Night versus Day

    • Anonymous
      March 11, 2009 at 12:07 pm

      I had an observation which I wondered about, and decided to open it up to discussion on the Forum (hoping that the topic has not already been covered).
      I noticed that usually my feet feel the worst in the mornings when I get up. At first I thought that this was merely a lack of blood circulation. But then it occurred to me that the body heals itself during the night while we are asleep. The proteins that are attacking our peripheral nerves are a product of the immune system which nature seems to crank up at night.
      Could it therefore be possible that most of the damage to nerves occurs at night while we are asleep?
      Could it ironically be possible that sleep/rest, which is so important, is the time when an autoimmune disease is most damaging?

    • March 11, 2009 at 12:25 pm

      Andrew, good observations and post. I can’t answer your questions, but I can confirm your observations. Early on (before treatments) my symptoms were worse in the morning and seemed to get better with activity and throughout the day. On the drive home from work the symptoms would again start intensifying. I would hate to think that sleep is our enemy. 😮

      One thing this discussion forum has taught me is that there are many things those of us with neuropathy experience that are the same, but also how unique and individualized neuropathy is.

      I seem to have noticed (now that I’m receiving regular PE treatments) that my CIDP flares up on a 2-3 week cycle. Evenings and inactivity still are my worse time and I experience morning stiffness (old age?). Activity is still the best thing for me.

      I recommend that you research the net and ask your neurologist if clinical studies support your observations. And ask your questions of your neurologist.

      May God richly bless you as you battle this disease,


    • Anonymous
      March 11, 2009 at 12:44 pm

      the only time i feel worse in the morning is if i have over done my activites for the previous day…but lately i have been expereinceing some muscle stiffness…i have been lucky with respectes to not feel my symptomes too much from stoping the IVIG’s back in october…I hope this helps

    • Anonymous
      March 11, 2009 at 1:05 pm

      I have more symptoms in the morning and get better as the day goes on. For me, my symptoms in the morning is not the same thing as my nerves becoming damaged. When my nerves become damaged I stay in a weakened state for a period of time (ie months, or longer), but the morning symptoms quickly disappates as the hours move forward (hence, for me, it is not the same). My family and friends have more issues in the morning (stiffer, more pain, etc) than later in the day…so I like to think that my symptoms are just part of normal life 🙂

    • March 11, 2009 at 1:51 pm

      Kevin is the same way. He wakes up at 4:45 every morning to stretch out. I think it is heel chord tightness that refers to the ankles???? I am on the fence about the damage issue too. We went to the neuro. yesterday with two main complaints, constant headaches AND ankle pain. I was worried that we were needing more ivig since our taper. But surprisingly, he had new reflexes in his ankles and knee. As well his stregnth is 100% I am so confused.
      DAwn Kevies mom

    • Anonymous
      March 11, 2009 at 2:10 pm

      My symptoms are the same, 24/7, every waking moment probably for the rest of my life. I do know that STRESS STRESS STRESS can make them ten fold and when I am overwhelmed by stress and I can at times, get normal numbness over syndrome numbness. I am aware though that at night when I am able to fall asleep the numbness will shut off. I can wake up thinking “OH, I didn’t feel the numbness”.

    • Anonymous
      March 12, 2009 at 8:46 pm

      As Gary points out, one of the interesting observations about the Forum is how individualized and unique each of our neuropathy experiences can be.
      After reading the posts and thinking about it some more, I am leaning toward the conclusion that much of the “morning syndrome” is caused by the lack of circulation, and indeed I feel much better after walking around for a while and enjoying a cup of coffee.
      Gary, I notice too that when I drive long distances, my numbness seems to flair up. I get to the point where I am not sure if I will be able to feel the pedals properly. And the stocking and glove feeling gets the feet.

      Likely, even if there was increased attack of the nerves during the night, it would not be to the extent that we would notice the change overnight. Otherwise, the onset would be much much faster (almost to the point of being like GBS).

      Thanks for the thoughts on this subject of night versus day.

      Dawn…regarding Kevin’s ankle tightness…I had the same thing. I guess the Rituxan has helped me to experience improvement in my IgM MGUS, but I also went back to running again because of the ankle tightness. At one stage, I had real difficulty coming down the stairs in the morning. I figured that the workouts I was doing on the Elyptic Trainer were helping the legs but not the ankles. One of the nice simple gadgets they have at the Y where I am a member is a wooden wedge that you can stand on to stretch the achilles. It seems to work well. I hope Kevin can regain strength in his ankles.

    • Anonymous
      March 12, 2009 at 10:32 pm

      Andrew, could it be caused by a problem with melantonin amount that ones body produces at night?

    • Anonymous
      March 14, 2009 at 2:52 pm

      [QUOTE=angel2ndclass22699]…could it be caused by a problem with melantonin amount that ones body produces at night?[/QUOTE]

      That is an excellent question. I’m not sure of the answer.
      In fact I had to google melatonin to help my understanding. I read through the Wikipedia information and interestingly it says “…conversely, the increased immune system activity ([I]due to increased melatonin production at night[/I]) may aggravate autoimmune disorders…”
      That’s something I never knew until now.
      Still, I think that reduced circulation must play the major role in morning immobility.

    • Anonymous
      March 18, 2009 at 1:38 am

      When I sleep at night, I move very little. My wife has teased me, saying that she could draw one of those “dead body chalk lines” around me at night and I would never get outside the lines all night. I just don’t move.

      I think I get stiff at night and it takes an hour or so to loosen up. As the day goes on, if I sit still for an hour, I stiffen up again and have to deal with the issues all over again.

      Good luck with your search

      Dick S

    • Anonymous
      March 18, 2009 at 3:31 pm

      LOL!! I’ve heard that many times myself, Dick.:D I have the same stiffness whenever I stop moving. Its annoying. :p Do you all have swelling in your joints or ankles and hands?