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.

Epidural? For Fibro?

Actually, no, not for fibromyalgia.. Well it does help some of the fibromyalgia pain, but that is not how it helps the most.

I’ve mentioned in previous posts about the injections that I get. I mostly talk about the trigger point injections & less about the epidurals..

The epidural medication, Triamcinolone, is a corticosteroid which is an anti-inflammatory. It works by activating natural substances in the skin to reduce swelling, redness, and itching. I have osteoarthritis in my lower back from S1 to L1, if I recall correctly & it’s probably progressed since the original diagnosis about 7-8 years ago. Osteoarthriti is the degradation of the spinal cartilage making the bone change resulting in pain, stiffness, and swelling..

The process is done by anesthesiologist. He gives me a local anesthetic, and then a second deeper anesthetic before finally injecting the corticalsteroid into my back through the notch in my coccyx aka the tailbone. He then also does the regular trigger point injections.

A visual representation of where the needle is injected to.

After the injection I am monitored for 30 to 45 minutes before I am permitted to leave to ensure I’m not reacting badly..

The initial results are awesome, always. Later in the day when the local anesthetics were off the area of the injection is sore. Fortunately at that point it’s later in the day and I’m slowing down anyways.

I typically get two to three epidurals per year starting in November or December & ending in March or April. For whatever reason my osteoarthritis tends to be worse during the winter. I usually get them every 7 and 9 weeks. I would say my initial pain level drops to ½-1 /10.. Considering I’m anywhere between a 5 and an 8 when I go in to get these shots, that’s amazing!! The effect does tend to wear off and is pretty much worn off in 7-9 weeks. The shortest time I’ve gone between shots was 5 weeks.

They help me. & For a short while, I almost feel pain-free!

What Do Pain Docs Do For Me?

As mentioned in my previous post, I see two different pain physicians. Yes they do both know about each other. Actually, one referred me to the other. But why two? Because they do different things that help differently and for different durations.

I know these doctors know what each other’s are doing because I see them both in the same clinic but different offices. And while there are different offices in different cities, my electronic file is available to them both.

Shots with Dr S

My regular appointment is with Dr S.. I actually started seeing her 10 or more years ago, once a week but now generally only see her every four weeks now. From her I get nerve and trigger point injections.

I get them in my shoulder for the nerve going down my arms, 2 injections on each side of the back, the top of my back at the sides of spine in the trapezius muscle, down my back in painful trigger points primarily in the shoulder blade & the latissimus Dorso muscle, 8 shots in my lower back beside the Sacral & lumbar vertebrae, and on in the back of each hip for the sciatica. So a minimum of a about 20, to up to close to 50. Typically I get 30 shots in my back & neck.

Bupivacaine – for nerve & trigger point injections

Bupivacaine injection is used to numb an area of your body during procedures. It is a local anesthetic. It causes a loss of feeling and prevents pain by blocking signals at the nerve endings.

Epi with Dr J

I also, only in the winter, see Dr J.. He is an anesthesiologist and performs epidurals in my lower spine, specifically my tailbone every two to two and a half months. This is in lieu of the injection shots in my lower back as the pain in my lower back goes up during the winter probably due to the cold & the OsteoArthritis in my lower spine. The epidural covers a lot more space on the lower back and does a better job with the pain has it lasts about 2 months, not just one.

Traimcinolone – For coccyx Epidural

Triamcinolone is in a class of medications called corticosteroids. It works by activating natural substances in the skin to reduce swelling, redness, and itching.

Compare: How Do They Work?

The monthly injections with Dr S are done with a medication that is a local anesthetic, While it does help break up the knots of the Myofascial Pain Syndrome, it is primarily a numbing agent forthe pain. Over the years the blockage of pain has lasted longer and longer. Initially it was less than a week whereas now I am almost back to my pre-COVID pain treatment level at almost four weeks.

The epidurals with Dr J are with both the bupicavacine in the lower back and the corticosteroids which is a type of anti-inflammatory. So in addition to the initial numbing, I am also getting inflammation reduction as this medication reduces the signs and symptoms of inflammatory conditions & rheumatologic diseases such as arthritis including RA & OA.

So given that on the weekend, my pain hovered to an 8 out of 10, I am grateful that I was able to book in quickly with Dr J today & glad I’m seeing DrS for the upper back injections tomorrow.

Ongoing Holiday Crash

Most of the time when I have a crash in the holidays I end up in the hospital because of how bad the pain can get.. I usually manage for a few days at a level 7 or 8 out of 10 and after that, I’m in the ER.

This year, while the pain has been up, it hasn’t spiked to that level yet. And I hope it doesn’t. But unfortunately I have been in less higher level since the 26th of December – so, 17 days days now, which is unusual, for me… A severely sucks..

But I called my pain physician in Scarborough for an appointment on Monday & see my other pain doctor Tuesday. . With pain levels at a 5 or 6, I can deal, but only to a point.. after more than 2 weeks, I’ve hit that point..

Wish me luck!