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.
My Endometriosis diagnosis journey is probably a little different than most. Partly because my symptoms are/were atypical, and partly because my Gyn didn’t believe me.
When my menstrual cycle started in Junior High, I was like every other girl. It started sporadically with varying frequency, duration and heaviness (for lack of a better word). But it stayed that way for months. My friends settled into the appropriate 28 day cycle with 3-5 of moderate bleeding. Then there’s the cramping factor. Some of them got mild to moderate cramps, but most didn’t get much at all while I would doubt over in pain. A friend of mine specifically remembers instances of that, but I only remember crawling up in a ball after I got to the nurse’s office.
By the time I was 15 & had been dealing with it for 2+ years, my GP finally agreed to put me on the birth control pill to help regulate my menstrual cycle and to ease the heaviness and the cramping. And it did, to a point.. My cycle became regular yet was still heavier & longer than my friends. But it was something I could live with.
And I did live with it, occasionally trying other birth control pills over the years. I lived with it for the remainder of high school, another three years, then all through college, another 3½ years.. Even when I had seemingly unrelated issues, I lived with it.
By the time I graduated, moved out & got my first job, I was having ongoing & consistent issues, but not necessarily tied to my cycle anymore.
Because of my earlier issues with my cycle & that it initially eased with BCP, he referred me to a Gynaecologist
So, he sent me to see a Gyn and she does a bunch of blood work, physical exam & even did a pap smear. All came back negative except for my Iron levels were low. Give the amount of menstrual bleeding, it wasn’t surprising..
Because my symptoms were atypical, not directly connected to my menstrual cycle and I was having issues with evacuation, she figured it wasn’t endometriosis and recommended that I see a gastroenterologist.
So off to the gastroenterologist I go.. I got the lovely experience of a colonoscopy resulting in a basic diagnosis of Irritable Bowel Syndrome. From there we began moderating food and supplements, tracking triggers and even after we found out the culprits I was still having severe abdominal pain that was no longer connected to in moderated bowel issues..
Back to the Gynaecologist I go. She was still convinced I did not have Endo. She finally agreed to a lap basically to shut me up. Guess what she found!
Unfortunately, she did not have the long enough tools to reach everything to remove it all.. So, that meant I had a full laparotomy to remove the rest 6 months later.
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’s 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 rate 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
What else can happen? In addition to those fun issues already discussed there can be issued with infertility.. With tissues not being where they are supposed to be, the women’s reproductive system is turned into a war zone. And it can really f*”kin hurt to engage in sexual activity. 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.
I first started having Endometriosis symptoms in my early teens. I started having CFSME symptoms in my mid-teen. My Fibromyalgia was triggered by a bout of of mononucleosis at age 19 which got slowly got worse…
Endometriosis was diagnosed when I was 26, Fibromyalgia at age 33, and CFSME at age 37. You’d think all these large diagnoses would qualify me easily for ODSP.
Nope.
My initial submission for ODSP, Ontario provincial disability benefits included documentation for endometriosis, fibromyalgia, edible syndrome, TMJ, asthma, IBS.. All of these diagnoses…No love..
From there I hired a lawyer you turned out to be a real dick and didn’t do squat. To keep my application current, I would request reconsideration based on regular bloodwork until I was able to get the needed documents.
When I requested a change of attorney I had to go into the tribunal, on the day of a huge snowstorm, with a broken foot.. The person who denied me didn’t even bother to show so the tribunal granted me the new legal representation – Durham Legal Clinic.
By this time, I’d seen Dr Alison Bested at the Environmental Health Clinic & had just become one of her patients in her private practice. I had another diagnosis of CFSME by her staff..
The legal clinic requested additional information from Dr Bested. They sent her a very specific document. This document basically outlined what I can and what I cannot do.
It covered the four broad areas of physical limitation. Mobility issues are those such as how far I can walk, do I need assistance devices for movement, how fast I can move – slow shuffle to jogging to an (ROTFL) out & out run. Upper body tasks include how much weight I can carry, how well I can push or pull heavy objects. Stair climbing functions are how many steps I can take, how fast I can climb. Activities of daily living include my abilities to eat, bathe, dress, sleep, administer my medications, preparing food & personal hygiene. She described me on my worst day.
My worst day, my pain is high. I can not walk more than to the bathroom – sometimes not even that far. This can cause issues with elimination. I am, at that point, unable to take any stairs, or carry anything heavier than a small plastic glass of water to take medication. I can not prepare my own food, let alone eat. Showering, brushing hair, cleaning my teeth would be beyond me at my worst..
Issues with Mobility, Stair climbing, , Upper-body tests & Activities of Daily Living like eating, showering and sleeping.
If you then you add my mental health health into the mix, especially as there were suicide attempts by this time, I was finally approved.
This same documentation, several months later, was used to successfully get approved by CPP-D, the disability program for Canadians.
It took several years for this process to complete.
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 currently in Ontario, where I live, there is a three tier plan, which itself is made up of stages.
Phase 1 is for High-risk populations including
Congregate living for seniors
Health care workers
Adults in First Nations, Métis and Inuit populations
Adult chronic home care recipients
Adults ages 80 and older
Adults with the highest-risk health conditions:
From this group, my Brother-in-law, my 2 nieces & my Dad were all quickly eligible for the first phase.
Phase II is described as Mass deliveries of vaccines. This is our current phasewhere we currently stand in the process. This phase includes:
Adults aged 60 to 79, in 5-year increments
High-risk congregate settings (such as shelters, community living)
Individuals with high-risk chronic conditions and their caregivers
Those who cannot work from home
At-risk populations
So, with that description,you’d think I would be eligible in Phase 2 for either Endo, Fobro, CFS/ME, etc.. but no.. here are the lists of conditions that apply:
Highest-Risk Health Conditions, eligible at phase I:
Organ transplant recipients
Hematopoietic stem cell transplant recipients
Neurological diseases in which respiratory function may be compromised (e.g., motor neuron disease, myasthenia gravis, multiple sclerosis)
Haematological malignancy diagnosed <1 year
Kidney disease eGFR< 30
Of these conditions, I have none. .
High-Risk Health Conditions currently eligible
Obesity (BMI > 40)
Other treatments causing immunosuppression (e.g., chemotherapy, immunity- weakening medications)
Intellectual or developmental disabilities (e.g., Down Syndrome)
Of these conditions, I have none. It’s interesting that someone who is so far they are morbidly obese has priority over someone with a heart condition..
I no longer has a BMI over 40.. At my worst, my BMI was over 50 ( I just looked that up & I’m like “Damn, Girl!”) My BMI is now approximately 33.. so, I’m not eligible for that either.
At-Risk Health Conditions:
Immune deficiencies/autoimmune disorders
Stroke/cerebrovascular disease
Dementia
Diabetes
Liver disease
All other cancers
Respiratory diseases
Spleen problems (e.g., asplenia)
Heart disease
Hypertension with end organ damage
Diagnosis of mental disorder
Substance use disorders
Sickle Cell Disease
Thalassemia
Pregnancy
Immunocompromising health conditions
Other disabilities requiring direct support care in the community
Again no Fibro, No Endo, No CFS/ME.. Whil those last 2 are considered to possibly be autoimmune, they are not classified as such. So instead I qualify due to:
Respiratory diseases – I have asthma. It is currently controlled & I would only need th ventolin for strenuous activity
Diagnosis of mental disorder – I have chronic depression, have since I was 16
Substance use disorders – I have an addiction to fentanyl – controlled & my last use was about 3 years ago.
I’m not sure what the “other disabilities ‘ entails.. But I doubt it covers the other conditions, but it’s so vague.
So, cuz I am depressed, cuz I used to need a puffer & cuz I like fentanyl a little too much, I am eligible for phase not cuz of the Endo, Fibro, CFS/ME. Apparently people with these condition are otherwise only eligible in stage 3 with the rest of Canada. That is unless their family doctor gets vaccines.
I have a huge list of approximately 60 or more international women of note who other has endometriosis or strongly suspected of having endometriosis. I’m just going to.list off a few that I can remember off the top of my head.
Jillian Micheals – Fitness trainer, known for TV show “The Biggest Loser”
Sinead O’Connor – Irish singer, known for her rendition of “Nothing Compares to You”
Hillary Clinton – former First Lady and 2016 Presidential Candidate
Marilyn Monroe – Actress
Julianne Hough – Dancer, know for “Dancing with the Stars”
Susan Sarandon – Actress
Whoopi Goldberg – Comedian/Actress/Daytime tv host
Cyndi Lauper – Singer
Emma Bunton – British Singer, known more commonly as Baby Spice
Amy Schumer – Comedian/Actress
Daisy Ridley – Actress, known for Star Wars
Chaz Bono – Son of Sonny Bono & Cher. (Transgender)’⁰
Over the years I have been on many medications & have tried various options for treatment. This is a list of treatments, both before & after diagnosis:
Summer 1988 – Menstruation cycle becoming more uncomfortable and occasionally painful. Treatment? Nothing.. I just figured they were just bad cramps.
Abdominal pain considered just ‘bad cramps’
March 1990 – prescribed Ortho 7-7-7 by my GP at my request for the purpose of lightening & regulating my cycles. This medications did helpat the time.
Winter 1994 – Increase of re-occurring and irregular abdominal pain, beginning in spurts. Pain usually, but not always, eased by soft bowel movement. Minimal impact on quality of life
August 1996 – Increase of re-occurring and irregular abdominal pain, still in spurts. Pain less frequently eased by soft bowel movement. Pain/discomfort had some impact on general quality of life.
Autumn 1997 – By this time, due to frequency in bouts of pain, was able to begin distinguishing between different types of pain as well as circumstance surrounding the pain. The abdominal pain and discomfort was beginning to have noticeable impact on general quality of life.
Spring 1998 – Referred to gynecologist who only adjusted my oral contraceptive to Triphaisal. This was changed back in the Autumn due to side effects ( no, I don’t remember or have record of what they were)
November 1998 – Referred to gastroenterologist by recommendation of gynecologist. Within a month I had a colonoscopy and a diagnosis of irritable bowel syndrome. Prescribed Dicetel which alleviated some symptoms. Referred back to gynecologist in March 1999.
Laparoscopic surgery
The next three months were spent pushing my gynaecologist to perform an exploratory laparotomy to confirm, or deny the presence of Endometriosis within the abdominal area.
June 1999 – Diagnostic Laparoscopy resulted in diagnosis and initial surgical treatment, excisement of Endometriosis. She was unable to excise all of the endometrial tissue as she did not have sufficiently long tools to get to all the areas.
August 1999 -January 2020– Quick return of abdominal pain. Prescribed Lupron hormonal treatment who was an ineffective treatment.
Depo Lupron
January 2020 – Full Laparotomy resulted in excision of remaining & new Endometriosis growth and a left ovarian cystectomy. Back on an oral contraceptive, Ortho 7-7-7.
March 2000 – Due to scar adhesion, approximately 12s layer of muscle fat & fascia scarred together. It took one very long and very very painful hour for my osteopath to loosen the abdominal scaring from my surgery. But OMG, the relief when she was done was phenomenal.
July 2000 – began to experience abdominal pain during and immediately before menstrual cycle., A more typical reaction of Endometriosis
Summer/Fall 2000 – Attempted to try accupuncture & Chinese herbal medicine for Endometriosis. The needles, I have found, don’t help me & usually also give me a migraine.. The herbal had zero impact.
November 2000 – began vitamin therapy to help combat Endometriosis & to improve overall health. It helped as a month later the abdominal pain during and immediately before menstrual cycle decreased.
October 2001 – Ceased oral contraceptive to participate in Endometriosis study .
January- July 2002 Participatef in study for Depot Provera. Received monthly shots of Depot Medroxyprogesterone Acetate Subcutaneous Injections. No change in symptoms while on the medication. Returned to Orthon 7-7-7 upon completion of study.
Depo- Provera
August-December 2003 – Increase again is abdominal pain level throughout monthly cycle, missing increasing amounts of work. The ended December 25 when I went on medical leave.
February, 2004 – Laparoscopic surgery, cautery of Endometriosis & lysis of pelvis adhesions. Bowel declared ‘immobile’ likely due to IBS.
March 3, 2004 – Start Othro Evra Contraceptive Patch continuous.
April 4, 2004 – Start Othro Novum 1/35 oral contraceptive continuous as patch resulted in breakthrough bleeding..
June 20, 2004 – Start Minovral oral contraceptive continuous as Ortho Novum resulted in breakthrough bleeding
January 2005 – Change Minovral to 3 month cycle due to break through bleed
March 2005 – 3 weeks of severe abdominal pain – Thought to be endo related, as corresponded with menstrual bleed. Took Percocet.
Severe Abdominal Pain
June 2005 – Severe abdominal pain again – Thought to be endo related, as corresponded with menstrual bleed. Took Percocet. Started Yasmin oral contraceptive continuous as Minovral had negative side effects. Was told if breakthrough bleeding occured, let cycle come. Unfortunately, I had three visits to ER for abdominal pain, CT scan showed enlarged gallbladder & possibly an ovarian cyst again on right side.
August 2005 – Abdominal, gynaecological ultrasound. Negative result.
October 2005 – Abdominal, gynaecological ultrasound. Negative result.
I don’t recall what I was switch to next, but it was a continuous oral bcp. Have been on a few other continuous birth control pills since then. Been fairly well.controled since then with occasional spots of pain. Changes were due to side effects and allergies.
Mirena IUD
Currently, I am still pre-peri-menopausal & have an IUD. I was also placed on Arthroyec, an anti-inflammatory, in the late 1990’s prior to any surgery but am still on.. The only problem I currently have is the natural bleed I get due to placement of tiny veins/arteries just inside the vagina. My current gynaecologist cauterizes them once or twice a year.
Fibromyalgia 
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