Posts Tagged ‘Injections’

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.

Myth Debunked VI of VI

June 6, 2021

FIBROMYALGIA DIAGNOSIS IS THE END OF THE ROAD

Many find it hard to accept a fibromyalgia diagnosis, not just because of the condition itself but because of what it means. It can feel like the healthcare professionals are saying ‘there’s clearly something wrong with you but we have no idea what it is… there’s nothing more we can do for you’.  This ties into the point of the trashcan / umbrella diagnosis.

Lack of information and fibromyalgia-specific support at the time of diagnosis can leave many feeling like the diagnosis is the end of the road, but that doesn’t have to be the case. The OP was personally told by her rheumatologist not to go online because she’d ‘fall down the rabbit hole’. I imagine the doctor wanted her to go home, give up and stop bothering doctors.

Acceptance, often a difficult and ongoing work-in-progress for many, can be done in conjunction with keeping open mind, still being open to new developments, diagnoses and tests and treatments while working to manage fibromyalgia in day to day life.

Myself, I knew my diagnosis before my doctor’s did (Did the same with my endo), so acceptance was never much of an issue for me. I think my GP had a harder time accepting it than I did.

While there’s no cure, a multi-disciplinary approach can help to some degree. The likes of pacing, pain self-management therapy, massage, acupuncture, gentle exercise, gadgets, self-help books, medication, supplements and so on will work differently for everyone; both the experience of fibromyalgia and its management will be different for each person. It’s often a case of trial and error for each individual to develop a routine and to find the tools that work more effectively for them. 

My regime is a multi-disciplinary approach as mentioned above. I have a muscle relaxer, an anti-inflammatory, low level narcotics, MMJ and a small selection of vitamins. I also regularly see a physiotherapist /osteopath, RMT, pain physician for trigger point injections, & my dentist because of my TMJ, I participate in exercise which prior to covid was Aquafit for the most part. I try to watch my dietary choices, but I know I still fail there- addictions to sugar & McDonald’s. I am also involved in chronic pain support groups in my area which are currently virtual.

What hasn’t worked for me includes Lyrica, Gabapentin, Cymbalta, Fentanyl and Codeine Contin. I have given acupuncture several tries but have not found it helpful for me & occasionally detrimental. My best friend sees a chiropractor but I found that they were less helpful for me. I also still need to be very careful in the way of exercise so it’s not to over do..

I Got my Shot

May 14, 2021

Recently, I received an email from Sobey’s Grocery stores in response to my request to be waitlisted for the vaccine.. They said, I was eligible for the COVID vaccine, for the AstraZeneca vaccine. Finally!!

AZ Vacvine

I went & signed up. It turns out the closest location for the shot was in the city a Gerrard & Vic Park. I’m sure there’s not a lot of you familiar with the geography of Toronto but from my home it is approximately 50 km or just over 30 miles ( just under an hour away) to that specific grocery store for my shot. But I was going to be going into Scarborough (East Toronto) anyways because of Lilly’s surgery. I figured I’d would kill two birds with one stone.

My Shot, Thursday

So my appointment was on Thursday, at 11:30am. It was super quick. By the time my brain registered the sensation of the needle, she was already putting it syringe into the sharps bin.So, even if you don’t like needles, it’s not that bad. I stayed the required 15 minutes. No reaction initially other than some moderate nausea.

Waiting n the cubical for the pharmacist to give me my shot

The nausea stayed with me for the day. I was a little tired afterwards & had a short nap which helped me feel a little better. Even went for walk with my sister in the evening.

My Reactions – That Night

By 2:00am the nausea was worse, so much so that I had an empty bucket beside my bed, just in case.

Shortly after that I noticed I was cold. I was eventually shivering despite pj’s and warm bedding. My temperature at this time was 38 & change in Celcius .

My arm was sore, but most people have that reaction. My fibro was triggered and my pain was climbing everywhere. At worst I’d say 5/10.

By 5:00 this morning my body had switched from shivering to sweating. I was also having a headache kick in. I took some Tylenol with codeine and was finally able to get back to sleep.

My Reactions – Next Day, Friday

I was abruptly woken up by my Mom at 10:30am for a temperature check. It was 36.8, completely normal. After checking Lilly & giving her meds (see her surgical post if you are interested), I went back to bed. Fortunately in the morning, the body wide pain had taken a step back and no more shivering or sweating. I did still have the headache, and the nausea but it was not as bad.

As the day wore on I’d flip from chills to overheating, but no temperature. The nausea kept up and I did rush to the bathroom with dry heaves. The body-wide aches went back up by bedtime.

My Reactions – Day 2 Post Vaccine, Saturday

Still has ongoing flipping between chills & hot flashes. Left arm still sore.. Ongoing body aches all during the day.. Still nauseous, but not actually vomiting..sent alot of my time resting.

My Reactions – Day 3 Vaccine, Sunday.

Chills & hot flashes completely abated by the evening and the nausea aswell. Still had body-wide aches & pains.

My Reactions – Day 4 & 5, Monday & Tuesday.

I think by this point I was completely finished reacting to the actual vaccine, whoever my fibromyalgia decided to react to the vaccine reaction. Oh so fun. So by the time I woke up on Monday I was in a lovely little fibro flare that has lasted several days. Only thing I accomplished was the opening & closing of my Tuesday Night Cub meeting.

So, by this point my actual immunoreaction to the medication in the vaccine was done, but not the end of this saga of my vaccine.. Read here for more on this story.

What Do Pain Docs Do For Me?

January 11, 2021

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

January 9, 2021

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!

I’m A Human Pincushion

August 21, 2020

About 8, maybe 10 years ago, I was referred to The Centre for Pain Management to help get the fibro under control &, if I’m lucky, off all the drugs.

I was initially getting weekly injections of Marcaine. This is an injectable medication that is a numbing agent similar to Lidocaine..

Where do I get them? Lol, everywhere! hence the pincushion reference.. They are primarily in my back. I get nerve injections & trigger point injections. The nerve injections, I get 4in the lower back on each side of my spine & the sciatic nerve the goes down the leg. I get two in the neck on each side. And a final pair at the top of the shoulder. So that’s 16 to start, pretty much every visit. The number of trigger point injections depends on what’s been flaring (FM? CFS? OA? MPS? Stress?) Initially she was giving me upwards to another 20-30 shots. That means up to 45 shots in my back neck & shoulders.

About 5 years ago we started to see improvement & extended the time between visits so that unless I was in a flare I was going every other week. This progressed to three weeks, then four.

Just before COVID hit in March, I was just starting & doing well on an appointment every 5 weeks. While I was still usually getting the basic 16, I was only getting 10.. 15 max other injections in my back. I was doing well.

Unfortunately due to COVID & the loss of many of my other treatments, my pain levels have jumped back up.. However, not as bad as when I initially met her.. so I’m currently going every other week.. getting the base 16 & maybe another 15. With my other treatments slowly becoming available, I am hoping I will be able to return to the levels I was in the spring.

Currently, I visit my Doctor at CPM every other week. However, I will be away when my next appointment shows up & I’ll be trying every 3 weeks. Hopefully it’ll be ok. There is no way I’d be able to drive home in that kinda pain.