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 12-09-2013, 10:14 PM #11
moosey2me's Avatar
moosey2me moosey2me is offline
Member
 
Join Date: Nov 2013
Location: Gloversville NY
Posts: 252
10 yr Member
moosey2me moosey2me is offline
Member
moosey2me's Avatar
 
Join Date: Nov 2013
Location: Gloversville NY
Posts: 252
10 yr Member
Default Caring PEOPLE

As I read these post,one thing truly comes to mind..We all care..Rsd is not easy to deal with.I know I am working towards 4 years in Jan..I was hoping to feel better by now.I was a person who walked twice a day with my dog,now I can barely walk.I was using crutches ,and wheelchair in the beginning all the time.So I am greatful that I can walk without ,short areas,but if I feel unstable I use a cane or wheelchair..I am thinking about getting adult walker with a seat.So I can take a brake...I also have a electric scooter,that I use a lot while camping.I just hate the thought of depending on a walker..Makes me feel old..I am 48,and feel younger on most days ,except when I get a gotcha moment.. I have had a lot of meds. too.either they bother my stomach or reaction..I have not found one yet that truly helps.Every day there is pain.I cannot remember the last time I was pain free..That is really scarery. But I never give up..Waiting for that someday..
Do not ever forget we are here for one another.I know I hate it when someone else gets this,but I feel worse knowing it is a child..or young teen..
You will learn a lot here.RSD issues,,like muscle jerks and headaches,sweats,chills,burning,pain,tired,sad,alo ne...but then again we have each another here.. Glad you joined..Best wishes
moosey2me is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
crpsage16:( (12-10-2013), RSD ME (12-09-2013)

advertisement
Old 12-09-2013, 11:35 PM #12
Lottie Lottie is offline
Member
 
Join Date: Nov 2013
Location: United States
Posts: 363
10 yr Member
Lottie Lottie is offline
Member
 
Join Date: Nov 2013
Location: United States
Posts: 363
10 yr Member
Default

Hi Blake, welcome! Sorry you are hurting. You've come to the right place. :-)
I do not have skin sensitivities either. I get cold / hot sensations but not super sensitive like some folks. You mentioned swimming ......keep moving in the pool! It has done wonders for me!fc
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
Lottie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
crpsage16:( (12-10-2013), moosey2me (12-10-2013)
Old 12-10-2013, 12:31 AM #13
crpsage16:( crpsage16:( is offline
Junior Member
 
Join Date: Dec 2013
Posts: 17
10 yr Member
crpsage16:( crpsage16:( is offline
Junior Member
 
Join Date: Dec 2013
Posts: 17
10 yr Member
Default

Hi lottie and moosey, thanks for the responses. I'm sorry you're feeling old, moosey. I know I feel 95 each and every day, and I'm 16! I hope your journey ends soon as I hope everyone elses does with this terrible pain. Lottie, it's interesting that you swim. It certainly helps me a lot with my temperature issues/body temp issues. I will continue to swim as it is fun and beneficial!
crpsage16:( is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
moosey2me (12-10-2013)
Old 12-10-2013, 12:48 AM #14
AZ-Di's Avatar
AZ-Di AZ-Di is offline
Member
 
Join Date: Mar 2013
Location: Arizona
Posts: 453
10 yr Member
AZ-Di AZ-Di is offline
Member
AZ-Di's Avatar
 
Join Date: Mar 2013
Location: Arizona
Posts: 453
10 yr Member
Default

Hi & Welcome but rather you did not have need to be here.

Everything I've read is that there is no "cure" for this, there isn't even a definate plan of treatment. such as, Kidney disorders have dialysis, Crohn's disease has Humira, Cancer treatments are Chemo and radiation and all sorts of definative testing.
Everything for this is pretty much an individualized stab in the dark. Most drugs prescribed are "off label" originally made for another disorder. Treatments are the same too.
However, it's pretty consistent that youth is on your side. It's far more prevalent that at least remission is FAR MORE likely if you're very young. Usually under age 25 or so. My P.M. (She's awesome) has CRPS & is in remission but was I think she was 17 when they got her into remission & she has stayed there!!! Thank heavens because that got her thru university and Med. school and now a great Pain Mgt. Dr.
Keep us posted on your happenings.
__________________
RSD/CRPS and contracture of left hand and arm after surgery for broken wrist.
AZ-Di is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
moosey2me (12-10-2013), RSD ME (12-10-2013)
Old 12-10-2013, 03:38 AM #15
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Default

Quote:
Originally Posted by crpsage16:( View Post
Hi lottie and moosey, thanks for the responses. I'm sorry you're feeling old, moosey. I know I feel 95 each and every day, and I'm 16! I hope your journey ends soon as I hope everyone elses does with this terrible pain. Lottie, it's interesting that you swim. It certainly helps me a lot with my temperature issues/body temp issues. I will continue to swim as it is fun and beneficial!
Hi crpsage16, your comment made me smile in that ironic kind of way.... I feel about a hundred myself this morning lol Every single joint seems to be protesting about even having to slide out of bed. I make a point of getting up, showering and dressing every day because I know if I start not getting up in the morning, I'll end up a bed-bound hermit, but today bed never seemed so appealing.....what with the cold grey skies, and the knowledge that I'm not working until this afternoon!!

I used to love swimming, but now it's that horrible cold when I get out of the water that stops me - it slices through my left side like knives and i totally tighten up, which undoes any good from the swimming : After Christmas I'm going to look at a private hydro pool near me and see if that's warm enough for me to try. Better make sure I'm earning enough...

Take care guys and have a better day today

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
Brambledog is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
moosey2me (12-10-2013), RSD ME (12-10-2013)
Old 12-10-2013, 04:32 PM #16
crpsage16:( crpsage16:( is offline
Junior Member
 
Join Date: Dec 2013
Posts: 17
10 yr Member
crpsage16:( crpsage16:( is offline
Junior Member
 
Join Date: Dec 2013
Posts: 17
10 yr Member
Default

Haha, Bramble. It's funny because today I didn't get out of bed until 2 pm because I was feeling the same way. Here's a reccomendation for swimming. There are 24 hour fitnesses, and you can go anytime you want. They have a hot tub, a sauna, and a heated pool, so you'll never be cold again!
crpsage16:( is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brambledog (12-10-2013)
Old 12-10-2013, 11:35 PM #17
Lottie Lottie is offline
Member
 
Join Date: Nov 2013
Location: United States
Posts: 363
10 yr Member
Lottie Lottie is offline
Member
 
Join Date: Nov 2013
Location: United States
Posts: 363
10 yr Member
Default

I am blessed to have access to a warm water (91 degrees F) indoor pool. I can do my own thing or join in a "arthritis class". It is wonderful! Being non-weight bearing in the water eases my painful leg and foot some. I can also do some aerobic exercise which has become very challenging on land. I used to be an avid walker, I miss that so much. How are you doing blake?
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
Lottie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brambledog (12-11-2013)
Old 12-11-2013, 11:41 AM #18
crpsage16:( crpsage16:( is offline
Junior Member
 
Join Date: Dec 2013
Posts: 17
10 yr Member
crpsage16:( crpsage16:( is offline
Junior Member
 
Join Date: Dec 2013
Posts: 17
10 yr Member
Default

Hi Lottie, I'm actually doing ok. Rather than the pain, I'm now swimming every day, which is nice, and it eases my pain alittle bit. Pool is the way to go with this if you've tried everything else for relief in my opinion . + its fun
crpsage16:( is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brambledog (12-11-2013)
Old 12-11-2013, 11:45 AM #19
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
Default

Hi Blake, I'm glad you're swimming and doing better. My thoughts are with you and I hope you have a very happy holiday season with your family. Take care.
__________________
RSD ME
.
RSD ME is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
crpsage16:( (12-11-2013)
Old 12-11-2013, 11:21 PM #20
Lottie Lottie is offline
Member
 
Join Date: Nov 2013
Location: United States
Posts: 363
10 yr Member
Lottie Lottie is offline
Member
 
Join Date: Nov 2013
Location: United States
Posts: 363
10 yr Member
Default

Hi blake! That is awesome good for you! You sound like you are coping better today. How are you doing with your friends?
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
Lottie is offline   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
16 year old with crps :( crpsage16:( New Member Introductions 2 12-08-2013 11:14 PM
20 year old with CRPS 310Girl New Member Introductions 2 09-14-2011 12:14 AM
If Only it were THAT Easy!- A 3 year old's view of CRPS and how I shoul deal with it! Cake Reflex Sympathetic Dystrophy (RSD and CRPS) 8 10-25-2009 11:08 PM


All times are GMT -5. The time now is 01:45 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.