POTS and hypermobility are two distinct medical conditions, but recent research suggests that they may often occur together, creating a complex set of symptoms for affected individuals. Unfortunately, medical providers often dismiss patients who are in this camp. Patients frequently struggle with medical gaslighting because of this lack of knowledge and understanding of these two conditions.
We’ve worked with many patients with Postural Orthostatic Tachycardia Syndrome (POTS) and hypermobility, which is why we’re passionate about this topic.
This article will provide an in-depth understanding and overview of these conditions, their connection, and practical strategies for managing them from both a provider and professional standpoint.
What is Postural Orthostatic Tachycardia Syndrome (POTS)?
POTS is a specialized form of dysautonomia, a disorder of the autonomic nervous system (ANS) that affects involuntary bodily functions such as heart rate, digestion, and blood pressure. The ANS controls the “automatic” processes of the brain and body that you shouldn’t have to think about, like those previously listed.
The defining feature of POTS is a significant increase in heart rate (tachycardia) when moving from lying down to standing. Sadly, as many patients will attest, this can also occur for no specific reason.
People with POTS often experience dizziness, lightheadedness, fainting, fatigue, and brain fog. Unfortunately, there is an extensive range of symptoms that patients can experience due to the far-reaching effects of the autonomic nervous system.
Case in point: POTS and hypermobility together often create symptoms that individuals with POTS or hypermobility wouldn’t experience in isolation.
POTS symptoms primarily occur because the body has difficulty regulating blood flow and maintaining stable blood pressure. Still, once again, many symptoms can occur globally due to the variability of the condition.
Common Symptoms of POTS
- Rapid heart rate (tachycardia) when standing.
- Dizziness or feeling lightheaded, especially when changing positions.
- Fatigue and general weakness.
- Brain fog which affects concentration and cognitive clarity.
- Fainting or near-fainting episodes (syncope).
- Nausea or digestive problems.
- Chest pain or palpitations.
- Temperature intolerance or inability to regulate temperature
These listed symptoms can vary in intensity and may be influenced by dehydration, stress, physical activity, or illness. POTS and hypermobility share commonalities, but when dealing with POTS in isolation, patients with symptoms should get an initial assessment by a cardiologist to rule out structural issues of the heart.
Diagnosing POTS often requires tilt table testing or monitoring heart rate and blood pressure in different postural positions. Patients should have ECG and stress tests performed before pursuing tilt table testing. These tests as it can allow for a quicker diagnosis and potential intervention.
Understanding Joint Hypermobility
Joint hypermobility refers to a condition where the joints move beyond the normal expected range of motion. This increased flexibility can occur naturally, but in some cases, it may indicate an underlying connective tissue disorder, such as Ehlers-Danlos Syndrome (EDS).
Hypermobility is not necessarily harmful. Yet, when coupled with pain, frequent joint dislocations, or other symptoms, it can lead to a diagnosis of hypermobility spectrum disorder (HSD) or EDS.
POTS and hypermobility can coincide and trigger symptom onset due to their ability to change the tensile properties of connective tissues and underlying structures. This complex web of issues can significantly change a person’s quality of life.
Symptoms of Joint Hypermobility
- Joint pain and stiffness, especially after physical activity.
- Frequent joint dislocations or subluxations (partial dislocations).
- Soft, stretchy skin, particularly in cases associated with connective tissue disorders.
- Muscle fatigue and weakness.
- Digestive issues such as indigestion and irritable bowel syndrome (IBS).
For many, hypermobility is a lifelong condition that requires ongoing management. Some may only experience mild symptoms. And yet, others may face significant challenges in daily life due to pain and mobility issues.
The Link Between POTS and Hypermobility
Research has shown a notable connection between POTS and hypermobility of the joints, particularly in individuals with hypermobile Ehlers-Danlos Syndrome (hEDS). Studies suggest that up to 20-30% of individuals with POTS also have hypermobility. Because of this, there is a heavy indication of a potential overlap in the underlying mechanisms of both conditions.
While the data is still early, it’s pretty convincing. Especially when hearing patient testimonials about their symptom onset, problems with getting diagnoses, and the lack of education in the scientific community.
How Hypermobility Contributes to POTS Symptoms
As previously stated, the autonomic nervous system plays a crucial role in regulating automatic processes like blood pressure, digestion, temperature regulation, and heart rate. Based on this notion, it makes sense why POTS and hypermobility would create dizziness, fatigue, and lightheadedness symptoms.
In individuals with hypermobility, connective tissue weakness may impair blood vessel function, causing difficulty maintaining blood flow when standing. These issues can contribute to the development of POTS symptoms. When this happens, the body struggles to compensate for the reduced blood return to the heart.
These structural issues can trigger neurological outcomes that seem generalized in nature. Additionally, the laxity of blood vessels and joints in people with hypermobility may exacerbate the difficulty in regulating blood pressure. This can lead to the characteristic symptoms of POTS when standing or sitting upright for extended periods.
Common Challenges of Living with POTS and Hypermobility
Living with both POTS and hypermobility can be challenging, as the symptoms of each condition may exacerbate the other.
For example, the fatigue and muscle weakness caused by hypermobility can worsen the dizziness and fainting associated with POTS. Similarly, POTS symptoms such as dizziness and nausea may make it difficult to engage in physical activities. This factor further complicates the joint pain and stiffness often accompanied together with it.
It’s a double-edged sword.
The impact on quality of life can also be significant. Because of the unpredictability and severity of their symptoms, many individuals experience difficulty performing daily tasks, maintaining employment, or engaging in social activities.
And if you follow the support groups for both POTS and hypermobility, you will hear story after story of people who struggle with their symptoms. As sad as it is, there are options to help these patients live a high quality of life. It just takes finding the right provider(s) who are willing to work together to find answers.
Managing POTS and Hypermobility
Sadly, there is no known “cure” for POTS or hypermobility. Yet, there are a variety of treatment options that can help improve symptoms and optimize quality of life. Here are some practical strategies for managing these conditions:
POTS and Hypermobility Lifestyle Adjustments
Increase salt and fluid intake: For individuals with POTS, increasing salt and fluid consumption can help maintain blood pressure and improve blood flow. Electrolyte-rich drinks are particularly beneficial but not always necessary, as electrolytes are found in whole foods.
Compression socks and garments: Wearing compression stockings or abdominal binders can support blood flow, reducing dizziness and fainting episodes. These may be temporary options, as they don’t treat the root cause of the symptoms. With that said, they can temporarily alleviate symptoms when implemented.
Elevating the head of the bed: Sleeping with the head elevated can help prevent significant drops in blood pressure upon waking. It can also help to decrease the frequency of symptoms when used consistently.
Physical Rehabilitation and Therapy
Gentle exercise: Exercise can be challenging for those with POTS and hypermobility. Gentle, low-impact activities like swimming, yoga, or cycling can help strengthen muscles and improve circulation without putting excessive strain on the joints. Physical exercise is a great way to improve cardiovascular function and autonomic viability, but proceed cautiously.
Physical and neurological rehabilitation: Working with a functional neurologist or physical rehabilitation specialist knowledgeable about POTS and hypermobility can help develop a safe and effective therapy program tailored to the individual’s needs.
We’ve been fortunate to have worked with these patients in our office at The Neural Connection. As one can imagine, success looks different for every person involved.
Medication Management for POTS and Hypermobility
Beta-blockers: These medications work by reducing heart rate and alleviating some of the cardiovascular symptoms of POTS. Unfortunately, beta-blockers can also have unwanted side effects. It’s always best to utilize these therapies when other lifestyle factors have been implemented but haven’t yielded results.
Fludrocortisone: This drug helps the body retain sodium and water, which can improve blood volume and prevent fainting in POTS patients. Once again, this medication can be beneficial, but patients should alert their doctor of any underlying kidney issues before taking it. It can also cause muscle weakness and headaches, which may further complicate symptoms overall.
Pain management: Over-the-counter pain relievers or prescribed medications may be necessary to manage the joint and muscle pain associated with hypermobility. Be careful to know the risks of long-term medication use of common OTCs and NSAIDs. These medications can have side effects related to their use, just like prescription drugs.
Dietary & Nutrition Changes
Smaller, more frequent meals: Eating smaller meals throughout the day can help manage the blood flow shifts that occur after large meals. These large shifts may exacerbate POTS symptoms. Frequent meals may also help to improve blood sugar levels and maintain adequate electrolyte concentrations in the blood consistently.
Anti-inflammatory foods: A Mediterranean diet rich in anti-inflammatory foods like fruits, veggies, and omega-3 fatty acids can help reduce joint pain and inflammation. We suggest a diet high in fiber, dark leafy greens, and quality protein to provide enough nutrition and nutrients to optimize healing.
Support and Coping Strategies for POTS and Hypermobility
Join support groups: Engaging with others who experience similar challenges can provide much-needed emotional support and practical advice for managing symptoms. Patients struggling with POTS and hypermobility often feel alone, so having a community is essential for adequate support.
Cognitive behavioral therapy (CBT): This form of treatment can help patients work through the emotional and psychological aspects of chronic illness. This is especially true for those suffering from anxiety or depression, which can often accompany POTS and hypermobility.
Having POTS and Hypermobility Isn’t A Jail Sentence
POTS and hypermobility are two interconnected conditions that can significantly impact daily life. While managing these conditions can be challenging, a combination of lifestyle adjustments, medical treatment, and physical rehabilitation can help alleviate symptoms and improve overall quality of life.
Early diagnosis is essential for treatment and improving quality of life. Finding a provider who will create a personalized treatment plan is crucial for effectively managing POTS and hypermobility. By working closely with experienced and empathetic healthcare providers, individuals with POTS and hypermobility can find ways to lead fulfilling, active lives.
At The Neural Connection, we’ve helped many patients with POTS. And while every case is different, we’re fortunate to have been able to help each person in a different way.
Here’s Ashten’s testimonial of her experience working with Dr. Reis at the clinic:
“Dr. Erik Reis has made a huge impact in my daily life. I was diagnosed with Postural Orthostatic Tachycardia Syndrome years ago and within the last year my symptoms became worse and began affecting my daily life.
I went to Dr. Reis and he was patient and understanding and did everything he could do to get to the bottom of my symptoms and to improve my life. It has been a few months since I have seen Dr. Reis and received treatment and my symptoms are still improved. Dr. Reis gave me a second chance at life and I could not recommend him enough!”
If you’re still struggling with POTS symptoms, we would love to speak to you. We’re always a phone call or consultation away!
*Note: The information provided in this article is for educational purposes only and does not constitute a doctor-patient relationship. Patients are advised to consult their medical provider or primary care physician before trying any remedies or therapies at home.
