r/NeuroSjogrens

I'm suspecting SFN because the more I researched it the more everything makes sense. I know for a fact I have hyperPOTS but the cardiologist only diagnosed POTS.

I tested positive for SSA and I am still waiting on lip biopsy and the blood work that the rheumatologist did because my primary doctor did my first autoimmune panel. But I don't see the rheumatologist again until October 12 for results🫠

I've gotten worse over the last few months and I can't tolerate anything anymore. Migraines back to back. Constant stabbing pain in my head and other neurological issues. My POTS has significantly gotten worse too. Any change in movement makes me feel terrible.

I'm on Carvedilol per the cardiologists recommendation. But that's only touching the tip of the iceberg. I feel like I'm still in constant fight or flight mode and I am at my wits end. I don't know what to do anymore.

I'm hoping that someone here may have something similar to me symptom wise and tell me what I can do or suggest to my doctors. I'm set to see a THIRD neurologist this year because the last two have been absolute trash. Nobody has gotten to the root of the problem.

NO ONE! the rheumatologist is one of the only ones in my area and he flat out told me that Sjogren's doesn't affect the nervous system. Other folks online told me to find another rheum but I'm in south Texas and I can't travel from how sick I am. I also don't work currently so no money for travel either.

Someone with negative antibodies but a positive biopsy and a very heavy burden of symptoms who is on treatment with IVIG or rituximab and is improving 🙏

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!!