The Body Project: Update

I really think I've done it! I think the Fibromyalgia is in remission, and the RSD/CRPS is still there, but it behaves itself most of the time. My feet still ache when they get cold, or I exert myself too much. And I get pretty achy at night, but I am 31 years old, so I guess that could be normal. Considering where I've been, and how severe my symptoms could be, I'll take a few age appropriate aches and pains. I am still overly sensitive to small injuries that really shouldn't be painful, so I guess my central nervous system could work a little better but believe me, I'm not complaining. I know that another disruption could easily happen, but I feel like I have the knowledge and the ability to reverse it again.

Speaking of being 31... I just had a birthday. I have been overwhelmed with caring for my sick family (and myself) so I have yet to post my thoughts about getting older.

They are brief, but here they are:
I am proud of myself and my choices.
I believe that I have created happiness in my life, and that I deserve it.
Good for me.

The Body Project: coda

So I thought I was done with the drug experiments since I'm trying to get pregnant and all, but in between cycles I've been taking my vitamins with gusto. This month I decided to try an immune system booster after reading about the research they're doing over at Stanford. They are using a prescription drug to boost the immune system of people with Fibromyalgia. They used to think that the cause of autoimmune disorders was an overactive immune system, but now they're wondering if it's the reverse. Considering how often I got sick (and stayed sick) I never thought it made sense.

I popped over to whole foods on Tuesday (in order to secure the 15% discount on vitamins, because I'm broke) and picked up a supplement for immunity support. It's only been a few days, and it may all be just a big coincidence, but I feel better today than I have in months. I have lots of energy, the pain feels manageable, AND I'm not dealing with all of the nasty side effects from the Lyrica and Cymbalta (hello extra 15 lbs... welcome to my hips! Please, stay a while!!)


Still taking the (Source Naturals) Fibro-Response and LOVING IT!
Whole Food's brand Immune Support and Glucosamine/Chondroitin

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.

http://www.sourcenaturals.com/products/GP1116/

artificial peace

I took this photo in the Presidio in San Francisco while I waited for Kris to finish the Nuts Across the Bay 12K in 2005.


It's like there's a politically inspired cease fire between my peripheral nervous system and my brain. Both sides are still angry, but they have been forced to get along by your friends and mine: Lyrica and Cymbalta. This duo is potent. I know that the Cybalta is supposed to take up to six weeks to fully work, and I'm still building up my dose, but I can already feel a change. Namely-- blithering intoxication. This would not be a problem if I didn't have a darling child to care for. I would love to drift into this drug induced stupor, but then who would burn, I mean cook the fries and chicken nuggets?

Besides my inability to follow conversations or drive my car, there is also a lovely numb sensation most of the time. That is unless I think about the fact that I feel numb. Then it subsides and the pain comes back to center or my attention. So I have to think about not thinking about the pain. If that makes sense.

Apparently neither my nerves nor brain seems to want to let go of it's nasty inflated pain signals. I'm pretty sure the drugs just help distract me from it all so that the fun numbness can invade my consciousness. This false sense of relief leaves me feeling nervous that at any moment the pain could come charging over it's borders, ending the cease fire for good.

It's official

Ever since I got an official fibromyalgia diagnosis, I have been lost in thought over the implications. Before I started to research it, I had a pretty bad impression of it-- just like most of the people I know.

My darling neighbor occasionally hosts his nephew, who travels to Salk Lake to see a specialist. My neighbor whispered under his breath that his nephew has... (with a quick scan of the street) "the fibromyalgia." He seemed embarrassed to tell me about it. I almost cried when the rhuematologist said, "FMS is a good fit for your symptoms." Not exactly a confidence-boosting delivery of the big news. But I just didn't know how to feel about suddenly being one of the crowd who has to explain that, "it's a real disease, no-- really it is."

People in pain have always faced skepticism (I am already intimately aware of that). Then add to that the fact that most of the people with this disorder are women, and our male doctors calling us all hysterical rather than admit that they don't understand or know how to treat the pain makes a lot more sense.

They say it's just a label, but now that I have the official fibro diagnosis, two things in my life have improved already. Medication is one. My Lyrica experiment is going shockingly well. I would say that I have had an 80% improvement in overall pain. I never thought that would happen. I am about to start Cymbalta this evening, which was only recently approved by the FDA to treat FMS. I watched a webinare (which is apparently a word now) and it explained with 8x10 color glossy picture with circles and arrows on the back of each one (not really) about ascending and descending pain signals. When I told my doctor that Lyrica works on ascending pain and Cymbalta works on descending pain messages, he said after a pregnant pause, "you're right! Those will work well together." So an understanding of the mechanisms of this pain, as well as access to new and exciting medication is my first benefit.

Allowing myself to be exhausted is the second. For 19 years and 4 months I have gone above and beyond to prove that I am fine! I may have pain, but I am fine, and I can do anything and everything the rest of you can!

But lately I have allowed myself to recognize that sometimes I am overwhelmed with exhaustion. When that happens I sit down. This is new for me. I think I like it. Thank god for hulu.