This one is for all the people like me battling pain. . .again, battling pain. . .still.
(Note: it’s taken me two months to write this post, probably because the pain waxes and wanes, just as my acceptance of it waxes and wanes.)
First There Was Fibromyalgia Pain
I’m almost used to the widespread achiness of a fibro flare; it comes when I haven’t been working out as regularly or when some bug is wrestling with my immune system. It’s nice to be at the point 30 years since diagnosis where fibromyalgiais a flare-and-fold kind of malady instead of a daily dose of misery. I never go a day without 50 mg of amitriptyline at dinner and I can’t go more than two weeks without some kind of cardio workout or else a flare, well, flares. When the pain comes I know the best thing I can do is hit the road and run or if that’s not possible, work at least a twenty-minute yoga tape.
The kind, young doctor who diagnosed me back in the 1980s told me over and over, “I don’t care how badly you hurt, you have to move or the pain will never go away.” That sage advice has kept me at least in the middle of the road if not on the sunny side of Pain Street.
And Then Came Celiac Disease
But fibro isn’t my only source of pain. Thank celiac disease for feeling like a rusty freight train is stuck in the upper intestines for two days spewing rancid, deadly soot before finally roaring through the colon, flattening anything and everything in its path. That happens less frequenthly now, thanks to my Nima sensor and to hyper dietary vigilance.
Back Up: It Really Started With the Womb
Two years ago all of my internal lady parts were removed with the hope and expectation of ending nearly three decades of abdominal pain. From the first cycle the month before I turned thirteen to the last cycle halfway through my 48th year, I endured pain every month and for the last several years even between months.
You can imagine how this sometimes made me less than thrilled to be a woman. Even the wardrobe perks couldn’t pull the feminine mystique past the “meh” threshold by the end.
I underwent my first surgery to remove endometrial adhesions when I was 24. I then took medication for six months to suppress my cycle. I felt so much better without a cycle, I decided to starve myself so I wouldn’t have to risk a return of endometriosis. It worked for nearly a decade.
I don’t recommend that strategy. Such starvation caused its own problems, starting with dizziness and progressing to perpetual crankiness, severe anemia, and even osteopenia. Abnormally low estrogen also jacked my risk for cancers and heart problems while abnormally low weight also threatened my heart. It also precluded procreation, which was preferrable at the time but a painful regret now that it’s too late.
I ended that insanity and returned to womanhood at the age of 33 when a promising relationship made me want to be fertile again. Alas, the pain quickly followed but the happily ever after mommy train did not, and I can blame no one but me for that, but that’s another story for another dozen posts.
Tangled: The Appendix
For four years, I could not go running at least two days before the onset of flow nor on the first day of flow because the pain was breathtaking. If I forgot or thought, “Surely, things must be better now,” I’d be nearly blinded by the pain after a half mile. I’d turn around and limp home, each step a new agony. Once home, I’d writhe on the floor, the pain in the lower right quadrant of my abdomen adding purple hues to my blurred vision. I’d pray for relief for at least fifteen or twenty minutes before the nauseating agony ended.
The surgery two years ago revealed a stunning cause for the pain: my appendix was tethered by endometrial adhesions to the abdominal wall. Those adhesions behaved as my uterine lining did, filling with blood and then shedding it every month; unfortunately, there was nowhere for the shed to go and so the tethers thickened.
The gynecologist who performed the surgery explained he had to keep the appendix intact because it looked healthy once freed from its endometrial prison. He removed adhesions from other organs, too, before yanking all the offending lady parts, which thankfully harbored no cancer, through the birth canal and out of my body.
I envisioned the birth of a new pain-free life, but alas, I underwent a second surgery 15 months later because the pain persisted. Once again, scar tissue had adhered the appendix to the abdominal wall. The same surgeon freed it yet again, and cut away adhesions on the intestines and the bladder. He inserted surgical film to help prevent the recurrence of adhesions but annoyingly left the appendix in place.
It didn’t work. The pain persists to the point of wiping out the perks of being a girl. I can’t wear normally sized clothes, at least not around my waist or abdomen. I have to wear stretchy pants or skirts at least 2 sizes too large. Dresses can’t have defined waistlines. Forget tights or pantyhose, unless I stretch the elastic waist nearly slack. Shoes have to be well-cushioned or else the heelstrike will jar my gut too much. Those supersoft skinny jeans or even jeggings? Forget it. After an hour my gut is in painful knots.
A white lidocaine patch covers the right side of my lower abdomen nearly every day. It helps numb the nerves so the pain doesn’t scream quite so loudly. I wish they came in colors that coordinated with my foundational lingerie. I’d pay extra for fancy patches, especially if there was a lace-like option.
I tried a variety of essential oils (not concurrent with the patch) diluted in fractionated coconut oil including frankincense, rosemary, fennel, and I forget what else. The only thing they did was make my liver hurt. I had high hopes for copaiba oil, given its anti inflammatory properties but after weeks of faithful use, I’m sad to say it hasn’t touched the gut pain. On the plus side, it works really well for my shoulder and elbow “itises.” Within moments of application, those pains disappear. I call the roller bottle my magic eraser.
I turned to a gastroenterologist for help. A colonoscopy before the second surgery found nothing of concern inside the large intestine. Whew! No blockage, no stricture, no polyps. An upper endoscopy this past summer found evidence of active celiac disease (I wrote about that here and here) but nothing else.
The gut doctor chalked my pain up to irritable bowel syndrome (IBS) and prescribed donnatal. I took the donnatal three times a day, every day for four months. It helped regulate the gut, which was a relief, but that pain on the lower right side never abated.
The pain changed in September, worsening in the lower right quadrant and blooming anew just beneath my rib cage on the right side. I tapered off the donnatal, hoping that would help. The pain worsened until the pain in the upper right quadrant scared me so much I called my husband and urged him to come home. He did and after calling the GI doctor’s office–they suggested I go to the ER–and the insurance company’s nurse hotline, we went to an urgent care place.
The urgent care doctor didn’t like how my belly felt when she palpated it. She urged us to go to the ER, concerned I might have appendicitis. We went to the ER and after an “inconclusive” CT scan, was admitted for three days of observation.
Long story short, the appendix appears abnormally close to the abdominal wall on CT but nothing else looks amiss. Of course, the doctor noted, scar tissue doesn’t appear during CT or MR imaging but he guessed it was the source of my pain. He and a surgeon advised against surgery at this time because surgery begets scar tissue and I risk iatrogenic relapse. The gut doc also said if I underwent an appendectomy at this point, I risk having scary complications. Drat.
Moving the Needle: Acupuncture
I want an easy fix and an easy fix doesn’t exist. I want someone to say the pain will abate with one more surgery but that’s not in the cards right now.
So I’ve been going to a doctor of Chinese medicine and acupuncture. During my first visit in late September, she palpated my abdomen and immediately said, “That’s too much scar tissue. I feel it!”
Yes! Yes! She could feel those hard bands, too. I wept tears of relief. Maybe this would work.
Dr. Li has spent the last four months working the needles to break up the scar tissue and it seems to be working, although much more slowly than I’d prefer. I go once a week, every week. It’s a painful process but I welcome the moments of pintucked pain with the belief that it eventually will relieve the long-term pain. I’m also glad to know there’s a reason my left shoulder seizes up when my gut acts up, something that baffled the physical therapist and gastroenterologist: it’s all on the liver meridian. I now can press certain acupressure points to help the shoulder release. It’s amazing.
I think I feel better. I’ve gone ten days without a lidocaine patch. I wasn’t pain-free those ten days but I felt the pain was manageable.
The Power of Positive Thinking
Sometimes I feel so much better I think, “We’ve done it!” And other times, the pain returns, mocking me for my optimism. Mock away, but I have to believe we’re making progress. I have to hold onto hope that I won’t have this pain the rest of my life. I have to believe that I may have pain today but that doesn’t guarantee I’ll have pain tomorrow or next week or next month or next year. I have to take it one day at a time or else I’ll fall into a deep sea of despair.
Today I can’t ask, “Why me?” because the answer is, “Why not me?” Millions of people live every day with chronic pain. If you’re reading this, chances are you live with pain, too.
I’ve lived for 30 years with fibromyalgia so I can live with this. The amitriptyline I take daily for the fibro doesn’t lessen the abdominal pain, or maybe it does and what I feel is far less than what I’d feel without it. That’s a blessing. The running I do 3-4 times a week for my fibro and asthma makes me feel better overall–love me some endorphins–so I’m more capable of ignoring the pain. Indeed, physical exercise is essential for managing my fibro and so it is with all other pain. What a blessing that something as wholesome as running helps so much! What a blessing my solution today is not an opioid or other toxic pharmaceutical. What a gift to be given pain so I appreciate so much more the little pleasures in life like the wildlife I see when I run.
Today I can do this. We’ll see about tomorrow when tomorrow comes.
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