Severe Fatigue, Joint & Nerve Pain, Migraines: What Is This?

By Shawn Elaine Anderson | Last updated 03/25

Suffer from severe fatigue, severe joint and nerve pain, migraines and muscle weakness? Do doctors keep telling you “nothing is wrong”? Well, something IS.

I fell very, very ill in the fall of 2018 and had to quit my full-time work.

I was in HR related company jobs for 30 years, age 21 to 51.

I was in bed a lot of 2019. I did a TON of research at that time.

I, in essence, diagnosed myself with Sjogren’s (pronounced showgrens). I am like, This is what must be going on with me.

What else on God’s green earth could be making me feel like I was ready for an early grave?

I remember lying in bed when I was so sick in the fall of 2019, and was like, “Hmmm, every time I get so sick from exhaustion head to toe and low grade fever and joint pain, I also get sores on my tongue.”

So I research “joint pain and sores on tongue” and I get Sjogren’s.

I am like, Well, what is this funky disease, and I hit all the symptom checkboxes for it.

Yep, that’s ME!! Rheumatologist literally gave me a look as if I was deranged.

My husband is in all of my doctor meetings. He was very mad with how much lack of respect the doctor treated me with.

And I tested negative for all other autoimmune diseases, twice: one time in January 2019 and then the second time in December 2019.

I was scoffed at by the rheumatologist when I said I think I have Sjogren’s, and was still sent away as being just fine.

My husband and I both had PCPs and all our care at Mayo Clinic since 2014.

I had the same PCP from 1/1/2015 to 12/31/2022. She saw my health decline over those years, with the most drastic dropoff in the fall of 2018.

What she saw in front of herself now was a tired, fatigued, unemployed Shawn with little to no energy, completely defeated and achy individual complaining of horrible diarrhea and migraines and rashes all over her body.

But ALL formal tests for EVERYTHING? Perfect.

All of my referrals at Mayo were specialists internal to Mayo: rheumatologist, cardiologist, dermatologist. psychiatrist, endocrinologist and gastroenterologist.

I was sent away by all as just fine by all of them — in terms of the tests they all ran on me were in the normal limits. How could this be?

Must be because Sjogren’s is so easy to diagnose?

Grrrrr….Yes, I am being sarcastic. My PCP never gave up on me.

Even though it was during COVID lockdowns, she kept the referrals going.

I was so sick in bed with blood pressure at 80/50, HR 100-plus, losing weight, coughing up green stuff.

She prescribed an antibiotic; it didn’t kick anything at all.

My husband worked for a small company and they had horrible health insurance.

My bill was almost $6,000 within one year! And yet I am told I am just 100% healthy?

Breakthrough Diagnosis: Finally

I finally saw Dr. Brent Goodman, neurologist, at Mayo in May of 2020.

I was diagnosed with Sjogren’s via lip biopsy, and central regional pain syndrome/reflex sympathetic dystrophy via exam; small fiber neuropathy via skin punch biopsy; and dysautonomia via tilt table test to include postural orthostatic tachycardia syndrome, neurogenic hypotension and hyperhidrosis.

My only blood work that showed positive was IgG.

Rheum ran the IgA, IgG-IgM assay … and that came out just fine in range …. but Dr. Goodman ran the isolated IgG test and it was elevated.

So I wasn’t misdiagnosed…it just took too damn long to diagnose my Sjogren’s.

My story is NOT a one-off. Anyone who is sero-negative will tell you, it can be a long and arduous journey.

Given the overall ignorance of the medical community about Sjogren’s — and the world at large — and given that I am sero-negative, I’ve suffered greatly, medically, mentally and monetarily.

It’s not just me. I am NOT a single voice.

Advanced Sjogren’s is a nasty, nasty chronic autoimmune condition that is serious and systemic and leaves one with an escalated level of disability that can be very hard to traverse – despite what you may have heard in the media about anyone famous who has this disease but seems to be doing quite well.

No wonder I have lost most of my friends and family over the last 6.5 years since I first started getting so sick.

They all feel I am lying when I don’t attend events, when I couldn’t help Mom move, etc., and the list goes on.

The overall misconception by the world at large including the medical community seems to be that Sjogren’s is “not that big a deal” and “is easy to diagnose” and is just a bit of a nuisance dry eye issue.

It’s the reason so many suffer so needlessly. I was/am one of those many.

This is Shawn’s response to a LinkedIn post that created the illusion that Sjogren’s isn’t a serious disease.

Management for Sjogren’s (There’s No Cure)

I have been on hydroxychloroquine for about five years now.

It helps, but it’s off-label and not a cure.

Still no biologics or drugs for Sjogren’s disease yet, like for RA or lupus, but at least I’ve gotten a little relief from the HCQ after being diagnosed officially almost five full years ago now.

Support

I have needed three entities on my side in all of this: my husband, who has been by my side 100% this whole time; a couple really good docs, particularly Dr. Brent Goodman, and the government.

I was awarded full SSDI Disability in September 2022.

I worked FT my whole life from age 15 to 51 and had full credits, so therefore I got my full Social Security at age 55 vs. 65, and my Medicare Advantage kicked in 1/1/2023.

In Arizona, you have to be on Medicare Advantage when disabled and cannot go on to regular Medicare Supplements until age 65. I have 7.5 more years to go.

Sjogren’s Can Affect Memory

I got into a dementia study at Mayo Clinic in the spring of 2022 based on all of my autonomic nervous system dysfunction.

This will be my fourth year of the study on 6/4/2025.

I can still go to Mayo for the study but not for my regular care, as they do not accept Medicare Advantage plans. I believe only Mayo, MN does.

My psychiatrist also has me formally do the tests as well.

I have failed the “double trouble” test a couple times, which is learning new tasks.

It’s not so much a “memory” issue for me right now. My long term memory is better than my short term memory.

I have the issues where I can’t come up with the word that I need to come out of my mouth.

It’s like the translation from the brain to the mouth does not work, so I wave my hand around and say “you know, you know, that thingy” a lot.

My husband is like, “Oh, you mean the coffee filters.”

Multiple Sclerosis and Sjogren’s Can Mimic Each Other

So my full SSDI Disability was approved in September 2022.

Since that time I have encroached fully into central nervous system issues that were NOT included in my full award of disability including:

Cerebral small vessel disease
Central vestibular migraine
Nystagmus in my left eye
REM sleep behavior disorder
Optical coherence tomography test finding on my right eye on 1/20/25
All of these have led me to the MS testing that I’m going in for on 4/2/2025.

MS and Sjogren’s can mimic each other from a symptom standpoint (I am NOT referring to the pesky dry eye, dry mouth stuff).

I mean the real destructive stuff: the horrendous and debilitating fatigue and the downright immobilizing muscle weakness, etc.

Clearly MS is the autoimmune process where there is demyelination of the nerve sheath, and that’s what causes the scar tissue/plaque/lesion areas that show up on brain and spine imaging, and thus the explanation for all the motor disability in MS.

This is what happens in MS, not Sjogren’s.

I don’t believe research has shown a connection to a nerve demyelination process with Sjogren’s, but who knows what the future may hold?

The Skeptics

I hope I don’t have MS … but we will see. If I do have it, then maybe, just maybe, I would get even just a little respect from family, friends (the couple I have left) and neighbors, etc.

Heck, give me something to not be looked at as if I have Munchausen!

Most everyone in my life is like: “What the heck is ShowGrins, CRaPS, POTS — they all sound like silly disease names. Are you sure you’re really sick, Shawn, ‘cause you look pretty good to us.”

The biggest kick in my pants in the last six months was, one of my very best friends in the whole wide world, her husband had a tremor in his left hand.

They did the DaTscan and he was diagnosed with Parkinson’s. He got the deep brain stimulator, and he is doing amazing, thank goodness.

He filed for disability and was denied. My friend said to me, “I don’t get it, how did YOU get full disability with what you have; what my husband has is serious!”

His only symptom was the tremor and now is managed by the deep brain stimulator.

Sjogren’s, central regional pain syndrome, dysautonomia … are NOT RESPECTED in and of themselves at all as serious conditions, it seems.

Not in my world anyway. And this is what I have been up against for 6.5 years already and counting.

Sjogren’s syndrome was changed to Sjogren’s disease in April of 2024, so no longer SS…but SjD.

That is HUGE !!! It takes time for things to catch on. I get that.

Sjogren’s Awareness

Sjogren’s is a multi-system disease.

April Is Sjogren’s Awareness Month

Sjogren’s awareness is so critical! April is Sjogren’s Awareness month! I am coming in like a bull in the porcelain shop…

The autonomic nervous system (ANS) can have malfunction stemming from either the central nervous system and/or the peripheral nervous system regulation.

Sjogren’s can do a real number on both PNS and/or CNS, leading to ANS dysfunction.