Narcolepsy/cataplexy and pain

General
1

do any of you who have narcolepsy with cataplexy also experience chronic neck/back pain?

2

Yes, and also a Chiari of 9 mm noted on MRI

3

I also have a Chiari malformation, but it is not severe enough for surgery yet. I do suffer from neck pain, but I think it is mostly stress. My cataplexy is not usually that bad unless I am laughing really hard (good thing you sit during a movie) or if I am really tired.

4

I am diagnosed with narcolepsy without cataplexy. My neck and shoulders are almost always tense and sore. I think that it is because of the extra work the muscles constantly do just to hold my head up.

5

ladeejane, that is *exactly* what my theory used to be for sore, tense shoulders and neck! :-) when i started having cataplexy, however, i got severe pain in my neck and back; sort of like a 'whiplash' injury from the sudden forward motion of the head, neck and back. This is sort of what I'm 'fishing' for; it has actually been documented that people w/narcolepsy and cataplexy have significantly more frequent and disabling pain than 'normals.' [please see attached file] i am glad to hear that you do not have cataplexy - it's not the end of the world, but it's not a walk in the park! ;-)

http://www.ncbi.nlm.nih.gov/pubmed/21570344


ladeejane said:

I am diagnosed with narcolepsy without cataplexy. My neck and shoulders are almost always tense and sore. I think that it is because of the extra work the muscles constantly do just to hold my head up.

134-Highpainfrequencyinnarcolepsywithcataplexy11.SleepMed.2011PubMedNCBI.pdf (75.6 KB) 135-highpainfrequency.jpg (393 KB)
6

Jensacutie, i am sorry to hear you have pain, first of all. It doesn't sound as though your pain is related to your N with C. Unless, of course, you may be getting a slight 'whiplash' type injury when you have a cataplexy attack that affects the neck?

Jensacutie said:

I also have a Chiari malformation, but it is not severe enough for surgery yet. I do suffer from neck pain, but I think it is mostly stress. My cataplexy is not usually that bad unless I am laughing really hard (good thing you sit during a movie) or if I am really tired.

7

Here are two formats and a link to an article called 'High pain frequency in narcolepsy with cataplexy.' The authors conclude by saying:

"We report, for the first time, evidence that chronic pain is significantly more common and disabling in NC compared to the general population."

The full text of the article specifies that our pain is generally in the neck and back. If you believe this applies to you, please take this abstract to you doctor(s)!!! It is not well known yet; my own neurologist, board certified in sleep medicine, had not seen it before I showed it to him a year after it had been published...

http://www.ncbi.nlm.nih.gov/pubmed/21570344

132-Highpainfrequencyinnarcolepsywithcataplexy11.SleepMed.2011PubMedNCBI.pdf (75.6 KB) 133-highpainfrequency.jpg (393 KB)