NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Goodbye (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/6813-goodbye.html)

Hey....what happened? Is ther something we should know about? If so, please tell us. Don't leave us, Flippnout. YOu need support, just like all of us do. At least keep in contact with those you trust via personal emails.

Hi,

The old board is still there, if you need it, you know....hope you're able to get through this bad time..come back and see us whenever you feel like it.

Um..Lisa's right, though, maybe you should PM one of us, if something sinister is going on, whatever it is, best to tell someone (pleeease?)...

Take care, take your time, you're more than welcome to PM if u feel like it, hope you feel a bit better soon,
all the best :)

Hey Flipn

One should never replace the internet from the advice of a good doctor - EVER!!!
That is rule numere uno!!!!
YOU are your number one priority and that takes precedence over everything and everybody.

People here are just sharing their personal experiences- most, hopefully with good intentions - However ,that too can never replace a doctors medical backround and experience and shouldn't-
Maybe their doctor practices from different guidelines - who knows.
And, please if you can - don't give a thought to the people "looking " at you .They have no idea what kind of ride you have been on and how brave and strong you are!!!!!!!!!!!!!

You are still so so fresh after surgery .I felt like crap for a long time after bilateral ribresections .I didn't want to talk to anyone or deal with the world in general. I was pretty angry at everyone including God.It is a very tough go.

You do whatever you have to do to make yourself better.

best of luck
GnP

I don't think I have had the pleasure of meeting you before now, and I hate that you are having such a terrible time. I had to quit working when I first got the RSD in my foot, because I had a hair salon and couldn't stand to do hair. After I was put on Methadone I was able to wear a shoe again after 3 1/2 years of not being able to, and now am working. I do have days where I would love to stay in bed but when I do it makes my Fibromyalgia worse.

I do know how you feel about people staring at you when you park in a handicap spot and they think you are too young, and they don't see me in a wheelchair or with a cast on my leg, but if they knew how horrible the invisible pain was they wouldn't stare. If I am having a good day and can find a parking spot pretty close to the building then I don't use the handicap but if I am having a really painful day and don't think I can make it then I put my placard in the window and park where I need to park.

A couple of weeks ago I pulled into a handicap spot and had just pulled up and was getting my placard out to hang on my mirror and this under cover cop came up and pulled out his badge and said "you're in a handicap parking spot" and I puled out my placard and showed it to him and told him I had just pulled up and he judged me before even giving me time to get the placard on the mirror. He just rolled his eyes and walked off. It really made me angry, but just because he was a jerk I decided not to let the anger make my pain worse.

I do hope you will keep checking in and give support to those who ned it as well as take support from us, th people who know exactly what you're dealing with.

God Bless you, and I pray that you will get pain relief.

Hugs,
Janet

Dear Flipin'

I see that you posted the same exact message both here and on TOS. I have upper RSD, I don't have TOS. I so understand your feelings and to me you seem to be frustrated at this point of your health situation. I remember oh so well when I was stuck on a mattress downstairs, writhing in pain, unable to move my fingers, wrist, arm, and had a frozen shoulder that hurt with every breath or movement I made. I truly thought I'd die before I'd get better.

BUT...my angel came in the way of my PM doctor who 6 years ago or so said, I can't cure you but we are going to TRY to calm down the sympathetic nervous system and at least make you more comfortable. I must say, he did what he said.

So you say, "be careful what info you take from these sites you don’t know who is on the other side giving information to you" - This comment is oh so correct.

BT original was set up for patients to share their "experiences, stories, and life" as we know it. How we deal with our conditions day-to-day. We only try to come together to help each other, support each other and especially to let each other we are not alone.

As far as who is lurking in the shadows? Oh dear! This "could" be a dangerous place. The internet in general is a very dangerous place. Insurance adjusters, your doctors, even your local friends and neighbors can log on here and see what you are saying and what you are doing day-to-day.

So, dear flippin' if you say it is your time to take a break from this lovely, adorable and sometimes a little nutty RSD support group, please adjust and take your time. You will always be welcome here with open arms and hopefully you will return very soon.

I'm so very sorry you are in such pain. I hate to hear that a fellow RSDr is sad and hurting and doesn't feel supported here anymore. My words here come from the heart. I hope you realize this.

Please be good to yourself...remember to eat a well balanced diet and try to find something good to smile about each day. Thanks for listening to me. I wish you well and please be safe in whatever you do.

With aloha, Dana