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 07-18-2015, 10:12 PM #1
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hi again always. hope you have a better nite tonite and can get some sleep. i'm sending comforting vibes your way. take care.
Thank you. This has been a physically and emotionally exhausting past 10 days. In addition to all the doctor biznotch (neuro/emg/3 phase scan/endocrinology/blood tests/PM), pain up and down with some major swelling and multiple times being unable to stand, getting ready for a visit from my son, d-i-l & grands, finishing up major home repairs, we have also had some horrible weather. Today a tornado touched down within blocks of my house.

I was feeling like there was something to grab onto until my PM appointment. I think the most discouraging aspect is that he wants to do a few LSB's and then a SCS. Insurance denied the LSB and yet no alternative was offered. Scratch that...cymbalta. I know this will come out as totally vain but my 5'1" body cannot handle any more than the 50 lbs these stupid meds that haven't done squat have already put on. I also cannot financially afford to buy any more clothes! So I am concerned about the cymbalta. I am also frustrated that no one seems to think about the breakthrough pain even IF the cymbalta does anything.

Dang...there I go again. I started a blog about self-advocating, hoping I will get a handle on that myself. I also have begun compiling some exercises that those unable to weight bear can do as well as lowered calorie meal plans.

I appreciate you all so much! It means so much to be able to share & know I am not alone.
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Old 07-18-2015, 11:44 PM #2
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Hi Always,
There's an old Native saying that might be helpful to remember. "Pain is natures way of telling you're alive".
Maybe it'll help. Maybe not...
It helps me to cope sometimes...
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Hope for better days.....
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Old 07-19-2015, 01:17 PM #3
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hi always. i hope you're having a better day today and enjoying your visit with your son. i just wanted to let you know that my pm dr prescribes neurontin (gabapentin) and a pain killer to manage my rsd pain and my psychiatrist prescribes an antidepressant called zoloft and antianxiety med to help manage my stress due to rsd. i was given cymbalta for about a month instead of zoloft but it didn't help me. i found that zoloft helped more. but everyone is different. you may want to talk to your dr or find one to talk to about maybe prescribing neurontin (gabapentin) along with a pain med to manage your rsd pain. maybe cymbalta will be enough for you, but i found that it wasn't for me. but everyone is different and i hope it helps you. but if it doesn't i just wanted you to know of other options that you might want to discuss with your pm dr. as far as a scs everyone is different with that too. i personally felt that it was too invasive for me and my neurologist concurred so i decided not to go that route. but some people have found that it helps. you may want to get several drs opinions on this before making a decision about it. and some drs are very helpful in setting up payment plans and working with you to help you get the medical treatmenst you need. just make sure you are covered before trying anything because some treatments like the scs are very expensive. whatever you decide i hope you feel better soon. there are good drs out there that can help you so don't ever give up hope. sending soft hugs your way.
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Old 07-19-2015, 02:28 PM #4
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hi always. i hope you're having a better day today and enjoying your visit with your son. i just wanted to let you know that my pm dr prescribes neurontin (gabapentin) and a pain killer to manage my rsd pain and my psychiatrist prescribes an antidepressant called zoloft and antianxiety med to help manage my stress due to rsd. i was given cymbalta for about a month instead of zoloft but it didn't help me. i found that zoloft helped more. but everyone is different. you may want to talk to your dr or find one to talk to about maybe prescribing neurontin (gabapentin) along with a pain med to manage your rsd pain. maybe cymbalta will be enough for you, but i found that it wasn't for me. but everyone is different and i hope it helps you. but if it doesn't i just wanted you to know of other options that you might want to discuss with your pm dr. as far as a scs everyone is different with that too. i personally felt that it was too invasive for me and my neurologist concurred so i decided not to go that route. but some people have found that it helps. you may want to get several drs opinions on this before making a decision about it. and some drs are very helpful in setting up payment plans and working with you to help you get the medical treatmenst you need. just make sure you are covered before trying anything because some treatments like the scs are very expensive. whatever you decide i hope you feel better soon. there are good drs out there that can help you so don't ever give up hope. sending soft hugs your way.
Thank you! My son & the grands aren't coming until the end of August but I am still in the moving in phase...lol

I've actually been on gaba...twice. It did absolutely nothing for me except add a total of 50 lbs. New PM prescribed lyrica (not covered & $350, so no lyrica for me). His solution is cymbalta but I am very leery of that as well.

I really appreciate your thoughts.
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Old 07-19-2015, 02:34 PM #5
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cymbalta is use to help treat pain and depression and though it didn't work for me that doesn't mean it won't work for you. everyone reacts differently to things so if your dr thinks it might help it may be worth a try. but that has to be your decision along with your drs. also, i were you i would try checking with your dr to see if there is a way to get help so that you can get the meds you need at an affordable price. if they confirm your diagnosis maybe they can help you with a payment plan. it can't hurt to ask him. hope you feel better soon. take care.
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Old 07-19-2015, 05:54 PM #6
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Hi Always,

I get where you are coming from with the meds-induced weight gain. I piled on over 60lbs in under 3 years partly because of Mirtazapine and Metoclopramide.

It has led to so many accelerated issues, including pushing my blood glucose numbers over into full blown Diabetes. The last straw was a routine collapse 10 weeks ago which was so bad I broke ribs due to my weight landing on my arm. I am now fighting back, and succeeding, with a simple calorie controlled diet.

I hope you find a way to battle your demon too, I know how difficult it is.

Dave.
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Old 07-19-2015, 09:27 PM #7
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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 #8
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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 #9
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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 #10
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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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