Hi. My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!
I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
Oh, yeah, I can make you feel anxious or depressed, too.
If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me.
I’m rolling on the floor, laughing. Just try.
You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ♥️
Last Thursday & Friday (yes, Good Friday) I had an MRI both mornings. And it was not good.
For those who are unfamiliar with MRI’s, the machine is basically a tube, looking kinda like a doughnut. It has a bed attached to slide the patient in. How you go in & how far in you go, varies depending on what the scan is for. Mine are for my brain so I go in head first, as far in as my elbows . Alternatively, you can go in feet first and I have found out that they have a smaller sleeve kind of version for arms.
My fibro was flaring something fierce and had been since the Sunday prior. I know the MRI machine dors jostle to adjust for the scans, but I’ve never felt like this! Every time the bed was adjusted it was a fast start & a fast stop immediately after. It was very jarring on the body. The fibro pain was excruciating! Add the pain in my left arm from the scar tissue breaking up from my RMT (more coming), and I was almost out for f my mind. And I couldn’t even move my arms because that could cause the scan to blur which could lead to to inconclusive results and a repeat scan.
Add to this situation my claustrophobia, a fear of small spaces. On Thursday, the only thing that has kept me sane and kept me somewhat still, was slow deep breaths through the entire time. Even through each and every shift in the bed. I’m not sure I was able to keep myself motionless sufficently for a clear enough image. On Friday, I was smarter and remembered to take the lorazepam I had so I could quiet my mind while in the machine. That helped keep me more calm and helped relax my muscles. This made my fibro chill out and actually helped decrease the pain. I also was smart and lay my arms in a more relaxed and comfortable position before going in. The movement of the bed adjusting was still very jarring on the body, but with the breathing I was able to cope better.
When I got home, I went straight to bed to catch up on sleep and the lorazepam was really starting to knocking me out.
i had originally scheduled a different post with the same title.. One that should have posted in December, but some of it isn’t relevant anymore, and I’m in a different place, so I am changing it..
Why? Cuz for the first time in years my pain is at a 7/10.. Keep in mind, I picture 20/10 to be the equivalent of having my limbs cut off with a full chainsaw without the benefit of anesthesia or passing out from the pain.
Whats making it worse, is I had an epidural a few weeks back, so my lower back & my pain due to Osteoarthritis is pretty much non-existent. That means, I have fibro pain & *just* fibro pain at a 7/10. Normally when I hit a 7, it’s a combo of fibro & OA. When that happens, if I can dull out the OA pain, I can deal with the fibro.
Pain Scale 7/10
So, its *all* fibro pain & last night I was almost in tears, even with extra (Double) muscle relaxers & narcotics – even a good chunk of alcohol. So there’s not much more that can be done for it, and *nothing* they will do in Emerg to help. They won’t given me any meds stronger than what I am on. Narcotics or a muscle relaxer.
When I do visit the ER, I typically get a toradol shot & a Xanax. Tonight that won’t do anything to help.
The only good thing is that I see my pain doc. Honestly, not sure my shots are even going to help I expect she’s going to recommend a lidocaine infusion, the one treatment I’ve not tried. I think I’m going to say yes this time.
Why so much pain?
Simple, if you read my previous post about CBD, you’ll know my GP thinks it’s my medical marijuana. So I’ve been off the MMJ since February 17th. While not as bad, I’m still nauseated and I am still throwing up. I’ve been on this medication for about 4 years now & it was a huge help getting me off fentanyl..
Due to the extreme bruising, he, my GP, also yanked me off the arthrotec, an anti-inflammatory, a few weeks before that. But I still bruising.. I have been on this medication for decades, since my mid 20s…
So I’ve lost two of my treatments that were helping my fibro, but do not seem to be resolving the problems I took to him.
As a result my pain has been slowly creaping up & I’m experiencing allodynia again. Basically, it is a sensitivity to touch. See next week’s post for more about this & how it’s been impacting me..
Since my last post, the new nurse Christine was able to get my meds to where they were supposed to be for the most part. I will be eternally grateful for that.
Unfortunately, real damage was done in the way of pain.. Fortunately, I do see Dr Sith tomorrow.
But the brightest moment of this 72-hour hold was today at about 6 in the evening when I heard a voice. It was a woman’s voice. She had a Jamaican lilt to her voice. I placed her immediately as being *my* psychiatrist I walk towards her voice and she was in a room talking with a patient but she looked up at me and despite the mask and my weight loss she recognized me immediately and then saw a surprise on her face.
But she’s my doctor and I’ve been in her practice for almost 5 years. She is familiar with what’s going on with me and my history so I was super comfortable at that point. I took a deep breath and was able to relax.
A half an hour later, she and the nurse came down to my room and we discussed what caused me to come into the ER.. She wanted to know how I got to the ER.. We talked about how I was feeling and feeling out my.state of mind.. She asked me why I was so animate about leaving as soon as the hold was up.. She reacquainted herself with my home situation.. We discussed my weight loss – cuz it has been 2 years since she’s seen me & I’m definitely smaller. She asked me what I thought she could help with..
Apparently, she liked what she heard and she discharged me. WITH a meds change, which is really all I wanted.. That and to actually have an appointment set up with her which got done earlier as well. 🙂
Am I still pissed about how things went down?? Definitely. Am I happy with the final result? Absolutely!
I am pretty sure, most of us when we get a new medication do go through the drug information as well as discussion with our doctor about the side effects of the med. But keep this information because side effects can happen at any time..
There are at least three situations I can think of where it could be very important. I know two from personal experience:
You can adapt to the medication over time and the side effects can creep in as you’re adapting. For me, it happened twice. I was on Celexa for several months before the side effect of abdominal pain started creeping in.. Because it had been a few months we, nor my doctor or I, didn’t associate a possible side effect from a medication to the pain. I was also on fentanyl and didn’t even notice the side effect of a decreased libido as it slowly crept in. I thought it was part of getting older. until I came off the medication & return to the level of high school..
Dosage changes can also impact. With the increase in medication to help treat something you can also increase the risk of side effects. I had this happen with Cymbalta. Well it didn’t help me with my pain it was helping me with my mental health but we had to shift it up one level. This shift did the same thing as my fentanyl just took alot faster. Zero libido kicked in after only 2 days.
Other Interactions. It is entirely possible for medications to interact with other substances. Yes, the big one would be other prescription medications, there’s a possibility of interacting with over the counter medications, supplements of all sorts or foods even. So if you are having side effects, if you made any changes in any of these, take that into consideration. But the side effect might be from the food or the supplement or the new med, but the side effect could also be from the initial medication or worse a combination of more than two.
So, Yeah. Keep as eye on your side effects if there are changes, even if you’ve been on it for a while. Unfortunately, the third situation is the most convoluted one to sort out.
Yesterday was the perfect storm. Everything conspired against me.
Poor Sleep. According to my fitbit, for the last several weeks, I’ve been getting usually between 4 & 6 hours of sleep a night, average rating poor-fair. There’s the occasional longer, better sleep in there, but not often..
Forgotten Medication. When I left for the cottage early this morning, I forgot all my meds at home. Admittedly I didn’t need them all today, but there are certain ones that I do have to take at certain times for them to be effective. Unfortunately, those got left at home. I did have limited or weaker alternatives which I suppose is better than nothing.
Emotional Stress. I am currently having problems with my current relationship. I’m not sure if it’s something I can handle and accept or not, so there’s alot going on there..
Poor Diet. Due to the aforementioned stress, I haven’t been eating.. I haven’t been eating well & I haven’t been eating much. Neither is good, both is worse.
Activity. Spent the day in bed.. with my boyfriend, not sleeping. While this is usually a good thing, due to stress, I was unable to truely relax and enjoy it. So I was getting the workout without all the longer term benefits
Physical Stress. After I’d started going down hill, I had a horrible drive home. What would normally be a nice relaxing 1½ hour drive home from the cottage turned into a 3+hour nightmare. Between accidents causing an entire highway to shut down for over 14hrs, excessive detours, multiple accidents on said detours, snow.. The body begins to tense up more & more & more.. and with me being in the car I wasn’t able to like stretch or anything creating more physical stress
For the first time in over 3 years, my pain turned to a solid 8/10.
After 2+ hours, 4 Tylenol3, 4 muscle relaxers, an anti-inflammatory, my CBD oil, prescription edibles, and a backrub with A535.. the edge started to come off, but I also started feeling the effects of over medication too..
Given our chronic medical issues you would think we would know everything and anything about what is going on. Well some of us are fanatical and no every single thing but her medical conditions are treatments and all the other possibilities, very few of us do. But here are some important information that we should know.
Who’s Your Pharmacy Staff?
I’m not talking about the stock boys or the cashier’s, but the staff who prepare your meds. If you have a good rapport with the pharmacy technicians and your pharmacist you are less likely to have problems and they are probably more willing to take the time to communicate with you about concerns and questions you have.
Do I know my Pharmacy Staff?
I get my medications through a large national chain. I would recognize the two pharmacists that work nights I believe one is Christopher & I *know* the other is Stephanie. As for the Pharmacy techs, I do recognize them & I believe most of them recognize me in the context of the pharmacy. The girl who usually works pick up is Hailey and she recognizes me, despite the mask. When she sees me step towards her in line to get my meds she says to me “Hey Kelli! How’s it going?” As she’s already getting my info pulled up on the computer which is search my last name. The girl before her I also had a similar camaraderie.
The pharmacy prior was a smaller store of a different national chain. They knew me fairly well and vs versa. We would recognize each other on sight, even outside the pharmacy, by name – Mine, my SO & my Dog lol.
What Are Your Medications?
Most of us know our medications known by one name or another and most of us also know our dosages. But did you know that the generic is not the same as your brand names. Each of these medications have different code numbers so Nabilone has one unique number and Cesemet, which is really the same medication, has a different one. This is because the formulation is slightly different Do you know about these numbers? I know in Canada it’s called the Drug Identification Number and I believe in the States it’s a National Drug Code (someone correct me if I’m wrong). They *should* be listed on your prescription bottle
Different formulas & dosages of the same medication all need a unique DIN or NDV
Do I know the Drug Identification Numbers of my medications?
No, not off the top of my head. I do have that information in my bedside table however (maybe I should put that in my phone – lol). So while I don’t have the information in my head I do have a handy.
This is the reason why CBD or THC by prescription is not covered by medical benefits because it does not have a DIN or NDC
What are the Possible Side Effects of Your Prescription?
I am pretty sure, most of us when we get a new medication do go through the drug information as well as discussion with our doctor about the side effects of the med. But keep this information because side effects can happen at any time..
A few weeks back, I was talking to my mom about my health and we were discussing one of my previous trips to the emergency room. The visit in question was due to mental health not physical but it’s still triggered a thought in my head.
I used to be a fairly regular patient when I lived in East Toronto.. At my worst I was in the ER at either Centenary or Scarborough General 2-3 times a month for quite a while.
With this conversation, I came to the realization that I haven’t been to the ER or the hospital since covid started, and the world shut down March 2020.
This means that I had not had to go to the ER for my pain at all for almost a year & a half! Personally, I think that’s pretty good!
Before anyone tells me that a trip to the ER is pointless & they will just accuse me of wanting drugs and won’t take me seriously. I believe I’ve actually addressed this issue previously.
When I go to the ER, I’m not looking for narcotics. What I want is big shot of toradol and some sort of stronger muscle relaxant. What this does is it calms down my osteoarthritis which makes the rest of the issues significantly more manageable.
There is even one doctor there at Oshawa General who also used to be at Centenary where I used to go when I lived in Toronto. Because of being a frequent flyer when I was in Toronto, this physician knows me on sight, knows my likely issue, and will turn around and say “Toradol shot?” And he writes the order for me. I can be gone in minutes once I’m in the back when he’s there.
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 your damn straight I’m going to make it up to the day.
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!
Fibromyalgia 
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