Rest or Determination

Tuffy, sleeping too much and laying in bed too long can cause more pain and fatigue with fibro. Many think if they are tired, they need more sleep but that’s not necessarily true. Sure, if you’ve pulled a few all-nighters you would need to sleep but most everyone needs only 7-8 hours of sleep a night. I read an article a few months ago that actually said 7 hours was better for us and for our health! So laying in bed and sleeping a lot could be making you more fatigued!

I am on a sleep schedule. I go to bed around the same time and get up at the same time every day. Bedtime for me is between 10 and 11 PM and I get up at 7 AM. I set my alarm to get up but always wake up at 6:50 AM because my body is accustomed to the sleep schedule. So, that gives me 8-9 hours in bed BUT I wake up a couple of times to use the bathroom at night so when that is added plus the time to fall back asleep, I get 7-8 hours a night.

I also go to bed with the TV on. It relaxes me and I’m usually asleep in about fifteen minutes. It makes a great night light when I get up at night too. If you have a spouse, turn the volume down and the closed captioning on. Trust me...reading the text will put you to sleep quickly. I have to do this because I can’t hear well. Even when I did a lot of traveling, my roommates were never bothered by the TV since the volume was turned off. They slept fine and so did I.

Here is what theHarvard Medical School says about too much sleep.

https://www.health.harvard.edu/healthbeat/are-you-tired-from-too-much-sleep

So do try the sleep schedule and stick with it. It does work but your body has to get used to it.

Do you take Lyrica and baclofen every day? It sounds like you only take it when you are in a flare. I think Lyrica is supposed to be taken every day and I’m not sure about Baclofen. Check your medicine labels to see how you are supposed to be taking these things. Both of these medications can cause sleepiness! Then, if you only take them occasionally, your body isn’t used to them and they could be causing the extreme fatigue. If you are taking them as directed, you need to talk to your doctor about switching medications. Being tired all of the time and not being able to function is no way to enjoy your life!

I take over the counter things and they have helped me and I can control what I take by how I feel. I do like that. I use ibuprofen with food, Tylenol, Vitamin D3, magnesium malate, and a prescription muscle relaxer called Robaxin (methocarbamol) that had made a significant difference in my pain. I only need a fraction of what the doctor prescribed for me so I don’t get sleepy or groggy from them.

I hope some of this helps you. Persistence just might pay off for you.

Sherrine

This sounds so similar to my daily dilemma! The golden question: push ourselves to complete exhaustion to be a functional adult, or be kind to ourselves and always listen to our body that says "let me rest!"

Some days, I push through the fatigue and soreness and accomplish a lot. Many days, I HAVE to at least try...I'm an ICU nurse and work busy 13 hour shifts that require both mental and physical endurance. I do take adderall intermittently to help me with attention and wakefulness which helps some days, and others not at all. I had worked night shift (7pm-7:30am) for many years, which gave me another excuse to sleep days away, sometime 48hrs almost straight through. I chose night shift as it allowed me to mask my fatigue and fog, as most night RNs are of course tired, and take 5 minute cat naps here and there. Now, I have gone to day shift in hope that I can feel better but nearly a year later, here I am just as drained as ever. I think I even functioned BETTER being awake for 24+ multiple days a week.

On days that I am off, I try more often to push myself to get up and get moving, even though I feel like tinman who needs to oil up. I often find myself completely drained after a few easy chores, like washing dishes and folding laundry, or even just grocery shopping. Then I'm doubled over from back and neck pain. I have more recently avoided anything I don't 'have' to do such as social engagements, because I'd rather rest. I still sleep so much--my child with special needs has even asked me if Im dying! Unfortunately, I think this cycle has made me feel worse overall...more withdrawn and tired, isolated, and uber depressed because I feel so lazy and unaccomplished. No clue how I once did heavy lifting and HIIT workouts at the gym 5x a week.

Ive tried the whole sleep hygiene thing and have kept a log. I have developed a routine (limit screen time early, hot sleepy tea, dark cool room and supplements) and stick to a bed time the best I can. Yet, I still cant seem to get up in the morning, even when I have to. Ive set up lights on smart plugs to make my room super bright before my alarm goes off. I'm even on the verge of being terminated from my job for oversleeping and being late, and my kids miss the bus at least once a week. I have personally found that I feel best when I get either 6 or 12 hours of sleep--still exhausted, but tolerable.

Here I have written this lengthy response with no advice, but moreso to empathize--you are not alone. I'm guessing the best thing to do here is to just keep trying until something feels right. I do suggest keeping a short log to be able to reflect on data, playing around with nap lengths (geez, I wish I could just nap for 20 minutes, but it almost always turns into 4+ hours), and different med/supplement combos.

I currently take magnesium and relora (an herb) at night that helps me to relax without residual medication induced morning grogginess. After swearing off all traditional pharm meds for a while, I'm giving things another chance. I've decided to try out Fluoxetine in the morning, adderall IR midday, and low dose amitriptyline a few hours before bed....and pushing myself to do some sort of light exercise daily.

Hopefully, we can find the sweet spot routine or a fountain of endless energy soon. Wishing you the best!

Sincerely,
"35 going on 95"

Thanks for commiserating. Sometimes it helps more than you would think just to know “it’s not ME” personally.....and I’m just weak 😥...funny what can seep through the caverns of this the mind when one is a wits end. Especially considering that anybody who deals with chronic illness are still functions and holds a life together are the definition of strength.
Bottom line Sjogren’s disrupts sleep patterns as does the pain it brings. I’m with you though it would be nice to figure out the combination to our locks.

After everything I woke up with my regular stiff neck and spine and something new was added!
A bladder infection! Gees!! It happens when I’m flaring all the time too. If I’m real lucky the antibiotic will send a nice case of yeast....Ahhh a day in the life.
Boy it must have been hard to hear such a question from your little one, and boy I hear you about the social life thing....mine has diminished lately to going grocery shopping...what’s sad is I am okay with that.LOL! There is nothing worse than going to a gathering for fun and being so comatose that you can’t keep up with the conversation. Lord forbid a glass of wine and I forget my name! Too funny.🤣 Might as well laugh right?
Thanks for the post it helps allot. Take good care. Tuffymason

Great suggestion, Chotti! Actually, whenever you take a course of antibiotics, it’s good to take probiotics afterwards to help build up the good bacteria that the antibiotics killed.

Sherrine