CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Question for the group. I was diagnosed with CIDP around 6 months ago although it has taken like three years to get to a diagnosis. Lately, I've been experiencing flu like symptoms (chills and some aches) once a week or once every two weeks. It only lasts a day/overnight.

Anyone else experience this? I am wondering if it's the CIDP messing with my body's temperature regulation system somehow. I can't find anything related to it online.

Thanks, and good luck to all. Ken

Welcome @kjwalkercidp, I'm hoping @sherlock and other members with CIDP can answer your question. I'm pretty sure you are not alone. I did find some others talking about frequent chills in a reference that seems to be what you mentioned.

"Since the beginning of my CIDP symptoms, I have gotten chills every now and then.[/QUOTE]. I have CIDP and cold temperatures are a problem for me. I ..."
--- GBS/CIDP Foundation International: https://forum.gbs-cidp.org/forums/topic/chills-anyone/

Have you discussed the symptoms with your doctor or neurologist?

Is all alcohol consumption a factor in CIDP.

Welcome @jrichardfla, I think there is a lot of evidence that alcoholism can be one of the causes for neuropathy and nerve damage. I have idiopathic small fiber PN but I don't think it is related to my younger years of consuming alcohol frequently. I have stopped drinking all alcohol after being diagnosed though and I don't think an occasional drink affects my neuropathy. I just decided to stop drinking because there is an unknown possibility that it may or may not make my condition worse.

Have you discussed the question with your doctor or neurologist?

Although I don’t suffer from chills, I do have issues with temp control.
I am extremely sensitive to heat, and need my air conditioning on when my house is hotter than 76 degrees.
When visiting my daughter up North, the cold temps bother me
immensely.
This has been since my CIDP symptoms have gotten worse.
What makes it worse is that my husband is always cold, and hates the fan on and the air conditioning on.
It makes for alot of arguments!

I don’t know what causes CIDP, don’t know what part years of drinking caused me, but for many reasons this one included l stopped drinking about 4 years ago also. Can’t hurt and l feel better. If they know in the lab what is causing all these 23 million cases of Autoimmune disease they aren’t telling the world.

Thanks @johnbishop so yea seems I'm not alone. I'll be seeing my neurologist again next week on treatment so gonna bring it up. Thanks for sharing the forum link. Sounds pretty much like my experiences.

Happy to have found this forum too. Seems there aren't many community group sites for us CIDP warriors.

Ken

While most doctors are not a fan of alcohol consumption there is an inconsistent response when I asked about alcohol consumption even in very small amounts. I enjoy a drink on occasion and I’m talking about 6 ounces of wine or an ounce and a half of distilled spirits and I’m starting to think that that is fine as long as I don’t do anything to excess. But I’m looking for a conversation

I’m 76 years old. If I stop now and I still going to be living long enough to see a difference with recovery of any magnitude.

If you come to quality of life issue it’s not gonna help me in the next 20 years for her to drink moderately with Dinner because I enjoyed it very much.

That’s the question I can’t get answers to. I think it’s kind of apparent that it’s not going to cure overnight just because I stop drinking so I may have some in moderation.

Y’all’s feedback is important to me let me Let me know what you think. Ty

It's just my 2 cents, but my thoughts are similar to yours and I don't think there are any clear answers that will make a difference one way or the other. I'm a great believer in moderation, especially if you enjoy it and it has no immediate impact on your health or symptoms.