Exercising with Vasculitis

The tips that follow are from my presentation at the 2019 Vasculitis Foundation International Symposium.

Unless you have lived under a rock your entire life, you probably have heard once or twice that exercising is good for your health. Exercise was deemed so crucial to long term health that the Department of Health and Human Services started releasing their own guidelines in 2008. The goal of the report was to provide Americans with guidelines based on scientific research to help everyone understand the types and amount of exercise needed to live a healthier and longer life. Research has shown time and time again that regular exercise can increase quality of life, decrease all cause mortality, and improve mental health. When you have been diagnosed with a chronic or life threatening illness, like vasculitis, it's extremely important that you continue to do things that are going to help improve your health. I know many of us often don't have the energy levels that we had pre-diagnosis, but that doesn't mean that exercise shouldn't be done. Below you will find 5 major benefits that exercise provides that I feel are particularly important to vasculitis patients, as well as guidelines to returning to activity after you've been diagnosed or been inactive for years.

1. Manage Stress & Increase Happiness
As most rare disease patients have found out, living with a chronic illness can send your mind off to civil war to join your body. Many patients get diagnosed with anxiety/depression/ or panic disorders. In fact I'd venture to say that the overwhelming majority of vasculitis patients have experienced depression or anxiety from there disease at one time or another. For some the feelings come and go but never linger, but for many of us it becomes a chronic condition that we must battle alongside our vasculitis. If you are like myself that involves trips to the therapist and trying countless anti-depression/anti-anxiety/anti-psychotic pills to "stabilize" your mood and help you survive the avalanche of negative thoughts that have you buried in misery. These pills are designed to help
smooth over the rough edges. To make the anxiety or depression bearable so we can live a productive life. But the reality is those pills, no matter how well you respond, don't solve the underlying issue. That's where exercise can help. If you have a good therapist or doctor, they will you assemble a toolbox of gadgets to help you navigate life with anxiety or depression. Science has shown that one of the best tools available is exercise 123. Exercise increases sensitivity to the hormones serotonin & norepinephrine, which are coincidentally the hormones most antidepressants or anti anxiety medications seek to regulate. The news gets even better. For positive mental benefits the intensity doesn't matter. Something as easy as a 20 minute walk in nature can give you the endorphin boost you need to elevate your mood. 


The bottom line: Living with a rare disease can cause anxiety and depression. While medications can be helpful, studies have shown exercise to be equally as effective at reducing these feelings.


2. Reduce Inflammation:
The inflammation response is an imperative part of the body's natural defense system against foreign invaders like bacteria or viruses. While the inflammation response is necessary to keeping us protected from pathogens, too much inflammation can lead to chronic illness. Vasculitis patients know all too well the harmful effects of out of control inflammation. With immune systems that are constantly overstimulated or bombarded with toxic medications to kill the off the out of control cells, we are always looking for healthy ways to maintain balance with the remainder of our immune system. While exercise can't cure vasculitis (believe me I've tried), it can help reduce the inflammation markers that can lead other diseases like Chron's, Diabetes, Celiac's, fibromyalgia, and arthritis. Once again, greater intensity doesn't equal better benefits. In fact for inflammation markers, greater intensities might have the opposite effects. Just one bout of 20 minutes of moderate treadmill exercise reduced inflammation markers by 5%. Regular exercise can help regulate the inflammatory response, which in turn can help prevent or control certain chronic/auto-immune diseases.


The bottom line: Vasculitis patients suffer from an out of control immune system. That coupled with the toxic medications needed to save our lives, can lead to an out of balanced immune system. Just 20 minutes of moderate exercise can help regulate inflammation markers in the blood, increasing the health of our immune system response.

3. Increase Bone Density & Muscle Strength
The saying goes, if you don't use it you lose it. As we age we must combat the lose of strength in order to maintain good health. Men after the age of 30, you begin to lose 3-5% of your muscle mass per decade. While women don't seem to lose muscle mass later in life at the same rate as men, they are at a higher risk for osteoporosis. Of the roughly 10 million American's that suffer from osteoporosis, approximately 8 million are female.  Less muscle mass, and weaker bones, mean less strength, less stability, which puts people at greater risk of falling, and breaking bones. correlated to life expectancy and longevity. These are all things that every adult needs to be proactive about, but it is of particular importance for vasculitis patients. Many of us have been on large doses of corticosteroids and/or chemotherapy drugs. Both of these medications independently can destroy your muscle mass and bone density. Together they make a lethal combination that can leave us weak and depleted versions of our former selves. While both aerobic exercise and strength training can increase muscle strength and bone density through their weight bearing stimulus, resistance training provides a stronger stimulus. The more modalities that you can do, the greater the benefits to your health. Unlike the previous benefits, intensity does matter for strength and bone density gains. The great the stimulus, the greater the gains.
It should also be noted that leg strength has been

The bottom line: With age and inactivity comes loss of muscle mass and bone density. Treatments for vasculitis patients exacerbate the issue. Weight bearing exercise can help slow or reverse these negative side effects.

4. Increase Sleep Quality
We do not sleep enough. More than 35% of Americans report sleeping less than 7 hours per night. 7 hours is considered the bear minimum amount of sleep needed for proper rejuvenation. According to the CDC, adults who reported sleeping on average less than 7 hours per night had an had increased risk factors for heart attack, stroke, heart disease, asthma, cancer, arthritis, depression, chronic kidney disease, and diabetes. Correlation does not equal causation, but the studies linking lack of sleep to poor mental performance are clear (1,2,3). They have shown that lack of sleep can lead to poor decision making, depression, and destroy performance, both mentally and physically. When we are tired, we make worse decisions. When you are drained, it's easier to reach for the candy bar, a cigarette, or other substances for a pick me up. It's also harder to find the energy needed to exercise. So if you want to live a healthier life, you must sleep more.

Many people know they should sleep more or exercise more, but they often lack the energy to do it because they can't fall asleep. In today's society people are busier than ever, and when we lay down at night to go to sleep, it's often hard to turn the brain off and truly rest. Your mind is stuck worrying about what you didn't get done that day, and the gigantic list of things ahead. One way to increase your ability to sleep better is exercise. Regular exercise can increase relaxation and help you sleep better (1,2) Another study showed that 150 minutes (~20 minutes per day) of exercise per week for 16 weeks can increase your sleep quality by 65%. Now I know it can be a circle argument with yourself. You're too tired from poor sleep to exercise, and therefore you don't get better sleep, but if you can find the will power to get out the door and start exercising, it will help you sleep better.

The bottom line: For many patients on corticosteroids and many other medications needed to keep us stable or alive, they effect our sleep patterns. So it's important do to things that promote healthy sleep habits. Our bodies' are at civil war and need the rest and recovery.

5. Teach you about your body
If you have never felt great, you don't know what feeling good is truly like. For many people they find little time to take care of themselves. It's been years since you exercised regularly (possibly decades), eaten a balanced diet, and slept well enough to be recovered for the next day. If you don't do these things on a regular basis, it's impossible for you to feel your best. When you take care of yourself regularly, you begin to learn and expect what your body will feel like on a daily basis. You start to learn how your body responds to stress, how it responds to exercise, how it responds to certain foods, and ultimately help you find the proper balance to be at your peak. For vasculitis patients this can be extremely important. Learning the ebs and flows of your disease can help you provide valuable knowledge to your doctors. The more data you can give doctors about your current health, the better they are able to treat you. While blood work and imaging are fantastic ways to help track diseases, they are only snapshots in time. The best doctors take into account their patients physical feelings, when deciding on treatment plans. I know for myself, thanks to my acute awareness of how my body should feel when running at such disgusting speeds, I have been able to detect all 3 of my relapses before they showed up on any blood work. Now two of those lead to quicker treatment times, the third I continued to lie to myself about what I was feeling, and tried to chalk it up to other things. In the end that made the third relapse much worse because I didn't listen to what my body was telling me. The stories go on beyond vasculitis patients. Runners have been known to catch heart attacks or strokes immediately because of their canny ability to understand their body.

The bottom line: Exercising regularly makes you feel better. It forces you to pay attention to your body and learn your own rhythms. When you know how you are supposed to feel, it's much easier to detect when things are going wrong.


The questions as a coach I get very often is, how do I start? Many people haven't exercised since they were kids. So it's understandable to not know how to start. Below you will find my tips to getting out the door and living a healthier lifestyle.

1. Talk to your Doctor
2. Start slow
3. Listen to your body
4. Learn when to push/when to rest
5. Don’t increase load from week to week by more than 10%
6. Exercise with friends
7. Do a variety of modalities
8. Set goals
9. Goal should be 3-4

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