sjogrenssurvey-blog

[sjogrenssurvey-blog]

[sjogrenssurvey-blog]

What You Need To Know

Sjogren’s is an autoimmune disease that can cause a wide variety of symptoms and result in a wide spectrum of severity. It has an overwhelming fondness for women, affecting eight times as many women as men. The average age of diagnosis for women is the early 50s; the average age for men is the late ‘50s, but Sjogren’s can occur at any age. The portion of the general population who have Sjogren’s syndrome is not known; studies vary widely in their findings, from a fraction of 1% to 7% of the elderly population. Better research on prevalence is needed, as is a standardized set of diagnostic criteria. It’s important to note that elderly folks have Sjogren’s 7-8 times as often as do people in their twenties. Sjogren’s can leave patients bedridden, but many patients are very active with only bothersome dryness of their eyes and/or mouth that doesn’t affect their lives significantly. 84% of Sjogren’s syndrome patients are women. One-third of us (including me) have small fiber nerve damage that causes complications in their autonomic body functions. Some I’ve spoken to have damage to organ valves, some even die of the resultant heart or kidney disease. The folks whom I’ve met who bother to talk to other patients online are often very ill, and have become desperate to learn more about their complicated conditions. Please don’t visit a support group and assume you’re going to be just as bad off as the folks online. We are home and online because we’re too sick to do much else. Many complain that their family doctors are ill-informed or that they aren’t giving them enough information. The recent influx of studies on Sjogren’s syndrome and our related conditions make keeping up with the current literature a must for the doctors who care for us. All About Moisture and the Lack of It People with the disorder experience Sjogren’s in various ways. Some are barely inconvenienced, some lives are altered drastically by the profound fatigue that is a major hallmark of the disease (we’ll be talking a lot about fatigue later on). Some of us are in constant pain due to small and large fiber nerve damage, others suffer sporadically with gland inflammation. Some Sjogren’s patients are merely bothered by dry eyes and take a prescription that keeps that issue in check. They may always be able to manage their illness with little difficulty. These people may live and die with barely a hitch in the course of their lives. Others must use artificial tears regularly throughout the day and suck on hard candies or chew gum to keep their mouths moist. There are prescription pharmaceutical remedies for both these issues when over-the-counter remedies are no longer enough. Women with Sjogren’s can experience vaginal dryness that makes it too painful to have male/female sexual intercourse. Pain during intercourse is often described. A lack of ability to perspire can interfere with body temperature regulation. Some of us produce so little saliva that we are unable to keep our teeth from rotting out of our heads no matter how diligently we brush, rinse and floss. Many middle-aged folks in my Facebook support groups already have dentures or tooth implants. Some of us lose their voices due to lack of mouth moisture to lubricate their throats. Singers with Sjogren’s syndrome often notice a raspiness due to laryngeal tissue damage from drying out. Some singers have to give up singing altogether. A few SS patients even completely lose their ability to speak due to throat tissue damage. Wide Spectrum of Central Nervous System Complications As of this post, some small studies suggest that about 30% of Sjogren’s patients have small-fiber nerve disease as found by skin punch biopsy. There is some speculation that small-fiber damage can progress to large-fiber nerve damage; a small, but significant percentage of patients show damage to myelinated large-fiber nerves. Small-fiber nerve damage is common in SS; this kind of nerve regulates the function of autonomic systems; damage to these nerves leads to a wide variety of dysfunction to body processes that occur without our conscious effort. This condition is called dysautonomia. We don’t have to think about each breath, or each heartbeat for them to keep going, or about pushing our blood or food through our digestive tracts or accessing oxygen or glucose or the uptake of trace minerals. It’s worth noting that recent studies show that up to 62% of fibromyalgia patients actually have small-fiber neuropathy to blame for their muscle pain and spasms. Dysautonomia is a health problem caused by our central nervous system’s inability to properly carry out our autonomic functions, which is everything our bodies do unconsciously, that is, without our consciously directed effort. Some autonomic functions include: 1.  Breathing 2.  Sleeping 3.  Digestion 4.  Heartbeat 5.  Hormone release 6.  Body temperature regulation 7.  Sweating 8.  Balance 9.  Sensory feedback 10. Storing memories - that memory loss is an autonomic function is speculative on my part. Emerging research has us closer than ever to a solid understanding of the memory storage process and the physical existence of engrams, the place where our long-term memories are thought to be. Many Sjogren’s patients report memory and cognitive issues (often called “brain fog” by patients). Many patients report losing jobs because of not being able to keep a train of thought or get enough done in a timely manner. Indeed, this was my chief complaint. I could have kept on with school, I could have withstood the muscle pain, dizziness and fatigue if only I was able to think like I used to. But, no, all of me was tired straight through, especially my brain. Even now, I try to do all intellectually challenging things in the morning when I am sharpest. Many Sjogren’s patients also have dysautonomia. We can’t always depend on a regular heartbeat, the ability to swallow smoothly, to be able to sleep well, to properly digest our food, or even to regulate our body temperature. Heatstroke is always a possibility in hot weather and can come on suddenly after even a short exposure to hot, humid conditions. Dysautonomia is related to small-fiber neuropathy, but it’s not clear exactly how.   Even taking a shower can be challenging if we try to shower in the warm temperatures we used before we got sick. One woman in my Facebook support group reports that her doctor advised that she not even go outside when the temperature (in Fahrenheit) and humidity together add up to 150 or more. I have heard over and over people say that just the effort of taking a shower tires them out so much that they have to go back to bed. I have been there many times! Talking to Your Doctor If you’re really lucky, you have a GP who is familiar with Sjogren’s syndrome. Unfortunately, there is so much new info coming into medicine, our family doctors may not familiar with recent research on the disease and may still think it’s a rare condition or a condition that only affects salivary and lacrimal glands. For this reason, we may need for our rheumatologists to behave as the doctor who coordinates our various medical specialty needs. Please encourage your rheumatologists and family doctors to become more familiar with this condition as it is still under-diagnosed. Ask whether they would appreciate being updated by you; offer to bring in new research papers. You may not be able to bring in the full studies due to paywalls, but you can bring in the abstract; it will give your doctor enough info to look up the full study if s/he has an account with his university library, Medline or Pub Med, etc. Spreading awareness is important: Early detection can lead to disease-modifying treatment. That is, there are drugs that can prevent further damage in Sjogren’s patients who tolerate it. There is research going on right now that may result in a vaccine for us in just a few years. I encourage everyone to join The Sjogren’s Foundation (www.Sjogrens.org) to receive ongoing updates on the state of our condition. Patients are best-served when they are being looked after by a good rheumatologist. A good rheumy will know that your Sjogren’s can cause widespread pain from nerve damage as well as deep fatigue. Check the rheumatology staff of your local teaching hospital if you’re having a hard time finding a knowledgable doctor. I’ve found good specialists by seeing who, locally, was publishing research on my condition. I realize that not everyone lives near teaching hospitals, but it can be worth the trek to the nearest big city if you’re only seeing your rheumatologist every 6 months or so, as most of us do once all the diagnostic interaction between you and your doctor’s office is done. Unless a physician has a particular interest in Sjogren’s syndrome, they may not even be aware that it is as widespread as it is now known to be. Recently thought to be a rare disease, Sjogren’s is now thought to occur in 3-5% of the population. That makes it one of the most common autoimmune diseases, only lagging after rheumatoid arthritis. Even less-understood is the complication of small-fiber neuropathy (SFN). Approximately 30% of Sjogren’s patients suffer with it. Patients report that even their neurologists aren’t up on the fact that SFN can cause pain and spasms as this is relatively new information that they didn’t get in medical school. Have a detailed conversation with your general physician about the many aspects of Sjogren’s syndrome and make sure that the two of you are a good fit. Small-fiber neuropathy is painful and can be debillitating; it can impede all physical function because of the wide-spread muscle and connective tissue pain it can cause. SFN is a factor in the disruption in autonomic dysfunction that can lead to serious complications. It’s worth knowing that up to 1/3 of us have SS-A and SS-B negative blood tests. Remember, absence of evidence is not evidence of absence. You are welcome to tell us about your journey to diagnosis or your dissatisfaction with not getting a prompt one. Was it hard for you to get a diagnosis? Please tell us your experience! Sources - I’ve done a whole lot of reading since my diagnosis in February of 2018, but the studies and articles I consulted for this particular blog, are listed below.   From Engrams to Pathologies of the Brain - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5383718/ Small Fiber Neuropathy: Disease Classification Beyond Pain and Burning - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5912271/ Sex differences in Sjögren’s syndrome - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4630965/ Small-fiber neuropathy: Expanding the clinical pain universe - https://www.ncbi.nlm.nih.gov/pubmed/30569495 Primary Sjogren’s syndrome with central nervous system involvement: https://pdfs.semanticscholar.org/f2ee/a33c57f84283a4cd882294ad75fcc73e8232.pdf Sjogren’s syndrome disease info - https://www.hopkinsmedicine.org/health/conditions-and-diseases/sjogrens-syndrome Sjogren’s Center at Johns Hopkins - https://www.hopkinssjogrens.org/ Varied prevalence reported in large epidemiological survey - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4122257/ The Sjogren’s Syndrome Foundation - https://www.sjogrens.org #Sjogren's diagnosis#Sjogren's#Sjogren's symptoms#fatigue#deep fatigue#autoimmune#spoonie#chronic#profound fatigue#fatique#small fiber neuropathy#autonomic disorder#autonomic#dry eyes#dry mouth

[sjogrenssurvey-blog]

Today, we begin. Again, Anew.

Okay, today’s the day I start my Sjogren’s blog. My chest is pounding, I want to do this right. So, forgive, please, my early missteps as I learn Tumblr.

I plan to publish updates about patient trends, new studies, new info, new conclusions and hypotheses. I will seek out and relay analysis, ask questions, ask for input. I’m hoping our mass effort as patients can help us cope, help us support research and awareness, and even help find our cure which may be just around the corner (more on that in future posts). I am hoping we can help each other illuminate for the non-sick the way of life of a chronically ill patient with an invisible illness. In the meantime, maybe we can relieve some anxiety that comes with facing such an unknown future, and help our fellow autoimmune patients get the knowledge and resources we need to enrich our lives.