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 01-13-2014, 12:19 AM #1
RSD ME RSD ME is offline
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Default Hope everyone is well

Hi all, I just wanted let you know that I hope you're all doing okay and your rsd pain is at the lowest levels possible, if not gone completely. I hope your New Year is going well too. Mine started out rocky on top of rsd pain, dealing with the loss of my Great Aunt and then dealing with drs that think they know everything about rsd when they don't. And then trying to find new drs that actually want to admit that they don't know everything about it and actually are trying to help me by listening to my symptoms and learning more about rsd. I don't know why some drs get so indignant and roll their eyes when I ask them if they know what rsd is when I first see them. I just want to make sure, and some don't know what it is. It's very frustrating. I think some say they know what it is, even when they don't. It's just silly and makes me move on to another dr. I have had my rsd spread confirmed by three drs, my pm and two rheumatologists this year. My arms have long hair growth on them and I have constant burning in my hands and intermittant burning in my feet. I'm not too happy about this, but am trying to accept and look for new procedures and meds to help. Going to check with my pm dr this week before I see my endo dr next week to schedule gall bladder surgery. Also seeing a new rheumatologist because my right hip pain and leg are so bad I can barely walk. Got blookwork and xrays last week and after I get results, getting an MRI to check for rhuematoid arthritis. I was also informed that rsd is an autoimmune disease. In the meantime, another tooth died. Not too much fun yet this year, but maybe this new drug RSD HOPE is talking about may prove to be the cure for rsd. I'm keeping my fingers crossed. I hope you are all having a better year then me. My thoughts and prayers are always with all of you. Take care.
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Old 01-14-2014, 12:08 PM #2
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Default Hey Renee :)

Quote:
Originally Posted by RSD RENEE View Post
Hi all, I just wanted let you know that I hope you're all doing okay and your rsd pain is at the lowest levels possible, if not gone completely. I hope your New Year is going well too. Mine started out rocky on top of rsd pain, dealing with the loss of my Great Aunt and then dealing with drs that think they know everything about rsd when they don't. And then trying to find new drs that actually want to admit that they don't know everything about it and actually are trying to help me by listening to my symptoms and learning more about rsd. I don't know why some drs get so indignant and roll their eyes when I ask them if they know what rsd is when I first see them. I just want to make sure, and some don't know what it is. It's very frustrating. I think some say they know what it is, even when they don't. It's just silly and makes me move on to another dr. I have had my rsd spread confirmed by three drs, my pm and two rheumatologists this year. My arms have long hair growth on them and I have constant burning in my hands and intermittant burning in my feet. I'm not too happy about this, but am trying to accept and look for new procedures and meds to help. Going to check with my pm dr this week before I see my endo dr next week to schedule gall bladder surgery. Also seeing a new rheumatologist because my right hip pain and leg are so bad I can barely walk. Got blookwork and xrays last week and after I get results, getting an MRI to check for rhuematoid arthritis. I was also informed that rsd is an autoimmune disease. In the meantime, another tooth died. Not too much fun yet this year, but maybe this new drug RSD HOPE is talking about may prove to be the cure for rsd. I'm keeping my fingers crossed. I hope you are all having a better year then me. My thoughts and prayers are always with all of you. Take care.
I have SFN and can totally understand what you are saying about dr's in general. I finally asked my neuro (don't like him very much) if he has treated other patients with SFN....of course he said yes....it was on the tip of my tongue to ask how many but decided not to

I am so sorry you are having so much trouble at the beginning of a new year

You're always so sweet and full of info.

Debi from Georgia
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Old 01-14-2014, 02:36 PM #3
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Renee,
That's not good to start off this way!!
I'm sorry about your tooth
Please don't give up & take care of yourself as best you can

Don't get me started on Dr.s "pretending" to know......

Yesterday I had my last follow up with the ortho. Dr. who did my surgery
over a year ago that started this rotten disease.
He looked at me like I was bug nuts crazy when I told him my P.M. Dr.
thinks it may be spreading to my foot. "It spread?" and shook his head.

Wishing you relief!!
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Old 01-14-2014, 04:09 PM #4
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Sorry that you are having such a difficult time Renee, I know it all has to be so tough for you to deal with. I sure hope things will improve for you soon. This is not a good way to start the year out, but let's hope you get it all over with now and the rest of the year will be better. This is what I am hoping for myself too

I understand, as most of us do, about the idiot doctors..ugh! I am in the process of looking for a new PM dr and it is not easy. My PCP is awesome, and I am lucky to have her, but PM drs here suck! I have already seen so many of them. I know that I am more complicated because of my allergies and drug intolerances and all the tried and failed treatments. They don't know what to do with me. Have had the same issues with neurologists here too.

Take care of yourself!
Nanc
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Old 01-14-2014, 07:15 PM #5
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Quote:
Originally Posted by AZ-Di View Post
Renee,
That's not good to start off this way!!
I'm sorry about your tooth
Please don't give up & take care of yourself as best you can

Don't get me started on Dr.s "pretending" to know......

Yesterday I had my last follow up with the ortho. Dr. who did my surgery
over a year ago that started this rotten disease.
He looked at me like I was bug nuts crazy when I told him my P.M. Dr.
thinks it may be spreading to my foot. "It spread?" and shook his head.

Wishing you relief!!
Boy oh boy..It sounds like we are going to the same DOCTOR...ha ha...I went to the pm doc on Friday..I told him it is going in my left..I got the look..I also told him hydrocodone makes me really hyper,and wide awake until wee hours..He said"I cannot believe that."I told him there are other people that react the same way.I went to a ER doc..in aug..for 50 stitches in my left leg and he said he reacts the same as I..Then I went to check out at PM..and the lady doing billing said her husband reacts the same..So after that said,he gave me oxycodone..which kept me awake all night,and hives all over..But he is the one who said I do not know what else to do..So he recommended the pain stimulator..
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Old 01-14-2014, 07:18 PM #6
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Quote:
Originally Posted by Nanc View Post
Sorry that you are having such a difficult time Renee, I know it all has to be so tough for you to deal with. I sure hope things will improve for you soon. This is not a good way to start the year out, but let's hope you get it all over with now and the rest of the year will be better. This is what I am hoping for myself too

I understand, as most of us do, about the idiot doctors..ugh! I am in the process of looking for a new PM dr and it is not easy. My PCP is awesome, and I am lucky to have her, but PM drs here suck! I have already seen so many of them. I know that I am more complicated because of my allergies and drug intolerances and all the tried and failed treatments. They don't know what to do with me. Have had the same issues with neurologists here too.

Take care of yourself!
Nanc
I really wonder about these doctors..i have med..issues too...Mine acts like he knows very little about RSD,,and just wants me gone...he does not know what to do or offer..I usually tell him what I want be doing research..
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