Thursday, June 4, 2009

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.


Somer Love said...

It will ALL be worth it! Xo Liss

Tough Cookie said...

I am so sorry you had such bad side effects from going off cymbalta. I thought you were going off of it for good... I didn't know you had to stop on accident! I am so sorry. That is seriously frightening. I just went off of mine for good about a month ago.

Tough Cookie said...

Oh whoops, am I reading this wrong? You are going off your pills on purpose to have a baby?!

Lissa said...

The first time I experienced the withdrawal it was an accident. But this time was quite on purpose. I don't think I will try it again after the baby either. Hopefully there will be something better in the next year or so.

Tough Cookie said...

Yea, I've had it all done. I have even had ketamine. I had an issue with a nerve compression before. I was a collegiate runner, and I had two surgeries to correct it. I was getting better and then one day, I was doing my PT and I turned my ankle. The pain came back full force, and it was RSD. I had a third surgery to fix the compression in my right foot that wasn't fixed by the first surgery. It wasn't a big deal at all. I wouldn't be scared if you ever have to have a surgery. They block the pain with an epidural and everything is fine. I didn't flare and it didn't make me worse either. :-)