I just read an article about someone suffering from POTS talk about her symptoms and was inspired to delve into mine. It’s hard to explain to someone how you feel when he or she won’t truly understand. It’s hard to empathize with someone who is fatigued, in pain, dizzy, twitchy, and foggy when you personally haven’t truly felt it. And it’s even harder to see those symptoms when the illness is invisible. I am studying to be a doctor and my biggest fear is my illness will prevent that. My illness has become a part of who I am in good ways and bad ways. It has torn me down so many times, but it has also built me up and strengthened me. I’ve learned that illnesses come in all different forms, and even one specific illness, like POTS, comes in different forms. Symptoms are like waves; sometimes they are huge and overpowering, and sometimes they are small and lapping.

Lightheaded and dizziness:

        Shake your head back and forth (as if your shaking your head no) fast for a minute. That is a small glimpse at what I experience everyday when I am dizzy. Now, hyperventilate and breathe in and out heavily and quickly; you now have another glimpse at what it is like to be lightheaded. These are two common symptoms that accompany POTS. When I stand up I experience both; my blood pressure drops and my heart rate increases causing a lightheaded and dizzy sensation. You learn to stand up slowly and stabilize yourself before walking. Living with a chronic illness is a constant learning experience. You learn what works for you and how to adapt. At first it is hard, but you slowly get into a routine that lasts for a few months….until a new symptoms comes up.

Blood pooling:

        Have your feet ever turned purple from standing or your hands turned a dark red because you were hanging them down to long? Have you ever taken a shower and your legs break out in red blotches, hives, and turn red? A problem that occurs with POTS is an issue with vasodilation. For some people it can be due to Ehlers-Danlos Syndrome (EDS) when your veins are to elastic or when your nerves don’t send proper signaling to constrict the veins. When veins don’t constrict they are unable to push the blood back up, which causes the blood pooling in limbs as well as the lightheadedness. When I stand to long or take a shower my feet turn a dark red-purplish color and they feel very heavy and swollen. One way I found to prevent this is to constantly move; when standing I’ll sway back and forth and in the shower I constantly move and take little steps around the shower.

Pain:

Have you ever had the flu or a terrible virus where your body just hurts and your joints feel like they are rubbing against each other with no lubrication? Everyday I wake up with my joints on fire; they are stiff and painful. It takes at least an hour to feel a little better and sometimes it lasts the entire day. When I lie down to go to sleep that same pain recurs. Every joint hurts and medication doesn’t help, soothing baths don’t help, stretching doesn’t help, lying down doesn’t help; nothing helps.

Fatigue:

        There is no comparison I can make for this symptom. Tired and fatigue are extremely different feelings. When someone with POTS/chronic fatigue syndrome says they’re tired, and when a normal person says he or she is tired it is not even close to similar feelings. Fatigue is a constant run down feeling where no amount of sleep will help. I can sleep for 8 hours, 9 hours, 10 hours, sometimes even 12 hours and nothing gets rid of that constant run down exhaustion that follows me everyday. I feel like my fatigue is like the little black blob in the depression medication commercials that just follows you around making your life miserable. There is not much that helps fatigue. It is the one symptom you truly have to learn to adapt to. I have learned to study organic chemistry completely exhausted, I’ve learned to exercise with a weight of tiredness overtaking me, and I’ve learned to adapt to constantly feeling exhausted and attempting to go about my everyday life. The one thing that drives people with chronic fatigue nuts is complaining about being tired; you will never know what being exhausted is until you have experienced chronic fatigue.

Twitching/Shivering/Shaking

        Another new symptom I have been experiencing is body convulsion. I have had twitching and uncontrolled movements since I have had my first fainting episode, but this new episode is different. The only comparison I can make is it is like a seizure. My body goes into these uncontrollable convulsions and I cannot control my muscle. In a few weeks I am getting an EEG to check to make sure I am not have seizures and to see if it is actually POTS related.  One helpful tip for this symptom is having someone hug you! POTS is caused by an overactive sympathetic nervous system and hugging or pressure on the body actually helps lower heart rate (hugs great for heart palpitations also!), lower stress, relax the body, and increase the parasympathetic nervous system. So never time you get twitchy or seizure like episodes have someone hug you!

Loneliness:

        One symptom that doesn’t pop up when you “webmd” POTS is loneliness. Even though you may look healthy, POTS is a debilitating neurological disorder. It is hard to go out with friends when you’re dizzy, in pain, and anxious about other symptoms occurring. It is hard to go to school and do well when you are fatigued, fainting, and have problems concentrating. It’s easy to lose friends and put yourself in isolate because no one will truly understand what you are going through. Look for support groups (there are some great ones on Facebook), ask your doctor to put you in contact with other patients with POTS, and hold on to your family and your few true best friends (Kelly <3) that won’t judge you based on your symptoms.

It is hard to understand someone who is going through a chronic illness unless you have one. You won’t know what someone is truly feeling because when you have lived with a chronic illness for over two years you learn to put a smile on and fake how you’re feeling. Keep fighting and advocating for your health; you are worth it and when your symptoms bring you down, remember the times that your symptoms have made you a stronger person!