What sleeping is like when you have fibromyalgia

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Sleep is defined by Merriam Webster as:

The natural periodic suspension of consciousness during which the powers of the body are restored

Sleep is defined by a fibromyalgia sufferer as:

A period of time you lay uncomfortably conscious in bed, totally exhausted but unable to rest and restore

Fibromyalgia is a funny (okay, cruel and ironic) thing. You are always exhausted. Totally, unbelievably exhausted. Physically, mentally, and emotionally. One would assume that someone with fibromyalgia sleeps all the time, but you know what assuming does, right?

Sleep is difficult, frustrating, and most times non-existent for someone with fibro. I personally don’t sleep for more than an hour at a time, and if I get a total, combined 4 hours a night that is a good night. Sleep is usually just a few hours of dozing off and on.

As a fibro sufferer, you need sleep, you crave it. But are in so much pain you can’t find any comfortable position. You try different mattresses, pillows, couch, floor, anywhere. You try reading, watching TV, and total silence and darkness. You try melatonin, muscle relaxers, sleep aids. Lavender bath bombs and lotions. Marijuana. Various versions and CBD products. You try it all.

And, guess what? You still can’t sleep.

It’s not just the physical pain that affects sleep. With fibro comes depression and anxiety. (Again, fibro is a cruel thing.)  As you lay there hoping, and praying to whatever you believe in for just a little sleep, you begin to get so overwhelmed with how terrible it is. Then you do what everyone tells you not to do. You check the clock. “Okay, my alarm goes off in XX hours.”

Then anxiety enters. How am I going to make it through work? Do I have enough concealer to hide the giant (permanent) bags under my eyes? I hope I’m not a giant a-hole to everyone today. Please just let me fake it til I make it.

I relate sleep to the five stages of grief:

  • Denial – You are so exhausted you have to sleep. There really isn’t any way you can have another restless night…. right? 
  • Anger – i think this is pretty self-explanatory. It’s so frustrating, and so unfair. Life dumped this terrible disease on you and won’t even throw you a bone and give you a little bit of sleep?
  • Bargaining – Okay. Give me 2 hours and I’ll take a bad pain day. I will actually choose to have pain just so i can get a little sleep. PLEASE. 
  • Depression – We covered this already. But, yeah. It sucks.
  • Acceptance – Well, this is it. Another night of minimal sleep. This is my life now. 

Related article:

Our contributor Jessica Streed explain stages of grieving in detail


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7 Stages of Grieving in Fibromyalgia Sufferers

There is no right way to go through these stages and many will struggle with “how” to get through these. I certainly don’t have the right answers, and if you really want to know the truth, I’m not sure I have successfully gotten through any of the stages. So how does a person navigate these stages, how do we know if we have gotten through them?

This will be a highly personal article for me, I will share some very personal things with everyone because as a friend of mine just said, “I share for transparency. Too many times hide the hard stuff”. So perhaps this will be a way for me to move through some of the stages of grief.

So how does a person move through the stages of grief?

When people experience grief, or the stages thereof, you may find, as I have, that you might just wander through each stage, feel some common feelings others experience with each stage. But what does it really mean to get through each stage?

Acceptance is the last stage of grief, but perhaps it is a part of each stage, or the completion of each stage. And if you can get to the acceptance part of each stage, then maybe you successfully “get through” it. Perhaps that’s the end of your grief, you move on and your life is now moving forward and you learn to live what your “new” life will be.

But for many of us, this process of grieving may never end. It may be like a song on continuous repeat, we tiptoe through each stage, experience the feeling of each phase and move to the next but with no real resolution. Or, you move forward and then regress to an earlier phase or, begin again at stage one yet again. There is no timeline, or arbitrary amount of time you will spend climbing this ladder or moving from left to right like reading a book, reach a new level, or, however you look at these stages, no timeline to move on.

As I said before, I don’t have the right answers, and, will be the first to tell you, I have struggled, and I am currently struggling, through this maze of grieving for who I once was, what my life used to be, and what I “left behind”, as well as feeling and trying to understand the things I think my family is feeling or experiencing now because they are also going through some form of grief.  

Let’s begin at stage one and work our way through them. I’m not saying you will successfully get through all of these stages, but I will share my journey through each of these as I have experienced them and as you will also see, I may not have successfully “gotten through” each stage, I just “experienced” each stage.

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1. Shock

So, stage one; SHOCK!!!! Well, I think I can safely say, this is one stage of grief that none of us were actually shocked at. In fact, many, if not all of us, knew what we would eventually hear this diagnosis from our doctors/specialists the day we got, “The Diagnosis.” This stage is likely an easy stage of grief to go through as many of us will skip right through this. We are not strangers to what news we will hear.

But, we will struggle with the diagnosis from the fact that, those who have this condition, know there are limited treatment options. I know I was not shocked at all by this diagnosis, in fact, like many of you, we suspected or knew what was going on, we just couldn’t find a doctor who took our concerns seriously enough to investigate it. For some of those struggling with Fibro or chronic pain, you have had some success with the treatments available, good pain and symptom management.

So, you either jump to Stage 2, or this is a short process and you move on with your life and treatment, you don’t need to experience the remaining stages of grief. In a perfect world, we would all be able to do this, but as we all know, this is not a perfect world. So now we try to move on to Stage Two.

2. Denial

And stage two is, denial. Now this is a stage we have all been through but may or may not be struggling with. As with stage one of “shock”, denial is a very common feeling as well. Even though we knew deep down what was going on, we try to deny what is and hope there is a more “rational” explanation. This is likely because as we all know, there is a stigma associated with fibromyalgia.

Maybe it’s a “catch all” diagnosis given by doctors who can’t figure out any other causes. Or as many of us have heard, it’s all in your head, or, you’d feel better if you tried to get some exercise and lost weight. And maybe some of us go through the denial stage fairly easily and find that we knew what was coming, and, well, it’s a foregone conclusion of what we are dealing with and we have moved on to “acceptance” of this stage, because we knew this diagnosis was coming, why deny what we knew. No shock, no denial, but maybe we have the overwhelming feeling of finality!

Finally, we have someone telling us what we have suspected. Whether it’s been weeks, months, or years, someone has finally “HEARD” what we are saying. The feeling of finality, of someone finally hearing what we are saying is going on and acknowledging what we are feeling, is a pretty satisfying feeling. This is a kind of subjective stage of grief however.

Many are ready to skip the denial stage because it’s an unnecessary stage. It’s been a diagnosis that has been in the making for a long time. Why would we deny a diagnosis that we knew we had, we knew was destroying our lives? Well, perhaps the denial comes in the fact that no matter what we knew was going on, we want to deny that our body has turned on us in this way. We want to deny that the life we once lived and enjoyed, will no longer be the same? We want to deny that this beast has entered our lives and has caused the trajectory of our lives to change paths, to change from what we “thought” our path would be to the path that lies ahead. Denial of the life we are now faced to live.


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3. Anger

Stage three is anger. This is a stage I know well, as I’m sure most of us do. This is a stage I have a very difficult time “Accepting.” This is a very difficult stage of the grieving process for most, if not all of us. If anyone who has Fibro knows, anger is a very real part of the grief process. We are angry about what our lives have become because of our condition.

For those who have not been able to find any kind of relief from any treatment regimen, we are angry that there are limited options. We have been through the process of trying “this” for a period of time, if that doesn’t work, try “that”, etc. We are angry that the limited treatments out there are not working.

Anger takes a hold of us, why did this happen to us, why do we have to live life in pain, why is everything we do in life dictated by pain? The “whys” are the hardest to address, especially when your life revolves around family. You need to be with them, you want to enjoy spending time doing things with them but why do you now have to live like this and choose between your family or relenting to your body and miss out on so many plans.

If you are still able to work, you are angry that you have to deal with your pain and fatigue while trying to maintain yourself physically to do a good job, or you can’t enjoy your job because you struggle through each and every day in pain, mentally and physically. So, you push, you push yourself to your limits. You become so angry that your life is nothing like you planned.

Related Article: How to Manage Anger in Fibromyalgia

There are so many things that cause you to be angry because of this condition, it is so hard to note all of them, and we all have anger about different things. I will be the first to admit, I will probably never get through this stage completely. There will ALWAYS be something about this condition that will make me angry. So, if that means I never successfully get through all the stages of grief successfully, then I’m ready to accept that because I cannot relinquish my anger at this thing that has stolen who I am and how I live my life. I am angry that I have to live the way I do.

4. Bargaining

The next stage is bargaining. This is not a stage of grief that I think is entirely relevant to a chronic pain condition. If bargaining means a lot of “what ifs,” then there is no resolution in my mind to this. There is no one specific cause of fibromyalgia or chronic pain so the hours people may spend thinking, “if I did this, then maybe I wouldn’t be here,” or “if I hadn’t done this, then maybe I wouldn’t be suffering.”

But for me personally, it’s like any other chronic illness or disease, no one could predict with any amount of certainty that we would end up with this, it just happened. As I often say, at least on my less awful days, it is what it is and even thought this will not pass, I will have to take it day by day and deal with things as they come.

5. Depression

The fifth stage is depression. This is also a stage I don’t anticipate I will ever complete, as many of us can attest to. There are medications that can help depression symptoms, but no magic pill that will take all those feelings away. Depression is a very complicated thing, I’m not going to go into all the medical nuances of depression as there are many cause and effects to this and it is also a symptom of so many things.

But for those suffering with chronic pain or fibromyalgia, depression could not only be a symptom but also a result because we find it difficult to look at how our lives have changed and will change because of pain, fatigue and the other symptoms that hinder our enjoyment of living. We are depressed by what we have lost or what we will lose.

We find we are depressed because for the “hundredth” time, we have to miss out on that family gathering, family vacation, night out with friends, or even something as simple as going to a movie. Nothing can replace the feelings we experience because yet again, we have to miss out on life. We will shed countless tears as our family drives off without us to have fun while we are stuck being unable to get out of bed, or off the couch. Depression will range from mild to severe.

Some will seek therapy to help get through this, others will rely on medications. Do what works for you, but don’t be afraid or ashamed to seek help treating this. I have done both therapy and continue on medication to treat my depression. Some days are better than others for sure, and again, I will readily admit that I am still struggling with this.

On the days that my pain is high, or my fatigue is unrelenting, I struggle. I struggle to find happiness in that day, I struggle to find the silver lining. I struggle to smile and I struggle to hide my pain and discomfort. My family is usually good at picking up on those days that I just don’t want to “do” that day, or that I can’t do those days. Other days, I’m able to plaster on the smile and say, “I’m fine.”

Related Article :  Things you can do to help your friend with Depression who is Isolating Herself

My best advice is, don’t do that all the time. Don’t put on the fake smile and plod through the day trying to be ok. It is ok to give in to how you are feeling, how your body is reacting. It’s ok to let yourself stay in bed, to tune out the world. But is also very important to not let that become your life. Taking care of yourself includes taking care of your mental health.

So, can anyone suffering a chronic condition ever get through the stage of depression? I’ll admit, I’d be very surprised if depression doesn’t touch a part of your ongoing life. But please, if it is getting too bad, seek help!

6. Testing

Stage six is “testing.” Now this is a stage that isn’t usually associated with stages of grief so this is a stage I’m not sure I have much to talk about.  The only way I personally can try to associate it would be “testing” myself and my limits. This is probably not uncommon for fibro sufferers.

There will ALWAYS things that need to get done. The laundry will not fold itself, the house will not clean itself, the dishes will not do themselves, and so on… Nothing about our lives can be indefinitely put on hold. But we need to test ourselves to learn our limits. Learn how far we can push ourselves to minimize the pain we will experience the next day.

Test ourselves to ask for help when we need to, stop and rest when we need to, and mostly, learn what we need to do to take care of ourselves. Always easy to say, always hard to heed! I admit, I don’t ask for help as often as I should. I may do things slower that I used to but I still do them without asking for help because maybe asking for help is admitting I can’t do it myself. This is certainly something I think we can all relate to at some point in this journey.

7. Acceptance

Finally, there is acceptance. This is another stage that I will likely never be able to complete. When I was in therapy, I was taught about a concept called radical acceptance. The easiest way to explain this concept is, you know what your future will be, and you have to find a way to accept this and live accordingly.

Now this is probably not the best way to explain this concept but it rolls into the final stage of grief, acceptance. I’m pretty sure there will never be a time in my life that I will be able to fully accept that this is what my life is now. I live it day to day, I do what I can, stop when I have to, and though reluctantly, will ask for help when I need it.

But these acts do not mean that I have in any way accepted that this is now what my life is. Yes, I “know” this is my life now and I try every day to deal with things as best I can. But I’m not sure that I will ever be able to accept this, accept my limitations, accept that my life revolves around pain, accept that I am not who I was even a few years back.

I can say with absolute certainty, I cannot accept that this condition is what my life will be. I will try my best to not let this define me and I understand that acceptance does not mean it will make it go away. I think the fear of acceptance is the finality of it all. I know beyond a shadow of a doubt that this will never be cured, no matter what types of treatment I try, I will not get relief, I will not heal.

But if I don’t accept this condition, does it leave the hope open that maybe I can find some better way of living, a way to alleviate my pain? I don’t know, I’m not an expert by any means. Will I continue to research treatments? Will I continue to try lifestyle changes as I already have? Of course, no one wants to accept that this is the life they will always have but to some degree, maybe I have accepted it because I know it will not change. I do know that unless a miracle treatment is found, I will continue to suffer.

So maybe I have gotten through this stage and not realized it. But, to again be fully transparent, I don’t want to accept this and I will always hate what it has made my life become. But I won’t quit. I won’t quit trying to find even a sliver of happiness in each day, remind myself what I am lucky to have, love my family and the gifts I have. I won’t stop trying to “start fresh” with lifestyle choices, exercising as able, whatever I can do to try to live as good a life as I am able to live.

So, I’m not sure if anyone can get past grieving who they once were, grieving what their life used to be, grieving about what they are missing out on. I know I won’t ever be able to resolve my grief about what my life is. But maybe we don’t have to, as long as that grief does not overtake who we are and keep us from living as best as we can.  

Also Read Jessica’s another masterpiece story “To the Husband Whose Wife Has a Fibro & Chronic Illness”


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