My Name is Fibromyalgia

From Chronic Pain Life Facebook group

MY NAME IS FIBROMYALGIA

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. ♥️

Crash and Burn II

So I overdid it on the Civic holiday weekend and crashed as a result. I’ve been in a flare ever since.. This is a continuation of Crash and Burn.

As I said, Monday was about the same, pain-wise & still working on my sister’s project, but finally got a decent amount of work done on with this project. I think there was no improvement on Monday because I went to soccer.

Tuesday morning showed some more small improvement. That afternoon was my appointment with Dr Sithaparanathan at Neupath Pain Clinic (formerly CPM). Got my full shots & she gave me big trouble for over doing it. She asked my why I overdid it cuz she knows I’m pretty in tune with my body & it’s pain. I had lidocaine infusion on the Tuesday prior & the pain relief was still in effect which is why I didn’t feel any pending problems I guess the impact work off Sunday night/Monday morning while I slept.

So Tuesday afternoon was better, and was spent again at my sister’s.

I noticed significant improvement in weight bearing on Wednesday. The week prior, I was unable to pick up the sewing machine, even just to lift it from the table My brother-in-law had to come over and pick it up to take it to my sister’s. Today, however, I was running errands, one of which was to get the light bulb changed which required me to take the machine with me. I was able to carry it now. It was a bit of a struggle, but I was able to do it, take it out to the car. Yay!

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As you can see, we are getting it done & here’s a view of one of her love seats in case I didn’t share before. This just shows the look we are going for with this completed loveseat.

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I got some of my own stuff done that day cuz I was not at my sister’s doing stuff, tho several of my errands were related.

At this point, I was still having trouble getting moving in the mornings – usually afternoons right now. Pain levels are still higher when I wake and still having problems getting decent sleep Sunday – 6hrs, Monday – 6 hr, Tuesday after my shots was good with almost 7½, Thursday – 5¾hr, Friday – 4hrs.

While I’m *in* bed by midnight, I am not tired til at least 2am, some times up until 4am. There are also where I wake in the middle of the night wide awake. None of this helps my sleep. Thursday was bad with a combination of both. I was in bed shortly before 1am attempting to sleep. According to my Fitbit, I dozed off at 3:30am & up at almost 5, wide awake and unable to get back to sleep until 8 but even then for only 3 hours before being wide awake. And people wonder why I am completely exhausted some days.

So, overall, pain got better and better, but I was still getting exhausted each day.

i also began to have problems with my ankle &: my knee. Being on vacation, my knee has been fine.. was even good on Sunday after being off seeing since Thursday. However, being Wednesday of my week off, I’m pretty sure the peddle usage has aggravated my gout. I’m icing it & tossing it in my tensor when I’m doing any significant walking.

Let’s hope, with us not starting back up after the long weekend that it starts to heal up on its own. 🙂

Crash & Burn

The August long weekend was spent at home, the first time in several years, even doing covid. Typically I would be up at bff’s cottage, but she wanted the weekend starting her vacation to just be her & hubby..

Instead, I spent it in the GTA. Thursday night I went walking with my friend Tracy as my sister was at the cottage on vacation. We went 5.18 km according to my fitbit. Pace was 7.8 km/hr which is pretty good. Average speed for someone our age is about 4.5km/hr. So a good clip.

Friday was a quiet day, but Saturday started with my mom having a hissy fit about all my stuff in their space, so I spent the afternoon hauling any of my personal belongings & any cub supplies I had from the garage and into the backyard , either to my indoor space or my father’s shed. Between 2 & 6:30, my fit bit recognized three instance of exercise. 2 were classified as walks, but one was registered as sport. This tells you how hard I was working. That evening I went out to a bar with friends. Some were new to our group, so we had some ice breaker activities & lots of chat, getting to know new people. Then off to the dance floor until I left shortly before 1am.

Sunday registered a walk on my fit bit at 12 and I don’t remember what I was doing.. likely at noon I’m still dragging my ass outta bed,, esp when I wasn’t home until 2.. ( I realized layer it was 12 midnight & I was dancing).. I then took the pup to the dog park and we took the longer path. I did yoga for about a half hour & change. *Then* I went to soccer & I was exhausted by the end.

I woke Monday morning, thinking “Hmm.. I’m not too bad.” Then I moved. Boy was I wrong! 8/10, easy, & pure fibro pain. Not alot anyone can do anything for that.. Plus ongoing muscle cramps in my legs on & off until I got some magnesium on Wednesday, which helped..

So I spent the holiday Monday in bed, same with Tuesday & Wednesday other than a painfully slow walk, barely 1km/hr. I was however feeling a bit better each day..

Thursday was spent at my sister’s hanging out at her pool & started working on a project she wanted to do this month. Got in a couple of short walks, minimally faster than the days before.

Saturday & Sunday we also spent working on the project with multiple pool breaks .. I did go out with friends on Saturday which was nice. Then I again went to soccer on Sunday – am I a glutton for punishment or what?

So now we are one week later, pain levels still jumping at a 4-6/10.. depending on the time of day.. Sunday afternoon I was at a 4.. Probably why I went to soccer.

Monday was about the same, pain-wise & still working on my sister’s project, but finally got a decent amount of work done on with this project.

to be continued…

MRI’s Suck

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.

Results are still pending.

Pain Is Up!

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..

Flaring! Flaring bad!

Yesterday was the perfect storm. Everything conspired against me.

1. 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..
2. 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.
3. 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..
4. 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.
5. 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
6. 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..

I just can’t win..

Stress Impacts the Body

You all know stress impacts the human body. No one knows this more than people with Fibromyalgia. Part of our issue is that our muscles cannot relax because of the pain signals we are receiving at all times. Add stress to that, with most common physical reaction to stress is muscle tension. So adding tension to an already agitated muscle makes for a disaster.

No one knows yet 100% of the cause of Fibro. If it’s actually a physiological issue or if it’s a neurological reaction? Either way, the addition of the tension to the already agitated muscle, skyrockets the pain, with definite real pain.. Not just a neurological misfire that we could potentially be having.

And before anyone says I’m minimizing pain, I am not. People with fibromyalgia feel pain every single day. – it’s the cause we don’t know. We don’t know if the cause is something physical in the muscles, we don’t know if it’s part of the nerve chain or even something in the brain. We.just don’t know And as many of you know, I’m in a remission with my Fibro. I still feel pain, but I’m better managed and had made alot of changes a few years back. As a result, my pain levels rarely rate over a 5 – right now. I have, in the past, been bed bound. So I’ve been at both ends of the spectrum. I am the last person to downplay anyone’s pain let alone someone with Fibromyalgia.

But back to stress… I’ve been dealing with some pretty intense issues lately.. The big 2: 1. Problems with my Mom & our relationship.. 2. Issues with the guy I’m seeing – relationship may be ending. And I don’t think either one reads this blog. Those are the big ones but there is always in additional normal day to day stresses..

So….. On Monday night I had a breakdown. A complete emotional & mental breakdown (this does not include the meltdown I had earlier that day). I was in such hysterics that at times I could barely breathe.. You also don’t want to see what my kitchen looks like, cuz it all hit me as I was cooking stir-fry, which means three pots on the stove, each carefully times so everything finished hot at the same time. Interestingly enough I could feel myself deteriorating and the rice was pretty much done, the meat was pretty much done and the vegetables were almost done so I took the presence of mind to grab storage containers and just put everything in the fridge because there was no way I was going to be able to eat it and I have no family to feed. But I didn’t give myself enough leeway and ended up destroying the contents of the shelves with the storage containers.. Apparently I have a decent arm because I found, after the fact, empty storage containers or lids in my dining area, my office area, one almost in the living room and also my bedroom.

I ended up calling the local mental health line & spoke with a gentleman named Craig who listened & offered support..Initially, my mind had been racing with a lot of dark negative thoughts.. But I finally got calmed down enough after over an hour of venting. & I was no longer in that dark and twisted headspace.

I woke up Tuesday morning physically & emotionally wiped. Unfortunately this was one of the days that I just can’t say no. I had to drop my mom off at her doctor’s appointments because she no longer drives. I still also had to finish prepping my Cub Scout meeting.. Which meant I also had to run my Cub Scout meeting because this week got dropped in my lap on Sunday. The meeting went well and I was able to get out of my head for almost 2 hours not thinking about those big two issues. By the time I got home in the evening after my meeting, I stripped down, showered, got extra medicated and watched some mindless TV. That’s all my body would let me do – I pretty much hit the wall. Oh & eat some of the stir fry from the night before – lol.

And this excessive physical reaction is 100% due to stress exasperating the Fibromyalgia and some of my ppother chronic pain issues.

Following Doctor’s Orders

Previously, i had posted about my pain physician limiting my physical activities – not allowed to go to Cub/Scout camp. . I wrote about why & here’s a quick summary from the post

My pain was creeping up and Iwasn’t doing anything to rest. After spiking again last weekend, I had a regularly scheduled appointment with my pain doc. She reviewed my comments & my paperwork and we had a discussion She said that I was overdoing it & if I kept pushing I was going to significantly hurt myself, possibly slamming right out of my semi-remission. So, she said “No, you are not to go.”

^{My Pain Doctor *ordered* me to not go to Cub/Scout Camp.}

So my Doctor said no, & I’m glad she did! Cuz she was right.

Last Thursday I helped the Howlers clean off the canoes so they could use them. (We don’t wanna contaminate the algae or other slime or bugs of one body of water to a new environment)

On Friday afternoon I helped get everyone off, including the trailers for the canoes & equipment.

^{Cubs At Camp}

On Saturday, I finally woke at 10am on 6 hours sleep cuz my pain was keeping me up. Unfortunately, I woke in more pain than I fell asleep in.

i have a pattern – I feel worse first thing & feel good until I approach bed time.. I hurt in the morning because I’m still – I haven’t been moving or stimulating my muscles while I sleep unless of my restless legs are keeping me up of course. When bedtime approaches, I start too slow down and that makes me more aware of my body and the pain and inflammation that I’ve been ignoring comes to light. I have always been like this as a kid – I would be ill, but better in the evenings & want to go to guides or soccer or dance…

Instead of Cub Camp, Saturday activities ended up included folding laundry and reading a book in the lounger in the backyard. Not alot of activity.

So I went to bed on Saturday night in lots of pain. Woke up Sunday with lots of pain.

Sunday required me to pack for the cottage, which was fun..it took me several hours to get my stuff organized & packed (yet still left swimsuits at home).. Imagine, had I gone to camp, how much pain I would be in. Packing up Sunday morning and making a 4 hour drive home, then unpacking equipment at our storage area. Afterwards, add in me trying to unpack from camp, do some laundry and then repack for the cottage all in a few hours then drive almost 2 hours up here..

imagine if I had tried to do camp, I would not have been able to pack for the cottage, let alone make it here for at least 2 days, possibly up to 4 or 5..

So, as the days have progressed, I’m having to be careful.. We (Lilly & I) ran errands on Tuesday, and spontaneously stopped at a local conservation area to take the pup for a walk (6 km later we are both dying) .. I walked around in the cool lake water to help the pain and heat in my leggs as well as a quick dip for Lil for that & heat relief… It helped a bit..

We took Wednesday easy.. Went about 500m in the kayak before I remembered I had a webinar in 20 minutes! & that was my exercise.. And yesterday I crashed out.. not even making it outta bed until 7 – in the evening..

So while, besides yesterday, I’m doing “ok”.. I was managing pain at about a 4/10. Imagine where I would have been had I gone to camp.. Besides packing, I’d be driving 4 hours to the camp ground, help set up three sites, including tents, kitchens and shelter. Poor sleep Friday night would almost be a given, but up between 7am & 8am for breakfast & on my feet going all day, including canoeing with the kids, hiking, games, skills training, archery, helping with 3 meals a day in some capacity, etc. No breaks, no stops, no naps untill after campfire, if I made it that long, starting at 9:30-10pm start.. so in bed for midnight.

^{Cubs & Scouts Camping c at Camp Impressa}

Sunday would have consisted of breakfast & packing the equipment all up & reorganizing the trailer. Then the 4 hour drive back as I mentioned earlier..

if you add all that activity on minimum sleep, are you really all that surprised that I would have crashed on Monday. Which I kind of did anyways just from packing up with the cottage.. if without that activity my pain levels are at a 4, maybe 5. Imagine what level I would have been at had I actually participated. I figure probably near 9/10 and I tend to go to the ER between the levels of 7 and 8!

Normally, if I’m ‘well’ I can do camp Friday – Sunday, then crash for 2 days.. but I can normally make it through camp.. but I wasn’t starting at ‘well’..

So, yeah I am so glad my pain doc ordered me to stay home..

Could You Handle it? Constant Pain?

Yes, I live in pain every minute of every single day. It is the Nature of the Beast..

If someone tells you they have fibromyalgia or CFS/ME & are pain free, they are wrong. Pain free days do not happen. If someone is pain free they are either lying to you, lying to themselves or they were misdiagnosed.

Like all Fibromites, I have pain every single day. Some days is really great at 1-2/10, but it has been as bad as 8/10 for my kidney stones. Lately, I’m typically at 3 or 4.

The best I’ve been is a 1.. but a zero? No I have zero pain or painfree days.

^{I have Fibromyalgia. I live in sin every day. Yes, Every Single Day}

So, do I wake up in pain? Yes.

Do I walk my dog in pain? Yes.

Do I do groceries in pain? Yes.

Do I write my blog posts in pain? Of course.

Do I exercise while in pain? Ha – tricky one. Yes, if I can do so without triggering a flare.Do I snuggle up & watch TV or movies in pain? Yes.

Do I socialize in pain? Yup, otherwise I’d be a hermit.

Do I participate in personal adult extra curricular activities while in pain? Unfortunately, yes. There is 2 posts about this topic in the works.

Do do my Scouting in Pain? Yes, I do. Only one person in each group has any clue about how I’m doing Raksha 13 & I have become good friends through Scouting & Rainbow I’ve known grade 8 or 9, but through guiding & scouting.

Don’t I take meds to help with the pain? Yes, but he important word there is *help*.

Now think about this.

Would you be able to handle never-ending pain? Knowing that it will never, ever end? That it could flare-up & knock you out with, if you’re lucky, only a moment’s notice??

Could you handle the negative prospects, knowing that most Fibromites do deteriorate? It means you will likely get worse, not better.

How could you handle additional fibro symptoms like debilitating fatigue matched with bouts of insomnia? What about a loss of cognitive function where you can’t remember silly stuff like the phrase “tug-of-war’ during a game of Pictionary with the kids. How about feeling useless cuz you are unable to help your kid with his math homework because you don’t remember how it works – all you can say is the answer is wrong, but unable to explain why, made worse cuz you had a partial scholarship in Mathematics.

What about the other “smaller” symptoms? IBS? Thyroid issues? Sjorgens Syndrome? Sleep impairment? TMJ? Reynauds Syndrome? Muscle spasms or reoccurring ‘Charlie Horses’? Costochondritis? Muscle weakness? Myofascial Pain Syndrome? Migraines? Allodynia (touch sensitivity)? Chemical sensitivities? Light, noise or smell sensitivities? Restless Legg Syndrome? Paraesthesia?

Admittedly, you won’t have all of these all the time, but they can spontaneously come & go without warning. But is that something you can handle, with the never ending pain & fatigue?

Very few friends can identify how much I’m in pain. My bff can usually spot it a mile off. My sister & occasionally my Mom can tell by looking at me.. I have other friends & family who have learned some of the more obvious signs of higher pain levels.

So yeah, I’m in pain, even as I’m snuggled up in bed, relaxing & medicated. I am still in pain. Always.

Could you handle it?

Myth Debunked IV of VI

IT’S ‘JUST WIDESPREAD PAIN’

LOL! Aren’t you the funny one? If only….

Widespread pain is the common factor among those with fibromyalgia, though there are also particular points in the body more sensitive to pain (‘tender points’) that many experience and are often used in the diagnosis of the condition. Pain types also vary, from stabbing and burning, to aching and throbbing. There are also numerous other symptoms commonly found with fibromyalgia, from digestive troubles and fatigue, to stiffness and cognitive problems (aka ‘fibro fog’).

Symptoms not only vary between people. They can vary for the same person, minute by minute, day by day. It’s unpredictable and no two days are ever quite the same. There can be ‘flares’, where symptoms are considerably more severe compared to that person’s usual baseline; such flares can be unbearably exhausting and painful.

The extensive myriad of symptoms of fibromyalgia can’t simply be pushed through nor is it a case of mind over matter.