Archive for the ‘Coping’ 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..

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.

Working the Federal Election

September 24, 2021

On Monday past, here in Canada, we had a federal election. End result was we are now $600 million more in debt & the government changed by about 3 seats. We still have a liberal minority.

Directional sign by Elections Canada signifying our poll station.

But I’m mentioning this because I work the elections. It’s a long day but it’s actually kind of fun and here in Canada we get paid for it..

I did a training several days before & I get paid for that.. On the day of, polls are open from 9:30 to 9:30. We were required from 8:30am to whenever we got all the electors in.. Fortunately, our location was dead after 8pm. Other locations had people lined up around the block at 9:30pm when the polls closed (If they were in line before 9:30, they still got to vote. )

So there was a couple things that I did to manage.. I changed jobs so I wasn’t always standing or always sitting. Because our station was not very busy I was able to walk around quite a bit when I needed to move. I took my lunch outside and the same with my dinner, enjoying the lovely weather. I had my regular meds plus additional other meds in case pain levels went up. I did yoga – no not getting down on my hands and knees on a mat and doing stretching poses, but I can listen my back up, rolling forward & back similar to cat and cow, just in a chair. Last time, one lady actually stood up & did some full blown yoga poses!

So, basically I kept moving & kept lightly drugged the whole day.. But it works for me!

Socializing While In Pain

September 3, 2021

Do I socialize when I’m in pain?

Yup, I socialize, otherwise I’d be a hermit!

Yup! Otherwise I’d be a hermit. Plus, very few friends can identify how much I’m in pain. My bff & my sister can tell by looking at me.. I have other friends & family who have learned the signs.

Mom can tell usually just by looking at me.. not always, but usually.. My sister is pretty good.. Her kids & hubby not so much – ironically I think the kid of hers that would recognize the best is her youngest, because he has seen me the most over the last few years.

My guy friend T has, over the last 3½ years learned quite a bit about how to read the non-verbal clues.

My BFF also has fibro & is sometimes a little too focused on her own fibro to catch my issues. Only reason I can gauge her easily is that she has an emotional response to her issues that I don’t even think she’s aware of.

My second BFF also has his own issues, and usually only sees me on better days.. I don’t think he’s even seen me at mediocre or worse in a long time..

Them there’s some of the Scouters I work with.. Raksha 13th & I have become good friends through Scouting & Rainbow I’ve known since grade 8 or 9, but through guiding & scouting as well. They are pretty good a picking things up.

There are other friends who are less prevalent in my life but even they can recognize some signs if I’m having issues

What I Can Do.

So, there is the basics of who I tend to see most, then the next thing is *what I can do*. Mind you the days when I’m seriously f****d up due to symptoms, I don’t talk to anyone unless I haveta Haveta HAVETA.

Now pain & other symptoms varyy from week to week, day to day, even hour to hour.. Fortunately in the last few years the hour to hour option seems to happen less and less frequently, but for a long time that is how I had to play it.

When my pain levels are super high, any communication is digital.. To everyone. If you’re lucky..

Digital Communication Only on my Worst Days, At Best

Next level down:

  • Mild exercise like walking my dog around the court
  • Have company over for low maintenance visits
  • Socialize for dinner with Mom & Dad
Exercise by walking the Dog Around the Court Is All I Can Handle Some Days.

As my pain levels drop, I can be more sociable in activities that require less interaction such as:

  • Hanging out with selects friends in a quiet environment, such as a campfire, living room, patio, poolside, dock.. This would be BFF’s, & T, for the most part
  • Walking around the neighbourhood
  • Watching the kids’ soccer games
  • Visiting the family cottage for a few days
  • Visiting the gym for a hot tub!
Hanging out with Friends, in Front of the Campfire, or Otherwise, Though we use Chairs – LOL

As the pain levels drop a moderate to low level I can usually do the following:

  • Karaoke
  • General.Cub Scout Activities
  • Marksmanship
  • Hangout with friends in a noisier, bigger, busier location like a restaurant or bar
  • Moderate exercise like the walks with my sister & the pups
  • cub Scout meetings!
  • Glamping at my BFF’s cottage
  • Concerts (depending on who, I may go on a worse day & accept the consequences)
  • Professional sporting events like the Leafs, TFC or The Rock.. & to a lesser extent, Argos, Jays or Raptors..
Concerts with Friends Are Always Fun!!

So assuming my pain level is low, there is a lot I can do. I can:

  • More strenuous exercise such as cycling
  • Visit the gym for Aquafit, yoga, weights, or the track. I had gotten in a few slow Zumba classes in before COVID..
  • I can Camp – not the glamping like at the cottage, but camping with friends, and even my Cub Scouts . In fact we were going to Camp Impressa for a year end camp earlier this month with my senior Cubs & the Scouts (See more in this post).. & I just went camping 2 weekends ago with T
  • Sporting activities like soccer with the girls or golfing with T
  • Some of the more physical activities in Cub Scouts.. Such as teaching how to put up tents, waterproofing the bedroll, setting up grey water, basic orienteering, limited kayaking/canoeing, etc..
  • The Pheonix. – Dancing at the club!
  • Hiking (like fairly flat, fairly short, nothing overnight – Second Marsh near me is a good example)
  • Roadtrip!
Easy Hiking with Friends

What I can not do.

There are so many things now that I would like to do that I just not in the cards. These are activities the I’ve either done or were at one point on the bucket list. This includes activities such as:

  • White water rafting. T wants to go – I can do the camping part, but not the rafting part
  • Backpacking/ Hiking. This includes longer hikes, more challenging hikes, or overnight hikes. I can not lug an air mattress through the wilderness 😄
  • Winter outdoor camping
  • Amusements parks – can’t do most of the rides, and way too much walking.
  • Skiing
  • Horseback Riding
  • Zip-lining (not sure I’d do that anyways)
Canada’s Wonderland, the Prominent Amusement Park in the Toronto Ontario Area.

What would you like to do that you know you will never do again?

Following Doctor’s Orders

August 27, 2021

Previously, i had posted about my pain physician limiting my physical activities – not allowed to go to Cub/Scout camp. . I wrote about why & here’s a quick summary from the post

My pain was creeping up and Iwasn’t doing anything to rest. After spiking again last weekend, I had a regularly scheduled appointment with my pain doc. She reviewed my comments & my paperwork and we had a discussion She said that I was overdoing it & if I kept pushing I was going to significantly hurt myself, possibly slamming right out of my semi-remission. So, she said “No, you are not to go.”

My Pain Doctor *ordered* me to not go to Cub/Scout Camp.

So my Doctor said no, & I’m glad she did! Cuz she was right.

Last Thursday I helped the Howlers clean off the canoes so they could use them. (We don’t wanna contaminate the algae or other slime or bugs of one body of water to a new environment)

On Friday afternoon I helped get everyone off, including the trailers for the canoes & equipment.

Cubs At Camp

On Saturday, I finally woke at 10am on 6 hours sleep cuz my pain was keeping me up. Unfortunately, I woke in more pain than I fell asleep in.

i have a pattern – I feel worse first thing & feel good until I approach bed time.. I hurt in the morning because I’m still – I haven’t been moving or stimulating my muscles while I sleep unless of my restless legs are keeping me up of course. When bedtime approaches, I start too slow down and that makes me more aware of my body and the pain and inflammation that I’ve been ignoring comes to light. I have always been like this as a kid – I would be ill, but better in the evenings & want to go to guides or soccer or dance…

Instead of Cub Camp, Saturday activities ended up included folding laundry and reading a book in the lounger in the backyard. Not alot of activity.

So I went to bed on Saturday night in lots of pain. Woke up Sunday with lots of pain.

Sunday required me to pack for the cottage, which was fun..it took me several hours to get my stuff organized & packed (yet still left swimsuits at home).. Imagine, had I gone to camp, how much pain I would be in. Packing up Sunday morning and making a 4 hour drive home, then unpacking equipment at our storage area. Afterwards, add in me trying to unpack from camp, do some laundry and then repack for the cottage all in a few hours then drive almost 2 hours up here..

imagine if I had tried to do camp, I would not have been able to pack for the cottage, let alone make it here for at least 2 days, possibly up to 4 or 5..

So, as the days have progressed, I’m having to be careful.. We (Lilly & I) ran errands on Tuesday, and spontaneously stopped at a local conservation area to take the pup for a walk (6 km later we are both dying) .. I walked around in the cool lake water to help the pain and heat in my leggs as well as a quick dip for Lil for that & heat relief… It helped a bit..

We took Wednesday easy.. Went about 500m in the kayak before I remembered I had a webinar in 20 minutes! & that was my exercise.. And yesterday I crashed out.. not even making it outta bed until 7 – in the evening..

So while, besides yesterday, I’m doing “ok”.. I was managing pain at about a 4/10. Imagine where I would have been had I gone to camp.. Besides packing, I’d be driving 4 hours to the camp ground, help set up three sites, including tents, kitchens and shelter. Poor sleep Friday night would almost be a given, but up between 7am & 8am for breakfast & on my feet going all day, including canoeing with the kids, hiking, games, skills training, archery, helping with 3 meals a day in some capacity, etc. No breaks, no stops, no naps untill after campfire, if I made it that long, starting at 9:30-10pm start.. so in bed for midnight.

Cubs & Scouts Camping c at Camp Impressa

Sunday would have consisted of breakfast & packing the equipment all up & reorganizing the trailer. Then the 4 hour drive back as I mentioned earlier..

if you add all that activity on minimum sleep, are you really all that surprised that I would have crashed on Monday. Which I kind of did anyways just from packing up with the cottage.. if without that activity my pain levels are at a 4, maybe 5. Imagine what level I would have been at had I actually participated. I figure probably near 9/10 and I tend to go to the ER between the levels of 7 and 8!

Normally, if I’m ‘well’ I can do camp Friday – Sunday, then crash for 2 days.. but I can normally make it through camp.. but I wasn’t starting at ‘well’..

So, yeah I am so glad my pain doc ordered me to stay home..

Could You Handle it? Constant Pain?

June 22, 2021

Yes, I live in pain every minute of every single day. It is the Nature of the Beast..

If someone tells you they have fibromyalgia or CFS/ME & are pain free, they are wrong. Pain free days do not happen. If someone is pain free they are either lying to you, lying to themselves or they were misdiagnosed.

Like all Fibromites, I have pain every single day. Some days is really great at 1-2/10, but it has been as bad as 8/10 for my kidney stones. Lately, I’m typically at 3 or 4.

The best I’ve been is a 1.. but a zero? No I have zero pain or painfree days.

I have Fibromyalgia. I live in sin every day. Yes, Every Single Day

So, do I wake up in pain? Yes.

Do I walk my dog in pain? Yes.

Do I do groceries in pain? Yes.

Do I write my blog posts in pain? Of course.

Do I exercise while in pain? Ha – tricky one. Yes, if I can do so without triggering a flare.Do I snuggle up & watch TV or movies in pain? Yes.

Do I socialize in pain? Yup, otherwise I’d be a hermit.

Do I participate in personal adult extra curricular activities while in pain? Unfortunately, yes. There is 2 posts about this topic in the works.

Do do my Scouting in Pain? Yes, I do. Only one person in each group has any clue about how I’m doing Raksha 13 & I have become good friends through Scouting & Rainbow I’ve known grade 8 or 9, but through guiding & scouting.

Don’t I take meds to help with the pain? Yes, but he important word there is *help*.

Now think about this.

Would you be able to handle never-ending pain? Knowing that it will never, ever end? That it could flare-up & knock you out with, if you’re lucky, only a moment’s notice??

Could you handle the negative prospects, knowing that most Fibromites do deteriorate? It means you will likely get worse, not better.

How could you handle additional fibro symptoms like debilitating fatigue matched with bouts of insomnia? What about a loss of cognitive function where you can’t remember silly stuff like the phrase “tug-of-war’ during a game of Pictionary with the kids. How about feeling useless cuz you are unable to help your kid with his math homework because you don’t remember how it works – all you can say is the answer is wrong, but unable to explain why, made worse cuz you had a partial scholarship in Mathematics.

What about the other “smaller” symptoms? IBS? Thyroid issues? Sjorgens Syndrome? Sleep impairment? TMJ? Reynauds Syndrome? Muscle spasms or reoccurring ‘Charlie Horses’? Costochondritis? Muscle weakness? Myofascial Pain Syndrome? Migraines? Allodynia (touch sensitivity)? Chemical sensitivities? Light, noise or smell sensitivities? Restless Legg Syndrome? Paraesthesia?

Admittedly, you won’t have all of these all the time, but they can spontaneously come & go without warning. But is that something you can handle, with the never ending pain & fatigue?

Very few friends can identify how much I’m in pain. My bff can usually spot it a mile off. My sister & occasionally my Mom can tell by looking at me.. I have other friends & family who have learned some of the more obvious signs of higher pain levels.

So yeah, I’m in pain, even as I’m snuggled up in bed, relaxing & medicated. I am still in pain. Always.

Could you handle it?

30 Facts!!

May 24, 2021

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.

  1. Every morning is a tough morning.
  2. I can sleep all day and still feel like I just ran a marathon.
  3. If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
  4. When i’m tired, let me sleep.
  5. 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.
  6. 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.
  7. Yes, diet matters, but in flare mode, all bets are off.
  8. 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.
  9. 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.
  10. 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.
  11. 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!
  12. Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
  18. I can get moody. You would be too if you were in pain all the time, be patient with me.
  19. Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
  20. My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
  21. 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.
  22. 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
  23. “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’
  24. 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.
  25. 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
  26. 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.
  27. Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
  28. 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.
  29. Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
  30. 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.

Original published by Puja Rios on May 11, 2007 at https://www.huffpost.com/entry/25-facts-for-fibromyalgia-awareness-day_b_59148663e4b01ad573dac1c2

What Do Pain Docs Do For Me?

January 11, 2021

As mentioned in my previous post, I see two different pain physicians. Yes they do both know about each other. Actually, one referred me to the other. But why two? Because they do different things that help differently and for different durations.

I know these doctors know what each other’s are doing because I see them both in the same clinic but different offices. And while there are different offices in different cities, my electronic file is available to them both.

Shots with Dr S

My regular appointment is with Dr S.. I actually started seeing her 10 or more years ago, once a week but now generally only see her every four weeks now. From her I get nerve and trigger point injections.

I get them in my shoulder for the nerve going down my arms, 2 injections on each side of the back, the top of my back at the sides of spine in the trapezius muscle, down my back in painful trigger points primarily in the shoulder blade & the latissimus Dorso muscle, 8 shots in my lower back beside the Sacral & lumbar vertebrae, and on in the back of each hip for the sciatica. So a minimum of a about 20, to up to close to 50. Typically I get 30 shots in my back & neck.

Bupivacaine – for nerve & trigger point injections

Bupivacaine injection is used to numb an area of your body during procedures. It is a local anesthetic. It causes a loss of feeling and prevents pain by blocking signals at the nerve endings.

Epi with Dr J

I also, only in the winter, see Dr J.. He is an anesthesiologist and performs epidurals in my lower spine, specifically my tailbone every two to two and a half months. This is in lieu of the injection shots in my lower back as the pain in my lower back goes up during the winter probably due to the cold & the OsteoArthritis in my lower spine. The epidural covers a lot more space on the lower back and does a better job with the pain has it lasts about 2 months, not just one.

Traimcinolone – For coccyx Epidural

Triamcinolone is in a class of medications called corticosteroids. It works by activating natural substances in the skin to reduce swelling, redness, and itching.

Compare: How Do They Work?

The monthly injections with Dr S are done with a medication that is a local anesthetic, While it does help break up the knots of the Myofascial Pain Syndrome, it is primarily a numbing agent forthe pain. Over the years the blockage of pain has lasted longer and longer. Initially it was less than a week whereas now I am almost back to my pre-COVID pain treatment level at almost four weeks.

The epidurals with Dr J are with both the bupicavacine in the lower back and the corticosteroids which is a type of anti-inflammatory. So in addition to the initial numbing, I am also getting inflammation reduction as this medication reduces the signs and symptoms of inflammatory conditions & rheumatologic diseases such as arthritis including RA & OA.

So given that on the weekend, my pain hovered to an 8 out of 10, I am grateful that I was able to book in quickly with Dr J today & glad I’m seeing DrS for the upper back injections tomorrow.

Ongoing Holiday Crash

January 9, 2021

Most of the time when I have a crash in the holidays I end up in the hospital because of how bad the pain can get.. I usually manage for a few days at a level 7 or 8 out of 10 and after that, I’m in the ER.

This year, while the pain has been up, it hasn’t spiked to that level yet. And I hope it doesn’t. But unfortunately I have been in less higher level since the 26th of December – so, 17 days days now, which is unusual, for me… A severely sucks..

But I called my pain physician in Scarborough for an appointment on Monday & see my other pain doctor Tuesday. . With pain levels at a 5 or 6, I can deal, but only to a point.. after more than 2 weeks, I’ve hit that point..

Wish me luck!

The Spoon Theory

January 8, 2021

The Spoon Theory is a document written by Christine Miserandino. It is based on a conversation with a friend of hers who was trying to understand her chronic invisible illness. In Christine’s case, she has Lupus.

So, Christine tried to explain how her health limits her, but was having problems. She was at a diner eating some french fries, so she came up with equating a spoon to a unit of energy. For example 1 spoon for brushing your teeth, 2 spoons for taking out the trash, 3 spoons for a shower, 4 spoons to make dinner, etc.. We, with chronic health issues have a limited number of “spoons” or energy and when it’s gone it’s gone.

Check out this document because it is a very relatable way of explaining to most about chronic illness.. I’m not just talking Lupus, but other invisible medical conditions including Fibromyalgia, Ehlers-Danlos syndrome, Cystic Fibrosis, ME/CFS,

If the attachment is unavailable, please try the original at https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf