Remediating Fibromyalgia Pain

In my late twenties, I developed terrible asthma.  I ended up in the hospital and almost died.  This continued apace, really knocking me down.  Bear with me, it does relate.  A man taking a course I was teaching named Peter Pfeiffer told me that I seemed like a person with a dairy allergy.  He suggested that I go ten days without dairy and see if I felt better.  I did--it was like a miracle.  I was a new person.

I looked at my diet and discovered I was having cheese omelets for breakfast, toasted cheese sandwiches for lunch, macaroni and cheese for dinner (etc).  I literally did not know what to eat.  Dairy was in everything I ate.

I started substituting soy milk for milk, tofu and soy cheese for cheese and I developed fibromyalgia.  Slowly.  I didn't connect it with the soy.  But eventually, it got so bad I literally couldn't walk to the end of my driveway I was in so much pain.  I did a rotation diet and discovered it was the tofu and soy.  When I eliminated that, I felt better, BUT then I developed a sensitivity to beans, peas etc, especially the dried ones.  

Meanwhile, my allergist suggested reintroducing dairy, since I hadn't had it in many years--she thought I may have outgrown the allergy.  Wrong--I immediately developed asthma AND fibromyalgia (or fibromyalgia-like symptoms.)

What this means is that I have to prepare all my own meals from scratch because everything (all prepared foods) has either dairy or soy or both.  And it was the protein in dairy and the protein in soy that created the problem.

After experiencing fibromylagia so bad I literally couldn't walk, it now is more of an inconvenience most of the time.  I totally avoid sugar and refined grains (Which turn into sugar), nuts of all kinds, dairy, soy, caffeine (I have no soda, coffee, tea, chocolate etc).  I exercise (walk, run, bike) 45 minutes a day and go to bed around 10-10:30 (good sleep is essential).  I drink only water and eat only fresh whole foods, organic if possible.  I do eat nightshades, in limited quantities.

I do eat wheat (whole grain only) and have been considering testing that as well, since I still have some residual pain that flares up toward the end of a long walk.

Isolation and Loneliness

I read that isolation and loneliness contribute to depression and that isolation and depression contribute to dementia.  In any case, isolation isn't fun.

I'm home alone all day.  Keith comes home, and then, leaves again as soon as possible.  Today, he went to Home Depot, and then R'dale to do some work.  The work does need to be done.  AND he probably doesn't want to be with me when I am miserable.  I do not blame him.  I am miserable when I'm miserable.

I am also lonely.

And no one can come visit.  And really, no one can call.  Scott called this morning to be supportive, and I was in so much pain I couldn't concentrate or make good conversation or even be a good listener. I am stuck.  Alone.

I can read Cowbird stories, theoretically, or send emails, or go on facebook, but most of the day, I was in too much pain to sit and read or type.

Jogging in Place in the Shower

Jogging in Place in the Shower

I want desperately to take a shower.  I haven’t been able to take on in a number of days because of the pain.  It’s been hot, and I’ve had to use a heating pad nearly continuously, and that causes sweatiness.

But the pain makes it hard to stand.

Some of the things that help the pain include:

• Ø  hot water, hot baths, hot compresses
• Ø  walking, running or leaping about, depending how bad the pain is
• Ø  hugs and touch, massage
• Ø  ibuprofen (takes the edge off a little)

No one is here to hug me.  I’m an hour and a half into this round of ibuprofen.

The hot water helps some.  When it doesn’t help enough, I march in place under the water.  When it still hurts too much, I jog in place.  The washing and shampooing become hurried and urgent.  Luckily, no one is here to see me. 

I wonder how far I’ve run, if I were going forward.  Three quarters of a mile?  I‘m going pretty fast and that’s about how much ground I’d cover on foot in the time it takes to wash up, shampoo, shave my legs.  Shaving my legs at a dead run is pretty tricky though, I have to slow down to easy jog for that, then quick speed up to knock the pain down.  Owy.  Well, I did it!  I'm clean!

During the high-pain phase of the flare-up, I ran around the house (upstairs only, for the most part) reorganizing things because it hurt too much to sit.  Moving rapidly around seemed to help.

Suicide

Tulip Collaboration
with Gail Slaughter
(She took the photograph; I painted it)

This first section is copied from the New York Times and is only part of the total story there:

Suicide rates among middle-aged Americans have risen sharply in the past decade, prompting concern that a generation of baby boomers who have faced years of economic worry and easy access to prescription painkillers may be particularly vulnerable to self-inflicted harm.

More people now die of suicide than in car accidents, according to the Centers for Disease Control and Prevention, which published the findings in Friday’s issue of its Morbidity and Mortality Weekly Report. In 2010 there were 33,687 deaths from motor vehicle crashes and 38,364 suicides.

Although suicide rates are growing among both middle-aged men and women, far more men take their own lives. The suicide rate for middle-aged men was 27.3 deaths per 100,000, while for women it was 8.1 deaths per 100,000.


“It’s vastly underreported,” said Julie Phillips, an associate professor of sociology at Rutgers University who has published research on rising suicide rates. “We know we’re not counting all suicides.”


Another factor may be the widespread availability of opioid drugs like OxyContin and oxycodone, which can be particularly deadly in large doses.

*     *     *     *

I've written about suicide before.  More than once.  It may be a real option for me, later.

Last time I had this condition, I began to seriously consider suicide.  The unrelenting nearly unbearable pain, the worst pain of my life, went on and on and on.  How would I do it?  Sleeping pills, of course.  I guess.

So now, I'm reconsidering.  Thinking about suicide again.

I'm not ready to do it--I generally like being alive, except for this pain.  And, I'm afraid of the pain of dying and afraid of death itself.  I keep hoping for healing.  For some relief from the pain.  But when it's bad and I consider the options, suicide seems like one of them.

I recently threw away eleven bottles of sleeping pills.  I should have saved them.  If I do do it, I want to do a good job, not a half-assed one.  I do have more, and the others were expired.  I don't take sleeping pills any more.

*     *     *     *

Tulips, on the other hand, are one reason to stay alive.

Improved Fibromyalgia

Me, trying on hats at Greenfield Village 

The fibromyalgia isn't perfect, but it is MUCH improved!  YAY!

I am walking 45 minutes a day or more, doing sit-ups, other exercises and yoga stretching.

I am SLEEPING BETTER, a major factor in fibromyalgia, although still not perfectly.

What I think has made the difference is my diet:

I avoid:

• sugar, in all forms, but particularly added sweeteners.  I do not eat much fruit.  (I do eat some, but not every day, and very small portions.)  I do eat vegetables that include fruits, such as red peppers, but again, in limited quantities. I also avoid, whenever humanly possible, artificial sweeteners.
• refined grains (no white flour or white rice)
• dairy
• soy
• legumes
• nuts.  (I'm not sure about nut, but every time I test them, I have an insomniac night.  I hate testing, because of the often negative results.)
• desserts--no dessert of ANY KIND
• potatoes (and other high-glycemic foods)
• snack foods (potato chips, corn chips, etc) (This is really a repetition, the reason I avoid them is because they have high-glycemic foods and refined grains)

I eat:

• vegetables (except legumes)
• fish, poultry, meat, shellfish
• whole grains (with NO added white flour or grains)
• occasional small portions of fruit

And I exercise daily, which helps with sleeping, and which is made easier by my improved fibromyalgia, that is, my lessened pain.

A side-benny from my fibro diet is that I have lost weight.

However, I have a recurrence of a very painful medical condition, a fissure. I am writing about it in its own blog, FISSURE.

DANGER: MORE TMI

Do not read if easily offended:

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HELP!  I can't find my asshole!

I have to put a Canasa suppository into my anus every night, and the past couple nights, I couldn't find the opening.  I can't see down there, and it's all swollen and lumpy!  :-(  The suppositories have a very sharp tip and I was pressing and pressing and it wouldn't go in--it was between two lumps--not in the right place.  It hurt like heck!  I finally got it in, but I riled up the whole area trying.

Very TMI (My current "illness")

This is in the category of TMI--Too much information. I am including it here, because this is my "complaint" blog and because people have asked. Don't read if you are easily offended by unpleasant details.


A friend just asked, "What is wrong with you?


I said: There are many things wrong with me.  

But I think you mean, how am I sick.


It is sort of unpleasant and embarrassing, which is why I have not

explained more. 


My husband and I both had some intestinal bug that is going around (here).  It causes diarrhea.  I had it for six days, and, I took some Pepto Bismo after a while, because it was so bad.  I took it near the end of the six days and it caused bad constipation, which ripped my rectum.  I have an anal fissure.  It is very painful.  The doctor says it was caused by the combination of the irritation from the diarrhea followed by the sudden constipation.  It has been bleeding a lot and hurts badly.  I have to sit in a tub of hot water or on a heating pad.  Or both.  I cannot travel until it has healed.


If this is TMI (too much information), I apologize (but since you

asked  . .  .   )


I have been taking some medication and treatments.  The first few days it actually got worse and the bleeding increased.  But now, each day, it seems to be getting incrementally better.  The increments, so far, are very small.


I really want to be better in time to take my trip to NY to see my

children and grandchild.  I am also going (hopefully) because a poem of mine was chosen to be made into a giant poster to be displayed on kiosks in Syracuse NY and they are having a celebration the night of the 18th.  That was why I intended to go that day, after the opera on the 17th.

This is the second time this has happened to me.  Once it has

happened once, the risk increases for it to happen again.  The

medication that finally helped last time was Canasa.  Nothing else

worked.  My friend has suggested honey.  I haven't tried that yet.

Crackle

Crackle
Insomnia # 120628

Extra arms and legs appear in my bed,
like heads of the Hydra, every time I turn.
They pile like cordwood
against raw skin. Wherever I put them,
they sear, as if the flame
for which they were cut
burns hot already within them.
I twitch, exhausted, but not sleepy.
My body twists into a mobius strip,
a single surface of angst. Electricity crackles
and snaps down my spine, leaping from vertebrae
to vertebrae. My left foot circles and rears
like a stallion. When it leaps from the bed,
and drags the rest of me, protesting, with it,
out into canyons of darkness, I light the night
with the lantern that throbs
from my skull.

Mary Stebbins Taitt

Sleep Link

The transit of venus revisioned

The BBC had an article on sleep a while ago, which I just reread, and I've read the same information, maybe not as well put, before, elsewhere, I forget where.  The gist of it is that it may be normal and healthy to sleep four hours, get up for an hour or two, and then sleep again for four hours.

I do get up in the night and paint because I can't sleep, feel wide awake, but usually it is after laying awake for an hour or more at bed time.

I do sometimes wake up and feel wide awake also.

I wouldn't mind the getting and sleeping again, if I could still get enough sleep, and if it didn't get me out of sync with the rest of the world.  By which I mean, my family and community, my friends and so on.

I need to avoid "panicking" when I find myself awake at night. The anxiety keeps me awake when I might otherwise fall asleep again.

Last night I was laying awake and I said to myself, looks like another bad night and a little while later, I noticed I was falling asleep, and I woke myself up by being so excited and happy!

DUH!

But then I was relaxed about it and did go to sleep.

I woke up multiple times alter, but was feeling relaxed enough to go to sleep again.

Getting a good night's sleep helps with fibromyalgia and IBS!  If I don't sleep well, it's harder to accomplish things and I tend to be cranky and reactive.

(The image is from the transit of Venus across the SUN, but I have repurposed it here for a night scene.)

fasting gain

I am extremely bummed out because I've fasting for two days for a colonoscopy, and I GAINED WEIGHT!  AND I walked more than normal.  What's with that?

The good news is that my fibro is a little better.