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 01-04-2007, 02:19 PM #1
Denise G Denise G is offline
Junior Member
 
Join Date: Jan 2007
Location: Palm Springs, CA
Posts: 66
15 yr Member
Denise G Denise G is offline
Junior Member
 
Join Date: Jan 2007
Location: Palm Springs, CA
Posts: 66
15 yr Member
Default Has anyone experienced this?

Hi, I'm new today! I've had CRPS II in my right hand and arm for 5 1/2 years. It spread up to my neck and into left hand also, but not as severe. Haven't been able to work in over 3 years. Didn't get diagnosed and treated for 3 years. Had several Stellate Ganglion Blocks that REALLY helped calm down my pain for a couple of years, as long as I limited my aggravating activities etc. Then, I broke a finger on my worse hand (right) early August and I went into a MAJOR flare in both arms. Lyrica has been working great, but I nearly had a car accident due to not being able to "think straight".

I cut back on the Lyrica as soon as flare began to let up in November. Now I'm doing better than I have in a long time! Which is great, EXCEPT I'm finally being sent to a Neurologist (thru work comp) tomorrow, and it seems I have very little symptoms!

Has anyone else gone into some sort of a "spontaneos remission" for a little while, then get bad again?

Thanks for any input or suggestions for this appointment!

Denise
Denise G is offline   Reply With QuoteReply With Quote

advertisement
Old 01-04-2007, 02:33 PM #2
VWBeetle VWBeetle is offline
Junior Member
 
Join Date: Jan 2007
Posts: 7
15 yr Member
VWBeetle VWBeetle is offline
Junior Member
 
Join Date: Jan 2007
Posts: 7
15 yr Member
Default

Remission ? Nope , not during the 4 years I have had RSD . I have never read about a total remission either but if so , sounds hopefull .

Good luck to you .
VWBeetle is offline   Reply With QuoteReply With Quote
Old 01-04-2007, 03:04 PM #3
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,688
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,688
15 yr Member
Default

Hello to both of you,

I don't have RSD but just wanted to welcome you to the forum.

and ask a question-
Denise-
Is the work comp for the RSD only?
or did you have a injury at work that brought it on?

we also have a work comp forum if that might be of help.
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 01-04-2007, 03:09 PM #4
emilys gramma's Avatar
emilys gramma emilys gramma is offline
Member
 
Join Date: Sep 2006
Location: michigan/ florida
Posts: 231
15 yr Member
emilys gramma emilys gramma is offline
Member
emilys gramma's Avatar
 
Join Date: Sep 2006
Location: michigan/ florida
Posts: 231
15 yr Member
Default first off, welcome......

my husband and i both have rsd.........he was diagnosed in 2001, and had been doing fairly well.....been able to continue working, etc.........until......................march 24 2006 he got hurt at work yet again, this time his left rotator......he had surgery, and whammmmmmmmmmm he has been down for the count since..............his left side is really bad........ he has had some sgbs, but they only gave short relief...........he now has a frozen shoulder, and his hand is starting to claw..............pain is through the roof...........
so to answer your question, yes, .......he is on lyrica and norco, and they are doing a port in his neck for continual coverage jan. 24.
good luck to you, and again, welcome.
ps. i was diagnosed in 2002 and have my pain at a tolerable stage, thank goodness................the fibro is the more painful part for me...............
__________________

.
claudia
.
emilys gramma is offline   Reply With QuoteReply With Quote
Old 01-04-2007, 04:42 PM #5
dreambeliever128's Avatar
dreambeliever128 dreambeliever128 is offline
Magnate
 
Join Date: Nov 2006
Posts: 2,088
15 yr Member
dreambeliever128 dreambeliever128 is offline
Magnate
dreambeliever128's Avatar
 
Join Date: Nov 2006
Posts: 2,088
15 yr Member
Default

Through lots of work I am in remission in my arms and hands. The only time I see the RSD flare up is when the barometer changes and then no meds on earth helps with the pain.

I have had blocks that worked wonders. If the blocks work the first time then use them again. I'm on a minimal Methadone dosage. I have to go up on it when mine is worst but it still doesn't help at that time.

I am dealing with my fingers spasming up now and I just took pictures of them awhile ago. I want to show it to my hand surgeon. I honestly don't know it it's the RSD or a pinched nerve somewhere. It just started back up about a month ago after not dealing with it for about 5 years. I'm wondering if what Claudia is talking about her husbands hand is going on with mine.

I do think we have had one or two on here before that said they are in complete remission. Don't remember who but some of the others might remember.

Welcome to the board.
Ada
dreambeliever128 is offline   Reply With QuoteReply With Quote
Old 01-04-2007, 07:30 PM #6
artist
Guest
 
Posts: n/a
artist
Guest
 
Posts: n/a
Default

Hi and welcome, Denise,

Yeah, we've had a very few people on this and the previous board who have had a remission; thing is, once people have gone into remission they aren't usually here to tell us about it (fair enough, if you can just get on with life, good on you!) but sometimes they do. Maybe someone will pop in; and sometimes, like Lisashea, they found it was a pinched nerve instead, or something mechanical (and so fixable) all along... seems it can happen, just doesn't very often.

Hope we can help you some, thanks for sharing your story with us,
all the best
  Reply With QuoteReply With Quote
Old 01-04-2007, 08:17 PM #7
Denise G Denise G is offline
Junior Member
 
Join Date: Jan 2007
Location: Palm Springs, CA
Posts: 66
15 yr Member
Denise G Denise G is offline
Junior Member
 
Join Date: Jan 2007
Location: Palm Springs, CA
Posts: 66
15 yr Member
Talking Like so many others, I've got multiple issues

Quote:
Originally Posted by jo55 View Post
Hello to both of you,

I don't have RSD but just wanted to welcome you to the forum.

and ask a question-
Denise-
Is the work comp for the RSD only?
or did you have a injury at work that brought it on?

we also have a work comp forum if that might be of help.
Hi jo55 (Hope I'm doing this right!)

When I was injured at work it caused a RCT, stretched/torn ulnar nerve, severe sprain of my wrist (all on the right side), and a slight buldging disc in my neck which is causing neck pain and sometimes SEVERE headaches. No one diagnosed me for so long. Then, my left hand and arm began to hurt and turn colors also and I was told I developed CRPS II (and possibly TOS).

I also would like to know if anyone else has worse pain at night on a regular basis. I mean, the very WORST thing for me is to have cool air blow on my right arm or neck anytime day or night. I usually go into horrible pain then. But then, even on days when my pain is "calmer" and bearable, as soon as I get into bed (almost) the pain in both arms and hands worsens. Maybe this is due to the RCT on the right shoulder and now I'm having problems with left shoulder too since I lift everything and drive with my left hand.

No doctor answers me when I ask if this is the RSD or not.

I'm so glad to fing this site! I haven't had ANYONE who has this to talk to or ask questions to "compare".
Denise G is offline   Reply With QuoteReply With Quote
Old 01-04-2007, 08:21 PM #8
Denise G Denise G is offline
Junior Member
 
Join Date: Jan 2007
Location: Palm Springs, CA
Posts: 66
15 yr Member
Denise G Denise G is offline
Junior Member
 
Join Date: Jan 2007
Location: Palm Springs, CA
Posts: 66
15 yr Member
Default

So you do have pain when the barometer changes??!! I live in Palm Springs and have been thinking about moving to Colorado where I have some family who can help me. Maybe a cold climate isn't a good idea!

But I have found that air conditioning causes me MUCH pain, but when I'm wearing a jacket in cold weather I'm OK.

How long does it take you to recover from a "barometer change"?
Denise G is offline   Reply With QuoteReply With Quote
Old 01-04-2007, 09:12 PM #9
HeatherAnne's Avatar
HeatherAnne HeatherAnne is offline
Junior Member
 
Join Date: Dec 2006
Posts: 38
15 yr Member
HeatherAnne HeatherAnne is offline
Junior Member
HeatherAnne's Avatar
 
Join Date: Dec 2006
Posts: 38
15 yr Member
Default

Quote:
Originally Posted by Denise G View Post
Lyrica has been working great, but I nearly had a car accident due to not being able to "think straight".

I cut back on the Lyrica as soon as flare began to let up in November. Now I'm doing better than I have in a long time! Which is great, EXCEPT I'm finally being sent to a Neurologist (thru work comp) tomorrow, and it seems I have very little symptoms!

Has anyone else gone into some sort of a "spontaneos remission" for a little while, then get bad again?
Hello there! I definitely have felt the great effect of lyrica althoguh you are right when sometimes it makes you feel a little funny. I did the same thing in October. I was on lyrica three times a day and was doing pretty well so I decided to go off of it. I was doing really well off of it until about early December when it started getting really bad again. Now I went back on lyrica and starting my little "on and off" lyrica cycle I seem to be on. Since I got off neurontin and had such a horrible experience with that I decided that I would not be on one medication long term jsut because of the bad side effects that could happen. Since Lyrica really hasn't been out long enough to know the long term side effects my doctor advised me to use it for a few months at a time and then subside it and when I start feeling worse again to start it back up.

I remember my first neurologist saying to me that CHILDREN have a very high chance of recovery completely. And there 3 people that I know personally who have had rsd. All three had it when they were teenagers like me. 2 of which are 100% better, no pain like 10-15 years (they are grown up now). The third has a SCS implanted and then there is me who still isn't better either but is going the non-scs route.

I don't know, I have heard though a lot that if caught early, remission or complete recovery is possible. BUT in most of our cases the doctors were too stupid to catch it so we are all still in pain .....
((hugs!!))
__________________
Heather

I found I could say things with color and shapes
that I couldn't say any other way...
things I had no words for
.-Georgia O'Keefe
HeatherAnne is offline   Reply With QuoteReply With Quote
Old 01-06-2007, 10:40 AM #10
lisashea lisashea is offline
Junior Member
 
Join Date: Oct 2006
Location: Mansfield, MA
Posts: 45
15 yr Member
lisashea lisashea is offline
Junior Member
 
Join Date: Oct 2006
Location: Mansfield, MA
Posts: 45
15 yr Member
Default it's me lisashea in total remission

Quote:
Originally Posted by VWBeetle View Post
Remission ? Nope , not during the 4 years I have had RSD . I have never read about a total remission either but if so , sounds hopefull .

Good luck to you .
Hi,
Just wanted to drop in and say that I do know of people in total remission( me and 2 others who used to come to the braintalk forum). I had pinched nerves in my ankle and once my chiropractor made some adjustments to my bones and I did 2 yrs of intense rehab, I am back at work fulltime and feel incredible.( to me, incredible means no rsd pain or symptoms)

The other people I mentioned got better using HBOT. One was a dancer. I think her name was DancerJen. She was young, in her 20's, and I think was from California. She used to drop in now and then.

Then there was a gentleman who did HBOT in Florida twice. I met him in person a few years ago and he was back at work and functioning very well.

As for remission for short peroids of time, what I can tell you is:
1. I got remissions with HBOT and accupuncture.
2. I know someone whose pain went away from a Laser therapy earlier this year. She had about 15 treatments and felt great for the first time in years. No pain. Then the sales rep took the machine out of her doctors office and disappeared! Her pain is back and her doctor is trying to buy a machine so she can use it again. I think it's called "cold laser".
3. I know another person who I did HBOT with that has had periodic remissions since 2002. It seems to be a rollercoaster ride for her but after 6 yrs of being diagnosed with RSD she is working partime and off of all meds.

I also have just recently been connecting with someone in Canada who had surgery to un-entrap some nerves in her ankle. Her RSD pain is now gone but she is just beginning the rehab process and it is very difficult. I found tons of studies on the internet that talk about nerve entrpament being the cause of rsd symtpoms so I know there are many, many people who experience what I did or the studies wouldn't be around.

So... there are people out there who have had remissions and total remissions. Maybe few and far between but if I can be one of them then SO CAN YOU!!!

My advice is to keep searching for the answers to your particular problem. We are all different so each of us may have there own individual solution to the same symptoms.

NEVER GIVE UP HOPE!!
Peace,
Lisa
lisashea is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

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
has anyone experienced this or just me? ianj Hydrocephalus 0 10-30-2006 01:03 AM


All times are GMT -5. The time now is 06:12 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.