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 04-06-2010, 11:17 PM #1
Lisa in Ohio Lisa in Ohio is offline
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Lisa in Ohio Lisa in Ohio is offline
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Confused what is full body RSD?

can anyone help me to understand what full body and internal RSD are?
I was diagnosed late with RSD and am currently waiting approval for a SCS.
Not sure if this is a good thing, but the Doc. said if this does not work nothing will. I am now having kidney, neck and head pain and am hoping that this is not a spread of this disease. Thank you all for being willing to share your stories and concerns, until I got lucky and found this site, I really felt all alone. My heart goes out to all of you and your families. Thanks, Lisa
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Old 04-06-2010, 11:41 PM #2
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Default Hello Lisa !

And WELCOME to a wonderful forum ! You are sure to get a lot of support here! Several RSD folks have their stories to share regarding the SCS.

We also have a forum here specific to SCS/Pain Pump discussion
here is the direct link to click on :

http://neurotalk.psychcentral.com/fo...ysprune=&f=118

You can read other's testimonies, some good, some not so good, but it's important to hear both sides of what could be expected.
You might also ask your doctor about the pain pump.....that would also be an option. Too many Dr's present the SCS as a last option, but there ARE Dr's willing to do the pain pump and it has proven effective as well....

I wish you the best as you seek out information. It's a huge decision to make.
Get as many facts as you can. Be sure to ask your Dr about the possibility of RSD spread after getting an implant.....that has been the experience of several here.

Truly Caring
Rae
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Old 04-06-2010, 11:57 PM #3
AintSoBad AintSoBad is offline
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Welcome Lisa:
Rae is leading you correctly.
I've had Rsd since '83, making it a while.
I've never had anything implanted, (I get by on Methadone, Cymbalta, Aleve, depending on the weather, and Diazepam, and Zanaflex for sleep, the other thiings, Imitrex for Migraine.

Simple huh?
That' just a cocktail. and it's widely used.

I'm beginning to understand that once you hit 10 years )apprx( , you'll start to go internal.
You get gastro problems, and internal pain.

Unfortunately, the RSD does, and will, spread.

KEEP MOVING! No matter how crappy you feel!

Anyway, Having this RSD, TOS, Discs, and a Traumatic Brain Injury, (two separate accidents).... I must say this to you.

Find out more about the "Pump", which I've heard so much good about, and opposed to the stimulator, not so much good about.

I know many folks, who have had the Stim, taken out. OUCH!

Those I know with Medicinal pumps, seem well, FAR better off. It's the only thing I would consider.

But, this is YOUR decision only!
Talk to some folks. This is a great place!
I do think that there's a different thread on this topic alone.

i wish you nothing but the best.

Pete
asb
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Old 04-07-2010, 10:11 AM #4
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Hi Lisa
Im saden to hear about your condition,,,,I agree with pete,,be carefull with the SCS,,it can cause spread,,,but it can help,,but the % of the people that I have talked with,,,it either causesed a spread immediately or over time,,but Ive heard a couple of cases that it worked,,Its worth a shot,,but I'd opt for the painpump myself,,,try to find out if your in SMP or SIP . The SCS trial will probually let you know fast,,But about the full body,,my opinion, in my case,,,I had it kick in after 7-8 months onset of contracting rsd,,,remember they changed the name to crps for mumerous reasons,,one is the [ C ] stands for complex,,,meaning no two people symptoms or treatment is the same nor works the same,,,we do have numerous cookie cuttter things and meds that seem to help tho..I know of many people who have rsd for many years and not go into internal,,And then there are several on this formum includeing me that went into full body in less than a year,,,I believe that mine is due to an nerve entrapement that needs to be addressed and stress exasberaates it too,,rsdI ussualy spreads at a slower pace,and stage II[causalgia] ussualy is a more severe spread and at a faster pace because theres nerve damage or entrapment involved,,,,I hope and pray that you are ok and your condition does not spread and that you are blessed with a remission,,,,early treatment is crucial and keep moveing,,,I pray that God will reverse your condition,,,,,bobber
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Old 04-07-2010, 12:06 PM #5
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Originally Posted by bobber View Post
Hi Lisa
Im saden to hear about your condition,,,,I agree with pete,,be carefull with the SCS,,it can cause spread,,,but it can help,,but the % of the people that I have talked with,,,it either causesed a spread immediately or over time,,but Ive heard a couple of cases that it worked,,Its worth a shot,,but I'd opt for the painpump myself,,,try to find out if your in SMP or SIP . The SCS trial will probually let you know fast,,But about the full body,,my opinion, in my case,,,I had it kick in after 7-8 months onset of contracting rsd,,,remember they changed the name to crps for mumerous reasons,,one is the [ C ] stands for complex,,,meaning no two people symptoms or treatment is the same nor works the same,,,we do have numerous cookie cuttter things and meds that seem to help tho..I know of many people who have rsd for many years and not go into internal,,And then there are several on this formum includeing me that went into full body in less than a year,,,I believe that mine is due to an nerve entrapement that needs to be addressed and stress exasberaates it too,,rsdI ussualy spreads at a slower pace,and stage II[causalgia] ussualy is a more severe spread and at a faster pace because theres nerve damage or entrapment involved,,,,I hope and pray that you are ok and your condition does not spread and that you are blessed with a remission,,,,early treatment is crucial and keep moveing,,,I pray that God will reverse your condition,,,,,bobber
Dear Lisa....

You sound so sweet!! So nice to have you join us.. I am however very sorry in that you suffer from RSD as well...Lisa, I am a SCS person..I had mine implanted in 9/08...Sadly I did not benefit from it..it caused my RSD to get "mad" when I used it and it has spread as a result also..Plz. ask lots of questions, read on this forum and do your homework before having it..some people benefit others don't..we are all different..As far as the internal portion of your question..vs. whole body... whole body embraces the thought of external involvement..each limb and more as well as internal meaning..exactly that in it is inside of us as well..Usually the way to determine inside you will feel the same burning pain internally as you do on the outside of your body...and our organs could stop functioning properly.. Hard pill to swallow I know..and I am sorry to talk about it like..pass me the milk plz..but I want you to know that we are all close and family here..We take care of each other..when it is a good day we cheer for eachother when it's a bad..we shoulder eachothers pain...I am happy you found us..we are lucky to have you..Let me know whatelse I can do for you...

Genlte hugz,

Kathy
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Old 04-08-2010, 09:07 PM #6
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Quote:
Originally Posted by Lisa in Ohio View Post
can anyone help me to understand what full body and internal RSD are?
I was diagnosed late with RSD and am currently waiting approval for a SCS.
Not sure if this is a good thing, but the Doc. said if this does not work nothing will. I am now having kidney, neck and head pain and am hoping that this is not a spread of this disease. Thank you all for being willing to share your stories and concerns, until I got lucky and found this site, I really felt all alone. My heart goes out to all of you and your families. Thanks, Lisa
My daughter has FB RSD. Her GI, Kidneys and Female Organs have all been affected as well as her skin and the typical burning pain in the limbs. She however has that pain all over as opposed to the injured area. Migrains, Jaw Pain, and internal bleeding from the kidneys are a part of it. She aslo has Gastro Paresis from the GI tract (upper and lower) shutting down.
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Old 04-09-2010, 06:18 AM #7
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Originally Posted by bubbleshea View Post
My daughter has FB RSD. Her GI, Kidneys and Female Organs have all been affected as well as her skin and the typical burning pain in the limbs. She however has that pain all over as opposed to the injured area. Migrains, Jaw Pain, and internal bleeding from the kidneys are a part of it. She aslo has Gastro Paresis from the GI tract (upper and lower) shutting down.
Dear Bubbleshea...

I am so so sorry to read your post...My heart breaks for your daughter and you and your entire family...RSD is so dang relentless and mean to the core.. I have whole body plus some internal involvement..inc. the jaw pain..that in itself is just aweful..again..I am so sorry and I will keep your family in my prayers...Let us know if we can help on here somehow...

Take care, Kathy
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Old 04-09-2010, 10:15 PM #8
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Quote:
Originally Posted by Lisa in Ohio View Post
can anyone help me to understand what full body and internal RSD are?
I was diagnosed late with RSD and am currently waiting approval for a SCS.
Not sure if this is a good thing, but the Doc. said if this does not work nothing will. I am now having kidney, neck and head pain and am hoping that this is not a spread of this disease. Thank you all for being willing to share your stories and concerns, until I got lucky and found this site, I really felt all alone. My heart goes out to all of you and your families. Thanks, Lisa
Hi Lisa, and Welcome to this warm group of friends. There is a lot of combined knowledge here, caring, sympathetic friends.
I have had RSD 15 years and full body and internal. Full body is sometimes also called generalized. all limbs-spine. hands, feet, Internal means internal organs. Most on here talk about the pelvic region. One of the symptoms is heat, sweating. The inner thigh to the touch can be red and hot. lower back, butt- hot to the touch. Also burning inside. Can have rash on the outside of pelvic area. I also have neck pain and terrible headaches. I do believe have kidney involvement, need to get another check up.
I got RSD following surgery. It is a common cause. That is also why when we already have RSD, surgery is a huge risk. Please do your research before any procedure.
A website for RSD is rsdrx.com Dr. Hooshmand from Florida is retired, but has his website up and very informative. If you have any questions, please PM me (private message) and I'll try to share anything I can. One of your new friends, loretta
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Old 04-09-2010, 10:22 PM #9
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Quote:
Originally Posted by bubbleshea View Post
My daughter has FB RSD. Her GI, Kidneys and Female Organs have all been affected as well as her skin and the typical burning pain in the limbs. She however has that pain all over as opposed to the injured area. Migrains, Jaw Pain, and internal bleeding from the kidneys are a part of it. She aslo has Gastro Paresis from the GI tract (upper and lower) shutting down.
I'm so sorry your daughter has this terrible disorder. I'm a Mom with it, including the internal area and full body. What kind of treatment is she getting. I'm fully mobile thru physical therapy, massage therapy and swimming with exception of one hand- 50% frozen like a claw-delayed diagnosis and treatment. I have a wonderful neuro, psych, and pharmacologist call him my 3 in 1 doc. I'm thinking of HBOT treatment. He just built two clinics with them. Arizona Lots of wonderful informative, caring friends here. Please let us know how we can help. One of your new friends, loretta
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Old 04-10-2010, 07:30 PM #10
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I'm so sorry your daughter has this terrible disorder. I'm a Mom with it, including the internal area and full body. What kind of treatment is she getting. I'm fully mobile thru physical therapy, massage therapy and swimming with exception of one hand- 50% frozen like a claw-delayed diagnosis and treatment. I have a wonderful neuro, psych, and pharmacologist call him my 3 in 1 doc. I'm thinking of HBOT treatment. He just built two clinics with them. Arizona Lots of wonderful informative, caring friends here. Please let us know how we can help. One of your new friends, loretta
Kate is 22. She has 3 inch lesions all over her skin, and is barely mobile. her right leg is almost fully shut down. She cannot eat and we are lucky to get the drinks in her. Her Gastro Paresis has caused bezoirs in her stomach and they intern caused a fungle infection in her GI tract. She is becommimg incontinent as well and is actively bleeding from her kidneys. She is on the normal meds Neurontin, Kalonopin, Trazadone, Morphine ER as well as Percocet as needed. she in on a water pill, Cardio meds for rapid heart and some GI meds. All the docs around here dont know waht else to do. Her doc here got in touch with Schwartzman who advised that nerve blocks etc at this point will do nothing. I thin they are discussing the 4hour/3 day Ketamine. but of course who knows when that will happen. Prayers!!
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