u/Alright_Alwrite

For context, I’m 37, F.

About 3.5 years ago, I was diagnosed with Sjogren’s. That’s after a decade of digging to find out why I had constant struggles with fatigue and brain fog as well as PMDD. Doctors kept telling me it was depression.

Once I was diagnosed with Sjogren’s, they gave me hydroxychloroquine. I was able to travel/backpack Southeast Asia for a full year, moving every few days (with a couple months break here and there), being super active and leading a demanding lifestyle, hiking, surfing, scuba diving, being in the sun, lugging around a backpack.

My last stop on my trip was to Japan. I got my first migraine there, so badly that I threw up. When I landed back home in the Midwest (Missouri), I experienced a few terrifying episodes of extreme muscle and body pain, almost like what you would experience with a bad flu, with exception of the chills.
I went back to the doctor, who diagnosed me with Fibromyalgia. The doctor also, because of the migraines, referred me to a neurologist, who ultimately performed a skin punch biopsy and confirmed a diagnosis of Small Fiber Neuropathy. I was put on Cymbalta, tried pregabalin for pain and eventually went off of pregabalin (didn’t do much for me and had side effects).
Oddly enough, we retested my blood for Sjogren’s marker….negative. They said the hydroxychloroquine helped it calm down.

But my symptoms keep getting worse.
Each morning I wake up with my joints and muscles aching (not as bad as the flares though).

I don’t sleep well at night, and often times my mornings feel like I’m post-concussive, literally.

I have brain fog throughout the day.

Neck and shoulder pain. Joint pain.

I have to be extremely careful with my energy expenditure. On the days I feel well enough, I get to play pickleball, but that can backfire and cause me to be out for days on end.

My migraines last for 4 days, fluctuating in their severity and prominence, and have caused me to miss a significant amount of work. I actually got laid off. I’ve done 2 rounds of Botox for migraines (you can get reimbursed by Botox btw!)

Sometimes I get dehydration flares where I just feel insatiably exhausted and like I’m reaching for water in the desert.

My Small Fiber Neuropathy symptoms feel minimal as far as tingling and burning goes. That’s usually just when I’m in a certain position too long, stand up or move too quickly, or go from being cold into hot water.

How did all of this suddenly get worse?? Was it stress of travel? Infections I got abroad? I don’t understand, and can’t believe nothing is helping.

I also don’t understand how my Sjogren’s went into “remission” but my symptoms are now worse than ever.

Thank you**!**

P.s. I’ve been to most specialists. Infectious disease. Allergist. Rheumatologist. Neurologist. Migraine Neurologist. Endocrinologist. I had a brain MRI.

I thought it would be interesting to post my suspected triggers or contributions to my disorders and see if anyone can relate and if there are any common threads amongst us.

If you respond, please use following format to start your post for easy scan for other readers seeking help and info:

“ Illness/illnesses |
succinct symptoms |
suspected causes
any further info “

I’ll start with mine:

Syndrome/Disorder: Small Fiber Neuropathy, Sjogren’s, Fibromyalgia, Chronic Migraines

Symptoms: fatigue, brain fog, chronic migraines, muscle/joint pain, weakness and malaise, dry mouth, debilitating flares

Suspects: viruses, vaccines, & vagabonding (dang, maybe I’ll write a book 😂)

Details:

Suspected triggers:
-Repeated use of yearly antibiotics for recurring Strep throat as a kid with no rehabilitation of gut micro biome
-mental/emotional trauma as teen
-several severe virus illnesses
-head and neck injury at around 33 years old
-COVID
-Covid vaccines (had a severe reaction to Moderna that feels a hell of a lot like my body symptoms now during flares 😡😤😭
-viruses contracted in SE Asia
-rabies prevention vaccine before leaving US
-a 1 year period of extreme activity during travel/stress

I had brain fog and fatigue since around college, as well as IBS. I got worse or I actually started questioning it more about 6 years later and spent the next decade trying to find answers.

At 34 I had symptoms of brain fog, fatigue, dry eyes and mouth. I was diagnosed with Sjogren’s and went on Hydroxychloroquine. I traveled to SE Asia for a year and backpacked 6 different countries. I didn’t know that would possibly be the last time I could be that active.
My last country on my way home was Japan. One of my final days I got a migraine for the first time and threw up in a Japanese grocery store bathroom.

Made it home to the U.S.
Smoked weed. BOOM. Terrible body pain, all over. It’s like my back muscles were becoming shorter and my whole body ached and was on fire.
Another day, it rained. BOOM. Same flare. I remember sitting in a chair with my arms clutching the side bawling because I was so terrified that I had MS or something lifelong and debilitating. It turns out, 2 years later, this IS debilitating.
I got referred to a Neurologist for migraines and they tested me for small fiber neuropathy which came back positive. “Horrible, horrible disease,” the doctor said.

Over the past two years, I’ve experienced increasing episodes of migraines with aura that can last 3–6 days, widespread muscle and joint pain, waking up feeling like the Tin Man, chronic neck pain, brain fog, flu-like malaise without the fever/chills, very limited energy, and this awful neurological feeling I can only describe as “waking up with post concussion syndrome without having a concussion.”

Some days I can still get moving and feel surprisingly okay. Other days my body just says absolutely not. And sometimes doing a lot seems to come with a price a day or two later.

I’m posting because I’d really like to hear from people with Sjögren’s, SFN, chronic migraine, fibromyalgia, dysautonomia/ME-CFS-type symptoms, or a similar combination.

Did your illness begin or substantially worsen after a particular event? Most importantly, what has actually improved your FUNCTION, not just taken the edge off the pain?

Medications? IVIG or other immunotherapy? Migraine treatment? Sleep treatment? Pacing? Hormonal treatment? Treating an infection or deficiency? Something unexpected?
I’m especially interested in anyone who went from feeling significantly debilitated to getting a meaningful amount of their energy and life back.

Thank you!!

I am thinking there must be people out there who relate, and I’d love to hear from anyone who has found a helpful tool to change this thinking.

Internally I’m optimistic and am a dreamer, but my mind fights against me.

I think I’ve been stuck in a state of disallowing joy and peace for myself for decades, lying to myself and convincing myself it was protecting me, or that I’ve been being “responsible”.

For instance, saving money instead of allowing joyful experiences that cost money once I already had enough saved. Or, being stuck in a constant rumination (I do mean near-constant,) like there’s a little person on my shoulder telling myself I’m running out of time, asking me questions like, “who are you? Why aren’t you further? Are you spending your time wisely? What do you want? Are you being selfish? What job are you supposed to have? Where should you live?”

Also, in instances, doing the “wiser/smarter” thing in an effort to “create safety”, such as rather than spending the extra money to live alone, convincing myself it’s better to get a roommate so that I can allocate those funds to “being happy”, traveling, living elsewhere etc.

I’ve been doing it for so long, and I don’t know where I got that mode from, that I have a really hard time getting out of it. I’ve done remarkable things in my life and had a lot of experiences but still beat myself up on a daily basis with worry and judgement and fear, and even did so during these remarkable experiences. How does one stop this? What’s up with this?

I also don’t fit the 9-5p life, and I know I’m a creative person who thrives having new experiences. However, if you ask me what I want to do for a living, I can’t exactly tell you. I feel like even if I did know, I suffer from pretty intense ADHD and several autoimmune/physical pain disorders, and have a lack of follow through, so it makes me feel caught in an endless loop.

I do believe in thought processes and meditations and manifestations and occasionally am able to temporarily tap into a higher vibe, attracting things. I believe it’s when I let go of control, which is what we are taught exactly not to do. So, my mind goes back to that mode of operating.

I thought I’d reach out and see if anyone feels inspired to respond, thank you!

I have two Southwest Airlines LUV Vouchers. The first is for $200. The other is for $387. These vouchers are for \*traveling by\* July 2nd, 2026. This means you can be boarding your flight all the way up to 11:59pm on July 2nd.

You are welcome to buy one, or both.

They are name free, hassle free numbers with security codes that you apply directly to your checkout cart and it will reduce what you owe (or, depending on your flight cost, completely cover your flight base fare, with exception to taxes/fees).

Why I’m selling: I could travel but would prefer to travel later, so if someone is planning travel and would like to get an easy discount on their flights, this is a win-win.

Comment on this post if interested. DMs/PMs without comments on post will be ignored.

Thank you!

I have two Southwest Airlines LUV Vouchers. The first is for $200. The other is for $387. These vouchers are for *traveling by* July 2nd, 2026. This means you can be boarding your flight all the way up to 11:59pm on July 2nd.

You are welcome to buy one, or both.

They are name free, hassle free numbers with security codes that you apply directly to your checkout cart and it will reduce what you owe (or, depending on your flight cost, completely cover your flight base fare, with exception to taxes/fees).

Why I’m selling: I could travel but would prefer to travel later, so if someone is planning travel and would like to get an easy discount on their flights, this is a win-win.

Comment on this post if interested. DMs/PMs will be ignored.

Thank you!