Wednesday, July 7, 2021

Sjogren's Advocate: Fatigue, pain and brain fog? Don't blame it on fibromyalgia

As usual, Dr. Sarah's most recent post on Sjogren's Advocate is excellent. Here is the first few paragraphs, but head over to read it all:
Sjogren's symptoms can look like fibromyalgia 
Many Sjogren’s patients are told they have fibromyalgia, without anyone ever considering the possibility of a Sjogren’s diagnosis. Sjogren’s symptoms can look a lot like fibromyalgia. Fibromyalgia is a diagnosis of exclusion. Once Sjogren’s is diagnosed, the “fibromyalgia” label should be dropped.  

Fibromyalgia is a syndrome, not a disease (181). It is cluster of symptoms that is not associated with objective markers. On the other hand, Sjogren’s is a well-characterized immune-mediated disease, not a syndrome. While Sjogren’s is not always easy to diagnose, there are numerous biomarkers (indicators) of the disease. The name “Sjogren’s syndrome” is inappropriate and outdated, and is slowly being replaced with “Sjogren’s disease” or simply, “Sjogren’s” (188). Continue reading here
Yep. Agree 100%.

I was initially diagnosed as having fibromyalgia, as I did indeed meet its criteria. I hurt. Everywhere. I was exhausted beyond belief, and my brain was mush, especially when my fatigue was at its highest. Eleven -- yes ELEVEN years ago, I expressed my numb brain this way: 
........So, I have had a week where the ol' grey matter just isn't functioning at it's peak. This used to freak me out considerably early on in my experience with autoimmune disease. You know the feeling - it's as if any thought process is in sloooooooow mooooooootion. Retrieval of items in my memory feels like rummaging around blindly for my size in a mile high stack of clearance sweaters at JC Penny. It's possible to find what you need. But it takes forever.
You can read the rest of my post here. Be sure to read the comments, which are amazing. 

Luckily, my doctor also ran blood tests for autoimmune diseases, which proved that all of the above was related to Sjogren's. She then removed fibromyalgia from my diagnosis list, so I was fortunate in that respect. 

Has your medical care been compromised due to an inaccurate fibro label? 

1 comment:

Unknown said...

Hi Julia,
I have not been diagnosed with Sjogren's yet even though I have a lot of the symptoms. I do however have Ankylosing Spondylitis and I was misdiagnosed for 10-15 years with Fibromyalgia. By the time I was finally diagnosed correctly there was damage to my spine, and I was very disabled by the fatigue and systemic inflammation running amok. Due to the delayed diagnosis biologic medications have a very short-lived efficacy for me. The ones that work generally only work for about 6-12 months. Many I don't respond to at all. It's frustrating when our conditions resemble Fibromyalgia and we get a misdiagnosis that prolongs much needed treatment. Thanks for you blog post. They're always informative, and it's always good to hear from you.