Posts Tagged ‘Fibromyalgia’

One Upmanship

November 22, 2022

I read an article recently entitled Why Is My Friend with Fibromyalgia Trying to One-Up Me? and I could totally relate.

I have several friends who are fellow fibromites, women with fibromyalgia, each to varying degrees and varying function levels. I can speak about these issues with them, comparing yes, but also supporting each other. But I did have one in particular that would always work her pain in the conversation and make it sound worse than anyone else’s could possibly be.

This lady who I am no longer friends with works full time because “she can’t afford not to.” While when her & hubby constantly go out for dinner, go to concerts and socialize, and spend money lavishly, it’s no wonder she can’t afford it. But I’m curious as to how bad her pain really is if she works full-time and does all this other stuff. (Yes, I know that sounds a little judgey, but she makes me angry with this behaviour of hers)

She would berate me for not working, for taking disability. I am on both provincial and federal disability supports. Admittedly, I have in recent years, worked the federal, provincial and municipal elections. This is a single day, paid position. Yes, it is a long day. She thinks because I can do those one-offs, I should be able to work regularly. After those single days of work, I’m toast for up to three, four days later, even have been almost bedridden the first day after. How would I be able to work a regular job if I’m in too much pain & too exhausted after a day of work to even do the very basic daily activities of living?

Even tho we were good friends, she never saw me when I was feeling poor, and didn’t even talk much when I was, at one point, bedridden. So, while she is comparing, she’s not accurately comparing what my true issues are and even then, most of them are different from hers.

She doesn’t really understand that it is not a competition..

I also addressed this topic in a previous post, My fibro is not her fibro.

Being Sick with Fibro

October 25, 2022

So i caught a bug this weekend. Stuffy nose, sore throat, head ache, body aches . Never did take my temperature.. & I noticed something .

The Fibro pain isn’t typically everywhere at once.. it’s usually once place or another, not everywhere.. But you add the body aches & every is now hurting.. yuck.

Crash and Burn II

August 16, 2022

So I overdid it on the Civic holiday weekend and crashed as a result. I’ve been in a flare ever since.. This is a continuation of Crash and Burn.

As I said, Monday was about the same, pain-wise & still working on my sister’s project, but finally got a decent amount of work done on with this project. I think there was no improvement on Monday because I went to soccer.

Tuesday morning showed some more small improvement. That afternoon was my appointment with Dr Sithaparanathan at Neupath Pain Clinic (formerly CPM). Got my full shots & she gave me big trouble for over doing it. She asked my why I overdid it cuz she knows I’m pretty in tune with my body & it’s pain. I had lidocaine infusion on the Tuesday prior & the pain relief was still in effect which is why I didn’t feel any pending problems I guess the impact work off Sunday night/Monday morning while I slept.

So Tuesday afternoon was better, and was spent again at my sister’s.

I noticed significant improvement in weight bearing on Wednesday. The week prior, I was unable to pick up the sewing machine, even just to lift it from the table My brother-in-law had to come over and pick it up to take it to my sister’s. Today, however, I was running errands, one of which was to get the light bulb changed which required me to take the machine with me. I was able to carry it now. It was a bit of a struggle, but I was able to do it, take it out to the car. Yay!


A set of ushions for my sister's outdoor love seat, one of you have been working on

As you can see, we are getting it done & here’s a view of one of her love seats in case I didn’t share before. This just shows the look we are going for with this completed loveseat.


I got some of my own stuff done that day cuz I was not at my sister’s doing stuff, tho several of my errands were related.

At this point, I was still having trouble getting moving in the mornings – usually afternoons right now. Pain levels are still higher when I wake and still having problems getting decent sleep Sunday – 6hrs, Monday – 6 hr, Tuesday after my shots was good with almost 7½, Thursday – 5¾hr, Friday – 4hrs.

While I’m *in* bed by midnight, I am not tired til at least 2am, some times up until 4am. There are also where I wake in the middle of the night wide awake. None of this helps my sleep. Thursday was bad with a combination of both. I was in bed shortly before 1am attempting to sleep. According to my Fitbit, I dozed off at 3:30am & up at almost 5, wide awake and unable to get back to sleep until 8 but even then for only 3 hours before being wide awake. And people wonder why I am completely exhausted some days.

So, overall, pain got better and better, but I was still getting exhausted each day.

i also began to have problems with my ankle &: my knee. Being on vacation, my knee has been fine.. was even good on Sunday after being off seeing since Thursday. However, being Wednesday of my week off, I’m pretty sure the peddle usage has aggravated my gout. I’m icing it & tossing it in my tensor when I’m doing any significant walking.

Let’s hope, with us not starting back up after the long weekend that it starts to heal up on its own. 🙂

Crash & Burn

August 12, 2022

The August long weekend was spent at home, the first time in several years, even doing covid. Typically I would be up at bff’s cottage, but she wanted the weekend starting her vacation to just be her & hubby..

Instead, I spent it in the GTA. Thursday night I went walking with my friend Tracy as my sister was at the cottage on vacation. We went 5.18 km according to my fitbit. Pace was 7.8 km/hr which is pretty good. Average speed for someone our age is about 4.5km/hr. So a good clip.

Friday was a quiet day, but Saturday started with my mom having a hissy fit about all my stuff in their space, so I spent the afternoon hauling any of my personal belongings & any cub supplies I had from the garage and into the backyard , either to my indoor space or my father’s shed. Between 2 & 6:30, my fit bit recognized three instance of exercise. 2 were classified as walks, but one was registered as sport. This tells you how hard I was working. That evening I went out to a bar with friends. Some were new to our group, so we had some ice breaker activities & lots of chat, getting to know new people. Then off to the dance floor until I left shortly before 1am.

Sunday registered a walk on my fit bit at 12 and I don’t remember what I was doing.. likely at noon I’m still dragging my ass outta bed,, esp when I wasn’t home until 2.. ( I realized layer it was 12 midnight & I was dancing).. I then took the pup to the dog park and we took the longer path. I did yoga for about a half hour & change. *Then* I went to soccer & I was exhausted by the end.

I woke Monday morning, thinking “Hmm.. I’m not too bad.” Then I moved. Boy was I wrong! 8/10, easy, & pure fibro pain. Not alot anyone can do anything for that.. Plus ongoing muscle cramps in my legs on & off until I got some magnesium on Wednesday, which helped..

So I spent the holiday Monday in bed, same with Tuesday & Wednesday other than a painfully slow walk, barely 1km/hr. I was however feeling a bit better each day..

Thursday was spent at my sister’s hanging out at her pool & started working on a project she wanted to do this month. Got in a couple of short walks, minimally faster than the days before.

Saturday & Sunday we also spent working on the project with multiple pool breaks .. I did go out with friends on Saturday which was nice. Then I again went to soccer on Sunday – am I a glutton for punishment or what?

So now we are one week later, pain levels still jumping at a 4-6/10.. depending on the time of day.. Sunday afternoon I was at a 4.. Probably why I went to soccer.

Monday was about the same, pain-wise & still working on my sister’s project, but finally got a decent amount of work done on with this project.

to be continued…

Tattoos with Fibro

July 5, 2022

I’ve not had any tattoos prior to this year, so I don’t know what it’s like to have any ink done with a body that does not have pain. Honestly because I’ve been dealing with chronic pain issues since adolescent, I don’t think I could have even had the opportunity to do so.

I have 2 pieces done thus far. They are both rewards for my weight loss.

On my upper left arm, a little bigger than I was expecting, is my Scouter Koolaid tattoo I was given the name Koolaid by a patrol of scouts in my early 20s. So, basically is the scouting fleur-de-lis with the Koolaid guy super imposed on top. With the cub sign shown in his right hand.

This tattoo was actually quite painful. I had a hard time tolerating the pain. I was gritting my teeth the entire time but I persisted because I knew it was temporary pain and would eventually stop

On the top of the backside of my right shoulder, I have a butterfly. This butterfly is similar in style to a monarch butterfly but instead of the orange, black and white, mine is coloured inshades of purple and white. It is unique & really cool in that it is almost 3D in nature and you can see the shadow of it behind the butterfly. The text surrounding the butterfly reads “Fibromyalgia Awareness”.

This tattoo was significantly easier despite having more chronic pain issues in the area. For the majority of the work I was able to just sit and relax as he drew on the back of my shoulder. In fact, the upper lettering where I says “Fibromyalgia”, that actually tickled. Go figure There was one spot however that was a problem. Near the end of the work, the artist was adding white for highlights, he hit a flat mole on my back That sent a single big sharp jolt of pain through me. But that was the only pain I had from that one.

The artist, given that these two were my very first two and done right one after the other, he was not only surprised but suitably impressed that I only jumped that one single time. Apparently that is not the norm.

I do have one final one planned as my final reward for reaching & maintaining my goal weight. That one is going to be a collection of roses on my bum/ hip/ lower back in shades of bright pink & purple, maybe blue. The text to accompany that tat is “Neon Rose”, the online alias I have used since I was 16, so long long time ago.

When Lilly passes, I will be getting her paw print on me aswell in commemoration.

Cub Camp with Fibro – First camp after COVID

June 10, 2022

This weekend is Cuboree, which is our first in person overnight camp since February 2020. This means most of our kids have never camped in-person as a Cub. Of 21 youth, we have 2 who have.

Normally each group would be running independently with their own food and kitchen and supplies and such. Fortunately the Cuboree Committee decided to offer a meal plan The Scouters who are in the participating groups have planned the menu, supplies, equipment & food. The kitchen is being organized & run by council level Scouters who have no group . From us, they only require one Scouter from our group to help with food prep. Not me! Yay!

Normally for camp we would plan the menu, organize our equipment, shop for food and supplies as well as having food preparation done with the youth. We have, fortunately, none of that this year. We’ve been flying by the seat of our pants this year’s so I just gotta say Thank God The most prevalent leaders both have Fibromyalgia & the related cognitive issues so it’s been an interesting year.

& its supposed to rain on Saturday. *Sigh*

my apologies if this doesn’t make sence cuz it’s a busy week & my brain is now fried & I still gotta run the camp!

May 12th

May 12, 2022

Today is May 12th..

Awareness Ribbons

On this day we try to spread awareness of three debilitating and chronic medical conditions. I have all three of these conditions & I have to say, they all suck.

FMS – Fibromyalgia Syndrome

CFS/ME – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

MCS – Multiple Chemical Sensitivities

May 12th is Coming

May 10, 2022

Each year on May 12th, we observe International Fibromyalgia Awareness Day. Globally, we also acknowledge Awareness for Chronic Immunological and Neurological Diseases (CIND), typically considered Chronic Fatigue Syndrome/ Myalgic
Encephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS). This does include other conditions such as Multiple Sclerosis, Addison’s Disease, Lupus, Chronic Regional Pain Syndrome (CPRS), & Irritable Bowel Syndrome to name a few.

Awareness Ribbons

Fibromyalgia affects 2-4% of the population. For context that’s up to 13 million of the US population & 1.5 million of the Canadian population  It is a musculoskeletal syndrome and causes a variety of symptoms. Common to all Fibromites is chronic widespread pain and debilitating fatigue. Additional symptoms can include:

  • anxiety
  • depression
  • migraines/chronic headaches
  • irritable bowel syndrome
  • irritable bladder
  • insomnia
  • hypersensitivity to cold/hot
  • swelling
  • fibro fog (inability to concentrate/focus)
  • difficulty remembering
  • numbness
  • stiffness
  • decreased energy
  • noise, light and odor sensitivity
  • skin sensitivity
  • See a more extensive list here

Symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. While there is no cure for fibromyalgia, a variety of treatments and therapies focus on reducing the amount and frequency of pain. They also aim to improve sleep. Therapies such as exercise, massage, acupuncture, and chiropractic care aim to manage symptoms without pharmacological interventions. Prescriptions manage pain, improve sleep, and combat depression, too.

Chronic Fatigue Syndrome/ Myalgic
Encephalomyelitis (CFS/ME)
affects ¼-¾ of 1% of the population For context that is up to 2.5 million of the US population & up to 300,000 of the Canadian population. It is a serious, long-term illness that affects multiple body systems. Symptoms of CFSME are severe fatigue, and sleep issues. Additional symptoms commonly include: post-exertional malaise (PEM), problems with thinking and concentrating, pain, and dizziness. Like fibromyalgia, symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. There is no cure and no real recommended treatment plans . Individual symptoms may be treated or managed and like Fibromyalgia, they may provide relief for some but not others. Coping strategies, like learning new ways to manage activity, may also be helpful in some.

Multiple Chemical Sensitivities (MCS) is a syndrome resulting from a reaction to environmental factors such as tobacco smoke, auto exhaust, perfume, insecticide, new carpet, chlorine, food chemicals an preservatives. Symptoms can vary extensively and can include:

  • Headache
  • Fatigue
  • Dizziness
  • Nausea
  • Congestion
  • Itching / Rash or hives
  • Sneezing
  • Sore throat
  • Chest Pain
  • Changes in heart rhythm
  • Breathing problems
  • Muscle pain and/ot stiffness
  • Diarrhea / constipation
  • Bloating & gas
  • Confusion
  • Trouble concentrating
  • Memory problem
  • Mood changes

Treatment typically is to avoid the irritant

AWARENESS DAY HISTORY

Fibromyalgia, CFSME, MCS Awareness Day was first observed in North America in 1992 in honour of the birthday of Florence Nightingale.

Why Florence Nightingale?

During in the Crimean War on the 1850’s with the English army, she established the training of women, organizing them to help care for the wounded soldiers, establishing the basis of modern nursing.

During the war while working on the front lines, Florence suffered a traumatic collapse which resulted in most of her life to be in debilitating chronic pain, often unable to walk or leave her bed. Documentation suggests her symptoms to be similar to fibromyalgia and chronic fatigue. 

SPREAD AWARENESS

To help spread Awareness of Fibromyalgia and these other conditions please use the following hashtags in your social media:

  • #May12th
  • #FibromyalgiaAwarenessDay
  • #CFSMEAwarenessDay
  • #MCSAwarenessDay

As the month of May is also dedicated to Fibromyalgia Awareness you can use these additional hashtags

  • #FibromyalgiaAwareness
  • #FibromyalgiaAwarenessMonth

 

Fibromyalgia Awareness Images

May 6, 2022

Some of these image are ones I’ve created, and they are marked. Some are not please give credit & refer to this blog at http://www.KelliAEllis.com

I created this image based on other images. if you use this image, please give credit & refer to http://www.KelliAEllis.com TY
May is Fibromyalgia Awareness Month
I created this image based on other images. if you use this image, please give credit & refer to http://www.KelliAEllis.com TY
This was made by a friend for me. If you use this, please give credit & refer to http://www.KelliAEllis.com. TY

Spread Awareness

May 1, 2022

May is Fibromyalgia Awareness Month