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.

COVID Vaccine Eligibility

So currently in Ontario, where I live, there is a three tier plan, which itself is made up of stages.

Phase 1 is for High-risk populations including

• Congregate living for seniors
• Health care workers
• Adults in First Nations, Métis and Inuit populations
• Adult chronic home care recipients
• Adults ages 80 and older
• Adults with the highest-risk health conditions:

From this group, my Brother-in-law, my 2 nieces & my Dad were all quickly eligible for the first phase.

Phase II is described as Mass deliveries of vaccines. This is our current phasewhere we currently stand in the process. This phase includes:

• Adults aged 60 to 79, in 5-year increments
• High-risk congregate settings (such as shelters, community living)
• Individuals with high-risk chronic conditions and their caregivers
• Those who cannot work from home
• At-risk populations

So, with that description,you’d think I would be eligible in Phase 2 for either Endo, Fobro, CFS/ME, etc.. but no.. here are the lists of conditions that apply:

Highest-Risk Health Conditions, eligible at phase I:

• Organ transplant recipients
• Hematopoietic stem cell transplant recipients
• Neurological diseases in which respiratory function may be compromised (e.g., motor neuron disease, myasthenia gravis, multiple sclerosis)
• Haematological malignancy diagnosed <1 year
• Kidney disease eGFR< 30

Of these conditions, I have none. .

High-Risk Health Conditions currently eligible

• Obesity (BMI > 40)
• Other treatments causing immunosuppression (e.g., chemotherapy, immunity- weakening medications)
• Intellectual or developmental disabilities (e.g., Down Syndrome)

Of these conditions, I have none. It’s interesting that someone who is so far they are morbidly obese has priority over someone with a heart condition..

I no longer has a BMI over 40.. At my worst, my BMI was over 50 ( I just looked that up & I’m like “Damn, Girl!”) My BMI is now approximately 33.. so, I’m not eligible for that either.

At-Risk Health Conditions:

• Immune deficiencies/autoimmune disorders
• Stroke/cerebrovascular disease
• Dementia
• Diabetes
• Liver disease
• All other cancers
• Respiratory diseases
• Spleen problems (e.g., asplenia)
• Heart disease
• Hypertension with end organ damage
• Diagnosis of mental disorder
• Substance use disorders
• Sickle Cell Disease
• Thalassemia
• Pregnancy
• Immunocompromising health conditions
• Other disabilities requiring direct support care in the community

Again no Fibro, No Endo, No CFS/ME.. Whil those last 2 are considered to possibly be autoimmune, they are not classified as such. So instead I qualify due to:

• Respiratory diseases – I have asthma. It is currently controlled & I would only need th ventolin for strenuous activity
• Diagnosis of mental disorder – I have chronic depression, have since I was 16
• Substance use disorders – I have an addiction to fentanyl – controlled & my last use was about 3 years ago.

I’m not sure what the “other disabilities ‘ entails.. But I doubt it covers the other conditions, but it’s so vague.

So, cuz I am depressed, cuz I used to need a puffer & cuz I like fentanyl a little too much, I am eligible for phase not cuz of the Endo, Fibro, CFS/ME. Apparently people with these condition are otherwise only eligible in stage 3 with the rest of Canada. That is unless their family doctor gets vaccines.

Crappy Week

So, I posted on the 13th of April about how crappy I was feeling on Monday… While I’m not having a problem getting my shower door open, I’m still feeling like crap.

It’s been a long time for me that I’ve have sustained a higher pain.level over more than a few days..feeling crappy started Sunday morning.

If you ask me what I did on Saturday? I went for a drive. I love to drive, but with the price of gas right now, it’s a little expensive. So, I has in & out of the car & driving around.. Even hopped on the highway to drop of my BFF’s birthday pressie..

So nothing was done out of the ordinary that could trigger a flare. To be honest, I’m surprised I didn’t flare the weekend before at the cottage when I *did* do something that could cause a flare – helping my Dad move the trailer.. I just don’t get it

And to top it off, I’m not sure what my body is trying to do. My pain levels are up. And all I have thinking about is fentanyl…. I just don’t know if it’s a want for pain relief or if the want is to be oblivious to everything cuz of the medication, or just to get high..

Libido

How fibro & other issues affect or don’t affect my libido. People who know me but do not have interest in this topic as relates to me, like a sibling or parent, even some friends, you just might want to skip this post.

Lol.. No, this is not me & a partner, but a stock photo. 😉

When I was young, before the fibro became an issue, I was only dealing with the early onset of only Endometriosis & CFS. My sex drive, much to the delight of my boyfriends over the years, was high. I don’t know many women who have that strong a libido. I only know of one female whose libido is close to mine. I’d equate my strong libido levels to that of an 18;year old boy. That tells us something.

I have found that the medical condition itself of fibromyalgia does not impact my libido. It does however impact if, when and how I act on that libido. Whether I’m a passive or active partner, how I can move and what positions I can or can’t get into. And there are some days that are just too painful. The mind is willing, the body not so much.

While the fibro has not impacted the desire, what has impacted it over the years is medications. I’ve had two major medications not only decrease but almost eliminate any sex drive I had.

Fentanyl patches completely killed my libido

Fentanyl: I was, at one point, at 50mcg/hr through a fentanyl patch. And because I had slowly been increased to that.. I didn’t initially notice the libido drop.. It was a slow progression to the complete elimination of any interest.. I was also on it for several years and I guess I attributed the drop in drive as a fibromyalgia issue as many women in the support groups have lost their libido to fibro. I only found out that it had completely suppressed my natural urges when I came off it. It took only a few days for it to return. And return it did! Unfortunately I was single at the time.

Cymbalta significantly impaired my libido

Cymbalta: It seems that there are a lot of antidepressants that can impair one’s sex drive. Fortunately, I’ve never had problems with them until the Cymbalta. It was initially great for my depression, but zero help for the Fibro for me.. But when we tweaked it & bumped it up a level, the mood stabilizer part of the medication was better, but within 48 hours of starting the higher dose, the libido died. We tried it for 6 months to see if that side effect would wear off before switching me to a different medication. My sex drive returned in maybe 36 hours, at most.. But again, I was single again, at the time.

Now, these medications may not impact others the same way and I’m sure there are other medications that will impair sex drive of others. This is my experience and my experience only.

Meds Crash

As I mentioned in an earlier post, I have a pain/fibro doc who gets it. One of the things he did was to put me on a pain patch.

Some of you may know that I have funky allergies including products found both in food and adhesives. For those who didn’t know, you know now.

I’m sure you’ve figured out where this is going.. The pain patches are stuck to the skin via an adhesive. Now, fortunately I’m not allergic to all adhesives..

But, the default brand my pharmacy is called Sandos & I am allergic to it. How’d I find out? The hard way. These patches are supposed to release a constant dosage into the bloodstream, but when I react, I get itchy and the local area becomes inflamed, red and raw. When the skin is inflamed, red and raw, it doesn’t absorb well. So I get the lovely sensations not only from withdrawal, but also from the increased pain levels cuz I am not getting my meds. Now you’d think that after the first time they’d be diligent and ensure that I don’t get the ones I’m allergic to, but no, they didn’t save anything on file *eyeroll*. Also, you’d think that *I* would also be super diligent. Nope! I realized when I woke up Saturday (put it on Friday night) that I was reacting, again. And of course didn’t realize the withdrawal thing until an hour or so ago. Since the original patch is pretty much useless for me now, I’ve yanked it off & disposed of it. I’ve also put on a fresh one in a very different location. Hopefully that will help the withdrawal & pain issues until I can get the ones I’m not allergic to tomorrow. I’ve already had my pharmacy order them, just need the corrected script from my doc..
Yay. *sigh*