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)


advertisement
Reply
 
Thread Tools Display Modes
Old 10-07-2006, 11:29 PM #11
artist
Guest
 
Posts: n/a
artist
Guest
 
Posts: n/a
Default

Hi all,

Good idea, introducing ourselves.

I joined BT after I broke my left arm/wrist tripping over my dog, slipping on wet greenery and landing on the sharp edge of a step in a typhoon in June 2004. Later they found I also broke 2 ribs and a couple of hand bones too. This came soon after wrenching my left thumb out of its socket, never quite went back in.

So, distal radius fracture with ulnar styloid avulsion, emplastered for 7 weeks. One week after the cast was on, my wrist, ulnar-side, started being seriously painful in just one spot (near the styloid). Cast was changed twice, docs said well, you know, broken bones are sore...Began physio the day after the cast was removed, exercises, electric stimulation,hydrothingy, all that stuff and the ulnar just became more unbearable.

They started ice therapy and kabooom! instantly what had been agony became unbearable agony....the hyperesthesia started like a glove of horribly alive pain, whole hand blew up, went bright red and so now I'm officially an RSD sufferer.

In the past year, though, the RSD arm has kind of plateau'd but I've got problems now in my right arm. After all the tests, including MRI, I'm diagnosed with cervical spondylosis and spinal stenosis C4 - C6. Still not sure if the right hand pain is RSD spread, repetitive strain thingy or resulting from pinched nerve. Next doc's appt end of October, may learn more.

Yes, I'm an penniless artist, live alone, (my partner, a doctor, died 5 years ago -where are these people when you need them! ) in Hong Kong with my beagle (my best friend). I live now on an outlying island, very pretty and wild, lovely beach, great walking - nothing like anyone would ever imagine HK. Work from home so don't need to brave the highrise hell too often. Lived in HK 25 years and love the place. Great mixture of people; lots of Americans, Europeans, Australians, Japanese - everything, but mostly 98% Chinese. Originally a Brit, I lived in HK as a young child, moved back at about 30, no intentions of living anywhere else.

My saviours after RSD hit were you wonderful people. Throughout the whole ordeal, you have been unfailingly helpful and given such clear commom-sense advice that I trust you more than the doc's. I don't know what I'd ever have done without you.

I'd just like to take this opportunity to say a very big *THANK YOU*, thank you to *ALL* of you.

take care and all the best
  Reply With QuoteReply With Quote

advertisement
Old 10-08-2006, 03:25 AM #12
Cake Cake is offline
Member
 
Join Date: Sep 2006
Location: Australia
Posts: 148
15 yr Member
Cake Cake is offline
Member
 
Join Date: Sep 2006
Location: Australia
Posts: 148
15 yr Member
Default

Hi Everyone!

I'm Kate, I'm 28 but am another October birthday girl, as I'll be 29 on the 29th

I'm a mum of 4 kids- 3 girls, Bailey- 8, Liv (Olivia)- 6 and Hannah- 4 months. And a 4 year old son called Dayne. I'm studying an HR course so that one day, if my rsd lets me I can get a good job.

My rsd started in my right arm 6 years ago, from nerve damage during a blood test. Then it spread to my right leg in Jan this year after a White-Tailed Spider bite.

I've had breaks from my RSD thanks to ketamine infusions (3x low dose, 7 day awake ones) but am now back on meds again. My rsd is very out of control right now, spreading and changing quickly- I've had heaps of new symptoms in new areas just since mid August when my last infusion was unsuccessful.

My hubby is my carer, we've been together for about 11 years and I'd be lost without him!

I live in Melbourne, Australia- home of an amazing RSD DR so I'm very lucky there- and grew up in England, moving here when I was 13.

So thats me!
__________________
RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS.
Cake is offline   Reply With QuoteReply With Quote
Old 10-08-2006, 08:23 AM #13
miss irie miss irie is offline
Junior Member
 
Join Date: Sep 2006
Location: Burlington, ON Canada
Posts: 31
15 yr Member
miss irie miss irie is offline
Junior Member
 
Join Date: Sep 2006
Location: Burlington, ON Canada
Posts: 31
15 yr Member
Default

Hi, everyone.

My user name is Miss Irie (was the same on BT1) and I'm 42 years old -- soon to be 43. I'm married to a wonderful man and have a black lab I adore who keeps me constant company. I have one grown daughter who is herself married and recently blessed our family with a baby boy, Xander.

I live in Burlington, Ontario. I developed RSD after knee surgery to repair my ACL in September 2003. I haven't been able to work since Dec '03. I qualified for CPP Disability benefits on my first application and I also receive LTD benefit payments through insurance coverage with my employer. While I remain on the company books I have been unable to go back to my job (which I absolutely loved) as an Executive Assistant to the President of a telcom company.

I have been progressively going down hill with my RSD battle. It has spread (originally just my left leg) to my right leg and right shoulder. I find it nearly impossible to get around anymore. I require a cane to walk and I have a scooter I use when my pain levels are intolerable. I love my scooter but it is only a light duty machine and I won't be able to use it once winter comes. For now I'm speeding around on it and it has been fantastic to be able to get out of the house!

I live in a wonderful house which my husband and I bought in November 2005. We're first-time home buyers and I couldn't be more thrilled! We used to be avid power boaters but I had to give that up. We just sold our cruiser a month ago. I thought it would be really sad giving this up after 11 years, but it has actually given hubby and I a chance to spend more time together doing other things. It was time to let go for both of us and we're talking about joining a trivia club, card club, etc. to keep us busy over the winter months.

Although I have lots of physical challenges I am doing OK. I have a positive attitude and have realistic expectations of what I can accomplish. I am blessed with a loving husband and very supportive family which has made things much easier for me. I've also been fortunate to have a terrific family doctor and a pain specialist who is extremely knowledgeable and kind. I'm investigating photon therapy at the moment as the specialist thinks this might help me improve my mobility.

Cheers,
Catherine
miss irie is offline   Reply With QuoteReply With Quote
Old 10-08-2006, 10:40 AM #14
Sydney Sydney is offline
Member
 
Join Date: Sep 2006
Posts: 192
15 yr Member
Sydney Sydney is offline
Member
 
Join Date: Sep 2006
Posts: 192
15 yr Member
Default introduction - new member

Hi to all fellow RSD friends,
I have been reading on the old forum but was unable to participate as I really got confused trying to log on. We changed providers and everything got mixed up. Nevertheless, now I am able to finally post and reply.
I am so happy to have this forum to read daily. You are all to be admired for suffering through this miserable condition.
I have RSD, Fibromyalgia and Meralgia Paresthetica. The story of it all is too extensive to explain. It started as facial pain from a dental procedure which stretched my masseter muscles (1984). Over time it has spread throughout my entire body: face, neck, fulll back, arms, hands, knees, feet, etc. I am in constant pain almost everywhere and take no pain meds as they do not work. I tried about 25 or so at highest doses possible - including morphine, ketamine. I saw Dr. Schwartzman for possible IV Ketamine but was not a candidate as mine is so severe and had it for so long. Tried alternative therapies which only made me worse (acupuncture, cold laser, etc.) I can not have any invasive procedures(morphine pumps) as they trigger it off even worse. I was forced to retire from my job as a Reading Specialist(which I loved). Unable to walk any distance - just house to car -use carts in stores. Have a wonderful husband and adult mixed lab dog.
Today is a beautiful sunny day in PA. Oh how I wish I could get out and walk my dog and enjoy the day. Unfortunately the pain is so bad and my legs are just aching so much. I haven't walked even a block in almost 5 years since it hit my lower back and also got the Mer. Par. An epidural triggered it off ithe RSD and FM in my lower back in 2002. Spread everywhere after that.
Well - my hands are really aching now.
My best to all. I look forward to hearing from any fellow sufferers.
Sydney
Sydney is offline   Reply With QuoteReply With Quote
Old 10-08-2006, 03:34 PM #15
ATallOne's Avatar
ATallOne ATallOne is offline
Member
 
Join Date: Aug 2006
Posts: 202
15 yr Member
ATallOne ATallOne is offline
Member
ATallOne's Avatar
 
Join Date: Aug 2006
Posts: 202
15 yr Member
Default Sydney, Sydney, Sydney

Quote:
Originally Posted by Sydney View Post
You are all to be admired for suffering through this miserable condition.

Thank you for pointing out that we all should be admired, however it seems you too are carrying around only half the world's neurological problems on your own back. So let us take a moment to admire you!!!!. Also let us say welcome, take a load off your feet and join our humble little abode!!!! Chin Up!!!!

Mark
__________________

.


.
"MY MOMMA SAID THERE'D BE DAYS LIKE THIS!!!
.
ATallOne is offline   Reply With QuoteReply With Quote
Old 10-08-2006, 03:51 PM #16
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default hi there

I'm Mike (fmicheal) as before from Santa Monica CA.

I'm the father of two boys (13 and 9) and an attorney who hasn't been able to work since 1993, following a bilateral injury to my legs at the gym, two years earlier.

I just posted on long piece under a thread Roz put up, looking for me, but in a nutshell, I'm off to Johns Hopkins next week in an attempt to get a full neuro-immunological workup of whats going on with me. So we shall see.

In the meantine I have good days and bad days, and know that most of the time I am probably in less pain than most, but then there was last Friday when I felt like I was being pounded by a Catagory 5 hurricane. Funny how that works. It's like the old line from Monty Python:
NOBODY expects the Spanish Inquisition!
love to all,

Mike
fmichael is offline   Reply With QuoteReply With Quote
Old 10-08-2006, 04:04 PM #17
coleen h coleen h is offline
Junior Member
 
Join Date: Oct 2006
Location: Cottonwood, AZ
Posts: 9
15 yr Member
coleen h coleen h is offline
Junior Member
 
Join Date: Oct 2006
Location: Cottonwood, AZ
Posts: 9
15 yr Member
Default

Mike I'm afraid we must now poke you with the soft cushions. JK and good luck. Hopkins is the best I hear.

Thanks Joselita for pointing me in the right direction. I don't know what's been going on so forgive me while I get back up to speed. All I know is that forum has been down.

I'm doing great... well I guess you know me better than that. I am sweating out a breast biopsy. I'm sure it's nothing, but still, waiting on that phone call is no fun.

Other than that life is great. My pump is still working well.

Glad I found you all. I'll have to catch up on my reading

Love to all
Coleen H
coleen h is offline   Reply With QuoteReply With Quote
Old 10-10-2006, 01:34 AM #18
Coconut Coyote's Avatar
Coconut Coyote Coconut Coyote is offline
New Member
 
Join Date: Oct 2006
Location: Surface of the Sun
Posts: 5
15 yr Member
Coconut Coyote Coconut Coyote is offline
New Member
Coconut Coyote's Avatar
 
Join Date: Oct 2006
Location: Surface of the Sun
Posts: 5
15 yr Member
Default

Sure is good to be back. My story: January of 2001, had a snowboarding accident and fractured L1, L2, L4, L5. In Oct. 2003, had cervical spinal fusion C5-C6 with graft and hardware. About six months after surgery, C4 and C7 started slipping and became unstable. Doctors did not want to do multi-level fusion so we tried some comfort measures, a series of epidurals and facet injections with no relief. In September of 2005, had bilateral C4-C5Radio-frequency Ablation and within eight hours of procedure, ended up in hospital with RSD in neck, shoulder, upper left arm, and back. About two months ago it spread to my mouth, including lips, tongue and teeth. For over twenty years worked as a RN in Neonatal ICU. I have been disabled since Sept of 2005. raising 5 children on my own. Hanging in there as best I can. It is so good to have our RSD family getting back together, what great support. Take Care Darla
Coconut Coyote is offline   Reply With QuoteReply With Quote
Old 10-11-2006, 10:17 PM #19
coleen h coleen h is offline
Junior Member
 
Join Date: Oct 2006
Location: Cottonwood, AZ
Posts: 9
15 yr Member
coleen h coleen h is offline
Junior Member
 
Join Date: Oct 2006
Location: Cottonwood, AZ
Posts: 9
15 yr Member
Default Benign!

Got the lab results and the breast biopsy is benign. We are very relieved. Have a great day!!
Coleen
coleen h is offline   Reply With QuoteReply With Quote
Old 10-12-2006, 04:45 AM #20
artist
Guest
 
Posts: n/a
artist
Guest
 
Posts: n/a
Default

That is great news, Coleen. What a weight off your mind. Been through the same thing myself - not fun, that waiting on results.
Take care and rest up if you can,
all the best
  Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
roll call coyote Alcoholism, Addiction and Recovery 1 10-12-2006 04:28 PM
roll call 10/03/06... sallyb Fibromyalgia and Chronic Fatigue 1 10-03-2006 04:28 PM
Where's everyone?Roll Call for 9/21/06.. CoolAngel26 Headache 1 09-21-2006 12:02 PM
roll call Austinsmom Hydrocephalus 35 09-08-2006 08:46 PM
Roll Call???? Atrayou Alcoholism, Addiction and Recovery 6 08-31-2006 10:59 PM


All times are GMT -5. The time now is 06:26 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.