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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Drobin, and welcome. This is a great place to come for into, to talk, or to vent when you're having a bad day. Please share your story with us. How long have you had RSD? Where do you have it? Have you found a good PM? Do you have a stim or pain pump? Do tell! I have RSD in both of my upper extremities from a car accident on 12-29-02 (I wasn't at fault at all). So far I have refused the stim and pain pump (I feel it's too early in the progression of my condition, and I am also very fearful of anything that might stimulate my nerves as I've had bad experiences with that in the past). I take oral meds to help control it. I sing the praises of cymbalta for my depression and am in the process of weaning off of Neurontin and am starting to take Lyrica to see if it helps me more (I've been on neurontin for 3 years). I get frequent migraines and severe stress headaches and have had botox injections for them that helped me soooooooooooo much that I want to get the injections again. It's supposed to last for about 3 months but I had relief for 6 months which was GREAT because I found the injections to the back of my head and neck to be rather uncomfortable.
Cathy
Hi Ginger--Hang in there girl. Yes the first few years are the hardest. It is an emotional rollar coaster with lots of dr's. The ones that make you mad are the one's that tell you there is nothing wrong with, I can't help you, or it's all in your head! :dizzy: and I hate pills too, I used to be a small bottle of tylenol a year if that. It will and does get better. With our RSD brains, it's a good idea to on a seperate not***** to write down things you want to ask your doc before seeing them. If it is alot, I put A's by the first important ones, than B's, etc. That way when you see them, you at least get the most important ?'s answered. If there are way too many ask for an extended visit. That way they aren't looking at their watch. :)
You might want to consider a chill pill. If you used to be very active and hyper like me, it can be just as effective as anti depressant. I take 3 a day, sometimes too if I'm too stressed out, becuase stress makes the pain worse.
I think too from whqat other's have suggested is that you try the Lyrica. I have personally not tried it, but did the Neurontin. :nono: That was a bad drug. It seems to work wonders for people here who have that burning, stabbing, knifelike pain. I too was sensitve to anything or one touching me. I wore layers, and soft baggy cotten or flannel.

A far as a hobby goes, do you like crossword or jigsaw puzzles? Reading, there is so many choices of mystery, drama, romance it is good for the mind, and once you find an author you like, the library can recommend others. Try Sue Grafton. She is Private Eye and her book start with the alphabet. Ais for Allabi , B is for Burglary. She is up to S now. But start at the beginning. I tell you you can't put them down, and it get'syour mind off of your pain and your situation, plus you will build a vocabulary. I always wanted to learn a foreign language, and thought about getting the tapes, in case I fell asleep. LOL! Subliminal is good for retention so they say. Videos are great too, because you can watch and pause them, and move around. It's important to not be in position for too long. Do they have support groups in yor area for people with chronic pain? I started one here, ms type A, and met so many neat people all in the same boat. That kept me busy.
Hope this helps, and chin up girl. Keep us posted and let us know what happens. Acceptance is half the battle. Aloha Skooze
Hello Ginger! :wave:
Sorry I haven't been around, I've been too busy working what but I have off. I don't know if it is night or day, I'm a wreck . . . :jester: So if I sound goofy, that's how I get when Im tired.

My advice to you is don't take the NeROTTEN!!!! What ever you do, lie, cheat or steal DO NOT TAKE THAT DRUG! It doesn't work. I called Phizer, who makes the drug, & they told me it was not approved for RSD! I flushed every pill down that they gave me. I took them at first, but it made me worse asnd physco. I was walking into walls, tripping on things, & got some serious injuries from that drug. Taper off of it. Tell them what you are experiencing--your symptoms--read the side effect sheet that comes with it, and name every adverse effect, whether you have it or not. Ask for Lyrica, which is better for the nerve pain. I'm happy that you get to see a pain pshysch! :D Mine helped me so much when I was Dx'd with RSD you won't believe the difference. They put everything into perspective. Go with an open mind.

I'm sorry that you are a ball of fire! :( I was and still am. I got it under control until I started working again. Yes, RSD spreads, & right now mine is spreading into my lower left and right leg. :eek: I have these knots on the outer side of my legs, from standing on my feet for 3 or 4 hours, & if anything touches them, it sends me to the moon :blob_fire I was a lot better before I started to work. I put in my notice, and they said you can't quit--you are too good at what you do. They promised me they would keep me at 1 to 2 days a week, as I was promised when hired, but ended up working 5 days- 6 days. I don'[t want it or need to lose my disability benefits, because once you are deemed disabled by ss, you 9 out of 10, will be always disabled. But the fire and the pain has come back with a vengenance, My whole body hurts, even my teeth. :blob_fire I haven't felt this bad, since I first had a name to this monster that invaded my body, and set up house. Then he invited a few friends over, & then they were bouncing off the walls, throwing fireballs at me. :jester: Just kidding, but not. I hurt everywhere like you.

Ginger I'm just curious to what kind a work you do? Sounds like alot of corporate Structure. What is a personnel director? Is that like who is head of Human Resources?? Let me just say, with RSD it is soooo hard to work. Is the attorney you are seeing, a social security attorney, or a work comp attorney?
Did you find out if you have Temp. Disability insurance? I don't mean to scare you, but this is like playing a wicked game of chess. You need to think, before you make you're next move. About the job & not working--surrender. I, too have worked since I was 12 and on my own since 17. Do you have any family that can help you??

Before I go, why do you ask if RSD spreads?? Is this happening to you, and where? Sorry to ask so many ?'s, but it helps, when responding to you. :)
Whoa-- my fingers hurt from typing, gotta go. Please keep in touch. Aloha Skooze
:wave: Skooze
Well I'm slowly tappering off that MOROTTEN and slowly starting on LYRICA
75 milg 3 times a day somethings gotta chill this out how much pain can one person take :blob_fire I know we are all in some kinda H*** :mad: But you know if they can cure cancer and clone a sheep why not this ? Here I go off
the deep end :confused: :nono: HAY! how are YOU felling ? So tell me about Lyrica will It calm some of this down and how long ,till I fell the diference . I have never taken this drug . MOROTTEN just about drove me
over the edge :nono: I was not HERE , THERE, or ANYWHERE, :dizzy: with that drug.Well my boy's leave this Friday for their 3 day excursion skydiving,
an caving .WHILE I stay here and ponder,an fell sorry for myself :( And wonder why .I have been waiting to go on this trip for 7month's .Not to just sit here and mope or have some one tell me you can go and take picture's and watch the campsite, I don't think so ! Or film us jumping ! YOU can biteme! OP'S I'm doing it again ! :nono: Time for me to go.

:blob_fire ginger
Hi Ginger :wave:
You blob of fire-- you crack me up. I am so happy that you are off that NO MO'ROTTEN, and on Lyrica. I personally have never tried Lyrica, but I see my doctor tommorrow, and she's been on vacation, so I'm sure she will be a quick in and out. I posted an earlier thread, is Lyrica better than Neurontin. .. and it's quite lengthy. Youmight want to read that. It's several pages long.

Did you quit the NO'MOROTTEN cold turkey?? I hear that the Lyrica is so much better. Mo bettah you might say. Maybe you'll come out of that fog. But the NeROTTEN hangover will stick around. Don't mean to get you down, I'd have loved to sue that Drug company. I've been babying myself lately. Eating and sleeping. My last day of work is Saturday night from 6 to9:30. It is so dead in there, whoever I work with will take turns sleeping in the dressing room with the booth!!! :D That's on my agenda. My feet are both on fire :blob_fire but they feel ice cold. They are still swollen from that 2 month job. What acrazy girl I was thinking I could take a job. I think I just wanted to get away from HOME. But now that my daughter's boyfriend has been relocated, it is not as bad. I only have 1 teenager sprouting on my couch instead of 2. I know my food bill went down, as did the electric, etc. I'm even gonna take the the turd to small claims court over the money he owes me. I'm half Irish and all RSD, and I love the new Dixie Chicks song, I'm mad as h***, fThat is my new cell phone ringer. :cool:

I pray Ginger that you get some relief from the the Lyrica. You really and truly deserve it. Think positive, take a bubble bath, and Shake it off. Guaranteed their won't be any mosiquitos in your tub. :D Sounds like you don't need anymore bites. Now I'm getting silly. Have a better tomorrow. P.S. Can't wait to you change your favorite icon to this :bouncing: Aloha Skooze
:wave: Hay Skooze
Guess what with Lyrica you don't sleep.This girl has been awake for 2 day's straight so don't mind my typing . WENNING off BIG MO! and taking LUCY
what a mess :dizzy:I'm sorry to hear your about done with your job but it's
for the best but I hear YOU are going to be hard to replace RIGHT. So you
will be OFF your feet RIGHT :bouncing: or will you be like this CRAZY GREEN
critter ! Well as I say 3 down 0 to go or in your case 2 and 1 to go . Well let me tell ya they always come back and they always come back with more , well at least mine DID! But I love them all no matter what. Well love ya skooze gotta go .
THE CAT needs a feeden and the DOG'S a barken OH boy it's BIG MO and
LUCY speaking.
:blob_fire ginger
First off before I ask my question,Skooze love the ringtone idea.that's awesome. Had to laugh at comment about Irish and RSD too. The kids in BIG trouble. Anyway I was wondering about the morotten and Lyrica. My regular doc mentioned both meds to me to try... on Lyrica now . Makes me soooo sleepy :yawn: and out of it.Not doing anything for the pain yet. I am afraid to drive at times. How long till it usually starts to help? Thanks to the advice here I won't even consider the morotten. Thanks for the help. :)
Wishing all better days, Sherri :)
:wave: Hay SHERRI K
I was on that MOREROTTON :nono: and what a wild and crazy ride it took me on it was'nt for me. NOW on Lyrica it seem's to ease the burning
and pin's . But these flair UP'S are an eye opener .I think it took about 2
week's before I felt any diference but everyone's dif.So goodluck .





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