Yes, I am rehashing from an old post but I’ve added alot more to it.
March is Endometriosis Awareness Month
March is Endometriosis Awareness Month
What is Endometriosis? In layman’s terms, it’s when the cells the are supposed to live in the uterus also live outside the uterus.
What does that mean? Well, it means those misplaced cells act like they would it they were in the right place. They have the menstrual cycle, but it can be on the bowel, on the outside of the fallopian tubes, uterus, ovaries, etc, on the rectum, on the bladder, on the kidneys, basically any of the organs in the abdomen. But not only that, these cell can migrate anywhere within the body. This includes more serious, but rare places like the heart, lungs, the spine, and the brain.
What does it feel like?It hurts!! Most women have a regular menstrual cycle. Some women have bad cramps and heavy bleeding. Us with Endo have horrible cramping, debilitating pain that last the duration of the cycle & for up to a week prior & after, and those cycles are irregular & erratic – some times lasting up to 2 weeks, sometimes with only a week, or days, in between. And remember, this happens in those cells that have meandered into the rest of the body, so not all the pain is necessarily in the lower abdomen.
Completely debilitating cramps
How does it differ from regular period pain? Lately there’s been pain simulator videos on the web by somedays.com. They use a tens machine to simulate period pain. Average period pain is 5-7. Endometriosis pain is usually a 9-10. Now, this is not a pain scale of 1-10 but the settings on the machine. Here’s one such video of a US State trooper. He says he’d call in to work sick at 6, but made it to a 10. Here is a vid of some young health professional dancers. I love the expressions these guys make. One tapped out completely at 6, but the other two did make it to 10 – barely.
What else can happen? In addition to debilitating abdominal pain, there can be issues with infertility. Studies have shown that 30-50% of women experience fertility issues be it the inability to conceive, high risk of miscarriage or just the fact that for some it can really f*”kin hurt to engage in sexual activity .With tissues not being where they are supposed to be, the women’s reproductive system is turned into a war zone. Cuz the tissues are not where they are supposed to be, internal and things very easily get rubbed the wrong way. Add to that the common co-morbidity with Irritable bowel syndrome ,which in and of itself sucks, and other digestive issues. Other symptoms can include painful urination, blood clots, bloating & water retention, shortness of breath, fatigue, depression, mood swings, leg cramps, and other general body wide pain.
What if I think I have Endometriosis? Stand your ground with your doctor. Do not let him/her/they brush off your symptoms. A GP is not equipped or trained sufficiently to make this diagnosis. Typically, they try a birth control pill or two or three, or the patch and for some that will help sufficiently. But if it doesn’t, get a referral to a gynaecologist. Again stand your ground. If you believe you have endometriosis and medicinal treatments like lupron and Depo-Provera don’t help. Push for a laparoscope if you can afford it.My Gyn did not believe I had Endo, but when I pushed for my lap, she found it all across my abdomen, so much so that she didn’t have long enough tools to excise it all. Advocating strongly for yourself will significantly reduce your time to diagnosis. From the time I first started having pain in my teens to diagnosis was about 10 years, a typical duration.
Thee tests I had done were all negative, except that my hypothyroidism medication was at too high a level because of my weight loss.. So that’s been reduced
COGNITIVE IMPAIRMENTS TEXTING
The testing, imo was inconclusive. His word memory test was too easy to remember.. Dog. Tree. Ball. They’re related. Dog pees on tree, dog plays with ball. The shape he had me draw was a symmetrical pattern over lapping itself. With my math background that kinda thing is easy & not sure how it impacts my memory
NEXT STEPS:
So the meds are changed with a follow-up in three months.. if there’s no improvement, I’ll explain why I thought the test was inconclusive & request a redo
I know you’re trying to be helpful but your suggestions of yoga or CBD or massage or med XYZ, but I’ve tried it all already..
Medications.
In my case, I have tried all the meds. The only one I haven’t tried is one that’s available in the States but not in approved for use here in Canada. It’s called Sabella.. Specific medications for fibro include lyrica and gabapentin did not help and in fact, the gabapentin made me significantly worse – not good
I’ve been on any number of narcotic medications, starting at 20 Tylenol 3’s a month (that was a joke, way too insignificant) to high dosages of codeine contin & Fentanyl.. Fortunately, those were not at the same time.
I’ve also been on several muscle relaxing medications. Unfortunately, the one that works the absolute best is not covered my government benefits, but the one that is covered is adequate unlike many others.
i have been on anti-inflammatoriez for many many years due to Endo then the arthritis. Unfortunately, it seems to have started causing increased bruising in the last year or longer. As a result, my GP has taken me off my regular double daily dose. I now take an otc anti-inflammatory “as needed. “
I have actually been on various forms of medical marijuana and just as I’m finding the perfect balance to help, I start having issues, problems that might be due to cannabis products. We are still trying to figure out the cause because even tho I’m off *all* marijuana products, synthetics oils and otherwise, I’m still having regular issues. So the docs got no idea what’s going on. Read more here.
Exercise!
You’re kidding me, right? Do you know how hard it is to exercise when your body is screaming at you? Even Yoga.. Or swimming.. Or walking.. Even these simple every day activities, when you have severe Fibromyalgia can be unbelievably difficult. While it can help some it does impact others in a negative way, deteriorating their health.. I am lucky. I made a decision 10 years ago when I hit 303lbs on the scale at my doctor’s office. So I did start the long and painful, excruciating process of doing a smidge more activity, very slowly increasing what I was doing.
So yes, now I can go swimming.. well, walk in the pool, lol.. Before COVID I could participate in an aquafit class, but sometimes no more than bobbing in the water but I made the effort to be there.
Yes I can walk further, but that happened with great encouragement from my sister. Over the last six years, we would get together weekly to walk. On some days I can’t walk very far, but I try. This encouragement has led us to talking and we have become very good friends now. An excellent side bonus!
Yoga can still be very painful, depending on the speed, the instructor, the modifications, the positions we use and the flows (God I hate flows). I do have favourite positions like bridge & pidgeon that surprise people. But it took me 10 years to get to this point and it can still very much hurt.
Was at the gym, stepping around in an Arriba class earlier this week and crashed out that night… Barely made it to the time I take my night meds. Even took extra early pain meds to help dampen the pain so I could sleep.
The advantage of me having the gym membership at my local YMCA is the plus membership I fork out the extra for the plus membership because it includes additional99lounge, steam room & the infamous hot tub. The hot tub is my life saver. Can’t wait for my tat to finish healing so I can send all the way in to my neck
Diet.
These include gluten free, Keto, vegetarian, vegan, anti-inflammatory, Noom, high protein, Mediterranean, Weight watchers, diabetic, South Beach, intermittent fasting, paleo, raw foods, Aktins, etc… While some of these would works for some, none of these really helped me or could help me. Between complexity, my will power (or lack thereof), cravings and food sensitivities, none of these actually worked for me. My choice of “diet” is moderation and avoiding a lot of prepackaged foods. The closest to this would probably be the weight watchers program but I found their point system to be complicated especially with the cognitive issues with my Fibro. This adaptation has also helped me lose weight. So I still do drink Coke, probably still too much, but significantly less. I’ve almost 100% restricted out the xanthan gum, guar gum and carrageenan additives as they typically cause my IBS to flare which would start putting me in starvation mode, which makes maintaining, let alone losing weight even more difficult. Not to mention get some of these diets require me to eat foods with these additives in them.
I do treat myself every once in a while with a bowl of sorbet. Very infrequent use of these chemicals it is permitted because my body can tolerate them in very very small doses.
Alternative treatments
We’re talking massage, acupuncture, physio, osteopathy, chiro, etc. Physiotherapy does not really help the fibro other than adjusting exercises that could be beneficial to help increase strength, endurance or flexibility. In many cases this does not improve the pain due to fiibro in patients.
While chiropractic medicine helps some with fibro, it actually made my situation significantly worse.
Osteopath does help but it mostly treats my other conditions like post concussion syndrome, migraines or endometriosis and general health and wellness. Does not help fibromyalgia specifically that I know of.
Acupuncture does absolutely nothing for me or any of my medical conditions. I have tried it a number of occasions and hasn’t worked with any of the practitioners. One lady treated my Endo & gave me migraines. Any further attempts for any other issues have resulted in absolutely not relief
Massage can wonderful. If you get an appropriate RMT who understands fibromyalgia and will listen to you & adjust when you say “Ow!” it can help. Unfortunately it also tends to be very short-term
Injections.
For 15 years now, give or take, I have been getting injections of a medication called Marcaine which is a sibling medication to lidocaine. These I get with my pain physician who was initially in Scarborough and is now in Oshawa. These shots have helped over the years for anywhere between 4 days and 4+ weeks depending on the level of my pain
In the winter I also get epidurals up to three times each winter depending on my pain levels at that time. This tends to treat my osteoarthritis in my lower back, not the fibro pain. In doing that however, it reduces the OA pain, making the fibro pain more manageable.
lidocaine infusion. This is the one last treatment I know of. This is when they attach an IV and add lidocaine to your blood system. This is my next course of action for treatment. I have an ECG scheduled for next week so that I can access this treatment. Once it’s been verified that my heart is ok, I can and will book the treatment. I will let you know how it went.
Thank You, But..
Thank you for your concern for me and your helpful intentions, I’ve been dealing with this a long. Thank you for your pearls of wisdom persistent unsolicited advice is actually inconsiderate & thoughtless. I *do* know my body & I do know what works for me. It comes across to those of use dealing with these issues like we don’t know anything about my fibro and that you know more than me & my doctor. Honestly, in most cases, I do know more than my doctor. So please stop making suggestions cuz what worked for your friend’s cousin, Sally, I have already tried. or that your Dad’s friend’s daughter was cured, because it can’t be. I don’t need anyone telling me how other people’s treatment going to work for me because her fibro is not my fibro.
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..
Since my last post, the new nurse Christine was able to get my meds to where they were supposed to be for the most part. I will be eternally grateful for that.
Unfortunately, real damage was done in the way of pain.. Fortunately, I do see Dr Sith tomorrow.
But the brightest moment of this 72-hour hold was today at about 6 in the evening when I heard a voice. It was a woman’s voice. She had a Jamaican lilt to her voice. I placed her immediately as being *my* psychiatrist I walk towards her voice and she was in a room talking with a patient but she looked up at me and despite the mask and my weight loss she recognized me immediately and then saw a surprise on her face.
But she’s my doctor and I’ve been in her practice for almost 5 years. She is familiar with what’s going on with me and my history so I was super comfortable at that point. I took a deep breath and was able to relax.
A half an hour later, she and the nurse came down to my room and we discussed what caused me to come into the ER.. She wanted to know how I got to the ER.. We talked about how I was feeling and feeling out my.state of mind.. She asked me why I was so animate about leaving as soon as the hold was up.. She reacquainted herself with my home situation.. We discussed my weight loss – cuz it has been 2 years since she’s seen me & I’m definitely smaller. She asked me what I thought she could help with..
Apparently, she liked what she heard and she discharged me. WITH a meds change, which is really all I wanted.. That and to actually have an appointment set up with her which got done earlier as well. 🙂
Am I still pissed about how things went down?? Definitely. Am I happy with the final result? Absolutely!
I went to Lakeridge Health to get help on Friday. But for the most part I’ve been screwed.
It’s Sunday & other than a 15-20 minute chat with the doc in the ER, I’ve seen no physician. The on call shrink who prescribed my meds has completely screwed me over I missed THREE doses of my antidepressant – which given that I’m here for mental health is excruciatingly bad. Finally back on as of this morning I was given a muscle relaxer & a Tylenol three on Friday in the ex for my fibro and that’s it.. nothing since.. but she did prescribed a Parkinson’s med for muscle spasms – huh? So my pain is skyrocketing… & It’s not freaking muscle spasms. & Have not been given any arthrotec (antiinflammatory) that I also take.. You should see my ankle from hurting it almost 2 weeks ago.. it’s exploded cuz I’m not treating the swelling
I have finally gotten the last nurse on the last shift to finally reach out to the doc to get something prescribed & his replacement is actually being more diligent & she has followed up twice now..
Then add to that my sleep.. while long, there was very little deep or REM sleep, so not much healing sleep here either
But God. This is the worst experience. Worse than being sent back home with my ex after a major OD (my ex was why I’d OD’d).
I dont know if I’m going to be able to get my shopping done for Christmas, let alone my baking.
This is supposed to be helping me It’s not. It’s making me worse
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.
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
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.
Fibromyalgia 
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