Narcolepsy, Fibromyalgia, and AS
I'm finally, after more than a decade of suffering, actively trying to do something about certain abnormalities in my brain and body. But I'm not sure where to start. I have recently come to suspect that I have mild to moderate narcolepsy, as I have all of the symptoms except obvious cataplexy:
-excessive daytime sleepiness
-frequently falling asleep during the day, usually as the result of stress (this is not as severe as some people get though - I suddenly feel the *need* to sleep but I can almost always fight it off until an opportunity arises where I can sleep without negative consequences, ie I can stay awake for the rest of the work day, though in a fog, and fall asleep on the bus ride home)
-hypnagogic hallucinations (I used to say "I dream even before I fall sleep" until someone gave me this technical term. this can be abstract shapes, sounds, patterns, etc., or even full-on dreams)
-rapid onset of REM sleep that seems to last all night (I can often feel the moment I fall asleep and transition from the hypnagogic hallucination to the actual dream. Even if I sleep just for a few seconds I have detailed dreams which I can always remember in detail. No matter how long I've been sleeping or what time it is, whenever I wake up it is always in the middle of a dream, leading me to believe I dream most of, if not all of, the time I'm sleeping)
-frequent awakening at night (every couple of hours, and again this is always in the middle of a dream)
-sleep paralysis (on average once every month or two)
-frequent lucid dreams (nearly every night)
-general fatigue, even general feeling of muscle weakness, despite many hours of sleep and especially in stressful circumstances
All of this started when I was quite young, younger than 10. The one thing that seems strange to me is that I don't fall asleep quickly at night. I do fall asleep very quickly if I have one of these attacks of sleepiness during the day, but when I lie in bed at night it can take hours for me to fall asleep. This is generally because I'm stressed and overthinking what I need to do the next day, worried about various things, etc., and holding on to consciousness. Sometimes I start to fall asleep and the realization that I'm starting to dream shocks me back into wakefulness. Until recently I supposed I just had insomnia, but over the past year, since learning more about narcolepsy, I've started wondering if this is my explanation after all.
Then just a few days ago I suddenly remembered something: about ten years ago I was diagnosed with fibromyalgia. I mostly disregarded this diagnosis because I didn't like the doctor who gave it to me, and I felt he didn't investigate my pain very well before diagnosing me. I was having constant pain in my knees, back, and shoulders, without any apparent cause. The doctor put pressure on a bunch of points on my body and asked me where it hurt - nearly everywhere did. Combined with my descriptions of other symptoms (sleep disturbance, chronic anxiety, chronic fatigue, apparent cognitive dysfunction, history of depression, etc.), and after a test ruling out arthritis and lyme disease, he said it must be fibromyalgia and the only thing he could do was prescribe low-dose antidepressants which might help me sleep better, which I declined because I hate antidepressants. Before too long I forgot about this diagnosis. I started getting more exercise and fighting my depression harder, and a lot of the pain went away. A few years later I injured my knees playing rugby and attributed any future knee pain to this injury. The pain in my back has never gone away, but I figured it was due to a pinched nerve or something. My neck always hurts as well, but a lot of women get neck pain as the result of stress.
Now, I'm wondering if maybe the doctor might have been right. I do, after all, have all of the symptoms of fibromyalgia. On the other hand, almost all of these symptoms can be explained by other conditions, most of them by AS. (I got this diagnosis maybe 5 years before the AS one, so I didn't have these explanations at the time.)
-chronic anxiety due to social issues I was not aware I had - I never understood what was expected of me or why people were always upset with me - also due to sensory issues which continue to be a problem, and in fact are worse now than ever since I work with young children who tend to be loud and I have to travel by loud, crowded public transportation every day
-chronic fatigue because I just don't sleep properly - though whether this is actually narcolepsy, some kind of insomnia/hypersomnia combination, or fibromyalgia, I have no idea
-cognitive dysfunction - this is worse now than ever but was certainly made worse by a period of psychedelic drug use about a year ago which I foolishly didn't anticipate causing me long-term problems, so I'm not sure if this is just autism, or drug use effects, or developing schizophrenia, or something caused possibly by fibromyalgia or other condition
-history of depression - I've been dealing with depression since I was far too young to have to deal with depression, but there are many possible reasons for this. there is a family history, plus all the problems I dealt with growing up due to my undiagnosed AS
-pain in response to pressure on my body - I am extremely hypersensitive. my ears regularly hurt from loud noises, so it's not a big leap to think I might be sensitive to pressure as well just as a symptom of AS
Is there anyone who has a dual diagnosis of AS and fibromyalgia, or anyone who can explain how a doctor would differentiate between symptoms of one and the other? I'm having increased pain lately, especially in my back and knees and especially if I stand still for any length of time, and I want to do something about it, but I'm not sure what to do.
Is it possible that fibromyalgia might explain my sleep issues, and that I don't have narcolepsy after all?
I have contacted a local sleep center to ask about diagnosis of narcolepsy - how long it takes, what is involved, and most importantly, how much it costs. But I know my insurance doesn't cover any of this kind of testing, and I'm not sure if I'll be able to afford it. But I feel like I need to do *something*. I feel like I've never had a good night's sleep in my life and it's starting to really wear me down. And I'm tired of being in pain all the time, and if there's anything I can do about it, I want to know. So I guess I'm hoping someone on here will have some kind of experience or information that might be helpful.
Thanks to anyone who actually takes the time to read this long post and offer whatever thoughts you can!
Sleep deprivation can cause a whole host of issues, including extreme moods, brain fog, irritability, pain, etc. I have sleep apnea that is currently being managed but I also have fibromyalgia. Since my sleep apnea improved so did my fibromyalgia symptoms, but not entirely. I still have all the secondary symptoms and that "my body is being poisoned from the inside and I have the flu" feeling, just less often and less severely.
For a while I wondered if I had true fibromyalgia or if my symptoms were just from a combination of sleep deprivation, stress/muscle tension, and the mental fatigue associated with sensory overlord/bad brain. So unfortunately I can't answer your question. My doctor doesn't know either...and as you mentioned fibro can cause sleep issues too!
Advice...different for everyone and easier said than done but try:
minimum caffeine
more sleep/naps
maybe a different kind of diet that doesn't stress your system--simple yet healthy cooked foods like you would feed an invalid or a child.
epsom salt baths or a magnesium supplement to relax your muscles and help you sleep at night.
chamomile tea
gentle stretching and exercise to loosen stiff muscles
If you can, take ear buds (not ear plugs but buds) for your commute and to loud places. Pretend to be listening to music or have on ocean sounds or something. It won't drown out the loud entirely but it might help soften it.
Stress is the enemy it will make all of your symptoms ten times worse. Before you go to bed at night write a to do list and a worry list...not too long but long enough so that you won't keep thinking about it once the lights are off.