Inactivity is the number one cause of it in my life. Joints and circulation both need movement to work efficiently.

Hope you discover what it is for you.

Hi,
I also have N and some heart condition stuff. I do liquid Q10 daily and I swear I have fewer incidents of palpitations and rapid heart beat. When I run out, if I go a week or two...I start feeling them again. I had switched to pills for convenience when I traveled ( same brand) and found it not as effective. I had been experiencing dizziness upon standing and suffering terrible joint pain before I was referred for a sleep study and found to have severe sleep apnea. So as I just wrote in another post, if it has been a while since a sleep study you may want to talk to your doc about another. Anyone can develop sleep apnea at any time...chronic sleep deprivation lowers your threshold for pain. I had had such severe pain in my hip joint it would wake me at night...it is all but gone...once in a while I have some pain there but never the intensity it had been and only occasional where it had been every night. When I found this site, I learned that many people with narcolepsy report feeling sensitivity to cold temperatures...even if we don't have sleep apnea on top of our narcolepsy, we don't sleep optimally and are therefore somewhat sleep deprived and may experience symptoms related to sleep deprivation. You look young. I have experienced periods of hair loss-but I have plenty...I did during that awful time before diagnosis with OSA and narcolepsy. I was sure I had lupus. But nope...dodged that bullet...hang in there.

It sounds like a possible thyroid issue, they can have them test this with a blood draw. my daughter who has narcolepsy went to a rheumatoid specialist for joint pain but it turned out to be bursitis. As for the hair loss this is a thyroid side effect too but depending on how much you are losing your hair grows in cycles and falls out more every 2-4 years( I am a licensed cosmetologist for years)
I hope you find out what is going on.

I agree with the previous post - it could be a thyroid issue. Those are all symptoms of low thyroid hormone, along with fatigue and EDS, which are hard to pick up on when one has N. It's easy enough to get checked.

BTW, I recently read that PWN generally test lower on their TSH levels than non-PWN. So it's best to not go by that number. Have them test T4 and T3.

I have Elhers-Danlos Syndrome. It causes a lot of issues with connective tissue pain. My mom told me that the specialist told other family members who were diagnosed with Elhers, the specialist said that there was a connection between Elhers and N. I have not been able to verify that I don't have the diagnosis for Elhers. I take a product called Move Free Advanced. When I remember and take it regularly it really helps.