Don’t you also hate it when, despite knowing how badly you struggle with fatigue, someone who doesn’t is always delighted to tell you, “Yeah, I’m tired too?”
Me too, and I’ll explain why. I fully understand that everyone is entitled to feel tired, it’s a way of life. I also understand that everyone has different levels when it comes to how much tiredness their body can take. However, if you’re a person who is tired because they went to bed two hours before their alarm, or a person who is tired because they were binge-watching “Grey’s Anatomy” for two days solid without going to bed (I salute your dedication by the way, just saying!), then your tiredness level and my tiredness level aren’t really the same now, are they? In my opinion, people who sit there claiming that their tiredness from burning the candle at both ends is the same as tiredness from illness are pretty much insulting every single chronically ill person out there. Obviously with strangers, it’s slightly different as we can’t expect them to carry their crystal balls with them everywhere they go. But, when it comes to our loved ones who know our situations and who know how fatigue affects our minds and bodies, that’s when, personally, it makes it seem that my feelings are less worthy.
So, how is chronic illness tiredness different than “regular tiredness?” Well, seeing as everyone responds differently to fatigue, I will answer that question based on my own personal experience. Tiredness due to my multiple chronic illnesses is a level of fatigue which involves me sitting on the toilet crying my eyes out because I am so tired. It’s when I have hardly been able to move around my house due to lack of energy, yet I’m still sitting on the sofa yawning my head off, and an extreme bout of nausea because I am just so tired. It’s being unable to have a conversation because exhaustion has sucked all of the energy out of my body; therefore opening my mouth would use up a lot of the limited supply of energy I currently have to work with because, you guessed it, I am just so tired.
What are we so tired?.There’s several reasons. We can’t get to sleep cuz insomnia is common. We can’t stay asleep. And because our body is constantly fight with itself trying to deal with daily varying levels of pain and other symptoms of our illnesses.
Unlike healthy people, getting an early night doesn’t fix my problem. Doing less activity doesn’t fix my problem.Getting more sleep at nighttime doesn’t fix my problem (and that’s if I can even get to sleep!).Despite being absolutely mentally and physically exhausted, I can’t sleep, even though I would love to (and nearly do) fall asleep wherever my head lands.It’s debilitating. It’s exhausting. It comes with the territory of multiple chronic illnesses (fibromyalgia, chronic fatigue syndrome, etc.)
So if someone you know with chronic pain, especially moderate to severe chronic pain, and the say that they are tired. They are likely exhausted on, or more more likely off their feet unable to do much We don’t like to complain but when we do, it’s gotta be big.. So please don’t respond with a flippant “Me too!” What you are dealing with is quite possibly very different from what someone with chronic pain is dealing with.
This is part of a series of various Non-Scale Victories. They are things I’ve noticed over the last few years as I’ve lost weight.
At The Gym – Part I
i have recently returned to the Durham YMCA fitness center. Mom & I going two years ago due to COVID and are going back I’m not doing the same activities as I used to for a few reasons.
The schedule and availability of classes is different and limited, a casualty of COVID. My own personal schedule activities has changed – the times I can go and the timing of what is available rarely mesh.
Arriba– The only organized activity is the Arriba class, the one where I step the the music because my coordination sucks. I do some of the step movements with ease cuz they are steps I used to do in my dance classes all those years ago. I rarely do the arm movements cuz I’m usually too focused on the stepping to get it right or even can’t been bothered to figure them out for the most part.
But here’s the thing, I’m able to do the class and not be completely exhausted afterwards. Yes I will feel sore afterwards, but it’s a good sore. Unfortunately, last week even tho I was taking it super easy, I inflamed my fibro even worse. But generally it’s an in improvement.
Swimmimg – Because I’m still waiting for Koolaid to finish healing again, I’m not allow to get him wet with chlorinated water, I can’t go into the pool. But for the one week I was able to go into the pool for a week, I did and was able to walk the lengths of the pool, back and forth. Yes taking breaks at each end, but I am slowly able to do it When I first started doing water, I would only treat water in the deep end of the pool. Given the high amount of fat in my body then, it wasn’t difficult, cuz fat floats. So a definite improvement.
Unfortunately, there is no Aquafit (bouncing to music in the water) that currently fit in my schedule. I hope it opens up soon..
Towels – I am a plus member at the Y and one of the perks is the towel service. When covid shut us down, I was unable to get the larger gym towels fully around my body, to say nothing about the smaller towels. When I returned I found that I could not only wrap the large towels around me with fabric to spare, I was able to do the same with the smaller bath towels! Wow!!
Stairs – To make it to the workout rooms and the upper studio for the yoga classes, I would have to climb a double height staircase. Sometimes, on bad days, I would take the elevator up. On really bad days, I wouldn’t even both going. Those days I could make it up the stairs, it was a massive struggle. I’d commonly stop at the landing and take a breath.
Now, to stop part way up at the landing means I’m having a bad day. But I can now climb the stairs all the way up. I didn’t notice I had done this until several visits in..
Last Thursday & Friday (yes, Good Friday) I had an MRI both mornings. And it was not good.
For those who are unfamiliar with MRI’s, the machine is basically a tube, looking kinda like a doughnut. It has a bed attached to slide the patient in. How you go in & how far in you go, varies depending on what the scan is for. Mine are for my brain so I go in head first, as far in as my elbows . Alternatively, you can go in feet first and I have found out that they have a smaller sleeve kind of version for arms.
My fibro was flaring something fierce and had been since the Sunday prior. I know the MRI machine dors jostle to adjust for the scans, but I’ve never felt like this! Every time the bed was adjusted it was a fast start & a fast stop immediately after. It was very jarring on the body. The fibro pain was excruciating! Add the pain in my left arm from the scar tissue breaking up from my RMT (more coming), and I was almost out for f my mind. And I couldn’t even move my arms because that could cause the scan to blur which could lead to to inconclusive results and a repeat scan.
Add to this situation my claustrophobia, a fear of small spaces. On Thursday, the only thing that has kept me sane and kept me somewhat still, was slow deep breaths through the entire time. Even through each and every shift in the bed. I’m not sure I was able to keep myself motionless sufficently for a clear enough image. On Friday, I was smarter and remembered to take the lorazepam I had so I could quiet my mind while in the machine. That helped keep me more calm and helped relax my muscles. This made my fibro chill out and actually helped decrease the pain. I also was smart and lay my arms in a more relaxed and comfortable position before going in. The movement of the bed adjusting was still very jarring on the body, but with the breathing I was able to cope better.
When I got home, I went straight to bed to catch up on sleep and the lorazepam was really starting to knocking me out.
This is part of a series of various Non-Scale Victories. They are things I’ve noticed over the last few years as I’ve lost weight
Flexibility – Now, part of this may have to do with exercise as well as not having as much chubb (fat tissue) blocking me from movement.
Squating – I have noticed improvement in this area as my weight has dropped. But I was at the rifle range late last month with the Boy Scouts. (Let me know if you want more info on this) When I went to post my target, with is pinned on a board right at floor level, I squatted down. Not just partly, and then bent over. I was able to squat all the way down where my tush was just off the floor. Even more impressive, I was able to stand back up from said squat with no help whatsoever. Last summer, I’d been able to get almost that low, but had trouble getting back up. That day at the rifle range, absolutely not! The freedom of movement is wonderful even if it hurts.
Falls – I am reminded of another situation. I was at Long Sault Conservation area shortly before COVID hit & shut down the world. I was still pretty heavy then. I was there with my friend Jen & her son as well as my sister & her kids. It was March and the ground was still icey. My balance bites at the best of times, so of course despite my good winter boots, I slipped and fell. Firstly, instead of a gasp & a moan and hurting myself, I started to laugh. My sister, so used to me being so big, uncoordinated and non- functional, she unconsciously rushed over to help me. Two years prior, I probably would have needed the help, but I told her I was ok, and I was already halfway back up by the time she got to me. She was surprised I was able to move well enough on my own and to be honest so was I. But I was, because I was lighter and could move more easily than I had.
Did I hurt myself? Good God, yes. I have fibro, so that was not unexpected, but I didn’t feel it until later after I got home.
Touching my toes – Can I touch my toes? No, I still can not bend that far and don’t know if I ever will.. I can however, because there alot less tummy in the way, reach significantly further than before. With straight legs, I can touch my shins about 3 inches above my ankles. At maximum weight I’m not sure I could have bent over and touched my knees.
I know you’re trying to be helpful but your suggestions of yoga or CBD or massage or med XYZ, but I’ve tried it all already..
Medications.
In my case, I have tried all the meds. The only one I haven’t tried is one that’s available in the States but not in approved for use here in Canada. It’s called Sabella.. Specific medications for fibro include lyrica and gabapentin did not help and in fact, the gabapentin made me significantly worse – not good
I’ve been on any number of narcotic medications, starting at 20 Tylenol 3’s a month (that was a joke, way too insignificant) to high dosages of codeine contin & Fentanyl.. Fortunately, those were not at the same time.
I’ve also been on several muscle relaxing medications. Unfortunately, the one that works the absolute best is not covered my government benefits, but the one that is covered is adequate unlike many others.
i have been on anti-inflammatoriez for many many years due to Endo then the arthritis. Unfortunately, it seems to have started causing increased bruising in the last year or longer. As a result, my GP has taken me off my regular double daily dose. I now take an otc anti-inflammatory “as needed. “
I have actually been on various forms of medical marijuana and just as I’m finding the perfect balance to help, I start having issues, problems that might be due to cannabis products. We are still trying to figure out the cause because even tho I’m off *all* marijuana products, synthetics oils and otherwise, I’m still having regular issues. So the docs got no idea what’s going on. Read more here.
Exercise!
You’re kidding me, right? Do you know how hard it is to exercise when your body is screaming at you? Even Yoga.. Or swimming.. Or walking.. Even these simple every day activities, when you have severe Fibromyalgia can be unbelievably difficult. While it can help some it does impact others in a negative way, deteriorating their health.. I am lucky. I made a decision 10 years ago when I hit 303lbs on the scale at my doctor’s office. So I did start the long and painful, excruciating process of doing a smidge more activity, very slowly increasing what I was doing.
So yes, now I can go swimming.. well, walk in the pool, lol.. Before COVID I could participate in an aquafit class, but sometimes no more than bobbing in the water but I made the effort to be there.
Yes I can walk further, but that happened with great encouragement from my sister. Over the last six years, we would get together weekly to walk. On some days I can’t walk very far, but I try. This encouragement has led us to talking and we have become very good friends now. An excellent side bonus!
Yoga can still be very painful, depending on the speed, the instructor, the modifications, the positions we use and the flows (God I hate flows). I do have favourite positions like bridge & pidgeon that surprise people. But it took me 10 years to get to this point and it can still very much hurt.
Was at the gym, stepping around in an Arriba class earlier this week and crashed out that night… Barely made it to the time I take my night meds. Even took extra early pain meds to help dampen the pain so I could sleep.
The advantage of me having the gym membership at my local YMCA is the plus membership I fork out the extra for the plus membership because it includes additional99lounge, steam room & the infamous hot tub. The hot tub is my life saver. Can’t wait for my tat to finish healing so I can send all the way in to my neck
Diet.
These include gluten free, Keto, vegetarian, vegan, anti-inflammatory, Noom, high protein, Mediterranean, Weight watchers, diabetic, South Beach, intermittent fasting, paleo, raw foods, Aktins, etc… While some of these would works for some, none of these really helped me or could help me. Between complexity, my will power (or lack thereof), cravings and food sensitivities, none of these actually worked for me. My choice of “diet” is moderation and avoiding a lot of prepackaged foods. The closest to this would probably be the weight watchers program but I found their point system to be complicated especially with the cognitive issues with my Fibro. This adaptation has also helped me lose weight. So I still do drink Coke, probably still too much, but significantly less. I’ve almost 100% restricted out the xanthan gum, guar gum and carrageenan additives as they typically cause my IBS to flare which would start putting me in starvation mode, which makes maintaining, let alone losing weight even more difficult. Not to mention get some of these diets require me to eat foods with these additives in them.
I do treat myself every once in a while with a bowl of sorbet. Very infrequent use of these chemicals it is permitted because my body can tolerate them in very very small doses.
Alternative treatments
We’re talking massage, acupuncture, physio, osteopathy, chiro, etc. Physiotherapy does not really help the fibro other than adjusting exercises that could be beneficial to help increase strength, endurance or flexibility. In many cases this does not improve the pain due to fiibro in patients.
While chiropractic medicine helps some with fibro, it actually made my situation significantly worse.
Osteopath does help but it mostly treats my other conditions like post concussion syndrome, migraines or endometriosis and general health and wellness. Does not help fibromyalgia specifically that I know of.
Acupuncture does absolutely nothing for me or any of my medical conditions. I have tried it a number of occasions and hasn’t worked with any of the practitioners. One lady treated my Endo & gave me migraines. Any further attempts for any other issues have resulted in absolutely not relief
Massage can wonderful. If you get an appropriate RMT who understands fibromyalgia and will listen to you & adjust when you say “Ow!” it can help. Unfortunately it also tends to be very short-term
Injections.
For 15 years now, give or take, I have been getting injections of a medication called Marcaine which is a sibling medication to lidocaine. These I get with my pain physician who was initially in Scarborough and is now in Oshawa. These shots have helped over the years for anywhere between 4 days and 4+ weeks depending on the level of my pain
In the winter I also get epidurals up to three times each winter depending on my pain levels at that time. This tends to treat my osteoarthritis in my lower back, not the fibro pain. In doing that however, it reduces the OA pain, making the fibro pain more manageable.
lidocaine infusion. This is the one last treatment I know of. This is when they attach an IV and add lidocaine to your blood system. This is my next course of action for treatment. I have an ECG scheduled for next week so that I can access this treatment. Once it’s been verified that my heart is ok, I can and will book the treatment. I will let you know how it went.
Thank You, But..
Thank you for your concern for me and your helpful intentions, I’ve been dealing with this a long. Thank you for your pearls of wisdom persistent unsolicited advice is actually inconsiderate & thoughtless. I *do* know my body & I do know what works for me. It comes across to those of use dealing with these issues like we don’t know anything about my fibro and that you know more than me & my doctor. Honestly, in most cases, I do know more than my doctor. So please stop making suggestions cuz what worked for your friend’s cousin, Sally, I have already tried. or that your Dad’s friend’s daughter was cured, because it can’t be. I don’t need anyone telling me how other people’s treatment going to work for me because her fibro is not my fibro.
This is part of a series of various Non-Scale Victories. They are things I’ve noticed over the last few years as I’ve lost weight
Crossing My Legs
Crossing ones legs – I know this is something most people take for granted, but when you are bigger, it becomes more & more difficult to cross your legs at the knee. Now, I may have been able to do this for a while, but late last year, I’d sat down to talk with my mom. We had been speaking for a while before I noticed I had crossed my right leg over my left, at the knee. Not only that, but I had been sitting there, in that position, comfortably, for quite a while. Possibly up to a half hour.
I had looked down & just stopped talking. My mom asked what was wrong. I just looked over at her, grinning & said “I’m crossing my legs.” It took her a minute to understand the significance, but when she did, she was so happy for me. You see, I had not been able to do that at all at my larger weight. All I’d been able to do, in a long time, over 20 years, was to cross my legs at my ankles only. Even the last time I lost weight down to about 220, I still could not do that, crossing my legs at the knee.
Additionally, something I’ve not been able to do is to sit on my couch with my legs crossed below me. I don’t even remember when I’d ever been able to do that. I’d been envious of people who have been able to snuggle up like that.
I recently upgraded to a proper sized love seat, as the previous one I’d inherited was not as deep and not as wide so I hadn’t even bothered to try. With my new love seat, the first time I sat in it while talking to someone on my computer, I cuddled up, without thinking, bringing my legs up onto the couch, crossing my legs underneath me and sat there chatting. I only realized maybe 10 or 15 minutes into the conversation how I was sitting and sitting very comfortably.
Allodynia is a type of pain that many of us with Fibromyalgia have. It is basically a extreme sensitively to touch. People with this can have extraordinary pain from simple every day contact like combing one’s hair.
My Allodynia
I don’t know if my situation is unique, but mine seems come and go, and it can vary depending on the amount of pressure.
Some days I’m golden. I have zero issues. Other days, I will shed a hair from my head and when it falls on to my unsuspecting arm I am in excruciating pain. Other times I with just come in light contact with something and the pain is agonizing, but I can have firm contact like a hug and there’s nothing. I don’t get it.
There appears to be no rhyme or reason as to which circumstances will crop up on any given day. Fortunately, it does not change from one to another on the fly. I’m more likely to switch from one to another on different days. So on one day I’m good, but the next day it hurts to brush my hair or even my teeth (yes, it can impact my gums).
I have found that the most noticable instigator of this type of pain is from a hair touching my skin, either stopping, caught on hard or leg hair, or feeling it as the single hair strand bounces on my skin as it falls. Because of this, I tend to brush or comb my hair fairly frequently. My sister was surprised when I mentioned that I will brush my hair several times a day, vs the once or twice she brushes her hair. I also tend to pull my hair back or up to prevent loose hairs from falling.
The other way it frequently hurts is a casual touch. A light hand on the shoulder. Someone brushing by me. My mom no longer touches me because of the number of times I have flinched unless I have asked her to, like rubbing A535 into my back. My sister is the same. My neices & nephew tend to forget. My intimate relationships don’t seem to be impacted as much cuz those touches tend to be more firm.
The hardest part is incidental touches by others who don’t know me as well. I am a leader in scouting. I’ve had youth come and touch my shoulder from behind so I’m in prepared, or a hug from a child who forgets they aren’t allowed to touch without consent.
There are also times when I know to expect contact. A perfect example is another scouting situation. As the ‘head’ leader (usually called Akela, but the Scouts named me Koolaid before I went to Cubs) I do opening & closing. This includes the challenge. I yell “Pack! .. Pack Pack Pack!” and the youth come running to challenge me, as I am the head wolf (hence wolf cubs). They come to a tight circle around me, but every meeting someone will run too far or have a hand out or jostle with another youth & contact is made Because I know it’s likely coming from somewhere, I can prepare for it and it’s less of an issue.
Lately, it doesn’t seem to be as much of an issue as it has been in the past. I don’t know why. Is it the improvement in my overall health? Is it my weight-loss? Is it than my activity level has changed? Is it that my pain levels had dropped? Is it a change in medications? I have no clue.
if you experience this condition, how does it impact you?
So, this is the start of my series of Non-Scale Victories. Every week I’ll be posting some of the things I have noticed that have changed in a good way.
Clothing
I finally bought brand new clothing a few weeks ago.. I was wearing my size 16 pants & I knew they were too big. Since I didn’t know my size anymore I went to Walmart. I grabbed a bunch of 14’s. Tried on the first pair… & TOO BIG!! I grabbed a bunch of 12s & they fit, except the Sophia boyfriend cut pants – SIZE 10!!!!
Pictures of me from the change room.. All size 13, except the one pair of size 10 light blue boyfriend pants.
I am.now a size 12 – the small side of Large. My bathing suits that I’m going to have to buy will likely be a size 10!
I also can fit into clothing from high school. While I don’t have alot of stuff from back then, I do have memorabilia clothing. I have swag from my field hockey trip to England, my Manchester United t-shirt that I got from my dad and most of my swag from competing in the Canada Games in 1991. In the images below, the girl on the left is me, age 17 in March of 1991 shortly before I left for PEI. I was only able to wear the jacket, and the rest for that matter for the rest of the winter. The chick on the right, it’s me, less than a month ago in the exact same jacket. It fits me better now than it did then!
Thanks again to my friend David for replacing the exact same jacket in the exact same size for me..
Canada Games, Team Ontario 1991. Left: March 1991. Right: March 2021.
Fibromyalgia 
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