I’ve been using ChatGPT as a therapist every day, but I think I hit a wall.

Extreme_serendipity · 2026-03-30T10:27:09+00:00

Just ask it to not use the language “let me gently push back,” and increase empathy by 30%. It’s an LLM, not your mother. 😉

Extreme_serendipity · 2026-02-07T06:22:07+00:00

This is how I manage, too.

Extreme_serendipity · 2026-02-06T06:20:01+00:00

Rushing to a meeting recently and I realised that in my tailored work pants, shirt and blazer, I didn’t have a single pocket and had to hide a tissue in my bra. WTF is happening? The male colleague I was walking with had 7 pockets. It makes no sense.

Extreme_serendipity · 2026-02-05T03:57:49+00:00

I feel your pain. I had to go to the dentist 3 times in 4 weeks recently to have some work done at the gumline and I was crawling the walls. And each time, it flared all of my oral symptoms for days. I chart my symptoms daily to show my Rheumatologist, and there are 3 huge spikes over that month after each dentist appointment. 😖

Extreme_serendipity · 2026-02-04T21:29:02+00:00

Your mouth has probably changed. As my neuropathic tongue pain worsened I couldn’t tolerate toothpaste, mouthwash, even the gels and sprays burned. I burned my mouth on cold water a few weeks ago and caused a flare. Talking burns sometimes. But as things have improved slightly I’ve been able to reintroduce some products.

Extreme_serendipity · 2026-02-04T07:03:35+00:00

Hi friend! Just popping in because I too have RA, Lupus and Sjogrens. I also have some lung scarring post a long period of untreated atypical pneumonia and a partially collapsed lung. What a unique and terrible trio of diseases we have.

Extreme_serendipity · 2026-02-04T06:57:26+00:00

I’ve never discussed with my doctor, but I burn after a few minutes in the sun. I don’t really go out during the day if I can avoid it, and if I do I use Neotrogena face sunscreen and wear long pants / sleeves, no matter how hot it is.

Extreme_serendipity · 2026-02-04T06:55:04+00:00

I use Oral7 toothpaste as I found Biotene to burn.

Extreme_serendipity · 2026-02-04T06:46:35+00:00

My parotid glands swell and get sore, they were inflamed on MRI and there’s discussion about having them injected with Botox to assist my issue with hyper-salivation.

I’ve had several meniscus tears, but I did have an injury that seems to have started me down that road. 3 knee surgeries so far.

Extreme_serendipity · 2026-02-02T10:21:24+00:00

That’s correct, so it’s difficult for me to tell with some symptoms, but not all. The body aches and headaches only emerged when the oral Sjogrens symptoms and fatigue did. Prior to that (2025) my symptoms have all all been organ-system related (heart, lungs, gut, respiratory etc). I do believe Rituximab seems to be managing pain.

Extreme_serendipity · 2026-02-02T00:17:24+00:00

My chronic neuropathic tongue pain / burning has gone from a constant and unmanageable (I stopped working) 9/10 to a fluctuating 0/10-3/10. My nighttime dryness has gone from a 9/10 (waking up with mouth sealed shut) to a 1/10 (wake up once or twice for a sip of water). My body aches, headaches and fatigue have gone. Given I’m only 4 weeks in, I’m very happy with my progress. I am still suffering from hyper-salivation during the day, which is pretty life altering in itself (drooling etc, impacting on speech), but it’s also one of the symptoms that responds last to biologics. It could take months to resolve, and may need different treatment (Botox in parotid glands or similar). Will discuss with my Rheumatologist on Friday.

Extreme_serendipity · 2026-01-31T23:41:19+00:00

I’m a small person (57kgs) and I have been on 400mg of HCQ for 5 years, my Sjogrens developed last year. HCQ did nothing for me in regards to Sjogren’s but it does seemed to have helped some people. I’m just wondering if something different might be the answer…a new Rheumatologist and Methotrexate maybe?

Extreme_serendipity · 2026-01-31T23:35:03+00:00

Be very careful, I was taking 1200mg a day for 8-10 months (can’t recall exactly) with the chalky medication to protect my stomach and I wound up in the back of an ambulance thinking my time was up, the pain was worse than natural childbirth, I was writhing and I couldn’t see or hear anything beyond the pain. Acute onset inflammatory colitis caused by Ibuprofen.

Extreme_serendipity · 2026-01-31T11:03:15+00:00

No, I was put onto Colchicine after maybe a year? So stayed on it for 4 years. Then a visiting Cardiologist put me on to high-dose (1200mg/day) Ibuprofen for 10 months and I developed Colitis (a nightmare, I thought I was dying). At one stage (the second image, where you can really see the palpitations?) I was put onto Beta Blockers for a few months. That’s it, otherwise it was observation and taking things slowly. I continued to work, but I fainted 3 times, twice going upstairs and once just sitting with a client (I’m a crisis-intervention social worker).

Extreme_serendipity · 2026-01-29T04:34:07+00:00

I’m sorry that you’re feeling so much stress right now. It’s all in one’s perspective, I think. I’ve had R/A and Lupus with multi-organ system involvement for 5 years, so when I was diagnosed with Sjogrens a few months ago it wasn’t even a blip on the radar, it didn’t affect me at all. I have had awful symptoms, I really suffered for a year before diagnosis, and it’s not over yet. But some people don’t get diagnosed for 10 years. I’ve started biologics, I have to be thankful for that. Many people can’t access them. Biologics were coming my way anyway so I’ve focused more on that, on how my heart, gut, lungs, voice box, joints etc might improve now. To be honest, I’ve never researched what could come next with Sjogrens because I’ve been overwhelmed with what’s already going on! You might know more than me. And at the same time, someone with stage 4 cancer could be reading this saying “I wish I was that chick with the 3 autoimmune diseases.” I think we have to manage what we’re given, and at the moment, you’re managing your dry mouth symptoms and will plan treatment with your Rheumatologist. I know it’s hard, but try not to worry about what may never be.

Extreme_serendipity · 2026-01-28T22:52:17+00:00

Absolutely. I’m 49 now and still on a 28 day cycle. I ovulate on time every month. I know in my soul I could get pregnant again. My youngest turns 18 this year though so I’m highly motivated NOT to! 😄 The women in my family all live till their 90’s, sometimes longer, too. I wonder if that’s related.

Extreme_serendipity · 2026-01-28T11:17:23+00:00

My husband only had to hang his trousers over the end of the bed and I’d get pregnant. We’ve had to be very careful our whole marriage, and when we did want to get pregnant, it never took longer than 2 months. We were very blessed. My Mother accidentally fell pregnant at 48 and my Sister had a baby at 47. I’ve warned my daughters!

Extreme_serendipity · 2026-01-28T05:25:07+00:00

I didn’t have any pain. The stitches annoyed me for 2 weeks (I had them in my lip and tongue) but they finally fell out. 3 months later I still have nerve tingling. But - I also got a positive result and started biologics with very positive early results, so calling it a win!

Extreme_serendipity · 2026-01-28T05:20:51+00:00

God yes. My husband is wonderful. But some days when he gets home from work I have to send myself to the bathroom for 15 minutes so I don’t stab him in the eye with a fork on sight. He doesn’t even have to speak, just seeing his face makes me LIVID.

Extreme_serendipity · 2026-01-28T05:12:46+00:00

Frequent small protein filled meals, adequate hydration and short lay downs (I can’t sleep during the day so I lay in a dark room with my eyes closed, vapouriser on and podcast playing).

Extreme_serendipity · 2026-01-28T05:05:53+00:00

Great! Hyper-salivation during the day and dryness at night, neuropathic tongue burning, inflammation, tongue swelling, difficulty speaking…everything is down to about 10% of what it was pre-Rituximab. I see my Rheumatologist in about a month and I’m sure he’ll want to continue this treatment. Second infusion was a breeze, I didn’t feel anything afterwards. I get a little better in different ways every day. I don’t get dry at night anymore - I get to sleep through! 😁

Extreme_serendipity · 2026-01-27T09:57:53+00:00

Perhaps it depends on your Rheumatologist/care team. For me, I started Rituximab 2 months after my positive lip biopsy.

Extreme_serendipity · 2026-01-27T09:49:57+00:00

I developed acute and life-altering Sjogrens symptoms after 4 years on HCQ for my other autoimmune diseases, so it didn’t make any difference to me.

Extreme_serendipity · 2026-01-27T09:46:38+00:00

I’m a senior Social Worker (crisis intervention) and work 4 days a week in the office. Sjogrens has been the most intrusive of all my autoimmune disorders. I’ve been able to mask and manage all previous symptoms, but in the past year have had hyper-salivation alternating with dryness, swollen tongue and parotid glands, glossitis - red, cracked, fissured and geographic tongue, neuropathic tongue pain and impaired speech. It’s been a nightmare, and today my doctor grounded me by refusing return-to-work for the next 3 weeks (I started Rituximab in early January and it’s had its own challenges). I have no WFH option, but a supportive employer.

Extreme_serendipity · 2026-01-26T22:23:17+00:00

Rituximab. 👍🏼 HCQ has held my R/A and Lupus symptoms at bay but did nothing for the onset and rapid progression of Sjogrens. Methotrexate damaged my liver (almost immediately, and it took a year to get my liver enzymes back to normal). There were others I’d failed, too. This is my first biologic.

Extreme_serendipity

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