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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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Unread 12-07-2012, 11:35 AM   #481
fbodgrl
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Hi everyone

My name is Shelly. I am 39 and was diagnosed with RSD around 6 months ago. It is in my left arm/hand. I know it may spread. I also have some post surgical nerve damage in that hand. I am right handed so at least at this point my dominant hand works correctly.

Prior to my doctor diagnosis I had 3 separate surgeries on my arm. It all started from a median nerve entrapment at the elbow. A year later I also had carpal tunnel in the same arm. The 3 surgeries were all in less than a year and a half.

I won't bore you with all the details of surgeries, therapies, etc. As time goes on I am sure I will fit in parts of the stories here and there.

I am an animal lover I have 1 dog a pit bull named Khan. I am training him to be my service dog. I have 5 cats ranging in age from 13 yrs old to 1 year old. I also have a chinchilla and a red eared slider turtle. My animals have really helped me keep it together.
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Unread 12-07-2012, 11:23 PM   #482
Mark56
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Thumbs up Hi Shelly

Welcome to the Board!!!! On behalf of a whole bunch of folks here, I am waving back at you. The bain thread pool of the RSD CRPS issues is found here, just click it and away you go to the forum.

http://neurotalk.psychcentral.com/forum21.html

My Sis has had the dread RSD for many years now, and some time ago, I posted on the RSD forum, above, at her request to share her history, ups, downs, trials of dealing with it. Now she has a dog who rides around on her motorized wheel chair with her serving her needs, and even helping her distinguish the proper pills to take at appropriate times throughout the day.

Your work training your Khan is Very Proactive and Brave as you approach dealing the ultimate needs for Khan to help you with a variety of issues. What a cool way to anticipate and cope!

The menagerie you have is VERY interesting sounding, and having grown up in the "West" where chinchilla's have been raised by many, I am glad to learn you are raising one as a cudly friend. Sounds rather like a Tribble from Star Trek fame. I will bet petting your little chinchilla brings comfort to you as well.

I am sad you have to cope with RSD and its post surgical manifestation, but you truly sound as though you have a good outlook! Kinda like Sis Terri. She still has the bright smile whenever I am able to make it to town to check up on her.

Wander on over to the RSD forum and check out the folks,
You will be Blessed that you did,
Caring deeply,
Mark56
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Unread 12-10-2012, 04:57 PM   #483
CRPSsongbird
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Default Hi, Newbie here!

Hello,

My name is Emily (last name fake). I'm 29yrs old and a mother of 1 beautiful, sweet,smart,goofy little 7yr old.I was diagnosed with CRPS I, though i think it might be CRPS II. I've been having severe pain,cold,numbness, slight swelling. Mainly Just a LOT of pain. It seem to be progressing and getting worse not better. I know I am early in the "condition:" but this has started to severely impact my life.

ON 10/25/12 I (at my dr's office advice) went to the E.R. I was have Dysfunctional Uterine bleeding, possibly caused by a fibroid. Extreme cramps and SUPER heavy bleeding. TMI I know sorry. The doctor ordered a blood sample to see how much blood I'd lost and if I would need a transfusion. Well I didn't know it at the time, but it went horribly wrong.

3 different people tried to get a blood sample. The first did the most damage. He was either very very new, or still in training. Was very unsure of what he was doing and made me feel apprehensive. But everyone has to learn so I just tried to let him do his job. He put a blue rubber tourniquet on both arms. He put the left one on waaay too tight. I told him it was too tight but he said well it needs to be. He tried to get a draw from my right arm, but left the one on the left as well. I asked if we could take it off but he said he wanted to leave it one in case he needed to try that arm. I am no stranger to venipuncture so was confused at this. He fished around a bit in my right arm a ended up "blowing" my vein. A silver dollar sized bruise was left , and did not go away for a week or two. He started apologizing like crazy and went to go get someone else then came back and took off the tourniquets.
The second person was a female nurse. She was almost as bad and in a few ways worse then the first guy. She didn't wrench the tourniquet on, she fished around for about 10-15mins in my left elbow trying to shove the catheter tube into the vein. She kept saying "I don't understand. I'm getting flash back but it's not going in" I was complaining about the pain. I think she kept tapping a nerve (radial). I felt like an electric knife was stabbing my elbow.She was unsuccessful in my elbow and moved to the back of my left hand. Tried, fishing around more, for about 5 mins and finally went to get the charge nurse who was able to get a good draw from my right arm. I was given a shot of Dilaudid for the severe cramping so I didn't really notice my arm until it wore off the next day.
I'm sure you all can guess or relate to the following weeks. Being bounced back and forth from doctors to E.R. Getting the run around from the
hospitals insurance/risk management. Trying top get approved to see a Specialist for CRPS in Spokane. Their office wouldn't see me without approval from the claims department....ya. So that's my story insofar. Right now I just really want then to get my medication combination figured out, so I'm not in constant pain. It is really interfering with my life. My daughter is not getting her "normal" mommy. I try to keep a strong face for her but sometimes it;s really difficult when the pain is strong enough to make you cry. She really is a sweetheart and said "Mommy I'm prayering for you to get better" I wish she didn't have to see me like this.

I will say that having this forum. Has been an invaluable tool! It's so great to have a group of people who understand, Who know the the pain isn't all that CRPS does. It effects your family, work and relationships. Or just how other people either see you as overreacting or faking it for drugs, when you have legitimate (severe) pain. And even though the medication combo's are different for everyone, having different suggestions to what worked for them might be something that works for you. I had never even heard of this condition until this happened. Oh boy, do i wish I had the funds to make people aware how serious this condition is and start a foundation for those who need help recovering. Or some Center for research and treatment that could discover exactly how this condition starts ans how to cure it!! So even though I haven't gone through the total gambit yet, wow that feels daunting, I empathize a lot more with nerve disorders!! Nerve pain just plain SUCKS!

So thank you for reading the "book" lol and I truly want to say a great big THANK YOU!!!! To everyone out there lending and "hand or "ear" or just plain empathy.....truly THANK YOU!

It's nice not to feel alone!
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Unread 12-10-2012, 07:30 PM   #484
ginnie
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I did read your post. I am glad you found Neuro Talk. Lots of understanding goes around on this site. There even may be more information about CRPS to direct you to better help. I have heard of Ketamine infusions, are starting to show some promise.
I answered you as well because I was not in the greatest health when my children were young either. You can only do your best. Your child will grow up with compassion. I really hope there is more help for your condition. Neuro talk will be here to listen anytime. ginnie
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Unread 12-13-2012, 12:24 AM   #485
Djhasty
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Post Hasty Introduction

Keeping it short ...
Diagnosed February 2008 with RSD/CRPS Type ii Stage 3 from my lower back to my toes (both sides) as a result of a fall in November 2004. It has progressed to me barely walking. I use a chair for anything beyond a few feet. Some symptoms include spasticity, Dystonia, week left side, eye pain I call eyegraines (my Doc calls migraines), bladder disfunction requiring regular catheterization, as well as other typical RSDCRPS symptoms. Have many heavy medications, as well as a baclofen pump in my belly that feeds a constant drip into my spine. Shouldn't, but do seek pity occasionally. I know; I am working on that.

Am a young Grandmother of 2 with one more on its way in January. Beauties and blessings each one.

Retired on Disability from the National Park Service in 2010. Loved that job. It took me many beautiful places and introduced me to numerous interesting and dedicated people.

Was a novice but chronic traveler, hiker and biker prior to 2008.

Deborah Hasty
Omaha Nebraska
Type ii Stage 3
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Unread 12-17-2012, 03:31 PM   #486
alt1268
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Welcome Djhasty, I am sorry you have such a time with CRPS. May I ask how far you fell? Please feel free to look around, post questions, or answer others. We are all freinds here and learn from one another.


Quote:
Originally Posted by Djhasty View Post
Keeping it short ...
Diagnosed February 2008 with RSD/CRPS Type ii Stage 3 from my lower back to my toes (both sides) as a result of a fall in November 2004. It has progressed to me barely walking. I use a chair for anything beyond a few feet. Some symptoms include spasticity, Dystonia, week left side, eye pain I call eyegraines (my Doc calls migraines), bladder disfunction requiring regular catheterization, as well as other typical RSDCRPS symptoms. Have many heavy medications, as well as a baclofen pump in my belly that feeds a constant drip into my spine. Shouldn't, but do seek pity occasionally. I know; I am working on that.

Am a young Grandmother of 2 with one more on its way in January. Beauties and blessings each one.

Retired on Disability from the National Park Service in 2010. Loved that job. It took me many beautiful places and introduced me to numerous interesting and dedicated people.

Was a novice but chronic traveler, hiker and biker prior to 2008.

Deborah Hasty
Omaha Nebraska
Type ii Stage 3
__________________

.


GOD help me be faithful in the midst of my suffering. Alt1268
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Unread 12-18-2012, 03:47 AM   #487
Djhasty
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Quote:
Originally Posted by alt1268 View Post
Welcome Djhasty, I am sorry you have such a time with CRPS. May I ask how far you fell? Please feel free to look around, post questions, or answer others. We are all freinds here and learn from one another.

Sure. I fell while roller blading on the paved trails near my work (at the time). It really wasn't a big fall. I got overly confident while zipping along on the blades. I hit a twig or rock and went down on my left side. I landed on my left hip and caught myself with my hands. I did have all my safety gear on: helmet, elbow and knee pads, gloves. Yes it did hurt, but I figured the pain was my price to pay for trying to learn to roller blade at 40. Other than just plain being beat up, I had fractured my hip and squashed out some disk tissue at L5S1. That was in 2004. My diagnosis with RSDCRPS wasn't till 2008. Looking back though, I can see a lot of the earlier symptoms were dismissed as other ailments. My first diagnosis in 2008 was Dystonia. I couldn't control my left leg. That diagnosis was later changed to RSDCRPS. It took the right Doctor to figure it out. I was fortunate to have picked her out of the Yellow Pages. The diagnosis hit me from the blind side. I hadn't ever heard of RSDCRPS. I could add a lot more detail, but I believe all of us here can attest to that.

Glad to have found this forum. Hoping I can learn a few things. Doesn't seem to be very many, if any, RSDCRPS patients in the area where I live. In fact, not many of my Doctors have heard of the thing either. Looking to share too.

So the answer to your question is a few feet then a tumble.

Thank you.
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Unread 12-22-2012, 08:54 AM   #488
whistand
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Default New Member daughter with RSD for years

Hello,
My daughter has full blown RSD head to toe. She just saw a dr at Drexel in Phila who wants to put her in a 5 day coma in a South American Country. Insurance will not cover. It took 3 years to get this appt, (was orginally for me, I was misdiagnosed with RSD for 10 years. My RSD was really Chairi.)

My daughter has been ill since middle school and is now in college. She needs relief. S/S: full body pan, rash, mottled skin, feet bluish, cold extremities, headache nonstop for at least 5 years. She has been to the "best". One dr at NY Presby said she will never be able to work FT nor would she be able to go to college. NEED ANSWERS.
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Unread 12-31-2012, 07:12 PM   #489
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Quote:
Originally Posted by Sheri View Post
Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.
I am brand new and finding it difficult to navigate around.... I just saw a dr.... re: spinal implant consult of St. Jude Model... and am very confused and concerned
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Unread 01-01-2013, 05:59 PM   #490
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Originally Posted by Clerk10 View Post
I am brand new and finding it difficult to navigate around.... I just saw a dr.... re: spinal implant consult of St. Jude Model... and am very confused and concerned
Welcome, I am new also. Sorry I cannot answer your question, but I am sure someone here can. Hugs
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