Sjogrens World Forums

One evening, late at night, I was searching for information on Sjogren's. I found Sjogren's world. Being fearful of what I knew nothing about, I had worked myself into tears. This was in the year 2007.
Pooh answered my message of fear. She was the comfort that night.
There would be others on this site who took my hand and led the way to understanding. To this day...no other medical associations or physicians know more about Sjogren's than this site.
But Pooh was the first contact in my baby steps toward understanding.
I did not know. I wish I had known. I regret not letting her know how much her sweet specific words of comfort meant. On so many occasions.
I am sorry I have not kept in contact with all of you, who have remained steadfast and loyal to others such as me.
Kimbo

They have a link to a Facebook page.

https://www.facebook.com/erythromelalgia/reviews

If you google Erythromelalgia Warriors there also seems to be a Facebook group with that name.  I'm not on Facebook so can't properly research it myself.

Thanks, Araminta,

I did join TEA.  I don't see an interactive way to speak to members, only a place to post your own story.  I'll look again.

Elaine (AKA Carolina)

https://burningfeet.org/

This might be helpful.   It sounds as though if you become a member you can contact other members.

So sorry you're having to put up with this (as if there isn't enough to put up with).

I'm a longtime member with Sjogrens.  I recently developed a very rare condition called Erythromelalgia (yeah, and I thought Sjogrens was rare and weird).

Basically during a flare my legs and feet turn bright red and hot, swell, and burn beyond belief.

I cannot find any online interactive support groups, so I'm turning to you.  Sjogrens World was my first and best support group.

I have 13 doctors and most have never heard of erythromelalgia, and the few who have heard have no ideas for help.  I was already taking all the medications recommended for erythromelalgia both RX and OTC for my profound peripheral neuropathy.  They have no apparent effect on my erythromelalgia, or maybe my erythromelalgia would be way worse without them (hard to believe, but I have read of a patient who only had relief with an epidural!)

If you can help me in any way, let me know.

Carolina

trc62.
My husband and I have a colonoscopy every 10 years bc it's recommended. Like you, we always have good results with no bowel cancer in our families.
We have decided lately that we will not get them anymore. My in laws are 86 and 94 and they've never had one

Read about a new Book: Surviving Sjogren's: Life Beyond the Diagnosis
by Netta Wilson...

here in our book club pages...
https://sjogrensworld.org/index.php?topic=32389.0
If you read it please post a review!

Sjogrens World Staff

My name is Netta, a Sjogren's survivor, advocate and author. I stumbled onto your website and wanted to reach out to share, inform the community about my new release Surviving Sjogren's: Life Beyond the Diagnosis. This resource guide is a compilation of my own journey with SJogren's, financial resources to ease the burden and other practical lifestyle tips to help patients better manage symptoms and advocate for the care they so deserve.

Surviving Sjogren's: Life Beyond the Diagnosis
by Netta Wilson

Here is a link to the book where it is being sold at Barnes and Noble
https://www.barnesandnoble.com/w/surviving-sjogrens-netta-wilson/1147805428?ean=9798319626097

Thanks for the replies. I continue to recover and am 2 weeks post colon resection. I still feel weak at times but am eating little amounts more often and rest when needed. I can't start school next week, but thankfully I have sick leave to cover. I did notice on the post endoscopy notes that I also have a very small hiatal hernia and maybe that made me more likely to have the post endoscopy issues. I hope someday fairly soon that I will start to feel more normal and have a bit more energy. Because I do not have colon cancer in my family, I am going to utilize Cologuard as a screening tool instead of a colonoscopy for later in the year when I am due. Best wishes to all and hopefully everyone is keeping cool!

Hello everyone! Good News!

We now have a good permanent working link to join live chat. Instructions and information can be found at the Chat Live In Real Time Board.

Thank you AlienDog for getting the new link!