BeyondGabapentinoids: Transitioning Members from Lyrica Survivors FB group

[BeyondGabapentinoids]

 

Welcome to the new FB members from SA staff.

 

Please read through ALL of the following important information:

 

NAMES:  Please only use your or another member's full first name and the initial/s of you last name even if the name you were using is a pseudonym.  Thank you.

 

Please click on the following link: 

 

Information about SA

 

How to Navigate

 

Link to general chat topic which is visible to logged in SA members only:

 

fb-lyrica-survivors-general-chat-topic

 

 

IMPORTANT NOTICE to all FB members:

 

On 2/14/2022 at 10:28 AM, 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. 

 

 

EMAIL ADDRESS:

  

On 2/14/2022 at 10:53 AM, LizaB said:

Just so you guys know, some of your emails are being display 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. 

 

 

________________________________________

 

Hi there! I wanted members of my Lyrica Survivors group to see a familiar face here, aka Amy I from FB, also an alias. 🙂

 

Feel free to reach out to the moderator that was in our group, now known as, MerryJayneFriday. She can help with any specific questions about Lyrica or Gabapentin... Though the entire team here is excellent and can also help! I will be taking a break until June, but wanted to be here as we transition members over this next week. Welcome to SA! 

 

 

 

 

Edited February 15, 2022 by ChessieCat
edited name for anonymity/added link to info

[MerryJayneFriday]

Thanks Beyond so much!  Glad you are here!

[BeyondGabapentinoids]

Yay! Thanks for coming over. Clandy1984 is a WEALTH of information... An expert within our previous group. ♥️🙂

[Kayha]

Hey! I'm Jenn M from the FB group! Glad to see some familiar faces! 

 

Edited February 9, 2022 by ChessieCat
edited name for anonymity

[Quilter1011]

My first post here! Still need to fill out my signature. Nice to see some familiar people over here!

It's Catherine M B from FB. 

 

Edited February 9, 2022 by ChessieCat
edited name for anonymity

[WizzyWinkles3]

I think i'm here😂

Ruby S , so glad we have a non Facebooky hideout to chat in😁

[OldDodgy]

Hi Beyond

Gosh it’s complicated. I am sure I will make a real fool of myself in here. 
Going over old trauma to introduce myself was a battle well fought. 
Accolades to the folk that helped me off 3 drugs kept to a minimum to share your blushes. 
OD 

[BeyondGabapentinoids]

Another incredible source of information in OldDodgy! Thank you so much for persevering and joining a new space with your self professed limited computer skills. We're all here to help each other so reach out with questions! 

[AdriaticSea]

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!!

[Nikkilxxxv]

On 2/9/2022 at 5:03 PM, BeyondGabapentinoids said:

Hi there! I wanted members of my Lyrica Survivors group to see a familiar face here, aka Amy I from FB, also an alias. 🙂

 Feel free to reach out to the moderator that was in our group, now known as, MerryJayneFriday. She can help with any specific questions about Lyrica or Gabapentin... Though the entire team here is excellent and can also help! I will be taking a break until June, but wanted to be here as we transition members over this next week. Welcome to SA! 

 

 

I found my fam , yay I was worried as I don't use websites often. Hi everyone. 

[LoriT]

Well here we are! 

[Clancy]

Hey Everyone, 

Laura here, from Lyrica survivors FB group.

I did try to make a post in the introduction forum, but I think I’ve made mistakes, so perhaps it didn’t get posted. It’s all quite complicated isn’t it? I didn’t realise we had to summarise our medication histories in our signature, so I didn’t do that.

 

I’ll have another go.

Love you all, old friends and new!

[BeyondGabapentinoids]

It is a lot more complicated, but hopefully we will all get the hang of it here soon. 

[OldDodgy]

Can you help Amanda with the security check?  I found it tricky too

 OldD 

[ChessieCat]

Hi everyone and welcome to SA,

 

Yes, it can be a bit overwhelming when you first arrive here, especially if you have never used a forum before.

 

I will provide some information which might help with the transition.

 

SA prefers members to remain anonymous.  SA is a public site and can be viewed by non-members.  If you provide the name that you have been using in FB, I strongly encourage you to only use your full first name and the initial/s of you last name even if the name you were using is a pseudonym.  This will eliminate confusion for the staff who will not know that it is not a real name.  And quite often people use the same pseudonym elsewhere on the internet when registering on other sites.

 

If your first post is made in a topic (eg this current one) the staff will issue you with a 0 point friendly warning requesting that you create an Introduction topic.

 

Each member has ONE Introduction topic.  Your own Introduction topic is the best place to ask questions specific to your own situation and journal your progress.  This keeps your history in one place and means you do not have to repeat your story.

 

The Introduction topic you create will go into a moderation queue and be responded to by a staff member and then the topic will be approved.  The first few posts a new member makes need to be approved by staff.

 

Instructions:  Please start a topic about yourself in this forum

 

Link to forum:  Start New Topic is at the top right of the screen:  introductions-and-updates

 

SA would like members who have already stopped all drugs to create an Introduction topic because part of SA's mission is to educate the medical profession and their Introduction topics are a case study which they can use.  See:

 

On 5/15/2011 at 5:22 AM, Altostrata said:

This site is also a research project. The personal stories on this site are documentation of an iatrogenic condition -- suffering caused by medical treatment -- that is almost always ignored, misdiagnosed, or denied by the medical establishment. Given the widespread prescription of antidepressants to tens of millions of people worldwide, withdrawal syndrome probably affects hundreds of thousands if not millions -- including newborns and children.

Antidepressant withdrawal syndrome can last weeks, months, or years. It can be distressing, debilitating, or even disabling. It may be adding to an increase in what is termed disabling mental illness.

With our documentation of antidepressant withdrawal syndrome, we hope to educate the medical establishment about this problem. Case studies are essential; they are evidence understood by doctors, the psychiatric industry, and government regulatory agencies. The have already informed numerous articles in major publications and scientific papers.

Our hope is, eventually, antidepressants and other psychiatric drugs will be prescribed rarely, and only in cases of extremely severe mental illness after less invasive treatments have been tried.

 

When you join you provide your drug history.  This is Confidential and only visible to staff.

 

SA asks that you create a SIMPLE drug signature, which will appear below every post you make and allows your drug history to be seen at a glance.  Please remember to update it whenever you make a change.

 

So that other FB members can easily see who you are, I suggest that you include your abbreviated FB name (ie only first name and initial/s) in your drug signature so that whenever you post the other FB members will be able to easily see who you are.

 

Instructions:  Withdrawal History Signature

 

 

Edited February 11, 2022 by ChessieCat

[OldDodgy]

Thank you 

OD 

[ChessieCat]

I have created a chat topic for the FBers (link has been added to Post #1 of this current topic).

 

Link to general chat topic which is visible to logged in SA members only:

 

fb-lyrica-survivors-general-chat-topic

[LizaB]

Hi Everyone,

 

So glad others are moving over here. I still do not totally understand how this site works or how we can find each other’s posts and comments, but maybe all those posts will appear here.  

[ChessieCat]

4 minutes ago, LizaB said:

but maybe all those posts will appear here.

 

No they won't appear here.

 

Please see the links I have recently added to the top Post #1 with information about SA and how it works.

 

 

[LizaB]

1 minute ago, ChessieCat said:

 

No they won't appear here.

 

Please see the links I have recently added to the top Post #1 with information about SA and how it works.

 

 

Thanks. It’s quite different that what I’m used to, so it may take a while to catch on. 

[ChessieCat]

I have noticed that some of the FBers are not very familiar with using a forum.  It can be overwhelming when you first get here.  I had never used a forum before so I do understand how confusing it can be.

 

I imagine that there would be some of you who are members of another forum so would have more knowledge about how they work.

 

It would be really good if the members who can provide assistance to the members who are struggling with using the site.  This sort of discussion would be best made in this topic:

 

fb-lyrica-survivors-general-chat-topic

[Altostrata]

Hello, everybody gabapentinoid. Good to see you here!

 

This is a forum site. It has threads like Facebook but is laid out differently. It's actually a lot simpler than Facebook.

 

This Home page is like a table of contents. You can see all the forums listed. To get to the Home page, click on the Home or Forums link at the top left of every page.

 

Forums contain topics. People get to know each other in the Introductions forum. Most members have an Introductions topic, which contains their history. You can follow the member's topic by clicking Follow at the upper right of the topic.

 

The moderators keep an eye on the Introductions forum, where people post questions about their particular situations. The rest of the site is more free-ranging -- but in general, we ask you always stay on-topic in your posts.

[OldDodgy]

Hi to learn more I am going to use Sa search engine regarding your issues. 
perhaps you will try that. 
For info only as I must not give advice -

I still get sore muscles off GABAs when I am anxious and tremors. 
I have also found getting my B12 Ferritin and folate into a decent range has helped most leg symptoms. 
chin up 

OD
 

[ChessieCat]

22 minutes ago, OldDodgy said:

Hi to learn more I am going to use Sa search engine regarding your issues. 

 

Another way to search for things on SA is to use an internet search engine and add site:survivingantidepressants.org to the search term.

 

Also note that when you type in the SA search box (top right of the screen) you can choose from the drop down where you what to search.

[LizaB]

17 hours ago, Altostrata said:

Hello, everybody gabapentinoid. Good to see you here!

 

This is a forum site. It has threads like Facebook but is laid out differently. It's actually a lot simpler than Facebook.

 

This Home page is like a table of contents. You can see all the forums listed. To get to the Home page, click on the Home or Forums link at the top left of every page.

 

Forums contain topics. People get to know each other in the Introductions forum. Most members have an Introductions topic, which contains their history. You can follow the member's topic by clicking Follow at the upper right of the topic.

 

The moderators keep an eye on the Introductions forum, where people post questions about their particular situations. The rest of the site is more free-ranging -- but in general, we ask you always stay on-topic in your posts.

Thanks 

[LizaB]

10 hours ago, ChessieCat said:

 

Another way to search for things on SA is to use an internet search engine and add site:survivingantidepressants.org to the search term.

 

Also note that when you type in the SA search box (top right of the screen) you can choose from the drop down where you what to search.

How can you search for someone by their username, if they haven’t posted anything yet? 

[Lovetobefree]

Hey there,

 

Thank you Beyond for the welcome.

 

Pleased to see so many familiars here

 

Hoping i'll get to grips with this new site and tapering soon

 

[Altostrata]

I hope we do see the gaba people posting in this topic!

 

On Facebook, everybody participates in the most recent thread, which can get very mixed up. We've got more room here and the site is organized for information retrieval. Instead of people repeating good info over and over to new people, we collect all that wisdom into specific topics. This still has its flaws, but you should be able to find that magnesium topic whenever you want.

 

The individual Introductions topics are informal, patient-authored "case reports". We are deliberately collecting these -- identities masked by pseudonyms -- to show to doctors. This has resulted in a half-dozen journal articles based on the narratives in the Introductions topics.

 

Site background information, policy explanations, and administrator announcements are in the Read This First forum.

[JeaneenS]

Hi everyone and especially folks who have just come from Lyrica survivors.

I am feeling a little lost but want to muddle through to be part of this site since I gained so much from the FB group founded by Amy.  Part of what has happened to me after six years on Lyrica is cognitive.  My short term memory and word finding greatly effected.  I will have to make a rough draft list of all the meds I have been tried on these past 6 years.  My overarching health problem is postherpetic neuralgia from having had shingles in December 2015.

[ChessieCat]

@JeaneenS

The above post contains important information that the staff who will be assisting you should have readily available.  Please copy the above post you made and paste it as a reply in your Introduction topic.  That way your history will be in one place.  Thank you.

 

Click on the link below to go to your Introduction topic (currently it is awaiting a response and approval by a moderator - someone will do that as soon as they can).

 

jeaneens-tapering-off-lyrica

[BeyondGabapentinoids]

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. 

[LizaB]

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. 

[OldDodgy]

Agree Beyond, this is totally unacceptable and you have every right to be seriously annoyed. OD 

[Boris]

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.

[OldDodgy]

Boris,

in the uk urologists are using pregabalin for all sorts of pelvic pain and in men for chronic prostatitis-completely without foundation in my opinion. I am very glad that you recognised the adverse effects and got off it.  
I took pregabalin for 14 years and sympathise. In retrospect I think it reduced the burning of chronic prostatitis but at a great cost to my general health. 
Best wishes 

OldDodgy

[Lovetobefree]

16 hours ago, JeaneenS said:

Hi everyone and especially folks who have just come from Lyrica survivors.

I am feeling a little lost but want to muddle through to be part of this site since I gained so much from the FB group founded by Amy.  Part of what has happened to me after six years on Lyrica is cognitive.  My short term memory and word finding greatly effected.  I will have to make a rough draft list of all the meds I have been tried on these past 6 years.  My overarching health problem is postherpetic neuralgia from having had shingles in December 2015.

Hi Jeaneen,

I've come over from Amy's Lyrica fb group.  I'm still trying to navigate this SA forum, hopefully in time it will be like riding a bike!