Saturday, December 17, 2016

We Need Answers

I need to rant.

Maybe it's because I'm in a really bizarro mood today. But the need to sputter about a thing that I won't be able to change most likely arises from irritation after reading the results of several Sjogrens studies over the past few days.

None of these studies are new ones, so I don't have anything exciting to report. Which is rather disappointing. But because I have seen them before, on second reading of several studies in a row, something stands out to me that I hadn't noticed before.

While I have no hard data to support this, it appears to me that the vast majority of study authors (and yes, I know that there are some that haven't) choose to research things like eyes and tears and saliva production and autoimmune antibodies in the study of Sjogren's Syndrome because THEY ARE MEASURABLE; not because they're the most important to Sjogren's patients. I've told anyone who would listen repeatedly and usually at the top of my lungs: Yes. I have significant dry eyes and dry mouth but those symptoms pale when compared to the life-altering bone-crushing disability-inducing fatigue and the resulting depression and anxiety that follows. I am not alone in feeling this way.

I continue to regularly receive letters from newly diagnosed Sjs patients who are terrified at the severity of their fatigue; wondering how this will impact their life in general, as well as their ability to be parents, employees, and family members. They write to me because they don't get information and guidance from their medical caregivers, and when searching online for information on fatigue find very few reputable sources which only contain vague information. Because there just aren't enough studies which provide useful data that could lead to treatment. So when trying to answer these letters, I too can only provide vague information and can't answer any of their very valid why, WHY, WHY?!!! questions. In my personal experience with this difficult disease I'd like some hard and fast answers to these questions too.

I want to grab study authors and and unsympathetic rheumatologists by their white lapels and shake them until their teeth rattle. People. I know that the research tools which objectively measure fatigue and depression and anxiety are elusive, and I understand that at this point in time there are very few treatments that offer real and lasting relief of autoimmune related fatigue. The realities of those two difficulties are what makes them more important to study and discuss, not less.

Since when has science been flummoxed by tackling something hard?

We need a Sjogren's version of the Wright brothers here.

Image from Library of Congress 

8 comments:

Nicole said...

Julia, I totally agree!

I'm so thankful for you, especially hosting Dr. Schafer on your blog. Finding out that I have POTS and treating it have made a major dent in my fatigue. I could NOT be a teacher without that knowledge and treatment!

I know that is not the answer for everyone so more research is definitely needed. As someone who only has minimal dryness all the studies on dryness get really old. I know that there are phenotypes where that is a major issue but there are also a significant number of us who vary from that, and more being diagnosed all the time as dx improves. (Yay, Sjogren's Foundation!)

ChrissieE said...

YES, YES, YES!!! I couldn't agree more. It is not the pain and dryness that are disabling for me. They're certainly no fun but they're tangible, and for the most part, at least temporarily treatable. It's the fatigue which you describe so very adequately, that has me immobile, depressed, anxious, essentially disabled. Yet if it gets acknowledged at all by a doctor it seems almost flippant in it's disregard. No one seems to be studying it, and very few doctors even try to treat it. I've gotten 3 Christmas presents wrapped... three!... it's taken me nearly a week to recover from it. I have no decorations out... ok, 1 Santa and the Advent wreath are out. I just saw an Audi commercial on TV where a line of Audi's are going down the street, the camera pans to a shot from the air, and as the cars travel down the street the town lights up with Christmas lights and decorations, inside houses and out... I wasn't think about it, I was just watching the TV, and then tears formed in my eyes simultaneously with the thought, 'maybe I need an Audi'. Obviously I haven't lost my sense of humor even through the tears, but it also let me know the diseases and fatigue are emotionally effecting me much more than I realize. My autoimmune conditions are not new for me... I've had several years to come to terms with them. But clearly the loss and longing for my old decorating-cookie making-gloriously wrapped gifts-self hasn't diminished with time. Thanks for your "rant" Julia. It's my rant as well.

Anonymous said...

Yes, yes, yes, and YES! I am grateful for the symptom-management tools for dry eyes and mouth that have emerged in recent years, but the debilitating fatigue is ill-understood, largely ignored, and impossible to explain to anyone who hasn't experienced it. Sjögren's is a profoundly isolating disease. My best social outings are often visits to a dentist whose favorite patient died of Sjogren's. His office is the one place in the world where I can laugh, chat, lie down and drink all the water I want without having to explain or justify a dang thing.

I've often thought we need a cute, cuddly character to represent Sjögren's to the world in an informational ad campaign. The suffering of real human beings is too easy to ignore.

Andrea said...

Hi Julia

Thank you for summing up perfectly how so many of us are feeling. I wonder HOW we might be able to go about getting autoimmune fatigue on the research radar. Is this something that the Sjogren's Foundation can advocate for? Clearly someone needs to know that this research (and its answers are needed).

Wishing you a magical Christmas.

Andrea

P. Rogers said...

http://www.cfstreatmentguide.com/blog/immune-activation-chronic-inflammation-and-mitochondrial-dysfunction-in-autoimmune-disease-and-mecfs

My husband emailed this to me. It's highly technical but does show that some research has been done on this topic. Perhaps you or one of your medical contributors could break it down into understandable terms for we sjoggies who are laypeople. Thanks for your encouraging blog. Always happy to find a message from you in my inbox.

Anonymous said...

Thanks Julia for more spot on comments! You certainly speak for me...I DREAD going to the doctors office because of their flippant attitudes...thank goodness for your blog...your humor is always welcome as well as your insights as a fellow Sjogrens patient...I'd like the foundation to take the "syndrome" out of Sjogrens...just like AIDS was a "syndrome" no one would dare refer to AIDS today as a syndrome...thanks for being there for "all of us".
Merry Christmas to you and your family and Happy New Year to all of us...

jloblow said...

I have had Sjogren's for over 8 years, it was "discovered" to be Sjogren's about 2 years ago. I have fought all the usual symptoms but like many it's the tiredness, and lack of interested in completing any project that made me feel useless. I was lucky in November when I was given a new doctor. He walked in the room the first visit and said "I spent three hours last night reading your chart, there is a lot wrong with you but I can fix most" he proceeded to send me for a lot, an awful lot of tests. When I saw him next he spent an hour and a half reviewing every test with me. He asked how aggressive I wanted him to be....I told him to go for it. He then put me on a group of natural vitamins,
Got rid of some of my meds. And added to my 600 mil. Of gabapentin 3x a day 300. More. So I am now at 900 3x a day. He also had me give myself a shot in the stomach of methotrexate Once a week. I feel like I have been given a second chance at life. I have so much energy. I no longer go to bed at 7:00 but I am still up at 10:00. I can even concentrate on projects. Check with your Dr and see if it can help you.
Joyce

Anonymous said...

I am trying to get a diagnosis. I have all the symptoms but not the bloods or lip biopsy results. I am scared stiff at the speed of decline. Now after less than a year, have tremors both hands, severe brain fog, digestion etc packed up,skin dry as dust and hair receding and falling out. How do you manage to keep going? I feel uttermy overwhelmed by this!

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