1. < Autoimmune Diseases

Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I'm in pain most days and would like to have discussions.

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cmd | @cmd | Dec 19, 2022
In reply to @lucyhipp "This has been a journey. went from 146 lbs. in January 2022 to a current wt...." + (show)
@lucyhipp

This has been a journey. went from 146 lbs. in January 2022 to a current wt. of 112. This started with Endoscopy and colonoscopy showing Gastroparesis, gastritis and a SIBO infection. My GI tested me for endocrine tumors which were negative. PCP group was just sitting by with no idea except that I came to the ER too often. GI suggested I get a long term + ANA investigated. I did and some labs were abnormal. I had no idea that my Sjogren ANT was negative. Meanwhile, after several falls and night sweats with a crazy TSH going from5, to 15 to 34, I go to a local rehab hospital with dehydration and weakness. The rheumatologist call me to DX me with Sjogren. I am placed on Plaquenil and for unmentioned reasons I change rheumatology. This group is concerned about how frail I am and my neurological symptoms. EMG shows no big deal except a bad R shoulder, now known to be calcific tendononis. Three ER visits later for eye infections, I off Plaquenil and my sight is decreased quite a bit. I rely upon Sjogren foundation and find a rheumatologist at U. OF Pa. Currently, I am scheduled for a lip biopsy on Dec. 29th. I have had home OT, PT and speech therapy. Pain management manages my pain. My depression is quite awful. I wish I had the money to go to Mayo Clinic where a team works together. I have been a nurse since 1974 and that was what I was taught. I would appreciate feedback on this story and my illness. My. name is simply Lucy.

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I’m so deeply sorry. How is your sleep?

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3 replies
lucyhipp | @lucyhipp | Dec 19, 2022
In reply to @rwinney "@lucyhipp Hello Lucy, welcome. I'm sorry for all of your struggles. Fighting depression from constant health..." + (show)
@rwinney

@lucyhipp Hello Lucy, welcome. I'm sorry for all of your struggles. Fighting depression from constant health problems is awful. Do you, or have you worked with a psychologist or cognitive behavioral therapist?

You mention wanting to go to Mayo Clinic and work with a team that works together. That was my fantasy at one point also. Have you considered applying? It can't hurt. Mayo does accept many insurances including medicare. Here is a link with details:

Insurance types accepted at Mayo Clinic-
- https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance

And here is a link in case you want to apply or even only ask questions:

Mayo Clinic Application-

- http://mayocl.in/1mtmR63

My experience at Mayo has been with their Pain Management Rehabilitation Center. It's an all inclusive 3 week rehabilitation program that helps folks get stronger physically, emotionally, behaviorally, and works at reducing or eliminating chemicals. That's the way I ended up working with a Mayo team.

What are some of the ways you currently manage depression? Do you have a good support system of friends and family?

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My therapist is excellent. She will return at end of December from LOA for surgery. She had her thyroid removed due to cancer. She told me only because it is the same CA that I had in my thyroid. Otherwise, I attend NAMI support group every Thursday. My family tries but do not understand my issues with depression.

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lucyhipp | @lucyhipp | Dec 19, 2022
In reply to @cmd "I’m so deeply sorry. How is your sleep?" + (show)
@cmd

I’m so deeply sorry. How is your sleep?

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Decent because I take several meds that sedate. Neurontin was the most effective because I no longer wake up with arm pain.

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1 reply
Langold | @rarelybees2889 | Dec 19, 2022

I am glad that they are now calling it "Sjogren's Disease" and not Syndrome, which never made sense...
As we all know this is not an easy thing to have...

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1 reply
susanh824 | @susanh824 | Dec 20, 2022

Where is your pain? Does your doctor have you on any meds for this?

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1 reply
cmd | @cmd | Dec 20, 2022
In reply to @cmd "I’m so deeply sorry. How is your sleep?" + (show)
@cmd

I’m so deeply sorry. How is your sleep?

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How do you sleep?

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cmd | @cmd | Dec 20, 2022
In reply to @lucyhipp "Decent because I take several meds that sedate. Neurontin was the most effective because I no..." + (show)
@lucyhipp

Decent because I take several meds that sedate. Neurontin was the most effective because I no longer wake up with arm pain.

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I sent you another message, but you answered it already, thanks. Please disregard the last msg.

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lucyhipp | @lucyhipp | Dec 20, 2022

some nights I sleep well and others I don't

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lucyhipp | @lucyhipp | Dec 20, 2022
In reply to @rarelybees2889 "I am glad that they are now calling it "Sjogren's Disease" and not Syndrome, which never..." + (show)
@rarelybees2889

I am glad that they are now calling it "Sjogren's Disease" and not Syndrome, which never made sense...
As we all know this is not an easy thing to have...

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It is awful. I. am not be treated. Do you have this and how are you treated?

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1 reply
Langold | @rarelybees2889 | Dec 26, 2022
In reply to @susanh824 "Where is your pain? Does your doctor have you on any meds for this?" + (show)
@susanh824

Where is your pain? Does your doctor have you on any meds for this?

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yes but the drugs used for Sjogrens aren't the best as there is so little research into autoimmune diseases..

Do you have it too!?

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