What are the different ways do people with cidp handle the pain

ith me i have major pain in my legs.to the point i have to have the pain meds in me 24 hrs a day.no im not addicted to pain meds.the have me on gabapentin and methadone.if i dont take the pain meds my legs feel like they are on fire and cant walk.just want to know the different ways we treat pain.

thanks everyonegod bless

Hi John, Im on Cymbalta and Gabapentin and Ultram. Ive noticed if I take a warm shower before bed then take my meds I tend to sleep better.I sleep with a small pillow between my knees and sometimes with my feet propped up to take the pressure off of my heels. Just a few things...8-) ~Blessings, Charolette

Hi John,

I am two years into the CIDP. Pain is a big deal to me. I had been using percocet for pain and now I am weaning off them. My pain doctor sent me back to PT to work on my gait and that has helped enormously. She also got me a TENS unit and that has been a big help also.

Alpha Lipoic acid helps me. I use it instead of Gabapentin (which made me paranoid and crazy). The week before IVIg, I take twice the amount of pain meds prescribed. Then, two weeks after, I can’t take any, because I won’t have enough. This is what I hate about my CIDP. I have asked for physical therapy - NO! I cnnot ake NSAIDS due to stomach surgery. If I can’t get medication for my needs, just who DOES need it? Who is it produced for? I just lie on the couch and cry for two weeks a month. What a life. Thanks, WV docs!

I am taking Vicodin and Gabapentin. I try to wait until the early afternoon before taking my first Vicodin, another early evening, and two at bedtime. This does not make me pain free, but it helps. I also have to be careful not to be on my feet for an extended period of time. I did have physical therapy (it really helped with stretching) and now I try to do my exercises at home. I have an appointment with my neurologist in 2 weeks, I imagine the pain med's will be discussed. I guess the medical community believes pain med's should be used for a short term to avoid addiction, but for me the pain is not short term, I wish it was. When my dad was dying from cancer they had him on mild pain med's for over a year. They didn't want him to get addicted to strong pain med's! If I want to take a medication as often as necessary to decrease my pain then I guess I am an addict.

To all. i know it sucks to have to take pain meds.and i know what u all are going through.i was in the hospital three weeks ago with the flu.i keeped throwing up so couldn’t keep my meds down.i was in there for four hours and i hurt so bad i got up and pulled out iv and told them i was leaving.that’s what it took for them to give me something for the pain.it took that extreme for them to finally do something.even know its on my chart that says why i take it.bottom line.none of u guys are addicts.the pain we are in is very real and very strong.99% of the people couldn’t take the pain we go through.stay strong.and believe in your self.and none of u are alone.
Johnny .mac


I dont seem to have as many problems as other folk even tho it seems I have had accelarating CIDP for 7 or 8 years. I had chronic arthritis in both legs before having both knees fully replaced in 2003 and 2007 .My CIDP pain is miniscule compared to the arthritis pain but I confess that I take Osteo Panadol 2 at a time at least night and morning and midday if needed .There is a significant difference if I try and be brave and go without.. My Gp says I can take up to 8 a day if I need to. 4 a day works fine for me and keeps me fully active without crippling pain.I am heading off deepsea fishing for a week in 10 days time.

Good luck .. Remember to thank God daily for all your blessings and all the good things that have happened and are happening in your life and you will find that to be the best comfort of all.

What has finally made me pain-free after having eight years of severe pain and neuropathy in my feet is a supplement by Triveta called Nopalea a natural anti-inflammatory taken from the Sonora cactus. I started by taking 5 ounces twice a day for the first month it was rather expensive but now I take 1 ounce twice a day and a bottle last me for a week. It is now costing about $ 100 a month. I was very skeptical however it took about three and half weeks before the pain went away now I’ve been pain-free since about January of this year so approximately 9 months. I understand people have varying degrees of success with the supplement. So I’m reluctant to share how it’s affected me but others that I know have taken it that I work with and have a similar experience as myself. I hope this can be helpful to you And others that may read this!

Thank you every one for sharing .i hope all the information helps others. Who are new to cidp.i know at the beginning but u will make it through.