Fibromyalgia a sleep disorder? A recovery story

[TigerLilea]

I am new here and am not aware of the science for and against different approaches, I only know from my own experience that the protocol I followed did work.

I've also gone on a lot of other investigative tangents on my own too, and come up with some surprising findings which I wanted to share. For example - the excessively high levels of copper/ low zinc - both me and a friend (who has CFS) tested positive, and we were like WTF?! I know there are other people on the forum that have reported the same thing. It can affect the nervous system functioning in a significant way, and I wanted to share that.

What I usually like to do when joining a forum that is new to me is spend a couple of weeks lurking and reading as many of the posts as I can to get a feel for the forum/group. That way I have a better idea of what has been discussed already and have some idea of the knowledge of the other forum members. You can also do a search and look for topics that are relevant to you and see what has already been posted.

 

[TigerLilea]

It may be that for those if us with Fibromyagia after serious injuries there is a different path or it could just be me.

My sister-in-law developed FM after a work injury. Before that she didn't have any health problems.

 

[Apple]

Regularly getting 10+ hours a night does help my pain and help me recover from PEM more quickly. I definitely think there's something in the theory of poor quality sleep in people with me/cfs/fibro, however those 10 hour nights are few and far between with me, despite taking drugs and haven't made a dent in my overall recovery.

I'm glad you've found something that seems to be helping you though.

 

[Vanessa_M]

What I usually like to do when joining a forum that is new to me is spend a couple of weeks lurking and reading as many of the posts as I can to get a feel for the forum/group. That way I have a better idea of what has been discussed already and have some idea of the knowledge of the other forum members. You can also do a search and look for topics that are relevant to you and see what has already been posted.

Well, I have been doing that. I joined here because there were a select few threads that were relevant to my interests and experiences and have been following those closely. This forum is quite huge, so I doubt I'll be spending a lot of time reading a lot of the CFS related threads, because it doesn't really apply to me.

I may also try other autoimmune specific discussion forums, as I'd probably have more in common with the people there.

 

[Vanessa_M]

Regularly getting 10+ hours a night does help my pain and help me recover from PEM more quickly. I definitely think there's something in the theory of poor quality sleep in people with me/cfs/fibro, however those 10 hour nights are few and far between with me, despite taking drugs and haven't made a dent in my overall recovery.

I'm glad you've found something that seems to be helping you though.

Thanks for commenting

From what I've read about the medications like amitriptyline, I think it may only a subset of people that really respond or do well from it, so maybe I just lucked out. My specialist really impressed upon me how sleep loss can affect cognitive functioning, mood, energy levels, body temperature regulation etc... it's crazy.

I know I started losing sleep once I'd already been diagnosed with an autoimmune condition - I was just maxed out with stress, trying to go to school and work at the same time and dealing with the stress and anxiety of having a serious health condition and corresponding low energy. Things deteriorated quickly, I was pretty much just pushing through with adrenaline each day and then completely unable to fall asleep each night. Became a vicious cycle, that required a multi-pronged intervention and some serious time off to break.

 

[humanrising]

I believe my fibro was also brought on from insomnia. I had a few car wrecks over the years but recovered pretty well, with flares now and then. My pain was localized until my dad got cancer and I was taking care of him. I pushed myself pretty hard and I never fully allowed myself to go completely out. I am sure this is what happens to mothers with new born's I know that my wide spread pain started due to not getting any restorative sleep. My CSF. severe pain and fibro are a combination of genes, number of health injuries ( a dozen bouts of dysentery in India) and insomnia. I believe if I hadn't pushed myself, without sleep for a year and the stress of travel and loss of my dad, I wouldn't have gone so far down the rabbit hole. Every one is different but sleep loss can cause Fibromyalgia, it doesn't mean its the only thing but it can affect one this way. I know if I slept I would greatly improve. Thank you for sharing your experience and I hope you are still improving. keep us posted.

 

[barbc56]

Sometimes I wonder if the Fibromyalgia triggers the sleep disorders. There's also the possibility that lifelong sleep issues may be an indication that you are more at risk for developing FM maybe genetic?

It's complicated to sort these all these factors.

 

[humanrising]

I have had sleep "issues" most of my life. I slept walk from almost the time I could walk. my parents had to strap my feet to the bed at night. I almost got out the front door when I was 6 years old. had to take my doll for a walk
I had bad night mares when I was young and in my early teens had sleep terrors. I slept "normal" otherwise, liked to sleep in and I slept well and deep and woke up rested. My 20's and 30's I slept great, still had vivid dreams but nothing horrible, could sleep though the night wake up alert, sleep though noise. When I was in college my apartment was next to a rail, train looked like it was going to run right though my bedroom. Now one little hoot from an owl can wake me up!
When my sleep started to go I just pushed myself harder with coffee and sheer will power, if I could have do over I would have made sleep more of a priority.
I know that my circadian rhythm is off as well. I was always a night owl who loved to sleep in. After I returned from my first trip to India my clock was inverted and never went back. Now I want to sleep as my fatigue gets worse around 4ish then I start "barely" but notably waking up around 10 pm My pain is worse at night and I am wiped out but I am rarely really super sleepy.... unless its late afternoon. naps don't make me feel any better and they make the night even worse.
I agree that its complicated. but it is still interesting how many of us have similar challenges, not everyone in everyway but enough to make you realize its not all in ones head.

 

[ChrisD]

Does anyone else who has CFS with Fibromyalgia, find that they can awake early in the morning (Say 6am) without pain, then fall asleep again and wake at 8/9am with stiffness and pain? This happens to me a lot and I wonder if it is a sleep disorder and that I am entering a light sleep with poor respiration/circulation for the final hours?

 

[Cog71]

Yes! Exactly this. In fact any time from about 4am to 6am if I wake up I am likely to feel pretty much pain-free. Then I go back to sleep because I am terrified of not having slept enough and having to get through another day on not enough sleep (all a big cycle in my head) and then when I wake up any time after 7am I'm in head to toe pain. This seems to happen independently of the time I go to bed.

 

[ChrisD]

Yes! Exactly this. In fact any time from about 4am to 6am if I wake up I am likely to feel pretty much pain-free. Then I go back to sleep because I am terrified of not having slept enough and having to get through another day on not enough sleep (all a big cycle in my head) and then when I wake up any time after 7am I'm in head to toe pain. This seems to happen independently of the time I go to bed.

Cutting out all sugar including Fructose has been key to really putting an end to 90% of my Fibro symptoms, there was a thread on here the other day http://forums.phoenixrising.me/inde...-the-remission-of-symptoms.56714/#post-942579
This includes a study that describes how Fructose metabolism in FIbromyalgia can reduce the amount of Tryptophan production which is obviously key to sleep what with being pre-cursory to melatonin.