3 posts tagged “Sjogren’s Syndrome”

April is Sjogren’s Awareness Month

Posted April 21st, 2017 by

It’s April, which means it’s also Sjogren’s Awareness Month. Why do we need awareness? Around four million Americans have Sjogren’s, but less than half of those patients are diagnosed. Sjogren’s is often referred to as an invisible disease and despite patients’ severe discomfort, many don’t often see it as debilitating. This can be isolating for patients and one of the many reasons more awareness of this condition is needed. So, let’s talk facts.

Sjogren's syndrome statistics

Image courtesy of the Sjogren’s Syndrome Foundation

Sjogren’s is an autoimmune disease which affects the entire body, the vast majority of cases are seen in women (around 96%). The symptoms of the condition are scattered and, in many cases, not connected which means misdiagnosis or delayed diagnosis is very common. Take a look at some of the Symptoms of Sjogren’s.

Sjogren's syndrome symptoms

Image courtesy of the Sjogren’s Syndrome Foundation

What can you do to help spread awareness? Share your experience with Sjogren’s on social media with the tag #ThisIsSjögrens, and join the conversation on PatientsLikeMe to learn how others are managing their symptoms.

Meet others with Sjogren's Sydnrome

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“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month

Posted April 15th, 2016 by

In honor of Sjögren’s Awareness Month, we connected with PatientsLikeMe member Dana, a New Jersey-based poet and screenplay writer who was recently diagnosed. This isn’t the first time we’ve interviewed Dana — she was a member of our 2014 Team of Advisors!

Here, Dana talks about the daily challenges of living with Sjögren’s, an autoimmune disease often associated with rheumatoid arthritis that affects nearly 2,000 other PatientsLikeMe members. She also shares how she manages Sjögren’s along with her other conditions (bipolar II, depression and thyroid issues), and offers some advice to patients in her situation: “Take it moment by moment.”

Tell us about your diagnosis experience.

It started with pneumonia. After a batch of antibiotics, I was OK. Then I got a glandular infection. More antibiotics. Two months later and it was back again, it looked like I had the mumps, but it was my glands behind my ears again. My primary doctor suspected something and ran a complete blood work on me. Testing for RA and lupus and everything else.

I came back negative for RA, but positive for something called Sjögren’s syndrome and nothing else.

Most doctors only know that you get dry eyes and dry mouth from Sjögren’s syndrome. But there are more dangers to the body than just those two symptoms. I have chronic pain in my hips and my knees, which is strange since I have two total knee replacements. So it’s really not a joint issue. It’s a connective tissue issue. So my whole body aches and is sensitive to the touch, meaning if you just touch me, I feel pain where you touched me.

How would you describe Sjögren’s to someone who doesn’t have it – how does it affect your daily life?

Sjögren’s is a close cousin to lupus and is treated in the same way and with similar medication. I wake up early to take my thyroid medication. Then after light therapy for my depression, I can eat and take my Plaquenil for the Sjögren’s, and the vitamins and other medications for the bipolar and depression.

But during the first hour and a half, I am in pain. I have to take pain killers to function. I still get break-through pain from walking too much or sometimes from doing nothing but sitting.

I have something called “flare-ups” where the pain is so excruciating, even my daily meds can’t help me. So I have to take Prednisone for six days. This usually means I’m down for a week in bed, sleeping and dizzy and just feeling awful.

You never know when a “flare-up” will occur, so making plans to do future things is nearly impossible. I take it day by day and sometimes, moment by moment.

How has it been managing your Sjogren’s syndrome along with bipolar II, depression and thyroid issues?

It was very hard in the beginning. I had over 20 years to learn the ins and outs of dealing with mental illness. But I was clueless when dealing with chronic physical pain. Talk therapy doesn’t work when it feels like a knife is being twisted in your thigh.

I was lucky that I have medication which is working for me presently and at the time of diagnosis. I found an online support forum which answered many questions my doctors where unable to answer for me.

There are times when you do feel fine and the pain level is low and you just want to do EVERYTHING! But you have to pace yourself, or you will find yourself exhausted and unable to do anything. This is something I’m still working on, the pacing. You are so used to feeling bad, that even the small windows where you feel like a human being again have to be taken slowly.

Overall, it is very hard dealing with depression/BP/anxiety, etc. and not being able to walk some days or being so physically tired that it’s an effort just to get up to take care of yourself. But you do it.

What’s your best piece of advice to other people managing multiple conditions?

Don’t dwell on all the illnesses that may be on your plate. It will make you numb. Instead, just keep moving forwards. Adapt, improvise and overcome. I remind myself of this, because you have to adapt to whatever situation you are in and you have to improvise on different ways to look at your life and sometimes it may be dark, but you have the strength to overcome what you may be feeling at the moment. Take it moment by moment. Don’t look at the big picture, just the things YOU can effectively handle and change.

This month is all about awareness – what do you do to stay informed on the latest research and information about your conditions?

I read the forum posts and I subscribe to some newsletters. I find the most helpful information from the Sjögren’s Syndrome forum I frequent and I also read articles on the Sjögren’s Syndrome Foundation.

What was the most valuable thing you learned in your experience as a member of the 2014 Team of Advisors?

That we all have something in common, no matter what our illness may be. When I joined, I wasn’t diagnosed with any of the other physical ailments I have now, so there were times I felt out of place. But by listening to others talk about their experiences, I could apply my condition to their condition and learn a new outlook on where I was in my life.

 

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Getting to know our Team of Advisors – Emilie

Posted February 2nd, 2015 by

If you’ve been following the blog, you’ve already met three members of the PatientsLikeMe Team of Advisors – Dana who is living with bipolar II, Lisa who is living with Parkinson’s and Becky who is living with epilepsy. Now, we’d like to introduce Emilie, a social worker and therapist who is living with Sjogren’s Syndrome and fibromyalgia.

About Emilie (aka Memmie)
Emilie is a Licensed Clinical Social Worker (LCSW) who works with children living with chronic illnesses and their families. She’s also been a therapist for both children and adults with chronic illness and in her work has developed a pediatric diabetes pain management program. Emilie herself has an autoimmune disease, fibromyalgia — and recently had to resign from this work that she loves due to the pain, fatigue, and subsequent emotional strain. She hopes to return to doing similar work once her medical issues are more manageable.

Emilie on patient centeredness
Emilie believes the question should be asked, “what are the ways your health care provider(s) could be more helpful to you?” to better our understanding of patient centeredness. She believes that doctors need to listen to and respect that their patients know their bodies best.

Emilie on being part of the Team of Advisors
It was really special to be chosen, I didn’t ever in a million years think I would be chosen. When I got to the interview part I thought there’s no way they’ll pick me. When I found out I was chosen I was really excited because I felt like I had been to enough doctors in my life that I had something to share. I hoped that we could help researchers study the things that would be relevant to us — the collective us — instead of just the things they wanted to know and they wanted to study.

Being part of the Team of Advisors makes me feel like I’m more in control, like an expert about my own body. When you go to the doctor, they think they know exactly what’s happening — they’re going to treat it they way they treat everyone else with fibromyalgia or Sjogren’s or arthritis. It’s great to be able to have input to help doctors understand that we need to be treated as individuals and not like a disease name. Just because I have migraines, does not mean my migraines are the same as someone who just walked out of the exam room with migraines.

Others members on the site have contacted me because I’m on the Team of Advisors, and they’ve seen my picture or seen my name and have said “I’ve seen what you’re all doing, and I went to your page and I see you have some of the same things I do and I found you and I thought you could be a good resource for me.” So sometimes I’ve been able to help out and that has been nice.

Emilie on tracking on PLM
One of the things tracking my health on PatientsLikeMe has helped me recognize is that sometimes I think I’ve been feeling lousy forever — I think that’s easy for people with chronic pain to do — but when I look back at my InstantMe chart, I realize there are more days than I thought where I felt good. It gives me hope that things aren’t bad all of the time and that things can get better. When I go to my doctor and they ask me how things have been, I can tell them that things have been up and down, and sometimes there have been more good days than bad days.

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