What is POTS (postural orthostatic tachycardia syndrome) and how is it linked to chronic pain?
Postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation (blood flow). Normally, the heart and the blood vessels work together to keep the whole body supplied with blood and oxygen regardless of the position of the body. POTS disrupts the coordination between blood vessel squeeze and heart rate reaction.
With POTS, your positional changes from lying down to sitting and standing can trigger symptoms of lightheadedness, fainting or rapid heart rate. However each patient may be affected by POTS differently in duration, severity or type of symptoms.
Pain is common for patients with POTS. Some causes of POTS (like small fiber neuropathy) and the inactivity due to the physical restrictions of the condition can make pain worse. POTS is also associated with headaches and neck pain since the blood is not getting to the muscles and brain.
What is chronic pain?
Pain is communicated to your brain by nerve fibers and normally works to protect your body. For example, when an animal bites you, a pain signal is sent to your brain so that you take steps to not only stop the pain, but also avoid it in the future. In chronic pain, the change that occurs in the nervous system that changes how pain is signaled is called “maladaptive,” because the signals of pain no longer serve to protect you. Chronic pain can take many forms including fibromyalgia (widespread pain), migraine, headache, pelvic and abdominal pain.
Chronic pain can last for months or years and negatively affects a person both mentally and physically. As a result, it can interfere with performance of everyday activities.
What are the symptoms of POTS?
The body responds to POTS with surges of adrenaline which can cause your heart to race, create feelings of jitteriness, increase anxiety and trigger muscle tension. Adrenaline is the fight or flight signal in your body so it feels like you are ready to pounce at any moment. This can cause pain due to the constant “high alert” sensation in your muscles. Soreness or tension is common in POTS due to the body releasing too much adrenaline.
Venous pooling, when your blood sinks down to the legs, is common in POTS. Almost two water bottles worth of blood settle in your legs after you stand because of the pull of gravity. The legs swell, feel painful and tingle.
What are the causes of POTS and chronic pain?
- Damage leading to neuropathic pain: Neuropathic pain is nerve-related pain caused by damage or dysfunction of the nervous system. This pain is usually a burning, tingling or stabbing sensation, and can be constant or on-and-off. The damage leading to neuropathic pain can also be a cause of POTS. Damage to the nerve supply can lead to dysfunction of blood vessel muscles. The signal from the nervous system to the blood supply gets lost, which can cause symptoms of POTS. Blood pools in the legs and positional changes of the body then trigger POTS symptoms.
- Central sensitization: In this condition, the nervous system heightens sensory input throughout the body, leading to increased sensitivity. Central sensitization makes your nerves react sooner than they normally would. Nerves that normally signal feelings of touch or pressure may be affected so that they communicate feelings of pain instead. For example, things that do not normally cause pain, like clothing, can give rise to increased signaling. The result is that it is easier for your brain to “feel” pain, even though whatever is triggering pain in your body would not trigger the same pain in someone else.
- Pain due to dysautomia: The autonomic nervous system, which POTS also affects, is responsible for body functions including breathing, blood pressure regulation, digestion and temperature regulation. In dysautonomia (also called autonomic neuropathy or autonomic dysfunction), the autonomic nervous system does not work correctly.
How are POTS and chronic pain managed?
Some people get relief with pain medicine, others do not. The key to managing pain with POTS is to find the right combination of therapies. For some people, this includes medications, physical therapy, health psychology, meditation, personalized exercise programs and biofeedback. Finding the right regimen for you takes time, but it is possible and many patients find the right balance that works for them.
- Routine POTS care with compression stockings, hydration, salt and leg strengthening exercises can help your legs feel better.
- Exercise triggers your body's endorphins which improve your mood and decrease the feeling of pain. Some people with POTS feel like they don’t have enough strength or energy to exercise, which is why it takes time to build up to feeling better. These steps can help:
- Set reasonable and gradual goals. If you haven’t been able to walk, start with chair exercises.
- If you are only walking from the bed to the couch, start by walking that distance more frequently during the day.
- Building up stamina and muscle strength takes time but the reward is feeling better in your own body – decreased pain and decreased POTS symptoms.
- Cognitive behavioral therapy (CBT) has been shown to improve symptoms across the range of chronic pain syndromes and different patients. CBT is a way of training your thought process, similar to the way you can learn the rules to a new game. You can teach yourself new rules about how to think. It focuses on small interventions and does not require extensive amounts of time or practice.
How do you live with POTS and chronic pain?
To feel betrayed by your body, while not necessarily “looking sick” to others, can be isolating and discouraging. The first step is deciding that you have the ability to improve how you feel.
There is a feedback cycle in patients with POTS and chronic pain. By taking charge of your self-agency, you will be able to break the cycle. Chronic pain interferes with your ability to move around, complete daily activities and exercise. This leads to deconditioning, making your POTS and chronic pain symptoms worse.
Breaking the cycle is the key to improving your symptoms. It can seem like a daunting task, but you are not alone. Take advantage of resources like a chronic pain rehabilitation program or an exercise regimen for POTS. Remember that it will be a process and retraining your body and brain takes time.
More suggestions to help you:
- Use your support system and your healthcare team. Everyone will have a different support team, but your healthcare team is a constant. Engage and educate yourself about your disease so you can advocate for what you need from others both inside and outside the clinic. Don’t be afraid to ask for help from those around you.
- If you have family, encourage them to learn more about your disease and teach them ways to help you. For example, ask them to help you with grocery shopping, meal prep and your exercise program. In this support team you are the captain, so don’t hesitate to ask for what you need.
- If you want to eat healthier but cannot get to the grocery store for the right ingredients, try home or carside delivery service, or ask a friend/neighbor to pick up a few things for you when they go out.
- Listen to your body and what you need. Most important, remember that the people on your support team care about your health and want to help.
- Track your progress with a journal or an app so you can see how far you have come. Day to day, it can be hard to see how much progress you have made. Keep a journal celebrating your successes to remind yourself.
- Use positive thinking and reinforcement to make new habits. Before you go to sleep each night think of three accomplishments of the day. This positive mindset will help energize and motivate you to do three more the next day.
- Start small. One accomplishment might be to reduce the time you spend in bed. Keep goals small and realistic so that you can retrain your brain to be rewarded by these positive behaviors. Over time, you can raise the bar and ask more of yourself.
- Remember that every journey is personal and you are the one who decides what is right for your body. If you have a bad day or feel like you aren’t doing enough, remember that feeling bad is temporary. A bad day doesn’t mean you have failed, given up or will never achieve your goals.
- Practice talking to yourself the way you talk to a friend. Be kind and supportive. You have the ability to change the way you feel, and with the help of your healthcare team you can improve how you live.
Key things to remember about POTS and pain:
- Pain is common for patients with POTS and has lots of causes.
- Not everyone with POTS has pain caused by neuropathy – adrenaline surges and blood pooling can contribute to pain with POTS.
- Pain can be managed with individualized combinations of medications, physical therapy, health psychology, meditation, personalized exercise programs, and biofeedback.
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