April is Sjögren’s Awareness Month.
Sjögren’s syndrome is one of the most prevalent autoimmune diseases, affecting an estimated 4 million Americans.
According to Janet Church, President and CEO of the Sjögren’s Foundation, along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas.
Church said there are no specific therapies to manage Sjögren’s.
After years of aches, pains and dryness issues, Jina Baxley of Havana was diagnosed with the autoimmune disease at the age of 36. She found herself becoming more tired than usual.
“It started as a Vitamin D and B12 deficiency, so I pushed for more tests until they tested my rheumatoid factor,” Baxley shared.
She said living with Sjögren’s on a daily basis becomes exhausting and frustrating.
“I look completely healthy,” Baxley said. “People think I’m a hypochondriac or faking. I always feel I have to explain why I look like a healthy 44-year-old but can not even do the things a 60 year old can at times.”
Baxley said she had to learn how to use what limited energy she has wisely so she doesn’t run out before the end of the day.
“I have days when I can’t even get out of bed,” Baxley said. I get brain fog a lot, I can not think of simple things, common names etc.”
Baxley said her body aches every day, but some days are much worse than others.
“Muscles ache, joints hurt, eyes are dry, and I can’t seem to be able to drink enough water,” Baxley explained.
Baxley said Sjögren’s Syndrome has affected her quality of life.
“I wish I could hang out with my friends more, go out at night like everyone else,” Baxley said. “I go to bed earlier than my 60 year old husband because I have to get 8 hours of sleep or I will be worthless the next day.”
Sjrogen’s has also affected some of Baxley’s relationships.
“It’s part of the reason my first marriage ended, not all of course, but he simply didn’t understand my lack of energy and enthusiasm,” Baxley shared. “One very uncomfortable symptom I was reluctant to share is intimate dryness. I would be doing this an injustice if I didn’t share this embarrassing fact.”
Baxley said being intimate with her husband was painful because of the dryness.
“Also, I don’t check in on my friends like I should or go hang out with them much,” Baxley noted. “Not because I don’t want to but because I forget to call once I’m exhausted after work. I feel like a bad friend at times. Often I ask if we could just hang at someone’s house. That’s easiest for me. The chairs are way more comfortable.”
She said she also has to watch what she eats. Certain foods can trigger her symptoms, causing them to worsen.
“When I go into a flare I may not even get out of bed or lay on my heating pad all day,” Baxley said.
“During a flare the pain is amplified. Everyone with Sjogren’s is somewhat different, some have more pain or symptoms are far worse than my own. In that way I am thankful.”
Taking herbal anti-inflammatories and watching what she eats has been the most effective way she has found to manage her symptoms.
“Most have to be put on immune system suppressors,” Baxley said. “I work very hard to make sure I manage my symptoms holistically first. That is one thing I don’t want to be put on. Most have no choice in the matter as their symptoms are much worse than my own.”
Baxley said Sjögren’s syndrome is still not fully understood in the medical community, even among rheumatologists.
“I have gone through 4 doctors so far, still haven’t found a rheumatologist I like yet but my primary seems to understand,” Baxley said. “Don’t get me wrong, the Rheumatologists in this area are wonderful, just not for me. All have been kind and helpful.”
She said support groups on Facebook have also been helpful. She said members ask questions, and other members answer what has worked for them on various symptoms.
“My road to a proper diagnosis led to, D & B12 deficiency to Sjögren’s, to MGUS, to Pseudomyxoma peritonei cancer, to being watched for Multiple Myeloma…caught all those early through my insistence that I did not feel right,” Baxley said. “Sjrogrins being my biggest battle so far, not my scariest, but one with a lifelong fight.”
Erin Hill – Gadsden County News Service