Tag Archives: supplements

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Try something different. Surrender.

After over a month it occurred to me that maybe just maybe this downturn has been caused by the break from my cpap. I guess, if I’m honest with myself, I didn’t quite believe my apnea was a problem. I sleep through my brain “waking up” 49 times an hour, but I don’t sleep through the cpap mask waking me up 20 times a night, so my subjective view of my sleep is that it is worse when I wear my cpap. What I know for sure is, my symptoms wax and wane in direct relation to how well I sleep. Although I know my ME/CFS was caused by viruses and the flu shot taking advantage of an extremely stressed and depleted body, I sometimes wonder, if I’d slept well my whole life and known about the apnea sooner, could I have avoided this illness?

When I went downhill in April, I reversed any changes I had made in the weeks before: I went back to Now Foods vitamin B2 and alpha lipoic acid, since I had recently changed brands. I stopped the Seriphos supplement, I stopped the Chinese herbs, I stopped driving anywhere, I stopped walking and doing stretches, I stopped taking baths since they raised my heart rate so much. But nothing has been working. I have to try something different. Since my health insurance is taking its sweet time approving my apnea dental device (shocker), it’s going to take well over a month to have it made. Verdict: back to the cpap. Keep your fingers crossed that this makes a difference.

My other plan is to surrender to this new low. Somebody on an ME/CFS forum recently said, “We may have lost everything in our lives, but WE HAVEN’T LOST OUR LIVES.” It stayed with me. I’ve spent 1.5 years fighting, investigating, grieving, pleading, hoping, wailing, warring… Again, time to try something different.

I’m sorry to throw quotes at you, but this, too, has stuck with me for weeks and it is my current inspiration:

Very little grows on jagged rock.
Be ground.  Be crumbled.
So wild flowers will come up
Where you are.

You have been stony for too many years.
Try something different.  Surrender.

~ Rumi

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New Beginnings

68 weeks sick.
45 weeks gluten-free.
40 weeks unemployed.
26 weeks on autoimmune diet + supplements.
23 weeks housebound.

This is my update.

For those of you just joining us, six months ago, my doctor put me on a anti-inflammatory diet that is supposedly good for autoimmune conditions.

These are the rules:

  • No gluten (that is, no pasta, no muffins, no pizza)
  • No grains (that is, no gluten-free bread or baked products, no rice, no popcorn, no tortillas)
  • No dairy (that is, no yogurt, no ice cream, no cheese)
  • No legumes (that is, no peanut butter, no hummus, no beans)
  • No nightshades (that is, no red pasta sauce, no mashed spuds, no hot sauce)
  • No sugar (yeah, right)
  • Only lean meats and fish

I have been horrifically strict (as in, I won’t eat soup with corn starch in it or the soy yogurts made with rice starch). However, I have allowed myself oats (must have granola for breakfast) and, although I’ll stay away from, say, foie gras, I am eating beef. A lot. Sugar, also, is difficult. I’ve cut down drastically, but I still eat dark chocolate every day and sweeten my granola with honey.

I feel no different from this diet. Besides the fact that I have no joy in food anymore. In my other life, I would have had fun researching recipes and learning to cook with new and interesting ingredients, but I don’t have the energy. I couldn’t stand in the kitchen long enough to cook a meal. So we rely on a lot of salads, stews, roast chicken with veg etc. And I eat more nuts than anyone on the planet and buckets of fruit. Ick.

IMG_20130209_155627 (1)

My Food Shelf

The other day my husband had a long chat with one of his old friends. Afterwards, he said, “I caught him up on how you are doing.” I scoffed: “So, you told him nothing’s changed?” He said, “Well, no… you’re worse.”

It took me back a bit… Yes, of course I am worse. I can’t do half what I could last summer ~ no dog park, no grocery shopping, no lunches with friends. I am only driving myself to places that are very close, I never have more than one phone conversation a day, I can’t walk as well as I could six months ago ~ my body has degenerated from so little movement. I’m in MUCH more pain ~ my spine, hips and muscles. The fibromyalgia-type pain only started in earnest after I left my job. I look worse. The lack of sun and fresh air have taken a toll on me. My sleep problems and emotional turmoil have aged me.

BUT, although I’m worse, I’m better, too. My sickly, shaky, evil nightly sweats are gone (except for the odd night) and that completely changes my life. I will never be able to adequately put into words what those malarial nights were like. Sleeping with the enemy. Also, my “nightly flu” has gotten better ~ the sudden increase in chills, aches, sore throat at around 6pm. There were so many evenings I would say, Okay, this time I’m really coming down with something. I still have those symptoms, but they are muted. The headaches eased up. Did you watch Mind The Abyss? After watching it, my husband said, “When the headaches came on…the man’s head held in his hands… that’s what struck me the most.” The severity of my headaches and the accompanying noise and light sensitivity altered my life more than perhaps any other symptom. The constant chills are gone… The ice in my bones, shallow breathing, tense muscles, uncontrollable shivers… This time last year, I COULD. NOT. GET. WARM. I rarely progress to the point of “bricked” anymore: where I hit a wall and I am grey, ashen, can’t move, can’t speak, weeping in a ball on the couch. My sleep is still a major concern ~ constant waking and endless adjusting from pain ~ but I get 8+ hours a night and that is a huge step forward. And, finally, my outlook is better. Don’t get me wrong, I mourn A LOT and feel alone and desperately sad (mostly when my symptoms increase), but, I laugh now and there is a semblance of acceptance. There was a point in time when I couldn’t smile. I tried, but they just weren’t there. It wasn’t depression, it was from pain. Pain sucks smiles away. And I had the knowledge that below the pain was the flu and below that was exhaustion and fear and a life I wouldn’t recognise.

I’m trying to forget about 70% of what I know about ME/CFS and follow my heart. So, yesterday, I threw the ball for the dogs and scooped the poop in the yard. Afterwards, I had a much harder time moving, but I thought, “Maybe it’s not a CRASH. Maybe it’s just because your muscles aren’t used to it. Maybe you’ll be okay. Tomorrow is a new beginning.” You never know what someone is going to say that will stick in your brain and help you through the days. My friend Z. suggested I think of new beginnings. Obviously this makes sense in the grand scheme of this new alien life. It’ll never be what it was and I have to eventually look at it as a new beginning and stop fighting it… But, I’m not quite there yet. I’m not ready to embrace this mortal coil as a new, permanent realty. However, every day can hold hope as a new beginning. Every hour. It’s kept me going through a bad week. After this bath, maybe I’ll feel better, maybe a new beginning. After this meditation, a new beginning. This moment, a new beginning.

Today I am grateful for all that is better and new hope for the future.

Launching my wish for the future, with husband and friends Z., J. and D. Thanksgiving, 2010.

Launching lanterns with our wishes for the future, with husband and friends Z., J. and D. I wrote, “I wish that we have long, healthy, happy lives.” My husband wrote, “What she said.” Thanksgiving, 2010.

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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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Update

My friend asked why she hadn’t heard from Elizabeth in a while, so I thought I’d give a quick update. The good news is, my sleep continues to improve. It is a goddamn miracle. I cannot tell you how poor my sleep has been my whole life and this last year was like someone was intentionally torturing me. I was in bed more than ever, but sleeping less than ever. Unfortunately, I was awake in bed alone, for those of you that might think “in bed but not sleeping” is some euphemism for sex. As you may remember, I have posted sleep graphs from my Zeo that show nights with either huge chucks of “awake” through the night or I wake up over and over again, interrupting the regular, beautiful sleep cycle. The sleep study said my brain woke up 49 times an hour. Maybe, if I got hooked up to all those sensors again, I would still have waking brain activity of which I’m not aware, but I doubt it would be bad. For weeks after my last post about sleep, I was getting about 7 1/2 to 7 3/4 hours a night. The last 5 nights I have slept between 8 and 9 hours each night. But the best part is, the last few nights I have only woken up a few times ~ 2 or 3. My god, that’s bliss. Imagine turning off the light and, 9 1/2 hours later, you’ve had 9 hours sleep. WhawhAAT? This was last night:

2013-01-21_08-28-08_928

I still don’t know what changed besides drinking tart cherry juice, so, although it has a high sugar content, I will continue to drink it each night with dinner. My real theory, though, is that my sleep is a product of the same thing that has caused me not to write a blog in a while: a quieter mind. When my brain won’t turn off, I want to write everything I think and I never feel peaceful enough to drift into slumber. So, maybe it’s my daily meditation or maybe I’m just tired of the fight, but this is life now and I think I’ve found a tiny bit of quiet. No doctor is going to make a miraculous discovery and this will not be a quick process. I have to rest. Full stop.

Unfortunately, the sleep has not helped my waking symptoms. I’ve actually been feeling worse this past week than I have since December 26th. My pain, achiness and stiffness has increased and my energy has declined. After having virtually no headache for about a week, it came back a few days ago. Wow, does that make a difference in my mood. I can still feel pretty upbeat and functional with all the other symptoms, but the headache decimates me, renders me silent and grimacing. “Decimate” technically means only destroying a tenth of something, right? What would be, say, half of something? Headaches quintimate me? Or septimate me? Would that be destroying 70% of me? Much better.

My Mom told me something that has kept me going lately. In one of the hundreds of articles I sent her, she read that if you are without pain for even one day, there is hope that you can be permanently pain-free. I do not hold out hope for pain-free, but that little gem of information has made me think that there could come a time when there are more pain-free days than crippled-and-crying days.

I’ll leave you all with good news. My period came and went and I didn’t have to take a single painkiller. It wasn’t painless by any means, but it was tolerable. I don’t know why. Maybe it’s the new diet, maybe it’s all the supplements. Also, I am seeing a new doctor this week. The universe sort of conspired to introduce me to him, so I’m heeding the hint and trying one. more. specialist. I’ll let you know how it goes.

Gratitude: For painless days that allow me to laugh and for good nights’ sleep.

irish proverb

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…and I will hug him and pet him and squeeze him…

I don’t think I have the energy to write much because I have big plans today like making a few phone calls and washing my cpap. I’m also determined to do my stretches today, which I haven’t been able to do for ages. I had 19 very bad days. The worst day of all was two days ago. My brother, a pilot, was in town overnight and I wasn’t able to see him. I haven’t seen him since August, 2011 ~ two months before I got sick. I kept thinking, I manage to get to a doctor appointment and talk for 45 minutes, but I’m not able to meet my brother for breakfast? But he has another layover here in two weeks, so I get a second chance.

Then, right after that horrible day, miraculously, yesterday I felt better. Not great, but better. I wish I could adequately describe the difference between a bad-but-not-horrible day and a good-but-not-great day. They are worlds apart. Instead of getting out of a chair like a crippled, arthritic 90 year old, I get up like a typical 39 year old who is in pain. Instead of walking up the stairs to the bathroom delicately, with difficulty, concentrating on each baby step and clutching at the walls, I walk up slowly, heavily, but without much thought. Instead of watching tv as still as a statue, unable to smile, needing to block my ears at loud noises, but having a hard time holding my hands up to my head, I can laugh and operate the remote control. Instead of unhappily eating an apple or drinking an Ensure to pad my stomach for the pills I have to take, I am hungry and look forward to eating a (really boring) meal.

I looked in the mirror yesterday and there was pink in my cheeks, but not in a feverish way. I had been ashen for weeks ~ grey skin, dull yellow eyes ~ and overnight it looked like I had taken a walk outside. It feels like the Monster, who has been crushing you in both hands for weeks on end, had to scratch his nose or something and, with one of his hands not pressing in on you, you are suddenly able to take a breath… to have a conversation without sweating and shaking… you are able to pet your dogs and hug your husband and make granola. And the whole time you are thinking, thank you thank you thank you. That is when I can see a tiny seed of hope. I have to remember in the despairing, dark days of pain, that there will be another day in the future when the Monster has to let go to answer the phone or smoke a cigarette or whatever… and you will be able to move a little easier.

monster

I saw the Good Doctor on Monday and she is adamant that I stay away from dairy, gluten and grains still. I am also back on all the same supplements as before, plus berberine to combat yeast and magnesium to help pain and sleep (note to those that may not know: magnesium glycinate is the form that should not mess with your bowels. Other forms can help you poop or cause diarrhea, depending on how much you take). I’m thrilled. After months of stagnation, I have forward momentum. I told her, “I don’t care what we do, but I have to do something. If you don’t want me back on the supplements yet, I’m going to start the Chinese herbs.” After much research online into ME/CFS experts’ protocols, I was bolstered to see many of the same supplements that the Good Doc has me on (CoQ10, fish oil, acetyl-L-carntine etc.). I started them again on Monday and I wonder if they contributed to the uptick on Thursday. Placebo effect doesn’t really work with this disease in me, as much as I wish it would. It might make me feel a little lighter or more hopeful, but the placebo effect cannot cause the difference between practically bedbound and able to walk and talk. It’s more likely the fact that I slept fairly well Wednesday night ~ 8.5 hours. My plan is to start Cymbalta on Monday or whenever the initial nausea from the supplements wears off… so I can deal with the initial nausea of the Cymbalta. Joy.

Here’s my daily regimen:

 daily pills