BeyondGabapentinoids: Transitioning Members from Lyrica Survivors FB group

[SurvivingInjustice]

Hey all you Lovely and strong peeps!

it’s just me here… Juanita A. 😁 trying to see if I can navigate this place.  Altho Iv filled out what I thought was my drug history,well I don’t know where it went and now my hands and fingers are too numb to retype it all. So i suppose I’ll be back shortly!  Love you all!   I pray this works out for us all as I miss not being able to jump on fb and reading. But we shall see.  Thanks for all the hard work you all are doing to help us. 

 

Edited February 14, 2022 by ChessieCat
de-italicised

[AdriaticSea]

19 hours ago, BeyondGabapentinoids said:

It has come to my attention that files from my Lyrica Survivors group are being shared with other Gabapentin and Lyrica groups. THIS IS NOT ALLOWED. 

I have shared my files solely with Surviving Antidepressants to have access while I am building the website. Please respect all my hard work and don't share my files. This is so disrespectful. 

The Spanish pharmacist I told you about couldn't join the group before going on hiatus. Can I share the files with her, please? What about other information that has been posted in the group, like scientific articles, videos, the interview to Mark Horowitz...? I was planning to put all the links together in a Word Document. If you don't want me to share the info, could at least tell me what sources did you use to write them? Thanks a lot!!

[JeaneenS]

Hi to lovetobefree and survivingjustice and anyone else reading this.

Yes hopefully navigating this will become second nature. My ability to absorb new information is not what it once was.

[Altostrata]

22 hours ago, LizaB said:

Just so you guys know, some of your emails are being displayed for everyone on this site to see. I’ve notified a few of you, but thought if post here too. 

If you do not want your email displayed, go to Account, Account settings, Edit profile and then remove your email and save. 

 

You must mean e-mail addresses that on the the member's profile? We don't display any e-mails here on this site.

 

Each member can choose whether they want their e-mail address to be public. If you don't want it to be public, change your Settings (in menu under your name at the top right of every page).

[Altostrata]

On 2/10/2022 at 11:16 AM, AdriaticSea said:

Mar C has joined.

 

Uh oh!! do I really have to list all the medications I've been on since I was 22 years old? (now I'm 46) I don't remember most of them, I will have to look for 'names of drugs that end up in -ine or -in' or something like that.

Anyway, happy to be here, I'll let you know how it goes with the Spanish pharmacist and the tweets analysis project, that it's taking me ages to finish.

See ya!!

 

No, just the most recent ones, maybe in the last 3 years? Also when you started on psychiatric drugs. If necessary, we might ask for more detail later.

[MerryJayneFriday]

@JeaneenS

Hey welcome aboard!!!  I joke all the time about having a Teflon brain now,  nothing sticks lol.  We all be learning together ❤ 

MJF

[JeaneenS]

Thanks. Going to require some study for me.  One day at a time.

 

Edited February 15, 2022 by ChessieCat
unbolded

[Aussieblue]

Hi I have a question regarding email. I’ve created a separate email account as a means to receive notifications. If I remove the email account in settings will I still receive notifications from the Lyrica Survivors group?  Thank you. 

[ChessieCat]

The email which you have provided here on SA has nothing to do with the FB group.

[Aussieblue]

1 hour ago, ChessieCat said:

The email which you have provided here on SA has nothing to do with the FB group.

Sorry didn’t make myself clear. If I remove my email address from my profile will I still receive notifications from SA pertaining to the members who have transitioned over to SA from the FB group?  Thank you. 

[ChessieCat]

5 minutes ago, Aussieblue said:

Sorry didn’t make myself clear. If I remove my email address from my profile will I still receive notifications from SA pertaining to the members who have transitioned over to SA from the FB group?  Thank you. 

 

When you join you provide an email address which is only visible to staff.  This is the one to which notifications are sent if you select that option.

 

The "other" email address is optional and is in your Profile under the heading How to Contact Me and can be seen by everyone if you filled that in.  If you completed that you are able to remove it without affecting the email that you signed up with.  The Edit Profile is above the See My Activity on the right hand side of your Profile page.

 

I hope that makes sense.

[ChessieCat]

Please remember to check out this topic for new posts:

 

fb-lyrica-survivors-general-chat-topic

 

Especially see this post:

 

 

[Df1979]

On 2/13/2022 at 3:28 PM, BeyondGabapentinoids said:

It has come to my attention that files from my Lyrica Survivors group are being shared with other Gabapentin and Lyrica groups. THIS IS NOT ALLOWED. 

I have shared my files solely with Surviving Antidepressants to have access while I am building the website. Please respect all my hard work and don't share my files. This is so disrespectful. 

So sorry!  Did you know you posted your files on the internet?  They are still there.  You might want to take them down.  

[Lovetobefree]

On 2/14/2022 at 9:21 PM, JeaneenS said:

Hi to lovetobefree and survivingjustice and anyone else reading this.

Yes hopefully navigating this will become second nature. My ability to absorb new information is not what it once was.

I'm struggling to get to grips with this.

 

[OldDodgy]

I was intimidated and still wary but by giving a few posts a go and hoping that they were worthwhile I found that any errors I made were corrected or moved as necessary.  I think we need to patient and brave. 
e mailing a mod directly has helped me cope with a complex issue. 
OD

[Altostrata]

If you use site search in this forum (box at upper right of page) for "gabapentinoids" (no quote marks), you will see those Introductions topics so tagged. The recent ones probably belong to people from the Facebook group.

[OldDodgy]

Thanks 

OD 

[Lovetobefree]

On 2/15/2022 at 3:22 AM, MerryJayneFriday said:

@JeaneenS

Hey welcome aboard!!!  I joke all the time about having a Teflon brain now,  nothing sticks lol.  We all be learning together ❤ 

MJF

Hey Merry,

Did I do things right do you know?  I created a post/topic post yesterday by marking it a symptom and posted there re dry eye, just wondered if I did this correctly, no replies from any of our fb group 😞 so wondered if I did right. Sorry if I've put this in the wrong place too.

[OldDodgy]

I got your post ok. 
OD

[Lovetobefree]

5 minutes ago, OldDodgy said:

I got your post ok. 
OD

Thanks OD :-) Just seen your reply. Have replied.  Thank you.  Hope you are ok.  Take care 

L xx

[MerryJayneFriday]

I got you Jean

MJF

[FionaM]

On 2/16/2022 at 5:10 PM, OldDodgy said:

I was intimidated and still wary but by giving a few posts a go and hoping that they were worthwhile I found that any errors I made were corrected or moved as necessary.  I think we need to patient and brave. 
e mailing a mod directly has helped me cope with a complex issue. 
OD

Which mod should I ask for help ?

[OldDodgy]

Onmyway is very helpful 

OD

[Altostrata]

Tip about the Notifications list (from the bell icon in the top navigation bar): If you start at the bottom of your list (older posts), you can work up without the earlier notifications fading out.

 

I am sorry the software has a flaw that fades the other notifications when you click on the most recent one in the list.

[FionaM]

Hi Amy I and everyone 

Glad I have found you!

am still learning how to use this site so hope you don’t mind that I am now following you all so I can keep in touch and hopefully learn how to navigate ! 
 

Speak to you soon 😀

Fiona ( still working out how to edit my user name ) to add my surname initial.

[OldDodgy]

@Fiona

Hi 

I think click on your name, go to accounts, setting, profile and edit. 
I may be wrong !,

OldDodgy aka dxxk

[ChessieCat]

11 hours ago, Fiona said:

Hi Amy I and everyone 

Glad I have found you!

am still learning how to use this site so hope you don’t mind that I am now following you all so I can keep in touch and hopefully learn how to navigate ! 
 

Speak to you soon 😀

Fiona ( still working out how to edit my user name ) to add my surname initial.

 

11 hours ago, OldDodgy said:

@Fiona

Hi 

I think click on your name, go to accounts, setting, profile and edit. 
I may be wrong !,

OldDodgy aka dxxk

 

You are not able to edit your member name.

[OldDodgy]

Ah. Such is life but probably for good reason thanks. 
OD 

[Aussieblue]

Hi all, Michele G here from Amy’s group.  Am trying to navigate my way around. One problem I’m having is how to comment on posts. Sometimes there appears to be a comment bar, others not. If anyone would like to direct please do. Have done a search without result. Think I need a 101 course in being vaguely savvy. Cheers all. 

[ChessieCat]

I suggest that you put your FB name (first name and initial of surname) in your drug signature like I have done for Aussieblue.  <-- click on this link to go to Aussieblue's post  and look at the drug signature under the post.

 

This goes straight to your own drug signature:  Account Settings – Create or Edit a signature

 

 

Edited February 19, 2022 by ChessieCat

[ChessieCat]

26 minutes ago, Aussieblue said:

Sometimes there appears to be a comment bar, others not. If anyone would like to direct please do.

 

Q:  What device are you using to view the site?

[Frogie]

2 hours ago, Aussieblue said:

Hi all, Michele G here from Amy’s group.  Am trying to navigate my way around. One problem I’m having is how to comment on posts. Sometimes there appears to be a comment bar, others not. If anyone would like to direct please do. Have done a search without result. Think I need a 101 course in being vaguely savvy. Cheers all. 

Maybe try to do just as I have done and use the "quote" on the bottom of the response. This is what you will see, but you will be able to respond. Let me know if this works.

[LizaB]

When I make a post under my introduction is, why is barely anyone commenting?

I have been able to DM some members of the old group, but it’s a shame there is no way for all of us to connect under 1 topic heading like this. 

When I would post in the Lyrica group, a bunch of people would reply almost immediately and now I’m finding I get maybe 1 reply.
I don’t know what I’m doing wrong. What am I doing wrong? 
 

I need advice another adding another medication , but don’t quite know where to get it. I did post about it under my Intro and did get 1 reply, which I’m grateful for. 

[BeyondGabapentinoids]

3 minutes ago, LizaB said:

When I make a post under my introduction is, why is barely anyone commenting?

I have been able to DM some members of the old group, but it’s a shame there is no way for all of us to connect under 1 topic heading like this. 

When I would post in the Lyrica group, a bunch of people would reply almost immediately and now I’m finding I get maybe 1 reply.
I don’t know what I’m doing wrong. What am I doing wrong? 
 

I need advice another adding another medication , but don’t quite know where to get it. I did post about it under my Intro and did get 1 reply, which I’m grateful for. 

This is actually my intro post you are all commenting on. Chessie Cat and Altostrata set up a special chat for our group and the link is above in this thread. Here it is again. But you might want to go to home and check out the other topics if it's about a different medication. 

 

Link to Lyrica Survivors chat:

https://www.survivingantidepressants.org/topic/26568-fb-lyrica-survivors-general-chat-topic/

[LizaB]

On 2/14/2022 at 7:17 AM, Boris said:

Hi all to the new members from the FB group and welcome.

 

I am not sure where to ask this so will here as I’ve noticed a fair few members of your group mention bladder/urinary issues. Is this quite common with Lyrica? I’m starting to think that is the main culprit. Once I was off it for 3months I got my first proper windows of very minimal symptoms.

 

thanks I’m advance.

Yes. When I was tapering, it felt like I had to pee 30 times a night, when I didn’t have to. I’ve been holding at 85mg since Nov and the bladder issues subsided around Christmas. 

[LizaB]

4 minutes ago, BeyondGabapentinoids said:

This is actually my intro post you are all commenting on. Chessie Cat and Altostrata set up a special chat for our group and the link is above in this thread. Here it is again. But you might want to go to home and check out the other topics if it's about a different medication. 

 

Link to Lyrica Survivors chat:

https://www.survivingantidepressants.org/topic/26568-fb-lyrica-survivors-general-chat-topic/

Sorry about that. Thanks. Hope you are doing well.