Reflex Sympathetic Dystrophy Support Group

Filling out your profile helps in many ways. One is just to help the other members to get to know you better. Also for those of use that have short memories, it helps us to go back and look at the profiles to remember how people came about to be here.

Also, it helps the leaders keep this a safe place for all members... Safe from, spammers, people selling products here for their own gain. It also helps us to watch out for people that have other reasons to be here, that are not of the supporting nature, if you get what I mean.....

So please if you have not done so, please go in and fill out your profile. You are not asked to give anything that is personal, do not give addresses, or phone numbers. Just give a brief note of how you came to have RSD, any treatments or meds that you have had, if anything has worked for you.

If you feel like it, give a little about you, your life.... that is up to you. If you like please go in and look at my profile, this is alot more than I would expect from any one but it might give you some ideas....

Again Thanks..... Hope you all have as Pain free a day as possible...

Craig

Thank you , you beat me to it. I agree with all you've mentioned. My memory is so bad that profile help me a lot.

Plus it very much helps us know who is really here for support vs other reasons.

Thank you,

~Twinkle

Thanks

Craig

I'm Twinkle, another of your Leader's here. Please take a little time to fill out your profiles. You do not need to include personal information such as phone numbers, addresses or locations, or even your real name. Your anonymity is important to us. You don't need to use a real picture either. If you like you can find a graphic to use as your default photo. Something for us to remember you by.

Please fill in a little about yourself, even more indepth if you like.

This gives us all the opportunity to learn you. And remember you since many of us struggle with memory issues.

Share yourself, your story, when you were diagnosed etc.

Craig said it all above.

We've noticed several empty profiles.

Looking forward to reading about you in your profiles soon.

Thank you

~Twinkle

P.S. For the time being you will find this thread always at the top. This is so that everyone has the opportunity to read it before it scrolls off the main screen.

Post edited by: rsdcrpsfire, at: 08/19/2011 02:27 PM

I'm new to this board....unfortunately not new to RSD...my husband actually found this board and encouraged me to look into "talking" to folks here. I've been fighting RSD for 14 years now....I used to figured skate professionally, now I consider it a victory if I was able to walk without my cane for the day. I am in a massive flare up at the moment, it's attacking my right leg (where it started), mirroring into my left...and somewhat into my arms for the first time...I'm struggling a lot right now....working with my local doctor and going back to the Cleveland Clinic to see what they can do to help find some relief for me.. I'm also a new mom and trying to go back to a full time job....and feeling like my body is just going to fall into fiery pieces around me...like plane wreckage or something. Anyway- I'm getting off topic. I'm a wife, a mom, a fighter and someone who is losing the battle to this fire breathing dragon that is RSD at the moment. And looking for some support from people who understand...

I'm so glad you came to the group! Good for your husband... he could see a need for understanding that he couldn't give you. Wow regarding 14 years. I've "only" had RSD for 5 years, but there are others here who've had it much longer like you have. I can tell you know the "facts" already, but once we know it all we have to find our ways of dealing with it. How old is your little one? I've got a new grandson that I'm dying to see but can't get there. Do you have a boy or a girl?

That's really exciting that you've been a professional skater. How cool! Was it an injury from skating that led to RSD? I've got it in my feet and legs, too, so I know what you mean about having trouble walking. I can't believe you can accomplish so much with a baby and full-time job. Tonight I convinced myself that I really could change the burned out light bulbs in my closet and main family room and I was thrilled when I did it. It's pitiful. You run circles around me!

Do you have good doctors? What have you tried that has helped you? Do you have a spinal cord stimulator? Have you thought about or had ketamine infusions? It sounds like your fighting spirit has brought you a long way, truly, into becoming a mom and not giving up. Keep up with that! I sense a fear of the spread. Mine started in my left foot and only in the past few months has gone into my leg and other foot. In fact, just tonight it was burning on the inside of my right foot, where it had not burned before. It seems like there are changes and spreads almost every day lately and it's very scary. All we can do is take it one day at a time and look for whatever joys and happiness each day might bring. I'm sure your child is a great source of joy for you. I wish I could take away the pain.

Stay with the group for awhile and see what you think. There are really good people here who have helped me when I'm down as well as teaching me things. I'm very thankful to have met them all.

Take care,

gail

This is a great bunch of people who truely listen and try to make you feel better. Almost like a second family. Hope to hear from you again.

Cindy

Please feel free to read past emails and topics. There is a wealth of information and you can meet us in our comments. Personal questions, comments are welcome in PMs (personal messages.) All the leaders and most other members are happy to help you out.

We try here to speak out of our own experiences as most of us have no medical training. When I am not deep in my own valleys of despair (as I have been lately) I operate in hope and in staying busy doing what I love to do. Each of us has our own way(s) of keeping going and we will appreciate knowing how you have managed in your 14 years with this disease. We hope you will find a this group a good place.

Sending hugs and prayers that today will be better than yesterday and you will rest tonight.

Rev.

Post edited by: Rolphster, at: 07/13/2012 03:02 PM

I have found in this group answers to a hundred questions, a place to vent my feelings where I would not be judged, a place where new friends accepted me and my RSD/CRPS without judgement and were willing to walk with me when I have needed it but also to help and let me walk by myself when I desired it. I lived 8 years with RSD/CRPS alone and feeling desolate. Then I found this site and now I know I don't face this dread disease alone and I don't know how I survive without this group. I hope you find the support you need here with us but if not then somewhere else. I hope this group is what you want.

Rev.