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 01-26-2014, 12:19 PM #21
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 ~Sage~ View Post
Bram, a question - might you also have Raynauds? I've had the Raynauds Disease since childhood and I know the combo of that with the RSD really complicates things.
That's a tricky one Sage... From what I've read, Raynauds phenomenon can occur within CRPS, as well as as a separate disease of its own. Something to do with whether it's primary or secondary Raynauds. I'm pretty sure I don't have Raynauds, the only similarity really is the cold blueness of my skin sometimes, but that is a definite part of the CRPS symptoms. I don't get the other Raynauds symptoms as far as I know!

But thanks for asking the question It's always good to explore a different idea with this. You never know when something just might make a difference...

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

advertisement
Old 01-26-2014, 12:33 PM #22
Nanc's Avatar
Nanc Nanc is offline
Member
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Nanc Nanc is offline
Member
Nanc's Avatar
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Default

Bram, just wanted to let you know that I have been thinking about you and hope you are on your way out of this flare. My post has to be short, not having a great day myself and we are gonna attempt going out today. Visit in-laws and go the the store

Take care,
Nanc
Nanc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brambledog (01-26-2014)
Old 01-26-2014, 04:17 PM #23
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

Thanks Nanc

I'm sorry you're having a rough time of it too, it's horrible when you've got to get ready and go out...when all you really want to do is crawl into bed and sleep (if at all possible)... Hope everything goes well and you feel ok with it all.

Just got back from the last outing today. I'm shattered now! My feet are burning like crazy, my back is making me walk like a bow-legged old sailor and my knees are fat balloons. Glad to be back on my sofa! Had a weird thing just now - my finger on my right hand went all hot and fat, and I washed my hands after going in the bathroom. I happened to look at my hand while washing, and my whole hand was wet, finger pads and all - except the one that was hot. The pad area to the second knuckle halfway down was completely dry. It looked so odd, the water just wouldn't stick!

Take care everyone and I hope you all sleep well tonight. I'm feeling a little more myself today, despite the obvious stuff, so I'm hoping the worst is over. Thank you all over again lol

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:
AZ-Di (01-28-2014), moosey2me (02-09-2014), Nanc (01-26-2014)
Old 01-26-2014, 07:54 PM #24
Nanc's Avatar
Nanc Nanc is offline
Member
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Nanc Nanc is offline
Member
Nanc's Avatar
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Default

Quote:
Originally Posted by Brambledog View Post
Thanks Nanc

I'm sorry you're having a rough time of it too, it's horrible when you've got to get ready and go out...when all you really want to do is crawl into bed and sleep (if at all possible)... Hope everything goes well and you feel ok with it all.

Just got back from the last outing today. I'm shattered now! My feet are burning like crazy, my back is making me walk like a bow-legged old sailor and my knees are fat balloons. Glad to be back on my sofa! Had a weird thing just now - my finger on my right hand went all hot and fat, and I washed my hands after going in the bathroom. I happened to look at my hand while washing, and my whole hand was wet, finger pads and all - except the one that was hot. The pad area to the second knuckle halfway down was completely dry. It looked so odd, the water just wouldn't stick!

Take care everyone and I hope you all sleep well tonight. I'm feeling a little more myself today, despite the obvious stuff, so I'm hoping the worst is over. Thank you all over again lol

Bram.
Thanks Bram. We went to my in-laws and then to BJ's (a wholesale club). We needed to go to the grocery store after that, but I couldn't do it. My husband said no way! Said he could see the pain in my face. I completely overdid it. I was taking prednisone for the allergic reactions and now I am having shortness of breath. I cannot tolerate much as far as steriods go, so I thought I would try a low dose of it. I guess it helped the reactions calm down, but these side effects or whatever you want to call them, are not so great.

Glad you made it through you outings, sorry it was so hard on you. Hopefully the worst is over and you can rest up and get over this flare.

That is really odd about your hand. Sorry, I can't remember, do you have CRPS in your hands or arms? I would definitely keep an eye on that hand! So bizzare!

Hope you get some sleep tonight and wake feeling better!
Nanc
Nanc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AZ-Di (01-28-2014), Brambledog (01-27-2014), moosey2me (02-09-2014)
Old 01-26-2014, 08:31 PM #25
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

Bram, great job being there to celebrate with your daughter! I have a 14 y.o. daughter and I work really hard to try and keep her world as normal as can be. Your daughter will have good memories from this birthday! :-)
__________________
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:
AZ-Di (01-29-2014), Brambledog (01-27-2014), moosey2me (02-09-2014)
Old 01-27-2014, 01:40 AM #26
Vrae's Avatar
Vrae Vrae is offline
Member
 
Join Date: Apr 2011
Location: Denver
Posts: 703
10 yr Member
Vrae Vrae is offline
Member
Vrae's Avatar
 
Join Date: Apr 2011
Location: Denver
Posts: 703
10 yr Member
Default

Ut oh, I’m late on this. I am so sorry Bram honey, for being late and for the way you’ve been feeling lately. It is more difficult than anyone who doesn’t have this would ever know to push through a flare up; mentally or physically. How we try to keep living our life to the very best of our abilities in spite of it all. Man oh man have I been in touch with that lately.

I know you wanted to feel better on your daughter’s birthday. This damn disease gets in the way of everything, doesn’t it? All the damn time it seems. Grrr! Regardless, it sounds like she had a great birthday and is none the wiser to how hard it was for her mom try push through the celebration and try to enjoy it with her.

Perhaps there was some time well spent just getting to hang out for a while with your husband. Sounds like he’s trying to help. Of course they are men and not women or mom’s, so they are doing the best they can or know how to I think.

It’s simply and utterly amazing the sheer volume of pain we endure on a daily basis. Especially when it peaks, we want so desperately for the world to understand. How do we explain the unexplainable? The invisible? And yet, we pick ourselves up.. again.. and again…. And carry on. No easy thing, but we do it.

I’m glad it is starting to settle down a bit; crps and the weather. I hope you’re able to get some rest, and some good sleep. Again, I’m sorry that I was late on this. I’ve tried at least three times today to finish this and click reply <sigh>
__________________
CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,

Last edited by Vrae; 01-27-2014 at 01:55 AM.
Vrae is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AZ-Di (01-28-2014), Brambledog (01-27-2014), moosey2me (02-09-2014)
Old 01-28-2014, 10:43 AM #27
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

Thanks Vrae

...

I'm sort of a bit better, sort of not...I can't really describe it very well. I feel a bit weird tbh. I have an hour or so where I feel OK-ish and think I'm on my way back, and then I can feel completely wiped out. Earlier on, I felt ok and did some tidying and made a sandwich for lunch, sat down and started eating, suddenly overcome with nausea and tiredness. Not like me at all, and nothing I hadn't eaten before.

I woke this morning with a big fat lump of swelling over my left knee. Normally at night most swelling will dissipate. I've been having some deep throbbing pains in my left leg at times, then the burning more surface ones more often especially when I rest up for a bit.

Hey ho. What weird things this disease does to us... I know you guys get it.

Is there anything I should/shouldn't be doing right now? I spoke to the doc the other morning, he wasn't concerned so nothing to pursue there. I'm just generally tired at the moment, tired of fighting the pain so much. I want a break...

Don't we all, hey?

Hope you guys are all doing ok. I never forget all you good folk out there having it tough too and still giving your time and support to us on this site.

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:
AZ-Di (01-28-2014), moosey2me (02-09-2014), Vrae (01-28-2014)
Old 01-28-2014, 11:04 AM #28
Nanc's Avatar
Nanc Nanc is offline
Member
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Nanc Nanc is offline
Member
Nanc's Avatar
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Default

Hey Bram! Sorry you are having these additional issues going on. It is so hard to tell sometimes if it is CRPS or something else. But, with this delightful monster, things that happen are usually related

Maybe you need to relax and rest a little more. After all, you are getting over a pretty major flare. Sometimes I think I am feeling ok enough to do a few things and I start doing them and then have to immediately stop and sit. For this, I am suffering terribly today.

I sure hope you will get past this nausea too, such an awful feeling.

Take care,
Nanc
Nanc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AZ-Di (01-28-2014), Brambledog (01-28-2014), moosey2me (02-09-2014)
Old 01-28-2014, 08:26 PM #29
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
Red face

Quote:
Originally Posted by Brambledog View Post
Thanks Vrae

...

I'm sort of a bit better, sort of not...I can't really describe it very well. I feel a bit weird tbh. I have an hour or so where I feel OK-ish and think I'm on my way back, and then I can feel completely wiped out. Earlier on, I felt ok and did some tidying and made a sandwich for lunch, sat down and started eating, suddenly overcome with nausea and tiredness. Not like me at all, and nothing I hadn't eaten before.

I woke this morning with a big fat lump of swelling over my left knee. Normally at night most swelling will dissipate. I've been having some deep throbbing pains in my left leg at times, then the burning more surface ones more often especially when I rest up for a bit.

Hey ho. What weird things this disease does to us... I know you guys get it.

Is there anything I should/shouldn't be doing right now? I spoke to the doc the other morning, he wasn't concerned so nothing to pursue there. I'm just generally tired at the moment, tired of fighting the pain so much. I want a break...

Don't we all, hey?

Hope you guys are all doing ok. I never forget all you good folk out there having it tough too and still giving your time and support to us on this site.

Bram
Hi Bram!
You deserve a good long rest. Fighting the CRPS flare, taking care of home and family, hosting your daughter's birthday........and, and, and. it all takes a LOT of energy. Your body can only cope with so much at one time. If you had the flu you would take to your bed and recover. This is no different. In fact, its more important. Give yourself the permission to get some solid rest.
~ Lottie
__________________
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 (01-29-2014), moosey2me (02-09-2014)
Old 01-28-2014, 10:03 PM #30
Vrae's Avatar
Vrae Vrae is offline
Member
 
Join Date: Apr 2011
Location: Denver
Posts: 703
10 yr Member
Vrae Vrae is offline
Member
Vrae's Avatar
 
Join Date: Apr 2011
Location: Denver
Posts: 703
10 yr Member
Default

Quote:
Originally Posted by Lottie View Post
Hi Bram!
You deserve a good long rest. Fighting the CRPS flare, taking care of home and family, hosting your daughter's birthday........and, and, and. it all takes a LOT of energy. Your body can only cope with so much at one time. If you had the flu you would take to your bed and recover. This is no different. In fact, its more important. Give yourself the permission to get some solid rest.
~ Lottie
I like this and couldn't agree more. It (rest/sleep/recovery) is required, imo. That sucks when trying to keep pace with kids still at home, a home to keep up, work/job, etc. For me, balance is becoming impossible. CRPS is winning right now.
__________________
CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
Vrae is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AZ-Di (01-29-2014), Brambledog (01-29-2014), moosey2me (02-09-2014)
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
In a flare, I think FaithS Multiple Sclerosis 21 04-07-2011 08:41 PM
pseudo flare while still in a flare? legzzalot Multiple Sclerosis 9 09-29-2009 05:58 AM
Epic poem game Blessings2You Games 42 03-19-2009 08:27 PM
Flare up coletaterbug Multiple Sclerosis 5 09-14-2008 03:09 PM


All times are GMT -5. The time now is 04:54 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.