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. ♥️
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.
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.
I did some exercise before bed. Normally a little exercise drains me & nixes my RLS.. Normally. Not so last night. It backfired.
I couldn’t sleep for a few reasons:
My Restless Leggs Syndrome kicked in despite the exercise. I had to take 1½ Trazadone to get them to settle..
My mind could not shut off..Kept thinking about stuff, like my cub scouts and my plans for the weekend. I just kept going over stuff in my head – despite trying 3 different sleep meditations.
The exercise reacted like it used to – negatively. In the last few years, basic exercise has not been the hindrance it was for the 10+ years prior. So imagine my surprise when in snuggling into bed & my leggs (in addition to RLS) start to hurt.. it was not good. I’ve not had this reaction (other than overdoing it) is several years.
No, the want for immediate gratification and instant response was not for sleep. In this case, it was for my pain meds to work. I had to run 3 courses of meds. The first one the regular evening maintenance pain regime. The second was more Tylenol about an hour later. After still not getting additional relief from the additional meds, I bumped it up, 2 more Tylenol, 2 Robax which includes another, but different, muscle relaxant & anti-inflammatory.
I figure today is the perfect day to discuss this topic, as today July 24 is Self-Care Day,!
What is Self-Care?
Self-care, as defined by the World Health Organization, as what a person does for one’s self to establish and maintain health and to prevent and deal with illness. This includes hygiene, nutrition, lifestyle & activities, environmental factotrs, sociao-ecpnomic factors and self-medication. This includes physical as well as mental & emotional health.
So, basically, taking care of one’s self. & showing yourself some love.
But this is something us with chronic illnesses have a problems doing. We tend not to prioritize ourselves in the grand scheme of things. It is something we need to do to help ourselve help get us better. Not healed, but better.. I guess a more appropriate word would be improved (that is another blog post in & of itself)
So what to do to help ones self? There are a ton of things you could do. Here is a by no means exhaustive list of thngs to help improve your personal health, or self-care. A search on Google will give you additional ideas as well as suggestions for 30 days of self-care, a cheat sheet or a self-care checklist. I’m sure the list below includes information from these sources.
Self-Care Ideas
Take a walk
Meditate
Call a friend
Go out for a coffee/drink with a friend
Read
Warm bath, or hot tub
Yoga
Tale a nap
Dance or just listen to music
Sing
Keep hydrated
Sexual Acrivity
Compliment someone else (You’d be surprised at how well this can make you feel)
Plan kindness activities
Colour.. or Paint.. Do something creative
Knit, sew, crochet, macrame, needlepoint. Make something
Mani/pedi
Get a massage
Hug your kids, furbabies, nieces, nephews, grandkids
Stretch
Watch something funny – Tv show, movie, theatre
Plan a dream vaction
Plan what you would do if you won $25million
Take a trip to the salon to get your hair done
Get dressed up just to get dressed up.. If you look good, you feel good
Journal
Declutter a space on your home
Say or find posotive affeirmations. My mirror says “You’re Beautiful”. Who am I to argue wiht the mirror mirror on the wall?? 😉
Volunteer
Try something new
Ask for help!
Unplug. (This one is difficult for me)
Plan & eat a nutrional, healthy and delicious meal, bonus if its a new recipie
Hang with a friend
Watch funny videos.. I like Jeff Dunhan & Fliffy
Exercise
Eat dessert, but not every day!
Start a new, good habit
Create a bucket list.. A fanaticl one or a realisitic one, your choice
Pop Bubble Wrap!
Watch cute videos online – I love puppy videos, and the kitten ar cute too.. 🙂
Go for a drive
Deep slow breathing
Play with or cuddle with your pet
Learn a new skill
Practice positive selft-talk
Walk outside, feel the grass under your feet. (watch for glass if not in your backyard)
Forgive. Not for them, for you. it help you heal
Talk with someone, even a therapist or councillor
Remove negative people or groups from your social media
Family activity day
Make a list of what you are grateful for. Start with being alive, having shelter, and a full belly.. Go from there.
Sit in front of the campfire – Make smores, spider dogs, or mountain pies
Learn something new
Play a sport you enjoy, or watch it professionally
So.. Lots of choices as I said, There are alot of other options out there. Remember this activitiy, or lack threeof, is to make you feel better.
My Go To’s:
Meditate
Slow, deep, easy breathing – helps me sleep
Read
Drive – I love to drive.
Muisc – Listen, sing or dance to.
Volunteer (I’ve been a Scouter with Scouts Canada in some form or another for almost 20 years. – COVID’s made it a challenge)
Mani/Pedi – by myself or at a salon
Hair Salon – Love the head massage when she washes my hair
Sitting by the campfire, preferably with friends or the Cubs with approapriate libations & snacks
Massage therapy
Exercise, when viable.. Walks, jogs, Yoga Aqua-fit, arriba dance, etc.. dependng on pain & energy levels
Hot Tub. I prefer bewtween 99-102.. Can’t do hotter. 😦
Huggs 🙂 From wherever safely possible
Sex, with or without a partner
Go for a drive
Compliment somone – their hair, nails, clothing, shoes, etc..
Forgive
Colour and/or paint
Knots. Not a typical activity, but i like the challenge, plus im a Scouter, go figure.
Socialization with friends & family
Play or Cuddle with Lilly, my dog. ( See: “She Saved Me” post for more info on her.)
Call someone or at least check in for only that purpose, to see how they are.
Think or plan how i\I’d spend lottery winnings
& the obvious – Journalling. My blog, my instagram & facebook pages help me express myself.
What to Avoid:
Excessive or inaprropriate drinking or drug use
Maintaining toxic relationships
Argue excessively
Ovedoing an exercise routine
Stressful situations
Gambling
High-risk behaviours
Voilence to one’s self or others
Other self-destructive behaviours
Self-isolation (except as needed for COVID, but even then you can zoom or call or text) aka Social suicide
A few days ago my Dad asked me if I was gonna join him & Mom at the cottage this weekend. I said no. He stated they were going to my brother’s on Saturday then come home. I hedged, taking a deep breath, then my Dad stopped, looked at me and says “For Father’s Day.” Well played, Dad. Well played.
So, Satuday.. (Dad decided to just go up to my brother’s on Saturday & not the cottage.) And just getting out of bed, I can tell that this was not going to a great day.
Ok, 2 hour drive to my brother’s.. In the back seat of the van. We did have a pit stop part way up to get out & stretch. I also used my Obus Form back rest in the van. So, it could have been worse.
We got there shortly after 1.. I frgot take take my noon meds until about 2-2:30 only to realize, that while indie bring my Robes, I grabbed the wrong bottle & did not have my prescription muscle relaxer. So, I made do with the Robax instead.
We then spent the entire afternoon in lawns chairs on the grass, then the deck for dinner. As the day wore on, I became in more & more pain, even taking extra Tylenol, more than I’m supposed to.. I had no opportunity to rest, or to even lay down. The day, was not going well, health-wise.
But apparently I hid it well. Mom didn’t even know it was having significant problems. That is until we got in the van for the 2hr drive home. Then she noticed.. & asked if I was ok. Of course, I said no, but there’s not much to do about it.
Then I guess Dad figured that he should get us home faster and it was a really rough & jarring ride. That doesnt help, getting jostled around the back seat as he takes turn quickly and sharply.. But he did get us home 13 minutes faster than expected.
As you can tell by the publish time, it’s morning – a time i rarely see, but cuz of all that happened, I’m still awake and in pain cuz I overdid it.
So, I figure one of the following happened: 1. They Can’t see it. 2. They don’t see it, 3. They won’t see it . 4. I’m getting beat better at hiding it.
In bed, for the most part.. Seriously.. The fog’s been thick and the healing sleep has been damn near extinct, thus the pain’s been rather nasty.
Doc takes me off my sleep meds & has me double up on my melatonin while he waits for blood results. This switch did squat to help.
So the bloodwork comes in & there’s not much there that’s a problem except thyroid levels are still too high. So up the thyroid meds & try new sleep meds..
New meds are a psychiatric medication. They made me sleep all damn night & most of the day! And none of that sleep was good sleep.. I have to thank God for the patches. & the pain pills I’m on.. So they psych meds last about a week & he put me on a medication I am already on, prescribed by my gp.. So back on nothing at all new & taking pain meds & oodles of melatonin..
So here I am.. Back on the clonazepam, waiting for it to work & over doing life yesterday was not the best choice.. Hope the current sleep meds kick in & help.. My body just wants to finally feel improved, preferably w/o extra pills..
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*
Fibromyalgia 
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