Yes, I Tried That.

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.

Socializing While In Pain

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?

RLS then Exercise.. Uh oh!!!

On Friday last week, I posted about issues with my RLS, but that wasn’t the end of it.

As I said, on Wednesday night I was having problems getting to sleep, big problems due to restless leg syndrome in all four limbs – very rare. So I went on the treadmill for 20 minutes then snuggled nicely into bed.

^{Walking on a treadmill can help burn off the restless feeling when my RLS flares.}

Thursday morning, I woke up & my legs had felt like I’d run before full marathon with zero prep the day before, instead of just 20 minutes.

So I started with the pain meds, the anti-inflammatories and the muscle relaxers that I do every day when I get up. The unexpected pain did eventually start to lessen more.

But Thursday nights are one of my cub nights with my third years, howlers from both packs. We’re helping them work on their Seeonee Award.

Fortunately, when this meeting was planned we weren’t aware if we were going to be in person or not so we planned a virtual meeting. The kids wanted to play Drawsaurus which is an online version of Pictionary. Lots of fun!

^{Drawsaurus is an online version of Pictionary! The boys love it!}

So I didn’t have to do anything. I did not have to prep much, other than just set up the game which took about 30 seconds. We played 4-5 rounds I believe. We could do this because it was a smaller group, just the four of them tonight.

So as we started we are having fun and I’m relaxing. Silly me, I text my sister and ask her if she wants to go walking tonight after my meeting, which we normally do on Thursdays.. Of course she responded in the affirmative.

I was actually starting to feel better at the end of the meeting – Yay!!

I make it to my sister’s for 9:00pm and we leave shortly thereafter walking the dogs. Our pups were both very well behaved tonight, strangely enough – they usually do not start calm & maintain that for most of the walk.

So our walk was uneventful and we walked the neighborhood just south west of us. There was nothing extraordinary about our walk in the way of physical exertion.

There was a coyote but that’s a different story altogether.

One thing about that walk however was the length. It was almost 11:00pm by the time we got back to her house. In steps that is over 10,000 and about 5½ miles (no clue why my Fitbit is still in miles)

^{God Help Me! Five miles & 11,000 steps for one casual walk.}

So take a guess how I felt afterwards. Horrible! My leggs were very painful. I’m thinking a 6 or 7 out of 10 on my pain scale..

I had a shower and the hot water was lovely- everything seemed to relax under the hot spray. Unfortunately it would return when the heat got moved to another spot. I think I need to go snorkeling in a hot tub! LOL..

So I medicated again, including my MMJ…

Guess how I felt the next day…

---

I was actually expecting to be in a flare the next morning… Surprisingly, my Leggs were sore.. pain at a 3, 3½.. was expecting 7 or so.

So, Yay! Not as bad as anticipated!