Archive for the ‘Fibromyalgia’ Category

Flaring! Flaring bad!

November 23, 2021

Yesterday was the perfect storm. Everything conspired against me.

  1. 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..
  2. 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.
  3. 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..
  4. 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.
  5. 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
  6. 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..

I just can’t win..

Burn the Bras!

November 12, 2021

No woman can say they love all their bras. In fact most women *hate* their bras.

With some women with fibro, especially bustier ladies like me, can not wear a bra.. We have a low tolerance for the discomfort from the shoulder straps. Yes, they dig in for every busty woman, but because we have chronic pain, we tend to feel this sort of thing more keenly.

Bra Straps can Cause Irritation, Redness, Chaffing, Friction, Bruising and Pain

The underwire is another deadly aspect of many of the current styles of bras. Yes, the wire end are rubberized to protect us, but they still jab into you. I had one that was so bad that it started ripping through the material. The smartest thing I did with that bra was to remove the underwires.. It was a whole lot more comfortable after that.

Underwires Severely Suck

Sometimes even just the strap around the ribs can be very painful. This goes for sports bras or short tank top styles aswell. I wouldn’t be surprised if that pressure is agitating a form of costochondritis.

Bands on Bras Tend to be Worn Too Tight, Mistakingly Thinking it’s Better Support Its Not & it Hurts

One last thing is that so few women are wearing the proper size of bra. And out size does change. Here is how to measure yourself for a bra:

  1. THE BAND: Measure around the body directly under the bust while wearing a bra. Round up to an even number if necessary. For example a measurement of 42″ gives a Band size of 42, but a measurement of 43” + 1”(rounding up) gives a Band size 44
  2. THE CUP: Measure around the fullest part of the bust. This is the bust line measurement. The cup size is determined by the difference between the bust line measurement and the frame size.
What is the Difference Between Your Measurement Under the Bust and Your Measurement at the Fullest Part of Your Chest

Stress Impacts the Body

November 5, 2021

You all know stress impacts the human body. No one knows this more than people with Fibromyalgia. Part of our issue is that our muscles cannot relax because of the pain signals we are receiving at all times. Add stress to that, with most common physical reaction to stress is muscle tension. So adding tension to an already agitated muscle makes for a disaster.

No one knows yet 100% of the cause of Fibro. If it’s actually a physiological issue or if it’s a neurological reaction? Either way, the addition of the tension to the already agitated muscle, skyrockets the pain, with definite real pain.. Not just a neurological misfire that we could potentially be having.

And before anyone says I’m minimizing pain, I am not. People with fibromyalgia feel pain every single day. – it’s the cause we don’t know. We don’t know if the cause is something physical in the muscles, we don’t know if it’s part of the nerve chain or even something in the brain. We.just don’t know And as many of you know, I’m in a remission with my Fibro. I still feel pain, but I’m better managed and had made alot of changes a few years back. As a result, my pain levels rarely rate over a 5 – right now. I have, in the past, been bed bound. So I’ve been at both ends of the spectrum. I am the last person to downplay anyone’s pain let alone someone with Fibromyalgia.

But back to stress… I’ve been dealing with some pretty intense issues lately.. The big 2: 1. Problems with my Mom & our relationship.. 2. Issues with the guy I’m seeing – relationship may be ending. And I don’t think either one reads this blog. Those are the big ones but there is always in additional normal day to day stresses..

So….. On Monday night I had a breakdown. A complete emotional & mental breakdown (this does not include the meltdown I had earlier that day). I was in such hysterics that at times I could barely breathe.. You also don’t want to see what my kitchen looks like, cuz it all hit me as I was cooking stir-fry, which means three pots on the stove, each carefully times so everything finished hot at the same time. Interestingly enough I could feel myself deteriorating and the rice was pretty much done, the meat was pretty much done and the vegetables were almost done so I took the presence of mind to grab storage containers and just put everything in the fridge because there was no way I was going to be able to eat it and I have no family to feed. But I didn’t give myself enough leeway and ended up destroying the contents of the shelves with the storage containers.. Apparently I have a decent arm because I found, after the fact, empty storage containers or lids in my dining area, my office area, one almost in the living room and also my bedroom.

I ended up calling the local mental health line & spoke with a gentleman named Craig who listened & offered support..Initially, my mind had been racing with a lot of dark negative thoughts.. But I finally got calmed down enough after over an hour of venting. & I was no longer in that dark and twisted headspace.

I woke up Tuesday morning physically & emotionally wiped. Unfortunately this was one of the days that I just can’t say no. I had to drop my mom off at her doctor’s appointments because she no longer drives. I still also had to finish prepping my Cub Scout meeting.. Which meant I also had to run my Cub Scout meeting because this week got dropped in my lap on Sunday. The meeting went well and I was able to get out of my head for almost 2 hours not thinking about those big two issues. By the time I got home in the evening after my meeting, I stripped down, showered, got extra medicated and watched some mindless TV. That’s all my body would let me do – I pretty much hit the wall. Oh & eat some of the stir fry from the night before – lol.

And this excessive physical reaction is 100% due to stress exasperating the Fibromyalgia and some of my ppother chronic pain issues.

Fibro Friends, IRL

November 2, 2021

It’s interesting to note exactly how many friends I have, real, in-person, face-to-face local friends that I have with Fibromyalgia.

When I first started having symptoms in the mid-90s, I’d not heard of Fibromyalgia let alone know someone with this condition.

I only found out about fibromyalgia through, unfortunately, Dr Google. Few doctors had even heard of it then. Many did not believe it existed. Few had any idea how to treat it..

Jump ahead a few years..

  1. First person who was a friend of mine is Billy Jo. Her and I met in a mental health workshop in my local hospital. We met because of mental health & connected over of common physical health. We have been friend for.. 8-9 years now…
  2. My BFF was also diagnosed with fibro about 7 years ago. Due to an abusive relationship I was estranged from her while she went through her diagnosis. However, because she knew of my struggles and issues I’ve had getting diagnosed & treated, she had a good idea of what the process was & how to get it sped up.. my diagnosis took 13 years.. Hers only took 3-4 years.
  3. I had left the aforementioned relationship approximately 5½ years ago. This was just in time for my high school reunion.. One of the people I reconnected with another girl named Jo.. While we were not friends in high school we did know each other and we have to come friends in the here and now. I think part of the reason why we connected so well was because I understood and she did not have many other friends let alone ones who got & understood the issues with Fibromyalgia.
  4. Shortly after that reunion I connected with a lady in Newcastle who is my twin. No, we look nothing alike however there are so many other similarities. We were born within two weeks of each other, we both went to the same high school, we have almost the exact same list of medical conditions including Fibro, we react well to the same medications as well as an overlap in personal interests beyond our health. So we met about 2 years ago, shortly before covid and we’ve connected over these similarities, but also over our differences.
  5. Growing up, the neighborhood kids down at the end of the street were friends.. The oldest had a big gap between herself and her younger siblings so she hung out more with my older brother, his friends and some of my friends as she was a few years older than me but many years older than her siblings. After I moved back to Oshawa we eventually started connecting again a few years back. She also has Fibromyalgia.

Its interesting how many people have fibro that you may not even know about..

Stuff That Doesn’t Mean We’re Okay

October 29, 2021

Posted on February 28, 2017 by MyFibroTeam

Life as a “normal” person is turned upside down when suffering from & living with chronic illnesses. Often these conditions are invisible. This can cause many to not understand and not believe that you’re as sick as you claim. They have to realize the despite the image we may project, we are in pain Every Single Day.

Then there’s the Catch-22.. Should I put forth an effort into my appearance when I miraculously do go out to look ‘normal’? Should I show up looking as bad as I feel? Or should I even bother going out? It’s a tricky thing — trying to live normally when your life no longer is. People tend to be surprised when we post a well-articulated paragraph on Facebook, have a good laugh, talk about things other than sickness (apparently lately ive been talking non-stop about Cub Scouts), write a highly researched, factually correct well written blog post, or bigger things like going on vacation even if it is just to go up to the cottage.

It is sad that we need to point out these things. It has hit many of us more than once that appearance, timed-just-right clarity of thought or momentary positive mood seem to adjust the perception of those around us creating more doubt in the truth that we each are really very, very sick.

So to that end, Take into account that while we may do things one day, these activities are not necessarily our norm, or it is something we have planned for well in advance. Review this non-exhaustive round up of things that do not mean we’re lying and actually okay:

1 – Articulation/Ability to Communicate Well

Admittedly this is currently one of my prominent disabilities, impaired cognitive function. However, many others can found themselves in the middle of a conversation in a rare moment of a clarity & articulation. And even myself even more rarely. These are the times where we have clarity of mind, excellent though process and the ability to communicate well. . In these moments, we are not communication like someone who is ill. It impairs the idea that Fibromyalgia and many other chronic disease do have cognative impairments.

i have actually spoken with several others with fibro who are highly cognizant in the change of their levels.. Personally I’m pretty sure my IQ has dropped at least 20 points by now, if not more.. In my mid-20s, I had an IQ of 180, thats hitting genius level. I haven’t had access to retesting, so I dont know 100% sure, but its pretty obvious to me.

2 – Laughing and Smiling

Apparently, those of us who are sick are not allowed to be happy, be joyful and positive. Yes, we are in pain & have memory/cognative issues, are drained & exhausted, have issues with sleep and deal with mental health issues, so some think it would get us down and we would not want laughter. In actuality, we need it the most because it feels good.. Smiling and laughing have little to do with someone’s health or pain levels. Those with chronic conditions have become strong from all the suffering they experience, they can still laugh and smile while in pain, which says not that the pain is low but that the need for relief is high.. Additionally laughing with others releases endorphins in the brain and it activates the release of the serotonin, both of which are homegrown feel-good chemicals which can only make us feel better.

3 – Getting Out

Being social is something we need to do. We can get both depressed and anti-social due to our chronic conditions. Some go “all out” as far as appearance: hair fixed, makeup, jewelry, and a dress. But I’ve never been one for being ‘dressy’ so when I go out I tend to be in jeans & a nice top. I’m not going out to impress, I am going out to have fun & enjoy myself.. But, I do tend to dress a little more sexy & with make-up when going to a club..

Some go out frequently. Personally, for purely social purposes, I go out once a week, maybe twice (without covid) . But, I also go out for Cub Scouts weekly which is different than social but is still getting out. I also get exercise – I walk weekly with my sister & our pups. We end up talking the whole time. I have also recently joined an exercise group that meets weekly which is also both social, but also exercise. Unfortunately, with my bff living out of town, & her also having fibro, we dont get to actually see each other that often even tho I have a key to her place.. I’d probably go out more if she was closer & she wasnt so busy with work..

So while we can & do get out, its not always a reflection on our health level. Sometimes we need to make accommodations. I’ve gone out to a bar, medicated on narcotics, to be with friends. (No, I wont drink) I’ve gone to Cub Scouts Day Camp the day after an unsuccessful ER visit, looped up on muscle relaxers & anti-inflammatories or MMJ. I had to go – I had half the equipment *&* the itinerary. Dont worry, there are other leaders because if I’m medicated, I don’t count for ratio. I’ve also usually had either a hot shower or preferably, a hot tub, when available, after almost any type of workout to minimize and even help prevent any residual issues I might have the next day or two. Unfortunately, there are still many times that I still need to cancel plans with scouting, friends, family & intimate relationships.

4 – Technological Activity

Technological socialization is all a lot of us have, especially with COVID. We tend to find typing on a keyboard or on text to be almost always easier. With the hermit life many of us live, we might also avoid telephone conversations because in & of themselves they can be stressful & exhausting. So when my whole body feels like death warmed over, but I’m usually more able to move fingers either on the laptop of cellphone. While a “activity” in no way suggests any other type of activity whatsoever, many people assume that because you are participating online that you are fully functional. Sometimes we express ourselves via social media just to stay sane.

If I post something non-health related or — shocker — something happy on social media or my blog, I wonder if others see it as me being “well,” which is never the case. Our illnesses are always, always there, even if we’re not talking about them at the moment. No matter how much we wish to ignore them, we would still prefer to make them go away.

5 – Announcements that Imply Activity

Many of us are creative people in some format even if is just colouring.. Due to COVID, many people have added extra creative outlets over the last 2 years.. But every new pursuit that is public in any form makes others wonder if, as mentioned above, people see those pursuits or accomplishments and think, “Oh see, she’s doing well.”

But you need to understand: I am on disability and I have no “real” job. My life revolves around creative outlets, medical appointments, cub scouts, health & wellness, Lilly, family, friendships and my social media & Blog. With my very messed up sleep schedule, I do dishes and laundry when I can, and attempting to keep both my pup Lilly and myself fed. Seriously. All of that is my every day. And as little as that seems to be, to my body, that is a whole freakin’ lot. And it gets overwhelming, and some days I can’t even do half of that.

But some days — or nights in my case — are better than others. And that healthy girl who lives buried in me somewhere is begging to come out and create, and sometimes I just have to listen. So when I post about the awesome stuff my Pack is doing, share images of my latest painting project, talk about my love of soccer, add to my Varage Sale store, or am chilling up at the cottage for a few days, all this is done either on a good day, or only take a portion of my day, but is the only activity.. What you see are ‘snips’, brief moments it time, a small glimpse into the parts of my life I want to share. And even then, some of those can be done while still laying in best, resting my body, but still having an active mind.

We are never fine. Whatever assumptions you make based on how we look, how we move, what we do, or even what people “think” we can do, the only thing safe to assume: we are always worse than you think we are


The original post was first published here, While I have kept some of the content, I have also made multiple changes with my own feedback, comments & experiences.

The original author Kacie Fleming has learned about health and treatment options into the nearly six years since being labeled with fibromyalgia. She lives in North Carolina with her husband and spends her time working on her handmade jewelry.

What *Is* a Flare Like?

October 26, 2021

This is very hard to explain as each one is different.

A flare can vary in duration, intensity, symptoms, triggers

A flare can last for a few hours, a few days, a few weeks, or even months.. Possibly years..

A flare can simply be a temporary exacerbation of symptoms that can be treated reasonably easily through medication and rest. A flare however can also be a debilitating excruciating exhausting with a skyrocketing increase in symptoms.

A flare could be pain, fatigue, insomnia, significant cognitive impairment, muscle spasms or charlie horses, IBS/IBD inflammation, exacerbation of sensitivities to food, smells, touch, less severe symptoms include body temperatures fluctuations, nausea, RLS, TMJ, dizziness/lightheadedness, costochondritis, headaches or migraines, numbness & paraesthesia

I am not including depression in this list despite the fact that many will think that yes this is part of a flare. For some it may be but for me my depression is not related to the fibromyalgia so much but the limitations of the flare in physical activity, mental stimulation and socialization.

With all the symptoms listed above a pain flare is different, day by day, hour by hour, trigger dependent and with various possible causes, intensity.

For example, one person might have issues with increased migraines and fatigue.. Another might have a flare in IBS/IBD symptoms, or muscular pain or cognitive issues. No 2 are ever alike.

Recent ER Visits

October 22, 2021

A few weeks back, I was talking to my mom about my health and we were discussing one of my previous trips to the emergency room. The visit in question was due to mental health not physical but it’s still triggered a thought in my head.

I used to be a fairly regular patient when I lived in East Toronto.. At my worst I was in the ER at either Centenary or Scarborough General 2-3 times a month for quite a while.

With this conversation, I came to the realization that I haven’t been to the ER or the hospital since covid started, and the world shut down March 2020.

This means that I had not had to go to the ER for my pain at all for almost a year & a half! Personally, I think that’s pretty good!


Before anyone tells me that a trip to the ER is pointless & they will just accuse me of wanting drugs and won’t take me seriously. I believe I’ve actually addressed this issue previously.

When I go to the ER, I’m not looking for narcotics. What I want is big shot of toradol and some sort of stronger muscle relaxant. What this does is it calms down my osteoarthritis which makes the rest of the issues significantly more manageable.

There is even one doctor there at Oshawa General who also used to be at Centenary where I used to go when I lived in Toronto. Because of being a frequent flyer when I was in Toronto, this physician knows me on sight, knows my likely issue, and will turn around and say “Toradol shot?” And he writes the order for me. I can be gone in minutes once I’m in the back when he’s there.

Food Choices with Fibro X

October 19, 2021

The one other thing that many Fibromites have is common, but varies greatly is MCS – Multiple Chemical Sensitivities.

MCS is considered, in the most part, an environmental illness – a condition activated by the things in the world around us . Possible triggers that set off people’s symptoms vary including tobacco smoke, auto exhaust, perfume, insecticide, new carpet, chlorine, and more. Other chemicals that can set someone of are also in food or beauty products like moisturizers, or facial cleaners..

But there are also chemicals in our food.. Some of those chemicals are pretty scary.. I’m allergic to a binding chemical in food, but its also in the adhesive in bandaids & the other is found in moisturizers.. So makes you wonder..

My MCS issues in the way of food are Xanthan Gum, Guar Gum & Carrageenan.. This limits my food so I cant eat:

  • Ice Cream / Frozen Yogurt
  • Breaded foods like Chicken fingers & fish sticks
  • Sauces including mayo, bbq sauce & salad dressing
  • Most dessert
  • Most premade meals
Foods most take for granted that I shouldnt even touch

I also react to certain products but i dont know why such as KD. The brand name Mac & Cheese does a number on me, but other brands dont.. Another example is Campbell’s Chunky Soup – Beef, but I can eat any other chunky soup by Campbell’s.

As you can see, I cant eat alot of pre-processed food.. Whats sucks the most is the Ice cream & desserts. Only ice cream I can have is Haagen-Dazs.

And yet every one is different. Some people react to sulphites, some to food dyes, and others are sensitive to certain products like milk but not cheese. It makes no sence but there it is.

Food Choices with Fibro IX

October 12, 2021

Sugar is a kind of cellulose, that is to say, a material that offers energy for the body. This perk often appeals to people whose fibro symptoms leave them exhausted. In large amounts, sugar can pack on the pounds, causing fibro patients to experience even more pain. An article in the Journal of Pain found that overweight FM patients agonized more extreme symptoms, including sleep problems, stiffness, and pain. If you are yearning anything sweet, Batayneh says, go for the things having natural sugars, like a slice of fruit.

Sugar…Sweet, sweet sugar…

i definitely agree that with being smaller does help with the physical stress on my body and significantly lowered my pain level.

While I have lost a shit-ton of weight, I still very much have my sweet tooth.. Yum!! Probably why I’m stalled for over a year..

Various Sweets
More Sweet Desserys.

Sensitivity

October 8, 2021

In doing a bit of research about chronic illness and the story “The Princess and the Pea” I found an article written by a woman talking about her sensitivities. One of them being being able to feel the pain but the other or another is being an empath and being sensitive to stuff around her.

Being an Empath: My first year in New York, I saw a therapist who worked out of her apartment. I’d visited her there many times. One day, I walked in, and the moment I crossed the threshold, I stopped dead in my tracks. Something was different. My eyes scanned the apartment looking for what had changed, and as someone who was called the princess and the pea for being persnickety and whatnot, I was very familiar with the precise placement of everything in that area of her apartment. But as I looked around, I realized that nothing had moved, yet I could feel an immense change in the space. My eyes continued to search for the cause, but they never found it. What’s wrong? my therapist asked. Something’s different. I can’t figure out what it is. She gasped a bit, and she told me: I didn’t move anything, but I decided to move, and this week I began emotionally disconnecting from the space. You must be able to feel it.I’d certainly felt something. It’d hit me like a thud. Perhaps her emotional connection had previously imbued the space with a particular energy? Who knows, but since that time four years ago, I’ve increasingly worked to harness the power of my sensitivity. The same sensitivity that drew me to choose my Grandpa’s high school yearbook from hundreds of books in a used bookstore. The sensitivity that warned me when something was wrong with one friend and told me when another friend would find a home. The sensitivity that allowed me to feel the mountains in the middle of New York City. And the sensitivity that allowed me to smell faulty wiring in the half bath of my parents’ home and sense its danger and beg my mom to call the firemen. It’s a good thing you called, they said, this would have started a fire at any moment.It’s really this sensitivity

Now given what she posted, I have to say I’ve had brushes to the other side myself… The most noticeable was the premonition I had..

My Premonition: In the Spring of 2001 I was living in Williston North Dakota, and commuting to work in Watford City.. One day on my way to work, I suddenly had a very strong and impactful image hit me while I was driving, so I had to pull over.. It was about my bff.. She and another friend were driving some place. My bff can’t drive, so she was in the passenger side. What the premonition showed me was the two of them getting into a bad accident. The other car made contact on the Driver’s side, throwing the friend clear. Their car however was propelled around a street lamp, causing my bff to die instantly. Needless to say, I stayed pulled over for about an hour, blubbering my eyes out. Intellectually, I know it wasn’t real, but it felt *so* real that I could not help having an appropriate emotional response..

What happened? In February of 2002, the unthinkable did happen. While not the exact same as my previous vision, it was still true. There was just one big change : It was not my bff & her friend, but my sister & her partner (she was a cop).. however the other facts were the same: getting hit in the driver’s side, the vehicle being spun, her partner in the driver’s seat getting thrown the vehicle wrapping around a tree instantly killing her.

While this is not the only time I’ve had this sort of thing happen, it was the biggest, the most noticeable and the most important one I’ve had.

Has anyone else had experiences like this?