Medications: Day 1

That's my girl on her dad.

Whoa, so not prepared for the first evening on the new meds. Savella is the type of medication where you have to introduce your body to it slowly, and let it build up in your system.
My first mistake was thinking I could eat a Frosty from Wendy's and then take the first dose and be fine. Such was not the case.
About 30-45 minutes after I took the first and lowest dose, I had some nausea and dizziness. It was so uncomfortable that I had to lay down in my car (we were out grabbing dinner and running errands) while my family finished dinner and made a grocery run. I was definitely out of it, so much so that I was slurring my words and not making much sense.
When we got home, I chowed down on some ramen noodles and felt so much better. The combination of more food, quiet and rest helped a lot. After that, I did feel better. I rested better too. I have to say it was one of the better sleeps I've had in a long time.
Tonight will be the second time I take the lowest dose and I will be better prepared. I have over the counter, anti-nausea chewable tabs, almonds, and more ramen.
I start classes tonight, so I'll have to wait till later to take my second dose, but at least I know better how to deal. The first night side effects weren't great, but I know I have to keep trying so I can get better and I am still trying to be positive (although more than anything I want to go home, skip class, and curl up in my sweats with my dog- see photo- and a good book).

Best and Most Uneventful Tuesday

From my Instagram Album

Today has been great. Seriously, I have never felt better. I mean that in the sense that I actually feel like I know where I'm going with my life. That still sounds weird...I don't have any life altering plans. I don't even know what I'm doing for dinner tonight. But after today, I feel like things are headed in the right direction.
I saw  my primary care doc today- she is the best, by the way and I'm so glad I finally found a doctor I like in a healthcare network I like- and now I feel like things are going to sort of go back to the way that they were or are at least back on track.
I went asking for a referral to a rheumatologist and what I got was a plan of care that is going to work better for me- which is what I need. Since I have already been diagnosed with FMS and I don't have any serious complications or autoimmune diseases, I don't need to see a rheumatologist. Instead, I can see MY doctor. I don't have to get to know anyone new and I don't have to pay the $40 specialist co-pay. What is even better is that my doctor listened to me and came up with a plan of care with me, instead of just for me.
So here it is:

• I start a new prescription for the Fibro called Savella (I will post about what it is and where to read about it).
• In one month, I go back to see how I'm doing. 
• She is going to treat my ADD (my last doctor insisted I see a psychiatrist once a week and would not prescribe a thing- so we were talking a psych visit once a week plus the cost of a prescription, and reporting back to my PCP. Yeah, that did not go over well). 
• If I need to see a counselor (which I may, because oh my goodness, I have never actually dealt with the emotional impact of being diagnosed with a chronic pain condition), I can.

All of these things, plus the sunshine, the fact that it's almost Labor Day weekend (read: long weekend) and I start classes again has made me hopeful. I hope I can get back on track with my health. I hope I can regain some control. I hope I can once again focus on my degree. My doctor did exactly what I needed: she listened and came up with a plan with me. Now I feel like I can have [most] of my life back (clearly without the somewhat self-destructive behavior of my early twenties).

Wake Up Call

Just a little something I took while walking the dog.

Friday I went to be screened to be part of a study on Fibromyalgia, and I had my doubts about my qualifications for the study, but not for the reasons I may actually not qualify.
I thought, just briefly, as I often do that maybe I don't have Fibro- it's all in my head and the pain I feel on a daily basis is actually caused my stress, lack of sleep or some other such ailment yet to be named. I walked into the office thinking I would walk out with nothing to show for my trip except for a few spins around the campus parking lot. I didn't think the experience was going to be easy, but I didn't expect it to be so hard- or rudely awakening (in a good way).
No, I walked in casually, trying not to make a big deal about anything even though I was nervous.  The girl who I met with was nice, she asked me questions about my Fibro that were easy to answer; I felt at ease and understood the tests- I had read the information and I didn't have any questions, and I was totally unprepared.

What I didn't expect was the response I got from the program coordinator, who I think is a nurse, but I'm not 100% positive. She was kind and honest, which I appreciate. More importantly, she knew more about Fibromyalgia than anyone I have ever talked to about it has. And more importantly than that, she opened my eyes to my reality.

For years, I have told myself that I can do this on my own and that nothing has changed. I told myself I could manage my pain through diet and exercise, and I let my fear of the unknown get in the way of the truth. The truth is, I can't. I can't do this alone or "naturally." Now that I think about it, the idea is almost absurd.
There I sat, in the chair in the lab, ready to give a blood sample, find out the next steps in this process, and go home to have a glass of wine and watch the sunset from my patio. What happened was an outburst of tears, something that has become pretty regular, and a reality check. I sat there, and listened as the program coordinator told me I hadn't quite registered enough on their scale for the study- I was too hypersensitive and they needed more. I won't go into the details of the screening process, but needless to say, I was floored. I thought I was in a good place, at least in a functioning place. 
She was surprised to learn I am not treating my FMS with any medications, and even more surprised when I told her I was trying to "do it naturally." I felt my eyes water, the lump in my throat, and I knew I didn't have control. What she said next was probably the only thing I needed to hear- I needed help and I didn't have to go through this alone.
She proceeded to explain how Fibromyalgia affects the brain, the role of Norepinephrine and Dopamine, and how there is a basic chemical imbalance in the brain of a person with FMS. She explained that the problem is not just the pain in the muscles, but also the chemical imbalance in the brain that can often lead to increased hypersensitivity- both physically and emotionally (hence the sporadic, uncontrollable crying- no seriously, she said the tearfulness is due to the hypersensitivity to everything). Without treating the chemical imbalance, it is almost impossible to treat the physical pain. She confirmed that I do have Fibro, especially since I have been diagnosed by a rheumatologist, that it's not all in my head, but often FMS patients feel that way.
I walked out feeling a little shaken up, but realized I needed to get help. I realized I can't do it by myself, and that's really ok.  In the long run, diet and exercise are going to help and need to be part of my treatment, but it can't be the only form of treatment. I've been more aware since I left the office; I've paid more attention to what I am doing and am trying to stop myself from over doing anything- so I won't spiral into more pain.

I've already made my doctors appointment to get a referral for a rheumatologist; hopefully for one who understands Fibromyalgia, who won't refer to it as "a junk diagnosis," and will be able to find a medication that will work for me. I will be going back in a week for a second try at the screening, fingers crossed it will go well.

Friday Night and Everything is Alright

Alright, Alright

I have been looking forward to today all week. I know, it's Friday, who hasn't been, right? Summertime Fridays typically include a post-work week beverage (lately it's been wine), a little grilling, and sitting on the patio with the hubsters while the kids run around in the yard. I, like most people with a M-F/9-5, look forward to the ritual that is Friday. 

This Friday will be different though. Today, I will be leaving work a little early to be screened as a potential participant in a Fibromyalgia study.  I've never participated in anything like this before, although once considered it several years ago.  I didn't participate in the first study for one particular reason: the side effects outweighed the benefits of the risk, and that scared me.

Avoidance is not always the best medicine

After having a not so positive experience with medications in 2008, I've avoided pharmaceutical treatment of my condition. In part, my avoidance comes from fear; I've been afraid of the side effects, afraid of the cost, and mostly afraid that the medication just won't work. The other part of my avoidance is a combination of my dislike for pharmaceutical companies and my desire to treat my Fibro symptoms as naturally as I can. Let's be honest, there isn't a magic pill for EVERYTHING, if there were (and it didn't cost your weight in gold), we would have a cure for AIDS, cancer, and any other disease that plagues our world. 

Sometimes it takes exercise and eating right to be healthy, and the responsibility for our health falls on us. I don't expect my husband, brother, mother, or doctor to tell they are sorry for my health issues; they aren't the cause of my condition and technically, I'm not either. However, I am in control of how I treat my condition and am therefore responsible for making sure it doesn't interfere with my daily life too much.

So, I have been avoiding prescription medications for my Fibro for some time, relying too much on over the counter, anti-inflammatory medications (which are just not enough for someone with my high level of pain). 

Diving In

Friday. Today. That's when I will be screened for the new study. I won't be going into details about it (unless they say I can). I stuck my big tow in and weighed the risk of the side effects against the benefit of participating. The side effects don't seem as bad as the first time I considered participating (less likely to gain weight, sweat more, and feel dizzy). I'm going completely out of my comfort zone to try this, to be part of an experiment that may help the Fibromyalgia community and potentially myself.  The thing is, I'm looking forward to it. I'm not as stressed about the side effects, but am more concerned I won't qualify.  What makes me look forward to the study the most though, is that there is a potential for the pain to stop. I would love to know what its like to live on a pain scale of 2, 3, or 4, and not a 6 or higher. I'm hoping I get to experience that, even if it's only for a 10 week trial.

I'll let you know how it goes.