Posts Tagged ‘Pain’

Food Choices with Fibro VII

September 28, 2021

The study also showed that low alcohol drinkers have lower severity of fibromyalgia symptoms and better quality of life than non-drinkers.

Alcohol intolerance is a rarely seen symptom yet most people who have FM or ME/CFS find that they can no longer drink much, if any, alcohol.

Alcohol, no matter the kind, can be devastating to Fibromites.

While a few are able to occasionally have one or two drinks with only minimal problems, for others even a very small alcoholic beverage can trigger a severe flare or relapse that may last for days, weeks or sometimes even months.

So, for most, alcohol is so obvious that it’s was not even originally in the list. So, you have to stop drinking alcohol.

On that note, I also have a fairly high alcohol tolerance (when not mixed with THC) that I inherited from my father.. I used to be able to drink most of my friends under the table.. For the most part I still can. But I have noticed at the club I am toast for days afterwards but have since realized that it’s the dancing at the club, not the alcohol that is responsible for that.. My BFF, as she has increased in weight has been slowly had her alcohol tolerance increase. I don’t know if she realizes that it from the weight gain & when she loses it again her tolerance will drop. ☹️

My Hair Hurts

September 17, 2021

I owe an apology to many of the ladies is some of the various fibro Facebook groups I’ve been it. There have been many conversations over the years about Fibromites whose *hair* hurts. Turns out it’s a form of allodynia

I always assumed that they were talking about head pain but not the sensation that it actually does feel like your hair actually hurts – not your scalp. You see, over the years I have had a bunch of concussions.. Three of those concussion inflame on occassion, so I will have swelling & tender points on my scalp. I can even tell which incident it was.. One of my bike accidents? Falling on the ice at school? Accidentally bashing my head against a wall?

Well, nope, that is not the feeling it turns out. Those repetitive reactions are *not* what these women mean. I found that out today.

I was brushing my hair like I normally do, and decided to wash my hair. When I do this because my hair is so thick I tend to flip my hair over and back brush to get the hair to relax so I can more effectively clean it. Well my head felt weird bending over and putting my hair down.. I started your back brush from the base of my skull and I was good until I got about 4 in down then – Oh! My! God!! My hair was in agony.. Not my scalp – My Hair!

So I stopped brushing my hair stood up flipping my hair back & again – Oh My God! More excruciating pain. I had to have a shower because I was stinky from heat sweat, I still had to do something with my hair. I put it in a quick loose bun that was clipped in not elasticized in.. I found that was the least painful option for hopping into the shower..

I can still brush my hair normally and it doesn’t bother me but if I could try to do anything else for my hair right now, I’m f**ked..

So I owe these ladies an apology cuz I was thinking their issue was not so bad cuz my version wasn’t too bad. I should know better.. Cuz my Fibro is not her Fibro & her Fibro is not my Fibro.

A little research yeilded this information:

Apparently the number one culprit for this kind of pain is not washing your hair.. The oils that your scalp produces naturally accumulate around your hair shaft, and if not cleaned can promote an overgrowth of yeast on the scalp. It is apparently the region around each hair, pore, or follicle that is becoming inflamed, which translates to sensitivity that can feel like your hair hurts.

Wearing your hair in the same style, like a high ponytail, cornrows, buns, or braids for days at a time, can also contribute to more pain.

How can we help it? It all depends on what hair type you’re starting off with. Finer hair can’t go multiple days, because it produces more oil, Yet curly or gray hair can, as it produces less. As a rule of thumb, people with oily hair should shampoo every day or every other day. Dry or coarser hair should do every three to four days.

I know we tend to be exhausted an washing one’s hair is an exhausting chore, but consider that it might be worth it.

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..

It Finally Happened Again

August 13, 2021

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 you damn straight I’m going to make it up to the day.

RLS then Exercise.. Uh oh!!!

June 29, 2021

On Friday last week, I posted about issues with my RLS, but that wasn’t the end of it.

As I said, on Wednesday night I was having problems getting to sleep, big problems due to restless leg syndrome in all four limbs – very rare. So I went on the treadmill for 20 minutes then snuggled nicely into bed.

Walking on a treadmill can help burn off the restless feeling when my RLS flares.

Thursday morning, I woke up & my legs had felt like I’d run before full marathon with zero prep the day before, instead of just 20 minutes.

So I started with the pain meds, the anti-inflammatories and the muscle relaxers that I do every day when I get up. The unexpected pain did eventually start to lessen more.

But Thursday nights are one of my cub nights with my third years, howlers from both packs. We’re helping them work on their Seeonee Award.

Fortunately, when this meeting was planned we weren’t aware if we were going to be in person or not so we planned a virtual meeting. The kids wanted to play Drawsaurus which is an online version of Pictionary. Lots of fun!

Drawsaurus is an online version of Pictionary! The boys love it!

So I didn’t have to do anything. I did not have to prep much, other than just set up the game which took about 30 seconds. We played 4-5 rounds I believe. We could do this because it was a smaller group, just the four of them tonight.

So as we started we are having fun and I’m relaxing. Silly me, I text my sister and ask her if she wants to go walking tonight after my meeting, which we normally do on Thursdays.. Of course she responded in the affirmative.

I was actually starting to feel better at the end of the meeting – Yay!!

I make it to my sister’s for 9:00pm and we leave shortly thereafter walking the dogs. Our pups were both very well behaved tonight, strangely enough – they usually do not start calm & maintain that for most of the walk.

So our walk was uneventful and we walked the neighborhood just south west of us. There was nothing extraordinary about our walk in the way of physical exertion.

There was a coyote but that’s a different story altogether.

One thing about that walk however was the length. It was almost 11:00pm by the time we got back to her house. In steps that is over 10,000 and about 5½ miles (no clue why my Fitbit is still in miles)

God Help Me! Five miles & 11,000 steps for one casual walk.

So take a guess how I felt afterwards. Horrible! My leggs were very painful. I’m thinking a 6 or 7 out of 10 on my pain scale..

I had a shower and the hot water was lovely- everything seemed to relax under the hot spray. Unfortunately it would return when the heat got moved to another spot. I think I need to go snorkeling in a hot tub! LOL..

So I medicated again, including my MMJ…

Guess how I felt the next day…


I was actually expecting to be in a flare the next morning… Surprisingly, my Leggs were sore.. pain at a 3, 3½.. was expecting 7 or so.

So, Yay! Not as bad as anticipated!

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.

A Letter from Fibromyalgia

May 6, 2021
A Letter from Fibromyalgia

Hii!! 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.

Pain pills, sleeping pills, energy pills, anti-anxiety pills

You will be put on pain pills, sleeping pills, energy pills, anti-anxiety pills, antidepressants, anti-epileptic or anti-convulsant pills. You will be told you are suffering from anxiety or depression, given a TENs unit, get massaged. You will be told that if you just sleep and exercise properly I will go away, told to think positively. You will be poked and prodded. MOST OF ALL, you will not taken as seriously as you feel when you cry to the doctor how debilitating it is to live your life, every single 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.