CIDP and Alcohol

    • Anonymous
      August 6, 2012 at 5:15 pm

      Hi,
      I am new to the forum. I have CIDP. I have noticed that alcohol use makes my feet burn more. But recently i am noticing that my thighs and knees feel wobbly. does anyone have this/know about this?

      thanks!

    • August 6, 2012 at 8:13 pm

      Not me. I have been treated regularly for 18 years, drink about 1 ounce alcohol most every day and so far no effects to my CIDP.

    • Anonymous
      August 6, 2012 at 8:40 pm

      Bill,

      Can you walk? Does CIDP affect your legs? Right now, it’s just in my feet….thanks

    • Anonymous
      August 6, 2012 at 11:35 pm

      Alcohol consumption always caused me a significant increase in pain in my legs and feet. My neurologist advised me that alcohol is toxic to the peripheral nerves and should be avoided. In fact, alcoholics sometimes develop neuropathy from excessive alcohol consumption.

    • August 7, 2012 at 5:47 pm

      You ask “Can you walk?” I just returned from a 40 minute 2.1 miles walk half of which was up hill and half down. I can hike in the mountains for about 8 miles then I run totally out of gas. I am 83 and have been on IVIG every 4 weeks and if I go without I am quickly nearly unable to walk at all.

      I hope you and all who have CIDP wind up as lucky as I am.

    • GH
      August 9, 2012 at 3:44 am

      Goodney is correct — long-term excessive use of alcohol may be a contributing factor to CIDP. Nevertheless, I drink a little now and then, although much less than previously. Certain drugs should not be combined with alcohol — check the precautions.

      As for CIDP affecting the legs, certainly it can. There is much variation with CIDP, so no one’s experience can be used to predict yours. In my case, every skeletal muscle below the neck was paralyzed for a time. I recovered, but still have wobbly knees due to axonal nerve damage in my legs.

    • Anonymous
      August 18, 2012 at 12:51 pm

      Interesting topic. It seems that everyone responds differently, which is often te case with CIDP.

      For me, alcohol is a very good painkiller. This is a bit tricky of course, as it makes me overconfident which I regret the next morning.

      Besides my IVIG treatment I take gabapentine every day.

      The combination of gaba and alcohol is tricky as well, but the only thing that can happen is to fall asleep on the couch or gardenchair.

      My doctor adviced me to enjoy life as much as possible.

      Today it is over 30 degrees centigrade here, so in a while I am going to enjoy a nice cold beer.

      Greatings from Europe,

      Willem

    • Anonymous
      October 21, 2012 at 7:55 pm

      I first noticed a problem with red wine causing my feet to hurt. Even a small amount. Now any amount of any alcohol will immediately cause more pain.  I have never been much of a drinker so it has been easy to avoid.

    • Anonymous
      October 28, 2012 at 11:12 pm

      I like that ID koyannisqatsi.

      I have found that alcohol does not kill pain for me and usually leaves me even more exhausted the next day  even after just one drink. I am far from being a big drinker, but occasionally …

      I have heard a good neurologist say that marijuana is effective, if you don’t mind the side effects.

    • Anonymous
      November 9, 2012 at 5:38 am

      GH- you mention “wobbly knees” due to axonal damage….I think I’m getting the same thing.  how long into CIDP did you start getting wobbly?  what do you do for it?  wear a brace?

    • GH
      November 9, 2012 at 6:29 am

      Going into CIDP there wasn’t a question of being wobbly, just progressive weakness in the legs. From onset of symptoms, I was unable to walk at all in one month, and paralyzed below the neck in ten weeks. When the legs are so weak that standing is difficult or impossible, the functioning of the knees is just a small part of that. It was after I got my strength back, especially after starting to walj without a cane, that I noticed my knees were not working right, even though I had enough strength to stand easily, and enough balance and coordination to walj without a cane. It’s just a sensation of not having tight control of my knees when I walk, meaning running is impossible.

      I started walking outside without a cane about 21 months after onset of symptoms.

      I have never used a brace. My knees aren’t that bad, it’s just a bit disconcerting — a feeling of unsteadiness. I just have to be careful, that’s all.

    • Anonymous
      November 17, 2012 at 3:02 am

      Leonbibi- I found physical therapy helknees my knees would just give out on me when I bent them but constitution seems like. Have some better control. They’re still weak but much better. Doing small lungs and squats help bout make sure you have something around to stabilize yourself or catch yourself!

    • Anonymous
      January 13, 2013 at 3:27 pm

      I’ve had CIDP since 2006 and have between 2-4 drinks a day. It doesn’t affect me much but as with anything else alcohol related it is probably wise to be careful. I asked my neuro about it and he said it shouldn’t have much effect but seems to me that there could be some linkage so be careful.

    • Anonymous
      January 14, 2013 at 5:54 pm

       

       

    • Anonymous
      January 14, 2013 at 5:59 pm

      Thankis WTF – Koyannisqatsi – Life out of balance for the uninformed.