Hello newbie here
AnonymousDecember 6, 2011 at 2:37 pm
Hello i was diagnosed with cidp about a yr and a half ago. i have relapsed several times in the past yr. Each time was different. I am on ivig every three weeks, takes about 9 hours. I am also on gabepentin for nerve pain and also om immuran 50 mg a day.Does anyone know if sharp nasty headaches that come and ago are apart of this? I am 41 yrs old.What do people with cidp take for normal pain? I have found that i can not walk very far and i cant stand up for very long. I go to a local hospital that has a pool that i can use, you pay so much a month. It seems to help, but i still cant stand for very long or walk very far. When i was first diagnosed with gbs i couldnt walk, couldnt stand up , couldnt swallow. couldnt do much of anything. I have improved alot since then.Does it get any better?
AnonymousDecember 7, 2011 at 2:05 pm
Sorry that you are here, but glad you found a place that you can share problems and solutions associated with CIDP.
I think the more you read on the forum, the more you will find that many of us react to CIDP slightly differently. For instance, some are affected with muscular dysfunction, others experience little muscle weakness but have severe numbness. Some have a lot of pain, and some have very little. I don’t know why it seems to affect different people differently, but so it is.
Regarding headaches, CIDP is a peripheral neuropathy, meaning that it affects your arms, legs, and mainly the outside of your body. Headaches usually come from sources other than what CIDP does.
BUT, you may be having some kind of reaction to medication that might cause a headache. Or the stress of having a chronic disease, or depression from life situations. When you pile all the outside influences plus having CIDP, it doesn’t surprise me that more of us aren’t afflicted with headaches more often. I wouldn’t say that CIDP causes headaches directly.
Speaking of pain, there are different kinds of pain that need different treatments. Gabapentin is good for nerve pains, and you are on that. It should help with the tinglies, burning, and those kinds of neuropathic pains. If you are experiencing skeletal muscle pains, your DR. can attack that with a variety of meds. The best thing is to describe your symptoms to your Dr and have him/her try to reduce the symptoms.
As far as improvement, many people get some measure of relief. Because CIDP is chronic, you might expect to be dealing with it for some time. I think I read a statistic somewhere that 5% of people who have CIDP go into a permanent remission. The rest of us continue to deal with it in one fashion or another. It sounds like your Dr. is fairly aggressive with your treatment and hopefully you will see some improvement. Don’t expect an overnight cure, remember that it took a while for you to get where you are, and it will take a while to totally recover.
I hope some of this helps. CIDP is a disease that many of us have learned to live with, It does not need to control YOU. You can control what you do when you have IT.
AnonymousDecember 7, 2011 at 2:07 pm
Hi Paulie & welcome.
CIDP is different for each person. I believe that people can & do get better. It just takes time. My daughter has had CIDP for 6 years & we are finally thinking we are seeing the light at the end of the tunnel. We had quite a few years where we weren’t sure what her life was going to be like.
You say you’ve improved & that’s a really good sign. It means the IVIG does work for you.
Do you have a physical therapist?
How much IVIG are you getting at each infusion?
And what has your infusion schedule been like? How often were you getting IVIG when you’ve had your relapses?
AnonymousDecember 7, 2011 at 5:57 pm
I am on 100 grams of ivig every three weeks. I do see a p hysical therapist and its all done in the pool. I hope that emily continues to improve. I couldnt imagine goin through this at her age. I was only gettin ivig during the relapse, it wasnt till after the second to lasty one that they put me on a schedule for ivig. Thank You Emilys Mom and Thank You Dick S Paulie
AnonymousDecember 7, 2011 at 6:25 pm
I did have ferocious daily headaches for months before I was diagnosed. My nurse reminded me that it took a couple of months for them to subside, during which time we adjusted – and re-adjusted – the IVIG dosage/brand/schedule. I had autonomic problems as well, including breathing that could have been a partial cause for the headaches. Now, the only headaches I get is post IVIG infusion, for which I take migraine medicine. On one of the forum posts you will find a patient was (again) experiencing daily headaches, a sign that they were having a CIDP relapse.
Note that most patients indicate a lag time between the start of their IVIG infusion to the time where they see a significant improvement. Hang on -and hang in – one day you will look back and realize how far you have come.
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