Archive for the ‘Fibromyalgia’ Category

Women’s Pain

February 14, 2023
Undiagnosed! Understated! Dismissed!

Why Is Women’s Pain So Often Dismissed?

Health care providers can be quick to conclude that women’s pain isn’t so bad or is “all in their head”—an attitude that can lead to prolonged suffering and can put women’s health at serious risk.


Michelle was 11 years old when the pain began. That’s when she first got her period, with cramps so excruciating they made her vomit. “We went to see my family doctor at the time and she dismissed it, saying, ‘There’s nothing wrong with you. Everybody gets cramps. Just take Advil.’” But the pain got worse when Luciani was a teen. The same doctor put her on birth control, which dulled the intensity slightly. Nevertheless, she came to expect that once a month, she’d feel a twisting in her pelvis and experience stabbing cramps that jolted through her like electrical shocks. Her doctor continued to tell her that cramps were normal.

After high school, Michelle moved from Toronto to Vancouver to study media arts. One day, she experienced a new kind of pain in her abdomen. “It went from a five to a 20 very fast,” she recalls. She hurried to the hospital, where staff found fluid in her abdomen, caused by a ruptured ovarian cyst. Once again, Michelle was told, “There’s nothing to worry about—it’s normal.” The physician gave her morphine and sent her home. But throughout the course of the year, more cysts ruptured, and each time, Michelle faced the same message in the emergency room: “You just have to get through it.”

When she was 25, Michelle found a gynecologist who told her the symptoms sounded like endometriosis, which occurs when the uterine lining grows in other areas of the pelvis, where it doesn’t belong. He booked her in for exploratory surgery to look for signs of the painful chronic condition, but in the end, he didn’t find anything wrong.

Michelle was filled with hopelessness. She’d been sure she had endometriosis, but a doctor was telling her that wasn’t true. In too much agony to work, she moved back to Toronto, where her family lived. She searched for a new doctor who could help her, but after reading the report from her surgery, each health practitioner said the same thing: since the procedure hadn’t led to a diagnosis, nothing was wrong with her. She was told the pain was in her head and was offered antidepressants but never a solution for the pain. “I just felt crazy at that point,” she recalls.

Finally, at age 26, after having consulted with five doctors since her initial surgery, Michelle found one in Atlanta, Georgia who was willing to repeat the procedure. She paid nearly CAD $40,000, and this time, the results were conclusive: she had endometriosis. Three years later, she would also be diagnosed with polycystic ovary syndrome, a condition that affects women’s hormone levels and can result in cysts in the ovaries.

She’s Not The Only

Michelle isn’t the only woman to spend years having her pain dismissed, or to be forced to advocate for herself with doctor after doctor simply to secure a diagnosis. A 2006 study published in the British Journal of Obstetrics & Gynaecology interviewed women with chronic pelvic pain and concluded that “most felt that their pain and suffering had not been legitimized by at least one doctor that they had seen.”

Over the past few decades, researchers have found that women’s pain is often taken less seriously than men’s and, as a result, it frequently goes untreated or undertreated in Western medicine. There is no lab test to evalu­ate pain, so it’s up to a patient to describe their experience—and up to their doctor to believe them. But, as Luciani learned, health care providers can be quick to conclude that a woman’s pain isn’t so bad or is “all in her head”—an attitude that can lead to prolonged suffering and can put women’s health at serious risk.

Based from :

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Personally, I’ve has to deal with this. Like Michelle, I started having menstrual cramps as soon as I started my period. It was long& heavy. GP put me on birth control pills at the time. My cycle regulated, was a little less heavy, but cramps got really bad some days, I’d be curled up in a ballin the nurse’s office at school or if they kicked in at college, curled up in the women’s lounge couch. Eventually my cramps became almost constant. Referred to Gyn who referred me to GI Diagnosis, IBS. IBS controlled, referred back to Gyn. He told me “I don’t think it is Endometriosis, but if you insist, I will do the surgery.” I insisted & guess who was right! Because she didn’t think she’d need all the tools, she was missing some from the first surgery. That resulted in a full laparotomy 6 months later with a full inverse T incision and 12 weeks unable to work, recovering. 12 years from onset to initial diagnosis.

I dont even want to get into my fibro diagnosis . We believe that diagnosis took 13 years. With another 15 to get it ‘controlled

Based on an article in reader’s digest. The original can be found Here

Five Senses

January 31, 2023


Mindfulness is described as a mental state achieved by focusing on the present moment. The idea is to calmly be aware of & accept one’s feelings, thoughts, and/or bodily sensations. This therapeutic technique can help in so many ways including with pain, sleep, depression, anxiety, self-esteem, self-control, concentration & mental clarity, emotional intelligence and the ability to relate to others & one’s self with kindness, acceptance and compassion.

Use this exercise to quickly ground yourself in the present when you only have a moment. The goal is to notice something that you are currently experiencing through each of your senses. You start to focus on yourself and everything around you where & when you currently are.

This mindfulness exercise is good for calming one’s self down from anxiety or exertion.

What are 5 things you can see?

Look around you and notice 5 things you hadn’t noticed before. Maybe a pattern on a wall, light reflecting from a surface, or a knick-knack in the corner of a room.

What are 4 things you can feel?

Maybe you can feel the pressure of your feet on the floor, your shirt resting on your shoulders, or the temperature on your skin. Pick up an object and notice its texture.

What are 3 things you can hear?

Notice all the background sounds you had been filtering out, such as an air-conditioning, birds chirping, or cars on a distant street.

What are 2 things you can smell?

Maybe you can smell flowers, coffee, or freshly cut grass. It doesn’t have to be a nice smell either: maybe there’s an overflowing trash can or sewer.

What is 1 thing you can taste?

Pop a piece of gum in your mouth, sip a drink, eat a snack if you have one, or simply notice how your mouth tastes. “Taste” the air to see how it feels on your tongue.

The numbers for each sense are only a guideline. Feel free to do more or less of each. Also, try this exercise while doing an activity like washing dishes, listening to music, or going for a walk.

© 2015 Therapist Aid LLC

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How I’m a Functional Cub Scout Leader, part 2

January 24, 2023

Since my last post the packs have returned back to their former alignment. We are completely seperated. My group is meeting at our church with our program, they are meeting at their church running their program.

Before the split as primary contact scouter, I was getting less support from some of the leadership in the other group. I was even receiving blacklash without assistance to change. Add that we had the potential, and did at some meetings, to have almost 50 youth That’s alot of kids.

To cope, I finally told my group commissioner that we either split or unfortunately leave Cubs which I did not want to do. It has the desired effect and our commissioner told their commissioner & their contact scouter. The rest of their leadership was told 2 meetings prior to the youth. The youth were told at the second last meeting of 2022 that the group was splitting as of January.

So, the 13th Leadership had a planning meeting – whoo hoo! – I donn’t have to decide everything anymore. While alot still sits on my shoulders, this smaller team is working together and actually discusses issues. And because there are no drawn out conversations or prolonged arguments, our group chat is now clear, concise and effective. And with 20 Cubs the youth is alot more manageable and I’m going to be able to connect with parents alot more effectively.

What I Do To Cope.

Well, with all the recent changes, there is significantly less stress. Plus my leadership team just does what needs to be done. I’ve had a load come of my shoulders as a result.

But what do I actually ‘do’?

I rest.. before and after meetings.. I try not to have anything going on Tuesday afternoons if I can avoid it.. and nothing Wednesday mornings to early afternoon aswell

After most cub meetings, I am able to go over to the gym and take advantage of the hot tub. This helps relax the muscles that have tensed up. I find if I don’t get that hot tub, I do not feel all to great the next day. My pain goes up, the fatigue increases, my sleep is impaired and some of my other issues crop up.

Also, I expel alot of energy in a good way during our closing. The fel expression my enthusiasm, the youth’s enthusiasm for our jungle closing is cathartic. “Wood and Water, Wind and Tree! Wisdom, Strength & Courtesy! Jungle Gever Go with Thee! Good Night! Good Hunting!” And because of a previous leaders addition the youth add of their own volition “& Go Straight Home!”

What I Can’t Do.

Generally I can not participate in most of the games. Those just take too much energy & depending on the game, it may be physically changing or flat out wipe me out or hurt me..

We have a camp coming up. We have limited bunks available, but I require my own bunk & preferably away from the youth, so I can sleep. I’ll be taking ear plugs, just like I did while tenting last spring. I need my sleep to function & to heal. But I also have 3 other leaders and a parent volunteer I can depend upon for assistance. Chill has already agreed for breakfast KP duties which is awesome cuz I don’t do mornings well.

Anything that requires me to do anything on the floor is also very challenging as the process of getting up & getting down are difficult.

But its worth it!

New Relationship

January 17, 2023

My ex got me on to the social media platform known as Kik. This is a text chat medium. In addition to my Ex’s groups I am in 2 others In all 5 groups I am in, I am an Administrator.

It was in October, that he noticed me. We chatted in the group then into private messaging where he told me what caught his attention with how I would administrate the group such as encouraging participation and introducing topics.

In private message we found that we actually had quite a bit of common and that we were looking for similar things from life.

On October 30th we transferred over to direct text messaging. As we kept speaking with each other we found that we have a similar moral base with similar ethics. We continue to find things an interest that we had in common. We noticed a compatibility and an attraction as we had exchange photos. Our personalities have, thus far, meshed well with a similar sence if humour.

While we have differences it has created interesting conversation as opposed to conflict. Neither of us is adverse to compromise or there are ways to adapt. And, we’ve already had one major disagreement, but we talked out out. Due to the nature of the topic and the sensitivity, we both decided it was too early in the relationship to be addressed. While it will need to be addressed, it should be revisited when things become more settled between us.

The biggest hurdle we see between us, at this time, is the physical distance as he lives 2+ hours away on the other side of the city.

Late December, we met for coffee. After leaving Tim Horton’s after 1½hr, we chatted and connected in his truck for another 2 hours. Man can he kiss!

The next day he was already asking when we could see each other & we met for lunch less than a week later just before New Years Due to holidays & personal commitments over the Christmas season, we were unable to see each other until the new year.

The weekend before last we were supposed to get together to go for a hike together. Unfortunately, due to unexpected work commitments then health issues, we had to reschedule & reschedule.

We ended up rescheduling this Thursday past & we had a good time.. Trail was not the “easy” level it indicated, but we still managed ok despite the steep hills, fallen trees and inconsistent spots of mud We found that while we can talk we are also comfortable with our silence.

We already have a commitment for the day for the Saturday this coming weekend. Swimming & snowshoeing are currently on the books, as well as dinner. I expect we’ll have a ton of fun.

While I’m not home the following two weekends after due to personal commitments, I am hoping to see him in between, during the week. Because of the distance between us it may not be possible but I hope so!

I get butterflies when we talk, when we text & most importantly when we have spent time together. Wish us luck cuz we both want a nltr, hopefully with each other. 🙂

One Upmanship

November 22, 2022

I read an article recently entitled Why Is My Friend with Fibromyalgia Trying to One-Up Me? and I could totally relate.

I have several friends who are fellow fibromites, women with fibromyalgia, each to varying degrees and varying function levels. I can speak about these issues with them, comparing yes, but also supporting each other. But I did have one in particular that would always work her pain in the conversation and make it sound worse than anyone else’s could possibly be.

This lady who I am no longer friends with works full time because “she can’t afford not to.” While when her & hubby constantly go out for dinner, go to concerts and socialize, and spend money lavishly, it’s no wonder she can’t afford it. But I’m curious as to how bad her pain really is if she works full-time and does all this other stuff. (Yes, I know that sounds a little judgey, but she makes me angry with this behaviour of hers)

She would berate me for not working, for taking disability. I am on both provincial and federal disability supports. Admittedly, I have in recent years, worked the federal, provincial and municipal elections. This is a single day, paid position. Yes, it is a long day. She thinks because I can do those one-offs, I should be able to work regularly. After those single days of work, I’m toast for up to three, four days later, even have been almost bedridden the first day after. How would I be able to work a regular job if I’m in too much pain & too exhausted after a day of work to even do the very basic daily activities of living?

Even tho we were good friends, she never saw me when I was feeling poor, and didn’t even talk much when I was, at one point, bedridden. So, while she is comparing, she’s not accurately comparing what my true issues are and even then, most of them are different from hers.

She doesn’t really understand that it is not a competition..

I also addressed this topic in a previous post, My fibro is not her fibro.

The Process of Doing Laundry

November 18, 2022

There is something that healthy people don’t realize about those dealing with chronic pain. That is the unrelenting exhaustion that occurs when dealing with and fighting chronic pain. This exhaustion severely exacerbates energy levels so sometimes we can’t do everything in one shot. Laundry is an excellent example of this.

When doing laundry, most people will throw stuff in the wash. When the cycle is done they will throw the clothes from the wash to the dryer and throw in another wash another load to wash. When the dryer is done it will take out the clothes into a laundry basket, fold them, then put them away. Then they repeat as needed.

There’s no way I could do all that. Not with the other things I need to get done in a day. So for me, laundry is a multi-step process.

1. Organizing clothing.

While this is frequently merged with the next step, it isn’t always. If I have a full hamper of clothing, I have to take it all out and separate it into different loads including a gentle load, potentially a white load bleach and then splitting up the colors into two balanced loads. Just the weight of picking up putting down and moving around clothes especially if there’s something heavy like towels, that can get pretty tired and pretty fast.

2. Washing.

From here, I have to get the clothing from the laundry hamper in my bedroom to the laundry room. Fortunately for me my laundry is on the same floor as my bed room. But carrying that much weight and then starting the cycle and making sure all the clothes are in and balanced. Well healthy people don’t think twice about this again it gets really tiring really fast.

3. Drying clothes.

I have a stacked washer dryer so picking up heavy wet clothing from the washing machine and pulling it up above head level into the dryer takes quite a bit of effort. Again most people don’t think twice about something like this. After getting everything in the dryer, making sure all the laundry balls (because I don’t use dryer sheets) are evenly distributed through the load because half the time I forget to do that ahead of time. So this means moving around all these heavy wet clothes, again. Now sometimes it’s a gentle load and that requires me to take things out move them across to the other side of the laundry area and it’s a pretty big space considering, and hang each item up carefully on the drying rack. Fortunately, gentle loads are rarely a big load and lighter in the summer than in the winter.

4. Emptying the dryer.

I can put a laundry basket on top of the washing machine and carefully drag clothing out of the dryer into the laundry basket. This is not the difficult part. The difficult part is bringing it out to the living room which is where I tend to fold my clothes. While they are no longer wet, they still tend to be heavy and I have to carry that from one side of the apartment to the other. Most people don’t think that’s a long distance but when you’re carrying that much weight and yes for someone on chronic pain that’s a lot of weight, that far it can be painful and exhausting. Then if I also have to grab the dry gentle clothing it’s on the drying rack on my way by that makes the basket even heavier.

5. Folding clothes.

I tend to procrastinate, I will admit that so this is partly a problem of my own making. As a result by the time I get around to folding my clothes, I usually have a couple of full baskets of clean laundry. Fortunately I have very little that actually wrinkles. I tend to take my time and organize the clothing as I’m folding it, while I’m watching TV. Watching TV while I’m folding is it good distraction so I don’t notice the pain or the fatigue as much. I will agree that lifting one item at a time and folding it and putting it down it’s not that big of a deal but doing that process over and over and over again for an hour or two, takes its toll. Yes it takes me that long to fold my laundry.

6. Putting Away.

As I fold, I tend to organize everything. T-shirts that go to the dresser together, pants that get hung, go together, hoodies go together, socks in one pile, undergarments in another, and pj’s all together. It makes it easier, but those baskets must also be brought back to the bedroom and the weight can be excessively heavy as I move basket after basket. But again I procrastinate until I’m actually looking in the clothing for specific items.

The issue with putting things away isn’t so much the stuff that goes into drawers, but the stuff that gets hung. I have a walk in closet & most of my clothing hangs from a rod just above my own height. Jean are the worst, not only do I have to get them on a pant hanger correctly, they are also heavier than most of my other clothing & the weight hangs long making it more difficult to maneuver. Especially if I have several pairs of pants, I may not be able to empty all the baskets cuz lifting clothing above my head stresses my arms & back exacerbating the exhaustion of the activity.


So, not only do I have to do this in steps, resting between, this process can take a few days to work through because the pain and exhaustion severely limits the amount of energy one has.

Being Sick with Fibro

October 25, 2022

So i caught a bug this weekend. Stuffy nose, sore throat, head ache, body aches . Never did take my temperature.. & I noticed something .

The Fibro pain isn’t typically everywhere at once.. it’s usually once place or another, not everywhere.. But you add the body aches & every is now hurting.. yuck.

Cognitive Issues with this Project

September 13, 2022

I have been sewing to some extent, all my life starting with Brownie badges & Barbie clothes.

In Jr high I made a denim pencil case, some board shorts, & a couple of pillows. Growing up I helped Mom with her sewing projects

Over the years I’ve branched out on my own projects. I made myself clothing as some of the plus clothing in the stores just didn’t suit me or were poor quality. I’ve made pants, overalls, capris, dresses, camp ponchos, Halloween costumes, etc.. I even helped my mom make pajamas for my nieces. Then there were covid masks – lots of COVID tri-layered home made covid masks.

I’ve made alterations of different types including simple hems, preplacing elastic waist bands, reinforcing hems, adjusting the fit of dresses, mending of many a dog toy, not to mention tons of buttons & camp & uniform patched &:badges.

So, needless to say, I have had a decent grasp of the concepts with sewing.

Recently, my sister asked me to help her sew slip covers for her outdoor furniture. I agreed before I found out there were 28 cushions to cover.

Now, I know I’ve had cognitive impairments that have impacted my ability to function. Family members have not noticed to what extent this has impacted me, until this project.

Both my Mom and my sister are stunned with the amount of problems I’ve been having. We all agree I am not stupid. I’m quite intelligent but there are so many other ways I’m having issues.

Poor Communication : I think I’ve told someone something that I thought I had. I also have trouble explaining concepts, ideas, solutions in a way that others can understand I will bet I’ve not explained the problems accurately or succinctly enough below to make most people understand issues I encountered. Then solutions to problems (see below) that my sister recommended were the same as mine but just from a different angle but somehow I can not able to explain it. It happened so many times & I was so frustrated with myself that I just let her do what she wanted, sometimes even if I knew it was wrong and I couldn’t explain why.

Ability to Remember / Relearn : I should know basic sewing skills like how to thread a bobbin, which way to sew a hem, how & where to place a seam, knowing what stitches do certain functions, how hard to pull the material through, how quickly to run the machine. These are all basic skills I had and in some cases have taken up to a week to remember or relearn.

Poor Problem Solving Skills : With sewing from our own pattern, I’ve encountered multiple problems, many due to missing the skills above. I had taken me days to figure out solutions to some of the problems for example, seams. I keep reversing my seems and putting the seem on the incorrect side, putting the rough on the outside instead in the inside resulting in many seams being removed and redone. Another is sewing only the fabric required & not accidentally overlapping other parts of the material – I still did this a week after starting. My sister even said my problem solving skills were so bad that I probably would not even be able to work at a job as basic as McDonald’s.

Inability to make corrections: This goes with the problem solving skills. I had a piece of material with one side of velcro on it. I sewed the piece on correctly. However, I had seen it on incorrectly. I had though I’d put the velcro on the wrong side, so I ripped it off. This made the initial blunder even worse, because after I’d switch the velcro to the top, I was then able to see that I had sewing it correctly to begin with, but had reversed the seam. So I had to remove the piece and the velcro again. I had to replace the velcro to the original correct side and resew the side piece coorectly. I was so frustrated and almost in tears because I never would have made this massive double blunder when I was younger.

Spacial Impairment : First, I have a good background in mathematics including social orientation and had even earned a small scholarship as a result, but my sister never had that as a strength. So, as I mentioned above, we were sewing from our own pattern, nothing pre established. It was based on a YouTube video my sister watched. I’ve had alot of problems understanding the way she has wanted me to sew certain pieces on & how they should work together. The only way we were able to visualize how things should be done was by actually putting the fabric on the cushions. Neither of us could get the orientation in our heads. For my sister, that was fine, but for me, it had been a strength and I felt so useless.

It just upsets me, writing this post, to actually write down how many problems I have, how many intellectual skills I have lost. I’m almost in tears. Frustration? Grief? I don’t know.

So because of how obvious it has become, my mom & sister have both suggested I talk to my doctor about these issues Because I can not explain the issues well, my Mom is coming with me, and I’ve asked my sister to write up her opinion. She actually asked me if she wanted her to write it in a way that won’t hurt my feelings. I know it’s bad, so I told her to be blunt & straight up. I know she has great communication skills, so she will be able to express my problems in a way I can never do.

I asked Wendy to write something up for my doctor & accidentally got the date wrong so this is the quick blurb she wrote for my GP.

"So working memory… able to hold things in head to process them, general memory.. asking questions that u had asked a few minutes before, making same sewing mistake many times e.g side sections.. still sew up past stop line after 8 corners, doesn't occur to you figure problem solve this e.g double pin… you came up with solution but I brought up the idea to problem solve this."

I’m pretty sure the issues are due to fibro because I *have* had assessments done and even several MRIs because of it.

I have blood work which I have done and I’ve scheduled a cognitive and memory test for the 29th of August. I follow up Dr Uju I’m September 6th

Concerns About My Post Content

September 9, 2022

Firstly, if you don’t like it don’t read it.

Lately I’ve been getting criticized about the extent of, the detail of & excessive amount of information that I have been sharing on my blog in recent weeks..

Well. It is my blog and I can choose what I like true right, how I write it, the topics I choose and the fact that no I don’t burn my journal every 3 weeks like apparently I’m supposed to. This blog started in, I believe 2009. There are not a lot of people who actually read this so I’m not all that concerned. Pour a lot of the stuff specific names are not mentioned so nobody can complain that I am complaining or commenting but someone or something specific.

This blog is is mine. It is for me to share information including treatments, medications, self care, nutrition, exercise, etc. Also for me to share my feelings and emotions about myself. Others around me. My intimate and personal relationships.

Yes I’m sharing this, and I do know that this is going on to the internet and once it’s there there is no bringing it back. However no one really reads this and as per responses to request for feedback in other posts, no one really cares to share or to have issues with what I say..So I’m going to say whatever I bloody well please..

For courtesy sake I will, have & do give warning on sexual or intimate topics that certain people in my life may not wish to her. And just in general it may be considered an overshare which is why the warning is there. In bright red…

Enjoy this corner of my mind

Cognative Issues, Test Results

September 9, 2022


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


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


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