flare up?

    • Anonymous
      May 5, 2008 at 1:11 am

      [FONT=Arial Black][SIZE=3]I am feeling selfish in light of Gene’s recent post for even writing. It is unbelieveable how life flows. Forgive me for putting my concerns out when one of us is losing the battle. But today I had the weirdest thing happen. It felt like some kind of relapse. I woke up early to go bird watching and when I woke up I felt achey and groggy. But I thought that this too will pass with some air and effort. For the past week and a half I have been actually feeling the best I have felt in about 2 years so I have been doing more than usual and trying to carefully push myself. Still resting but you know, walking more, not using my AFO’s and trying to do more with friends. So today when I was out on the trails I was having some trouble with walking and my arms and legs were acheing like crazy. By the middle of the walk I had to stop because I felt like every bone, every inch of skin and every joint was filled with water and ready to burst. I hurt so bad and needed to get home ASAP. I actually felt like I do hours after taking the Chemotherapy but I hadn’t taken it today. So I got home, took two tylenol and went to bed. I slept for about 5 hours and though the pain went away the aching and stiffness are still there. I am just wondering if it could be a flare up of some sort or if it is not even CIDP related. Any thoughts? Anyone else ever have anything like this? It is just so weird that it feels like when I take that drug which in a way makes sense if the drug is suppressing my immune system and makes me feel initially sick like a flare up would feel. Thanks for listening. Sorry.

    • Anonymous
      May 5, 2008 at 5:31 am


      It could be allergies, the pollen count around here is so high all my cars are green and yellow. It’s making a difference in how I feel. I don’t typically get allergies anymore but with 100,000 other people’s antibodies floating around in me I guess one of them is allergic to tree pollen. (LOL) At any rate that has been making me more run down lately, feeling water logged and tired. I finally caved in and took a children’s Zyrtec and I feel much better now.


    • May 5, 2008 at 12:35 pm

      Kevin has been feeling achey too. I know it is not a flare up because he is stronger than ever! I DO KNOW his allergies are acting up because under his eyes, it is all puffy. I give him loratidine, the generic for claritan, and is non drowsy. My older son who NEVER is sick also has been plagued by allergies this year, took him to the doc and we are going to get the scratch test. He is tired, achey, equilibrium off, puking from the equillibrium issue. So I would tend to agree w/julie regarding allergies being a possible explanation. Keep a journal and keep a close watch, any sign of weakness, I would probably go to the neuro.

      STOP feeling bad about posting, Gene would have it no other way, you help people all the time, so why shouldn’t you come here when you need us? If Gene were still posting, I bet he would tell you the same thing! So post away!!!!

      Hope you feel better soon. Kevie starts treatments tommorrow, hopefully things will run relativeley smoothly again!

      Dawn Kevies mom;) 😉

    • Anonymous
      May 5, 2008 at 9:50 pm

      [SIZE=3][FONT=Arial Black]Thanks Julie and Dawn,
      You are probably right. I did have a really bad allergy attack the night before so maybe it was residuals. I feel pretty good today, so… I didn’t take my Methotrexate today because I only had half a dose so I am having a great Monday night. I gotta tell you, this past two weeks has been like an amazing reprieve from feeling like hell for soooo long. I can’t believe it. Either the drugs are finally working or being on a low dose which eliminates the side effects is making a big difference. I am so grateful. Thanks for your feedback. I hope everyone else is doing well.

    • Anonymous
      May 6, 2008 at 4:41 am

      I’m SO happy to hear you are finally starting to feel better Linda! What a long road this has been for you. 🙂

    • Anonymous
      May 6, 2008 at 9:15 am


      I am so glad to hear you are feeling better. It is scary when things happen that put us back on the rollercoaster of the GBS nightmare.

      As to apologizing for posting, none of us should ever have to apologize for needing to post and ask for support. We are all on a journey right now and some of us have had to taken an unchosen path. Our trials are just that…OUR trials, regardless of how others may perceive them. We are all here for a reason, so post away and lets continue to help each other whenever we can.

      Take good care of yourself.

    • Anonymous
      May 8, 2008 at 10:20 pm

      [COLOR=DarkRed][SIZE=3][FONT=Book Antiqua]Thank you so much Julie and Janet. I am so grateful for the support. I pray everyone else is at peace with whatever stage they are in of this journey.
      Be well.