Category Archives: CFS/ME

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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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Mind The Abyss

I highly recommend you watch this. It brought me close to tears. His symptoms are nearly identical to mine… The vertigo, night sweats, crushing headaches… Only he had no pre existing conditions. This evil strikes anyone, it seems, at any time and, if I can recognise this constellation of symptoms, why can’t doctors even talk about it? Why is it such a dirty secret?

http://m.youtube.com/#/watch?v=GyxUVkfZ1Hk&desktop_uri=%2Fwatch%3Fv%3DGyxUVkfZ1Hk

If that link won’t let you open it, you can view it on the Phoenix Rising website ~ it’s the second video down.

PS: Thank you, Curiosity, for posting this video on your blog. xo

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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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In Other Conditions Doctors Don’t Give A Shit About News…

I have had reactive hypoglycemia for years. Of course, I didn’t have a name for it for a long time, I just knew that I had to graze all day in order to not be shaky. Is it a coincidence that this is one of the conditions that is associated with ME? I don’t know. My new doctor said it has to do with adrenal fatigue and it is absolutely likely that I was stressing my adrenals for a long time.

Hypoglycemia is yet another condition that is completely pooh-poohed by doctors and, in the grand scheme of things, I understand why. It is manageable for the most part and many patients have much worse things going on. But, that doesn’t mean it should be ignored and people shouldn’t be given constructive advice on how to stop their bodies from going through blood sugar roller coasters. That’s where I come in.

Just like (allopathic) doctors don’t discuss adrenal problems unless you have Addison’ s disease or Cushing’s syndrome, they don’t discuss hypoglycemia unless it is in the context of diabetes. Years ago, I talked to a doctor in Ireland about my blood sugar drops and I will never forget his response: “Ah, just eat a biscuit.” So, as usual, I had to do my own research. My fasting blood sugar is fine and, after lunch throughout the evening, it is usually stable around 80 or 90 mg/dL. But, after I eat breakfast, I have to beware. “Reactive” meaning my BS drops after eating a meal. I have a few rules: I know I have to eat a substantial breakfast and I always have to eat “elevensies” and I have to be wary of what I eat, using knowledge of the glycemic index. I’ve avoided almost all of my hypoglycemic episodes by switching from rice milk to almond milk (warning: rice has a very high score on the glycemic index, meaning it’ll cause your BS to soar and then crash).

But, still, there will always be days that I don’t manage it properly, like yesterday. I want to post about this because the physical effects from a BS crash are nothing to be scoffed at ~ especially when you have ME. It stresses your body just as an allergic drug reaction or a long conversation or a walk around the block stresses your body.

Yesterday, I ate oatmeal for breakfast with walnuts, pomegranate seeds, almond milk and flax meal. I thought that was pretty hearty and didn’t eat anything else for a few hours. Big mistake. My primary symptoms are extreme shakiness (worse than any caffeine or any other sort of tremors I have experienced) and blurry eyesight. And by “blurry eyesight” I mean it feels like my eyeballs are shaking as violently as my hands. It took me three tries to unzip my BS tester kit. It took me two tries to put the little testing strip in the reader (the first time I put it in backwards because I couldn’t see properly). While trying to load the wee needle, I stabbed myself deeply in the hand and just used that blood in the tester, which was good because I don’t think I would have managed the fine motor skills needed to load it anyway. My BS was 56 mg/dL. That’s low. I usually start shaking around 70. I poured the OJ all over the counter, trying to get it in the glass. I dropped my cracker with almond butter on the floor (sticky side down) while trying to navigate the distance from plate to mouth (okay, from counter to mouth ~ getting a plate from the cupboard would have taken too much time and put my feet in jeopardy from the likelihood of dropsies). The shakes didn’t subside quickly enough for my liking, so I ate half a Lara Bar and drank more OJ (this time without the glass, resulting in spilling down my shirt. Nope, not joking)… And then you get to deal with the symptoms of a BS spike: immediate headache, heart racing, exhaustion and a kind of extended vibration inside.

I was feeling pretty good yesterday morning and, after this episode, I was wiped out. It felt almost exactly like a hangover. I miss the days of a hangover caused by copious amounts of fun and whiskey, laughing and singing. I miss the days when a hangover was alleviated by a cheeseburger and Paul Newman’s lemonade. And I did this to myself! I KNOW that oatmeal often causes this to happen. I know I need to eat again an hour after breakfast. I knew I was feeling something off and ignored it, thinking, No, that hasn’t happened in ages. And I now know that my sick body doesn’t bounce back from these disruptions like my well body used to.

My advice: get acquainted with the glycemic index. Buy a BS tester kit and figure out whether you have fasting or reactive BS problems. Eat to minimise these episodes ~ even if you aren’t hungry. And do not underestimate how the roller coaster will affect your body. It’s exhausting.

Stay tuned for the next installment of Conditions Doctors Don’t Give A Shit About: Eyelashes That Drive You Crazy!