Question: Hello:
You have helped to answer some my questions in the past related to my CIDP diagnosis. I am writing to ask about your experience with CIDP and the impact of stress (physical, emotional/mental) & any recommendations you may have on my situation.
My CIDP diagnosis came in February 2015 after 3 month of obvious onset. To recover, I started with a loading dose of IVIG and quickly saw some turnaround of symptoms (from walker to walking again unassisted). Monthly treatments had some of my automatic issues resolved within 4 months, increased my strength by Fall 2015. Subjectively, I was at 80% of prior and my reflexes had returned. My biggest gap was my endurance level. Still, I drove an hour ½ commute to work daily, conducted workshops with a lot of standing, travel intermitted. Only extreme stress (physical or mental) would irritate symptoms. Generally, I could rest the next day and regain strength. My weakest areas from physical exam was my hands where the CIDP symptoms initiated a year prior. At the 4 week mark of my monthly IVIG cycle, I wasn’t seeing any obvious demyelination or symptoms. We were cautiously optimistic that I was remitting and perhaps my endurance issues were a result of residual damage (permanent or not yet healed) from the initial onset. My neurologist and I planned to test a 6 week cycle in 2016, after my surgery which was scheduled for December 2015.
Unfortunately, the internal stress of the surgery is believed to have triggered more aggressive demyelination, seems like a relapse. In December, I had a Da Vinci robotic hysterectomy. My surgery recovery has been amazing in itself and for 2 weeks, I felt generally fine. I was on bedrest mostly. By week 3, I was cleared to do some light walking and had my monthly IVIG treatment for the CIDP. Not long after, I had returned to work and began the long drive in (3 hours in a car). Over that week, I started noticing my legs getting weaker. Starting week 4 (post operation) through current (week 6 post-op), I have stopped driving the long commute and spending my evenings and weekends, outside of office work, on bed rest. I am trying to conserve energy. I am getting to the point where I can’t stand longer than 5 minutes without feeling like my legs will give out. My gait is still ok and I don’t have the issues in my hands yet or autonomic symptoms.
My neurologist has requested that I am on IVIG every 2 weeks just until I regain some strength and get more in a maintenance mode. My concern is that the physical stress from internal healing, is taking so much energy, and will continue to exasperate my symptoms or that my healing process of the surgery will not go well with the CIDP “active”.