- This topic has 9 replies, 3 voices, and was last updated 3 months, 3 weeks ago by kgmelich87. This post has been viewed 134 times
- February 4, 2020 at 3:54 pm #12228kgmelich87@kgmelich87Participant
I’ve had narcolepsy for almost 6 years, but just diagnosed in Sept. 2019 after cataplexy and hallucinations reared their ugly heads and I finally figured it out. Throughout this time, my sleep quality has gotten worse and worse as I suspect my orexin keeps dying off.
About 3 years ago, I started having lower back pain that seemed to come out of nowhere. I have a great chiro now so no back pain anymore. But then a couple years ago I started having a hard time getting my wedding ring on and off because both my joints and my hands were so swollen. At first I only noticed it when I drank alcohol but now it’s all day every day. I have to use water and sometimes also soap to get it both on and off every day. I notice that after I take a nap, it seems to be easier. But in the mornings it’s incredibly difficult, especially if my sleep has been worse. Depending on the time of day and what I’m doing, the swelling goes up and down, but always present.
I told my neurologist this and he dismissed it and said it’s not part of narcolepsy and that I should see my GP to find the cause of this. I had assumed (perhaps wrongly) that it was because I was never getting any deep restorative sleep. Has anyone else experienced joint inflammation and fluid retention, especially in the hands, as a result of poor sleep? For the record, I have no joint pain, just inflammation. Thanks for any insight.February 4, 2020 at 7:32 pm #12230Ferret@ferretModerator
@kgmelich87 Perhaps three things that you may want to think about…
1) just because you have N with C (which is auto-immune) doesn’t mean that other auto-immune problems are not going to affect you.
2) Many foods now have artificial additives, colours and preservatives in them. You may have a sensitivity to something you’re eating… specifically something that you eat at night.
3) Alcohol consumption is the worst thing that a person with N with C can do to themselves. It wrecks sleep anyway but some wines have different kinds of preservatives than others which can exacerbate the problem.
My nose swells when I eat certain food additives or anything salty… I can literally feel it cracking as it expands and swells from the inside… which hampers breathing… which hampers sleep.
It can take a long time to figure out the guilty party but keeping a combo food diary and the effects may help you to narrow it down.February 4, 2020 at 8:54 pm #12233Natdoc@natdocParticipant
Poor sleep and an inflammatory response go hand in hand as both are regulated by our circadian rhythm.In talking about sleep and the immune system, we’re tackling two of the most complicated processes of the human body. For all our scientific inquiry to sleep, there’s a tremendous amount we don’t know. Though it’s clear we need sleep to survive, scientists still don’t know why we sleep. The human immune system is tremendously complex, and scientists are still working to de-code its operations, to understand how it works—and why things go wrong.
One thing we do know? Sleep, immune function, and inflammation share a common regulator. Our sleep is regulated by circadian rhythms, which drive hormones and other physiological changes that cause us to move back and forth along a continuum of sleep and wakefulness throughout the 24-hour day. Those daily sleep-wake cycles we move through without much thought? Our circadian rhythms are working behind the scenes to keep us on schedule. When circadian rhythms are out of sync, so is sleep.
Circadian rhythms also regulate our immune system, and with it, our levels of inflammation. When circadian rhythms are disrupted, so is normal immune function. We’re more prone to unhealthful inflammation, and more at risk for diseases, including metabolic disease, cancer, and heart disease.
I’ll refer to this site
I wish you all the bestFebruary 5, 2020 at 12:12 am #12236Ferret@ferretModerator
Thanks for the link, I’ll read it tomorrow (31 pages). @kgmelich87 has also just started Xyrem and has been on it for two weeks. Given her predisposition to swelling, is there anything else that she should watch out for considering the high salt content of Xyrem?February 5, 2020 at 9:18 am #12241kgmelich87@kgmelich87Participant
I had wondered about another autoimmune that perhaps my narcolepsy symptoms were masking. I have absolutely no insight into what that would be though. My thyroid numbers are within healthy ranges (I got the full panel of thyroid tests to rule this out). So I thought I’d check into it being related to sleep deprivation before I started on the endless journey of tests to find out what this could be. I already feel like a lab rat since I’ve got such a recent diagnosis despite my almost 6 years of symptoms.
I eat a very healthy diet, mostly organic, and I cook most of our meals. I’ve done about every elimination diet possible (that was painful) and can’t pinpoint anything, unfortunately. Before starting Xyrem, I only drank about 2-4 times a month because I’m painfully aware of how it wrecks my sleep. Since the Xyrem, I won’t be drinking much at all given the nature of the drug. I actually first noticed the swelling while on an all-inclusive Mexico vacation so there was obviously more drinking than usual. 🙂February 5, 2020 at 9:27 am #12244kgmelich87@kgmelich87Participant
Thank you for that thorough information! I will definitely be reading this today. So I guess I will see if my inflammation goes down as my sleep quality goes up with the Xyrem. I’ve had zero side effects and I’m on 3.75 2x night, with one more titration to 4.5 so I’m hopeful it will work for getting my sleep/circadian rhythm back on track.
In the meantime, do you know of any ways I can lessen the inflammation? I drink a good deal of water every day, low-impact exercise (walking, some weights, yoga), and have taken curcumin since the inflammation started but it doesn’t seem to touch it. I recently added “waterease” by Designs for Health which is 50mg of B-6 and 700mg of taurine 2x daily but no results.February 5, 2020 at 9:28 am #12247Ferret@ferretModerator
@kgmelich87 LOL. I live in Mexico. Were you drinking Margaritas with salt on the rim by any chance while you were there?February 5, 2020 at 9:43 am #12250kgmelich87@kgmelich87Participant
Mexico is a great place! It’s possible I had one or two margaritas throughout the week, but much more likely to be mojitos. I’m not a fan of the salt on the rim, though, so I wouldn’t have eaten that with the marg. I likely would have had wine in the evenings with dinner. Probably about 4 drinks/day, which is a ton compared to my normal 2-4 drinks/month. Part of that was probably dehydration, too. But the swelling has persisted for about 2 years straight with no let-up. There’s never a day I don’t have trouble getting my ring on/off.February 5, 2020 at 10:52 am #12253Natdoc@natdocParticipant
As you titrate up on xyrem be careful as Ferret says the salt content is extremely high which may contribute to the swelling, especially in extremities.
My favorite therapy for inflammation is white willow bark and Turmeric.
Works wonders regardless of the underlying cause.
Be careful though it is similar to a blood thinner, don’t overdue it
Best of LuckFebruary 5, 2020 at 10:58 am #12255kgmelich87@kgmelich87Participant
Thank you both so much for your help & insight! I will try the white willow bark and a new brand of turmeric/ginger with lots and lots of water each day.
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