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 02-07-2010, 02:08 AM #1
cindi1965's Avatar
cindi1965 cindi1965 is offline
Member
 
Join Date: Jul 2009
Location: West Virginia
Posts: 375
10 yr Member
cindi1965 cindi1965 is offline
Member
cindi1965's Avatar
 
Join Date: Jul 2009
Location: West Virginia
Posts: 375
10 yr Member
Default FLARE! need I say more?

Getting ready to go into Flare mode and I need your prayers. The snowstorm, and all the excitement of having a birthday and finding out that I am going to be a grandma has just started me into a flare....I am worried about getting my refills this week because there is another snow storm on the way AND we are in the single digits...I hardly ever whine on here, but I know you all understand...Love to you all and thank you for all the support..
cindi1965 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Kakimbo (02-11-2010), loretta (02-11-2010), SandyS (02-11-2010)

advertisement
Old 02-07-2010, 08:12 AM #2
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
Heart

Quote:
Originally Posted by cindi1965 View Post
Getting ready to go into Flare mode and I need your prayers. The snowstorm, and all the excitement of having a birthday and finding out that I am going to be a grandma has just started me into a flare....I am worried about getting my refills this week because there is another snow storm on the way AND we are in the single digits...I hardly ever whine on here, but I know you all understand...Love to you all and thank you for all the support..
Have I mentioned you can call me...KWS~!!! The middle initial is stand for whine!! Honestly..i am so sorry for you rush and flare..Try to relax and read, listen to music and mediate anything to counteract your anious feeling... avoid those how make your skin crawl..most of all talk to us... and we'll get thru it together!!!

SO sorry.. hang in there!!

Love, KS..
keep smilin is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (02-08-2010), Kakimbo (02-11-2010), loretta (02-11-2010)
Old 02-08-2010, 01:04 AM #3
bobber bobber is offline
Member
 
Join Date: Jun 2009
Posts: 497
10 yr Member
bobber bobber is offline
Member
 
Join Date: Jun 2009
Posts: 497
10 yr Member
Default

Cindi
I will cer tainly lift you up in prayer,,Im sorry to hear about your flare,,im in a deep one too,as well as quite a few others who are on this site that i've talked to lately,,,May the lord bless us all and bring healing and peace to us,,,,,bobber,,,,,,,p.s ,,,,,my mom lives in W.Va,,and they are getting hammered with snow for the last couple of days,,,,Stay warm,stress free,and in prayer,,,,your buddy,bobber
bobber is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (02-08-2010), Kakimbo (02-11-2010), loretta (02-11-2010), SandyS (02-11-2010)
Old 02-08-2010, 01:13 AM #4
hannah1234 hannah1234 is offline
Member
 
Join Date: Jul 2009
Location: Los Angeles, California
Posts: 280
10 yr Member
hannah1234 hannah1234 is offline
Member
 
Join Date: Jul 2009
Location: Los Angeles, California
Posts: 280
10 yr Member
Default

I am so sorry. We all feel your pain. I pray the Lord comforts you during this time. Drink a cup of warm (decaf) tea, and listen to some music soothing to you. I found this website... lastfm.com if you put in 'sleep music' it comes up a sleep channel and it has earth sounds.. it is very very calming. I was very suprised. And you can type in any other artists you like. Music has always been calming to my ears, but make sure your body responds in a calming way, not all 'calming' sounds or cds are calming for everyone!!!
hannah1234 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (02-08-2010), Kakimbo (02-11-2010), loretta (02-11-2010), SandyS (02-11-2010)
Old 02-10-2010, 05:39 PM #5
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
Default

Quote:
Originally Posted by cindi1965 View Post
Getting ready to go into Flare mode and I need your prayers. The snowstorm, and all the excitement of having a birthday and finding out that I am going to be a grandma has just started me into a flare....I am worried about getting my refills this week because there is another snow storm on the way AND we are in the single digits...I hardly ever whine on here, but I know you all understand...Love to you all and thank you for all the support..
Hi Cindi, Wow you have been snowed on and snowed on again. It only looks beautiful if you don't have to go to work in it, if you still have electricity, have food stocked, lots of games for the kids, don't have RSD,
rent some funny movies for the kids. turn the fireplace on and have a little Dom, we don't have RSD so we can have it. I would like some of our vacations that I don't have in an album yet, and finish that project-it would be so much fun. Have Michael bluble on and other favorite CD's.
Now reality,could you call in for refill and it would be ready when someone is able to get out? Does the Pharmacy have a delivery service to patients.
Are you presently taking an anti-anxiety med? They work well on the sympathetic nervous system thus lowering pain level. The anti-depressant med like cymbalta does the same-lower anxiety thus lowers pain meds. Some towns have Pick Up and Delivery Service. That would be in the yellow pages.
Take care, I'm staying in, I'm in a flare too Cindi. I have a lesion on the back of my leg, last year I had two and they got infected, bad news. I'm also have hot spots.
I am totally mobile, except left hand got delayed in treatment so have 50% range of motion. But I can type, cut my own food. I'm grateful. I have terrible headaches. My plan is to have HBOT this summer. My Dr. just opened two clinics that each have a HBOT. So saving up for it now.
Hope you get thru this mixed up weather with as little pain as possible.Take care, loretta with soft hugs
loretta is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (02-12-2010), Kakimbo (02-11-2010), SandyS (02-11-2010)
Old 02-10-2010, 07:59 PM #6
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
Heart I feel silly!!!!!

Quote:
Originally Posted by loretta View Post
Hi Cindi, Wow you have been snowed on and snowed on again. It only looks beautiful if you don't have to go to work in it, if you still have electricity, have food stocked, lots of games for the kids, don't have RSD,
rent some funny movies for the kids. turn the fireplace on and have a little Dom, we don't have RSD so we can have it. I would like some of our vacations that I don't have in an album yet, and finish that project-it would be so much fun. Have Michael bluble on and other favorite CD's.
Now reality,could you call in for refill and it would be ready when someone is able to get out? Does the Pharmacy have a delivery service to patients.
Are you presently taking an anti-anxiety med? They work well on the sympathetic nervous system thus lowering pain level. The anti-depressant med like cymbalta does the same-lower anxiety thus lowers pain meds. Some towns have Pick Up and Delivery Service. That would be in the yellow pages.
Take care, I'm staying in, I'm in a flare too Cindi. I have a lesion on the back of my leg, last year I had two and they got infected, bad news. I'm also have hot spots.
I am totally mobile, except left hand got delayed in treatment so have 50% range of motion. But I can type, cut my own food. I'm grateful. I have terrible headaches. My plan is to have HBOT this summer. My Dr. just opened two clinics that each have a HBOT. So saving up for it now.
Hope you get thru this mixed up weather with as little pain as possible.Take care, loretta with soft hugs
I sure feel really silly asking this..but can someone explain to me exactly what a flare feels like????????????? I am trying to pin point what it may be but my RSD pain is constant and continual..same heightened mean pain with the hot/cold temperatures never ending..Ole' KS need some straightening out.....I am RSD totaled!!

luv, Kathy
keep smilin is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (02-11-2010), Kakimbo (02-11-2010), loretta (02-11-2010), SandyS (02-11-2010)
Old 02-11-2010, 12:27 AM #7
cindi1965's Avatar
cindi1965 cindi1965 is offline
Member
 
Join Date: Jul 2009
Location: West Virginia
Posts: 375
10 yr Member
cindi1965 cindi1965 is offline
Member
cindi1965's Avatar
 
Join Date: Jul 2009
Location: West Virginia
Posts: 375
10 yr Member
Default

Quote:
Originally Posted by keep smilin View Post
I sure feel really silly asking this..but can someone explain to me exactly what a flare feels like????????????? I am trying to pin point what it may be but my RSD pain is constant and continual..same heightened mean pain with the hot/cold temperatures never ending..Ole' KS need some straightening out.....I am RSD totaled!!

luv, Kathy
Well, it pretty much, to me feels like, all the little symptoms of RSD that you have magnified by about 100% plus...I stiffen up...I hurt, the blood pressure, goes up, I burn from the inside out and of course my main source of injury goes nuts...stinging. burning, pain shooting through my leg into my thigh and then I get deep bone and muscle ache...during this time the heating pad is my very best friend....these are just some of the symptoms that I have, but they have been know to change...I journal a lot, so I can go back and see what has cause a major flare....sometimes when I get really excited and happy, I go into "mini" flare mode where everything burns and hurts until I calm myself down....hope this helps
cindi1965 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Kakimbo (02-11-2010), SandyS (02-11-2010)
Old 02-11-2010, 10:09 AM #8
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
Thumbs Up Thank you...Cindi..

Quote:
Originally Posted by cindi1965 View Post
Well, it pretty much, to me feels like, all the little symptoms of RSD that you have magnified by about 100% plus...I stiffen up...I hurt, the blood pressure, goes up, I burn from the inside out and of course my main source of injury goes nuts...stinging. burning, pain shooting through my leg into my thigh and then I get deep bone and muscle ache...during this time the heating pad is my very best friend....these are just some of the symptoms that I have, but they have been know to change...I journal a lot, so I can go back and see what has cause a major flare....sometimes when I get really excited and happy, I go into "mini" flare mode where everything burns and hurts until I calm myself down....hope this helps
Okay..loud and clear..you did great clearifying what a "flare" feel like.. Thank you!! And please..please..not to minimize anyone's pain here but I wonder if that is why my Dr. has classified my RSD as so aggressive RSD and why I didn't know exactly what a flare is because... I always have to burning..deep bone pain...stabbling knife pain to the point of pouring sweat all over my body cuz it hurts so bad... I am a nut..so stubborn not letting it break me down.... not being able to take any meds.. makes it worse as I always grit my teeth and try to stay in a good mood... ain't easy!!!

I am sorry for your pain and I hope today you don't suffer any flares..or for a very long time for that matter!!!!

Hugz, k
keep smilin is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (02-12-2010), Kakimbo (02-11-2010), SandyS (02-11-2010)
Old 02-11-2010, 10:50 AM #9
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
Heart

Kathy - it sounds like you live in a flare - I'm so, so sorry.

What is the date of your appt with Dr. S? Hopefully it is less than one month away, so you are counting the days. Is this your first appt with him? Or are you already lined up for treatment? Do you know that you are going in for a certain ketamine treatment when you go to Drexel in March? Have you tried any other treatments so far - like blocks or lidocaine infusions? How did they work? How about PT or OT to keep things moving?

There is a lot of evidence that suggests that aggressive PT can help RSD. My RSD spread to my right leg last year, but I have never stopped moving (I walk as many miles a day as the cold weather permits) and it remains mobile (but really painful). Of course, my original injury wasn't to one of my feet, so I am not walking on a neuroma like some other RSDers would have to do in order to stay mobile - I wouldn't want to say that I could do something as incredibly painful as that might be...however, the motto is "use it or lose it."

One thing that I have a real problem with because of the chronic pain is my blood pressure. Have you had yours checked? In the absence of meds yours could be out of control because of your pain - just be careful.

Have a good day - the sun is finally shining..hopefully my head will stop throbbing soon..hopefully...

Peace, Sandy
SandyRI is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (02-12-2010), SandyS (02-11-2010)
Old 02-11-2010, 03:40 PM #10
Kakimbo Kakimbo is offline
Member
 
Join Date: Sep 2009
Location: Galena, MD
Posts: 280
10 yr Member
Kakimbo Kakimbo is offline
Member
 
Join Date: Sep 2009
Location: Galena, MD
Posts: 280
10 yr Member
Default

Hi KS!

I feel exactly like you and many of us feel! I live in Maryland and we just got another blizzard yesterday. It's snowed more this winter than in the past ten years combined! Set new record for all-time highest amount of snow...ever! AND, lucky us, another storm coming next Monday!!! AHHHHHHHHH!! (And I LOVE snow!).

I missed my pain doctor's appt., cuz they got hammered too (Philadelphia) and I will run out of pain meds, therefore I will have to resort to my vicoden, which I am allergic to and make me vomit. Gotta pick the lesser of two evils; agonizing pain or puking! (sorry to be so graphic.)

As far as pain goes, for me anyway...Deep burning in my RSD leg, agonizing muscle spasms, shooting pain, bouts of sweating/shivering, one inch of atrophy, extreme burning (like a jellyfish stung me), piercing jabbing jolts of fire. 24 hour a day, 7 days a week. My husband says that I even cry in my sleep.

I am very sorry that you are going through this. BUT, everyone here is very kind and caring and sympathetic (get the joke?). I have made many wonderful friends here and so will you. One friend has not heard from me in a while (bad flare from snow) and PM'd me just to check on me! Now that's friendship!

Oh, and HAPPY BIRTHDAY! and congrats on being a Grandma!
__________________

.

.
Kakimbo is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (02-12-2010), SandyS (02-11-2010)
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
How far does a flare go? 4cordelia Multiple Sclerosis 4 09-10-2010 05:48 PM
pseudo flare while still in a flare? legzzalot Multiple Sclerosis 9 09-29-2009 05:58 AM
First Flare Catch Multiple Sclerosis 5 02-06-2008 02:22 PM
My first flare or? Catch Multiple Sclerosis 6 02-05-2008 01:55 PM
Flare! coyote Fibromyalgia and Chronic Fatigue 5 09-18-2006 08:40 PM


All times are GMT -5. The time now is 04:23 AM.

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.