Muscle cramps, sleeplessness, Chronic pain

    • Anonymous
      June 19, 2007 at 10:23 am

      I have started filing for SSDI and I now stay at home with my 8 month old daughter while my wife works fulltime. It’s been 3 weeks and I truly have a new appreciation for a any stay a home parent (even the healthy ones) Neadless to say I have been dealing with the same losses most of the CIDPers deal with-Dropped Foot in both legs and nerve conduction blocks that keep showing up in new places. I can get around and do some things but it’s always sooo painful and my doctors are always questioning where and how much it hurts. I;ve been in narcs for pain for almost 3 years and I stopped a few days ago because I dont have insurance or prescription benefits. That makes everything so much worse.

      I am looking into an enzyme treatment that concentrates on the gut.
      Does anyone have any experience with thi9s approach?

      Are mornings the hardest part for everyone else?

      Greensboro NC

    • Anonymous
      June 19, 2007 at 3:09 pm

      Glad to see you back, but sorry things are so rough. I hope your SSDI comes through really soon so you can get the treatment you need and deserve. I, personally, could not be a stay home mom — it’s way too hard! My best advice to you is to rest or sleep when the baby rests or sleeps. Also, I have trouble sleeping, too. I take a mild sedative, generic clonazepam, which usually helps and is really cheap (about $5.50/month). I get the 1 mg tabs and either take half or whole pill (makes it even cheaper). Perhaps that’s something you can look into. I know that my symptoms feel worse after a “bad” night. Mornings are only harder for me in that there’s a lot to do before I can get out the door. But generally overdoing it or experiencing loads of stress make things worse for me. I’ve never heard of the enzyme/gut thing, but the supplement lecithin is supposed to promote nerve health (I have no evidence to back that up, though).

      Keep us posted as to how you’re doing. Everyone here cares. 🙂


    • Anonymous
      June 19, 2007 at 6:37 pm

      My daughter was always MUCH worse in the morning before she was dx’d. After she starting receiving IVIG regularly that has stopped. She will sometimes be a little stiff in the morning but nothing like it was before.

      I haven’t heard of enzyme treatments but would LOVE to read about it if you could direct me towards some info.

      I hope you get some relief soon & your SSDI comes through.

    • Anonymous
      June 21, 2007 at 10:19 pm

      I can not function properly before 10am. I can’t explain why/how it is that my biological clock is so consistant but it is. when I do have to be up and moving before then, it’s like I can’t communicate with my body to get it to work right.

    • Anonymous
      June 21, 2007 at 11:24 pm

      I usually get up around 6:30 (to use the bathroom), & then try so hard to get back to sleep until around 10:00. Only then can I feel halfway normal. If I don’t get back to sleep I know I will feel like a dishrag the entire day. If I can get 10 or 11 hours of sleep a night, I am at least functional & able to enjoy life. My daughter had her first child 7 weeks ago & just decided to be a stay at home mom. After 9 years in the corporate world & giving up a very good job, this is going to be quite an adjustment for her.

      I was a teacher until my second child was born & then stayed home until my 3rd child was in pre-school. That was from 1978-1985. They were some of the most difficult years of my life, but as I look back now, also some of the best. I wish I could go back in time, I guess partly because I want so much to be that healthy mother again, but also I really did enjoy my time with them.
      Life can truly seem so short, so savor every minute of your time…

    • Anonymous
      June 22, 2007 at 12:48 am

      Hey Mac.

      My mornings are definetely the hardest part of my day. I usually get up and take my meds and then lay back down for a bit and that seems to help. Are you on Neurontin or Lyrica? If so what is your dosage and when do you take it?


    • Anonymous
      June 22, 2007 at 11:42 pm

      Morning are definitely the worse part of the day. It feels like I have on lead shoes on wooden feet. Balance is a real challenge. After about two hours thing seem to “loosen up” a bit and morning about it a little easier.

      You might want to check: [HTML][/HTML] NeedyMeds is the good source of information about assistance programs that help with the cost of medicine and other healthcare expenses.