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Living with Polyneuropathy CIDP, GBS, & CMT

Newbie here..saying hi

Hello. I live in Alaska and I have CIDP. I have more bad days lately than good but trying to cope. I’m on Medicare but it doesn’t pay for durable medical goods. Thank God for our senior center which gave me a rolling walker to use!:blush:. How does anyone cope with so much Pain? Can’t get anyone to prescribe opiates and can’t afford my oil. Some days I’m stuck in bed all day​:pensive:. I love to sew and crochet and bake. I have two fur babies that keep me company and my hubby is trying to understand why I can’t do stuff like I used to. Looking for a few friends who “get it”.
Thanks.

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Hey Amber
Welcome to the Ben’s Friends Network
My name’s Merl I’m one of the moderator Support Team on the network. Ohh, we get it all too well unfortunately. Pain is a weird thing, for those who haven’t been there trying to comprehend it all can be near on impossible. To be honest I thought I knew about pain prior to my own situation, but then I got an education in pain. For most people pain comes and goes but for many of us it’s more that it’s a constant, it’s the intensity that fluctuates. For others outside of this reality even grasping the reality of it all can be near on impossible. How do we cope? Good question. Day by day. We all have our own ways, management techniques, exercises (both mental and physical), medications, for some faith, for some music. Really it can all be a case of whatever works for you, there is no exact science. Everybody has ‘good days and bad days’, it’s just for us we have more ‘Bad days and OMG days’

I’m in Australia, so our health systems are a bit different. We are having restrictions on opiates, but not quite to the extremes that the U.S. is (yet), although they are becoming more restrictive as time goes by. Luckily for us, by showing that we have exhausted EVERY avenue for treatment. With monitoring, showing that we are taking meds responsibly, we can still have ‘some’ access where there is a proven need. But I do wonder how long this will continue as often it seems when the U.S. sneezes Australia gets a cold. But then that’s government bureaucracy and we all pay for that.
We presently don’t have legal access to oil, in saying that tho I have just signed up for a legal trial, but it ain’t cheap. I’ve spent around $800 just to get the government approval. So let’s see how it all goes.

You are amongst friends here, we know chronic illness because we live it too.

Merl from the Moderator Support Team

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In order to handle pain, your neurologist needs to script nerve medicine line cymbalta, lyrics or Gabapentin.
You must seek out a pain management specialist to get scripted pain meds and you should do this right away to deal with pain! Get started right away to get pain reduced by taking hydrocodone, or other opoiod pain meds.
You should also be getting treated for cidp too with Immune globulin or steroid but there are treatments to halt or slow progression! God bless and look for my other posts previously written to get more info from my perspective on coping and living with disease. God bless you and heal you from this terrible and long lasting disease.

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Hi Amber,
I too have CIDP. I was in so much pain for about two years. I know what that kind of pain can do to your life. U must go to your Dr. and not leave until u both come up with a plan to combat your pain. If he or she won’t, go to another Dr.
The answer to my pain was just to change my immune suppressant. Imuran was my miracle drug. So please change up your drugs, everyone has there own combination of drugs that will work.
Good Luck and remember u have to be your own advocate!
Kim

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Hi Amber, hang in there!! I’ve been battling CIDP for three years now. It’s quite an adjustment not being able to do what we used to. Sometimes my wife doesn’t understand and gets frustrated, which makes things pretty awkward. This group is an awesome support resource and a great place to vent. I take Tylenol every night for the pain, and if things get unbearable I start taking gabapentin again. We learn to live with more pain than most folks could handle. I’ve learned to enjoy the good days and take it easy on the hard days. You’re not alone! Hit us all up for anything you want to talk about. Talk with you soon! Jack

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Hi again, and yes, taking gabapentin and cymbalta and flexeril and meloxicam. But even referral to pain management was laughable because they will do anything BUT prescribe opiates. U.S. is in panic mode over abuse by pharma and doctors over prescribing. Pain Dr said that there was nothing he could do. We do have one more clinic here so will be asking my pc for a referral there.

You went to a pain management doctor who said he wouldn’t script you pain meds? That’s terrible! Did you talk about your pain level with them?

Bill Scott
713 269 0920

Nope. He wouldn’t even give me an appointment. Just said he didn’t feel he could offer me any help. My Neuro Dr referred me there so I could GET opiate relief and I couldn’t even get foot in door! Laughable right?

Hi Amber. I am the caregiver - my husband is the patient. I am not a doctor, but have become very educated in attempts to help and care for him. Because the cause of the pain is primarily the nervous systems, pain medications that don’t target the nervous system often are not helpful for CIDP. This fact may be why the pain clinic would not even see you. That said, there should be relief in Gabapentin or another drug of that class. Perhaps the dose you have been given is too low. Regardless, your pain level should be addressed and not just referred away by your neurologist. You will be in our thoughts and prayers, and please, find someone, a friend or relative to advocate for you - especially on days when you don’t have it in you to do it yourself.

Don’t give up o pain relief after one negative experience. Make an appointment with another pain management and another until you get someone to help you.

Don’t quit fighting for yourself! Go further! Keep on the task of helping you feel better! Go to another doctor and do not accept no as your final answer.

Bill Scott
(telephone number removed by moderator – send Bill a PM if you’d like to have his number) S

Hi Jack. It’s been a wild ride and I’m trying not to get discouraged. I had a trip to ER this last weekend because I couldn’t breathe. Alaska is on fire and the extra smoke triggered my COPD. Spent last 3 days on cpap and inhalers resting in bed. Good news is it’s now raining Yay! Do you have fatigue issues? Sometimes not able to do much other than walk to bathroom and back to bed? Sleeping a LOT? How do I explain to Mate? Hope you are feeling well.

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Hello Bill,
Thanks for the encouragement. I’m going to ask my Dr for a different referral cuz obviously that other pain guy wanted more to get paid for other than the script my nerve doc wanted him to give.

Hi Amber, sorry to hear about the fires and the way they affect your breathing. That sucks! I do have fatigue issues. I can work outside for 1-2 hours and I’m spent. I try to work out a little bit every other morning to keep my strength up, but even that will catch up to me and I have to take a couple of days off. I take 2 days of ivig every month and that keeps me going. I don’t know how to explain to your mate other than providing them with all the information you can scrape up for them to read. It’s hard for people to take us seriously when we look fine on the outside. It’s very frustrating and has caused much grief in our relationship. My wife tries to understand, and her being a nurse helps, but she still gets frustrated when I can’t match her energy level. You win some, you lose some. I’m just taking it day to day! Don’t give up!! Hang with the group! Hope you’re feeling better! Jack

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