Fibromyalgia is life-altering. It has prevented me from accomplishing many of the goals I aspired to and always assumed I’d achieve. In the past, I attributed this fact to my wide variety of symptoms. But lately, I’ve begun to realize there’s another factor involved. It’s time — or rather the lack of it. I’m more limited by having only four good hours in my day than I am by any of my symptoms.
My day usually begins around 11 a.m. It’s not that I’m not up earlier than that. My bed is usually made by 8:15. It’s that most days I feel really bad in the morning. It’s never the same kind of bad, though. One thing I do have is variety.
Some mornings I’m stiff and sore all over. Other days my pain is limited to one or two places. When pain is my primary challenge, I employ the tools I know that are likely to help. It may be meditation, a hot shower, yoga stretches, or just moving around the house. Sometimes just getting up and dressed relieves the stiffness. If medication is needed, I take it then.
There are other days when I feel too depressed or anxious to function. Mood alterations like these are far more difficult to overcome for me. I can’t tolerate any of the medications available to help with this issue, so I struggle to get through it on my own. Although I’m not a religious person, I have become quite spiritual lately. Sometimes reading just a few pages by one of my favorite spiritual authors (i.e., Eckhart Tolle, Brené Brown, Wayne Dyer) can lift my mood to the point where I can begin my day.
And then there’s fatigue. Occasionally, I’m just too tired to move. It’s not the tired I feel after physical exertion. This is deep, profound exhaustion that affects every cell of my body. If I can accept this and forgive myself for it, it’s easier to overcome. Giving myself permission to go back to sleep is as productive as getting up. I wouldn’t have done much that day anyway.
Unfortunately, my worst and most frequent morning issue is irritable bowel syndrome (IBS). This can take several hours to control. I have the IBS variation that causes diarrhea (IBS-D) rather than the one that causes constipation (IBS-C). I suppose they’re both miserable to endure, but IBS-D makes leaving the house totally impossible. Imodium and I are a team. We do work together, but some days it takes longer than others. The most difficult aspect is that I never know in advance when those days are going to be.
After countless cancellations of morning activities, I’ve just resigned myself to starting my day at 11. This change in thinking has removed the stress that worsened the symptoms, so I’m happier with the result overall. I usually can count on functioning well until 3 or 4 p.m. However, once fatigue sets in, I’m done for the day, regardless of the time. Intellectually, I know that pacing (or resting before I’m tired) can extend my productive time, but I’m so determined to use my available time wisely that I have great difficulty doing that.
As a goal-oriented person, for many years I frustrated myself with unattainable to-do lists. I now schedule only one major and a couple of minor items each day. This way I experience a sense of accomplishment more often than I experience failure. I do as much as I can as early as I can. And I give myself plenty of applause for accomplishing as much as I do while living a four-hour day.
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What do you consider a big event a day, and minor ones?
Excellent description of my days, too.
Big airport trip tomorrow, so anxious. But have to because of family crisis. I hate to have to use wheelchairs….
💕
A 4 hour day is a good way to think of it. Mornings are hard for me but I enjoy my coffee & read devotional books for a few hours before I do anything else. I am blessed to be able to retire so it works out for me.
Wow – we’re sisters in fibro. What you describe is exactly what my days are like. Because I teach college I can schedule my classes to start at 1 and end at 4, and squeeze in office hours between 11-1. I have the same morning bowel issues which means at this point that I just have to skip eating in the morning, or else I could be dealing with diarrhea when it’s time to teach. This has meant struggles keeping on weight, and I know it’s not a healthy eating lifestyle, but it’s that or stop working – and I am not ready to do that. Don’t know if I ever will be, as when I don’t have at least those few hours a day where I’m working, I get depressed (and I can’t tolerate antidepressants either.) Although I wouldn’t wish any of this on you, it is comforting to know I’m not the only person in this same situation. I’ve often said that more than anything, more than the pain, the fatigue, etc., the most challenging thing, for me, has been a sort of crisis of values. There was that person I worked so hard to become, a PhD with an active research program, building a body of work of which I could be proud. Most of that is gone now. I can’t keep my research program up. I’m lucky to still be able to keep up teaching, but I honestly don’t know how much longer that will last. I know everyone pretty much reaches a point in their lives when they’re too old to continue with their former careers, etc., but I wasn’t ready for that in my 40s. Coming to terms with the fact that I’m not going to be the person I’d always aimed at becoming is the hardest part for me. I’ve gone on long enough. Thanks for listening, and thanks for your post. I really helped me. ((gentle hugs))
This article expresses exactly how my days go. My mind still says I can accomplish as much as I used to but my body says no and I have to listen to it. Like you, I don’t start my day before 11 or 12; no morning appointments or work, if I can help it. What I used to accomplish in 1 day now takes me 3-4 days. I suffer from fatigue most days, sleep poorly, go through all of the things that you have discussed. It made me feel a little better reading this and knowing I am not alone.
I am so grateful to be reading these comments. I have felt so alone for so long before and since my diagnosis five years ago. Trying to describe what this is like became too hard to do most days so I make up other excuses for being late, cancelling appointments, etc. I’ve read here the exact things I’ve said to myself! Like, ‘my mind wants to but my body can’t’. I want to be like everyone else, have a full day and still be able to attend an event with family, etc. All of the planning is tiring in itself. I am 55 and was laid off from my job of 15 years last week. I am trying to see it as a blessing but that is difficult so far. So worried about money and insurance. Again, I am so grateful to those of you that are sharing. I am brought to tears and overwhelmed realizing others out there understand. Thanks and blessings to all.
I feel the same. I just remarked,in a post, that I have 4 hrs. a day,that I consider functioning.Of course its fibro functioning,not normal, by any means.I get very angry about what this illness has done to my life !! I know that I have to accept that this is who I am now, but it SUCKS !!! I never book morning appointments any longer.Mornings are the worst for me. I wake with nausea,anxiety,depression, and pain.I am so thankful for facebook, and this group. It helps me to feel like I’m a part of the world,in a vicarious way. We all learn to cope in different ways.Sharing these skills in this group helps me so much !! We are not alone in this struggle,and for that,I am so grateful !! Onward and upward fibro friends.To war we go,EVERY SINGLE DAY !!!!!
For me the problem start a 1 pm the morning are not bad i am water aerobic instructor . but at 1 or 2 pm i can’t function I’m tired and not desire to do any thing I’m 60 years old with fms for 20 years it is very hard and some days impossible and i wasn’t to cry and get angry . It is hard țo read for me buti continue trying do th give up do what you can challenge yourself a little but noir to much or you will pay for free days. Thank you for this post it help to know that I’m not alone. Water exercise help a lot
Wow. This is the first article that I have read that describes
my life. This is so difficult. People remember the old me and don’t believe that I can’t do it all now . My home is so disorganized. I try and just
get frustrated. I was able to retire in December 2014 and that helped. I can set my own routines. I am as active as possible. I have 3 high maintenance dogs.
Thought I’d add something I learned from an MD Physiatrist, that did an exam in me…. She said IT Band (Illial-Tibial Band SEVERE tightness & pain / burning) are now part of the definition!! I had SEVERE burning /painful fitful nights.. As my outer hips burned & hurt! It was ” NOT in my head!!” It is now included in the bi-lateral pressure points that connote this Fibro definition!!
Additionally, learned THIS week, on Pintetest, that experts have learned that Fibro may be tied to nerves in our HANDS!! (Which contribute to numbness/ tingling) OMG!! I’ve only had 5!!!!! Carpal Tunnel/ DeQuervain’s Syndrome surgeries on BOTH hands!! Can’t wait for more info on that!! Just need help sleeping!!!! Sooo exhausted!!
Also, I was in ANOTHER car accident, where the airbag deployed. It resulted in the 200 mph impact on my chest/upper stomach. Since then, I have been nauseated & experienced THE worst stomach pain/ digestion issues!! I was Dx’d w/ GERD/ Haital Hernia w/ healed Esophageal ulcers (cured H Pylori stomach infection way back!!) also.. I try to be careful w/ Anticholernergics: Flexaryl, Benadryl, Prilosec, benzodiazepines ie Xanax Antivert.. Amitriptyline (Elavil) .. Thorazine.. Etc.. (Google the Rxs) That hasten / accelerate Alzheimers!! So.. Take note & ween off (no cold detox!! of these Rxs!! Then be started on an alternate Rx…. I feel so much more redeemed, now I know these things I have been experiencing are “not in my head!!” Like some MDs say!!
After reading all of your comments and seeing that they are all from the female gender and me just finally getting the answer from a Medical specialist just a couple of days ago and me being a 57 year old male, deep down inside myself I already knew the answer. For 30 years I was I Courier I blamed it on the job wearing me out but, maybe a bit of both. Finally it took me down about two years ago and my story is exactly the same. All I got to say is I am glad my children have grown up, I can not even keep up with my own life but trek on, got to say though my wife knew before I did but at least I have the answer to what is causing all the pain.
Another guy here. Some days I have only 1-hour days outside having a meal or 2 which I don’t cook myself. Some days that 1 hour is used to just take a shower.
Very well written article! It takes me 1.5 to 3 hours just to get off the bed in the morning. Just cannot start my day before lunchtime.
Fortunately I retired at end of 2016 when I was 55 years old. I naively thought I’d be a lot better not working. So wrong! Now close to a whole year has passed with me functioning as described above!
Well on my ‘good days’ I have five hours. I wish I could sleep until 10 but I am also a caregiver for parents. Sometimes I think that they are in better shape than I am. Family stress has not helped my health problems either.
I also have SIBO and afraid to take Flagyl because I already have neurological symptoms and heard it can cause nerve problems. I have chest pain and sleep problems on top of the Fibro, which I have had since teen years. In college I had no social life because all my time was spent studying and taking naps. The house is fairly clean, but cluttered, because I simply don’t have enough energy – you get one room clean and then before you can get to the others you have to start all over on that one room! I finally decided that there would be no appointments on Monday and Friday if I can help it. I really need down time.
I have had people checking on parents who have made comments to others on my housekeeping. I feel that many people just don’t take the disease seriously and think that you are just lazy, and that really makes me angry since I consider all the income that I have lost and the tons of events that I wanted to go to but had to bail out. Hard to have a social life with this illness.
I still work full time so I have to be functional in the morning. The mornings are the hardest since sleep is very sporatic. I am happy when I get 2 hours of sleep. I hurt all the time but have to pull through. I am 55 yrs old and hope I can still take care of myself in 5 or 10 years. On the Sat. I am so tired it takes me hours to do the dishes. I end up on the couch for Sat and Sun I manage to get to church and home. Thanks for sharing your comments. It is a big help to know I am not alone in this journey with Fibro.
Darlene, I am 62 and also work full time. Mornings are tough but I am fortunate to have a flexible work schedule. I usually get to work around 9:30 and stay as long as I can function which is around 3 – 4PM. I work from home on some assignments which I am grateful for. My biggest event of the week is grocery shopping. It totally wears me out and causes a lot of pain in my hips and legs. As soon as I found out I had Fibromyalgia last year I acquired two loving Havanese dogs to keep me active. I walk one of them as often as I can. They also give me purpose to keep going. Thank you for sharing your story.
I have learned this year about digestive enzymes. For years I was lactose sensitive. Migraines and sinus infection were regular occurrences. Got rid of dairy problems gone. Later when I was experiencing my journey of fibro diagnosis I started having IBSD symptoms as well as migraines. I found by process of elimination, that gluten was causing these problems. So bye bye gluten. Now, six years later I have been taking digestive enzymes for 6 months. I can have moderate amounts of both with no I’ll effects. I am not going to back to full gluten life but having the option is wonderful. Other family members have found their GI symptoms to be drastically reduced with the enzymes. Not sure if it’s a fibro thing or just seems like it but anything to make life easier without a prescription!! I will take it. Hope this helps someone.
Digestive enzymes worked for my IBS for a while, not so much any more. Recently I began using a different probiotic, and it seems to have made a huge improvement. And, of course, eliminating dairy and wheat and soy for the last 4 years. I’m not celiac or allergic, just sensitive. I can take small amounts infrequently. I’m a bread lover, and I miss crusty French bread and sweet butter even more than pies and cakes. A couple of times a month I allow myself a small piece. So far, no severe ill effects. I often use large Romaine lettuce leaves instead of bread for a “sandwich”. Eating in restaurants is the worst for me. All those temptations and not knowing every ingredient in the food I’m eating is scary.
I have had IBS all my life. I am also Lactose intolerant. Fibromyalgia was diagnosed in 2016. I found through process or elimination I can tolerate sour dough bread. I’m not sure why but I am happy about it. I can also tolerate a very small amount of certain cheese occasionally. Miso soup, bone broth and organic chicken broth make me feel really good. When I am able to splurge I buy the probiotic beverages. I drink a lot of water throughout the day.
Fibro makes me lonely. There comes a time in the day – usually mid afternoon – when the pain is so severe it takes my breath away. All I want to do is tell someone. Pick up the phone and tell a friend, a sibling. I’m not looking for sympathy or advice or even comfort. I just need someone to know how bad it is. But I feel that i’m burdening them and even if they listen they would never be able to understand. Right now its almost 2am and i havent been to bed. Lying down is painful and i cant fall asleep, no matter what drugs i take. Fibro is a lonely journey.
Fibro certainly can be a lonely journey. But you have to share it with someone. You have to talk about it. I don’t talk about it much but sharing on occasion does help. It wouldn’t be a burden unless you were complaining but there’s a major difference between venting and complaining. You just have to talk about it. Maybe find a fibro friend online? I have a couple people who I know that have it. I don’t talk about it often but talking certainly helps. Hope things get better for you
Verdaderamente has descrito perfectamente cómo desde hace tiempo funciona mi vida. Suelo levantarme con una nube en la cabeza, me cuesta seguir las conversaciones y me aturde todo tipo de ruidos.
A esas horas es mejor dedicar un tiempoe para que mi mente y mi cuerpo se pongan de acuerdo para funcionar.
Suelo leer, me gusta mucho y es una afición que tras tantos años con la libro me alivia y me relaja.
A las 15 horas estoy yacansada de todo, necesito dormir, descansar, olvidar….
Hi everyone,
I have recently been diagnosed with Fibro but guess that I have suffered from it for many years.
I have tried a ridiculous amount of medications in my life, many anti-depressants, anxiolytics, pain meds ranging from the over-the-counter meds to very heavy opiod medications, anti-inflammatory medications, medications to prevent migraine and so on.
I started taking CBD oil (Cannabidiol) in the hopes that it might help even just a little bit as I have heard so much great stuff about it.
I am only taking a low dose (2×2 drops a day of a tincture), but am already noticing huge improvements.
I have suffered from headache every day since I was 14 – I am now 28. But I haven’t had a headache (other than a per-menstrual headache) since I started taking the CBD oil over a month ago.
It has also drastically helped my stomach problems. I do admit that each time I increased my dose I had a couple of days of being loose in my tummy but now I am feeling great and off the medications.
Another thing it has helped with is anxiety. I still take an anxiolytic daily but the CBD oil has helped me more than the medication has.
Pain wise I haven’t noticed much change yet, but I am hoping that I will notice some changes once I get up to a higher dose.
So all of you who are mentioning about their tummy troubles, I really recommend trying this oil! It has been a godsend for me and so many others.
If you do get it:
– Make sure it is THC FREE!! The THC is the part of the cannabis plant that makes people high. CBD is the part that helps with pain relief, anxiety, stomach issues, headache, seizures, parkinsons etc.
– Make sure that CBD oil is legal in your country and state
– Don’t go off your other medications until you speak with a doctor / professional
Oh my Gosh! Do you live with me? You explained my day also! When I make Dr appointments it is late morning or early afternoon. My shower doesn’t happen until after 10am. I’m “functional” until 2 or 3 pm then I HAVE to take a nap. Around 5:30 or 6 pm I can get a small spurt of energy sometimes and then I am down at around 9pm. If I happen to go shopping, In my pre Fibro days I LOVED to shop, I am down and out for 2 days at least. I take Low dose Naltrexone it keeps the pain at bay on the “easy” days. Not so much on my “demanding” days. I use the Wal-Mart shop on line and go pick it up for groceries. I love that service! I also love Amazon! LoL!