Tuesday, May 26, 2009

The Me Generation

Lately, I feel like I have read several articles about how self-obsessed my generation is. That we think our every thought or action is interesting enough to post on Facebook. That we construct entire shrines to ourselves on Myspace.

I have been feeling guiltiest of all for thinking my life is interesting enough to write an entire book about it.

The book has been through many incarnations. I have abandoned my efforts on Authonomy.com since none of the authors who have won the popularity contest have been offered publishing contracts. (For anyone interested... I almost won. I made it to the top 20 before they changed the rules.)

I am (occasionally) working hard on a major re-write. I am trying to make it read more like a novel with dialogue and description. It's hard and slow work, which is why I am rarely motivated to do it.

This is my new introduction. Any thoughts?

Ever since I walked in front of a speeding SUV 20 years ago, I have lived in constant pain. I remember keeping a smile on my face for my fifth grade class picture, even though my leg was on fire. Sashaying at the prom on a bed of red hot nails. Fighting to hear my college professors over my muscles and nerves screaming to be stretched and soothed. I remember neglecting my crying child because I did not have the strength to hold her.
Each day I depleted most of my mental and physical energy in my efforts to bend my life around pain. To make all the complexities of a joyful life fit into the tiny cracks and crevices of my mind and body that were not already filled to brimming with agony. I convinced myself that I was successful. I truly believed that the pain had not stolen my life from me, or turned me into a whisper of the person I should have been.
The brain has the most astounding ability to forget pain. But if it never goes away, you can never forget it. I never thought that pain could be an afterthought rather than the single most important factor in my every choice or action. Lately, I remember compensating for the pain for the last two thirds of my life, but I don't actually remember the burn anymore. I never thought that I could forget it.

I have been to more doctors than I care to admit-- not even asking for a cure, because that seemed impossible. I was just looking for an explanation. Every doctor said something different, but they all came to the same conclusion: there was nothing they could do. After spending two thirds of my life coping with this mysterious pain, I got so desperate, that I was willing to ask anyone for help. So there I was at a salon party, watching my friends sign up for free facials and waxes (Brazilians were extra). I forsook my shabby brows when I saw that I could get a free psychic reading. I thought the option seemed out of place at the salon, and I always try to keep an ear pressed to the door of the Universe, because I'm just positive that she speaks to me. Relax, kids. I don't hear voices, and I'm not crazy (probably not, anyway). Believe me, an occasional conversation with the sticky web of life that connects us all is not the biggest reason I should sport a straight jacket to all public functions-- that would be my mother's fault.
I asked the psychic about the pain. One of my doctors had just explained that genetic deformities in my muscles and bones could be the problem, and getting myself flattened by an SUV only made it worse. In other words, I had just been told that my body was made for pain.
I did my level best to not obsess about the spiritual implications of this theory, but let's face it: once an idea gets my pants all in a bunch, I just can't straighten them back out without some serious thought. I became convinced that I had been saddled with this hair shirt of a body on purpose. I had never, until that moment, felt like I was being punished by this pain. It's a popular question in the mountain of paperwork I always had to fill out at pain clinics:

41. Do you feel abandoned by a higher power? Yes No
42. Do you feel misunderstood by friends and family? Yes No
43. Do you feel that you are being punished? Yes No

I always circled no. The doctors were so impressed with me. I even got a glowing recommendation from a pain psychologist saying that, “she has such a positive attitude,” followed by the equally shiny, “I admire her goals, and her plan to accomplish them.” But suddenly, I had lost that shiny attitude.
The psychic had me cut the deck of cards in her hands, laid them on the table, and then proceeded to tell me loads of generalized nonsense about them. I waited with a pit in my stomach, wondering if I could even say the words out loud, and questioning why I ever thought this was a good idea. When I was positive I couldn't stew any longer, random word soup peppered with “pain, punished, and penance,” came bursting out like emotional projectile vomit.
She took a moment to collect her thoughts. “I really couldn't say why you have suffered all this time.” She seemed to be searching for something helpful to say. And then it hit her. “Maybe you could just ask the Universe if you could be done.”
At first I was offended by the simplicity of her conclusion, but as I previously explained, random thoughts get stuck in my head like a bad song. The longer I chewed on her words, the more I saw wisdom in them.
I had to let it go. I had to take action to find a solution. I had to tell the Universe that I'm done. I embarked on a journey to rid myself of pain, vowing to examine my past, present, and future for clues and a possible solution. Most difficult of all: I vowed to believe that someday I could live without pain. I never dreamed I would be so successful.
But let's start at the beginning.

Monday, May 18, 2009

A Rather Lengthy Essay That Won't Be Interesting to Anyone Without Chronic Pain

Well kids, I have reached the end of my six month body project. I'm wondering if I should extend it a little longer and see if I could soak up even more benefit, but I'm anxious to start on the baby project ;)

I am so excited to say that, at times, I experience 100% relief from my symptoms. I'm not claiming to have cured Fibromyalgia, because if I miss a dose of medication, push myself too hard, or lose precious sleep, the pain can be overwhelming. I was hoping that the more time I spent pain free would allow my brain to repair my natural pain defense system which has been abused by so many years of RSD pain in my foot. In the last week or so I have noticed that I can go longer between doses, and I can take less and still fell great. So perhaps it is working. If I could decrease my overall amount of of pain, it would ultimately make my pregnancy more comfortable since I can't take this cocktail of pills while knocked up.

I'm hoping that this little post will find it's way to the front page of google, so that the next troubled soul searching for answers won't have to sort through as much crap as I did. There are a lot of misconceptions about Fibro. I admit that I was guilty of thinking it was just a diagnosis for whiny women, and that I am still embarrassed to tell people that I have it, because I know what they might be thinking. Caution, the feminist soap box is about to come out of storage: nine out ten people with Fibromyalgia are women. To me, that clearly means that our hormones are involved, but for others (including the male-dominated medical profession) it apparently means that women are crazy anyway so this pain they complain about can't be real. I realize that there are a few ladies out there giving the rest of us a bad name. One afternoon at the bead store, I was lucky enough to overhear the following conversation.

Bessie: (shouts across the entire store) So my son asked me if I could watch my grandson after school. Don't get me wrong, I love the kid- but I says 'I'm not doing it unless you pay me. My time ain't free.'

Bertha: (from the other side of the store) That's right!

Bessie: It's not like I quit my job for fun. I've got the Fibormyalgia you know.

If I hadn't been there on business trying to match the color of bridesmaids dresses for one of my brides, I would have bolted for the door immediately in hopes of easing my turning tummy.

I don't know why I feel it's somehow different to discuss my pain disorder with entire blogging community. Probably because you all have chosen to read my ramblings. My purpose in all this really is to help other people feel better, so on to the results of my Body Project.

First a brief description of the problem, as far as I understand it. It's all about dopamine and endorphins, which regulate the body's response to stress or pain. Pain messages are chemical signals which travel up the spine and pool at the "pain gate" until there are enough to open the gate and travel to the brain. The brain then identifies the problem and responds by moving your hand away from a hot iron, or whatever the source of pain is. Then it releases endorphins to close the pain gate and block the signals so that the pain is decreased, or no longer felt at all. Dopamine is also released which increases sensations of pleasure and well-being.

But if the source of the pain or stress is ongoing, the system breaks down and levels of endorphins and dopamine become too low. The "pain gate" gets stuck open. Now pain messages flow freely to the brain. The body starts to send more chemical messages to get the brain to respond, so pain stimulus like a stubbed toe hurts way more than it should. This is called central sensitization. Researchers have actually convinced people to get spinal taps in the name of science. They measured lowered levels of neurotransmitters like dopamine in the spines of people with Fibromyalgia, as compared to people without it.

Dopamine is supposed to be replenished during sleep, so if the source of stress or pain interrupts sleep, then it becomes a self-perpetuating cycle. You can even sleep through the night without waking, but a body dealing with too much stress or pain never enters into truly restorative sleep.

Researchers have also studied oxygen levels in the muscles of people with Fibromyalgia and found that the blood is not replenishing the muscles with oxygen during exertion, resulting in pain. Chronically sore muscles bombard the brain with pain messages... and now we're back to the beginning of this mini science lesson.

There are two drugs normally used for Parkinson's disease which raise dopamine levels, but they are not FDA approved for Fibromyalgia. So finding a doctor who will prescribe them off label, or an insurance company to pay for them is difficult. For those determined to fight for them, the drugs are called Mirapex, and Requip. I've been told that they have terrible side-effects, and most people do not tolerate them well.

Perhaps as this brand new research on the connection between Fibromyalgia and dopamine is more widely accepted, there will be a better solution. But until then I have combed the internet and found a combination of drugs which increases other neurotransmitters in my brain, giving me 100% relief at times.

Here's a list of what I take:
Lyrica: (prescription) This is an anticonvulsant, and the first drug to be FDA approved to treat Fibromyalgia. It slows pain messages to the brain so that it can respond appropriately and doesn't receive too many at once. I take 50mg 2-3 times daily. One in the morning, one at night, and sometimes in the afternoon depending on how I feel.

Cymbalta: (prescription) This is a SSNRI (Selective Serotonin Norepinephrine Reuptake Inhibitor). It is the second drug to receive FDA approval for Fibro treatment. An SSNRI basically keeps the pain-fighting neurotransmitters in the brain longer so they are more readily available to close the pain gate. I take one 30mg pill at night. When I moved up to 60mg, I lost my sense of taste, and was too stoned to drive.

Both of these drugs help me sleep better, so that my brain naturally replenishes dopamine.

Flexeril: (prescription) It is a muscle relaxant which has helped me immensely. Less pain in the muscles means the fewer pain signal to deal with.

Ultracet: (prescription) This is a lower dose of Ultram plus tylenol. I threw up every time I took regular old Ultram, but I can take Ultracet with no problems. It is very effective on break through pain. But I only take it occasionally.

Now here's the important part: the vitamins. There are a few theories out there that part of the initial problem which eventually breaks down the dopamine/pain response system could be nutritional. I read about so many different supplements which are supposed to be helpful, and I was willing to try anything, so I ended up taking two or three handfuls of pills three times a day. One day at the vitamin store I found a supplement by Source Naturals called Fibro Response. Since it had Fibro in the name I picked it up and read the label. It had all the different supplements I was taking separately, all in one! In particular Magnesium, MSM, and the B vitamins are very helpful for energy, muscle and nerve pain. It also has co-enzyme Q10 and other naturally dopaminergenic supplements (meaning they increase dopamine in the brain). I didn't realize how much it helped me until I ran out of them on a Thursday. They are not cheap so I figured I would wait until Tuesday when vitamins are 15% off at Whole Foods! By Saturday I was really in pain again. The Lyrica, Cymbalta etc. were no longer working without the vitamins. As I move from the Body Project to the Baby Project I will have to drop the scary prescriptions. I'm excited to see if the vitamins alone will continue to relieve my symptoms.

Now that I have the pain under control, I am able to do light exercise which also increases dopamine naturally.

I take a few other things which may or may not be relevant to other people. I take Glucosamine/Chondroitin for neck and shoulder joint pain.

I also mentioned my theory that estrogen must be involved, since most of the people with Fibro are women. I had a raging case of estrogen dominance which cause a slew of problems. I fixed it with progesterone hormone therapy, and I maintain level hormones with Vitex, which has been taken by women for eons to regulate their cycles.

I wish I could give out a prize to anyone who finished reading this! It ended up being much longer than I intended. If anyone is moved to try this combination of pills, please let me know if it works for you, or if you have improved upon it somehow.

I simply must go now because my daughter is pouring a substance which sounds suspiciously like rice all over the kitchen floor, and an impatient bride in Chicago is expecting 9 bridesmaids necklaces to be finished today.


Saturday, May 9, 2009

The Time of My Life

So I'm sitting on my patio watching Lander finish up the yard work. Suddenly it hits me: I've never had more fun! I couldn't figure out why sitting on my patio admiring the yard was suddenly so pleasant- I've done it a million times. I searched my mind for clues as to why I was enjoying myself so much, so that I could hang on to that amazing feeling and possibly replicate it in the near future. Coming up blank, I took stock of the rest of my body. The reason I was experiencing the most amazingly calm, and pleasurably stimulating moment in almost 20 years: no pain. Not a drop! And here you thought it was Lander's formidable gardening skills, and impressive physique ;)