pain mgt dr to see what's new. But just to let you know cymbalta helped my psyche but really not my rsd pains.
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Old 07-20-2015, 09:21 AM #12
Always_Believe Always_Believe is offline
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Hi there! It sounds like you are stressed to the max! I moved a few months back and remember feeling very overwhelmed and frustrated because i couldnt do much by myself. Thank goodness i had family members to unpack. I still have lots to do but at least the house is tolerable (plz dont peek in my garage or basement haha) As for cymbalta, i've been on it 2 yrs now. I havent gained weight from it. It helps my anxiety and depression but not nerve pains. I stillget zingers down into my feet and searing pain in my legs when i lay down. I cant take lyrica, neurontin, gabapentin. I remember they caused weight gain, bloating, n yes, hair loss. So im on the do nothing path right now until ican afford to get into a pain mgt dr to see what's new. But just to let you know cymbalta helped my psyche but really not my rsd pains.
Thank you! I am having a bit of trouble with PM. He 'knows CRPS' and says I don't have it because I can wear a sock. He says he "has seen CRPS and you don't have it" but he has never seen my leg, felt the temperature difference or assessed the edema. He said I need to do something to get my mind off the pain. Really? I won't do a pain diary because it makes me focus too much on the pain. And I was in a PM office...did he want me to talk about the weather?

I was taking so much ibuprofen that I now have GERD because that is the only thing I have for pain. I get that neurontin/lyrica et al is supposed to help but when it doesn't, what's next? Invasive procedures. I'm just so frustrated.

Oh...I actually moved into this house Sept. 2014. Still have boxes everywhere and furniture in the basement/rooms they don't belong in...lol. I did have to rip out & install new flooring and paint everywhere, so I'm going to use that as my excuse!
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Old 07-20-2015, 09:46 AM #13
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Ibuprofen can really eat your gut. I can take the liqui-gels but not the regular tablets. Having that pill sit in your stomach may contribute. Love the 'get your mind off the pain" comment. OMG. Hard to do if you are writing about your pain all day. I am with you on not keeping a pain diary. Maybe log something on a calendar if you had a sentinel event but other than that...microfocusing on it makes it bigger.

On having CRPS or not...I heard the shoe comment too then saw another PM who said "you have CRPS'. I wouldn't worry too much about it. You know for sure you have a nerve injury. Can you have temp and color difference and intractable pain without CRPS just from that? Absolutely! Can you have CRPS somewhere on the spectrum just from that? Absolutely! Only God knows for sure what's going on in there...


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Old 07-20-2015, 11:00 AM #14
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rsd's symptoms can vary as time goes on. it can hurt to the touch at first and then start hurting more internally in its later stages. meds also numb the pain of touch so the sock theory your dr has at least to me is not correct. some drs think that if you don't have physical symtoms that can be seen all of the time with rsd then it is not rsd or it has gone into remission. that is not always the case and a common misconception i hope that all drs will someday realize. all we can do is learn as much as we can about rsd and try to raise awareness to others. if i were you i would try to find another pm dr and neurologist for a second opinion. as for treatments there are many others along with meds. scs is not the only other solution unless you want to try it. but by learning more about rsd through research and others experiences on this forum you will find things like calmare, ketamine, hbot, nerveblocks and pain pumps. also hypnosis and pain coping drs. and accupuncture that some have found worked for them but did not for me. and there are other meds you can try if your dr okays them. just keep learning and searching for a dr who can help manage your pain better. i know its hard when you're feeling so much pain, but you will be surprised how much strength you have when you really need it. you can do it! just remember to never ever give up. you are not alone. soft hugs.
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Old 07-20-2015, 11:05 AM #15
Always_Believe Always_Believe is offline
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Ibuprofen can really eat your gut. I can take the liqui-gels but not the regular tablets. Having that pill sit in your stomach may contribute. Love the 'get your mind off the pain" comment. OMG. Hard to do if you are writing about your pain all day. I am with you on not keeping a pain diary. Maybe log something on a calendar if you had a sentinel event but other than that...microfocusing on it makes it bigger.

On having CRPS or not...I heard the shoe comment too then saw another PM who said "you have CRPS'. I wouldn't worry too much about it. You know for sure you have a nerve injury. Can you have temp and color difference and intractable pain without CRPS just from that? Absolutely! Can you have CRPS somewhere on the spectrum just from that? Absolutely! Only God knows for sure what's going on in there...


Exactly! That's why I'm so irritated with this PM. And yet, it took so long to get a referral so I am playing the game for now.

Ultimately I will probably end up as self-pay somewhere. I hate sounding like a drug seeker...I just want something to help the pain. I appreciate the attempts at narcotic alternatives but the increased pain is reducing my function at this point.
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Old 07-20-2015, 11:14 AM #16
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Originally Posted by RSD ME View Post
rsd's symptoms can vary as time goes on. it can hurt to the touch at first and then start hurting more internally in its later stages. meds also numb the pain of touch so the sock theory your dr has at least to me is not correct. some drs think that if you don't have physical symtoms that can be seen all of the time with rsd then it is not rsd or it has gone into remission. that is not always the case and a common misconception i hope that all drs will someday realize. all we can do is learn as much as we can about rsd and try to raise awareness to others. if i were you i would try to find another pm dr and neurologist for a second opinion. as for treatments there are many others along with meds. scs is not the only other solution unless you want to try it. but by learning more about rsd through research and others experiences on this forum you will find things like calmare, ketamine, hbot, nerveblocks and pain pumps. also hypnosis and pain coping drs. and accupuncture that some have found worked for them but did not for me. and there are other meds you can try if your dr okays them. just keep learning and searching for a dr who can help manage your pain better. i know its hard when you're feeling so much pain, but you will be surprised how much strength you have when you really need it. you can do it! just remember to never ever give up. you are not alone. soft hugs.
My neuro is actually addressing the issue much better than PM. With medicaid, it's a bit difficult to find providers, so I am pretty well stuck right now with the PM.

I know there are a lot of other treatments, my PM is not discussing those. He wants to do a LSB, repeat it if it's effective and then go on to SCS. I tried acupuncture for my endometriosis - not effective. I appreciate the "pain coping/pain psychologists" aspect but I am in real pain...not something I can think away or change my mindset to eliminate it. I continually do physically what I can. In my mind, I am 100%...my body tells me I'm not, not the other way around. While I agree that coming to an emotional place of acceptance/activity modification will help me on an emotional level, it isn't going to reduce the edema, the color changes, the temperature difference or the pain.

I have almost fallen 3 times already today due to my knee 'buckling/giving out' followed by sharp, shooting pain through my knee/down my leg, then razors in my foot. Thank God for the grab bar & fold down shower seat!
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Old 07-20-2015, 11:53 AM #17
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QUOTE=Always_Believe;1156256]My neuro is actually addressing the issue much better than PM. With medicaid, it's a bit difficult to find providers, so I am pretty well stuck right now with the PM.

I know there are a lot of other treatments, my PM is not discussing those. He wants to do a LSB, repeat it if it's effective and then go on to SCS. I tried acupuncture for my endometriosis - not effective. I appreciate the "pain coping/pain psychologists" aspect but I am in real pain...not something I can think away or change my mindset to eliminate it. I continually do physically what I can. In my mind, I am 100%...my body tells me I'm not, not the other way around. While I agree that coming to an emotional place of acceptance/activity modification will help me on an emotional level, it isn't going to reduce the edema, the color changes, the temperature difference or the pain.

I have almost fallen 3 times already today due to my knee 'buckling/giving out' followed by sharp, shooting pain through my knee/down my leg, then razors in my foot. Thank God for the grab bar & fold down shower seat![/QUOTE]



I wouldn't consider SCS or anything else invasive until you get peripheral nerve consult. You don't have all the options yet and may have something treatable. I sent you a PM....
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Old 07-20-2015, 11:57 AM #18
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Quote:
Originally Posted by Always_Believe View Post
My neuro is actually addressing the issue much better than PM. With medicaid, it's a bit difficult to find providers, so I am pretty well stuck right now with the PM.

I know there are a lot of other treatments, my PM is not discussing those. He wants to do a LSB, repeat it if it's effective and then go on to SCS. I tried acupuncture for my endometriosis - not effective. I appreciate the "pain coping/pain psychologists" aspect but I am in real pain...not something I can think away or change my mindset to eliminate it. I continually do physically what I can. In my mind, I am 100%...my body tells me I'm not, not the other way around. While I agree that coming to an emotional place of acceptance/activity modification will help me on an emotional level, it isn't going to reduce the edema, the color changes, the temperature difference or the pain.

I have almost fallen 3 times already today due to my knee 'buckling/giving out' followed by sharp, shooting pain through my knee/down my leg, then razors in my foot. Thank God for the grab bar & fold down shower seat!



I wouldn't consider SCS or anything else invasive until you get peripheral nerve consult. You don't have all the options yet and may have something treatable. I sent you a PM....
I will absolutely NOT do anything more than perhaps a visit to CO...lol

I did see your PM (). Getting ready for VR meeting...for all the good it is doing without a letter from my PCP that says I can work
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