muscle weakness | Me, Myself, and Evan's

The Work Clearance

Posted on July 12, 2016

Yesterday when I saw the doctor he finally agreed to let me go back to work (starting today), so long as I agreed not to put any undue stress on myself or lift/carry/move anything. I have to keep the physical activity and exertion to a minimum, at least until I have the results from the echocardiogram back.

I had every intention of going into work this morning, but when I woke up my muscles felt tight, cramped, and weak. I was already nervous about having to climb the subway steps because of my heart palpitations, but climbing 53 stairs with heart palpitations AND muscle soreness? Not a good idea! Hopefully tomorrow morning I feel better and can get back to work! Working from home always seemed so glamorous in theory, but I quickly learned this last month that its not glamorous at all – it’s lonely, it’s boring, and quite frankly, I end up working even longer hours to compensate for the guilt of not physically being in the office.

It turned out to be a good thing that I didn’t go to work today because this afternoon I got a fairly intense bloody nose. Since my platelets were just checked yesterday, there was no need to panic unless I couldn’t get the bleeding to stop. Thankfully, after pinching the bridge of my nose for a few minutes, the blood stopped running down my face and, soon after, stopped completely. If I get another bloody nose of that caliber, though, I’m going to have to call the doctor.

Today was my first day taking 50 mg of Prednisone, instead of 75 mg. I didn’t seem to have any adverse side effects except for trouble concentrating, though tomorrow will probably be a better indication. I don’t want to jinx it, but today was my first day in weeks without a hot flash!

I called the imaging center this afternoon to make an appointment for my echo. It turns out that the imaging center only does ultrasounds in their off-site location, which is in Jersey City Heights, and they are only open Tuesdays and Wednesdays from 9:00 AM-3:30 PM. Tomorrow is already completely booked, so I made an appointment for next Tuesday at 12:30 PM. I have to work from home that day anyways because I am seeing the hematologist at 3:15 PM for a platelet check. Unfortunately, since both appointments are on the same day, I won’t have my results from the ultrasound until after I’ve already met with my doctor. I’m sure if the echo shows anything urgent or alarming he will call me anyways. I just have to remember to call the hematology center later this week to make sure everything is all set with my insurance. I don’t want to get another surprise bill in the mail.

The Prednisone Problems

Posted on July 8, 2016

The Prednisone side effects are getting old – FAST. I just want to take a nice, relaxing, hot shower in peace! That isn’t an option. I didn’t even like showering that much until the steroids ruined shower time for me and now I want it back. I’m sick of short, cold showers. And feeling rushed. And did I mention cold? Using cold water is the only thing that seems to delay the overheating/hot flash/heart palpitations. Ugh.

Today I was getting dressed (putting on my pants, to be more specific) and, without any warning or buildup, my heart rate jumped to 165. It felt like my heart was trying to beat out of my chest and escape. Usually my heart palpitations gradually worsen and it slowly gets harder to breath. This was different, though. I got short of breath very suddenly and it scared me. I had to sit down. Oddly enough, my heart rate and breathing returned to normal almost as quickly as they spiked. It shouldn’t be that terrifying to put on pants. I would hardly call getting dressed a physical activity/exertion, but I guess I’ll add it to the list.

The other strange side effect I’ve been having now that I’ve been on high-dose steroids for six weeks is muscle weakness/tenderness. My husband tried to massage my shoulders earlier and the muscles in my upper back/shoulders were EXTREMELY tender and sensitive. Even though he was barely applying any pressure to the area, it was very painful. This concept is lost on me. There are areas on my lower legs where I have this problem as well. The area is sensitive and, when touched, feels the same way pushing on a painful bruise would feel. The part that concerns me is that there are no bruises there – not on my legs and not on my back. So why is it that these areas feel so bruised and painful? Is this the muscle weakness and destruction sometimes resulting from Prednisone usage? Will this problem reverse itself once I’m off the steroids or is this permanent? One more thing to worry about.

There is good news, though! Since the AIHA was the only one of the two diseases responding to the Prednisone and my hemoglobin went up despite the lower dose, I am fairly confident the doctor will taper my dose again on Monday! The taper will likely have little to no effect on my platelets, so it’s irrelevant in regards to the continued treatment of the ITP. Thank goodness! Get me off these things!

The Symptoms

Posted on June 2, 2016

Leading up to my ER visit, I had a variety of symptoms that all presented themselves at different times and were seemingly unrelated. All of them could be explained away by outside forces – my crazy diet, moving apartments (lifting boxes and furniture), etc. It wasn’t until I was on my way to the emergency room that I realized everything had been a symptom. My body was shutting down and was trying to warn me, but I didn’t even think twice about it. The dates below are when I first noticed a symptom or something out of the ordinary, but it may have been going on much longer and I was too oblivious to notice.

Tuesday, May 17th
My husband and I signed a lease for a new apartment on May 9th and spent the next couple of weeks packing up our old apartment and driving things to our new place. On Tuesday the 17th, I didn’t think twice about the lower back pain I was feeling. It was fairly intense and I had no history of back pain, but it had been a few years since I’d gone through the stress and effort of moving, so I figured I was just a little sore.

Thursday, May 19th
I had a successful weigh in on my crazy protein-heavy diet and headed back to NJ with my husband. My crossbody purse felt heavy on my chest and I was very short of breath. It was late at night, I’d had a long day, and I have asthma, so I didn’t think much of it. I stopped frequently to catch my breath on the walk home. My chest felt tight, deep breathing wasn’t working, and my heart was racing (tachycardia).

Simultaneously, I was experiencing extreme muscle fatigue. I had only walked a couple of blocks, but it felt like I’d been walking for miles. My arms and legs felt weary and heavy like they were dragging me down. Again, I just assumed I was extremely tired from work and moving.

Saturday, May 21st
My friend came over to help us go through some boxes and make our place feel a little homier. After we returned from a walk around our complex, I started having an awful stomachache and a complete loss of appetite. I had to leave the room when my husband cooked dinner because the look and smell of chicken was making me physically ill. My food aversions only intensified over the next week. It was hard to get myself to eat anything at all and my caloric intake barely hovered around 500 calories. I assumed I was simply sick of the lean proteins I had been eating day-in and day-out for the last six weeks. The only thing I could manage to eat was scrambled eggs.

Monday, May 23rd
I still felt pretty crappy so I talked to some friends at work about my symptoms and they all had the same reaction – sounds like morning sickness. My friend and I bought a test from Duane Reade and set a timer… Negative! Thank goodness! Some of my symptoms just seemed to mirror pregnancy, I suppose.

I came home from work and almost immediately went to bed. I laid down for a “quick nap” around 7:00 PM and was awoken by my husband at midnight telling me I needed to eat something for dinner. Eggs again!

Wednesday, May 25th
My head was throbbing. I have had headaches before and I’ve been known to have the occasional migraine, but this was something different. It felt as though both sides of my head were being squeezed together and I could feel my heartbeat in my ears. I drank some water, chalked it up to stress, and let it go away on its own. That night I thought I had a fever, but we couldn’t find the thermometer, so I cranked up the A/C and tried to sleep through it.

Thursday, May 26th
The headache was back in full force, so I took a couple of Aleve and hoped for the best. It wasn’t until later that day that I got a little nervous. My urine had become a dark orange color. The vitamins I was on were known to make urine very bright/neon like a highlighter, but this was something different. I had no idea that dark urine was a sign of anything, so I didn’t worry about it. I figured I had eaten something weird – maybe something with food coloring in it.

Friday, May 27th
The first thing I noticed when I woke up was that my eyes seemed fairly yellow (yellow sclera). Perhaps I just didn’t sleep well. I forced myself out the door and counted down to the long Memorial Day weekend ahead simply relaxing by the lake.

At work my headache raged again. I took two Tylenol and just hoped to make it through the day. Around lunchtime I noticed that I was sweating profusely. This isn’t unusual for me, though. I tell people, “I sweat when I smile”. It has always been an issue for me. It wasn’t until I came back from the bathroom and my coworkers started telling me I looked pale that I got nervous. I headed to Dunkin’ Donuts and grabbed myself a bagel. I didn’t want to cheat on my diet because I had been doing so well, but I knew I needed to eat something – anything. I scarfed down the bagel and took the train back to NJ.

On the ride to the cottage I napped and tried to ignore my stomachache. It didn’t hurt when I was sleeping, so sleeping was my go-to. We made it safely to the lake and my mother-in-law saw how pale I was and immediately suggested a trip to the ER. I was stubborn and exhausted and just wanted to go to bed, so I forced down a protein shake and agreed I would go in the morning if my symptoms hadn’t subsided.

Saturday, May 28th
I called my aunt, a Nurse Practitioner, when I woke up and explained my symptoms to her. She is always very upfront and practical, especially with medical advice, so I knew when she insisted I go to the emergency room, I needed to go. At the time, I still didn’t realize how serious my symptoms were.