Posts Tagged ‘Fibromyalgia Pain’

Flaring! Flaring bad!

November 23, 2021

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

November 5, 2021

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

August 27, 2021

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?

June 22, 2021

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

May 23, 2021

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.

Pain Scale

May 20, 2021

Most people don’t think that much when asked what your pain is.. “10 being the worst pain imaginable” Ok…but some people have an active imagination others not so.much…

Some people would think a broken arm is the worst feeling imaginable – Seriously?!?.. Some choose childbirth & yeah that hurts like an Fkn S.O.B…Or so I’m told.. Similar pain levels as Kidney stones.

Ok.. I’ve had kidney stones – they severely suck, but I only rated the kinda pain as an 8/10.. Cuz there’s worse pain that I could feel.. Like having limbs cut off with a chainsaw without the benefit of anesthesia.. Yeah, that would be my 10..

So when I go to the ER & I say I’m a 7/10.. They think yeah ok.. then I tell them what I consider to be a 10.. then they look at me differently.

So think it through the next time you talk to your doctor or someone asks your pain levels… & Clarify what you consider your 10 to be.

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.

Welcome to May!

May 1, 2021

Welcome to Fibromyalgia Awareness Month!

Wear Purple for Fibromyalgia Awareness Month

What is Fibromyalgia? Fibromyalgia is a chronic pain condition characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. The current theory behind why is that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non-painful signals.

Why is Awareness Important? Because there are many incorrect assumptions and false facts about this disease & the people who have it. People need to know that just because you can’t easily see my pain on my fatigue or digestive issues or cognitive issues or.. etc.. that does not mean it is not there.

Why May? Initially, Fibromyalgia Awareness Day started exclusively on May 12 – the birthday of Florence Nightingale. Why her? Not only is she the mother of modern nursing, it is believed that she has Fibromyalgia…After returning home from the Crimean War in 1856, her diary entries are suggestive of the classic pain and fatigue condition that we have all experienced. So May 12th became the date for Awareness for Fibromyalgia, ME/CFS, & MCS.. But why or how did they get that extended to the whole month? I have no clue tbh. .

Why should you care? Approximately 2 to 4% of the population has fibromyalgia. In the US, that’s about 6 to 12 million people, In the UK that’s about 1⅓ to 2⅔ million people. In Canada that’s about 750,000 to 1.5 million people. That is alot of people. So, if that is the stat for the entire world, that means there are 153 to almost 307 million people worldwide with fibro..That is A LOT of people.

So what? That’s still not me. So why should you care, even with those stats? Well, anyone can have Fibromyalgia. So your son, your daughter, your sister, your brother, your cousin, your friend, your mother, your partner. Anyone of these people could get fibromyalgia.. That also means if you know 100 people, 2-4 of them will have Fibromyalgia. So, you *do* know someone with Fibromyalgia.

How? Simple. Ask questions. Do some research to find out a little bit of fact (not fiction) on fibro. Be cognizant of your behaviour. Support those in your life with this condition – off help & let them know you believe them. Wear a purple ribbon to show your support Wear purple!!

Masks for May

April 29, 2021

May is Fibromyalgia Awareness Month

May 12th is Fibromyalgia Awareness Day.

My niece is in her final year of a specializes Illustration BA program. I asked her for some design ideas for masks to celebrate.. or.. acknowledge.. Spread Awareness! For Fibromyalgia.. She is still working on her final projects,so she’s been super busy & has not had a chance, but will shortly. Below are some ideas I stole that I think would work or something similar. Thoughts?

Purple Ribbons with “Fibromyalgia Awareness”

Purple Ribbons with Butterfly

I wear purple for… My Sister.. My Friend… My Mom.. My Aunt.. My Daughter.. My BFF,.. My Wife.. My Brother.. My Neice.. etc..

Stylized Ribbons.. I also have the online alias of NeonRose, so the rose on the left is totally appropriate for me.. 😉

Ribbons & Miscellaneous Text

I also have a black shirt that says “This Shirt Turns Black When I’m in Pain”. While I wasn’t planning on having black masks I was considering the dark purple and this would work on that as well.

Thoughts? Opinions? Suggestions?

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.