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.


Natalie said...

The prize for reading it comes from knowing that a friend is finding relief. I'm so happy that you are Living Life, not just making it through.

Menner said...

I totally agree with you that there is a hormonal element. I am HUGELY blessed that when I am pregnant the majority of my fibro symptoms disappear or are greatly reduced. What can it be besides hormonal?

The benefit does not continue during breastfeeding, however. I think that the hormonal connection is so obvious that I'm shocked that a ton of research hasn't been done on it and the implications it has for possible treatment.

Lissa said...

@Natalie: Thanks! I'm happy to be happy for what feels like the first time in my life.

@Maren:I also experienced relief of most of my symptoms during my first pregnancy. The RSD in my foot that I got from my car accident actually got a little worse, but the rest of the pain that I didn't know was Fibro at the time got better for the most part-- I either felt great, or really really terrible.

I researched it at the time and found that the same is true for women with MS and other auto-immune disorders. Some people think FMS might be an auto-immune disorder, meaning that the immune system is attacking the body somehow, but since the actual cause of FMS it still unknown there's no consensus. I read somewhere that during pregnancy the immune system is suppressed so that the baby will not be rejected, thereby suppressing the disorer as well.

Hormones dictate so much of how our bodies function, there has to be a connection somewhere. Western medicine is so good at only looking at part of the problem without considering the body as a whole. There are some very interesting clinics around town that treat the whole body from a wellness and healthy lifestyle standpoint, but of course none of them are covered by my insurance.

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