Archive for the ‘Fibromyalgia’ Category

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

 

No One Bothers

May 8, 2022

I’m 99% sure that no one I know actually reads this blog. I get no feedback from anyone outside of occasional comments from other WordPress bloggers. So I’m not even sure why I bother. I mean does anyone a tally read this or get anything from it?

And today was a shitty day..

Someone who I thought was a friend, turned on me this morning. I had told this person some personal stuff over the last several months and had explicitly said that it was personal and confidential and to keep it between us. Well this person turned around this morning, took what I said, twisted it, morphed it, changed it to their own liking and told it to someone else a fact. The only information that was correct were the people involved… Fortunately, this person did not realize that the person being told was actually another friend of mine which is why I found it quickly.

so needless to say I’ve been upset today. I have reached out to friends who I thought would be willing or able or even interested in supporting me. I tried to reach him out to my best friend but she’s busy this weekend and next weekend and the weekend after I tried to reset the Skype and seeing because he’s actually the other person who was referred to and he’s too tired too sore and needs a ride to the work in the morning so we can’t even hang out. I got blown off for the other ghost friend because they were just too busy. I don’t have a lot of friends that I can talk to

I think it’s just realization that’s got me more upset than what this person said & the fact that they broke my confidence.

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

Star Wars Day

May 4, 2022

May the 4th be with you.

Spread Awareness

May 1, 2022

May is Fibromyalgia Awareness Month

Tired? Me Too.

April 29, 2022

Don’t you also hate it when, despite knowing how badly you struggle with fatigue, someone who doesn’t is always delighted to tell you, “Yeah, I’m tired too?”

Me too, and I’ll explain why. I fully understand that everyone is entitled to feel tired, it’s a way of life. I also understand that everyone has different levels when it comes to how much tiredness their body can take. However, if you’re a person who is tired because they went to bed two hours before their alarm, or a person who is tired because they were binge-watching “Grey’s Anatomy” for two days solid without going to bed (I salute your dedication by the way, just saying!), then your tiredness level and my tiredness level aren’t really the same now, are they? In my opinion, people who sit there claiming that their tiredness from burning the candle at both ends is the same as tiredness from illness are pretty much insulting every single chronically ill person out there. Obviously with strangers, it’s slightly different as we can’t expect them to carry their crystal balls with them everywhere they go. But, when it comes to our loved ones who know our situations and who know how fatigue affects our minds and bodies, that’s when, personally, it makes it seem that my feelings are less worthy.

So, how is chronic illness tiredness different than “regular tiredness?” Well, seeing as everyone responds differently to fatigue, I will answer that question based on my own personal experience. Tiredness due to my multiple chronic illnesses is a level of fatigue which involves me sitting on the toilet crying my eyes out because I am so tired. It’s when I have hardly been able to move around my house due to lack of energy, yet I’m still sitting on the sofa yawning my head off, and an extreme bout of nausea because I am just so tired. It’s being unable to have a conversation because exhaustion has sucked all of the energy out of my body; therefore opening my mouth would use up a lot of the limited supply of energy I currently have to work with because, you guessed it, I am just so tired.

What are we so tired?.There’s several reasons. We can’t get to sleep cuz insomnia is common. We can’t stay asleep. And because our body is constantly fight with itself trying to deal with daily varying levels of pain and other symptoms of our illnesses.

Unlike healthy people, getting an early night doesn’t fix my problem. Doing less activity doesn’t fix my problem.Getting more sleep at nighttime doesn’t fix my problem (and that’s if I can even get to sleep!).Despite being absolutely mentally and physically exhausted, I can’t sleep, even though I would love to (and nearly do) fall asleep wherever my head lands.It’s debilitating. It’s exhausting. It comes with the territory of multiple chronic illnesses (fibromyalgia, chronic fatigue syndrome, etc.)

So if someone you know with chronic pain, especially moderate to severe chronic pain, and the say that they are tired. They are likely exhausted on, or more more likely off their feet unable to do much We don’t like to complain but when we do, it’s gotta be big.. So please don’t respond with a flippant “Me too!” What you are dealing with is quite possibly very different from what someone with chronic pain is dealing with.

Non-Scale Victories!

April 26, 2022

This is part of a series of various Non-Scale Victories. They are things I’ve noticed over the last few years as I’ve lost weight.

At The Gym – Part I

i have recently returned to the Durham YMCA fitness center. Mom & I going two years ago due to COVID and are going back I’m not doing the same activities as I used to for a few reasons.

The schedule and availability of classes is different and limited, a casualty of COVID. My own personal schedule activities has changed – the times I can go and the timing of what is available rarely mesh.

Arriba– The only organized activity is the Arriba class, the one where I step the the music because my coordination sucks. I do some of the step movements with ease cuz they are steps I used to do in my dance classes all those years ago. I rarely do the arm movements cuz I’m usually too focused on the stepping to get it right or even can’t been bothered to figure them out for the most part.

But here’s the thing, I’m able to do the class and not be completely exhausted afterwards. Yes I will feel sore afterwards, but it’s a good sore. Unfortunately, last week even tho I was taking it super easy, I inflamed my fibro even worse. But generally it’s an in improvement.

Swimmimg – Because I’m still waiting for Koolaid to finish healing again, I’m not allow to get him wet with chlorinated water, I can’t go into the pool. But for the one week I was able to go into the pool for a week, I did and was able to walk the lengths of the pool, back and forth. Yes taking breaks at each end, but I am slowly able to do it When I first started doing water, I would only treat water in the deep end of the pool. Given the high amount of fat in my body then, it wasn’t difficult, cuz fat floats. So a definite improvement.

Unfortunately, there is no Aquafit (bouncing to music in the water) that currently fit in my schedule. I hope it opens up soon..

Towels – I am a plus member at the Y and one of the perks is the towel service. When covid shut us down, I was unable to get the larger gym towels fully around my body, to say nothing about the smaller towels. When I returned I found that I could not only wrap the large towels around me with fabric to spare, I was able to do the same with the smaller bath towels! Wow!!

Stairs – To make it to the workout rooms and the upper studio for the yoga classes, I would have to climb a double height staircase. Sometimes, on bad days, I would take the elevator up. On really bad days, I wouldn’t even both going. Those days I could make it up the stairs, it was a massive struggle. I’d commonly stop at the landing and take a breath.

Now, to stop part way up at the landing means I’m having a bad day. But I can now climb the stairs all the way up. I didn’t notice I had done this until several visits in..

MRI’s Suck

April 22, 2022

Last Thursday & Friday (yes, Good Friday) I had an MRI both mornings. And it was not good.

For those who are unfamiliar with MRI’s, the machine is basically a tube, looking kinda like a doughnut. It has a bed attached to slide the patient in. How you go in & how far in you go, varies depending on what the scan is for. Mine are for my brain so I go in head first, as far in as my elbows . Alternatively, you can go in feet first and I have found out that they have a smaller sleeve kind of version for arms.

My fibro was flaring something fierce and had been since the Sunday prior. I know the MRI machine dors jostle to adjust for the scans, but I’ve never felt like this! Every time the bed was adjusted it was a fast start & a fast stop immediately after. It was very jarring on the body. The fibro pain was excruciating! Add the pain in my left arm from the scar tissue breaking up from my RMT (more coming), and I was almost out for f my mind. And I couldn’t even move my arms because that could cause the scan to blur which could lead to to inconclusive results and a repeat scan.

Add to this situation my claustrophobia, a fear of small spaces. On Thursday, the only thing that has kept me sane and kept me somewhat still, was slow deep breaths through the entire time. Even through each and every shift in the bed. I’m not sure I was able to keep myself motionless sufficently for a clear enough image. On Friday, I was smarter and remembered to take the lorazepam I had so I could quiet my mind while in the machine. That helped keep me more calm and helped relax my muscles. This made my fibro chill out and actually helped decrease the pain. I also was smart and lay my arms in a more relaxed and comfortable position before going in. The movement of the bed adjusting was still very jarring on the body, but with the breathing I was able to cope better.

When I got home, I went straight to bed to catch up on sleep and the lorazepam was really starting to knocking me out.

Results are still pending.

Yes, I Tried That.

April 15, 2022

I know you’re trying to be helpful but your suggestions of yoga or CBD or massage or med XYZ, but I’ve tried it all already..

Medications.

In my case, I have tried all the meds. The only one I haven’t tried is one that’s available in the States but not in approved for use here in Canada. It’s called Sabella.. Specific medications for fibro include lyrica and gabapentin did not help and in fact, the gabapentin made me significantly worse – not good

I’ve been on any number of narcotic medications, starting at 20 Tylenol 3’s a month (that was a joke, way too insignificant) to high dosages of codeine contin & Fentanyl.. Fortunately, those were not at the same time.

I’ve also been on several muscle relaxing medications. Unfortunately, the one that works the absolute best is not covered my government benefits, but the one that is covered is adequate unlike many others.

i have been on anti-inflammatoriez for many many years due to Endo then the arthritis. Unfortunately, it seems to have started causing increased bruising in the last year or longer. As a result, my GP has taken me off my regular double daily dose. I now take an otc anti-inflammatory “as needed. “

I have actually been on various forms of medical marijuana and just as I’m finding the perfect balance to help, I start having issues, problems that might be due to cannabis products. We are still trying to figure out the cause because even tho I’m off *all* marijuana products, synthetics oils and otherwise, I’m still having regular issues. So the docs got no idea what’s going on. Read more here.

Exercise!

You’re kidding me, right? Do you know how hard it is to exercise when your body is screaming at you? Even Yoga.. Or swimming.. Or walking.. Even these simple every day activities, when you have severe Fibromyalgia can be unbelievably difficult. While it can help some it does impact others in a negative way, deteriorating their health.. I am lucky. I made a decision 10 years ago when I hit 303lbs on the scale at my doctor’s office. So I did start the long and painful, excruciating process of doing a smidge more activity, very slowly increasing what I was doing.

So yes, now I can go swimming.. well, walk in the pool, lol.. Before COVID I could participate in an aquafit class, but sometimes no more than bobbing in the water but I made the effort to be there.

Yes I can walk further, but that happened with great encouragement from my sister. Over the last six years, we would get together weekly to walk. On some days I can’t walk very far, but I try. This encouragement has led us to talking and we have become very good friends now. An excellent side bonus!

Yoga can still be very painful, depending on the speed, the instructor, the modifications, the positions we use and the flows (God I hate flows). I do have favourite positions like bridge & pidgeon that surprise people. But it took me 10 years to get to this point and it can still very much hurt.

Was at the gym, stepping around in an Arriba class earlier this week and crashed out that night… Barely made it to the time I take my night meds. Even took extra early pain meds to help dampen the pain so I could sleep.

The advantage of me having the gym membership at my local YMCA is the plus membership I fork out the extra for the plus membership because it includes additional99lounge, steam room & the infamous hot tub. The hot tub is my life saver. Can’t wait for my tat to finish healing so I can send all the way in to my neck

Diet.

These include gluten free, Keto, vegetarian, vegan, anti-inflammatory, Noom, high protein, Mediterranean, Weight watchers, diabetic, South Beach, intermittent fasting, paleo, raw foods, Aktins, etc… While some of these would works for some, none of these really helped me or could help me. Between complexity, my will power (or lack thereof), cravings and food sensitivities, none of these actually worked for me. My choice of “diet” is moderation and avoiding a lot of prepackaged foods. The closest to this would probably be the weight watchers program but I found their point system to be complicated especially with the cognitive issues with my Fibro. This adaptation has also helped me lose weight. So I still do drink Coke, probably still too much, but significantly less. I’ve almost 100% restricted out the xanthan gum, guar gum and carrageenan additives as they typically cause my IBS to flare which would start putting me in starvation mode, which makes maintaining, let alone losing weight even more difficult. Not to mention get some of these diets require me to eat foods with these additives in them.

I do treat myself every once in a while with a bowl of sorbet. Very infrequent use of these chemicals it is permitted because my body can tolerate them in very very small doses.

Alternative treatments

We’re talking massage, acupuncture, physio, osteopathy, chiro, etc. Physiotherapy does not really help the fibro other than adjusting exercises that could be beneficial to help increase strength, endurance or flexibility. In many cases this does not improve the pain due to fiibro in patients.

While chiropractic medicine helps some with fibro, it actually made my situation significantly worse.

Osteopath does help but it mostly treats my other conditions like post concussion syndrome, migraines or endometriosis and general health and wellness. Does not help fibromyalgia specifically that I know of.

Acupuncture does absolutely nothing for me or any of my medical conditions. I have tried it a number of occasions and hasn’t worked with any of the practitioners. One lady treated my Endo & gave me migraines. Any further attempts for any other issues have resulted in absolutely not relief

Massage can wonderful. If you get an appropriate RMT who understands fibromyalgia and will listen to you & adjust when you say “Ow!” it can help. Unfortunately it also tends to be very short-term

Injections.

For 15 years now, give or take, I have been getting injections of a medication called Marcaine which is a sibling medication to lidocaine. These I get with my pain physician who was initially in Scarborough and is now in Oshawa. These shots have helped over the years for anywhere between 4 days and 4+ weeks depending on the level of my pain

In the winter I also get epidurals up to three times each winter depending on my pain levels at that time. This tends to treat my osteoarthritis in my lower back, not the fibro pain. In doing that however, it reduces the OA pain, making the fibro pain more manageable.

lidocaine infusion. This is the one last treatment I know of. This is when they attach an IV and add lidocaine to your blood system. This is my next course of action for treatment. I have an ECG scheduled for next week so that I can access this treatment. Once it’s been verified that my heart is ok, I can and will book the treatment. I will let you know how it went.

Thank You, But..

Thank you for your concern for me and your helpful intentions, I’ve been dealing with this a long. Thank you for your pearls of wisdom persistent unsolicited advice is actually inconsiderate & thoughtless. I *do* know my body & I do know what works for me. It comes across to those of use dealing with these issues like we don’t know anything about my fibro and that you know more than me & my doctor. Honestly, in most cases, I do know more than my doctor. So please stop making suggestions cuz what worked for your friend’s cousin, Sally, I have already tried. or that your Dad’s friend’s daughter was cured, because it can’t be. I don’t need anyone telling me how other people’s treatment going to work for me because her fibro is not my fibro.

So stop I don’t need or want to hear it.