AnonymousJuly 5, 2011 at 2:49 am
Is trouble sleeping part of CIDP?
I am trying to sleep without drugs. Even with them my sleep wasn’t great & had awful reactions – hung over feeling. I remember I did sleep OK maybe 12 years ago. I usually try to follow the sleep rules–no TV/computer (being on now is unusual), whinding down, white noise/fan, not too cold or hot room and relaxing before bed.
Right now my nose is smelling a strong burning odor which I read is part of most sensory nerve problems like MS. It’s so strong I feel like gagging-nauseous. Not good for trying to sleep. When I do lay down I feel like I’m suffocating-weird. Is this part of diaphragm involvement –trouble breathing?
I’m going back to reading my book & try again to get comfy. I want to sleep but my body isn’t cooperating no matter how tired I am. I’m amazed at how little I sleep I can function on but I pay the price.
If you have any words of wisdom please let me know. Here’s to another watching the sun rise morning. :rolleyes:
July 6, 2011 at 3:03 pm
I was taking Melatonin for occasional insomnia before I was diagnosed with CIDP. I was still using it after CIDP but I read on the lable it recommends not taking Melatonin if you have an immune system disorder. So I stopped taking it for sleep for now. I was wondering why it says this or what it does to cause problems with people with immune system disorders. Is CIDP consideres an immune system disorder? I was just wondering thats all. Thanks.
AnonymousJuly 6, 2011 at 9:41 pm
Go find yourself a roomy comfy recliner and a lap robe so you can ‘nap’ in it extensively. You will wear it out! I’ve had mine for over 8 years and it’s almost done-in. Gotta find another one …this isn’t shopping fun when it just hurts to get to a store, then another store etc.
As for sleeping? have you tried anything such as chamomile teas? You can get the better brands at Whole Foods or the like at reasonable prices.
There is always the just warmed glass of milk? That’s helped me at times as well. I’ve found that most sleeping aids knock me for a loop for several days afterwards, so I too am cautious. Soo try keeping to the more ‘natural’ foods and eating patterns to help you sleep rather than other meds?
The smell of burning just might be a result of some of the meds you are on to help the pain? Web up each medication by name and look up ‘full prescribing information’ – not the patients’ one? But the physician one} and read all the detailed side effects. Smell alterations are either straightforward or under their more obscure latin and other medical terms… It’s not uncommon and you aren’t going crazy! Sometimes it could be a mix of two meds and no one knows about their interactions? So use the phone and those 800#’s and call and ask. That’s free, but can be time consuming.
CIDP IS an autoimmune disease/condition? Meaning that your body’s immune system is attacking it’s nerves [for some unknown reason and/or trigger] It’s similar to MS? But…MS affects the nerves where they start out from in the brain and mess up the rest? With CIDP it starts from the extremeties and works it’s way in. It’s no vacation either way for sure.
I would DEFINITELY call your neuro about the diaphragm and breathing issues…best to get it all tested out and find out IF it’s part of the CIDP or maybe simply Apnea? This is something that should be followed up upon, as it could turn awkward when you least expect it. Get the tests done and know where you stand and what you mite have to do to well? Rest Easy?
Either way, there are meds and treatments that can be done to help ease these problems. So don’t procrastinate calling your doc, please!
Good luck and let us know how you are doing after all the testings..
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