Poll The ME/CFS and Fibromyalgia Sleep Poll

[Cort]

[fright]

[/fright]Sleep has been called by some the #1 symptom in ME/CFS and FM. It's often the first thing good ME/CFS and FM doctors focus on. Getting good sleep might not be the cure for either disorder (or it may be) but it sure as heck is going to be hard to make much headway without it.

Tell us about your sleep issues in the poll.

 

[Darden Burns]

The curious thing is that I have recovered from virtually all my symptoms of CFS and FMS - fatigue, muscle pain, headaches, gastrointestinal issues (SIBO), and a wired-tired state but I still have very disturbed sleep with multiple awakenings every night. I think that once a person's sleep is substantially disturbed by long term stress it is difficult to get sleep back on track. I do not think it is productive for doctors to focus on the sleep issue because there is no evidence that improving sleep will result in an improvement in CFS or FMS. Of course sleeping better may make these conditions easier to live with emotionally. There are many otherwise healthy individuals that struggle with sleep issues. I get enough sleep, coupled with a short "power" nap in the afternoon to function quite well. This is not to say that I still search for ways to improve my sleep. I do!

 

[Katie]

I am sleeping much better the past month. Either I'm doing too much and wearing myself out-but that sometimes leads to insomnia or something in my brain has changed.
I do autogenics over and over until my body relaxes and boom I'm asleep. I do wake up during the night at least once and unfortunately I'm in so much pain I can barely move. The pain does lessen a fair but after I'm up and moving around. I don't quite understand why the big increase in pain at night.
My body, rather my brain can't figure out what to do half the time. I either have insomnia for nights on end and need medication to sleep or I sleep hours and hours and remain tired throughout the day or I wake up more than once a night and can't get back to sleep. I probably ticked most of the poll answers!

 

[hoosierfibro]

[fright]View attachment 606 [/fright]Sleep has been called by some the #1 symptom in ME/CFS and FM. It's often the first thing good ME/CFS and FM doctors focus on. Getting good sleep might not be the cure for either disorder (or it may be) but it sure as heck is going to be hard to make much headway without it.

Tell us about your sleep issues in the poll.

I have been diagnosed with idiopathic hypersomnia with long sleep time. I sleep 12 hours on average every day. My sleep physician believes I have a variant of narcolepsy that didn't show up on the sleep study because the cymbalta I was taking for fibromyalgia masked the onset of REM. I have noticed lots of folks in the narcolepsy and idiopathic hypersomnia facebook support groups also have fibromyalgia. Thanks!

 

[Jon_Tradicionali]

I have been diagnosed with idiopathic hypersomnia with long sleep time. I sleep 12 hours on average every day. My sleep physician believes I have a variant of narcolepsy that didn't show up on the sleep study because the cymbalta I was taking for fibromyalgia masked the onset of REM. I have noticed lots of folks in the narcolepsy and idiopathic hypersomnia facebook support groups also have fibromyalgia. Thanks!

Yes I was diagnosed the same after an overnight sleep study.

Along with RLS,depersonalisation,depression,CFS and all that good stuff.

Microvascular endothelial dysfunction as a result of herpeviral infection of white blood cells has much scientific backing for unexplained systemic symptoms.

Brains fried though. Don't know anymore

 

[Folk]

My sleep pattern/quality changes every month. But clonazepan is working well for me.

But one thing I always noticed is that if I sleep less hours (3-4) wake up and than sleep again later more 2-3 hours I wake up with less pain.
But I never tried to keep that as a rythm for something like a week, that's just something that happens ocasionally.

 

[pat0814]

I have tried Xyrem and various other sleep medications but experienced too many side effects. Two things that help me fall asleep almost immediately are taking a magnesium tablet and taking a tablespoon of lemon-flavored cod liver oil just before bedtime. These work better for me than any sleep medication has.

 

[Pold]

I selected unrefreshing sleep, but it doesn't convey just how much sleep messes me up. It's not just unrefreshing, I feel injured and weak upon waking up. On most mornings, I have to recover from sleep first.

It seems to depend in part on the level of activity during the previous day. More activity, worse mornings.

 

[tatt]

Selected unrefreshing sleep, insomnia and restless legs but it's a bit more than restless legs as I can wake up lying diagonally across the bed.
I second the use of magnesium as a sleep aid. Also think it's worth monitoring vitamin D levels. http://drgominak.com/vitamin-d-hormone.html
Have to very careful about activity as anything in the evening can have me unable to fall asleep for hours, I've counted that as insomnia but I'm generally OK if I'm not doing anything active.
When I was most ill I slept on and off for several days, only getting out of bed to go a few yards to a toilet.

I suspect sleep issues are actually a big part of the ME problem.

 

[Seeksassy]

I've never heard of magnesium nor cod liver oil for sleep. I'm going to try them. How much magnesium should I take?

 

[Cort]

The curious thing is that I have recovered from virtually all my symptoms of CFS and FMS - fatigue, muscle pain, headaches, gastrointestinal issues (SIBO), and a wired-tired state but I still have very disturbed sleep with multiple awakenings every night. I think that once a person's sleep is substantially disturbed by long term stress it is difficult to get sleep back on track. I do not think it is productive for doctors to focus on the sleep issue because there is no evidence that improving sleep will result in an improvement in CFS or FMS. Of course sleeping better may make these conditions easier to live with emotionally. There are many otherwise healthy individuals that struggle with sleep issues. I get enough sleep, coupled with a short "power" nap in the afternoon to function quite well. This is not to say that I still search for ways to improve my sleep. I do!

I imagine it's important to help people with bad sleep problems but maybe not so with others - so long as they can get proper rest at some point (?). I've heard of people with the obverse: their ME/CFS/FM persists but their sleep problems seem to be gone...

 

[Cort]

I've never heard of magnesium nor cod liver oil for sleep. I'm going to try them. How much magnesium should I take?

I would like to know that too....
I actually find that dairy in the form of commercially bought kefir reduces my morning stiffness and pain....I wonder why that is...

 

[HMBCheryl]

I believe that chronic insomnia greatly contributed to the failing of my health. I have tried so many interventions and lifestyle changes, with little to no effect. Medications offer little help. Biofeedback and hypnotherapy, Zero results. Clean Paleo diet, stabilizing blood sugar, eliminating caffeine, nada. Finally with CFS, virtually eliminating all stress by not working, not socializing, not leaving the house much ( to avoid chemical triggers). Meditating daily. Still not sleeping more than three hours without long periods of wakefulness. I recently was diagnosed with Upper Airway Resistance Syndrome after two sleep studies. I've been on a CPAP for 2 months, and still no results. Sleep specialist/ Neurologist now wants me to go to bed at midnight and set alarm for 6 and get up and go outside for 1/2 hour, and stay awake until midnight daily until I am able to sleep through. This is supposed to reset my sleep drive. Then after two weeks I can add 15 minutes, and repeat. Although I can see how this would theoretically work, i don't think it will be doable with CFS? Because time awake in bed is still more restful than being up. However, I will test this out for myself. I truly believe that the problem is In the brain, some form of Dyautonomia, or Limbic dysregulation, or Sympathetic Nervous System dysfunction. Which could be good news if I could figure out how to use the brain's plasticity and rewire the neuropathways to change the brainwaves. If anyone knows how, please share!

 

[Cort]

I believe that chronic insomnia greatly contributed to the failing of my health. I have tried so many interventions and lifestyle changes, with little to no effect. Medications offer little help. Biofeedback and hypnotherapy, Zero results. Clean Paleo diet, stabilizing blood sugar, eliminating caffeine, nada. Finally with CFS, virtually eliminating all stress by not working, not socializing, not leaving the house much ( to avoid chemical triggers). Meditating daily. Still not sleeping more than three hours without long periods of wakefulness. I recently was diagnosed with Upper Airway Resistance Syndrome after two sleep studies. I've been on a CPAP for 2 months, and still no results. Sleep specialist/ Neurologist now wants me to go to bed at midnight and set alarm for 6 and get up and go outside for 1/2 hour, and stay awake until midnight daily until I am able to sleep through. This is supposed to reset my sleep drive. Then after two weeks I can add 15 minutes, and repeat. Although I can see how this would theoretically work, i don't think it will be doable with CFS? Because time awake in bed is still more restful than being up. However, I will test this out for myself. I truly believe that the problem is In the brain, some form of Dyautonomia, or Limbic dysregulation, or Sympathetic Nervous System dysfunction. Which could be good news if I could figure out how to use the brain's plasticity and rewire the neuropathways to change the brainwaves. If anyone knows how, please share!

Darn HMBCheryl - good luck with that new regimen. I hope it works!

 

[innergardenpath]

I've never heard of magnesium nor cod liver oil for sleep. I'm going to try them. How much magnesium should I take?

I've been taking a Mag glycinate, high absorption for years now in high doses. In 80's when I was diagnosed with EBV my Orthomolecular physician told me I probably was a magnesium leaker, at the cellular level. Serum mag blood tests are useless for those of us with rhese autoimmune disorders. A cellular mag test is expensive and not usually covered by insurances. I go by how I feel.
Back to you...start slow with mag ad it can loosen the bowel and cause diarrhea. Only at first and if you take a lot at once.

My daily total is over 1200 mg in divided doses of 200 mg Mag glycinate at each meal and another 200 at bedtime. Plus I use a Mag chloride that's included in Salt Lake trace mineral salts. There is disagreement as to benefits of these liquid trace mineral supplements. I go by how I feel. Is pain less, sleep improved etc.?

Others say we need other forms as well as glyconate such as Mag carbonate, mag malate, and mag ???, sorry forgot the last type. Brain fog. Mag oxide is not digestible and will upset the bowels. And worse yet, the body can't absorb hardly any of it once ingested. Personally, malic acid, aka malate, and thus Mag malate increase my pain and nighttime restlessness.

If you are on Facebook there is a good Magnesium Advocacy group. A great book on this topic is The Miracle of Magnesium.

Best to you on your healing journey.

 

[Seeksassy]

I've been taking a Mag glycinate, high absorption for years now in high doses. In 80's when I was diagnosed with EBV my Orthomolecular physician told me I probably was a magnesium leaker, at the cellular level. Serum mag blood tests are useless for those of us with rhese autoimmune disorders. A cellular mag test is expensive and not usually covered by insurances. I go by how I feel.
Back to you...start slow with mag ad it can loosen the bowel and cause diarrhea. Only at first and if you take a lot at once.

My daily total is over 1200 mg in divided doses of 200 mg Mag glycinate at each meal and another 200 at bedtime. Plus I use a Mag chloride that's included in Salt Lake trace mineral salts. There is disagreement as to benefits of these liquid trace mineral supplements. I go by how I feel. Is pain less, sleep improved etc.?

Others say we need other forms as well as glyconate such as Mag carbonate, mag malate, and mag ???, sorry forgot the last type. Brain fog. Mag oxide is not digestible and will upset the bowels. And worse yet, the body can't absorb hardly any of it once ingested. Personally, malic acid, aka malate, and thus Mag malate increase my pain and nighttime restlessness.

If you are on Facebook there is a good Magnesium Advocacy group. A great book on this topic is The Miracle of Magnesium.

Best to you on your healing journey.

Thank you!

 

[Justarose123]

I
I don't know but I had to do this sleep home app and get a week to configure the results.
I always thought I slept though the night most nights,but on two nights I work up repeatedly 296 times (and yes I listened and heard myself mumbling about every 10 minutes?) the second time was 87 times wow I thought 5-10 could be possible for my tiredness apron awakening. Also not much deep sleep mostly light, and Rem only recorded on 2 occasions 37 minutes on one can't think of the other. My quality of sleep was less than 37 compared to a 100...I always believed it had to do with sleep. After my car accident in 2005. I had whiplash which started my sleep issues, then fibro, then caught Mrsa from hospital and full stress was uncontrollable.falling asleep at work during the day numerous times Security would call to wake me up. I do believe we are predispositioned to these illnesses but if we could of avoided the big stresses near peri menopause I was 43 we would be okay. Now my hiuman growth hormone is nonexsistant, my testosterone free and regular lowest my dr. Has ever seen. Came up negative foe ebv but with pretty high tillers IGG...

 

[andreamarie]

I was slow onset in that I did not get CFS following a virus or other illness. However, I already had IC and Sjogren's and would have periods of acute fatigue that lasted up to three months. I would be homebound; my late mother would come in to care for me.

But sleep was the first thing to go. I would wake up every night at 3:10a.m. I'd take a clonazepam and fall back to sleep. But soon it didn't work and soon I had CFS.
At one time I was seeing two sleep specialists (they knew) and taking enough meds to put a whole city to sleep. Nothing worked for long.
Recently I was put on Lyrica and Marinol for neuropathic itching. They knock me out and I wake up feeling better than I did with other meds. Lyrica's sleep effect was wearing off (I have a short shelf life for hypnotics, even morphine) but Marinol is not supposed to. The strange thing is my sleep doc (I'm down to one) couldn't get drobanimal (Marinol) past insurance except for his HIV and cancer patients. My derm had no problem. They're at the same hospital.
Itching destroys anyone's sleep; it's known as "the torture that comes at night." If I dose higher at bedtime it works.
When I was doing exercise on a recumbent bike for preload failure I slept better. I wasn't on Marinol yet.
I had to stop exercise this fall because I am flaring. I typically flare in the fall and spring. Fall is worse. I don't know why; my CFS doc asked me if this was psychiatric. Had I lost someone close in the fall? I told her I'm seventy one and have lost too many people to remember. She accepted that but not a fall flare. Sorry if I threw that in but wonder about this all the time.

 

[andreamarie]

I take magnesium at bedtime. I don't think it's helpful. I took it before the Marinol.

 

[Merida]

I was slow onset in that I did not get CFS following a virus or other illness. However, I already had IC and Sjogren's and would have periods of acute fatigue that lasted up to three months. I would be homebound; my late mother would come in to care for me.

But sleep was the first thing to go. I would wake up every night at 3:10a.m. I'd take a clonazepam and fall back to sleep. But soon it didn't work and soon I had CFS.
At one time I was seeing two sleep specialists (they knew) and taking enough meds to put a whole city to sleep. Nothing worked for long.
Recently I was put on Lyrica and Marinol for neuropathic itching. They knock me out and I wake up feeling better than I did with other meds. Lyrica's sleep effect was wearing off (I have a short shelf life for hypnotics, even morphine) but Marinol is not supposed to. The strange thing is my sleep doc (I'm down to one) couldn't get drobanimal (Marinol) past insurance except for his HIV and cancer patients. My derm had no problem. They're at the same hospital.
Itching destroys anyone's sleep; it's known as "the torture that comes at night." If I dose higher at bedtime it works.
When I was doing exercise on a recumbent bike for preload failure I slept better. I wasn't on Marinol yet.
I had to stop exercise this fall because I am flaring. I typically flare in the fall and spring. Fall is worse. I don't know why; my CFS doc asked me if this was psychiatric. Had I lost someone close in the fall? I told her I'm seventy one and have lost too many people to remember. She accepted that but not a fall flare. Sorry if I threw that in but wonder about this all the time.

Andreamarie,
The seasonal flares are interesting and I believe are viral related. I had a life- altering virus in Oct. 1988 - characterized with excessive throat-clearing, hives, asthma, and the usual viral fever, tiredness etc. I was sick for many months. Then, finally got 100 per cent well following medrol dose pack. However, this same pattern reoccurred every Oct for 5 or 6 years - with less intense symptoms. My severe CFS/ME/ FMS developed in 1998 following a neck/ pelvis injury. I suspect that the 1988 virus has reactivated and plays some role in symptoms.

Your history sounds viral? My son had documented EBV in 1986/ age 5 and developed severe bladder frequency/irritability - neurological problem. Sleep, nighttime hunger, pain, many symptoms.