Complex regional pain syndrome or reflex sympathetic dystrophy

Posted by oldnana @oldnana, Mar 22, 2016

After knee replacement, I developed RSD (reflex sympathetic dystrophy). I have had severe pain in my legs for a year and half. Does anyone have suggestion as to how I may control this disease

@overwhelmed

Just a follow-up to my reference of the cancer diagnosis that my husband had just received not long before my last post. Unfortunately, after becoming sick about three weeks ago, we found out that he only has weeks to live. His cancer started in his colon, went to the liver, lungs and bone…..all without any symptoms until 3 weeks ago. Now he is in liver failure. He has been my support for the past 8 years in dealing with CRPS until we had exhausted all treatments….& now he is going to die in a matter of weeks!!! I just want to go with him…It should have been me…I have been hoping to die as a means to escape this terrible pain. I do not have a life, it is merely an existence!!!! I will be left alone with no family and only one friend that has continued to be my friend through CRPS.

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Over whelmed, I can’t help but feel a heavy heart for you. When my husband
had his heartattact two years ago August, an thought he wouldn’t make it, I
didn’t know how I would live with out him. He did make it and now I try to
make sure he stays healthy. BUT, we can’t know what tomorrow brings. Please
stay in touch with us, and let us know how you and your husband are doing.
Salena

salena

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@overwhelmed

Just a follow-up to my reference of the cancer diagnosis that my husband had just received not long before my last post. Unfortunately, after becoming sick about three weeks ago, we found out that he only has weeks to live. His cancer started in his colon, went to the liver, lungs and bone…..all without any symptoms until 3 weeks ago. Now he is in liver failure. He has been my support for the past 8 years in dealing with CRPS until we had exhausted all treatments….& now he is going to die in a matter of weeks!!! I just want to go with him…It should have been me…I have been hoping to die as a means to escape this terrible pain. I do not have a life, it is merely an existence!!!! I will be left alone with no family and only one friend that has continued to be my friend through CRPS.

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Thank you very much Medic7054.

I wish you & your wife better health and happier days.
There truly is not much to life if you do not have your health that is for
sure!!!
Do you not find it hard to look to the future with any hope?
I feel that I have only been “existing” for the past six or seven years.
All the best.

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I am not really looking forward to the rest of my life in pain, but what scares me the most is living it alone.

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@overwhelmed

Just a follow-up to my reference of the cancer diagnosis that my husband had just received not long before my last post. Unfortunately, after becoming sick about three weeks ago, we found out that he only has weeks to live. His cancer started in his colon, went to the liver, lungs and bone…..all without any symptoms until 3 weeks ago. Now he is in liver failure. He has been my support for the past 8 years in dealing with CRPS until we had exhausted all treatments….& now he is going to die in a matter of weeks!!! I just want to go with him…It should have been me…I have been hoping to die as a means to escape this terrible pain. I do not have a life, it is merely an existence!!!! I will be left alone with no family and only one friend that has continued to be my friend through CRPS.

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I am so sorry for your suffering…my prayers are with you that you can survive the ordeal and find that reason for living. It is out there. God bless…
Mariah

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Just checking on @medic7054 and @overwhelmed— how are y’all doing?? Mariah

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@colleenyoung

Hi @overwhelmed,
Thank you for this comprehensive post about CRPS
Here is the video link to the research you mentioned, done by Sean Mackey, MD, PhD, is a Professor of Anesthesiology at Stanford University Published on Mar. 19, 2013.

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I currently take 150 mg of Lyrica twice a day. I also take 60 mg of Cymbalta a day. The Cymbalta has made a world of difference. I still hurt but the Cymbalta takes away the pain and I hardly ever have to take a pain pill. I went to Vanderbilt to see a neurologist and the only thing he offered me was a higher dose of Cymbalta. He told me I could take up to 120 mg a day but said every time you increase the dosage, you increase the chance of side effects and one of the side effects was loss of memory. So, at this time, I am afraid to increase the dosage. I will consider this only if it becomes unbearable.

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@colleenyoung

Hi @overwhelmed,
Thank you for this comprehensive post about CRPS
Here is the video link to the research you mentioned, done by Sean Mackey, MD, PhD, is a Professor of Anesthesiology at Stanford University Published on Mar. 19, 2013.

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@oldnana, I’m tagging a few other members who have or are taking Cymbalta. @blindeyepug @workwithkids @salena54 @dlady @bobsconnect what might you add to OldNana’s thought about increasing the dosage?

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@colleenyoung

Hi @overwhelmed,
Thank you for this comprehensive post about CRPS
Here is the video link to the research you mentioned, done by Sean Mackey, MD, PhD, is a Professor of Anesthesiology at Stanford University Published on Mar. 19, 2013.

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Thanks for the Cymbalta info. Losing memory is excruciating- mimics Alzheimers. I already have those issues from other current meds, so don’t want to add to it!

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@overwhelmed

Just a follow-up to my reference of the cancer diagnosis that my husband had just received not long before my last post. Unfortunately, after becoming sick about three weeks ago, we found out that he only has weeks to live. His cancer started in his colon, went to the liver, lungs and bone…..all without any symptoms until 3 weeks ago. Now he is in liver failure. He has been my support for the past 8 years in dealing with CRPS until we had exhausted all treatments….& now he is going to die in a matter of weeks!!! I just want to go with him…It should have been me…I have been hoping to die as a means to escape this terrible pain. I do not have a life, it is merely an existence!!!! I will be left alone with no family and only one friend that has continued to be my friend through CRPS.

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Hey! I just want to check to see how you’re doing. Mariah

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@overwhelmed

Just a follow-up to my reference of the cancer diagnosis that my husband had just received not long before my last post. Unfortunately, after becoming sick about three weeks ago, we found out that he only has weeks to live. His cancer started in his colon, went to the liver, lungs and bone…..all without any symptoms until 3 weeks ago. Now he is in liver failure. He has been my support for the past 8 years in dealing with CRPS until we had exhausted all treatments….& now he is going to die in a matter of weeks!!! I just want to go with him…It should have been me…I have been hoping to die as a means to escape this terrible pain. I do not have a life, it is merely an existence!!!! I will be left alone with no family and only one friend that has continued to be my friend through CRPS.

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I am getting along ok. I hurt but nerve pain is not too bad.

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Hey @rowan. Thanks for checking in and bringing @oldnana back into the conversation. I, too, would like to hear how @medic7054 and @overwhelmed are doing? @salena54, we haven’t heard from you for a while either.

@rowan, how are you doing these days?

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Sorry I havent posted latly. I have been with my mom at the hospital, she has lug cancer. It takes up her whole left lung. I put her in the nursing home yesterday. She also has alztimer. My MRI went well, I have scare tissue due to the head injury which is what they belive is cousing my syptoms. They could use radiation to help clear some of the scaring, but I need to think about it. I just dont want to go through anything else right now. Its been such a fight with mom, she has become really mean spirited and hard to work with, its very draining. I will try to post more being shes in a safe place. Please pray , and thanks for asking how Ive been doing, it means alot to me.

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@overwhelmed

Just a follow-up to my reference of the cancer diagnosis that my husband had just received not long before my last post. Unfortunately, after becoming sick about three weeks ago, we found out that he only has weeks to live. His cancer started in his colon, went to the liver, lungs and bone…..all without any symptoms until 3 weeks ago. Now he is in liver failure. He has been my support for the past 8 years in dealing with CRPS until we had exhausted all treatments….& now he is going to die in a matter of weeks!!! I just want to go with him…It should have been me…I have been hoping to die as a means to escape this terrible pain. I do not have a life, it is merely an existence!!!! I will be left alone with no family and only one friend that has continued to be my friend through CRPS.

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@ overwhelmed, how are doing. Have been on my heart. Hope you are well. Love and prayers Salena54

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@salena54

Sorry I havent posted latly. I have been with my mom at the hospital, she has lug cancer. It takes up her whole left lung. I put her in the nursing home yesterday. She also has alztimer. My MRI went well, I have scare tissue due to the head injury which is what they belive is cousing my syptoms. They could use radiation to help clear some of the scaring, but I need to think about it. I just dont want to go through anything else right now. Its been such a fight with mom, she has become really mean spirited and hard to work with, its very draining. I will try to post more being shes in a safe place. Please pray , and thanks for asking how Ive been doing, it means alot to me.

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So good to hear from you Salena. Thanks for taking the time to write. Sorry to hear about your mom. Family caregiving is one of the most meaningful and challenging jobs out there. Your mom is lucky to have you. I know its draining and sometimes impossible to see beyond the mean-spiritedness, and know its more the disease talking than the person.

If you wish, please use the Connect community as a sounding board for your decision-making about radiation. You can tell us more when you’re ready.

Liked by kareniowa

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@ collenyoung, thank you, I will. I have had so many emotions in the last three weeks. I will go ti that site, it would be good to hear what others think and say. I am thankful for this site it is most helpful.

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