Things that make your condition better / worse

    • Anonymous
      January 21, 2009 at 12:47 pm

      Hi guys, first time poster, long time lurker. I was diagnosed with CIDP in April of 2006 and have been on IVIG regimens of differing frequency ever since. Lately, my condition has gotten better, but I haven’t been 100% in about a year and a half. I wanted to know what things seem to make everybody else’s conditions better or worse to see if it is consistent with my experiences. For me:

      Things that seem to improve my condition
      – Limited (less then 45 minutes / day) Cardio excercise
      – basic yoga
      – lots of sleep

      Things that make seem to make my condition worse:
      – More than 4 drinks in a night.
      – Sex
      – Stress

      I did an experiment and went gluten-free for 2 months and that didn’t do anything, and I went vegetarian for a couple of weeks and that didn’t seem to have any effect as well. Any thoughts on diet? Also the sex thing is puzzling to me. I get a lot of cramps afterwards and go a little numb in my feet. No idea why and my Neuro thinks it’s weird too.

      Obviously I want to get better so I figured I would check in with all you guys to see if anyone had similar experiences or had any advice on how to boost my recovery. Thanks, I’ll hang up and listen.

    • Anonymous
      January 21, 2009 at 1:49 pm

      I havent really come across anything that makes my condition better or worse….but I do notice if I really over do it one day than about two days later I am really tired and dont want to do too much…I still have to learn to slow down and take it easy…I got diagnosed with GBS Sept 07 then with CIDP April 08…I dont know if I was at any help but thats my experience so far

    • Anonymous
      January 21, 2009 at 3:21 pm

      things that make me feel better –

      spending time with my husband and son

      things that make me feel worse-

      lack of sleep
      doing too much in one day or over a weekend
      not being able to do all the things I need to do…(worry)

      and sex ? What is that !?:eek:

      thank you for this thread.


    • Anonymous
      January 21, 2009 at 7:34 pm

      Things That Make Me Feel Better
      sleep! When I sleep the numbness shuts off.
      cool crisp air on my skin when I’m outside
      going on a cruise makes me feel alive!

      Things That Make Me Feel Worse
      over-scheduling myself, doing too much in one day.
      not enough sleep. If I can sleep I have more energy

      I’ve been alone for too long, what is sex?

    • Anonymous
      January 21, 2009 at 8:37 pm

      If your close to 100% after only 3 years,count your blessings. I’ve had CIDP since early 2004. IVIG did nothing for me,but make strend more aggessive. I’m guessing I’m about 40-45% of what I was. I’ve still got dead feet & very bad hand tremors. I use AFO’s to walk. I was on different drugs to calm my tremors. Nothing really worked. I did however get all the side effects. A beer or wine seem to be the only things that work,& no side effects. Sex has no bad effect on me:D . I get flairs ups. Stress seems to bring them on. Other times,they appear out of the blue.
      The so called experts say it takes 6-8 years,on average, to run its course. I’m sure I’ll go past the 8 year mark,as slow as I’m recovering:( .
      BTW,steroids is the only thing keeping my disease in check.
      Your a very lucky person. I hope you thank God every night. While your at it, say a little prayer for all of us here.:cool:

    • Anonymous
      January 22, 2009 at 11:19 am

      Things that make me feel good:
      movement/light exercise
      sleep (the kind that allows dreaming)
      proper nutrition
      thyroid being treated properly

      Things that make me get worse:
      cold weather (which makes me wonder why I live in the north)
      2 or more alcoholic drinks
      poor nutrition (which is too common with me)
      cold virus/flu

      I use to get sore muscles/twitches/numbness in extremities after sex, but if I keep up with the things that make me feel good, those issues have gone away. I sometimes still have issues with my hands/arms if I lift heavy objects over my head. My neck and its muscles hurt then too. Dr’s cant explain it as my MRI’s did not show a pinched nerve, albeit there are some spaces that are not normal. I wonder if these irregularities are causing issues, but trying to find someone to listen and do something is next to impossible. Have you had MRI to check your spine?

    • Anonymous
      January 22, 2009 at 8:26 pm

      things that make me feel good”

      time with my kids/friends (keeps my mind occupied)
      70 degree weather
      the ocean breeze and sound of the ocean (why am I in Ohio)
      rest rest rest

      things that make me worse:

      stress stress stress
      trying to do to much (which happens every day)
      taking care of way to many people
      my screwed up sleep patterns

    • Anonymous
      January 22, 2009 at 11:24 pm

      his is a great thread!
      Things that help:
      my dog
      talking to friends
      resting a ton
      sex at least a couple times a year:o

      Things that hurt:
      walking long and far esp. without AFO’s
      too much physical exertion
      low blood sugars
      any kind of sickness
      doing anything repetatively
      my period
      sex more than a couple times a year;)

    • Anonymous
      January 24, 2009 at 4:59 am

      Greetings, all.

      Things that make me feel better:
      cold, miserable weather (my family claim that God had to make at least one person who likes the English winter, and I’m it)
      my dogs (no matter how I feel or what mood the drugs have put me in, the dogs are always happy to see me)
      my husband and son — when they’re in good moods
      rest/sleep (and lots of it)
      a cup of tea or glass of wine (depending on what time of day it is)
      a bit of exercise

      Things that make me feel worse:
      hot weather, hot showers, hot flushes/flashes (joy of menopause)
      a cold, wet nose shoving my hand off the keyboard while I’m trying to type (I keep telling my husband to stop 😀 )
      not being able to do what I think I should be able to do
      doing more than I should


    • Anonymous
      January 30, 2009 at 8:17 pm

      Things that make me feel better:
      NOT sweating things I can’t control (finances!!)
      Sleep and rest
      Fresh Air and the sun on my face
      Eating Healthy foods (anti inflammatory foods)
      Faithfully taking my supplements/vitamins
      Specific Herb Teas

      Things that make me feel worse:
      Alcohol (more than a small glass of wine)
      Overdoing (but hope that goes away!)
      Monosodium Glutimate
      Too many wheat products

    • Anonymous
      February 1, 2009 at 12:47 pm

      things that make me feel worse: not enough sleep, stress,stress,stress….heat and hot weather, humidity…traffic, crowds, nasty ungrateful people,too much caffiene..over doing it at the gym……. things that make me feel better: good sleep, good healthy food, massage,yoga. aromatherapy (chamomile, rosemary, lavender, marjoram)….nice hot soothing decaf tea like chamomile and peppermint…my WONDERFUL sheepdog CHARLIE who is like a living teddy bear to me, good exercise,nice music on my Bose headphones and i-pod, a few shots of tequila and some amstel light with a big old cheeseburger on a friday afternoon and lots of sex with my partner RICK who always seems to be able to see the GOOD in everything. i’m a very lucy guy.:)

    • Anonymous
      February 4, 2009 at 9:57 am

      Things that make me feel better:
      Keeping to my medication regimen
      good sleep
      love (the emotion, not necessarily the sex act, but that is nice.)
      my family, when they are happy
      getting things done
      Mental exercise
      Music (to my taste)

      Things that make me feel worse:
      Doing too much
      Family discord
      monetary stress
      Weather above 90 degrees
      Weather below 55 degrees
      Not keeping my medication blood levels constant
      Not stopping when I should

      Are you noticing a trend here ?