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 09-02-2008, 11:53 AM #1
Desi's Avatar
Desi Desi is offline
Member
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Desi Desi is offline
Member
Desi's Avatar
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Attention Went to my doc.'s app. ....

Hi all! Ok, went to my doc.'s today and he said not only do I have RSD I also have something called,Fibromyalgia?? He explained a little of what it is. When he touched me in certain areas, especially my ankles, up on my shoulders, and so forth, I wanted to cry, but didn't. I am still on the same meds. Fentanyl patch, percocett for break through pain, Neurontin(Gabapentin) He upped this to 6oo mg. 3x a day now. I'm also, still on xanax and EffexorXR and amitriptylin. There are times, when I get out of bed and it hurts to even walk! My knees hurt too. This RSD is still kickin' my *** too! LOL Does anyone have a good link to this? Does anyone else have this? thanks and love to all!~Love, Desi
__________________
I Will Always Believe in Poems, Prayers And Promises
Love, Desi
.
Desi is offline   Reply With QuoteReply With Quote
Old 09-02-2008, 03:37 PM #2
debbiehub debbiehub is offline
Member
 
Join Date: Oct 2006
Location: Long Island NY
Posts: 765
15 yr Member
debbiehub debbiehub is offline
Member
 
Join Date: Oct 2006
Location: Long Island NY
Posts: 765
15 yr Member
Default Fibro

Quote:
Originally Posted by Desi View Post
Hi all! Ok, went to my doc.'s today and he said not only do I have RSD I also have something called,Fibromyalgia?? He explained a little of what it is. When he touched me in certain areas, especially my ankles, up on my shoulders, and so forth, I wanted to cry, but didn't. I am still on the same meds. Fentanyl patch, percocett for break through pain, Neurontin(Gabapentin) He upped this to 6oo mg. 3x a day now. I'm also, still on xanax and EffexorXR and amitriptylin. There are times, when I get out of bed and it hurts to even walk! My knees hurt too. This RSD is still kickin' my *** too! LOL Does anyone have a good link to this? Does anyone else have this? thanks and love to all!~Love, Desi
I have been told I have Fibro too. It really doesn't matter at this point. The treatment is pretty much the same- if you google it you will find a lot of article..It is much more common then RSD.

Deb
debbiehub is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Desi (09-07-2008)
Old 09-02-2008, 05:08 PM #3
Debby's Avatar
Debby Debby is offline
Member
 
Join Date: Aug 2006
Location: N CA
Posts: 365
15 yr Member
Debby Debby is offline
Member
Debby's Avatar
 
Join Date: Aug 2006
Location: N CA
Posts: 365
15 yr Member
Smile

I was diagnosed with Fibromyalgia in 1989. It was determined, from my medical history, that I have probably had it since birth. I have had muscle pain my whole life. I had pain in my legs that I remember curling up or rocking in the corner of our couch crying with it as young as 6 or 7 yrs old. My Mom even took me to the doctors, this back when parents didn't run their children to the doctor for everything under the sun. He said it was of all things "growing pains". I believe they have determined there is NO such thing as growing pains haven't the? *LOL* If not, they should!!

The pain of RSD has over ridden the Fibro pain for the most part these last 5 yrs. I honestly didn't think any pain could out do Fibro pain, but I was most certainly wrong. Fibro pain would literally knock my sox off!! I would miss work periodically due to Fibro pain & had it set up that when it did, they could not hold those days off against me as I would use Federal Family Leave Act for those days. I could use up to 3 days a month. It was especially bad in the Spring & Fall when there were lots of weatjer fronts moving thru. The Barometric Pressure changes were devasting for me especially the Lows, which btw are still bad for me. Here in California the changes in weather are not as severe or as often as they were in Iowa. But, like I said, before RSD I also did suffer horrible flares of Fibro pain. Now that my RSD pain has been more in control, I do suffer from Fibro pain again. It is utterly two completely different types of pain. I can absolutely tell the difference from when RSD or Fibro pain is flaring & when they are both flaring. I took Vicodin then Norco for Fibro pain when needed. Neurontin did not help the Fibro pain for me. Now I have a few real time friends with Fibro who say Lyrica has absolutely changed their lives for the better. Has literally given them back their lives. I do not take much Lyrica anymore as I gained way too much weight on it & all I did was sleep while taking higher doses. I only take 50 mgs at bedtime now. If my feet are flaring with the burning pain of RSD I might pop an extra 50 mgs to help cool them back down. I do however take 900 mgs 2x's a day & 1200 mgs 2x's of Neurontin for a total of 4 doses. I truly can't tell you if Lyrica helped or Neurontin helped with Fibro pain this time around or not. Before RSD I would feel as if I walked on bruises due to Fibro. Now it is more a bone deep pain in my feet, when they don't burn like smoldering coals or feel like they are thawing out from a deep freeze, or numb with a pins & needles affect (or is it effect? just can't remember which is correct anymore) or cramping etc etc etc. Sometimes now when I combine Aleve with what I take for RSD pain (morphine with oxycodone for BTP) it helps with the Fibro pain in my muscles.

What I am getting at tho, is that they are, atleast for me, two completely disparate types of pain.

Not sure if any of this was helpful or not. And I sure hope it wasn't too confusing a read. That happens when I write now days *LOL* I did reread this & it made sense to me anyway as is *LOL* but then what can I say? *LOL*

Good Luck,
Debby

Links:


National Fibromyalgia Association
http://www.fmaware.org/site/News2?pa...rticle&id=7355

Dominie's Fibromyalgia & Chronic Fatigue Syndrome Homepage
http://www.fms-help.com/

Last edited by Debby; 09-02-2008 at 05:34 PM. Reason: added Fibro Links
Debby is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Desi (09-07-2008)
Old 09-07-2008, 01:25 AM #4
Desi's Avatar
Desi Desi is offline
Member
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Desi Desi is offline
Member
Desi's Avatar
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Default

Hi Debbie. Ya know, I took my young daughter to her peditrician's office three times, and he indeed told me what she had was "Growing pains"! I told him that there is no such thing, as I was told by countless others. Her legs hurt so bad that I have to massage them, give her children's motrin. The only time they bother her is at night time!! I also have been keeping track of what she does that could cause this bad pain that she has so much. She jumps on a trampoline, when she is running all over the place here and there. When she does a lot of walking. Then she complains and cries so bad, that I really get scared and think that she may have this, Fibro?? I mean, why would a peditrician believe they are growing pains? I don't think they are! I need to get her into a good Dr. so he can test her. She also gets the worst headaches, where she cries, I have to give her motrin, put her in a dark bedroom with a ice pack on her head. They are getting pretty bad now, so, she will be going to a specialist soon in October. As for me, my wrist and hand are so blue and cold, that I am going crazy with the pain, plus fibro on top of RSD! I hate it!! Your post made very good sense, to me, Debby. Thank you! I sure do know what your talking about that bone crusing pain of RSD, but this fibro is a real butt kicker too! Yes, the pain from RSD is wayyyyyyyyyyyyy painful compaired to RSD. To have them both at once, is the real butt kicker! Thanks again, Debby!~Love, Desi
__________________
I Will Always Believe in Poems, Prayers And Promises
Love, Desi
.
Desi is offline   Reply With QuoteReply With Quote
Old 09-07-2008, 01:06 AM #5
Desi's Avatar
Desi Desi is offline
Member
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Desi Desi is offline
Member
Desi's Avatar
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Default

Hi Deb! Thanks for telling me to "Google" this, wow.. it has a lot of info. I must have searched, looked at everthing it had to say about Fibro. Thanks for telling me to google this again, it is very interesting stuff. Now, I see why I hurt and feel so bad. This I hope will go into remission with that darn beast RSD. ~Love ya~Desi
__________________
I Will Always Believe in Poems, Prayers And Promises
Love, Desi
.
Desi is offline   Reply With QuoteReply With Quote
Old 09-02-2008, 08:52 PM #6
naja210 naja210 is offline
New Member
 
Join Date: Sep 2008
Posts: 3
15 yr Member
naja210 naja210 is offline
New Member
 
Join Date: Sep 2008
Posts: 3
15 yr Member
Default

Quote:
Originally Posted by Desi View Post
Hi all! Ok, went to my doc.'s today and he said not only do I have RSD I also have something called,Fibromyalgia?? He explained a little of what it is. When he touched me in certain areas, especially my ankles, up on my shoulders, and so forth, I wanted to cry, but didn't. I am still on the same meds. Fentanyl patch, percocett for break through pain, Neurontin(Gabapentin) He upped this to 6oo mg. 3x a day now. I'm also, still on xanax and EffexorXR and amitriptylin. There are times, when I get out of bed and it hurts to even walk! My knees hurt too. This RSD is still kickin' my *** too! LOL Does anyone have a good link to this? Does anyone else have this? thanks and love to all!~Love, Desi
I have been living with fibromyalgia all of my life but only knew the name about 8 years ago. The only things that really help for me are cutting out red meat and eating healthy and walking. Believe me I know the feeling of the pain so bad that you are laying in and need to go to the bathroom so bad but you look at the floor and the thought of the pain of your feet touching the floor makes you want to cry. On good days or not so bad days try to walk, it really does help.
naja210 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Desi (09-07-2008)
Old 09-07-2008, 01:33 AM #7
Desi's Avatar
Desi Desi is offline
Member
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Desi Desi is offline
Member
Desi's Avatar
 
Join Date: Apr 2007
Location: Ohio
Posts: 941
15 yr Member
Default

Hi Naja! I used to walk 2-3 miles every single morning. walking makes this fibro worse! I'm lucky some days getting up and down our stairs. It is so darn painful all over my body. It feels like my feet are crushed by walking!! I went to our local fair and had to leave. All we did is walk, sit down to eat, walk, walk walk!! I was in bed the next day and couldn't do nothing, as I ached all over. I still am in great pain from my RSD, now, this Fibro. It's kicking my big butt all over the place! LOL thanks for posting, Naja. ~Love, Desi
__________________
I Will Always Believe in Poems, Prayers And Promises
Love, Desi
.
Desi is offline   Reply With QuoteReply With Quote
Old 09-03-2008, 12:35 PM #8
screwballpookie screwballpookie is offline
Member
 
Join Date: Jul 2007
Posts: 207
15 yr Member
screwballpookie screwballpookie is offline
Member
 
Join Date: Jul 2007
Posts: 207
15 yr Member
Default

I have not been diagnosed with fibromyalgia, but my understanding is that it is pretty close to the same as RSD. How true is that? All I know is that my left side from my hand all the way up to my whole entire shoulder and sometimes my neck hurt so bad that it is getting harder to move it. Could anyone tell me what the difference is between the two. Desi I am so sorry to hear that you have been diagnosed with fibro as well. I wish you well and hope it doesn't get you down to bad. Remember we are all here for you if you need someone to lean on. We will do the best we can. Take care and soft hugs sent your way.

Sincerely,
Screwballpookie
screwballpookie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Desi (09-07-2008)
Old 09-03-2008, 12:57 PM #9
ali12's Avatar
ali12 ali12 is offline
Magnate
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
ali12 ali12 is offline
Magnate
ali12's Avatar
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
Heart

So sorry that you have recieved a diagnosis of Fibromyalgia, Desi ((pain-free hugs)).

I haven't been officialy diagnosed with Fibro, although I do have a lot of the symptoms such as fatigue, tenderness in certain spots etc. I read somewhere that you have a much higher risk of developing Fibro if you have RSD or other chronic pain conditions and that in a lot of situations RSD and Fibro go hand-in-hand.

I wish I could help you more, just know that we're all here for you if you need anything.

Pain-free hugs
Alison
__________________
To the World you may be one person, but to one person, you may be the World.
ali12 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Desi (09-07-2008)
Old 09-04-2008, 07:01 AM #10
lostmary's Avatar
lostmary lostmary is offline
Member
 
Join Date: Apr 2007
Location: fredericksburg, Virginia
Posts: 459
15 yr Member
lostmary lostmary is offline
Member
lostmary's Avatar
 
Join Date: Apr 2007
Location: fredericksburg, Virginia
Posts: 459
15 yr Member
Default

Awww Hon,

You don't deserve it. I agree with others that it often goes hand in hand with rsd. At least now it has a name and you know that you aren't losing your mind. I hope they can get it under control and get you feeling better now. I always joke that I don't know who I made so mad at me, but I'm sorry.lol... How is Bill doing? you have to take care of yourself or you will not be any good to anyone. We need you..

Hugs
Mary
__________________
There is no future, there is no past, we must make each moment last
lostmary is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Desi (09-07-2008)
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



All times are GMT -5. The time now is 04:20 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.