Sjogren’s Disease: It’s not in your head, but psychological approaches can help

Psychological approaches don’t necessarily mean you need therapy

Here is my presentation from the 2023 Sjogren’s Summit: It’s Not in Your Head, but Psychological Approaches Can Help.

The transcript is below the video if you prefer reading.

Click here for study references.

When Your Doctor Says “I’m Referring You to a Mental Health Provider”

Has this ever happened to you? You tell your doctor about number of different symptoms. And somewhere along the line the doctor says, “I want to refer you to a mental health provider.”

Now it could be for one of two reasons and they probably aren’t saying all of this out loud. But one reason could be

• because they think that it’s all in your head.

• The other reason could be that they’re aware that even if they can’t find a diagnosis for you, psychological approaches can still help you feel better.

The Stress-Sjogren’s Connections

So what I’m going to talk to you about today is that second point, I’m just gonna give your doctor the benefit of the doubt and assume that he or she is thinking the second one.

But if you’re not sure why or how this would apply to you let’s just start first by talking about why.

How Stress Management Techniques Can Help

What I want to talk to you about now is the how the psychological approaches can help. There are three methods that I’m going to talk to you about today. First was breathing. Next one is present moment awareness. And the last one is about generating positive emotions. First though, I said I was going to talk about breathing and there’s a whole lot of reasons why I want to talk about breathing. So let’s take a quick look at this.

Heart Rate Variability

Okay, so what you just saw in that video, there was a little bit of an explanation of something called heart rate variability. That is our hearts tendency to have a variation in the rate that it’s beating under different circumstances. And when somebody’s nice and calm, as they breathe in, the heart rate will pick up a little bit. And as they breathe out, heart rate will slow down just a little bit.

So why is sjogrens patients do we care about thing called heart rate variability? Well, because researchers believe that it is a window into the functioning of the vagus nerve.

The Vagus Nerve

I’m sure you’ve heard of the vagus nerve. If you’re not familiar with what it is, it is a nerve that runs from the brain to different organs in our body and helps control things like heart rate, breathing, digestion, other things that we think are out of our voluntary control.

Now, a really neat thing about the vagus nerve is that different from a lot of the other nerves in the body. Many of the nerves will go either from the brain to an endpoint in the body or from something in the body to the brain. Well, the vagus nerve actually has pathways that go both directions. So this way, the vagus nerve can tell the different body parts to do what they’re supposed to do. But it also can listen to the body parts that say these conditions are happening. And so we need to alter what we’re doing.

And as a matter of fact, the vagus nerve is so important in maintaining the health of the body, that researchers are beginning to study what happens when you physically stimulate the vagus nerve, and what kind of effects it can have on different medical populations.

Vagus Nerve Stimulation

Now really quick, I just want to explain what I mean by Vagus Nerve Stimulation. It’s either going to be something called invasive where they literally implant a device under your skin that sends a signal to your brain, which travels along the vagus nerve. Or you can have something that’s non invasive where you hold a device up to your neck right next to the carotid artery. And it does just the same thing. It sends a signal to your brain and the signal travels along your vagus nerve.

Invasive Vagus Nerve Stimulation for Rheumatoid Arthritis Study

Now when it comes to conditions like rheumatoid arthritis and sjogrens, there are actually some studies out there that I want to tell you about. For one example, one study took patients with rheumatoid arthritis who were not responding to the conventional medical therapies like the biologics or methotrexate, and what they found was the patients that used the vagus nerve stimulation with the implantable device, ended up having improvement in their symptoms, but also interestingly, reduction in inflammatory markers.

And then what they did was they took a two week hiatus where they, I guess, deactivated the device for two weeks. And during those two weeks, what they found was the symptoms started to creep back up. And inflammatory markers started to creep back up as well. And then when they reactivated it after the two weeks are over, everything started to come back down again.

Non-Invasive Vagus Nerve Stimulation for Sjogren’s Disease Study

Now another study I want to tell you about is using a non- invasive device, and the study population was patients with primary Sjogrens. And I’m using the word primary because researchers use primary to give it more of a pure sample. So they don’t have any other questions. Well, could it be because of this or because of that other disease getting in the way of our results? Now in this particular study, what they were measuring was fatigue scores, which is really important to a lot of us with Sjogrens and also inflammatory markers in the blood.

And they took these measurements, three points during the study. The first time was before they did the treatment. The second time was after seven days, and third time was after 28 days.

And each person in the study was given a handheld device to take home with them. And they were instructed to use the device twice a day, one for 90 seconds on each side of their neck. over each carotid artery. So total, three minutes, twice a day.

So what did they find? Well, as the study progressed, they found improvements in fatigue scores over the course of the study and about half of the subject, almost half of the subjects, they reported about a 30% reduction in fatigue. So I mean, it’s not completely getting rid of the fatigue altogether, but it’s a big improvement in if you’re living with that much fatigue that’s that’s welcomed.

And then also what they found was over the course of the study, inflammatory markers also improved. And the one that improved the most was something called tumor necrosis factor, which is the inflammatory marker that is targeted when you take biologic medications.

Use These Techniques to Help Your Mind and Body Talk to Each Other and Calm Things Down

Okay, but here I am doing a talk about psychological approaches that you can use to help yourself feel better. So then why the heck am I telling you about stimulating your vagus nerve with an electrical device? Well, here’s why:

If you remember from just a little bit ago, researchers believe that heart rate variability is a window into how well your vagus nerve is functioning. And don’t forget the vagus nerve sends information in both directions. So if you can get that heart rate variability improved through another method, than you just might be able to help the vagus nerve help the body do what it needs to do.

And the approaches that I’m going to talk to you about don’t carry the risks or have the side effects that you would with vagus nerve stimulation. So I guess it’s no surprise that the first technique that I want to talk to you about is deep breathing.

Wait a Minute! What About Heart Rate Variability and POTS, Dysautonomia?

But first, I do want to mention one thing that some of you may have in your minds when you’re talking about your heart rate. You may be thinking but I have POTS (postural orthostatic tachycardia syndrome) or dysautonomia (dysregulation of the autonomic part of the nervous system), and that’s completely valid.

I wanted to point out that the researchers that I’m going to be talking about here, recognize that that’s an issue. There was a review that I read on studies looking at the relationship of heart rate variability, and the part of the nervous system that controls things like breathing and heart rate. And it looks pretty reliable in this in the research that patients with autoimmune diseases have abnormal heart rate variability,

In particular, one of the studies mentioned in this review was looking at patients with rheumatoid arthritis, and they divided them into two groups. One group had only the rheumatoid arthritis. And the other group actually also had what they were calling secondary Sjogren’s And unfortunately, what they found is the patients with both Sjogren’s and RA, the dysfunction was a little bit worse. So this heart rate stuff’s real important for us.

Back to the Psychological Approaches: Breathing

The good news is there’s promising research that is pointing to heart rate variability can be improved with deep breathing, and that’s what I want to tell you about now. Now next, I want to tell you about two different studies that involve deep breathing and autoimmune patients. Now I do realize they’re not Sjogrens patients that’s just unfortunate state of the research that for rheumatoid arthritis and lupus, this is pretty darn close.

Now the first study I want to tell you about the researchers were looking at a couple of different things. First thing they wanted to do was find out is did they have a different average heart rate variability at the beginning before they did any of the deep breathing, then the healthy controls and they turned out yes, they did have a significant difference in heart rate variability, so there was less variability in the autoimmune patients at the start.

Heart Rate Variability and Breathing Exercises

Now the actual deep breathing exercise consisted of inhaling for four seconds, and exhaling for six seconds, and they did this with a visual guide so people could stay in sync with it. And it came out to about six breaths per minute. Then they also did it on two separate days to see if the results that they get would be reliable. And more of that good news I was telling you about. They did find that even though at baseline, their heart rate variability was, I guess you’d say impaired somewhat compared to healthy controls. It still did have a significant improvement after the deep breathing exercise. And these results actually were repeated the second time they took the measurements, so it was a consistent, reliable effect.

And the other study I want to tell you about was a little more straightforward. This one they took 57 patients with RA and lupus. And they started the study similar to the other one where they took readings of heart rate and variability before they did anything and then they had all the subjects do 30 minutes of deep breathing and then after the breathing exercises, overall, they had a slower heart rate fewer beats per minute, on the difference between the heartbreak when they inhale, and when they exhale, the difference was greater.

Present Moment Awareness/Mindfulness

Now want to just take one second, I want you to think about something when you’re trying to sync your breathing with a visual cue or counting what’s happening in your mind. Your mind is focused on the counting and the visual cue. And it makes it real hard for you to be thinking about things that happen in the past or worry about things that are in the future. Your attention is very much focused in the here and now. Or in other words, your awareness is completely tuned in to the present moment.

And the concept of present moment awareness is a very large part of what we would call mindfulness meditation. It’s not everything that mindfulness means, but it’s a very big component of that type of mental activity.

But before I go any farther let me just really quickly tell you what mindfulness is.

Mindfulness Explained

When you think about attention, you realize it can only hold so much at any one point in time. So when we talk about mindfulness, what we’re saying is filling that space of attention with what’s here in this very moment. Right now, right now, and right now. You could think of it as telling yourself the priority, for what gets space in your head right now is just what your senses are picking up. And it’s okay to put down everything else that’s on your mind right now.

And you’re remaining non judgmental about any thoughts, emotions, and physical sensations that arise during the moments that you’re being mindful. And these mindful moments can be spontaneous and formal. Or you could do it formally and set aside time to do it.

Now, let me tell you a little bit about why this is useful for us. There was a good chance that living was Sjogren’s, you’ve also got some kind of chronic pain. And there’s research showing that using mindfulness can help us reduce some of that chronic pain. And not surprisingly, there isn’t any research out there yet about Sjogren’s patients and mindfulness for chronic pain. But there is research out there about rheumatoid arthritis pain.

Mindfulness and Chronic Pain

First study talks about arthritis patients who are receiving typical therapy involving education as well as their standard therapy. And those who added Mindfulness Based component to it ended up having self reported pain levels that were significantly lower than the group that received education alone. And researchers believe that this is because when we can cope better with the pain that we’re feeling, it makes the intensity of it a little less, so it’s easier to live with.

Mindfulness Helps Skin Clearing in Psoriasis

So what about something that’s easier to measure than somebody’s self report? Well, you can do that by looking at skin lesions on somebody with psoriasis, for example.

Researchers studying psoriasis had patients that were getting the traditional UV light therapy in addition to their medication. But what they did was divided that group of patients into two: one group did the same treatment, but added a mindfulness based component while they were using their light therapy. And they compared how quickly the skin lesions on the patients in each group got to several different points in time.

What they found is the patients who were using the mindfulness component, in addition to the light therapy and medication, that to the halfway clearing point, and complete clearing point significantly faster than those who just had the traditional therapy alone.

Another benefit of present moment awareness is that you’re much more likely to be able to make a conscious decision about what to think rather than have your emotions dictate what you’re thinking about. Which brings us to the next topic, generating positive motions or states of mind.

Generating Positive States of Mind

A few years ago, researchers wanted to know about the relationship between a person’s tendency to have certain moods dates, and how their immune system works. What they did was they gave surveys to over 2000 healthy adults and asked them questions about how often they feel different types of emotions. So how often do they feel joy? How often do they feel rage, different things like that. And then they also measured a number of different types of immune cells.

And what they found was it the people who were able to lift their own moods without needing input from another person or environmental circumstance, had better immune system outcomes. So the take home message from that is that if you’re able to generate your own positive feelings, you’re going to be better off.

And that brings me to the last study that I want to talk about, which is about positive affect, or mood, journaling.

Positive Mood Journaling

Researchers at Penn State University wanted to expand on previous studies that already said that people with medical conditions who do journaling that’s focused on positive things that make them feel good, show improvement in different health outcomes, but they wanted to know if you can do it online and still have improvement.

They recruited 70 medical patients from the hospitals on campus 27% of which had an autoimmune disease and divided them into two groups. One group spent 12 weeks journaling three times a week about something that was positive, so some in some way that they were finding meaning in their illness, or something they were grateful for, something they were proud of, or just felt good about.

And the other half of the subjects was put on a waiting list. And after the 12 weeks what they found was that the patient, the positive journaling, reported at the end feeling less distress, and had fewer days filled with pain.

What’s the Take Home of All These Approaches?

So the take home for all of this that I’ve talked to you about today are three main points.

• First, remember to breathe. You’d be surprised if you were to pay attention. You may find yourself holding your breath when you don’t even know you’re doing it.

• Next, when you think of it, make an effort to be mentally present. You probably have a lot of examples where you find that you walked into a room and you forgot why you did it. Or you put your keys down and don’t know where you put them. Well that’s because your mind wasn’t in the room with you.

• And finally, as often as you can think of it is something to smile about. Do it through the day. Look for the humor in difficult situations. And if it works for you sit down on a regular basis and write about those things that make you feel good. You may discover it has more of a lasting effect than you expected.