Archive for August, 2021

Food Choices with Fibro III

August 31, 2021

Aspartame is synthetic sweetener, also recognized by the brand names Equal and NutraSweet, is used to sweeten some frozen desserts, beverages, yogurt, and some other foods without adding calories.

Artificial Sweeteners including Equal & Nutraseeet

There have been a case information connecting aspartame to fibro. In one of these, a fifty year old lady who had been living with fibro for ten years experienced development of her painful symptoms when she vacationed in overseas and didn’t use aspartame. Though, her symptoms reemerged when she got back home and started aspartame use again. In the other occasion, a forty-five year old man found that his hand, wrist, cervical spine, and forearm pain stopped when he stopped aspartame use.More study is required to approve these conclusions, however it might be a wise idea to avoid aspartame if you have fibromyalgia.

Try using a small amount of natural sugar instead. Apparently, you can even add beets to some dishes for a hint of mellifluousness.

If you have to use synthetic sweeteners, try using sucralose, which is derived from calorie and sugar-free.

Personally, i can not stand the taste of the stuff

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..

Happy Birthday To Me!

August 27, 2021
Happy 48th!

Its not often my blog post day & my birthday happen on the same day!

Food Choices with Fibro II

August 24, 2021

MSG & Sodium Nitrate are used as flavor enhancers and preservatives in many handled foods, for instance preserved meats and sauces. They are full of salt as well, which can worsen pain or inflammation in some fibro patients.

Fibromites. To reduce the effect of nitrites and MSG on your fibro, avoid prepackaged foods as much as possible and emphasize on whole foods like brown rice, fish, and lentils.

“STOP” – Doctor’s Orders

August 20, 2021

So I was camping on the weekend with a gentleman friend and one night our mattress deflated so needless to say I didn’t get a good night’s sleep that night. As a result pain levels are up. But pain levels were also up a week prior and the week prior to that.

As many of you know I am a cub scout leader. Between my two groups I have six senior Cubs, called Howlers, who are going up to Scouts in September. Five of these boys are getting the Cub top section award..

2 months ago, when we finally got permission to Camp hello I suggested to Raksha that would take all the senior Cubs and take them on a camp, teaching them how to do a scout camp. Well Raksha is also currently a scout leader, but she has not done a scout section camp because of restrictions due to covid. But I have several years of troop level camping under my belt so I know what they should and should not be doing…

On of my Howler at day camp a few weeks back.

About a month ago, the Scouts and venturers expressed an interest in camping so I’m not sure how it happened but suddenly my howler Camp became a Howler / Scout / Vent camp. While I was annoyed about it kind of getting taken over from the original intent I figured that the existing older Scouts can teach the Howlers how to Camp as Scouts..

i was actually looking forward to camping with the kids.

What does one have to do with my doctor? Everything.

When my pain was creeping up, I wasn’t doing anything to rest. After spiking again last weekend, I had an appointment with my pain physician, a regularly scheduled appointment. 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 camping”.

Well, she was right.. I kept my activity level up to help finish prepping for camp.. & today, I’m done.

I could not even help shift a canoe last night. Not lift, just shift. & Today I woke in active fibromyalgia pain. My leggs were killing me.

No! Stop!! Do not Camp. Do not pass Go. Do not collect $200

So my Doctor said no, & I’m glad she did!

Food Choices with Fibro – Intro

August 17, 2021

This is a series approximately 10 weeks long, looking at food choices.

It’s been reported that beyond OA, fibromyalgia is the most common musculoskeletal conditions. Over 12 million Americans have been diagnosed with fibromyalgia that’s about 4%.

Sticking to a personalized fibromyalgia diet is one of the ways you can manage the pain and get more out of life.

Most people with FM know the necessity of taking it easy when pain flares. Many, however do not realize how much your food choices impact your fibro symptoms. Because it not studied extensively there is not much data on have exactly particular food ingredients and items impacts us. In a recent nutritive article published in Rheumatology International, small study of 101 FM patients determined for this group, that 7% had food intolerance or allergies, & 30% had made changes in their diet to help their situation.

While there is no particular diet suggested for FM treatment, some Fibromites have noticed a correlation between poor food selections & fibro symptoms. One nutritionist suggested that Fibromites seem to have excessive level of a dependence on ‘luxury’ foods (foods easy to prepare or buy premade) due to the inability to prepare & eat health choices on a regular basis Unfortunately, for many it leads to weight gain which leads to being overweight which can aggravate many fibro symptoms.

“Luxury Foods”are ones you can make fast or just pick up. . The examples above: Tim Hortons Donuts, KD, Chef Boarder, McDonald’s, KFC, Little Cesar’s..

Living with fibromyalgia, your food selections could be making your pain or other symptoms worse. As each of us deals with fibro differently, there is no one-size-fits-all diet, but making changes can help!

Come back next week for more!

It Finally Happened Again

August 13, 2021

So on Friday or late Thursday my sciatica flared up, because of my osteoarthritis… And with Cub camp on Saturday there is no way I would have been able to function.

So I went to the ER, the first time since covid started, and possibly even the first time in 2 years…

Previously when I went to Lakeridge health Oshawa I was expecting compassion, respect and dignity. I’m sure if you go back far enough you will see posts of getting policy changed in the Scarborough hospitals.

On Friday the first thing the doctor said to me was “So I hear you can’t afford Toradol?”” well that’s professional. He agrees to give me some Toradol after I saw I don’t want narcotics.. Toradol in an anti-inflammatory..

Every other time I’ve gone to the emergency department in the hospital, but Centenary, Scarborough Gen, or Lakeridge Health Oshawa I have been given an injection of 30 mg of Toradol. Frequently I am also given another 30 mg tablet to take it home later. And occasionally the doctors do offer me a muscle relaxer as well

All I got on Friday for a chronic pain flare bad enough for me to drag my ass to an emergency department in a pandemic was 10mg of Toradol. There is absolutely no way that someone with chronic pain, specifically in a flare with pain spiking, the 10 f****** mg of Toradol is going to do anything.

The one thing it did, was put me in tears.

I ended overdosing on naproxen at home just to get enough relief so that I could work with my Cub Scouts the next day.


Before some dough head makes a comment about me being a Scouter while having chronic pain. If I didn’t do anything because I had pain I wouldn’t be doing anything at all – I’d be a freaking hermit. And I’m very much enjoy working with the kids to allow that.

And before someone else says let somebody else run the meeting, I was the Scouter in Charge on Saturday. I was the one who actually knew exactly what we were doing, leading several of the activities & the only one familiar enough with the area to run a hike… I am also the one who, if something happened, I would be the one responsible whether I was there or not. So you damn straight I’m going to make it up to the day.

Are you getting enough sleep?

August 10, 2021

How much sleep do you really need? In general, most adults need about 7 hours of sleep per night. Children and adolescents need even more – around 9 or 10 hours per night. However, the amount of sleep people need varies widely, ranging from 5 to 10 hours per night. The important thing is to find out how much sleep you need to stay healthy and alert, and then try to get this amount of sleep each night.

People like me, with fibromyalgia have this problem. We require more sleep & rest than the average person.

At my worst I was in bed by midnight, with several extended & cognitively aware wakeup. I’d wake at noon to my alarm. I’d have a nap as well between 1 & 4 hours. I was still exhausted & non-functional.. Currently I am getting about 6ish actual hours of sleep at night as per my fitbit. I generally wake on my own, but use a alarm of I need to be somewhere at a specific time. I, generally, no longer take naps.

I am still exhausted, but because my health is better overall, I am… functional.

The right amount of sleep is the amount that lets you wake up feeling refreshed and well. You may be able to function on the amount of sleep you are getting now, but it still may not be enough for you to reach your full potential. Here’s how to tell if you’re not getting enough sleep:

  • You need an alarm clock to wake up.
  • You sleep longer and better on weekends.
  • You have trouble getting out of bed in the morning.
  • You feel tired during the day.
  • You have bags or dark circles under your eyes.
  • You doze off while sitting in a public place, such as a movie theatre or meeting.
  • You get drowsy while driving.
  • You have trouble concentrating.
  • You have early morning headaches.

I’m sure many fibromites have several of these signs of poor sleep. I laugh at the suggestion of waking feeling refreshed and well – Doesn’t happen much for us..

These are the issues *I* experience:

  • I still need an alarm clock on occassion, for something important
  • I have trouble getting out of bed feeling sluggish & pain spikes just after I wake.
  • I frequently feel tired during the day.
  • I’ve bags and dark circles under my eyes.
  • I don’t usually doze off while sitting in a public place but it has happened.
  • I have only been excessive drowsy while driving three times.
  • I have trouble concentrating, but this could be fibro fog.

Like the last point, all of these signs could be caused by Fibromyalgia or it could be caused by poor sleep. It is very difficult to differentiate as signs & symptoms are very similar as are the forms of treatment are also very similar.

If you notice any of these signs, you may not be getting enough sleep. Try to gradually increase the amount of sleep you get each night until you find the right amount – you’ll know that you’ve got it when these signs start to go away. If you haven’t been getting enough sleep for a long time, it may take a while to recover. If you’ve tried everything and still have trouble getting a good night’s sleep, talk to your doctor. You may have a sleep disorder.

I agree, if this is a persistent & reoccuring problem, it might be a good idea to see your GP & get a sleep study done to see what’s up in your actual sleep.. I’ll try & post about my sleep study experiences.



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I pilfered this from PC Health… but all material copyright of MediResource Inc. 1996 – 2021.  Original Source :  www.medbroadcast.com/healthfeature/gethealthfeature/Sleep-Getting-a-Good-Nights-Worth

Camping with Fibro

August 6, 2021

Yes, I can go camping with Fibro. It borders on Glamping, but I’m still in the outdoors, in my tent & cooking out on a stove. And yes, I have gone camping twice this summer, so far with at least one more weekend planned

I have had to make many modifications to how I can camp.

I am no longer able to go backpacking. I would not be able to handle the weight I’d have to carry mile after mile.. In my teens, I had gone up to the back country of Algonquin, spending several days out in the wilds with friends. That’s not happening anymore. The mind is willing, but the body’s not even gonna consider it! Lol.

I have had to upgrade from a 2-person hiking tent to a a 4-person, 3-season tent. I can no longer sleep on the ground, on thin mats, bubble pads or wood flooring like at Camp Adelaide. I now have a double high queen size air mattress that I use. I have a fitted sheet on it & depending on the weather 1-2 sleeping bags & my Lilly blanket. I also have a pillow that I use exclusively for camping.

My camp setup for virtual Cuboree

I have borrowed a camp stove from one of my cub packs (yes, the pack knows). It connects to the smaller green propane tanks, not a big 20lber. It is not one that requires you to prime it, cuz I find that one difficult. But also does use the huge tanks either so I don’t have to move that either. In addition I recently purchased my own stove used. I still need to clean it & test it tho.

I can light a propane lantern both on the green tanks & the big white ones. I’m lazy & cheap so I only use a small battery-operated portable one & my handy dandy flashlight. Blessed with good night sight, I don’t usually need a light source to sneak off to the bathroom at 2 in the morning.

I recently purchased an small indoor/outdoor table to use camping & at in-person & outdoor cub events. I am not sitting on the ground to cook or prep. With COVID, we can not share the picnic table with others right now, so I need my own table.

As some of y’all know, I have a long sleep cycle, and I’m sure your curious how I do that camping. Easy: ear plugs, & sleep mask. With my Cubs, I have our SiTs do breakfast, but otherwise, I suck it up. I know I will crash out during the week, but it is worth it.

My pink sleep mask (I have 3) & a pair is standard orange ear plugs.

To sit, I bring lawn chairs. My butt is too big & my balance to horrible to be able to get in an actual camp chair, handmade or store bought. Add to the fact that they are barely off the ground, with some I’d have to get on the ground to get up! Lol

This is what my current campfire chair looks like, but with thicker wood .. Made it in Rover Scouts.

Swimming? Heaven! The water is a blessing. Yes, not everywhere has water, but I camp at my bff’s cottage so there’s water there. Our cottage is also on a lake.. I enjoy the cool lake as it’s refreshing, especially on warm day.

I make sure I take all my medications, as prescribed at the appropriate time. I also bring sufficient extra medications, especially the PRN meds cuz you never know when you’ll need them. In addition to the regular meds I also bring my A535 & the Voltaran cuz again, you never know.

Are there other aspects of camping that I’m missing? Let me know & I will tell you how I deal with them!

Anti-Mask & Anti-Vax at the Salon

August 3, 2021

Recently, i posted about my hairdresser & how my appointments with her are relaxing.

Well, on the Saturday prior, my bff got her hair done (same stylist). Apparently, the tension could be cut with a knife.

Monique had commented away from work that she does not agree with anti-maskers or anti-vaxers. Her co-workers did not appreciate it considering that all the rest of the staff in the salon were unvaccinated and had no plans to get vaccinated. They also we’re not wearing masks in this place of business. So this led to a very uncomfortable silence with her co-workers.

I am Against anti-maskers & anti-vaxers. They are putting us *all* at risk.

Fortunately between that appointment and mine she was able to find a new hairdressing home. Her new salon that she is at is much more bright, much more open, much more space for social distancing and each stylist had two chairs so that they could alternate so that they always had a clean chair available.

So while I still support Monique, I no longer support Heads Up Hair Salon in Oshawa. My business has switched to Bounce Salon and Spa in Courtice

i am glad my stylist is more concerned about her clients & their safety over a paycheck.