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Article by Wendy McCance
For about three days now, I have struggled to get some sleep. Each night, I will go to bed exhausted, convinced I will fall right to sleep. Each night, within an hour or two, I’m right back up and out of bed frustrated with my predicament.
The first night I began to have an issue, I had gone to bed at 8pm. I could barely keep my eyes open and knew I just needed to get some sleep. I use my phone’s alarm function to wake me each morning. I went up to bed and once tucked in started to fall asleep immediately. Between 8:15pm and 9:20pm I received three phone calls. Each time that phone rang, it jolted me out of the beginnings of falling asleep. By 9:30pm I was wide awake again and had no luck getting back to sleep.
For the last couple of days I have gone through a bit of a fog. I have managed getting through each days responsibilities, but by the evening I get anxious about how well I might sleep.
When you have fibromyalgia, sleep is like winning the lottery when you hit on a restful night. Not getting enough sleep is a cruel side effect of fibromyalgia because it effects every other symptom you deal with.
Here’s the dilemma, if I don’t fall right to sleep, not only do I seem to lose the ability to fall asleep at all that night, but worse, my body stiffens up and I get muscle cramps and pain from laying so still. It’s bad enough when I wake up midway through the night because my body hurts, but if I can fall right to sleep, sometimes I can bypass being aware of this uncomfortable side effect.
The sleep issue is the most evil part of having fibromyalgia as far as I’m concerned. Without a good nights sleep, symptoms amplify and the pain is much worse. You need restorative sleep to keep all of the other symptoms manageable.
So this is my never-ending cycle. I stress to get enough sleep each night. I become panicked when I lose the rhythm of my sleep cycle and then it can take weeks (no joke) to get it back.
In the meantime, I can fall asleep when my body can’t take it anymore, but I will wake within a couple of hours feeling lousy, but wide awake. I lose that feeling of being able to stay sleep and I am up out of bed, again.
The trick to living a satisfying life with fibromyalgia is all in understanding your body and managing your symptoms. It’s about eating well, staying active without overdoing the activity (another tricky thing to learn) and getting solid sleep.
There is no choice, you can’t run your life in a reckless manner. It can be exhausting to stay so aware of how best to take care of yourself. Each day I make sure I get the proper amount of sleep, I can’t spend too much time standing or sitting (movement keeps muscles from stiffening up) and I can’t overdo the junk like caffeine or sugar. Without the right combination of management, my symptoms flare up. getting back on track takes weeks and is miserable.
If you have an autoimmune disease, what do you struggle with the most?
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Wendy McCance
To contact Wendy McCance about a writing or social media assignment, interview or speaking engagement, please email her at: [email protected]
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Hi Wendy, the sleep issue is the most evil part of having fibromyalgia. If I get in the bed at 8 p.m., which is totally impossible for me, I would lie there until about 12-1a.m. thinking of all that needs to be done, watching TV, or just trying to go to sleep with this gnawing pain all over my body. So, instead - I stay up until I cannot stay up any longer. Yes, I feel worse in the mornings — sometimes; but then at other times I may feel like my regular fibro self (still in pain, but no worse). I am in school and I work. Therefore, I cannot be in bed before 11 pm. or 12 a.m. When I get in from work, I have to cook, then 3 days out of 7 I have bible classes from 7:30 p.m. - 9:30 p.m., then I have my schoolwork, and just regular ol’ living stuff that we all have to do. Fibromyalgia really takes the fun out of life. But…what can we do but try to manage it the best we can.
Hi Barbara,
Your way of handling sleep sounds like what I have tried many times. It sounds like you are managing your fibro fairly well. Wishing you all the best. 🙂
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Wendy,
I’m so sorry you have to deal with this. I do not have a chronic illness but through the blogging world have become friends with several who have. They have done an amazing job educating people, including me, and I feel like I can better sympathize with those of you who struggle with this. Here are two sites you might be interested in if you’re looking for community
http://fromthefog.me
http://www.justmildlymedicated.blogspot.com
Praying you get some restful sleep soon.
Vicky
Love the links. Thanks so much for sharing them. 🙂
Hi Wendy, I was suprised when I was reading your article on Fibromyalgia because I, too, suffer from this relentless syndrome. I was diagnosed in 1990, at which time I had pain in 11 quadrants of my body; now I have it in all 18 quadrants. Nothing relieves this pain. Lyrica makes me sick, as I did try it — but I am not comfortable with taking pills that have major side effects. I realize that all pills have side effects, but I try to steer away from the ones that mess with your cognitive level.
Fibro has kept me up many nights tossing and turning, crying and praying to be released from this pain. It is a deep, silent pain that grips the tendons and ligaments throughout your body. I have tried just about everything. I can not take the major narcotic drugs, because I would not be able to work. I do not want to be drugged up anyhow. Now I take nothing. I have learned how to accept it, not fight it. I know what my triggers are, such as too much sugar, lack of sleep, stress, and inactivity. I stay in an exercise program to help, although I still have pain daily. My lack of sleep is due to my fibromyalgia. When I am more stress, my fibro is worse.
As a result of my not sleeping, I wrote a booklet called, “The Painful Reality of Fibromyalgia”. http://www.thepainfulrealityoffibromyalgia.yolasite.com. In this booklet I share the way I developed Fibromyalgia, various conditions and disorders associated with this condition, herbs to make you feel better, vitamins and supplements that our body needs, what and what not to eat, other multidisciplinary therapeutic programs that will help bring relief, and my sleepless night poems about my pain. If you get a chance, check it out.
In the meantime, I will keep doing what I do to understand more about Fibromyalgia, in order to help me to endure. I use to feel so alone, but there are millions of Fibro sufferers today, and it is good when we can vent and share our feelings with those who understand, that Fibro is not all in our head — it is real, it is alive, and it hurts 24/7.
Take care and hang in there!
Wow, I can’t believe you have it too. I have an incredible dr. He is in Southfield and his name is Dr. Brystowski. I highly recommend him. He has me on two medications, Etotolac and Orphenadrine for pain and inflammation. The medicine doesn’t make me sleepy or spacey. I have had no bad side effects taking either pill. Honestly, they have been a lifesaver. There were a few times I tried stopping the medicine because I felt fairly good and thought I could manage without it. Within two days I remembered why I was taking the medicine. Wishing you all the best. 🙂
Hi Wendy, thank you for the referral. I will definitely check him out.
By the way, do you or did you have tremblings like vibrations going on inside of you in your leg, arms and sometimes all over. It is not vibration on the outside,but on the inside. I feel it more when tying to sleep at night. So annoying.
Yes!!! That’s so crazy that you asked. I had never known anyone else with fibromyalgia and some of the symptoms I experience I never read about under any articles on fibromyalgia. I aslo get electric shocks in my lower back, arches of my feet, palms of my hands and up my legs. I have also gotten tremors and have been known to walk poorly. It’s like I lose all of the strength in my legs. Sorry didn’t mean to go on and on, but now I’m curious if any of that sounds familiar to you. Take care.
OMG! This is unbelieveable. So, you get tremors in your body as well? I also feel like I loose my balance from pain in my hip and legs. I too, have pains in my hands, and charlie-horses or electric shocks in my back, near the side of my back. It catches like a charlie horse. I have problems with my arches on my feet too. I did not think it was related to Fibro, but maybe it is. I can go on and on as well, its ok. We need to be able to vent like this so not to feel so alone.
For the longest time I kept thinking I had been misdiagnosed because I never read about these symptoms. I find that lack of sleep and trying to do too much (which most people call a “normal” day) is what triggers the most problems. It really is a delicate balance. As long as I am able to keep the sleep and activity in line, my symptoms are pretty manageable. If I crash though, it can take several days to get back to a decent state. Before I was first diagnosed with fibromyalgia, I thought the tremors and walking problems were because of my Graves disease. One of the things that I like best about the doctor I mentioned is that when you mention symptoms you think are strange, he doesn’t react as though you are crazy. He gets it.
Aw, my friend, I wish I had some magic to send you. Alas, I don’t. I do love how you are able to teach and educate about this health issue is and how it can be so debilitating. Not many really know or understand it. Hugs. 🙂
Thanks. Have a great weekend. 🙂
I have had fibro for 8 years and I know what you’re going through. However, there is medication that would surely help you with the pain and the sleep. Elavil or Amitriptyline has always been a part of my treatment. It’s believed that it helps with pain and stiffness and helps you sleep! I’ve been taking this since my diagnosis and I never have any issues sleeping. Ask your doctor if this would benefit you. There’s almost no side effects besides drowsiness. I hope this helps!!!!
I took Amitriptyline for about a year when I was first diagnosed. I had gotten such little sleep that I actually went to a physicla therapist because I could barely walk. I have been off of it for a few years now. For the most part sleep has been much better. Every now and then, I do go through a cycle where it’s like I forgot how to fall asleep and I have to put effort into making sure I take naps or sleep in late whenever I can until I get back on a cycle. Thanks so much for the advice. I really appreciate it.
Hi Wendy - it must really be hard to deal with the lack of sleep not to mention the physical aches and stiffness that goes with it. Yet, you’re such a trooper to move forward and keep writing. I’m proud of you girl.
Don’t give up. You’ll find a remedy or system that works just for you. Have you tried anything else to your normal regime, i.e. meditation or acupuncture?
I have had a few massages, but not much luck. I have thought about acupuncture. My husband came home from work early and put me to bed. Then he took care of the kids so I could try and sleep. He’s such a great guy. Thanks so much for your comment. 🙂
It sounds like you do have a great guy! To watch the kids and let you sleep is a God send. I hope you find some additional aids that will help you with this so life will get easier for you. 🙂
Thanks. 🙂
My heart is with you! May I share some affirmations with you from Mystic Marks: Bookmarks for the Soul
I am enjoying wonderful HEALTH and WELL-BEING. My body is functioning perfectly just as designed. My senses are WIDE-open, appreciating all of the GIFTS awaiting me.
When I awake in the morning, I always look forward to the delightful DAY ahead of me. I include JOY and GRATITUDE in my thoughts and activities and many moments of being especially MINDFUL of what I am experiencing.
My body is always leading me to a PATH of Vibrant Health. I LISTEN to its wisdom and HONOR its messages.
It is easy for me to make healthy, nutritious FOOD CHOICES and drink generous amounts of WATER. Just thinking about the Beautiful Effect they have on my body makes me want to include them in my glorious day.
I delight myself with the GIFT of peaceful slumber. I awaken naturally when I am ready to experience the BEAUTY of a New Day.
Thanks.
Hi Wendy,
What a great post. I learned about fibromyalgia in nursing school, but it is so different to hear it from a patient’s perspective. There is a complete picture.
I always find it fascinating, though, that no matter what our respective health issues are, most of the lifestyle treatments lead down the same road: diet, exercise, relaxation techniques, overall positive attitude. Each one may get tweaked a bit, but they all go down that same road.
For my issues, I changed my diet and it made a huge difference. No more fatigue, no more roller coaster. It feels great to be a better version of me. Take care.
Karina
Thanks so much for your thoughts Karina.
You might want to try taking a magnesium supplement for the cramps and pain at night. I find it also helps me sleep. I am a diabetic and leg cramps used to be something awful till I started taking magnesium at night. I also take potassium during the day which also helps with leg cramps. I too have trouble falling asleep and staying asleep, but then found out I have sleep apnea. But again, the magnesium helps so much! Hang in there Wendy, I find that you sometimes just have to ‘experiment’ with supplements to find what will work for you.
Thanks for the helpful hints. I really appreciate it.
I was diagnosed with this many years ago. Management is key, I still have a tendency to overdo and I pay for it.
That’s probably the toughest part, trying not to overdo it. Thanks so much for your thoughts.
Wendy, I have MS and I struggle with the difficulty sleeping and the stiff muscles, too. I have two things to share: 1) I use my cell phone as an alarm, too, but the phone doesn’t have to have the ringer turned up to work. Leave your phone on, but turn your ringer off. 2) I know that awful feeling when I fall asleep early for an hour or two and then wake up. I’m up for the night. I think what is happening is that your body registered that time as a “nap” and then you’re wide awake. I also read that those early evening “naps” work twice as powerfully as an earlier-in-the-day nap. You must push through that early evening tiredness and wait to go to bed for the night until at least 10 p.m. Do you take a nap during the day? I find that helps me keep going until the late news.
We’re all programmed a little differently, but maybe you’ll find someting here that is useful to you. Good luck.
I can’t believe how much your experiences sound like mine. Many times I do take a nap for an hour or two only because I literally can’t stay awake. I wish I could take a nap now, but even with just a few hours of sleep, I feel too wired. I am just going to get an alarm clock and forget about using a phone. Take care, and thanks for sharing your experience.
It’s what you write, and how you are real with it, that inspires those of us who may be disabled in some way to see we are not the only ones. I choose to use the word “enabled” simply because if I had not been “disabled” I would not have been enabled to do what I love to do now. Thanks Wendy for all you write and do..
Wow David, your comment means the world to me. Thanks so much. I love the “enabled” instead of “disabled” comment. It’s genius. Take care.
Wendy,
I didn’t know you and I shared the same condition. I was shaking my head “yeah” while I was reading the entire post. Like I saw someone, Fibromyalgia is a pain!
I’m taking Culterelle probiotics before bed. Probitotics are good to take and frankly, there are better brands out there. BUT I’ve learned that the Culterelle brand makes me sleepy. That’s why I pop one an hour or so before I go to bed.
I still wake up for my overnight bathroom trip….but I can go right back to sleep because the probiotic makes me groggy. I tend to sleep deeper too. This is all because probiotics create serotonin in your body. The first side effect of serotonin is relaxation and sleepiness. When I took anti-depressants years ago, I learned to take my pills at night, and save the “wired” feelings for the daytime.
I also struggle with executing a serious exercise plan. I want to go all-in but I already know I’ve got to pace myself with Fibro. I was walking 3-4 miles pretty frequently for a while, but my body crashed. So, here I go again, but not 3-4 miles. I’ve got to take baby steps, so that I can develop strength without “crashing”.
And dealing with “Fibro-fog” when you work as a writer for a living? Don’t even get me started! But I’ve learned to stop fighting the fog. Sometimes I switch work assignments. Sometimes work gets done later when I’m feeling more coherent. Sometimes, I need to take a day off. I’ve learned to listen to my body.
Hang in there. Venting about it does help
I love getting these type of comments. It’s so reassuring to be able to relate like this to another writer. I have to say that writing has been the greatest career choice. I can always get the work done, even in pj’s propped up in bed on the laptop. Until I started writing, having a job outside of the home was a horrible struggle when I was having an off day. Take care and have a great weekend.
In spite of your condition, you move forward and continue to write great articles. My hat is off to you, Wendy. You are an inspiration…
Thanks so much, that means the world to me!!
Thanks so much, that means the world to me!!
Thanks so much, that means the world to me.
Thanks so much, that means the world to me.