For me, mine started with a sinus infection. I had the head cold for a few days when I noticed that I was becoming very short of breath, extremely fatigued, and had pretty severe chest pains. After about two weeks, the head cold had gone away, but the new symptoms remained and I started having numbness in my hands and feet, which was when I called the doctor.
The doctor’s office declined to see me until I went to the emergency room, due to my symptoms. At the emergency room, they couldn’t find an underlying cause, but did note that I had a very high heart rate. They supplied an antibiotic and sent me on my way.
When I wasn’t feeling any better two weeks later, I followed up with a general practitioner who ran several lung tests (all normal) and I tried some additional antibiotics and an inhaler. Finally, when all of those treatments failed to work, I saw a cardiologist.
The cardiologist did many tests, but they all came back normal, with the exception of the occasional high heart rate for no known reason. This was around the time that I also started noticing the high heart rate readings on my Fitbit. Doing simple tasks, like making a sandwich, would read a heart rate of 114. It was only when the cardiologist gave me a beta blocker for one of my scans that I finally felt a little bit better. Finding no underlying cause, the cardiologist supplied a low dose beta blocker and decided to follow up in one year.
About six months later, after having more new symptoms and no new changes on the old ones, I finally went to see a neurologist. He also ran several tests and finally we were seeing results. The tilt table test was actually able to catch my increasing heart rate and I was able to be diagnosed.
Thanks to my Fitbit (for giving proof that I wasn’t making it up and for showing me something was wrong with my heart rate), I was able to be diagnosed right at the one year mark.
Now looking back, I think I’ve always had symptoms to some degree. I was always more tired than my peers and as an adult I’ve always had less feeling in my fingers and some lightheadedness. It wasn’t until my flair up that all of my symptoms together told me that something was very wrong (chest pain, shortness of breath, heart palpitations, numbness in hands and feet, lightheadedness, extreme exhaustion, brain fog, hot/cold intolerance).
For anyone experiencing these symptoms, first of all, don’t give up testing until you find out what is causing them. I saw many, many doctors (even many neurologists) until I was finally diagnosed. You know your body and if something is wrong (and no, it’s not just anxiety).
Secondly, until you get medication, there are things that can help. For starters, join a gym with a pool. I started walking in the pool, shoulders deep, for 10 minutes, 3x a week. I worked up to a jog, and eventually was able to move out of the pool to a stationary bike, and now the elliptical. Each time I went to the gym, I also worked my legs on the stationary weight machines to build up the muscles (and then I’d go home and sleep). It took about 8 months, and was a VERY slow process, but it made the biggest difference. The stronger your leg muscles, the better they will pump the blood back to your head and heart. Twice a day, I also like to do some calf raises at home (with feet shoulder width apart, lift up onto the toes, hold for 5-10 seconds, repeat 10 times), and a poor man’s tilt table (while standing, lean with your shoulders against the wall and your feet about one foot out from the wall, hold for 10 minutes). Along with working out, having some kind of fitness watch helps tremendously. My Fitbit keeps me up-to-date on my heart rate at all times and lets me know if it’s time to take a break. I love using it while I’m at the gym to make sure I’m not overdoing it.
I also raised the head of my bed with a brick under each leg. Sleeping on a little tilt makes a big difference (and no, stuffing books under the mattress doesn’t help, it needs to be the actual bed frame).
Lastly, increasing my water intake to 10-12 glasses a day, salting all of my food, and taking a daily fish oil tablet, co q 10, and a multivitamin has helped tremendously. As does taking breaks. If I feel my body getting tired, I rest. I break up chores and complete them over several days. On the days that I feel great, I remind myself not to overdo it.
Once a diagnosis has been made, medication can help. I take metoprolol twice a day and fludrocortisone in the mornings. These medications definitely make a difference and along with the lifestyle changes, MOST days I feel pretty good. I’ll never be what I used to be, but I’ll take the new good days knowing how bad the old days were.