Things that make your condition better / worse
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AnonymousJanuary 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 sleepThings that make seem to make my condition worse:
– More than 4 drinks in a night.
– Sex
– StressI 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.
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AnonymousJanuary 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
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AnonymousJanuary 21, 2009 at 3:21 pm
things that make me feel better –
sleep
spending time with my husband and son
baths
sunshinethings that make me feel worse-
STRESS
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.
Stacey
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AnonymousJanuary 21, 2009 at 7:34 pm
Hi,
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
STRESS STRESS STRESS!I’ve been alone for too long, what is sex?
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AnonymousJanuary 21, 2009 at 8:37 pm
Hey,
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: -
AnonymousJanuary 22, 2009 at 11:19 am
Things that make me feel good:
movement/light exercise
warmth/heat/humidity
sleep (the kind that allows dreaming)
proper nutrition
thyroid being treated properlyThings 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/fluI 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?
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AnonymousJanuary 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 restthings 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 -
AnonymousJanuary 22, 2009 at 11:24 pm
his is a great thread!
Things that help:
my dog
talking to friends
painting
resting a ton
methotrexate
therapy
sex at least a couple times a year:oThings 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;) -
AnonymousJanuary 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 exerciseThings that make me feel worse:
hassles
stress
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 shouldDeb
London -
AnonymousJanuary 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 TeasThings that make me feel worse:
Alcohol (more than a small glass of wine)
Overdoing (but hope that goes away!)
Stress
Monosodium Glutimate
Too many wheat products
SUGAR! -
AnonymousFebruary 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.:)
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AnonymousFebruary 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
STRESS
Family discord
monetary stress
Weather above 90 degrees
Weather below 55 degrees
Not keeping my medication blood levels constant
Not stopping when I shouldAre you noticing a trend here ?
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