Monday, November 18, 2013

"A New Dawn for Sjogren's"

Wiki Commons: Sun Rising at Dawn

It was a good week for Sjogren's!  Three important articles that I saw in just one week.  I'm always pleased when I see more scientific research and attention being brought to the disease for us Sjoggies and I do hope this is a trend. "A New Dawn for Sjogren's":  I couldn't resist the headline from The Rheumatologist.

This article was particularly relevant to me since it linked Sjogren's and inflammation to local neurological pain. As most of you know, I have significant neurological symptoms with my disease. For a long time that was a real problem. Neurologists couldn't figure out what was wrong me and I ended up being prescribed pain drugs and basically told to go away.  There was not a perceived link between the pain and Sjogren's. This article goes in to how the symptoms that are often talked about as "benign" such as dryness, muscle and joint pain, fatigue, and brain fog to name a few can be the most pernicious.  As the authors Robert Fox, MD, PhD and Carla M. Fox, RN write:

In order to make a significant difference in the quality of life for patients with SS, new therapies must not only improve extra glandular manifestations of SS, also alleviate the symptoms (fatigue, dryness, and pain) that lead to patient disability….This will require better cooperation between rheumatologists and experts in the field of neural pain circuits. With a more focused effort, the complex interplay among immune, neural, and hypothalamic pathways in SS may finally be unraveled.

I've always known there was a link between my pain and the Sjogren's, but seeing a researcher detail it and call for new therapies is really welcome and I think may be helpful for others.  I would encourage anyone if you find an article with new research relevant to your symptoms, print a copy and take it to your next doctor's appointment. In my experience, bringing articles like these to the attention of my doctors helps them treat me. 

Given how many we are, the actual dollars spent relative to other conditions is still disappointing to me, but perhaps these announcements and calls for more research over the last few weeks represent a new trend! At least I can be optimistic they will help raise awareness among doctors, scientists, and patients that could really lead to "A New Dawn for Sjogren's" and some relief for us in the not so distant future. At least that's what I'll continue to pray and advocate for everyday.

4 comments:

  1. Hi there! Im glad you wrote about this as I have pain every day and my xrays are normal. My Dr says I have fibro too and blames my pain on that. But I also get heavy limbs, weakness, and tingly as well as parts of my body will feel numb. I also get very cold extremities and flashing lights in my vision. Its so frustrating that my Dr wont listen and blows it off. Btw I also have blog where I post healthy recipes and talk about Sjogrens and food allergies.

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  2. Hi, I'm one of the 10% of people with sjogrens who are male. Same story here: heavy, numb feet, some fogginess, some neuropathy and definitely problems with dry mouth, dry sinuses, and arthritis. My doc had it diagnosed some thirteen or fourteen years ago, though I'm sure I felt the symptoms earlier. Anyway, life goes on, better in the summer than in the winter.

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  3. Just to say hello from the hospital in Serbia, Belgrade, where I am waiting for gland biopsy to be trully SS. As I am Sjoggy for 2 weeks you can imagine how helpful is your blog. I have all the ss problems you mentioned, I would like to know wheather some antidepressant helped your fibromialgia. I have been told to take an Austrian- trittico( trazodon)

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  4. The online Natural Herbs Clinic offers Sjogren's syndrome herbal treatment for all chronic and obstinate health issues. Expert of health uses superb herbal extracts in tablet form, which are easy to take, effective and safe for long-term use.

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