"While traveling can be hard on our bodies, being prepared will help."

Spring tends to bring with it increased POTS symptoms. As we gear up for warmer weather, I want to share my tips for living with POTS.

Hereditary alpha-tryptasemia is associated with elevated basal serum tryptase levels and multisystem complaints, including GI and connective tissue symptoms.

Eating Disorders and POTS: A Correlation In the world of dysautonomia, you may know that there are comorbidities that can exist for varying disease states. For instance, if you have POTS there’s a large chance you also have Ehlers-Danlos Syndrome, or EDS. According to this study published in 2020, approximately 31% of POTS patients also met the criteria for hEDS while an additional 24% met the criteria for generalized joint hypermobility. EDS is a group of inherited connective disorders that affect your skin, joints, and more. POTS, or postural orthostatic tachycardia syndrome, is a blood circulation problem that causes a myriad of symptoms including rapid heart rate. More on this relationship in a later blog. There’s a correlation between these two diseases. Many conditions often go together, called comorbidities, and are not well understood. POTS, while not exactly “new” is still under researched and in general not very well understood in the medical community. Eating Disorders and POTS Let’s talk about the correlation between eating disorders and POTS as this topic has recently been making waves in the POTS community. Eating disorders are classified as a group of serious mental and physical illnesses that can affect any living person. No one knows for sure what causes these disorders, but according to NEDA, the National Eating Disorder Association, it is suspected that biology, society, and psychological factors are at play. Now that we have defined what eating disorders are, let’s talk about how it relates to POTS. A study was published in May 2021 discusses the connection between eating disorders and POTS. In that study, it was found that nearly three quarters of participants were found to engage in restricted eating and more than half of them reported weight loss. Not surprisingly, many also talked about gluten intolerances and chronic allergies that may have been Mast Cell Activation Syndrome (another comorbidity of POTS). With a myriad of issues affecting the average POTS patient, it’s no surprise that there is restrictive eating. Correlation Does Not Mean Causation The previously mentioned published study was an interesting look at the world of eating disorders and how it can affect patients with POTS. Most POTS patients meet the typical demographic affected by eating disorders; females in their teens or young adults. One of the first things that patients with POTS come to understand is that their diet needs to be monitored and certain changes need to happen to manage their symptoms. It’s important to know that just because there’s a correlation between POTS and eating disorders, it does not mean that POTS has caused (or will cause) an eating disorder in you. Currently, there is little research into the relationship between the two conditions. In general, we know that people with all disabilities have stressors that can lead to the development of eating disorders. With less data on the subject, it’s almost impossible to narrow down the cause. What Can I Do? Knowledge is power. Keep an eye on what you’re eating, ensuring that you’re getting proper nutrition along with keeping your sodium intake up. If you suspect you may have an eating disorder, talk to your doctor or psychologist.

Recently I had a terrible flare up, and someone asked me "what exactly does that feel like? How was a flare-up different from the usual pain of my Ehl

Tips for comfort in your bedroom

Have you recently been diagnosed with Ehlers-Danlos syndrome but still have symptoms that don’t appear to be directly related? Do you have a friend who is incre

It's the dreaded advice you know your physician is going to eventually bring up. Exercise. But, it's been way. too. long. since you last exercised. You're not even sure if you can do a sit up without passing out. Maybe you were a marathon runner before your diagnosis. Or, maybe you were the average couch potato who enjoyed reading books more than running down the street. The fact remains that you are not tolerating exercise well. WHAT IS EXERCISE INTOLERANCE Exercise intolerance is a condition in which a person experiences symptoms such as shortness of breath, fatigue, or chest pain when they exercise. These symptoms can occur even when the person is exercising at a level that is normally expected for their age and size. There are many causes of exercise intolerance, including heart disease, lung disease, anemia, and even some chronic illnesses such as POTS, or postural orthostatic tachycardia syndrome. As someone with chronic illness, have you found yourself sucking in air by going up a flight of stairs? What about just going to the mailbox in the heat? You may have exercise intolerance. Let's look at the symptoms. SYMPTOMS OF EXERCISE INTOLERANCE Shortness of breath Fatigue Chest pain Lightheadedness Dizziness Nausea Vomiting Muscle cramps Right. Okay, so those symptoms are basically your life. UGH. If you experience any of these symptoms during or after exercise, it is important to stop exercising and rest. We know, we know. If you stop you might never start again. That's okay. If you find it difficult today, try again tomorrow. The point is consistency. If the symptoms are severe or do not improve with rest, you should see a doctor. POTS AND EXERCISE INTOLERANCE Postural orthostatic tachycardia syndrome (POTS) is a condition that affects the autonomic nervous system, which controls involuntary body functions like heart rate, blood pressure, and breathing. People with POTS often experience a rapid increase in heart rate when they stand up, which can lead to symptoms like lightheadedness, dizziness, and fatigue. One of the most common symptoms of POTS is exercise intolerance. This means that people with POTS may have difficulty exercising or may experience worsening symptoms after exercising. There are a few reasons why exercise intolerance can occur in people with POTS. Reduced blood volume: People with POTS often have a lower blood volume than people without POTS. This can make it difficult for the heart to pump enough blood to the brain and other organs when they are upright, which can lead to lightheadedness and dizziness. Improper blood distribution: The autonomic nervous system is responsible for distributing blood throughout the body. In people with POTS, the autonomic nervous system may not be working properly, which can lead to improper blood distribution. This can cause symptoms like lightheadedness, dizziness, and fatigue. Muscle weakness: People with POTS may also experience muscle weakness. This can make it difficult to exercise and can lead to worsening symptoms after exercising. HOW TO EXERCISE WITH POTS Your doctor finally said it to you, didn't he? He said that the next step to managing symptoms of POTS is exercise. Or, maybe you are simply desperate enough to try anything even if it means borrowing from tomorrow's energy levels (hello, spoonies!). Here's some great tips on how to manage starting an exercise routine: Start slowly: It is important to start exercising slowly and gradually increase the intensity and duration of exercise over time. Listen to your body: It is important to listen to your body and stop exercising if you start to feel lightheaded or dizzy. Stay hydrated: It is important to stay hydrated before, during, and after exercising. We recommend drinking a NormaLyte before and after an exercise routine. Not sure how much NormaLyte to drink? It's best to ask your physician. Elevate your legs: If you start to feel lightheaded or dizzy, elevate your legs to help improve blood flow to your brain. Take breaks: What's the saying? Rome wasn't built in a day (wiki it here). If you need to take a break during exercise, do so. It is better to take a break and continue exercising later than to push yourself too hard and worsen your symptoms. If you have POTS and are experiencing exercise intolerance, talk to your doctor. They can help you develop a personalized exercise plan that is safe and effective for you. Here are some additional tips for managing exercise intolerance with POTS: Choose exercises that are low-impact and do not require a lot of standing. Exercise in a cool, well-ventilated environment. Wear compression stockings or garments to help improve blood flow. Stay hydrated before, during, and after exercising. Gradually increase the intensity and duration of exercise over time. Listen to your body and stop exercising if you start to feel lightheaded or dizzy. What kind of exercise program worked best for you? Give us your best POTS exercise tips below!

Which of these shoes have you tried?

I have discovered a few things that really help the symptoms of POTS and thought it would be good to share for others who may not know about them, they are simple but seem to help me a great deal a…

In recent years, an association between hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS) has garnered attention and patients are increasingly presenting with this triad. However, a real relationship between these entities is unclear due to a lack of scientific validity. We conducted an extensive review of the literature using two different search strategies. A narrower strategy included 88 searches of various combinations of terms for each of the three conditions, yielding 19 unique papers. A broader search included 136 searches of various combinations of terms but included all forms of EDS and yielded 40 unique papers. Of these, only four and nine papers from the narrower and broader search strategies were original research articles. None of these papers resulted from a combination of the search terms for the three conditions. All three clinical entities are controversial in either existence or pathogenesis. MCAS is a poorly defined clinical entity, and many studies do not adhere to the proposed criteria when establishing the diagnosis. Patients previously diagnosed with EDS hypermobility type may not meet the new, stricter criteria for hEDS but may for a less severe hypermobility spectrum disorder (HSD). The pathophysiology of POTS is still unclear. An evidence-based, common pathophysiologic mechanism between any of the two, much less all three conditions, has yet to be described. Our review of the literature shows that current evidence is lacking on the existence of MCAS or hEDS as separate or significant clinical entities. Studies proposing a relationship between the three clinical entities are either biased or based on outdated criteria. The reason behind the purported association of these entities stems from an overlapping pool of vague, subjective symptoms, which is inadequate evidence to conclude that any such relationship exists.

EDS is a complex illness and can cause many serious physical issues beyond simply "being flexible."

We use mobile devices more than ever. We are the mobile generation. We are also a sore generation. Let's talk mobile device ergonomics for hypermobili

If you have any form of dysautonomia you are familiar with flares. Let’s back up a minute and talk about what dysautonomia is. What is dysautonomia? Dysautonomia is a dysfunction of the nerves that regulate involuntary body functions, such as heart rate, blood pressure, and sweating. The word literally stands for DYS - dysfunction, and AUTO - autonomic. It is an umbrella term for a myriad of different diseases, but some of the most common are: postural orthostatic tachycardia syndrome (or POTS), orthostatic intolerance (OI), orthostatic hypotension, and more. What are chronic illness flares? People with chronic illness have a variety of symptoms. For example, with POTS it’s often fatigue, brain fog, rapid heart rate upon standing, syncope (fainting), pre-syncope (feeling like you’ll faint, or often called dizziness), migraines, and more. A person who is managing their illness well may not have all of these symptoms every day. Maybe it’s just a couple or none at all. When you’re “in a flare” usually the symptoms you’ve been managing are exaggerated. The slight headache you were feeling is now a full on migraine. The fatigue has you unable to leave the bed that day. A flare in the world of chronic illness is an exacerbation of a chronic disease. What causes chronic illness flares? Flares happen when symptoms you’ve been having suddenly show up and seem to be 10x worse than they were. Often, it’s not your fault. Flares can come and go and you may not be able to pinpoint a trigger. And, there’s no use in blaming yourself anyway. Sometimes your body just decides to go haywire despite anything you’ve done right or wrong. Other times flares can be brought on by overdoing something. Maybe you walked too much. Maybe you stayed up too late or ate like crap the day before. Do not blame yourself. It’s your disease that is making you feel this way and you should be able to enjoy life the same way anyone else does. But, you don’t want to live feeling like crap. Here’s some triggers we’ve seen commonly reported by people who have POTS. 6 Triggers for Chronic Illness Flares Heat and Humidity. Most people with chronic illness will tell you that heat can cause flares. If you’re someone with POTS, heat intolerance is often one of the symptoms. You just don’t sweat the way a “normal” person would, and even if you could you lose fluids. Exposure to heat seems to never fail to make your symptoms worse, but luckily there’s easy ways to avoid the heat putting you into a flare. Over exerting yourself or standing too long. Your friends were going to the water park, and you really wanted to join. Or, maybe it was just an evening out listening to music at a local hotspot. A trip to the grocery? Whatever it was, you’ve over exerted yourself. Know the limits to your body and respect them. If you know that you’re not able to avoid an overly physical day you may want to consider additional electrolytes like NormaLyte to keep your hydration levels up. Certain foods. There is a study that discusses the relationship between POTS and gluten intolerance. Now, keep in mind that a gluten intolerance doesn’t mean celiac’s disease, but it does mean that your body may not be able to process gluten as efficiently. If you’re one of those “lucky” few you may need to be extra careful around certain foods. There’s also MCAS, or mast cell activation syndrome, which is essentially your body having an allergic reaction in a big way. It’s also common with people who have POTS, and it can also lead to flares when acting up. Your menstrual cycle. It’s really unfair. Not only that we have this curse, but also that it can make the most put together and healthy person fall down. Then add chronic illness. It’s not in your head. Your menstrual cycle when you have POTS and the natural ebb and flow of hormones during a month can definitely put you into a flare. Again, extra electrolytes like NormaLyte can potentially prevent your period from putting you into a flare. Caffeine. This is a hotly debated item in the world of POTS. Some say it’s the only thing that can get them through a day while others claim it’s the devil for their symptoms. But, it’s all up to your body. If you suspect that your daily cup of joe is causing your body to go whacko then maybe try eliminating it from your diet. We know that sounds painful too (it really does!), but knowing if caffeine is the thing putting you into a chronic illness flare can mean better days ahead. Alcohol. I know. We are not going to be popular by telling you to not only put down the coffee but to also put down your glass of wine. Alcohol is something that can dehydrate you. The more drinks you have the more urine output you’ll have as it’s a natural diuretic. There is a possibility that the one or two drinks you have tonight will affect you not only tomorrow but for the rest of the week. Weigh your choices carefully. And, if you do decide to imbibe be sure to have an electrolyte backup plan. What do I do about a chronic illness flare? Avoid the triggers. You may know additional triggers that can make your symptoms of POTS go into hyperdrive. Do what you can to avoid them all. Do it with the knowledge that you will not be able to prevent a flare. As mentioned above, flares are sometimes unavoidable. If you think you’re experiencing a chronic illness flare from POTS you may want to consider increasing your sodium intake. NormaLyte has been clinically proven to manage symptoms of POTS. Something other brands can’t say. Our Normalyte PURE was created in partnership with Dysautonomia International specifically for people with POTS. We know it will help if you can only give it a try.

Are you interested in learning more about trying an exercise protocol for your POTS? Talk to your doctor(s) before trying this, but if you want to know more from the patient perspective, check out my journals of my experience. In these posts, I’m doing the CHOP POTS protocol (Children’s Hospital of Pennsyvalnia). Month 1: “Well, […]

Discover these POTS diet and nutrition tips that can help you manage POTS symptoms after eating and throughout the day.

Learn about the symptoms and management of postural orthostatic tachycardia syndrome (POTS) to bring down its risk for a healthier outcome.

POTS has tachycardia symptoms that could influence the severity of Adrenal Fatigue in those suffering from this condition.

Find holiday gift ideas for ehlers danlos patients that help to manage symptoms and improve mobility. These are my top picks!