My FND Journey Part II: OMG Improvement!

Approximately one week after I came off the Strattera I felt a click/flip switch in my brain. It seems so weird to think of that happening but I literally felt something click in my brain. After that my recovery drastically improved. I came off the Strattera at the beginning of May 2011 and by mid-June I was walking without a cane! By September, I was working full time again for the first time in two years! It was amazing! All of my doctors were amazed.

I had no other treatments or any type of physical therapy or occupational therapy during this time. Although looking back, physical therapy would have been beneficial since I’d lost a lot of muscle mass in two years.

My neurologist’s theory was proving to be true. All of this was caused by a medication interaction, and I was told I should make a full recovery by my neurologist and homeopathic doctor. I couldn’t have been more thrilled! I was going to get my life back!!! 😀

Living Life Again

Things continued to improve. In November, I came off of the Ativan, and right before Christmas, I found out I was pregnant!

The first half of my pregnancy was high risk because we weren’t sure if my pregnancy overlapped when I was taking Ativan. Ativan can cause birth defects so they wanted to be sure the baby was developing properly. I was still able to take the muscle relaxer, Flexeril, during the entire pregnancy.

I continued to improve while pregnant and even after the birth of my son. I really wanted to nurse my son, but I was told I could not take the Flexeril if I wanted to nurse. So, I decided to try not taking it, and to my surprise, my symptoms were fairly mild. I still had symptoms daily but there were times I was symptom free for the entire day until right before bedtime when I was getting tired.

From September 2012 – December 2015, I was able to lead a fairly normal life.

While I did improve drastically, I never fully recovered. The best I ever got was to about 90%-93% of my former self.

I could work full time, do one activity over the weekend, do light house chores and cook on the weekends. I could also run one or two short errands but I could not go grocery shopping. Also, I would not have been able to do all of the above in one weekend. If I did one activity I might also be able to prepare meals and that’s it. I never could shake the fatigue off completely, and that’s the number one reason I had to limit my activities.

During this time my symptoms were:

• Mild fatigue if I kept my activities in check
• Mild dystonia – mostly toe curling on the right foot but it sometimes caused my limp too.  Sometimes my dystonia was only triggered right before bed when I was tired. During this time I could sometimes relax my muscles if the dystonia was triggered.

My triggers were:

• Overexertion/fatigue
• Heat
• Repetitive movements
• Almost all physical activity that required more exertion than walking
• Weather changes
• Visual and sound overstimulation. This was also pretty mild

I still rested a lot after work too, but I had enough energy that I could walk the dog for about 15 minutes when I got home from work three days/week while carrying the baby in a carrier. The other two days we sent our dog to daycare and TJ picked her up on his way home from work.

Oh, Baby!

A year and almost three months after my son was born I got pregnant again.

My second pregnancy was a lot harder on my body than my first for a few reasons:

• The fatigue during the first trimester hit me hard, and the fatigue started triggering my symptoms.
• I had a one-year-old who had just started walking, and he was exploring everything. This meant I couldn’t always rest when I needed to.
• My first baby was a “man-baby” and weighed a whopping 9 lbs 12 oz at birth. Because of his size, the ligaments that helped me hold my pregnancy belly in place had stretched out, and my abs were weaker too from having a baby and not being able to exercise. My second baby was measuring just as large and because my supporting muscles and ligaments weren’t strong this caused horrible hip and back pain. This, in turn, caused a lot of physical stress on my body
• Lastly, in the middle of my pregnancy, I had to deal with some emotional stress when I found out a close loved one had an addiction. It was a true test because I am a helper, but I had to learn to put myself first for the health of my baby. I ended up taking myself out of the situation when the loved one refused to get help.

When my symptoms became more frequent in the first trimester, I thought oh I’m just tired with the pregnancy and that’s why my symptoms are coming on. I did get a prescription for Flexeril but I only took one. I didn’t realize it needed to build up in my system in order to work. I sometimes wonder if my relapse would have been as bad if I had taken the Flexeril throughout my pregnancy, but I can’t dwell on the past and concentrate on what ifs.

Overall I was still feeling pretty well, and I was able to work full time during my entire second pregnancy. I thought I was still in recovery mode and that after the exhaustion of pregnancy was over my body would go back to functioning at 90-93%. I was probably functioning at around 85% during this time.

Unfortunately, a full recovery was only a dream and one that I would hold onto for an unhealthy length of time.

Continue reading my story Part III: The Relapse – Denial and then Acceptance.