RSD/CRPS Doesn’t Own Me’s Chat Room

This is a place where you and others can discuss RSD/CRPS related topics. Chat is officially open during listed times, but the conversations can happen at all times. But those are our key hours of when moderators try to be on.

Weekly RSD/CRPS Chat is now held in [invitations_for_slack_badge clickable=”yes”] for 1 hour starting at 6 pm GMT & 7 pm CST.

Which means about this time everywhere else:

Saturday US noonish & European evening: 6 PM in the UK  (click the link to see what time it is there now)
US Saturday evening & Asian/Pacific region Sunday morning: 7 PM Central (click the link to see what time it is there now and when the time zone changes)

General world times can be found here

To be reminded of these times add our calendar to your list by clicking:

Please note:

We have our chat requires prior registration.

Chat access:

You can access chat a multitude of ways. No one way is better than another. Naanad has used all of them at one point.


We try to avoid swearing at each other, negative discussions publicly(sometimes we just need someone to vent to so private discussions as long as it’s agreed upon by the second party), discussing doctors names specifically, giving medical advice, selling items in chat.

Ban-able situations if warned and you don’t listen: (yes some of these have happened)

  • If you have tried it or know someone who has, you can share, but don’t tell people medicines to take or treatments to try.
  • Calling a moderator “INSERT BAD WORD(s)” for warning you the above is not appropriate and please do not do it again.
  • Trying to have people contact you about the product you take, but you also sell because it makes it cheaper. (We get it works for you but making money off your fellow pain patients is pretty tacky. But if you are willing to send free samples, that is not selling, but does get to a be gray area.)

And please remember with suicidal thoughts. While we ALL have been there, this is best kept private chats because not all people are sure or comfortable with how to handle this situation and some actually pick up those negative emotions and can become so themselves.

  • But definitely please reach out to someone you know who are willing to help privately, someone who knows you personally, a local friend or even the suicide help line. Because while we KNOW negative sides of the coin exist, it doesn’t take much for us to lose the positive grip on our lives.

12 Replies to “Chat”

  1. I have tried for two weeks to get into the chat room but there must be a magic code I really need to talk to others but apparently this is not the way

    1. Thank you Janice, I’ll email you to get more information to be sure, but based on when it appears you posted this, you came to the chat after the chat closed. Which is why it is asking for a code.

      Our chat is only open for 2 hours (sometimes 3 dependent on the conversation and number of people at intended chat close) during our posted time of the week. There are reminders on our Facebook page so people know when it is coming up. (The times are also listed at the top of this page.)

      Unfortunately though, we do not leave it open at all times. This decision was to ensure we have moderators when it is open to ensure we do not have bullying or solicitors using our chat to manipulate people. I’ll discuss this with you further when you are online next.

  2. I have Type 2 CPRS, it has taken over my life. I just someone to talk to about all this. I have a 5 year old and a 16 year old, & Momma isn’t Momma anymore!!! My life came to a complete stop. I take pain pills all day and I had a spine stimulater placed around Christmas, still NO RELIEF! I do sometime feel like just giving up, bc my day seems to be from the bed to the sofa. I cant stand to walk bc it feels like I’m walking on broken glass all the time in my left foot. Now my leg is just as bad….just need someone who knows what I’m going thro!

    1. I’m so sorry. I completely understand. I also have this awful disease. However, I am an older woman who has raised my kids. It must be so hard to deal with the pain and try to smile at the children. Do you have help?

  3. I have had CRPS for about 7 months. I have been to two specialist, three other Dr, physical therapy, and in pain management. they are planning on sending me back to physical therapy after they get my pain under control. I’ve tried several medicines and have had, 4 spine injections. Some days it so hard to do anything form the pain then the medication. Plus it has made my depression way worst. There are some groups that I talk to, but sometimes I don’t get responses back for a long time. I was going to try out something a little different for a while and see if that helps any.

  4. To the above two-Toni and Kristen–I know what you are talking about-either the chatroom is not available until a specific time(s) or in my case and a few others I know personally-they have never heard of such a thing or think you are making it all up-I know how “Mommy doesn’t feel like Mommy anymore”-and I had to practically raise my 2 beautiful boys alone whilst battling this horrible disease–I did have help from my dear Mother-God bless her Soul-she passed in 2010-but all of the Dr.’s appointments, different meds and therapies, now, after 12 yrs. of being on Work Comp.–now they will not pay for therapy of any kind for me–this is after I won my case, have legal docs saying this and now they tell me that “there is no justification for your therapy.” Now, I am trying to figure out what legal procedures, if any I can do to stop this-anyone out there have any suggestions? I would really appreciate it-Thank you for any of your time—-Elizabeth

    1. That is correct. If you read the page at the top it gives the times we are open each week. Due to the severity of this condition we make sure chat is always moderated (preferably by two) to insure our pain family members might not be targeted by solicitors or abusive persons without some sort of protection.

      We used to only be open 2 hours in a row but recently split it to allow those in Europe the ability to attend as well.

      All moderators have the condition or are in remission but we definitely know the monster.

  5. Elizabeth, contact your attorney, he can take W/c to court make the pay pt. I go thru it all the time, my attorney went to court Again. I won, now they do not turn down my request. I have gone thru it since ,2002.

  6. Have had CRPS for 5+ years and it sucks. Today I was so sick from the pain and stress that I didn’t even try to do anything. This is especially frustrating to me since we are remodeling the house and I can’t help do anything. I feel totally useless and like a burden. Doctors, meds, physical therapy,and arguing with my insurance over the need for continued treatment, all of it is just getting to be too much. All I seem left with is to curl up and cry.

  7. Geniveve
    I am so sorry you are going through all of this
    You arnt useless It Is just a bad day for you. I have been doing this for over 20 years now and It drives me crazy. W/C Starting to take my pills from me now ROXICODONE and I really feel
    the next one will be the long lasting one
    OXYCONTIN which saved my life for I was at my end when I started taken these pills. I still have pain but not as bad.

    My Dr and my Lawyer can not do any thing about W/C taken my pills. anyone else out having trouble with them and answers out there?????
    Please I really need to talk to some one out here

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