The Yoga Superstars (and me)

Let me preface this entry with a Body Project Update:
All three of you might remember that I attempted to ease my neurological and muscular pain disorder by experimenting with a few gifts from BIG PHARMA. I wanted to see if I could break the pain cycle and help my body eventually heal itself. I took Lyrica and Cymbalta for about 6 months, and felt like a drug addict thanks to a multitude of side effects, but I was pain free for the most part. The RSD/CRPS symptoms in my left leg were still in full swing, but my other limbs, back, neck, and face felt fabulous.

Then I went off all of the drugs. It was awful. The HORRENDOUS withdrawal process followed by the WORSE THAN EVER pain flare made me feel like a fantastic failure.

But after about three months, it dawned on me that I was feeling better. I realized that it had been more than two weeks since I needed to take 1-3 baths everyday to cope with pain. I noticed that my energy level was creeping back up. Everyone, pain disorder or not, has bad days and I am no exception. I don't feel great everyday, but I have many, many, more good days than bad. I have been treating this tiny remission very gently, terrified that if I got crazy and walked too far (like, say, from one side of the grocery store to the other) that an unstoppable pain cycle would start all over again.

Then I went to Yoga. I was (am!) sore-- don't get me wrong. But it used too be that my sore muscles would aggravate my nerves, which would cause a burning so intense I couldn't tolerate my clothes. IT DIDN'T HAPPEN THIS TIME!!! Can you tell that I'm a little excited?

I even went back to yoga tonight. I was late, and got sandwiched between Yoga Goddesses 1 and 2 with their headstands and adept Flipping the Dog. At one point my right arm was shaking so violently under the strain of my 97th inverted pose that I had to hold it still with my other hand. But I was there. I finished the class, and I felt amazing.

Namaste.

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

Body Project: Epilogue

Oh my, I have had a bad week. I knew it was coming though, and it is my own fault. I speak, of course, of withdrawal. My first taste of Cymbalta withdrawal came when I ran out of pills a few months ago, and I didn't make it to my doctor's office to pick up more before they closed on a Thursday. I thought it wouldn't matter if I missed just one dose, and then ran in to the doctor on Friday morning.

I woke up in a cold sweat. My jammies and sheets were soaked and I was freezing. I couldn't see, but this is normal for me in the morning. But even after I put in my contacts I still couldn't see a thing. It was like my brain and my eyes were failing to communicate. Every time I moved it felt like I was swimming in Jell-o and leaving trails of sparkling tracers in my path. My body was buzzing with an electrical charge, and waves of simultaneous nausea and pleasure were fogging my brain into near-inactivity. The best part is that with the flood of Serotonin and Norepinephrine I wasn't feeling an ounce of pain, however I was way too sick to appreciate it.

All of this would have been fine if I could have just slept the day away, except that I had to take care of my child and drive myself to the doctor. I don't know what I was thinking when I got in my car! I clearly wasn't thinking straight, but I felt compelled to go and get another dose of Cymbalta just to end the withdrawal circus. I drove as carefully as I could, and eventually I made it. I dragged myself and my squirmy baby to the top floor office (who puts a pain clinic on the third floor?!) only to find the lights off and the door locked. That's right. I had forgotten that the office was closed on Fridays. I could not figure out what I was supposed to do as I pondered the idea of spending the entire weekend in such a state.

I fumbled through the rest of my day somehow, and was attempting to attend my friend's birthday party, and pretend I wasn't all strung out when my sister called me on the phone.

"Why don't you just call the after-hours number?" she said.

Of course that was the right idea, and of course I hadn't thought of it. It had required immense amounts of concentration just to put my sandals on.

So there I was, begging the inept PA to call in a prescription for three pills. I would have to pay out of pocket, since he had not completed my Prior Authorization forms for the insurance yet, but by that point I was willing to pay, or do anything for another dose. I have never felt more like a junkie.

After handing over more than $6 per pill, I finally took another dose and fell asleep. All was right with the world again the next morning.

A week later I stepped down to half the dose, and got to spend another day at the withdrawal circus, but it was not as bad.

Back to the present: I have been going off all of my pills one at a time as I prepare for the Baby Project. Dropping the magic Fibro-Response Vitamin was the hardest, because without it, the Lyrica doesn't work at all (the vitamin by itself does not work either. There must be something about the combination.)

Being in pain again after experiencing relief for the first time in 20 years has been cruel. Since I was only 10 years old when the pain started I was actually able to form my adult life around the pain. I was not an athlete forced to give up my passions. I learned how to be a college student with the pain, instead of feeling ambushed in the middle of my studies by sudden illness. I rarely felt like I had lost anything to pain, but rather that I lived my life in spite of it. I would never turn down an invitation or a challenge because otherwise, I would never get to do anything. I felt like I had overcome so much and was able to live a rich life.

Then the pain went away most of the time. I could act without thinking about the pain consequences I would face later that night. I had boundless energy-- even enough to enjoy evenings out with friends and family. I had NEVER realized how easy life is without pain. Now that the pain is back, I have lost my ability to cope with it. When I try to go out in the evenings with friends, I barely have the energy to speak anymore. I have finally realized how much of my life the pain has taken from me, because I got to live without it for 8 weeks.

I have been left to wonder who I am. Am I the quiet, withdrawn person I have been for most of my life... that is when I am not making a Herculean effort to fake enthusiasm. Or am I really the girl who was funny, charming, and brimming with energy? Was that dose of personality just a side effect of medication, or was it my true self finally able to surface from the murky ocean of pain? But enough about my hyperbole-enriched identity crisis...

In case you are new around here, I have to stop all of my medication because I am planning to get pregnant again soon, and I obviously can't take them. Kicking the Lyrica was a snap-- I didn't even notice it was gone. I left the Cymbalta for last. The Cybalta alone was not providing any relief at all. The pain and my mood were both terrible. I think that means that my energy level and mood have more to to do with pain level than a separate case of depression. I have been excited to get it out of my system since it wasn't helping, and I really don't like putting useless chemicals in my body. But I have also been dreading the withdrawal.

It has been really bad, but I think I'm almost done with it. I have been perusing google lately, and have found several sad stories of people who desperately want to stop taking Cymbalta, but cannot face the withdrawal. They feel trapped, and like me, they had no idea it would happen before they started taking it. I am going to contact the FDA about my experience. If they get enough complaints, they will be forced to investigate. Perhaps Lilly (Big Pharma) will be forced to tell doctors about the severe withdrawal symptoms, so patients can make an informed choice before taking the drug.

I have put a lot of thought into adoption or using a surrogate so I could continue my medication, but I simply do not have enough money. I think it is cruel that the system has made it so hard for people who cannot have their own children to adopt, when there are lots of babies that need homes.

If I can get pregnant quickly, then I will hopefully be able to enjoy the remission of RSD and FMS that often comes with pregnancy. The theory is that they are both autoimmune disorders. Since the immune system is suppressed during pregnancy so that the body will not reject the baby, the symptoms are also suppressed. (This is why the RA drug Enbrel might help RSD, but I have yet to find a doctor who will prescribe it for me. I think I will make that my next body project after the baby.)

I hope that I can find an affordable source of donated breast milk, so that I could go back on the meds right after the birth. After all, I can't imagine taking care of a toddler, an infant, and dealing with the pain. But that is a bridge I will have to cross later. I am confident that I will get to the other side with flying colors because that's how I roll.

I know it will all be worth it.

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.

Body Project part III: Baby Blues

I feel like everyone I know is pregnant, and being pregnant myself is all I can think about. I decided to put off my next pregnancy for 6 months because of... you guessed it: pain. I can't explain how many things this pain has taken away from me, and I hate it when I am forced to change major plans like having a baby because of it.

I have taken this time to give the Lyrica a try and to focus on my health so that I can be as healthy and strong as possible for the next pregnancy. The pills are a great help, but if I forget to take it the pain comes back full force. I was hoping that reducing my pain levels with the pills would help to break the cycle of pain causing poor sleep and stress on the body, creating more pain. I was hoping that I could go without the medication eventually, if I got my body in order over the next few months. It's only been a month but I'm already feeling hopeless and like I'm wasting my time. I have been dealing with this for so long that it really seems impossible that it would ever go away.

The book I read about curing Fibromyalgia says that if I can eliminate my triggers then my symptoms will go away. It's so simple- why didn't I think of that?! Unfortunately the trigger that caused this whole disaster is the RSD/CRPS in my left leg, and that is never going to go away, since I don't have the guts to try the Ketamine coma any time soon. So now what do I do?

The lyrica gives me a significant reduction in overall pain levels and that is really exciting. Nothing I have ever taken before has worked this well, and I feel so lucky that it works for me. I have more energy these days, and it's only now that I feel better that I fully realize how limited my life has been. Since Lyrica causes birth defects in little mice, I have to stop taking it before the next baby. My biggest worry is that spending all this time without my full customary level of pain is going to ruin my ability to deal with it.

So this pretty much sums up my worries about when to get pregnant. Don't even get me started on if I should do it! What is I do have FMS and what if it does have a genetic component? Those are pretty big ifs to base such an important decision on.