Hi. My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!
I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
Oh, yeah, I can make you feel anxious or depressed, too.
If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me.
I’m rolling on the floor, laughing. Just try.
You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ♥️
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.
I went to Lakeridge Health to get help on Friday. But for the most part I’ve been screwed.
It’s Sunday & other than a 15-20 minute chat with the doc in the ER, I’ve seen no physician. The on call shrink who prescribed my meds has completely screwed me over I missed THREE doses of my antidepressant – which given that I’m here for mental health is excruciatingly bad. Finally back on as of this morning I was given a muscle relaxer & a Tylenol three on Friday in the ex for my fibro and that’s it.. nothing since.. but she did prescribed a Parkinson’s med for muscle spasms – huh? So my pain is skyrocketing… & It’s not freaking muscle spasms. & Have not been given any arthrotec (antiinflammatory) that I also take.. You should see my ankle from hurting it almost 2 weeks ago.. it’s exploded cuz I’m not treating the swelling
I have finally gotten the last nurse on the last shift to finally reach out to the doc to get something prescribed & his replacement is actually being more diligent & she has followed up twice now..
Then add to that my sleep.. while long, there was very little deep or REM sleep, so not much healing sleep here either
But God. This is the worst experience. Worse than being sent back home with my ex after a major OD (my ex was why I’d OD’d).
I dont know if I’m going to be able to get my shopping done for Christmas, let alone my baking.
This is supposed to be helping me It’s not. It’s making me worse
Yesterday was the perfect storm. Everything conspired against me.
Poor Sleep. According to my fitbit, for the last several weeks, I’ve been getting usually between 4 & 6 hours of sleep a night, average rating poor-fair. There’s the occasional longer, better sleep in there, but not often..
Forgotten Medication. When I left for the cottage early this morning, I forgot all my meds at home. Admittedly I didn’t need them all today, but there are certain ones that I do have to take at certain times for them to be effective. Unfortunately, those got left at home. I did have limited or weaker alternatives which I suppose is better than nothing.
Emotional Stress. I am currently having problems with my current relationship. I’m not sure if it’s something I can handle and accept or not, so there’s alot going on there..
Poor Diet. Due to the aforementioned stress, I haven’t been eating.. I haven’t been eating well & I haven’t been eating much. Neither is good, both is worse.
Activity. Spent the day in bed.. with my boyfriend, not sleeping. While this is usually a good thing, due to stress, I was unable to truely relax and enjoy it. So I was getting the workout without all the longer term benefits
Physical Stress. After I’d started going down hill, I had a horrible drive home. What would normally be a nice relaxing 1½ hour drive home from the cottage turned into a 3+hour nightmare. Between accidents causing an entire highway to shut down for over 14hrs, excessive detours, multiple accidents on said detours, snow.. The body begins to tense up more & more & more.. and with me being in the car I wasn’t able to like stretch or anything creating more physical stress
For the first time in over 3 years, my pain turned to a solid 8/10.
After 2+ hours, 4 Tylenol3, 4 muscle relaxers, an anti-inflammatory, my CBD oil, prescription edibles, and a backrub with A535.. the edge started to come off, but I also started feeling the effects of over medication too..
For those not familiar with the story. See Below. It was also made into a movie in ’02.
The princess slept on a pile of twenty mattresses and twenty feather beds and still did not sleep well due to the small pee in the middle of the bed under all those mattresses .
I am convinced that the princess in this story had some sort of chronic illness.. From the description, she could have any of the following: Ehlers-Danlos Syndrome, Fibromyalgia, CFS/ME, Rheumatoid or Osteo- Arthritis, Allodynia, Complex Regional Pain Syndrome, Sensory Processing Disorder (In conjunction with or due these other conditions.
The American National Library of Medicine says “Possibly the princess in Hans Christian Andersen’s ‘The Princess and the Pea’ suffered from FMS since chronic sleep disturbances are typical in FMS. These sleep disturbances have been attributed to a dysfunction in the systems regulating sleep and wakefulness resulting in loss of deep sleep. ” That can be said about the other conditions I mentioned as well..
If you do a search of “The Princess and the Pea, chronic illness”, you will get a long list of articles believing that the lass in the story wasn’t just ‘sensitive’, but had a chronic illness. While all of the conditions I mentioned above, it seems Fibromyalgia to be the most common conspiracy theory..
What do you think? Does she have a chronic illness? Which one?
The Story – The Princess and the Pea
A pile of 40 mattresses with a pra under the bottom one
Once upon a time, there was a prince who lived in a wealthy kingdom. When he had reached the proper age, his mother, the queen, decided the time was right for her son to find a bride.
The prince, however was determined not to marry just any girl, but that his future wife should be a “real” princess. So he traveled the world and searched in all the kingdoms and met with all the princesses, but he still wasn’t satisfied.
One evening there brewed a terrible storm, with thunder, lightning, and rain. It was really frightful! In the midst of it all came a knock at the town gate. The old king went to open it.Who should be standing outside but a young lass, and what a sight she was in all that rain and wind. Water streamed from her hair down her clothes into her shoes, and ran out in the heals.
She claimed to be a real Princess. Although no one believed her, she was invited in to stay for the night.
The queen decided to test the young girl’s claim of nobility – without saying a word, the queen went to the bedroom stripped back the bedclothes, and put a single pea in the bottom of the bed. The queen then took 20 mattresses and stacked them on top of the pea and took 20 eiderdown feather beds and piled them on the mattresses. Up on top of all these the princess was to spend the night.
The next morning when the girl woke up, the queen asked how she slept. “Oh very poorly!” she said. “I scarcely closed my eyes all night. Heaven only knows what was in the bed, but I was lying on something hard, and now I am black and blue all over my body. It’s horrible!”“
They saw at once that she must be a real princess when she had felt the pea through twenty mattresses and twenty feather beds. Nobody but a real princess could have such a delicate skin.So the prince took her to be his wife, for now he was sure that he had found a real princess
How much sleep do you really need? In general, most adults need about 7 hours of sleep per night. Children and adolescents need even more – around 9 or 10 hours per night. However, the amount of sleep people need varies widely, ranging from 5 to 10 hours per night. The important thing is to find out how much sleep you need to stay healthy and alert, and then try to get this amount of sleep each night.
People like me, with fibromyalgia have this problem. We require more sleep & rest than the average person.
At my worst I was in bed by midnight, with several extended & cognitively aware wakeup. I’d wake at noon to my alarm. I’d have a nap as well between 1 & 4 hours. I was still exhausted & non-functional.. Currently I am getting about 6ish actual hours of sleep at night as per my fitbit. I generally wake on my own, but use a alarm of I need to be somewhere at a specific time. I, generally, no longer take naps.
I am still exhausted, but because my health is better overall, I am… functional.
The right amount of sleep is the amount that lets you wake up feeling refreshed and well. You may be able to function on the amount of sleep you are getting now, but it still may not be enough for you to reach your full potential. Here’s how to tell if you’re not getting enough sleep:
You need an alarm clock to wake up.
You sleep longer and better on weekends.
You have trouble getting out of bed in the morning.
You feel tired during the day.
You have bags or dark circles under your eyes.
You doze off while sitting in a public place, such as a movie theatre or meeting.
You get drowsy while driving.
You have trouble concentrating.
You have early morning headaches.
I’m sure many fibromites have several of these signs of poor sleep. I laugh at the suggestion of waking feeling refreshed and well – Doesn’t happen much for us..
These are the issues *I* experience:
I still need an alarm clock on occassion, for something important
I have trouble getting out of bed feeling sluggish & pain spikes just after I wake.
I frequently feel tired during the day.
I’ve bags and dark circles under my eyes.
I don’t usually doze off while sitting in a public place but it has happened.
I have only been excessive drowsy while driving three times.
I have trouble concentrating, but this could be fibro fog.
Like the last point, all of these signs could be caused by Fibromyalgia or it could be caused by poor sleep. It is very difficult to differentiate as signs & symptoms are very similar as are the forms of treatment are also very similar.
If you notice any of these signs, you may not be getting enough sleep. Try to gradually increase the amount of sleep you get each night until you find the right amount – you’ll know that you’ve got it when these signs start to go away. If you haven’t been getting enough sleep for a long time, it may take a while to recover. If you’ve tried everything and still have trouble getting a good night’s sleep, talk to your doctor. You may have a sleep disorder.
I agree, if this is a persistent & reoccuring problem, it might be a good idea to see your GP & get a sleep study done to see what’s up in your actual sleep.. I’ll try & post about my sleep study experiences.
Yes, I can go camping with Fibro. It borders on Glamping, but I’m still in the outdoors, in my tent & cooking out on a stove. And yes, I have gone camping twice this summer, so far with at least one more weekend planned
I have had to make many modifications to how I can camp.
I am no longer able to go backpacking. I would not be able to handle the weight I’d have to carry mile after mile.. In my teens, I had gone up to the back country of Algonquin, spending several days out in the wilds with friends. That’s not happening anymore. The mind is willing, but the body’s not even gonna consider it! Lol.
I have had to upgrade from a 2-person hiking tent to a a 4-person, 3-season tent. I can no longer sleep on the ground, on thin mats, bubble pads or wood flooring like at Camp Adelaide. I now have a double high queen size air mattress that I use. I have a fitted sheet on it & depending on the weather 1-2 sleeping bags & my Lilly blanket. I also have a pillow that I use exclusively for camping.
My camp setup for virtual Cuboree
I have borrowed a camp stove from one of my cub packs (yes, the pack knows). It connects to the smaller green propane tanks, not a big 20lber. It is not one that requires you to prime it, cuz I find that one difficult. But also does use the huge tanks either so I don’t have to move that either. In addition I recently purchased my own stove used. I still need to clean it & test it tho.
I can light a propane lantern both on the green tanks & the big white ones. I’m lazy & cheap so I only use a small battery-operated portable one & my handy dandy flashlight. Blessed with good night sight, I don’t usually need a light source to sneak off to the bathroom at 2 in the morning.
I recently purchased an small indoor/outdoor table to use camping & at in-person & outdoor cub events. I am not sitting on the ground to cook or prep. With COVID, we can not share the picnic table with others right now, so I need my own table.
As some of y’all know, I have a long sleep cycle, and I’m sure your curious how I do that camping. Easy: ear plugs, & sleep mask. With my Cubs, I have our SiTs do breakfast, but otherwise, I suck it up. I know I will crash out during the week, but it is worth it.
My pink sleep mask (I have 3) & a pair is standard orange ear plugs.
To sit, I bring lawn chairs. My butt is too big & my balance to horrible to be able to get in an actual camp chair, handmade or store bought. Add to the fact that they are barely off the ground, with some I’d have to get on the ground to get up! Lol
This is what my current campfire chair looks like, but with thicker wood .. Made it in Rover Scouts.
Swimming? Heaven! The water is a blessing. Yes, not everywhere has water, but I camp at my bff’s cottage so there’s water there. Our cottage is also on a lake.. I enjoy the cool lake as it’s refreshing, especially on warm day.
I make sure I take all my medications, as prescribed at the appropriate time. I also bring sufficient extra medications, especially the PRN meds cuz you never know when you’ll need them. In addition to the regular meds I also bring my A535 & the Voltaran cuz again, you never know.
Are there other aspects of camping that I’m missing? Let me know & I will tell you how I deal with them!
I did some exercise before bed. Normally a little exercise drains me & nixes my RLS.. Normally. Not so last night. It backfired.
I couldn’t sleep for a few reasons:
My Restless Leggs Syndrome kicked in despite the exercise. I had to take 1½ Trazadone to get them to settle..
My mind could not shut off..Kept thinking about stuff, like my cub scouts and my plans for the weekend. I just kept going over stuff in my head – despite trying 3 different sleep meditations.
The exercise reacted like it used to – negatively. In the last few years, basic exercise has not been the hindrance it was for the 10+ years prior. So imagine my surprise when in snuggling into bed & my leggs (in addition to RLS) start to hurt.. it was not good. I’ve not had this reaction (other than overdoing it) is several years.
No, the want for immediate gratification and instant response was not for sleep. In this case, it was for my pain meds to work. I had to run 3 courses of meds. The first one the regular evening maintenance pain regime. The second was more Tylenol about an hour later. After still not getting additional relief from the additional meds, I bumped it up, 2 more Tylenol, 2 Robax which includes another, but different, muscle relaxant & anti-inflammatory.
On Wednesday night I was having problems getting to sleep, big problems. I have Restless Leg Syndrome and when it keeps me up, I take a medication which usually relaxes my body enough to sleep.
Restless Leggs keep moving and can’t stop, making you unable to sleep.
Not this night. No way. I first noticed the issue in my right arm, oddly enough… (Yes. You can get restless leg syndrome in your arms but it’s not the most common place) Then my left leg I noticed was twitching and minutes later my right leg followed suit. All of these are becoming highly hyper-stimulated so much so that normally only one limb that sensitive I know is a significant problem.. But I had three.. I finally noticed my left arm tacked on for the ride, but was fairly ‘mild’ comparatively speaking.
After waiting a half an hour for the meds to kick in, and they didn’t, I knew I’d have to take drastic steps because there was absolutely no way I was going to be able to sleep with three very very restless limbs and one mildly restless arm.
What do I do? I jump on the treadmill. Yes, the RLS can be hugely painful but it wasn’t too bad, achey but mostly just constant moving.. Normally with mild RLS I only have to walk for 5 minutes but this wasn’t mild. Also, my Fitbit doesn’t record exercise until you hit 15 minutes.. lol.. So I was on the treadmill for 20 minutes.. had another quick shower and hopped into bed nice and relaxed.
Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.
Every morning is a tough morning.
I can sleep all day and still feel like I just ran a marathon.
If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
When i’m tired, let me sleep.
Certain foods make me flare up, For me that’s items like Ice cream breaded food products (like fish sticks or chicken fingers), mayo & salad dressing, KD, etc.. Some I know why, others no clue.
When I’m in a flare, leave me alone in a dark room but please check in, even if I don’t answer. It makes me feel cared for & loved .If I am flaring and I am responding, I’m likely asking for a ride to the ER.
Yes, diet matters, but in flare mode, all bets are off.
Yes, my face is swollen. No, I didn’t gain 5 pounds overnight… Well I could have gained, but not on my face.. So, Yes, that is a tell that I am in a flare.
I have many different sizes of clothes in my closet to accommodate flare vs. non-flare days. I currently have clothing from a medium ( very generous medium) to 3x.. I’ve lost weight, so likely only a few items & eventually they will go too.
Fibro Fog sucks. Ya know when you get absent-minded every once in a while? Misplaced your keys? Misread something? Forgot to water the plants? That’s Brain or Fibro Fog. While it happens to everyone at some point, it not the norm. For people with Fibromyalgia this is the norm. Every day. I have even lost my train of thought, mid-sentance. It happens enough that those close to me don’t bat an eyelash when it happens. Some even see it happening & will remind me of what I was saying. The worst, is fogging out when I drive & I love to drive, but have to be super careful to make sure I am clear minded.
Ask before you touch. Some days, I can barely tolerate the feel of clothing or even my hair on my skin. When I’m ok, give gentle hugs please — my skin & muscles may still be tender. But if I give you a bear hug, you can give me one back!
Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
Allergies play havoc on my body. Scented products like perfumes & body products are typical culprits Sometimes I don’t even know I’m allergic until I experience it, So it’s a bit of Russian Roulette when I go into public because I can’t control what scents other people wear. Food allergies/sensitivities do not make life any easier either, especially when eating out.
I am a human barometer ( there’s a post around about that.. I can typically tell it’s gonna be too cold, too wet, too hot.
Yes, i am on medications, sometimes even alot of them. I have a decent relationship with the pharmacy staff, and I know exactly what all my medications are, the dosage, and why I’m on it & how it helps.
To me, car rides are joy rides cuz I really love to drive. I need to stop every hour or two to keep my legs from going numb or seizing up. It, for me, is so worth it! But so many with fibro feel differently than I do & equate it to a highly painful roller coaster ride.
Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
I can get moody. You would be too if you were in pain all the time, be patient with me.
Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
If I cancel my plans with you, don’t be mad.. Remember, I made plans with you, because you are important to me. I am trying and obviously want to hang out with you, so please keep any nasty commentator yourself as I already feel guilty.
Your friend with Fibro that says they have no pain doesn’t make me feel any better. Plus if they have no pain, they may not have fibro cuz *all* Fibromites have *some* level of pain at *all* times Alternatively they could simply lying either about having fibro or about being totally pain-free. Also, just cuz someone says they are “Good” that’s does not mean pain-free
“You should exercise.” ROTFLMAO. Have you considered going to the gym while you are in the middle of the flu with body-wide aches & pain, fatigue? Didn’t think so, so how can you expect me to when I have body-wide aches & pain and fatigue? Yes, I do exercise, but I’m not a hypocrite. Do you know how long it took from me to go from bobbing in the water during aquafit to get to my current level of exercise? Years!! It helps, that I have lost weight. Before you use me as an example of of someone with fibro who is ‘fit’, remember that I started my journey to become healthier & to increase my fitness level in the winter of 2012, almost 9 years ago. And I would not consider myself ‘fit’
Going to the doctor makes me sad & sometimes overwhelmed— it’s a reminder of my condition. And it doesn’t help that I have at minimum a half dozen medical appointments each month – GP, Pain Doc, RMT, Physio/Osteo therapy, Gyn, Neuro, Dental, Psych, mental health support groups, and one offs for tests like bloodwork, ultrasound, x-ray, MRI or CT.
There are zero no-pain days, but my low-pain days are my happy days. So if I’m looking good and acting good and I’m social, I’m better, right? No, just a good *low* pain day. Fibromyalgia is chronic & will not go away
Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful. Unfortunately, some of that downtime does not even permit blog writing because the pain or fatigue is*too* intense, so I have missed posts.
Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
if i am being a dick about my health, you will not change my mind. I have to figure it out myself. For those in my life who put up with that for years, I am sorry.
Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
Yes, I have depression. No, it’s not because of my fibro. My depression started at age 16, but fibro, we believe, started from Mono when I was 19-20. So, obvs they started at different times plus I do know the triggering event that started my depression.
Fibromyalgia 
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