The Undeniable Ruth Rotating Header Image

night sweats

Still Don’t Officially Know What’s Wrong with Me – and I Don’t Care Anymore

I love my running shoes.

I love my running shoes.

I am officially over my medical mystery. I don’t even want to think how much time I’ve spent in doctor’s offices and hospitals or how much money I’ve spent on medical tests related to my chest pains, dizziness, fatigue, and night sweats. And we still have no idea what’s wrong with me.

My cardiologists (all three of them) determined I have a hole in my heart but it’s a congenital defect that shouldn’t be causing my symptoms. My primary care doctor drew nine vials of blood and ran every test he could think of – CBC, thyroid, hormones, Epstein-Barr, other random illnesses – and everything came out negative or normal.

I’m annoyed that trying to do the right thing and take care of myself yielded no actionable results. It disrupted my marathon training and left me unprepared so I couldn’t finish the race. I feel like I wasted my time and I am frustrated that I don’t have any answers except what’s not wrong with me. I’m done doing this process of elimination. I’m ready to call it and apply Occam’s Razor. I say I have reoccurring costochondritis, fatigue from the fact that I work myself into the ground on a regular basis and have depression, dizziness from low blood sugar from my eating disorder, and night sweats caused by anxiety. I changed my linens and took the blanket off my bed so I’m cold when I tuck myself into bed at night, but it seems to be decreasing my night sweats so that’s good enough for me.

My Race Shirt for Rock 'n' Roll Arizona Marathon 2015

My Race Shirt for Rock ‘n’ Roll Arizona Marathon 2015

I’m ready to say “fuck it” and get back into cycling and running. When I go on The Undeniable Tour for two weeks, I plan to go running in every city I stay in. I am a much more balanced person when I work out on a regular basis.

Just in case some things really wrong with me and they just haven’t found it yet, I still don’t leave the house without my Road ID strapped to my left wrist. That way, if I collapse or something, my bracelet will contain the information the emergency medical team should know about my medical history.

Will I try to train for another marathon? I’m not sure. I workout more consistently when I have a race on my calendar and a training program to follow, so I’m looking for a race to train for – either a 10K or a half marathon. I’m contemplating doing a half marathon trail run in June. That could be really fun. We’ll see what happens.

Night Sweats Experiment

Since my doctor suggested that my dizziness, fatigue, and night sweats are not due to a cardiovascular problem, I decided to do some research on the other causes of night sweats. I read an article that said that most night sweats are simply caused because the person is too warm at night. I wondered if I fell into this category before reading this article, and I tested it by pulling down the blankets before going to bed at night. I still woke up in the middle of the night with the soaking wet shirt. However, I decided to test this possibility further.

This is how my bed looks when I go to sleep - 2 fresh shirts ready to be switched out for sweaty ones

This is how my bed looks when I go to sleep – 2 fresh shirts ready to be switched out for sweaty ones

I have two sets of sheets. My summer sheets are simple cotton sheets. My winter sheets are also 100% cotton, but they are T-shirt sheets so they are thicker, softer, and warmer. I usually switch the sheets on my bed when the rest of the world changes their clocks to “spring forward” for daylight savings time or “fall back” to standard time. In the winter I usually have two blankets on my bed as well. One is a fuzzy soft blanket and the other is a heavier blanket that is crocheted using acrylic yarn. I like the weight of the heavy blanket on my body and the softness of the fuzzy blanket against my skin.

This is been a particularly warm winter in Phoenix. The high temperature during the day is often 10° above normal – in the mid- to high 70’s or low 80’s. The low at night is only in the 50’s, and my home is really well insulated. It made me wonder if sleeping with T-shirt sheets and two blankets were contributing, if not causing, my night sweats.

So this past weekend I switched out my T-shirt sheets for my summer sheets. I took the fuzzy blanket off my bed completely and I folded the heavy blanket down so that it’s only on the foot of my bed. I read somewhere that you get the best sleep when your head is cold and your feet are warm.

I wore this shirt with the cooler set up. It was still this wet 5 hours after I took it off.

I wore this shirt with the cooler set up. It was still this wet 5 hours after I took it off.

When I put myself to bed the first night in my colder arrangement, I was absolutely exhausted. I thought I would have no problem falling asleep – but I was wrong. Despite being in a condo that was around 70° inside, I felt really cold. I was uncomfortably cold, so much that it made it hard to get comfortable and fall asleep. I told myself this might have to be the payoff could not have night sweats.

I was wrong about that too.

A few hours later I woke up with a soaking wet shirt. I’m pretty convinced that my night sweats are not due to being too warm at night. But at least I have evidence of this to take to my doctor when I see him later this week.

I Still have a Defective Heart – But That’s Not the Problem

So here is the update about my heart.

My doctor called me late on Tuesday afternoon to let me know that the transesophageal echocardiogram (TEE) showed that I have a hole in my heart (PFO) but there is no blood flowing where it shouldn’t be. My doctor said unless I have a stroke, I don’t need to have the hole patched. I seem to be one of those people who have a heart defect, but it is not problematic.

GRRR by Meghan Dougherty from Flickr (Creative Common License)

GRRR by Meghan Dougherty from Flickr (Creative Common License)

The good news is my fatigue, dizziness, chest pain, and night sweats do not appear to be caused by a cardiovascular problem. The bad news is I’m still having the symptoms and we don’t know why.

So it’s back to the drawing board. I made an appointment with my primary care doctor and we can attack this problem from a new angle. I suspect he’ll order blood work to see if my numbers have changed from my last full physical. I may ask him to throw in a hormone test to see if it might be early menopause. I called my other cardiologist to ask if I needed to keep taking the beta blocker. (Remember: I’ve never had high blood pressure.) His office called me to say that he wants to see me for a follow-up. Perhaps he’ll have some suggestions about what else could be causing the problem.

Since my heart defect isn’t causing my symptoms and my symptoms didn’t show up until I was running 15 miles at a time or more, I hope I can start working out again soon. Before I started training for the marathon, I was running 22 miles and biking 19 miles a week. I was doing two 4-mile runs and two 6.5-mile runs each week. I’d like to get back to that.

It’s frustrating to feel like part of my life is on hold. Part of me wants to say “fuck it” and do whatever I want whether that’s running the hills when I’m in San Francisco for the Dad 2.0 Summit, taking a high intensity step aerobics class, or treating myself to a few hours of trampoline tumbling. I don’t like being told that there’s something I can’t do. I definitely plan to have a candid conversation with my doctors about being more active while we figure out what’s wrong with me.

In case you are wondering, no, I haven’t become completely reckless. And yes, I make sure I’m wearing my Road ID before I leave the house, just in case.

Typical Night with Night Sweats

This is my night shirt after a night of night sweats. I took this photo 6 hours after I took this shirt off and it was still drenched!

This is my night shirt after a night of night sweats. I took this photo 6 hours after I took this shirt off and it was still drenched!

Unless you’ve experienced it yourself, you can’t understand what it’s like to have night sweats. I’ve had them almost every night at least since early December. We don’t know what’s causing them or how to stop them. I started seeing another cardiologist last week; I hope he’ll know what to do.

Here’s what a typical night is like for me:

Getting ready for bed: Put on t-shirt and shorts. Lay out two more t-shirts at the foot of my bed along with my sleep sack for the morning.

Sometime between 11:30pm and 1:30am: Wake up cold, clammy, and drenched in sweat – I mean drenched: my shirt, shorts, skin, sheets, and pillow. Take off shirt #1. Put on shirt #2. Flip over pillow. Go back to sleep.

Alarm goes off at 5:15am: Wake up cold and wet again. Turn off alarm. Exchange shirt #2 for shirt #3. Pull on sleep sack and step into slippers. Pad to kitchen to make coffee. (By the way – shirt #1 is still drenched despite air drying for the last four hours.)

And that’s just about what happens every night for me. It’s so gross to have my skin and sheets covered in human salt. I don’t know how people who have medical conditions that cause this every night deal with it. I’m pretty sure there isn’t a way to sweat through the night gracefully.

I saw my new cardiologist last week who did a second ultrasound. He’s not convinced that I has atrial septal defect (ASD). He said it might be a patent foramen ovale (PFO). Either way, I have at least one hole in my heart that I’ve had since birth.

This week we’re going to do a transesophageal echocardiogram to get a clearer picture of what’s going on and then we’ll formulate an action plan from there. The heart is right next to the esophagus so they’re going to knock me out and slide a camera down my throat and look at my heart. They’ll have a lot less to go through compared to an ultrasound that has to decipher what’s going on through muscles, bones, and my lungs. Hopefully this means I’ll have answers soon.

Of course, being a recovering addict, the first thing I asked when my doctor said I needed this procedure was, “Do I get propofol with that?”

Marathon Training Week 12 Recap: WTF is Wrong with Me?

12 by Jalil Arfaoui from Flickr (Creative Commons License)

12 by Jalil Arfaoui from Flickr (Creative Commons License)

My training had a major setback this week. My chest has been killing me since last weekend. At first I thought it was just costochondritis, which I’ve dealt with off and on for years. The pain was bad on Sunday night and it extended into my neck, head, shoulders, ribs, and arms. I started having night sweats over the weekend too. And I mean sweating – I had to change my shirt two hours after I feel asleep because my shirt was soaked from the neck seam to the waist seam.

Monday: Holy shit my chest hurts. It hurts to take a deep breath, laugh, bend over, and sit up straight. I called my doctor as soon as the office opened and got a same-day appointment. They ran an EKG, which was normal (yay). My doctor listened to my chest and referred me to get a chest x-ray and to see a cardiologist. My doctor recommended that I walk instead of run my miles this week. (I suspect he’d prefer I not work out at all.)

Tuesday: My chest and head still hurt but it’s not as bad as yesterday. The idea of walking this week’s miles make me cringe. I run partially because I don’t have the patience to walk. I walked my 4.5 miles this afternoon. My foot hurt a bit and my chest and ribs hurt a bit. I kept myself entertained by listening to multiple episodes of The #AskGaryVee Show.

I got my chest x-ray results: normal. I’m glad the news was good but it’s annoying not knowing what’s wrong with me.

This is my night shirt after a night of night sweats. I took this photo 6 hours after I took this shirt off and it was still drenched!

This is my night shirt after a night of night sweats. I took this photo 6 hours after I took this shirt off and it was still drenched!

Wednesday: My chest and head still hurt but the chest pain is continuing to improve. Walking is boring and I don’t like how much time it takes up. It took 2:10 to walk 8 miles today. I entertained myself by listening to the Dr. Drew Podcast and Evo at 11.

Thursday: I had to get my car serviced and pick up mail from my office. When I realized they were 2.7 miles apart, I opted to do 5.4 miles instead of the 5 miles I was assigned to do. Yay for killing 2 birds with one stone. Boo for the fact it was raining. I wore my raincoat from when I lived in Oregon but that didn’t prevent my jeans from being completely soaked by the end.

Here’s something that’s weird. When I run, my left leg and my right hip hurt. When I walk, my right leg and my left hip hurt.

Friday:  Rest Day.

Saturday:  My plan for the weekend was to skip cross training and walk the 12 miles I was scheduled to run on Sunday. That didn’t happen. I was pretty run down on Saturday and by Saturday afternoon, I was feeling weak and warm. It turned out I was running a fever. I slept from 5pm on Saturday evening until 6am on Sunday morning, waking up twice to change my sweat-soaked shirt.

Sunday:  I may be a masochist, but I’m not an idiot. My temperature was back down to normal by 7am, but I was still weak from the previous day. Plus something in my liver/lower lung area was hurting. I opted for a mellow day and did housework instead of walking for 3 hours.

I’ll see my cardiologist on Monday morning. Hopefully we’ll get some answers and I’ll be back pounding pavement soon. Being sick sucks.

Weekly Totals:
Running:  0 miles
Walking:  17.9 miles
Push-ups:  0 push-ups