Why do I feel good in the morning?

    • May 11, 2011 at 8:44 am

      I was wondering why most if not all my symptoms disappear at night when I go to sleep. When I wake in the morning I feel normal and symptom free. After walking to work through the skyway my leg aches come back and then through the day I start to feel the tingling in my feet again. It worsens as the day goes by. But then I lay down for bed and the tingling get bad for about 15 to 20 minutes and then it subsides and my feel feel normal again. I am going in today for my second round of IVIG treatment today. They are running it in slower this time since I got a headache on the loading dose. On the loading dose I got 55 grams each day for two consecutive days and they ran it over about 4 hours the first day and 3 hours the second day. Today they are running in 25 grams over 4 hours and then I am skipping a day and going back on Friday for the second 25 grams. This will be my maintenance dose every 4 weeks for a while to see how I do. I over did it last time after my IVIG because I felt so good. Now I know i need to go home and take it easy. Hard to do when you have a 7 year old but I will try.

    • Anonymous
      May 11, 2011 at 8:52 am

      As you know, we all react differently to CIDP. It sounds to me that at this point, being up on your feet and mobile aggravates your symptoms. For some it is the opposite. When I first started having significant CIDP symptoms, I was taking no pain medication. At that point, walking on a treadmill was the only thing that provided any pain relief. Now, walking seems to slighlty aggravate the burning and stinging in my legs and feet. Thank God that you are able to sleep at night with little in the way of pain. For many, the pain is at its worst when they are lying in bed, with no nerve stimulation to block the pain signals going from their legs and feet to their brains and back.

    • May 11, 2011 at 8:58 am

      I am still very early in this disease. Only diagnosed in January 2011 and onset was after flu vaccine in November 2010. So I will probably progress to that point down the way. It is so scary to me because I don’t know where this disease is going to go. I use to think about my future with fond dreams. My husband and I use to talk about some day retiring in Florida and liviing a nice life. Now all I can do is cry and think about the road I am about to embark on. This uncertanity is driving me mad! I just wish I knew more about what is going to happen to me in the future. Then maybe I could accept this and find a way to live in peace. But I always feel like I am on the verge of crying and the fear never subsides day or night.

    • Anonymous
      May 11, 2011 at 10:46 am


      Make sure you keep yourself very well hydrated over the next couple of days.

      It really makes a big difference on how you feel after IVIG

      If you still get headache pre-medicate with Benadryl and Tylenol.

      Good luck,
      Rhonda (from Canada)

    • May 11, 2011 at 10:50 am

      My clinic did do benedryl and tylenol last time before i got the IVIG so I assume they will again. I am on my third huge (16 oz) cup of water already t his morning. I also keep drinking water through the whole 3 hours of IVIG treatment. I still got the headache last time but with a lower dose maybe I will be lucky and not get one this time. I also over did it last time. I did not know I had to take it easy after IVIG and I cleaned my car only a few hours after my second loading dose. Not this time. It will be feet up and relaxing on the couch today.:)

    • Anonymous
      May 11, 2011 at 6:24 pm

      The emotional difficulties you describe are quite common with CIDP. Anxiety and depression are almost universally experienced. Let’s face it, we have an incurable and unpredictable neurological disease. I’ve cried more in the last few years than in the previous forty-five. Thinking about the future can be fearful, but it need not be. You and your husband may very well retire and live out your years in Florida in relatively good health. Advances in treatment are taking place, and there may someday be a cure. When I first got CIDP I planned nothing. My wife and I didn’t go away anywhere for years. Then, I just decided it was time to live again, and we are now starting to travel once more. Live in the present, and keep planning and hoping for the future you want. It may or may not happen, but there were never any guarantees to begin with.

    • May 12, 2011 at 9:05 am

      Thank you for your encouragement. I feel pretty good today. I had IVIG yesterday for my second time. They ran it in a lot slower this time then they did when I got my loading dose a month ago. No headache this time and I do not have the hyper-shaky feeling either. I have another dose to get tomorrow morning…I am keeping my fingers crossed that i do not get any side effects tomorrow either. I am trying very hard to put this disease in its place and not let it take over my whole life. I think I am fine and then when I am alone in my head late at night because I am awake with insomnia or just anxiety…then my mind goes to the dark side. I have been using my faith to get me through this. I was raised a catholic but in the recent years I have been pretty lax on religion. I have started to rely on my trust in god and my faith again and it gives me comfort.

    • Anonymous
      May 12, 2011 at 11:54 am

      If you don’t feel well continue taking the Benadryl and Tylenol until the day after IVIG sometimes I take it for two days.

      Don’t forget to keep drinking, treat yourself to a big glass of lemonade! 🙂

      I am glad you don’t have the headache today!

      Good luck tomorrow!