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..
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.
This is kinda like the get to know style of bingo, but it’s just for you. Check off what applies to you.
I originally just posted this on my regular social media, but choose to write about here.. The reason I do is the reaction of a friend of mine, Susan.
Late last year she was diagnosed with Rheumatoid Arthritis. Now, she has been struggling with acceptance that her life he’s been permanently altered through no fault of her own. Recently she say the post on my social media of my bingo card (see below) & noticed that she checked the few spaces I had empty. She then got curious & looked at the rest of the card noticing that she actually checked a majority of the boxes aswell.
This was her “Ah-ha” type moment. And realized “I have a chronic illness.” I think this realization, and acceptance of the hard truth has actually be a relief for her. She’s realized that there are limits and she has to learn where her limits are. But she’s no longer stuck and is able to move forward.
While I’m not happy that my post gobsmacked her in the face with the truth, I am glad she’s got the acceptance and is moving forward.
See where my 3 bingo lines are. How full isUis your card? I know someone who actually checks each box. 😦
Fibromyalgia 
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