The Torturous Fog of Fatigue

The Torturous Fog of Fatigue

Of the many autoimmune diseases I’ve developed since my CRPS began almost four decades ago, the only one that rivals it is fibromyalgia. Not because of the muscle pain, but rather my nearly constant state of deep sleep deprivation.

In 2000, after having CRPS for 18 years, I met advocates with fibromyalgia and we exchanged our symptoms and experiences. While it was a comfort to talk to others with severe pain, I never understood their crushing fatigue. I wrongly assumed that they were tired, like me, due to their pain keeping them awake most nights. In fact, I used to confide to my partner how much I wished I’d gotten fibromyalgia rather than CRPS because the pain seemed so much more tolerable. WRONG!!

Cynthia Toussaint

Shortly thereafter, I started having a new kind of pain. They were points in my body that ached rather than burned and when I pushed on them, the pain radiated. Troubled, I told my internist about my new symptom – and she advised that I was working too many hours sitting in front of a computer due to starting my nonprofit For Grace. Relieved, I made her recommended ergonomic adjustments. But rather than improving, my symptoms morphed into a debilitating fatigue that I could never have imagined possible.

At about 8:30 each evening, I’d be overwhelmed with the need to fall asleep. Never a napper and always a night person, I was perplexed when I realized that I hadn’t seen the end of a movie in months due to nodding off on the couch. In fact on my 40th birthday, John brought home Gladiator. And while I loved the film from the first frame, about 20 minutes into it I surrendered to the fatigue – and slept through my New Year’s Eve birthday.

Through my nights, I’d wake every hour starting at 1 am, and I began thinking of myself as a ghost. I didn’t feel human because I was so effing tired – and in such a fog. The morning brought anything but relief as I literally forced my body to sit up, exclaiming “I’ve just been through a war!” The work day was only and all about trying to hide my fatigue, which was nearly impossible when often chin in hand, my head would slump forward nearly striking the desk. As a spokesperson I couldn’t find my words which was scary and humiliating. Somehow when verbalizing colors and time, they always came out wrong and my sentences were jumbled.

After putting off an obvious diagnosis for months because I didn’t want to be labeled a “sickie”, I finally ran up the white flag and asked to be assessed by my integrative doctor. One catastrophic disease is enough for any lifetime, but I knew I couldn’t get help without the fibromyalgia tag. Trouble was, like so many autoimmune diseases, relief was elusive. Besides acupuncture, my doctor tried to get me sleeping restoratively with lavender oil, melatonin and valerian root, all to no avail. Then he dug deeper into his medicinal bag of tricks. After a “baby dose” antidepressant didn’t help, the muscle relaxant Flexeril DID, mercifully.

To this day I take a small dose of Flexeril three nights a week with some success. At best I’m semi-fatigued with an all-day hangover from the medication. When I don’t take it, like today, I’m in a fog with debilitating fatigue. Keeping my eyes open and body upright is an endless struggle. And though I get a lot done throughout my exercise and workday, I’m always afraid that tomorrow I won’t have the choice to force myself up and out. Pajamas are often my regular dress ware and I’m working more and more from a couch. On the days when I have to get out, I admittedly think of death as the only way out of this relentless torment.

Compounding this slog is that no one gets it. I rarely mention my fatigue because I’ll inevitably hear a response like “take a nap” or “I know, I know, I’m pooped too.” On one particularly bad day while impossibly doing my pool laps, I lamented about my fatigue with the lifeguard. I asked if he’d heard about fibromyalgia – and he responded with, “yeah, I know enough about it to know that it’s not real.” Ashamed in front of other swimmers, I corrected him by saying that it’s very real and debilitating. The confrontation exhausted me more.

I pride myself on keeping a stiff upper lip while pushing through my dozen-plus comorbidities. Like so many of us women in pain, I’m tough, goal-oriented and a doer. But this fatigue, right here, right now, is shaking me to my core. What if I give in and don’t get out of bed one day? What if, like being bedridden with CRPS for a decade, my life ends again due to a fatigue-driven stupor?

I am haunted by fog.

Cynthia Toussaint founded For Grace in 2002. It is a Los Angeles-based non-profit organization dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.

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Cynthia Toussaint founded For Grace in 2002. It is a Los Angeles-based non-profit organization dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.

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Katie Olmstead

Hi Cynthia, I don’t have fibro, “only” CRPS and got only knows what degenerative stuff going on in my spine. I just wanted to share this with you. I started with a new pain doc’s office a few months ago. The first couple of times, I saw the PA. She said an incredible amount of things that were simply untrue, including one that could have killed me (offering me a drug that I had had anaphalix (sp) with a similar med). When I said that I woke up every day feeling like I had been run over by a truck, she, the young thing, shrugged and said, “Oh, that’s nothing, it happens to everyone when they get older.” B.S. Who with chronic pain doesn’t wake up feeling like crap?
We all try this and that. Glad the Flexeril helps you. I had a terrible reaction to that one and my doctor wasn’t the one who figured it out, it was me and googling it. I had dry mouth to the point of my gums bleeding if I tried to speak, and the muscle that it most relaxed was my urethra, hence a lot of stress incontinence. You have to hate when a doctor doesn’t see what is going on, what he had caused!
I am just griping. I am tired! I am learning, with the help of my beloved therapist, to slow down enough to NOTICE the MOMENTS in the day when I feel okay. It’s like catching joy but I have to be vigilant. Those moments don’t last long.
Take care, sweetie.

Cynthia, I know how you feel because, I feel the same way. People don’t want to hear about it after 10 years. T
he pain is mighty! God Bless you and keep on fighting today for who knows what tomorrow will bring. Sleep is hard to come and when it does you wake up tired and in pain every day. When my skin burns I have trouble wearing shoes. I have lots if shoes but can’t wear any.

Christine Sparks

Cynthia Toussaint, I am in awe of you. Yes, you were in a debilitating fog when you wrote this eloquent piece, but YOU WROTE IT! You mention your commitment to exercise and your wonderful organization For Grace in passing here, yet I am knocked out by what you are still able to accomplish. What a role model you are, certainly as well as other regular contributors here.
Thank you for being who you are and for shining a light for so many of us. I send you love and light and gentle hugs that you may continue to do so.

Dearest Cynthia,
Thank you so much for taking the time to stop and share your heartfelt stories with us. You have such a beautiful heart! I want to be more like you. We have many great writers from the National Pain Report although I favor you and Liza the most. The two of you have been blessed with a beautiful gift of bringing your feelings and ours to life in black and white. It’s such a tragedy that you have to suffer as you do. Well, it’s a tragedy that we all have to suffer the way we do. Our spirits, sheer determination and a lot of fortitude is what keeps us going, even on the worst of days. (That’s something that’s hard to find in a lot of healthy people I know.) I pray that God continues to work through you and for you giving you the miracles needed to help all that comes your way. Prayers also for a beautiful day!🌷🌸💐

Denise Bault

Have had fibro for the last 15 years – diagnosed, that is. Probably had it much longer. The pain and fatigue are relentless! I have not had a good night’s sleep in that length of time. Have tried EVERYTHING known to man, and you’re right, people JUST DON’T GET IT. It is torture! After all, that’s what is done to prisoners of war, right? Sleep deprivation and pain infliction. I feel like I’ve been tortured and am still being tortured, despite all the things I do to alleviate both. And on top of that, I LOOK fairly healthy! What a double whammy. Now I try and listen to my body, nap when I have to and the rest be damned.

Dan Kemp

Serax or oxyzepam for sleep as for the rest much suffering is required by law.

Cherie

I so understand the fatigue fog..on 15 pills for everything from diabetes to arthritis,and more..and working night shift in hospital..after a sleep study which showed constant movement,my Specialist put me on modifinal…very expensive..but it literally woke me up . Being out of fatigue fog was so amazing….8

Jeanette French

Can so relate, same here, sleep is elusive and docs want to keep changing what works for me, so frustrating I could just scream !

Linda Dorris

Cynthia, i have been suffering the same problem. I am so weary and exhausted sometimes i want to quit the fight . I do not have the ability to see my siblings very often, and it is because i care about them so much i could never harm them in that way. Keeping my oath i made when all this started is at times a huge struggle. I have Fibromyalgia with systemic Sclerosis/Scleroderma . Plus other issues. Every day i have been thankful if i see a beautiful part of this world. Prior to becoming comprised i used to run. I loved the feel of absolute freedom. Every day i was so thankful certain parts of my body still worked. I suffer alone i do what i can for others and i strive to live. Since this insurmountable fatiuge has hit me full time i have forgotten how to live life. I just want some sleep, i wake up every hour on the hour. The night before i tell myself tomorrow i will awake and not feel like a mac truck had run over me. So far i have never awoke roaring to go and happy to see the day. 100% of my days i awake and tears come to my eyes because i am as i was the night before. I ask for just one day so far my request has gone unanswered. I get ready to go somewhere and even though i put my things that i need to take in the same place I will pick up some thing and forget where i set it. I do use a muscle relaxer but it doesn’t help me sleep. Not only do i battle these rare deseases but also just wanting to not be so so tiered. of course even though 5 Doc said what is going on, all have left this state and i am humiliated because the other Doctors, wont look at what is . They don’t Know anything about these illnesses or they don’t want to know. So i fight, i struggle, i pull myself around my home, i wet my pads and loose control over my bowels, and i weep tears of agony and humiliation. I scream enough, in my head, i asked to be released from my suffering.Yet i go on i have to because i made a promise i will not break and never would i hurt my siblings by giving up

Diann

Unfortunately flexeril caused me to night eat and do things in my sleep. Over 50 years of this and I’ve tried everything. I have a sleeping pill that helps, and a different muscle relaxer I can take in emergencies. I’ve decided for myself to do that if I go 3 days without decent sleep. I wish At least my doc is as helpful as possible and my family is understanding.

LMC

Right there with you! Due to RDS I can sleep about 20 minutes consecutively, 3 or 4 times in a 24 hour time period. I now have difficulty thinking, speaking and remembering. For example, after reading your post, I would have sworn I had read it on this site before!

For 15 years medications like Ambien, Sonata & Xanax, all of which allowed me 3 to 4 hours of consecutive sleep. Now that everyone thinks combining pain medication and sleep medication can cause respiratory failure, up to and including death.

Personally, if it hasnt for the past 15 years then I’m willing to risk it. And if one day it does, so what? I am willing to assume that risk. Everything is risky! For example, surgeons prepare patients that all surgery is risky, they could die on the table, and yet most patients go ahead with the surgery regardless of the risks.

Good luck.

nana

The “fibro-fog” is real.

Sometimes my head barely makes it to the pillow before I am out. But upon waking I could (and do) sleep 12 hours more.

Many times it is just a fog I must battle through. My mind can’t quite concentrate down.

I have found nothing works but sleep. Luckily I am retired and seldom have early appointments.

Thank you for your story.

Monica

I read this article and began to cry….it describes my feelings and pain perfectly from fibromyalgia. Yes,people don’t understand but from my point of view, I would rather be canoeing, golfing, and hiking…why on earth would I want this pain to keep me from living the life I want?

Tera C Crayne

Have you tried LDN with melatonin with CBD?

Martha

Hi Cynthia! Thank you for posting & sharing the very real & very disabling problem most CPP deal with – sleep disorders. I have not had a stretch of over 4 consecutive hours of sleep in over 5+ years. It is beyond horrible and so destructive to our bodies. You are right, people don’t get it – they do say, or at the very least think: why dont you just take a nap?? Duuh. Most CPPs awaken every few hours due to pain & discomfort. Allowed only a certain amount of pain meds daily…we simply suffer through it. We try to distract ourselves by reading, or standing up to move a little bit to try to get more comfortable, etc., in order to try to get back to sleep. The brain fog is real & awful. I am glad Flexeril (sp?) is working for you. It didn’t work for my muscle spasms but Tizanadine did. Others find some nighttime relief with tri-cyclic, low dose anti-depressants. For our fellow Pain Warriors – keep advocating for yourself, and keep trying different meds other than just straight pain killers. CPPs need a ‘toolbox’ for our varying types of pain. I look at them as a source to try to outsmart my relentless pain. Nothing works completely, but there are days where they help enough to enable me to get through my day at a level 5. That’s a good day for me. Hang in there & keep sharing. I hear you.
Martha

Judy Dunn

Cynthia, I am a 70yr old CPP who has several chronic diseases since 1992.
I have muscle, bone, lung and nerve diseases. Fibromyalgia is one of them. I
Was given trazadone to help me sleep, but my Doctor didn’t check my diseases,
I have Sjogren’s which causes dry eyes, dry mouth, etc., which became severe
With me. Maybe it will help you get the sleep you need, ask your Doctor.

I wish the Doctors of today could go back in time and meet the Doctor’s of
The past to show them how Doctor’s really cared about their patients and
Not about the money.

Good Luck Cynthia.

Sandy

Cynthia, I get so much from your articles. My daughter has lived with pain and chronic fatigue for about 10 years from Ehlers Danlos Syndrome and has now been diagnosed with MS as well. Thank you for continuing to raise awareness!

Thomas Wayne Kidd

I have suffered from chronic pain without mention of trauma for the past 35+ years and I have had Narcolepsy since I was 9 or 10 years old. I am always tired and even though I sleep way to much I never get rested up. Sadly doctors know little to nothing about the causes. For the past several years it is as if they go out of their way to limit medication that actually helps both pain and the wakefulness which patients with Narcolepsy actually need. All this is supposedly done in the name of fighting drug abuse. I am convinced that the medical field’s lack of concern will shorten the lives and millions. Suicides continue while politicians and medical people talk and do little or nothing. I saw in end of the 20t. century to 2006 when they did this to many patients which caused suffering then. Why they blame legitimate pain sufferers is insane to say the least. Back then the addiction clinics popped up like buzzards as they have since this ramped up 3 years ago. Now they are trying to push treatments which are useless like they did back then. I fear this insanity will only get worse. I pray that it doesn’t. Thank you for your comments.

Debbie Nickels Heck, MD

I just turned 64 but my mental energy makes me feel closer to 50. Unfortunately my fatigue often makes me feel like I’m 80 after starting a walk at a pace that outdoes college students. I feel I’m living in a mismatched person’s body. My ideas and goals are in one decade while my ability to accomplish them are in another. Taking the correct dosage of ADHD medication is a lifesaver but unfortunately my Dr made a mistake in writing the last 3 months’ Rx and I’ve been struggling to keep up because insurance only pays for the 90-day script once if a mistake was made. I understand this but it’s a struggle waiting for the next Rx period to come around when I have gardening and grandkids to enjoy during the summer.

Phyllis Bobay

Has anyone looked into BII, Breast Implant Illness. It seems to me that most of my Drs. Do not believe in BII. I have all the symptoms of the disease. I am scheduled for a consultation with a Dr. in a complete different county then where I live because the plastic surgeons where I live do not believe. I will have the poisonous bags removed so that my health can improve.

Heather

Have you been assessed by a sleep doctor? Don’t fall for the stereotype that you have to be overweight or Male to have apnea. I am treated and my apnea is controlled but I have major fatigue that the doctor thinks may be narcolepsy. My grandfather had it, I learned after my doctor brought it up. I was not close with that side of the family.

Alanna Wilgus

Try Low Dose Naloxone. It has changed my life!