Next in our CFS Symptoms Series is the unrefreshing sleep symptom PWCs (people with CFS) experience. If you have been diagnosed with Chronic Fatigue Syndrome and if you are able to get 7 – 9 hours of solid sleep a night without medications, then you most likely do not have CFS. I am not saying that CFS people never sleep. We can have periods where we may sleep 12 hours but it is only after our bodies have been depleted from too many nights of poor sleep.
Hormones are our body’s master control system. A gland in the brain called the pineal gland makes melatonin. Melatonin is a hormone that regulates your body’s circadian rhythm – your day/night cycles. According to the University of Maryland Medical Center:
The circadian rhythm is an internal 24-hour time-keeping system that plays a critical role in determining when we fall asleep and when we wake up. Darkness stimulates the production of melatonin while light suppresses its activity.
Many functions in the body are rhythmic. The adrenal gland makes most of its cortisol hormones during the day. If it makes too much at night, you will have trouble sleeping. Evidence has suggested that in PWCs the adrenal glands make too much cortisol at night and not enough during the day. Stress from an infection also causes the hypothalamus to direct the adrenals to make more cortisol.
This is why you will find that CFS patients tend to what I call “come alive” later in the evening. For me I start to feel productive and ready to go around 8:00 p.m. During the day I feel as though I am in a haze most of the time and I cannot think or function properly.
As I explained in yesterday’s article, even though PWCs are completely exhausted, sleep refuses to come and we are in this constant state of exhaustion and sleeplessness. Even though we can be bedridden for days, weeks or months, during that time we get very little quality sleep. It is also believed that PWCs are not getting into stage 3 and stage 4 sleep, which are the deeper stages of sleep. So even when we do sleep, we are not getting refreshing sleep.
The sleep deprivation we experience just further damages our bodies. Sleep deprivation can cause:
– Immune dysfunction that leads to multiple infections
– Decreased metabolism
– Decreased blood flow to the brain
– Thyroid hormones suppression
– Temperature regulation dysfunction
– Allodynia – a condition in which normally comfortable touch causes pain or discomfort
Emotionally the tolls of unrefreshing sleep are damaging. The last time I had a severe CFS flare where I was bedridden for months, I ended up in the emergency room after having a panic attack. This panic attack was caused by the day after day effects of little sleep. Emotionally I was just drained and a blubbering mess. After you have been without quality sleep for a while, your mind really starts to play tricks on you. It is as though I was on the outside looking in on someone else’s life. During these times I am unable to put together a coherent sentence, do a simple math problem, or even remember a phone number I had known for years.
The unrefreshing sleep causes us to be cranky, moody and I’m sure not a lot of fun to be around during those times. Patience levels are low and socializing is the last thing on our minds.
How has unrefreshing sleep affected your life? What have you done to improve your sleep quality?
Tomorrow our CFS Symptoms Series will continue with post-exertional malaise.
Yes – I know only too well existing on interupted sleep (more like unfreshing periodic “naps”) thoughout the years, and it is progressive in nature.
I have not had a full night’s sleep for 10 years. It’s not because I have a faulty bladder or that my kids are of the baby/toddler age. They are now 19 and 22 years old.
It wasn’t and isn’t due to getting too much sleep during the day and not being totally exhausted. I would like nothing more than a full night’s reprieve from the illness, which is “pumping iron” during the night, reading to pounce on me full force before I can get my eyes fully open.
Two evenings ago, while in an awful state of physical and mental being, I woke up at various intervals of 45 minutes, 1 l/1 hours, and so on throughout the night.
It’s not as though I wake up and can do anything productive, and I certainly don’t feel refreshed. It got so bad that I succumbed to a prescription, which in time, the illness fights off also.
As though the ME/CFS/FM says “Throw at us what you want, you’ll be the one taking the punch”. It’s beyond incredulous.
I had 2 babies and lacked sleep for months on end, and although I wasn’t doing the happy dance about it, at least there was a significant reason, along with a restored sleep schedule once my kids were sleeping through the night.
So, yea – each component of this journey makes absolutely no sense. Thank God my family has a frame of reference of me prior to the onset of this ugly illness creepy in and taking me (and them too to a degree – especially my husband) hostage.
I feel at times like a person who has been deliberately sleep deprived for interrogation purposes, in order to break them down. So, I’ve been broken down. I regroup and then – well – you know the cycle.
Thank you again for providing the detail and insight to each aspect that you previously highlighted last week.
It’s a great tool for not only the PWC, but for family members too!
Hi Nancy! If you would like to send me your CFS story, I would love to post it in my “Chronic Illness Story” profile.
Hi Sandy – I would be glad to send you my story at some point. When I can gather the thoughts and words to get it together, I will do so. In the meantime, I am like a bobbing-head doll with each blog entry you post. Unfortunately, you describe my life and being to the exact nature it has evolved in to. Ugh.
Nancy, I suffer with this same problem and it is getting much worse. I, too, have CFS along with SLE and fibromyalgia. The last several months, I have suffered with the allover pain along with the worse, lack of sleep, disturbed sleep which is becoming debilitating. I am wearing down very fast . Even sleep medication does not help. I am awake within 2 hours, whether I’ve taken a sleeping pill or not. I’ve tried to use melatonin, but it gives me such severe nightmares, I had to quit using it. IT just magnified my depression , as the nightmares caused me such stress. It seems to be an endless cycle. I’m not sure what the answer is. My doctors don’t seem to have the answers either. If anyone has any suggestions, I am open to them. I was diagnosed with all of this about 10-13 years ago. I’m 57 and just don’t know how much more I can take. I have no family, children, husband , no one to help me, well enough give me any support of any type. I’m trying to survive thru all of this on my own. Good luck and any suggestions would be appreciated from anyone..
I realize that is has been several months since you posted, but just in case you come back to this site I want to go ahead and reply to your post.
I am so sorry to hear that you have no support system available to you. I don’t know how I could cope without one. I almost didn’t cope in spite of having a support system.
I am praying for you and asking God to send someone to befriend you and to be a support.
I want to encourage you to think of specific ways someone could be of support Try by finishing this sentence, “It would be so helpful if someone could just ___________.
Perhaps you would fill in the blank with: call me once a week, or fix me a meal and come and eat it with me, or do 1 load of laundry, or vaccuum once a month. Write these things down (on one of your good days) so you will have them ready to tell someone if they ask if they can be of any help. Or, if you have a friend, you could just tell them that you would be sooo grateful if they could ___________.
Also, write down exactly how that support would help you, and how much it would mean to you. Then, you will be ready to ask for help in specific ways (even if you are having a bad day and can’t think)and you will be able to express your gratefulness to the one who helps you.
You could also contact a local church or synogoge and see if they have a care ministry of some kind. Perhaps they would have volunteers who would be happy to support you.
About sleep, sometimes klonopin, which I belive is an anti-anxiety drug, given in very low doses helps PWC’s sleep better than sleep medications.
I hope this is helpful. I am praying that you find some good support. I want to encourage you to ask God for help, too.
Diane Williams says
I have both fibromyalgia and chronic fatigue syndrome. I can sleep from say midnight to 7 am, but I get up at least 3 times to use the toilet and sometimes I can’t fall asleep after one of those trips. I wake up stiff and somewhat nauseous with vertigo. I’m hungry but can’t bring myself to eat anything. One thing that has been the biggest help to my lack of energy is taking D-Ribose. It is a supplement that comes in a powder form, and I worked my way up from one to six scoops a day. It helps the body create the ATP that folks with CFS probably can’t create on their own. My own doctor takes it and he was the one who suggested it to me. It’s expensive and you go through a canister a week. But it’s so worth it. Google it and consider getting it from Life Extension, http://www.lef.com