Wednesday, January 6, 2010


So, the neurologist decided that I probably am suffering from Fibro Myalgia. On one hand, it sucks because there is no known cause or cure, just treatments. On the other hand, it is a relief to have a diagnosis that covers all my symptoms. this particular diagnosis means that I am not being whiny or wimpy. I really do have a problem that isn't just in my head.

I did as much research as I could about the condition and the treatments available. Three or four drugs have recently been cleared to be used for the treatment of FM. There isn't any information I can find about remission or symptoms easing up after time, just a bunch of stuff about people who have been taking drugs for years and now live happily. There are many support groups both online and in person, but I don't know if I am really the "support group" type. I admit freely that my mind works in hypocritical and judgmental ways. I don't actually agree with the thoughts that I get, but they are there, nonetheless. I don't want to be in a situation where I a) am encouraged to whine about how I feel, or b) have to listen to other people do the same. Not that I have ever been to a support group in person, but again I admit to thinking judgmentally and I know that I have preconceived notions about this.

I don't want to take drugs for years to be happy. I have already been on drugs for years, and while I am certainly more happy and decidedly more productive than I have been, I am FAR from where I want to be. As far as the headaches go, I have been through almost every headache maintenance medicine that there is and none of them seem to work well and all of them seem to have awful side effects. As far as the Gray Monster goes, my psych thinks it is actually Bi-Polar Disorder. That means a combination of medicines and not just one. Thankfully, those don't have too many side effects, and they do seem to help quite a bit. The issue there, is that getting off of them is difficult and extremely painful. I recently found a combination that helped to not only ban the Gray Monster, but it also helped ease the headaches quite a bit.

The goal has always been to arrest the problem and then become stable so that I can wean off the meds and and be "normal" (whatever that means.) So far, it has been a change from one med to another for the past eight years and no sign of getting rid of any of them. I hate to admit that I might need these drugs indefinitely, so I won't (admit it, that is.) A few times in the past year, I have tried to wean down to lower dosages in the hopes of eventually getting rid of one or more of them, but the withdrawal was so painful and the Monster was so persistent that I relented. I went back on the dose I was on before and tried to get back to "normal" as fast as I could. I lost weeks of my life trying to do this. It is scary to consider going through that again and I don't want my family to have to go through it with me.

The latest med that has been added in is the last straw for me. Something has to give somewhere or I will end up being a pharmaceutical junkie for the rest of my life.  It is my choice to take it or not, and I have chosen to - for the time being. That doesn't mean I have to like it. If it wasn't for the pain and fatigue that have caused me to all but quit my job, I wouldn't even be considering it. I just really need to the pain to stop.

Last night was the first dose of Lyrica, just 50 mg. I couldn't get to sleep until sometime after 2:00 am. This morning, I couldn't wake up until past 10:00 am. When I was finally able to wake up, I was sore, stiff, and achy. I don't know if that is a side effect of the medicine or if I am just having a bad day with pain already. The weather effects my pain level a lot and right now we are having the coldest weather that we have had in the last 10 years.  The headache I have is certainly from the weather (sinus pressure sucks) but the pain everywhere else, I can't be sure.  I know it is not my bed causing it. I have an excellent mattress (Tempurpedic rocks!) and I just bought a new pillow as well (thank you Wonderful Parents In-Law!) So either the weather (or something else) is causing the elevated level of pain today and I haven't been on the meds long enough for it to help, or the Lyrica is actually making things worse. I probably won't know for a few more days, yet.

My hope is that I will be able to get enough relief from the new medication that I will feel better enough to move around more, exercise more, and potentially go back to work. I could start walking around my neighborhood (which is well made for walking) but it is so cold right now, it makes me hurt worse just to go from the door to the car. I would love to find a yoga studio around here that I could join (that wouldn't cost me more than my rent.) I don't really feel comfortable doing yoga at home because of the environment (and the dog who thinks sitting on the floor means play time.) So having a place to go is important for me.

There is one other option for me. I could go to see Dr. M. He is a doctor that I have seen in the past who is both an M.D. and a chiropractor. He also has a massage therapist in his office and he has a sports rehab area for exercises. He is a really good doctor and I really like him and his theories on healthy living. The issue I have is that seeing him is a weekly (or more often) commitment of time and money. Time, I have. Transportation and desire, I have. The money is the issue. We have a limited amount of money set aside for medical expenses. Once we go through that limit, we pay out of pocket for everything - meds, appointments, emergencies, etc. We have excellent insurance, but paying for the co-pays and meds can be very taxing in my family. Little Heart takes three prescriptions and an OTC every day. I take three prescriptions (which are NOT generic and are very expensive) every day. Little Heart has two cardiology appointments per year and at least one check-up and now we also have to prepare for more orthopaedic visits since she has broken her arm. Winter isn't nearly over yet so I have to make sure we are prepared for emergencies related to cold weather (flu, pneumonia, slips on the ice...)

I really think that seeing Dr. M will help out in the long run. I just have a problem with using up our medical money to see him every week. It feels selfish to do that. On the other hand, it isn't really helping anyone for me to sit here and hurt and not take the right steps to get back on my feet.

What do you think? Should I keep taking the Lyrica and see what it can do, or just pitch the whole idea of more meds and start seeing Dr. M? Is there any other option I haven't explored?

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