I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition.
With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits put on me by my medical conditions. Like Christine, the author, I have a limited amount of energy that I can use each day. Some days I start with more energy, more spoons. Some days I start with less energy, less spoons.
I hope this gives you a new understanding about what it is like to live with chronic pain and chronic illnesses like ours.
My next post is about The Matchbox Theory which I think is actually a little more apt.
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..
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.
This is a series approximately 10 weeks long, looking at food choices.
It’s been reported that beyond OA, fibromyalgia is the most common musculoskeletal conditions. Over 12 million Americans have been diagnosed with fibromyalgia that’s about 4%.
Sticking to a personalized fibromyalgia diet is one of the ways you can manage the pain and get more out of life.
Most people with FM know the necessity of taking it easy when pain flares. Many, however do not realize how much your food choices impact your fibro symptoms. Because it not studied extensively there is not much data on have exactly particular food ingredients and items impacts us. In a recent nutritive article published in Rheumatology International, small study of 101 FM patients determined for this group, that 7% had food intolerance or allergies, & 30% had made changes in their diet to help their situation.
While there is no particular diet suggested for FM treatment, some Fibromites have noticed a correlation between poor food selections & fibro symptoms. One nutritionist suggested that Fibromites seem to have excessive level of a dependence on ‘luxury’ foods (foods easy to prepare or buy premade) due to the inability to prepare & eat health choices on a regular basis Unfortunately, for many it leads to weight gain which leads to being overweight which can aggravate many fibro symptoms.
“Luxury Foods”are ones you can make fast or just pick up. . The examples above: Tim Hortons Donuts, KD, Chef Boarder, McDonald’s, KFC, Little Cesar’s..
Living with fibromyalgia, your food selections could be making your pain or other symptoms worse. As each of us deals with fibro differently, there is no one-size-fits-all diet, but making changes can help!
So on Friday or late Thursday my sciatica flared up, because of my osteoarthritis… And with Cub camp on Saturday there is no way I would have been able to function.
So I went to the ER, the first time since covid started, and possibly even the first time in 2 years…
Previously when I went to Lakeridge health Oshawa I was expecting compassion, respect and dignity. I’m sure if you go back far enough you will see posts of getting policy changed in the Scarborough hospitals.
On Friday the first thing the doctor said to me was “So I hear you can’t afford Toradol?”” well that’s professional. He agrees to give me some Toradol after I saw I don’t want narcotics.. Toradol in an anti-inflammatory..
Every other time I’ve gone to the emergency department in the hospital, but Centenary, Scarborough Gen, or Lakeridge Health Oshawa I have been given an injection of 30 mg of Toradol. Frequently I am also given another 30 mg tablet to take it home later. And occasionally the doctors do offer me a muscle relaxer as well
All I got on Friday for a chronic pain flare bad enough for me to drag my ass to an emergency department in a pandemic was 10mg of Toradol. There is absolutely no way that someone with chronic pain, specifically in a flare with pain spiking, the 10 f****** mg of Toradol is going to do anything.
The one thing it did, was put me in tears.
I ended overdosing on naproxen at home just to get enough relief so that I could work with my Cub Scouts the next day.
Before some dough head makes a comment about me being a Scouter while having chronic pain. If I didn’t do anything because I had pain I wouldn’t be doing anything at all – I’d be a freaking hermit. And I’m very much enjoy working with the kids to allow that.
And before someone else says let somebody else run the meeting, I was the Scouter in Charge on Saturday. I was the one who actually knew exactly what we were doing, leading several of the activities & the only one familiar enough with the area to run a hike… I am also the one who, if something happened, I would be the one responsible whether I was there or not. So your damn straight I’m going to make it up to the day.
Yes, I 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.
As you’ve seen by some of my other recent posts, I was recently in the emergency department due to pain. The pain in this case was not due to fibromyalgia or endometriosis or any of my other chronic conditions. Or at least I didn’t think so. I was concerned about a blood clot due to the AshraZeneca vaccine I had received the week prior.
Summary of that ER visit, I don’t have a blood clot. I’m fine.
At the ER, due to possible AZ issues, *not* Fibromyalgia, and *not* OsteoArthritis.. So it’s still been over a year since me last FM/OA pain crisis.
But the point of this post is that I have not been to the emergency room since before COVID started. 10, 12, even 14 years ago I was a frequent flyer at Centenary Hospital in Scarborough. I was there about once a month and it was not unusual to be there multiple times in one month. It actually got to the point where I knew the department head by name, and he knew me, by name. In the grand scheme of things, that not generally a good thing.
Even after I had moved back from Scarborough to Oshawa I was still going to the emergency room every 2 to 3 months due to my fibromyalgia & OA pain.
Butt as things have gotten more manageable, as my weight has decreased, my fitness level has increased, my diet has improved, my medications have been cut back and altered in a positive way, I have become healthier and healthier. I have, with the help of my doctor’s, been able to better manage many of my symptoms of Fibromyalgia & OA.
The other day I was actually thinking about when my last visit to the emergency room was. I realized that it’s been over a year because my last visit was prior to COVID shutting down the world last March. I think I may have been in the ER after Cub camp on the family day weekend in 2020.
But think about it. I used to be going for regular ER visits to help control my pain. Now, it’s been over a year since I’ve been in a the RR, and still not for FM/OA related pain.
Yes and No.. Referred to as both a ‘wastebasket disease’ and ‘umbrella term’, fibromyalgia is often seen as a catch-all for symptoms that don’t fit other conditions and can’t be easily explained. Seeing fibromyalgia as a trashcan diagnosis links with the assumption its not a real condition in and of itself.
Yes
Fibromyalgia encompasses a myriad of symptoms, though many people also have additional diagnoses to account for other problems they’re experiencing. I don’t experience fibromyalgia in a vacuum; I also have CFS/ME, Osteoarthritis, Joint arthritis, Depression Hypothyroidism Endometriosis, IBS and Myofascial Pain Syndrome. and so on. I was diagnosed with fibromyalgia in 2006 by a rheumatologist who said I had “Symptoms consistent with Fibromyalgia” was further confirmed with the trigger point test. I even had to correct a doctor who didn’t know exactly when the points are. As a patient of Dr Bested at the Environment Health Clinic and eventually her private practice, she had me running tests out of the wazzo. The results just confirmed yes I have fibromyalgia. I was also ‘diagnosed’ with CFS at that point, but I know if been dealing with even longer than fibro.
No.
Because fibromyalgia can’t be objectively tested and measured, it’s a challenging diagnosis for many doctors to accurately reach and it’s made harder still when healthcare professionals are either sceptical, unsupportive or totally disbelieving of either fibromyalgia itself or the symptoms you’rel presenting them with.
Although it can involve various symptoms, the current list I’m aware of for possible symptoms is over 300 long. Any of these can be experienced differently by each person.
Fibromyalgia is a distinct condition. It may overlap with other illnesses but classic symptoms are still typically prevalent.
So, I posted on the 13th of April about how crappy I was feeling on Monday… While I’m not having a problem getting my shower door open, I’m still feeling like crap.
It’s been a long time for me that I’ve have sustained a higher pain.level over more than a few days..feeling crappy started Sunday morning.
If you ask me what I did on Saturday? I went for a drive. I love to drive, but with the price of gas right now, it’s a little expensive. So, I has in & out of the car & driving around.. Even hopped on the highway to drop of my BFF’s birthday pressie..
So nothing was done out of the ordinary that could trigger a flare. To be honest, I’m surprised I didn’t flare the weekend before at the cottage when I *did* do something that could cause a flare – helping my Dad move the trailer.. I just don’t get it
And to top it off, I’m not sure what my body is trying to do. My pain levels are up. And all I have thinking about is fentanyl…. I just don’t know if it’s a want for pain relief or if the want is to be oblivious to everything cuz of the medication, or just to get high..
Not all disabilities are visible! In fact, the majority are invisible.. Here is a ist of many of the conditions that are not readily apparent & are ‘invisible’. This list is by no means exhaustive
Chronic Pain
Arthritis, both rheumatoid and osteo.
CFSME or MECFS
Fibromyalgia
Mental Health including but not limited to depression, anxiety, PTSD,, bi-polar, & schizophrenia…
Sleep disorders including sleep apnea RLS and TMJ
Diabetes
Epilepsy
Digestive issues such as Crohn’s, Celiac, Colitis, & IBS,
Endometriosis
HIV or AIDS
Chronic migraines
Lupus
Lyme disease
Multiple sclerosis or MS,
Severe Food & Chemical Allergies including Gluten.
Renal failure & heart failure
Brain injury including concussions, stroke & meningitis
Spinal Injuries
Fetal Alcohol Spectrum Disorder,
Narcolepsy,
Repetitive stress injuries like tendonitis & carpal tunnel syndrome
Fibromyalgia 
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