so we have finally reached the 31st of May, the final day of fibromyalgia Awareness Month. I know I’ve been posting a little extra and almost exclusively about fibromyalgia this month but but else would I do? LOL
what I would like to thank all the people in my life who support me. I made masks for those closest to me as well as myself. I would like to thank each and every one who wore these masks & I hope will continue to wear them until we no longer need them.
This lad is on of my guy friends whom I am fairly close to, but I was surprised when he said he wanted a mask. Apparently he knows others (including 2 mutual friends) with Fibromyalgia.
Tony.
The only one I made a mask for who I do behave an image of is my nephew cuz he couldn’t find his (not surprising, cuz his mom’s wearing it!) But my sister, her 2 daughters, and my Mom & Dad. I thank my family for their support
Cassie & Kyah, Wendy, Dad and Mom
My best friends and their partners.. I’ve known both Catherine & Gerry since high school. I’m lucky to have maintained their friendships after 30 years. I thank them & their partners. Cath’s masks read “I wear purple for my BFF” & “I wear purple for ME”.
Catherine & Brett and Sara & Gerry
As many of you know, I’m involved in Scouting & I had some of my fellows outer request masks as they know how much it impacts my daily life.. I worked with Rainbow 13th directly for 2 years in Beavers & she is our outgoing group chair for one group. Raksha 13th has worked with me at Cub level for 3 years now& is out incoming Ng chair. She has seen how it impacts me and the improvements I have made over the last few years. Rainbow 1sy, well.. I’ve only been working in tandem with her since Covid hit & we initially amalgamated the groups, but like the bffs, I’ve known her since highschool and we did Venture Scouts together as youth.
& I support me. Some days I have to remember that.
i have 4 masks.. 2 that say Fibromyalgia Awareness, but different patterns.. one that states “I wear purple for my BFF” (cuz my bff has fibro too) & “I wear purple for ME”. Mine, I will have in regular rotation – good thing purple is my favourite colour..
4 different days 4different masks.. & Yes, each has been worn several times over the last few weeks. Very rarely was I not in a fibro mask. & If not, I had purple butterflies!
So everyone who supports someone with Fibromyalgia, on their behalf, I thank you. Whether it’s doing our groceries wearing a mask for Fibromyalgia Awareness or just checking in to make sure we’re ok,, we do appreciate you & your support.
Although more women than men are diagnosed with fibromyalgia, the condition can affect men, women and children. The condition doesn’t discriminate by age, race or gender.
Myself, my issues started at age 19-20 when I has mono during summer break
They have also found that with the new criteria, there are many more men who are getting accurately diagnosed with fibromyalgia.
Am I better than yesterday? Or Last Week? Last Month? Last year? Maybe, but that is not what you are asking, is it?
You are wondering if I still have Fibromyalgia or CFS/ME, or one of the many other invisible illnesses like Lupus, or Crohn’s disease. The short answer is No.
There is currently no cure for these debilitation yet chronic medical conditions. While there are treatments that *can* improve one’s quality of life, they do not work the same with everyone.
Now some people who are familiar with these conditions will ask that but mean something different. They are asking how one is, wondering if today is a good day compared to the bad day from last week.
Are you Better?? The connotations of the word better are eliminated by using a word like improved.
My answer to the later question uses the word “improved” not “better”. It clears things up because of the lack of clarity & assumptions made when using the word “better”.
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.
Widespread pain is the common factor among those with fibromyalgia, though there are also particular points in the body more sensitive to pain (‘tender points’) that many experience and are often used in the diagnosis of the condition. Pain types also vary, from stabbing and burning, to aching and throbbing. There are also numerous other symptoms commonly found with fibromyalgia, from digestive troubles and fatigue, to stiffness and cognitive problems (aka ‘fibro fog’).
Symptoms not only vary between people. They can vary for the same person, minute by minute, day by day. It’s unpredictable and no two days are ever quite the same. There can be ‘flares’, where symptoms are considerably more severe compared to that person’s usual baseline; such flares can be unbearably exhausting and painful.
The extensive myriad of symptoms of fibromyalgia can’t simply be pushed through nor is it a case of mind over matter.
Most people don’t think that much when asked what your pain is.. “10 being the worst pain imaginable” Ok…but some people have an active imagination others not so.much…
Some people would think a broken arm is the worst feeling imaginable – Seriously?!?.. Some choose childbirth & yeah that hurts like an Fkn S.O.B…Or so I’m told.. Similar pain levels as Kidney stones.
Ok.. I’ve had kidney stones – they severely suck, but I only rated the kinda pain as an 8/10.. Cuz there’s worse pain that I could feel.. Like having limbs cut off with a chainsaw without the benefit of anesthesia.. Yeah, that would be my 10..
So when I go to the ER & I say I’m a 7/10.. They think yeah ok.. then I tell them what I consider to be a 10.. then they look at me differently.
So think it through the next time you talk to your doctor or someone asks your pain levels… & Clarify what you consider your 10 to be.
As you’ve seen by some of my other recent posts, I was recently in the emergency department due to pain. The pain in this case was not due to fibromyalgia or endometriosis or any of my other chronic conditions. Or at least I didn’t think so. I was concerned about a blood clot due to the AshraZeneca vaccine I had received the week prior.
Summary of that ER visit, I don’t have a blood clot. I’m fine.
At the ER, due to possible AZ issues, *not* Fibromyalgia, and *not* OsteoArthritis.. So it’s still been over a year since me last FM/OA pain crisis.
But the point of this post is that I have not been to the emergency room since before COVID started. 10, 12, even 14 years ago I was a frequent flyer at Centenary Hospital in Scarborough. I was there about once a month and it was not unusual to be there multiple times in one month. It actually got to the point where I knew the department head by name, and he knew me, by name. In the grand scheme of things, that not generally a good thing.
Even after I had moved back from Scarborough to Oshawa I was still going to the emergency room every 2 to 3 months due to my fibromyalgia & OA pain.
Butt as things have gotten more manageable, as my weight has decreased, my fitness level has increased, my diet has improved, my medications have been cut back and altered in a positive way, I have become healthier and healthier. I have, with the help of my doctor’s, been able to better manage many of my symptoms of Fibromyalgia & OA.
The other day I was actually thinking about when my last visit to the emergency room was. I realized that it’s been over a year because my last visit was prior to COVID shutting down the world last March. I think I may have been in the ER after Cub camp on the family day weekend in 2020.
But think about it. I used to be going for regular ER visits to help control my pain. Now, it’s been over a year since I’ve been in a the RR, and still not for FM/OA related pain.
What makes a disease, disorder or illness real? The terms used for any condition have been coined by someone for the first time and added to medical manuals to account for certain diagnostic markers or symptoms.
What makes that condition real? The lack of a specific test to definitively conclude the presence of fibromyalgia does not make it any less real than the many conditions that likewise lack a particular test for diagnosis. Diagnosis of fibromyalgia is challenging and often involves a process of elimination. Nonetheless, there are specific diagnostic criteria to be used in a diagnosis of fibromyalgia.
Fibromyalgia is also an invisible illness. Just because someone may look ‘fine’ does not mean that they are. Many Fibromites and those with chronic pain have become skilled at downplaying just how poorly they’re feeling and how bad their pain and other symptoms really are. “I’m fine” is probably our most common lie.
There are several different version of this all of which are accurate.
Just because a condition cannot be seen from simply looking at a person does not mean the illness does not exist.
In case you missed the prior post, I had the AstraZeneca shot last Thursday and had an immuno reaction to the vaccine. I was laid out for several days, but was eventually feeling better.
AZ Vaccine
As you probably heard on the news with the AstraZeneca vaccine, there is a very rare but potentially fatal fatal side effect of blood clots. The biggest indicator of a blood clot is sudden increase in pain, including a headache. A second possible indicator is a shortness of breath.
On Wednesday afternoon, while I am dealing with my fibro flare that was stimulated by the vaccine response, I suddenly get a very sharp and dramatic pain in my right calf. To me, this did not feel like the normal pain I would have from fibromyalgia in that it was stronger in that single place and that it had a sudden onset.
Off the the ER I go.
Out for fresh air while waiting for test results outside OFH LHO Emergency Department
I was a little surprised that it didn’t take me right in, but I was triaged and registered within 20 minutes and took until near 10:00 at night to see a doctor. He ordered blood work.
an hour later I was back into the emergency rooms internal waiting room and set for another hour waiting for the physician to come around and give me the results. He reviewed everything and I was told that everything was normal except for the reading that says that no I don’t have a blood clot. I needed to get an ultrasound.
Of course ultrasound is closed at that our so I was given an appointment for later that morning at 10:00 a.m. at the hospital.
I’ve never had an ultrasound on my leg done before but not as uncomfortable as I was expecting it to be. The whole test took about a half an hour because she checked my blood flow all the way from my hip down past where the pain was in my calf. I was told the test results would be back in the ER by the time I got there.
So I had to go back to the ER, re-triaged, re-registered. After an hour of sitting in the emerge I was finally taken back to get my results. And I waited for another half an hour before a physician popped his head in. He asked me if I had a history of blood clots and when I said no he asked me what I thought why I had one and explained that it had pain and that I’d had a easy vaccine the week prior. The doctor just simply looked at me at that point and said “You’re all good. No Blood Clot.”
Big sigh of relief, for me & my friends that I was talking to online as well as family.
Recently, I received an email from Sobey’s Grocery stores in response to my request to be waitlisted for the vaccine.. They said, I was eligible for the COVID vaccine, for the AstraZeneca vaccine. Finally!!
AZ Vacvine
I went & signed up. It turns out the closest location for the shot was in the city a Gerrard & Vic Park. I’m sure there’s not a lot of you familiar with the geography of Toronto but from my home it is approximately 50 km or just over 30 miles ( just under an hour away) to that specific grocery store for my shot. But I was going to be going into Scarborough (East Toronto) anyways because of Lilly’s surgery. I figured I’d would kill two birds with one stone.
My Shot, Thursday
So my appointment was on Thursday, at 11:30am. It was super quick. By the time my brain registered the sensation of the needle, she was already putting it syringe into the sharps bin.So, even if you don’t like needles, it’s not that bad. I stayed the required 15 minutes. No reaction initially other than some moderate nausea.
Waiting n the cubical for the pharmacist to give me my shot
The nausea stayed with me for the day. I was a little tired afterwards & had a short nap which helped me feel a little better. Even went for walk with my sister in the evening.
My Reactions – That Night
By 2:00am the nausea was worse, so much so that I had an empty bucket beside my bed, just in case.
Shortly after that I noticed I was cold. I was eventually shivering despite pj’s and warm bedding. My temperature at this time was 38 & change in Celcius .
My arm was sore, but most people have that reaction. My fibro was triggered and my pain was climbing everywhere. At worst I’d say 5/10.
By 5:00 this morning my body had switched from shivering to sweating. I was also having a headache kick in. I took some Tylenol with codeine and was finally able to get back to sleep.
My Reactions – Next Day, Friday
I was abruptly woken up by my Mom at 10:30am for a temperature check. It was 36.8, completely normal. After checking Lilly & giving her meds (see her surgical post if you are interested), I went back to bed. Fortunately in the morning, the body wide pain had taken a step back and no more shivering or sweating. I did still have the headache, and the nausea but it was not as bad.
As the day wore on I’d flip from chills to overheating, but no temperature. The nausea kept up and I did rush to the bathroom with dry heaves. The body-wide aches went back up by bedtime.
My Reactions – Day 2 Post Vaccine, Saturday
Still has ongoing flipping between chills & hot flashes. Left arm still sore.. Ongoing body aches all during the day.. Still nauseous, but not actually vomiting..sent alot of my time resting.
My Reactions – Day 3 Vaccine, Sunday.
Chills & hot flashes completely abated by the evening and the nausea aswell. Still had body-wide aches & pains.
My Reactions – Day 4 & 5, Monday & Tuesday.
I think by this point I was completely finished reacting to the actual vaccine, whoever my fibromyalgia decided to react to the vaccine reaction. Oh so fun. So by the time I woke up on Monday I was in a lovely little fibro flare that has lasted several days. Only thing I accomplished was the opening & closing of my Tuesday Night Cub meeting.
So, by this point my actual immunoreaction to the medication in the vaccine was done, but not the end of this saga of my vaccine.. Read here for more on this story.
Fibromyalgia 
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