What is Brain Fog? Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty in processing information. Remember that gradual cognitive decline from early adulthood is a fact of life. Brain Fog can occur in Sjögren’s syndrome (SS), but other factors might cause these symptoms and should be considered by you and your doctor.
What YOU can do about Brain Fog:
Manage your lifestyle to optimize your health and sense of well being.
Develop a close working relationship with your doctor(s):
- Always report changes in cognition/memory and mood (depression, anxiety).
- Make sure your physician knows about all the prescription and OTC medications you are taking. Especially in patients
- over 65-70 years of age, a major cause of cognitive dysfunction can be side effects of drugs and drug interactions.
- Inquire about your hormonal status, thyroid function, and blood pressure.
- Rejuvenate with sufficient sleep. If after 8-9 hours of sleep you are still tired, tell your doctor.
- Minimize stress and anxiety:
- Set realistic expectations
- Plan ahead
- Take breaks throughout the day
- Learn relaxation exercises and practice them at regular intervals
- Balance work and leisure
- Let yourself laugh
- Talk about feelings
- Limit multi-tasking and focus on one task at a time.
- Reduce caffeine and alcohol.
- Manage effectively musculoskeletal and joint pain.
- Exercise regularly. Adequate physical exercise enhances cognition/memory.
- Train the Brain! “If you don’t use it, you will lose it.”
- Boost your brain power: Continue to work into retirement (part time), learn new skills, volunteer, engage in social and mentally
stimulating activities and establish new friendships and relationships.
- Take your body to the gym and don’t forget to visit the “BRAIN SPA” – both will improve brain function.
- Recent scientific data show that longevity is associated with the successful management of chronic diseases, such as Sjögren’s, not the absence of any disease!
Suggested reading: The Memory Bible, by Gary Small, MD, Director of the UCLA Center on Aging, available from the Sjögren’s Syndrome Foundation.
***This information is from the Sjogren's Syndrome Foundation's "Patient Education Sheet: Brain Fog." Click Here to view more Patient Education Sheets from the SSF.
We encourage you to comment below and share what you've found helpful when dealing with Brain Fog & Sjogren's.
On July 23rd, 2012 the Sjögren’s Syndrome Foundation joined with other Sjögren’s groups around the world to celebrate World Sjögren’s DayWorld Sjögren’s Day and got a BIG boost from Venus Williams, professional tennis player and Olympic Gold Medalist as well as fellow Sjogren’s patient
A year after helping to increase awareness for Sjogren’s when she publicly announced her diagnosis, Venus once again stood up for Sjögren’s awareness when she carried the Olympic torch through the streets of London on, what more appropriate day, World Sjögren’s Day. (July 23rd)
Here is an excerpt from her Facebook page:
“Today was an amazing day. I carried the Olympic flame right through Wimbledon! I truly felt the Olympic spirit, participation, giving your best and bringing people together no matter what their background of differences. This Olympics is very special to me having battled through an auto immune disease in the last year. It was my dream come true to qualify for the Olympics. To carry the torch today on World Sjögren’s day was so fitting. My run with the flame today represented triumph for everyone battling an auto immune disease. I'm planning on enjoying every day at the Olympics, I won't take even one for granted!”
As you know, World Sjögren’s Day commemorates the birthday of Henrik Sjögren, who first identified Sjögren’s in 1933. This past summer, we asked members and supporters to use World Sjögren’s Day as a reason to talk about Sjögren’s. Initially, sharing can be a scary thought but you will never know what support is out there if you don’t. Awareness can be reached one person at a time and we encourage everyone to find reasons in your own life to talk about Sjögren’s.
Venus went on to win the Women’s Doubles Olympic Tennis Gold Medal with her sister, Serena Williams. The Foundation wants to not only thank Venus for stepping up for Sjögren’s awareness but also for being inspiration to all Sjögren’s patients.
The Sjögren’s Syndrome Foundation’s 5-Year Breakthrough Goal:“To shorten the time to diagnose Sjögren’s by 50% in 5 years,” is the largest initiative that the SSF has ever undertaken. This is why we are working with an outside marketing research firm to help us gather information needed to reach our goal, track our progress and tell us how long it currently is taking patients to be diagnosed with Sjögren’s.
This summer, the SSF and our marketing research firm surveyed newly diagnosed Sjögren’s patients from 2011, and of those patients surveyed, it was determined that it currently takes patients on average 4.7 years to be diagnosed with Sjögren’s. While 4.7 years is a great initial improvement from all past studies, we probably all can agree that it is still too long to wait for an accurate diagnosis!
In addition to the length of time to reach diagnosis, the SSF also was able to gather valuable data about the average age of those being diagnosed, which medical professionals are diagnosing Sjögren’s, which symptoms are causing patients to seek a diagnosis and what symptoms patients are currently experiencing. This new information will help the SSF in highlighting gaps in patients’ medical care as well as where we may be able to capture potential patients before they suffer for nearly 5 years. We then can direct our marketing efforts toward those symptoms and medical professionals.
So, now, the SSF can be proud that we have been able to decrease the time for diagnosis from nearly 8 years back in 2007 to now 4.7 years. This baseline will give us our starting point to reach our goal of shortening the time to diagnose Sjögren’s by 50% over the next 5 years. We hope that by 2017, we can say that it only takes a little over 2 years to obtain a proper diagnosis!
We can do this – but we still need more help! We thank those who have been participating in our awareness initiatives and coming out to fundraising events as well as those who support the SSF. However, there are more ways to get connected and we hope you will all step up and help us. Learn more about the SSF and how you can assist us by visiting www.sjogrens.org or calling the SSF office at 800-475-6473.
*** This was first published in the October issue of The Moisture Seekers, our patient newsletter for SSF members.
Erin, diagnosed with Sjögren’s in February of 2008, challenged herself to run as a part of Team Sjögren’s Turkey Trots in 2011 and shares her experience below of running while managing her health. Here’s Erin’s story:
I ran track in high school and college and have always enjoyed running, so I got very excited when I heard there was a Team Sjögren’s Turkey Trot fundraising event. I had always wanted to participate in these events and once I knew I could bring awareness and raise money for Sjögren’s, I wanted to do it right away.
My doctor continuously talks to me about keeping up with my physical fitness, not only for my personal well being but to help fight off sickness that Sjögren’s patients are prone to and I thought joining Team Sjögren’s was a way to accomplish that. Once I decided to run, my husband, Mom, older sister, and her husband, chose to run with me.
Running for long periods of time was definitely difficult and I’m finding my recovery time to be much longer as I get older. I don’t bounce back the way I used to. However, when I was running the race, knowing that I was running for a cause I’m directly affected by kept me motivated and pushing for the finish line.
I would train with my husband and made sure I was eating healthy options and sleeping a sufficient amount. I started noticing the negative effect it would have on my body if I didn’t get enough sleep or ate the wrong food. Running is hard enough, but when you have a weakened immune system it can take so much more out of you. You need to have a certain level of mental toughness along with support to get through those hard times.
Even though the training was hard for me, I absolutely loved being able to participate in a race that could not only bring awareness to this disease but also raise funds for a possible cure. I also liked being able to connect with others who have Sjögren’s. My family and I wore our Team Sjögren’s T-Shirts and as we were racing multiple people would comment about their friends, family or themselves being affected by this disease. Knowing that the Turkey Trot was bringing people together for a cause I believed in was a wonderful feeling.
The initial thought of getting out there to run or walk in a 5K seemed like a lofty goal, but one of my biggest motivations was knowing that my family and friends were by my side. It was an incredibly uplifting experience to realize so many people believed in me and donated to my team’s fundraising efforts. I felt so proud of myself when I finished the race. I’m sure I could have run faster, but knowing I completed the race and made my family and friends proud was validation enough for me.
Thank you Erin for sharing your story and stepping up for Sjögren’s by running again this year as a part of Team Sjögren’s Turkey Trots!
This year, we hope you will also start your day of giving thanks by stepping up for Sjögren’s as apart of Team Sjögren’s Turkey Trots!
The SSF is proud of the work it funds and would like to announce the 2012-2013 Research Grant Recipients with everyone.
Click Here to view the 2012-2013 SSF Research Grant Recipients.
For almost 20 years, the Sjögren's Syndrome Foundation has been the premiere organization in Sjögren's research funding. Promoting innovative research that will have the greatest impact on the lives of those who have this prevalent and devastating disease. Currently the SSF funds more than $275,000 a year for research projects, marking a 250% increase in funds over the last five years.
The SSF is focused on many research initiatives to fulfill our mission including: the development of Clinical Practice Guidelines, the launching of a Clinical Trials Consortium, advocacy among federal research entities, and through the SSF Research Grants Program!
The SSF recognizes that we cannot make major progress until we find a more definitive and easier way to diagnose Sjögren’s. Better diagnostics is an important part of the Foundation’s 5-Year Breakthrough Goal: “To shorten the time to diagnose Sjögren’s by 50% in 5 years!”
Click Here to learn more about these talented researchers’ projects and read their abstracts.
Thank you for your support!
The Sjögren’s Syndrome Foundation has been receiving a lot of questions about if it’s recommend for a Sjögren’s patient to get a flu shot. Below is a past article from The Moisture Seekers about Sjögren’s and the flu vaccine.
"I recommend that most of my patients with Sjögren’s syndrome get a flu shot unless they are allergic to eggs, have had a reaction to the vaccine previously, or have other health issues that are a contraindication to the vaccination. But it is always best to discuss the vaccination with your physician.
The side-effects of the vaccine, including achiness at the injection site and very mild flu-like symptoms, are certainly an inconvenience. But contracting the influenza virus could cause severe and even life-threatening symptoms for someone with an autoimmune disease. It could lead to a severe febrile respiratory illness that may mean significant time away from work and possibly hospitalization.
I prefer that my patients receive the vaccine in shot form rather than the nasal spray. The shot is inactivated virus particles, while the nasal form is live virus, so there is more risk of developing mild viral symptoms with the nasal administration. This risk associated with the nasal spray vaccination is higher if you are taking medications that can affect the immune system, such as azathioprine, methotrexate, or prednisone. Even still, most patients with Sjögren’s who take systemic medications may receive a flu vaccination, but, again, it is always best to discuss this with your physician before taking the injection."
- Jody K. Hargrove, MD
- Try ointments or gels at bedtime by first applying them only to the eyelids and lashes. If that is not helpful, place ~1/4 inch of ointment between the lower lid and eyeball. Because it blurs their vision, some individuals may not like using it.
- If you are bothered by light, wear sunglasses or try lenses with a FL-41 filter.
- Apply a warm, wet compress to the closed eyes using a washcloth heated in tolerably warm water from the sink or shower. Apply at bedtime and upon awakening for 5 minutes or more often if desired.
- When starting a new, preservative-free artificial tear, use the drops every 1-2 hours for at least two weeks before reducing frequency of use. When you taper their use, see if your symptoms worsen. It often is easier to determine feeling worse than better.
- Use non-preserved artificial tears frequently and regularly, even when your eyes feel good. Don’t wait until your eyes are uncomfortable.
Share with us below what tips you’ve found the most helpful when treating dry eye.
Dry mouth, a hallmark symptom of Sjögren’s, is a decrease in both the amount and quality of saliva, causing tooth decay. This is why Sjögren’s patients often experience large dental bills that are not considered part of major medical insurance.
While there is no easy answer to this problem, there is an appeal process to have dental bills covered by medical issuance that many SSF members have had luck with.
We face a tradition in which dentistry and major medicine have been treated separately for a long time by insurance companies and even many medical professionals and educators. This is unfortunate, because the mouth often mirrors the body – in other words, oral health is an integral part of systemic health, and major medical problems often are reflected in the mouth.
What can you do?
The best tool is education. Have your doctor explain to your insurance company that Sjögren’s is a chronic and systemic illness that involves serious oral health complications and treatment. Preventive care and care when problems first arise are critical so that more major problems don’t develop in the mouth and affect the rest of the body. For example, infection in the mouth can spread in the body, and loss of teeth due to dry mouth can impact nutrition. Sjögren’s patients are susceptible to developing non-Hodgkin’s lymphoma, and this complication most frequently is manifested first in the salivary gland.
Share the information on the Foundation’s Website and a copy of the Foundation brochures on Dry Mouth and on Sjögren’s. We need to ensure that our insurance providers and our doctors understand the close connection between the mouth and the rest of the body.
The National Institutes of Health Sjögren’s Syndrome Clinic worked with the Foundation to draft a sample letter that patients can give to their oral care physicians to send to their providers.
Please feel free to give this to your doctor to submit to your insurance company.
You also can contact your U.S. Senators and Representative. Click here to find out who your Congressional members are or how to contact them. Tell your Congressional members your story and ask for their help. Don’t forget to share information about your contacts and their responses with the SSF, so we can follow up on behalf of all Sjögren’s patients.
The Sjögren’s Syndrome Foundation is working hard to increase awareness and education about Sjögren’s so that patients can obtain better insurance coverage. We encourage you and others to share your stories so the Foundation can use those stories as we strive to help improve the lives of those with Sjögren’s.
When meeting a physician for the first time, it’s imperative to come prepared. Prior to my first visit, I write out my objectives for that appointment. My initial goals are often quite simple. Primarily, I want to determine if a successful working relationship with the practitioner can be achieved. Medical care of a chronic illness, in my opinion, is a journey that requires a trusting partnership. Unfortunately, many primary care physicians have had little experience with Sjögren’s. Therefore, it is part of my responsibility to provide them with updated information on our illness.
Listening carefully to answers to questions (such as the two listed below) will provide useful information for making this decision.
- How many patients have you treated with Sjögren’s?
- Are you interested in receiving professional educational information regarding Sjögren’s treatment, research and management?
If a practitioner is not open to learning about Sjögren’s, then I know immediately that this relationship isn’t a good fit. While this can be discouraging to realize, it is far more challenging to try to work with a physician who is not willing to learn about our complex syndrome.
Secondly, before an appointment, I gather three pieces of information:
- Copies of my last few lab and test results.
- A typed list of my current medications/supplements with dosages.
- A typed list of significant medical conditions/ injuries with corresponding dates and treatments (the last two are kept as easily updated documents on my computer).
Providing my new practitioner with these lists helps expedite my appointment and serves as an indicator that I am serious about taking an active role in managing my health.
Depending on the situation, I also have brought a copy of The Sjögren’s Syndrome Handbook to give to the physician along with a copy of The Sjögren’s Quarterly which I offer to have sent to them. I explain that a great deal more has been learned about Sjögren’s in the last 5-10 years, including the fact that many patients experience more systemic disease involvement than previously understood (many doctors still only relate dry eyes and dry mouth with Sjögren’s). I also inform them that while significant medical ground has been gained, it still takes, on average, seven years to diagnose Sjögren’s. This is a mind-numbing statistic considering it is the second-most-common autoimmune disease, affecting nearly four million Americans.
Bringing a medical history binder to my appointments also has been extremely helpful. I use a large three-ring binder divided by medical specialty (including copies of office visit records), lab results, testing results, new treatment information, medication records, and notes. Because my binder is ridiculously thick, I keep it in my tote bag, out of sight, until I need to reference something. Several times I was able to provide missing lab results which provided the basis for immediate changes in treatment.
The last matter of business for my new doctor visit is the establishment of clear guidelines regarding medical management and communication procedures.
Understanding medical management means clarifying what things I will see this doctor for and what conditions will predicate a visit to a different member of my “medical team.” I also work with my practitioner to determine who will be the “chief navigator of my ship.” This may sound simple as I imagine it is widely understood that a rheumatologist would always function as a Sjögren’s patient’s main physician. However, depending on a number of factors, including insurance coverage, appointment availability, geography and perhaps even a practitioner’s interest in managing a patient with Sjögren’s, that question can have a myriad of answers. I also discuss how various physicians communicate my care to one another, so that my main physician will have a complete picture of my health. Furthermore, understanding the new physician’s office procedures for sick or same-day visits, medication refills and how often I should be seen for follow-up care are good questions to have answered on your first visit.
Establishing a successful relationship with a physician is like establishing a relationship with a friend. It requires understanding, patience, effective communication and a sense of humor.
By Sara Sise, Sjögren’s patient and past Board of Directors Member
With the launch of the SSF 5-Year Breakthrough Goal, 50in5: “To shorten the time to diagnose Sjgoren’s by 50% in 5 years” we are also hoping to change how Sjogren’s is understood.
The Foundation knows how isolating being diagnosed with an invisible illness can be, but you are not alone. There are an estimated 4 million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities.
This is why we are launching a new awareness campaign for our website, www.sjogrens.org, called “Faces of Sjögren’s” where we want to share your stories!
As a way to help recently diagnosed patients, in addition to helping others find a diagnosis quicker, these stories will help others relate because no patient is alone. Whether you are a patient, doctor, loved one or family member, we want to know your own personal experience with Sjögren's. With your help, we hope this project will help us reach our 5-Year Breakthrough Goal!
When submitting your story:
- Stay within 250 words
- Include aspects of how Sjögren's has affected your life and ways you have been able to effectively cope with your symptoms
- Include a personal few words of inspiration
- At the beginning of your story, please complete the following phrase, “When I was diagnosed with Sjögren's, my first thought was…”
- And don’t forget to include a picture of you!
Email your story to firstname.lastname@example.org with the subject “Faces of Sjögren’s.” Together we will conquer Sjögren’s!