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..
In the Winter of 2012, I stepped on the scale at my pain physician’s office, CPM Scarborough and was flabbergasted when the number came up. 303.6. I was absolutely horrified.
From there I started to eat less and to get moving more and slowly over the years, the weight has slowly and consistently, bar some plateaus, come off..
While my regular pain physician is no longer in that office, I do, in the winter, see her colleague in that Scarborough location This Wednesday I stepped on that same scale that years ago said 303.6.
It read 189.2.
Do you know what that means? As it is the same scale, it means I have lost 114½ pounds so far.
Do you know what else that means? I’m at high school weight. No just able to fit in high school clothes, but the actual numbers?! I’ve not been this light since I graduated highschool. At the end of Grade 13 I was 191lb. So I am about the same weight I was in my highschool graduations pictures .
I’m the same weight, give or take, in these 2 pictures..
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..
So I was camping on the weekend with a gentleman friend and one night our mattress deflated so needless to say I didn’t get a good night’s sleep that night. As a result pain levels are up. But pain levels were also up a week prior and the week prior to that.
As many of you know I am a cub scout leader. Between my two groups I have six senior Cubs, called Howlers, who are going up to Scouts in September. Five of these boys are getting the Cub top section award..
2 months ago, when we finally got permission to Camp hello I suggested to Raksha that would take all the senior Cubs and take them on a camp, teaching them how to do a scout camp. Well Raksha is also currently a scout leader, but she has not done a scout section camp because of restrictions due to covid. But I have several years of troop level camping under my belt so I know what they should and should not be doing…
On of my Howler at day camp a few weeks back.
About a month ago, the Scouts and venturers expressed an interest in camping so I’m not sure how it happened but suddenly my howler Camp became a Howler / Scout / Vent camp. While I was annoyed about it kind of getting taken over from the original intent I figured that the existing older Scouts can teach the Howlers how to Camp as Scouts..
i was actually looking forward to camping with the kids.
What does one have to do with my doctor? Everything.
When my pain was creeping up, I wasn’t doing anything to rest. After spiking again last weekend, I had an appointment with my pain physician, a regularly scheduled appointment. 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 camping”.
Well, she was right.. I kept my activity level up to help finish prepping for camp.. & today, I’m done.
I could not even help shift a canoe last night. Not lift, just shift. & Today I woke in active fibromyalgia pain. My leggs were killing me.
No! Stop!! Do not Camp. Do not pass Go. Do not collect $200
Many find it hard to accept a fibromyalgia diagnosis, not just because of the condition itself but because of what it means. It can feel like the healthcare professionals are saying ‘there’s clearly something wrong with you but we have no idea what it is… there’s nothing more we can do for you’. This ties into the point of the trashcan / umbrella diagnosis.
Lack of information and fibromyalgia-specific support at the time of diagnosis can leave many feeling like the diagnosis is the end of the road, but that doesn’t have to be the case. The OP was personally told by her rheumatologist not to go online because she’d ‘fall down the rabbit hole’. I imagine the doctor wanted her to go home, give up and stop bothering doctors.
Acceptance, often a difficult and ongoing work-in-progress for many, can be done in conjunction with keeping open mind, still being open to new developments, diagnoses and tests and treatments while working to manage fibromyalgia in day to day life.
Myself, I knew my diagnosis before my doctor’s did (Did the same with my endo), so acceptance was never much of an issue for me. I think my GP had a harder time accepting it than I did.
While there’s no cure, a multi-disciplinary approach can help to some degree. The likes of pacing, pain self-management therapy, massage, acupuncture, gentle exercise, gadgets, self-help books, medication, supplements and so on will work differently for everyone; both the experience of fibromyalgia and its management will be different for each person. It’s often a case of trial and error for each individual to develop a routine and to find the tools that work more effectively for them.
My regime is a multi-disciplinary approach as mentioned above. I have a muscle relaxer, an anti-inflammatory, low level narcotics, MMJ and a small selection of vitamins. I also regularly see a physiotherapist /osteopath, RMT, pain physician for trigger point injections, & my dentist because of my TMJ, I participate in exercise which prior to covid was Aquafit for the most part. I try to watch my dietary choices, but I know I still fail there- addictions to sugar & McDonald’s. I am also involved in chronic pain support groups in my area which are currently virtual.
What hasn’t worked for me includes Lyrica, Gabapentin, Cymbalta, Fentanyl and Codeine Contin. I have given acupuncture several tries but have not found it helpful for me & occasionally detrimental. My best friend sees a chiropractor but I found that they were less helpful for me. I also still need to be very careful in the way of exercise so it’s not to over do..
Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.
Every morning is a tough morning.
I can sleep all day and still feel like I just ran a marathon.
If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
When i’m tired, let me sleep.
Certain foods make me flare up, For me that’s items like Ice cream breaded food products (like fish sticks or chicken fingers), mayo & salad dressing, KD, etc.. Some I know why, others no clue.
When I’m in a flare, leave me alone in a dark room but please check in, even if I don’t answer. It makes me feel cared for & loved .If I am flaring and I am responding, I’m likely asking for a ride to the ER.
Yes, diet matters, but in flare mode, all bets are off.
Yes, my face is swollen. No, I didn’t gain 5 pounds overnight… Well I could have gained, but not on my face.. So, Yes, that is a tell that I am in a flare.
I have many different sizes of clothes in my closet to accommodate flare vs. non-flare days. I currently have clothing from a medium ( very generous medium) to 3x.. I’ve lost weight, so likely only a few items & eventually they will go too.
Fibro Fog sucks. Ya know when you get absent-minded every once in a while? Misplaced your keys? Misread something? Forgot to water the plants? That’s Brain or Fibro Fog. While it happens to everyone at some point, it not the norm. For people with Fibromyalgia this is the norm. Every day. I have even lost my train of thought, mid-sentance. It happens enough that those close to me don’t bat an eyelash when it happens. Some even see it happening & will remind me of what I was saying. The worst, is fogging out when I drive & I love to drive, but have to be super careful to make sure I am clear minded.
Ask before you touch. Some days, I can barely tolerate the feel of clothing or even my hair on my skin. When I’m ok, give gentle hugs please — my skin & muscles may still be tender. But if I give you a bear hug, you can give me one back!
Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
Allergies play havoc on my body. Scented products like perfumes & body products are typical culprits Sometimes I don’t even know I’m allergic until I experience it, So it’s a bit of Russian Roulette when I go into public because I can’t control what scents other people wear. Food allergies/sensitivities do not make life any easier either, especially when eating out.
I am a human barometer ( there’s a post around about that.. I can typically tell it’s gonna be too cold, too wet, too hot.
Yes, i am on medications, sometimes even alot of them. I have a decent relationship with the pharmacy staff, and I know exactly what all my medications are, the dosage, and why I’m on it & how it helps.
To me, car rides are joy rides cuz I really love to drive. I need to stop every hour or two to keep my legs from going numb or seizing up. It, for me, is so worth it! But so many with fibro feel differently than I do & equate it to a highly painful roller coaster ride.
Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
I can get moody. You would be too if you were in pain all the time, be patient with me.
Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
If I cancel my plans with you, don’t be mad.. Remember, I made plans with you, because you are important to me. I am trying and obviously want to hang out with you, so please keep any nasty commentator yourself as I already feel guilty.
Your friend with Fibro that says they have no pain doesn’t make me feel any better. Plus if they have no pain, they may not have fibro cuz *all* Fibromites have *some* level of pain at *all* times Alternatively they could simply lying either about having fibro or about being totally pain-free. Also, just cuz someone says they are “Good” that’s does not mean pain-free
“You should exercise.” ROTFLMAO. Have you considered going to the gym while you are in the middle of the flu with body-wide aches & pain, fatigue? Didn’t think so, so how can you expect me to when I have body-wide aches & pain and fatigue? Yes, I do exercise, but I’m not a hypocrite. Do you know how long it took from me to go from bobbing in the water during aquafit to get to my current level of exercise? Years!! It helps, that I have lost weight. Before you use me as an example of of someone with fibro who is ‘fit’, remember that I started my journey to become healthier & to increase my fitness level in the winter of 2012, almost 9 years ago. And I would not consider myself ‘fit’
Going to the doctor makes me sad & sometimes overwhelmed— it’s a reminder of my condition. And it doesn’t help that I have at minimum a half dozen medical appointments each month – GP, Pain Doc, RMT, Physio/Osteo therapy, Gyn, Neuro, Dental, Psych, mental health support groups, and one offs for tests like bloodwork, ultrasound, x-ray, MRI or CT.
There are zero no-pain days, but my low-pain days are my happy days. So if I’m looking good and acting good and I’m social, I’m better, right? No, just a good *low* pain day. Fibromyalgia is chronic & will not go away
Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful. Unfortunately, some of that downtime does not even permit blog writing because the pain or fatigue is*too* intense, so I have missed posts.
Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
if i am being a dick about my health, you will not change my mind. I have to figure it out myself. For those in my life who put up with that for years, I am sorry.
Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
Yes, I have depression. No, it’s not because of my fibro. My depression started at age 16, but fibro, we believe, started from Mono when I was 19-20. So, obvs they started at different times plus I do know the triggering event that started my depression.
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.
Most of the time when I have a crash in the holidays I end up in the hospital because of how bad the pain can get.. I usually manage for a few days at a level 7 or 8 out of 10 and after that, I’m in the ER.
This year, while the pain has been up, it hasn’t spiked to that level yet. And I hope it doesn’t. But unfortunately I have been in less higher level since the 26th of December – so, 17 days days now, which is unusual, for me… A severely sucks..
But I called my pain physician in Scarborough for an appointment on Monday & see my other pain doctor Tuesday. . With pain levels at a 5 or 6, I can deal, but only to a point.. after more than 2 weeks, I’ve hit that point..
Montreal Pain Researcher Joins Canadian Medical Hall of Fame
By Martin C. Barry
Dr. Ronald Melzack’s interest in studying pain started off as a scientific problem, much like studying vision or hearing. “It was just plain curiosity about pain,” he said about his recent induction into the Canadian Medical Hall of Fame.
It wasn’t until he was a postdoctoral fellow in medical school at the University of Oregon and “met all kinds of people in terrible pain that could not be treated” that the study of chronic pain became his lifelong passion.
Last month during a ceremony in Montreal, Melzack was inducted into this country’s medical hall of fame along with four other individuals recognized for winning their place in Canadian medical history. Located in London, Ont., the hall of fame is dedicated to honouring Canadians who have changed the world’s health care landscape.
“I’m thrilled,” Melzack said of becoming a member of the Hall of Fame that has honoured such medical pioneers as Banting and Best, known for their discovery of insulin. Melzack’s pioneering research into pain mechanisms and pain control spans more than a half century and has had a major impact on every field of medicine dealing with patients who suffer from pain, in particular chronic pain.
Ronald Melzack is “thrilled” with his induction into the medical hall of fame Photo: Martin C. Barry
Born in Montreal, Melzack first became interested in the connection between pain and environment at McGill when he studied the reactions of dogs to pain stimulus. For the first six months of their lives, one group of dogs was raised in kennels while the others were raised in homes with small children. The dogs who had no interaction with children reacted more to “being pinched.”
A leader and visionary in his field, Melzack made four major contributions in the field of pain.
With the support of Dr. Joseph Stratford, Melzack co-founded the first pain clinic in Canada known as the McGill University Montreal General Hospital Pain Center where he served as research director from 1974 to 2000. The clinic is known to be one of the best organized centres for pain treatment in the world.
In 1965, Melzack developed the gate-control theory of pain in collaboration with neurophysiologist Dr. Patrick Wall.
The theory produced an explosive growth in research and resulted in experimental and clinical psychology becoming an integral part of pain research and therapy. Then in 1968, Melzack published an extension of the gate theory, proposing that pain is a subjective, multidimensional experience produced by parallel neural networks.
Another breakthrough was the development in the mid-70s of the McGill Pain Questionnaire, now the most widely used method worldwide for measuring pain in clinical research. It was developed during Melzack’s postdoctoral years, when he recorded more than 100 words to describe pain. Then with the help of a statistician, he obtained quantitative measures for each descriptor.
His fascination with phantom limb pain led to the publication in 1989 of the “neuromatrix theor y of pain.” In it he proposes that we are born with a genetically determined neural network that generates the perception of the body, the sense of self, and can also generate chronic pain, even when no limbs are present.
The world’s knowledge of pain might be a different today if Melzack had chosen to pursue a different path. While working toward his postgraduate and doctoral degrees during the early 1950s, his brother, Louis, was establishing the foundations of the Classic Book Shops chain that would eventually become one of Canada’s leading retailers of paperbacks.
“They wanted me to go into the book business and I didn’t want to,” he said. “By this time I was really hooked on psychology. Louis thought an academic life was nice, but I would never really earn a living.”
That’s when Dr. Victor Goldbloom, who was then a young pediatrician and a regular customer at one of the book shops, advised the family that they should give the future Dr. Melzack their full support. Goldbloom remains in touch with him to this day.
Mrs. Hull, whom Melzack had met in the course of his postdoctoral research, was instrumental in developing the McGill Pain Questionnaire. A diabetic, she experienced phantom pain following the amputation of her legs. “She would get throbbing pain, burning pain, crushing, all these adjectives,” Melzack said. “And then I began to write down all these adjectives. And then other patients would use other adjectives – a variety of them.”
Pain researchers are getting a better understanding of a condition known as fibromyalgia, according to Melzack. “The stress system is highly involved in it,” he said. “We know that there are trigger points, sensitive areas in the body where you’re likely to find the same pattern in virtually everybody, which means that these muscles seem to be under some strange tension for reasons not known. It produces depression and is activated by depression. But now there’s so much more research on it and it’s become so prevalent.”
Fibromyalgia 
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