Category Archives: My story

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Drug-free Help For Painful Periods

Skip to the bottom for the research round-up on help for painful periods.

As I’ve mentioned before, I was on the birth control pill continuously for a few years as a way to manage such severe dysmenorrhea that my body would go into shock (so explained the ER doc) and vasovagal collapse. It didn’t happen every month by any any means, but, when it did happen, it was much worse that a mere “faint” and my OBGYN said that she would be comfortable if I remained on the pill without a period for the next 20 years.

I will say, if you can tolerate the pill, it is pure bliss in terms of skin, mood, bloating etc. Often, you don’t know how well something is working until it goes away and, for me, this was the case with the pill in certain aspects. God, why is my belly so distended when I haven’t eaten anything? Ugh, why does my skin look like I’m a 14-year old? Why can’t I stop eating today? Don’t talk to me. Don’t even LOOK at me! AHH! I’M SO HOT AND BOTHERED! I’ve had three periods since coming off the pill and I am still taken aback by these symptoms, none of which I noticed when I was on the pill.

Having said that, I am still thrilled to be pill-free. My headaches eased up after Christmas and, although I can’t 100% attribute that to coming off the pill, it is encouraging. But, the most exciting thing is that I’ve had very little cramping. This last week, the pain in my lower back was excruciating and the the increase in ME/CFS symptoms was obvious, but the cramps themselves did not even warrant a painkiller. For someone who has spent years living in fear of that time of the month ~ who has planned work and social events around the first day and made sure I was prepared for an ER visit ~ this is MIRACULOUS. I’ll take all the PMS symptoms any day over the pain.

This post so far is probably only interesting to my Mother who has heard my complaints for years and was visiting once when the pain took over, the syncope hit and the ambulance took me away, but for all the ladies out there with painful periods, here’s what I want you to know: I absolutely believe that the pain is better because of the supplements I’m taking. Last year I had researched things that could help painful periods and my doctor had also sent me some research articles, but, of course, I never really believed they could make a difference, so I never did anything with that info. Now, I know they work, although I don’t know which supplements are contributing the most. SO, here is a round-up of the research I did (from different websites and my doctor). Try some of these ideas if you suffer every month ~ it could actually eliminate pain killers!

These are the things that I take/eat/drink every day that I believe reduced my cramps:

  • Fiber supplement
  • Borage Oil
  • Fish oil
  • Vitamin D
  • Vitamin B-complex
  • Magnesium
  • Vitamin E
  • Zinc

Diet:

  • Using healthy cooking oils, such as olive oil or coconut oil.
  • Eat antioxidants, including fruits (such as blueberries, cherries and bananas) and brightly-coloured vegetables.
  • Eat almonds and dark green leafy vegetables (such as spinach and kale).
  • Eliminate trans-fatty acids found in commercially baked goods, such as cookies, crackers, cakes, fried foods, processed foods and margarine.
  • Avoid refined foods, such as white breads, pastas and sugar.
  • Avoid caffeine(ish), alcohol and tobacco.
  • Use turmeric.
  • Drink tart cherry juice, ginger tea, 6 – 8 glasses of filtered water daily.

And here are all the other tips I gathered:

  • Take daily multi-vitamin
  • Calcium citrate, anywhere from 500mg-2,000mg daily, depending on the source.
  • Magnesium, 250mg-800mg daily, depending on the source (I take 400mg)
  • Vitamin B6, 50mg-200 mg depending on the source (the week before my period, I add 100mg on top of my B-complex)
  • Vitamin B1 (thiamine)
  • vitamin B3 (also called niacin; 500 mg twice daily)
  • fish oil supplement containing omega 3, 6, and 9 fatty acids and DHA, EPA, and GLA to inhibit the production of certain prostaglandins 1,000mg-6,000mg daily, depending on the source (I take 2,000mg + 1,000mg Borage oil)
  • Black current oil, borage oil, or evening primrose oil.
  • Vitamin E 400-500 IU daily
  • Zinc
  • Vitamin D
  • Avoid Xenoestrogens and Phytoestrogens. Xenoestrogens lotions, shampoos, and laundry detergent. Phytoestrogens are plant estrogen’s that can be found in some herbs.
  • Acupuncture
  • Engage in stress reduction activities such as yoga, massage and meditation.
  • Exercise at least 30 minutes daily, 5 days a week.
  • Chaste tree or chaste berry (Vitex agnus castus) standardized extract, 20 – 40 mg daily before breakfast.
  • Cramp bark (Viburnum opulus), taken as a tea. Boil 2 tsp. dried bark in 1 cup water then simmer for 15 minutes; drink 3 times per day.
  • Black cohosh (Actaea racemosa) standardized extract, 20 – 40 mg two times a day.
  • Evening primrose oil (Oenothera biennis) standardized extract, 500 – 1000 mg daily, as a source of gamma linolenic acid (GLA). Evening primrose pills have to be taken everyday maybe 1-2 pills daily after food. During the period, double up the intake to 3-4 pills a day after food.
  • Turmeric (Curcuma longa) standardized extract, 300 mg three times a day, for inflammation.
  • Ginger root powder in capsules

Studies:

  • Diet and vitamins — A variety of dietary changes and vitamin therapies has been reported to reduce the severity of menstrual pain, but data are limited to a few small studies. Although the limited available data appear promising, we would like to see confirmatory data from additional trials before suggesting these interventions for our patients.
  • In one clinical trial, 33 women with primary dysmenorrhea and premenstrual symptoms were randomly assigned, in a crossover design, to receive a low fat-vegetarian diet for two months or a placebo dietary supplement pill [9]. While on the vegetarian diet, the women noted a statistically significant decrease in menstrual pain intensity and duration, and they had a mean weight loss of 1.8 kg.
  • A self-report study of dietary dairy intake in 127 female university students indicated that women who consumed three or four servings of dairy products per day had lower rates of dysmenorrhea than women who consumed no dairy products.
  • Two randomized trials reported that vitamin E alone (500 units per day or 200 units twice per day, beginning two days before menses and continuing through the first three days of bleeding) was more effective than placebo for relieving dysmenorrhea in adolescents randomly assigned to either therapy, although both active drug and placebo reduced pain.
  • In a systematic review including mostly single small trials, vitamin B1 (100 mg daily), vitamin B6 (200 mg daily), and fish oil supplement (1080 mg eicosapentaenoic acid, 720 mg docosahexaenoic acid, and 1.5 mg vitamin E) were each more effective for reducing pain than placebo.

I don’t have links to these studies because they were sent to me by my doctor and I’m too tired to google them. Good luck, all!

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Parasite Puppeteers

Since I feel like doggy doo doo this week, I’ll entertain you by continuing to post things I think you should watch/read.

This: How Your Cat Is Making You Crazy.

Read it if you have a cat, read it if you have or know anyone with schizophrenia, read it if you are interested in how parasites can manipulate a host’s behavior for their own benefit, and definitely read it if you are simply fascinated by nature, how little we know about human biology and the seemingly infinite number of ways a body can be invaded. What we don’t know could fill a universe.

“What’s more, many experts think T. gondii may be far from the only microscopic puppeteer capable of pulling our strings. ‘My guess is that there are scads more examples of this going on in mammals, with parasites we’ve never even heard of,’ says Sapolsky.”

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Girl, Interrupted

Last Sunday, my husband woke up, gave both dogs baths, hoovered the downstairs of the house, tidied the kitchen, emptied the dishwasher, took the dogs to the park, went to the grocery store, came home and hoovered the upstairs of the house, emptied all the garbage bins, put the cover on the duvet and made the bed look nice and inviting, washed and replaced the unwieldy dog bed covers, scooped the dog poop in the yard, cooked dinner and also cooked soup for me to eat for lunch the next day, took out the rubbish and recycling, loaded the dishwasher and I’m sure there are many things I didn’t notice him do… I washed my cpap parts, soaked in an epsom salt bath for 15 minutes and did a few minutes of gentle stretches. That was the extent of my activity. Other than that, I sat or lay in different rooms of the house.

I spend an inordinate amount of time lying down in dark rooms. Meditating, resting, sleeping, trying to sleep, reading, thinking, crying. Somewhere along the line, I lost the ability to walk laps around my house, so I haven’t been outside in weeks ~ except to walk to the car for doctors’ appointments. I long to be outside. I want to breathe in great gasps of cool outdoor air. I want to feel my heart pumping and my muscles contracting. I want to see my dogs run and be able to dance along with them and not be crippled physically or crippled by the fear of movement. I imagine my brain functions like any other negative reinforcement situation. If you are bit badly by a dog, you may avoid dogs and be seized by fear when you see one. When I move a lot, talk a lot, cry a lot, react to a pill I take or don’t sleep well, I am overcome with foreboding about the backwards tumble that lies ahead. It extends to smaller things, too. I forgot my sunglasses yesterday for the drive to the doctor and I wondered if the light would take its toll on me, not only in the moment, but today. I had to move quickly to catch the phone when my Mother called the other day and I became annoyed that I hadn’t stopped myself… and then became afraid that the 3 seconds of faster movement and the 3 minutes of annoyance would worsen my symptoms. I’m trying to do less so I don’t continue to slip backwards, but not do less so I don’t decondition anymore in my body and mind. It’s a hard line to walk.

Last month, we were watching The Walking Dead (spoiler alert: if you are watching but aren’t caught up). There is a scene where the father runs across a large field carrying his dying son who is a not-so-small 9 or 10 year-old. I can’t stop thinking about that scene. Not because the kid got shot – (spoiler alert) I knew he’d survive – but because sometimes we will have to exert energy. There WILL be trauma in our lives and, somehow, we will have to weather it. I watched that scene, thinking, I would give anything in the world to know that I could run flat-out across a field, carrying a child and that I would be okay. That I wouldn’t then be confined to my bed for the next decade. I would give anything to know that I could handle an emergency and emotional upheaval without regressing into worse shape for who knows how long. At the bare minimum, I would give anything to simply be able to run across a field, minus the bleeding child and the chasing zombies.

Yesterday I was watching The Bachelor (spoiler alert: in case you thought I was remotely cool) and the contestants were canoeing and riding horses. This was rough to watch. In my youth, I used to do both of these activities a lot. I loved them and felt confident in my skills (at least with canoeing. I made a number of trips through the Boundary Waters in Northern Minnesota, isolated, carrying food bags, portaging from lake to lake. E and I took a trip together when we were, what? 16? That was ballsy. I don’t know if I would let my child disappear into the wilderness and hope that she and her friend would appear on a different lake a week later. But it was amazing and, now more than ever, I am so grateful for those memories). I watched those Bachelor contestants sit passively on top of the dozy, plodding ponies and then paddle over and over again into the shrubbery on either side of the river and I wanted to scream, AAaahhh! Give me that fucking paddle! Let me sit in the back of the canoe and steer for the next 5 hours, loving the ache in my shoulder, the strength of my biceps, the pull in my triceps… the sound of the canoe cutting through water and peace of surrounding nature. Let me sit on that horse! I can smell his coat and the saddle leather. I can feel the power beneath me and I just want to tap him with my heels and hold myself up with strong thighs and reliable calves, lean forward with no back pain and gallop. Or, at least, canter. The best feeling.

horse riding

Television and books ~ even watching my husband doing chores ~ are constant reminders of the things I can’t do and cause an endless roller coaster of emotions. Desire, jealousy, despair… and then gratitude for what I still have. I got up today after another bad night with no sleep and texted my friends that I felt like a walking corpse. The Walking Dead. But I don’t really walk much. And, I’m not dead, dammit. So, maybe my life right now is a bit Requiem For A Dream or Vertigo or Groundhog Day… But, maybe one day it’ll be Run Lola Run or Dances With Wolves… Or, simply, wonderfully Staying Alive.

oregon coast

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And Now For Something Completely Different…

My whole life my eyelashes have driven me nuts. They’re not inflamed or tingly, they don’t exactly itch… I used to say (this is gross) I could feel the bugs in the follicles moving around. My first memory of tugging at my lashes was in school when I was 10 years old. I remember where I was sitting and on which “fancy paper” I was writing ~ it had a horse design and I was using an eraser (which I then called a rubber) shaped like a watermelon slice. I had pulled out an eyelash and was inspecting it when I saw a classmate watching me and got embarrassed. Those of you that know me, will know the annoying eyelash syndrome of which I speak; I won’t go into more detail except to say that my eyes, lids and lashes were never dry, red, crusty, swollen or inflamed, so I never really thought about it much.

horse fancy papereraser

 

 

 

 

 

When I first had vision insurance in 2011, I got my eyes checked. My vision was still 20/20 and when I mentioned that my eyelashes bugged me a lot, the optometrist said I had dry eye and told me to get Systane dry eye drops. Last year, I had them checked again. It was during one of the Worst Headaches of My Life episodes, which was centered all behind one eye and I thought maybe the optometrist would see something. He didn’t. And my vision was still 20/20. But, he said, You have allergies that I can see in your eye and these dark circles are called “allergic shiners”. I got excited. Why had I never known this? (Although, my sister has the same dark circles and no allergies, so I was slightly skeptical.) He prescribed antihistamine eye drops which I swear made the annoyance worse. The little root mites were more irritated than ever.

Then one day I decided to research it because that has become my new profession: unpaid internet researcher of crazy physical conditions. By the way, did you read that NY Times article about the boy with arthritis? It’s long, but I highly recommend the read ~ especially for those of us trying to conquer diseases with diet and not drugs (plus, he drinks tart cherry juice like I do!). But I digress. I did some reading on eye maladies and my mild affliction didn’t seem to fit any of the descriptions (or look like any of the ABSOLUTELY DISGUSTING google images of eye problems. Ew, internet, I need to steel myself before looking at those sorts of pictures), but the remedy for blepharitis is to wash the eyelid with baby shampoo each day where the eyelashes meet the lid. I’ve been doing it and I think there is a difference. It’s too soon to tell, but I’m excited. I’m too sick to leave the house, but, by god, I won’t be tugging at my eyelashes! Unfortunately, my eyeBALLS have taken on a different life since I’ve been sick. They are not white anymore and they look like I’m a sick person, but this is new in the last year, so I’m not worrying about it. I’m just looking forward to one day wearing mascara again on lovely, full, long, itchless lashes.

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Warning: I’m Talking About Poop

I’m not going to lie, I’m scared. Again. Still. I don’t know my body anymore and I don’t know what’s around any corner. The thing I try not to talk about is: every single time I have collapsed on the first day of my period, it was triggered by a morning bowel movement. Also, I have come close to passing out and had the paramedics called twice from bowel pressure/ cramping without having my period. See why I don’t like writing about this and now you don’t like reading about it?

So, for months I have had these little bouts of tight chest and heart palpitations. They come on very quickly, very strongly ~ making me gasp for breath ~ and then leave just as quickly. I finally figured out they were triggered somehow by my bowels. Within minutes after a breathing/heart episode, I will have “movement” of some sort down below ~ maybe even just a gurgle ~ that wasn’t even perceptible when my lungs tightened and my heart pitter-patted. I assumed it was some sort of vasovagal reaction and have been ignoring it.

Well, this past week, I have had an uptick in IBS issues. I don’t know why; I’ve changed nothing with my diet or supplements. With the increased gut distress, has come much more prolonged chest symptoms. This morning, I spent hours with my heart skipping and racing and, once again, such a tight chest that I was spooked. I ate salt, drank water, lay on the ground with my feet up, did breathing exercises, canceled my sleep doctor appointment and kept the phone close. I knew my chest would release once my bowel calmed down, but it didn’t help my fear of the future. IBS is not one of the related ME/CFS conditions that I worry about. I worry about the fibromyalgia and chemical sensitivity (especially since the codeine reaction). But, if things don’t calm down, it’ll now be my prime focus. I don’t want to be on beta blockers or any other drugs to “manage” arrhythmias or blood pressure drops.

Lastly, for a week or two, I’ve been dizzy. This is a new symptom, too. The rooms spins when I move my head and when I just move my eyes all the way to the right or left. Again, if it gets any worse, it will be the number one most debilitating symptom. All of these (drug reactions, food reactions, IBS, dizziness) could make life much more difficult than it already is. I feel like I’m standing on a precipice on one foot… with my arms tied behind my back… in gale-force winds… eyes blindfolded, so I can’t see what new evil is coming at me or from where…

Not sure what I’m grateful for today. When I find it, I’ll let you know.

February 1st Addendum:

I think things are better today. I ate like a baby yesterday (apple sauce, cooked carrots, squash etc.), avoided supplements and I hope things will resolve themselves. Maybe it was just magnesium. I’ve been taking 500mg of mag oxide wondering why it wasn’t giving me any gastrointestinal issues… Maybe it just caught up with me after a few months. My doctor’s only two suggestions were anti-spasmodics for the bowel (uh, no) and a tilt-table test to address POTS. Let me repeat: I will do EVERYTHING POSSIBLE to avoid taking a test that induces scary symptoms that I try to avoid every day of my life just so a doctor can confirm that I get dizzy and sometimes my blood pressure and pulse bottom out. I already know that; I don’t need a test. Unless I have to do it for disability. But I haven’t got the nerve/energy up to tackle that yet.