Sleeping Beauty/Zombieland

Hey everyone,

I hope you all had a nice Thanksgiving. I have lots of updates to share.

First, I had my pain clinic follow up a couple of weeks ago. Thankfully, I've realized that my memory has gone down the tubes so I now carry around a journal to make sure that I document all of my appointments, as well as how I feel every day. Anyway, here's what I wrote in my journal from that visit:

Current symptoms:

• All over pain, primarily in my wrists, ankles, fingers, lower back, feet, clavicles, left shoulder, and sometimes neck
• Trouble sleeping (2-4 hours at a time max)
• Increased migraines due to lack of sleep
• extreme fatigue 3-4 days per week where I can't find the energy to do ANYTHING
• Bladder pain resurfacing

New info for Doctor:

• Joined the Y--started water walking and Aqua Zumba classes
• Found a massage therapist that specializes in fibro pain

Questions:

• What are the differences between Cymbalta and Lyrica for Fibromyalgia pain?
• Can I discontinue Gabapentin?
• Tizanadine is not effective for sleeping or pain any longer...what else can be prescribed to help me sleep/reduce stress and fatigue?
• Can I get a prescription for the Y? (so that my Health Savings Account can foot the bill)

The results:

• I was referred to a Urologist/Gynecologist, which are extremely rare and hard to get into, though I was able to get a January 27th appointment
• We decided that Cymbalta was the better of the two prescriptions for me to try for Fibromyalgia
• I have a year-long prescription for the Y. (YAY!!!!!!!!)
• I received another Percoset refill...90 pills for 30 days
• I received a prescription for Amatryptaline to help me sleep
• A DVD was on its way to me in the mail so that I could check out the recommended next step of spinal stimulation (Implantable stuff...yikes, yikes, YIKES!)

So, onto my blog title, which usually takes me forever to get to in my posts. I started Cymbalta and I have been doing almost nothing but sleeping since the day I started taking it. Every time I start getting used to it, I have to increase the dose!!!! The Amitryptaline made my sleepiness even worse, so I've stopped taking that for the moment. The kicker? I STILL can't fall asleep at night because my pelvic pain sets in during the evening and then I can't relax enough to catch my Z's until late into the night. So, while my husband somehow thinks I'm cute and Sleeping Beauty-like, the reality is that I'm a drooling, make-up free, smelly, tangled hair mess just about all of the time. Fortunately, I'm at my max dose now and I've been able to stay awake for an entire day and evening, though I haven't left the house yet because I feel like driving would be unsafe. I can't wait until next week to see if I'm feeling any better.

Until next time,

-S

Why, oh Y!

Disclaimer: I really do love going to the Y.

So, I was super-excited to go to the Aqua Zumba class this morning. This class started at 9:20 as opposed to the 12:10 class that I took on Wednesday. I rushed to get there by 9am this morning so that I could warm up in the water channel before class started. I got ready in the locker room and then walked into the pool area at about 9:10. To my dismay, I walked directly into the "Twinges in the Hinges" class that I was warned not to take. There was no way around talking to the dozen 70+ people in the area, who immediately started the chorus of, "you're way too young for this", "you're new here, aren't you?", "Oh! Someone new!", "Look how young she is!". So instead of being shy, my extroverted self came out and I said that my doctor sent me here, then proclaimed that I'm actually 73 years old as I started walking through the channel. I quickly clarified that I'm actually 32 and that I'm known for having a smart mouth. On lap two (they were all stopped and clinging to the wall for some legwork) I could literally here the game of telephone of "her doctor sent her"..."she said she's 73"..."she's new here"..."she has fibromyalgia"...and gossip as if I wasn't there. Glad that I could give them all something to talk about! In the end, many women were very nice and I was introduced to over half of them. And yes, they confirmed that the youngest person there is in their early 70's.

So, after that class ended, they all cleared out and Aqua Zumba was about to start. I looked around and once again, it was a much older crowd, but this crowd was not friendly to me at all. Not that they were unfriendly...just not friendly. I tried to make small talk a few times and it just wasn't happening. But, the workout is great and I'm not really concerned whether the people around me want to talk or not. Most of them gave up about halfway through anyway. As that group left all at once for the locker rooms, I decided to stay in the water for a bit so that I could avoid further gossip. Moral of the story??? Don't be early for Aqua Zumba on Fridays, and continue to go mid-day like I have been the rest of the week. I can't wait to be feeling well enough to use the equipment that people my age use! Also...these men and women in their 70's were having a great time, so it's a great glimpse into the future.

On another note--I've made it a day and a half without getting another migraine, and I actually fell asleep around 11:30 last night and didn't wake up until 5:30. A new record for me!!!!

Have a great weekend, everyone.

-S

It has a name...well, 2 names.

Hi,

As I often do, I left out a key detail in my last post. I was officially diagnosed with fibromyalgia-slash-myofacial pain syndrome. I'm kind of annoyed that the terms are being used interchangeably, because I feel like it would be nice to just have one diagnosis. Mostly though, it's because I would like to add only one, not two more things to my giant list of things that are wrong with me. Anyway, my primary care physician sent me the letter last week, stating she recommends one of two medications, but wants the pain clinic to treat it. But...she didn't immediately send a referral to the pain clinic. So, I got caught in the middle, making several calls and waiting a full week for action...which...was that I have to wait for an open appointment at the pain clinic. So now I have to wait until the 22nd to be seen and it's killing me because I haven't been able to sleep from the pain, which has set off a chain reaction of headaches, a horrific nosebleed, a general zombie-like state, neck and shoulder pain from being scrunched up with headaches, stress, and absolute crankiness.

Back to the Y now...

Day two was yesterday. It should have been the day before, but a migraine took that option out of the equation. Not surprisingly, I forgot my shower shoes AGAIN! yuck. Anyway, my new fibro friend pulled into the lot at the exact moment I did, which was exciting because we both knew that the time would fly by faster if we were chatting as we were water walking. We got to the pool and stepped into the current channel and quickly realized that we were going to have to walk with the current that day because the thing was cranked almost to the max. As we started walking, a woman with a "Zumba" shirt walked to the edge of the pool and asked if we would consider joining her Aqua Zumba class that was about to start because she only had 2 people and she needed 3 to do the class. So...we begrudgingly decided to check it out. Who knew that it would be so much fun! I was so fearful because I am sooooooo uncoordinated, but the great thing is that no one can see what you are doing underwater. :) I'll be back again on Friday for the earlier class.

Well, time to sign off for today. I've managed to destroy my hair in just two days in the pool, so I'm off for a haircut and a search for some kind of miracle shampoo.

Please send me your prayers and positive energy so that I may remember to bring shower shoes tomorrow.
-S

Water walking

Wow, is water walking a workout! I joined the YMCA today and spent almost an hour and a half in the current channel, a lazy river-like area of the warm water pool that is designed to be used by folks who have joint issues.

I am the first to admit that I am totally socially awkward in new situations and this was no exception. After signing up and getting my picture badge/swipe card (TERRIBLE picture), I got lost for a minute, as I do when I go almost anywhere with more than one room, while I tried to find the locker room. After almost giving up and using the completely not-private co-ed family room, and then the girls' (tween and teen) locker room, I finally remembered that the ladies locker room was a floor down...or was it up??? Anyway, I found it. Then I was instantly transported back to my Jr. High and High School days in swim class. The locker room was full of naked ladies (not like in the movies, gentlemen) and I remembered how much I hate changing into and out of swimsuits in locker rooms. So, I found a (dirty) locker, changed in the (dirty) bathroom stall and eyed up the (dirty) showers that I'd have to use after my workout. Ok, they weren't really THAT dirty, but they WERE old and I AM a germophobe. It was then that I realized that I forgot my shower/pool shoes. Dammit. So, I put my running shoes back on, grabbed my towel, locked up my stuff with my new combination lock (haven't used one of those in oh...15 years!), and headed to the pool area, which I miraculously found in just one try. Thankfully, the pool area was clean-looking and sparkly, and there was only one other person in the entire warm-water area when I got there. Showering later was rough on me...not gonna lie.

Anyway, when I walked into the current area and immediately thought, "Yikes!!!! This is going to be hard!!!!" It kind of was. There were two areas of the pool that I had to fight against every lap where the current must originate, and overall, the experience was pretty boring while I was walking by myself. Luckily, I Googled "water walking" before I got there so I knew that I should walk heel to toe, do some laps backwards, take some grapevine steps, etc, which helped pass the time. However, meeting someone else with Fibromyalgia is what really helped me pass the time.

My new Fibro friend had lots to tell me about the Y, Fibro and how she copes since she's been dealing with it for far longer than I have (She's 54 years old to my 32), and has been going to the Y for much longer. What valuable Y information did I learn? Don't take the "Twinges in the Hinges" aqua class for Fibro and Arthritis, unless you want to do small finger movements for minutes at a time, and unless I would like to be the youngest person in the class by literally 40 years. That group is made of folks in their 70's, 80's and 90's and they love to gossip according to my new friend...especially about the young ones...50's being young! So, I'm going to try a more vigorous class, but will stand in the back, just in case I can't keep up. :) Then later, she showed me the secret way back to the locker room so that I don't have to keep my id badge on me in the pool area and showed me how to use the suit dryer, which looks suspiciously like a golf ball cleaner, though bigger and automatic instead of hand-crank.

In the meantime, I'm still waiting for a call back from my pain clinic so that I can start a prescription for the Fibromyalgia. I'm hung up in the system again, so to speak, and I just don't feel like expanding on it now because I think it's at the point where a flowchart is needed to adequately explain the situation and I don't feel like pulling up Visio right now. ha.

Anyone taking bets on how sore I'm gonna be tomorrow after my first day at the Y?
-S

The anticipation alone may kill me

Hi folks,

I hope you're all still out there after my absence. I'm glad I shared my raw emotions the other day...I really don't do that very often. But, I'm SO sick of hearing stories about people being treated so poorly in that hospital. I can't even believe how great my current team of doctors has been, especially my primary care physician.

Transitioning to my blog post title now: I saw her last week because I've been having long-standing joint pain that is acting up again. I swear that I've had this pain as long as I can remember, but it's been very secondary to the chronic pain that I've been dealing with for the last few years. Anyway, I finally went to have it checked out and it looks like I'm going to be facing a diagnosis of Fibromyalgia. We're just waiting for tests to rule out Lyme disease (highly, highly unlikely), rheumatoid arthritis (very unlikely, though it is in my family), and probably something else that I can't remember. This test was done a week and a half ago and I was expecting to have the answers already. In my former clinic, I would have had to call no less than 5 times, leaving progressively more urgent messages, then get someone on the phone who would tell me that they are looking into it, and then miss the call back and have to start the process over again. They once made me wait 2 weeks to find the results of an ultrasound that showed a tumor had grown 3 cm and needed to be surgically removed!!!!!! When I called my new clinic today, I was thanked for calling, given detailed information as to the fact that one test didn't come back until last night, and that my wonderful doctor was actually typing up all of the results, along with a treatment plan, which would then be mailed to me. I was also told that they like when patients call, that they are happy to speak to me about anything after I receive the letter, and was thanked again. I swear, I sounded like an idiot because I was thanking her over and over and stating that this was a new experience for me! Oh yeah, and did I mention that they offered the flu shot to me instead of telling me I have to schedule an appointment for one. I think I'm in love. :) The moral of the story? Demand better of your health care providers if you aren't happy!

<3 bis_size="{"x":16,"y":602,"w":649,"h":143,"abs_x":181,"abs_y":765}" br="">On a final note, I'm going to join the local Y because they have a lovely warm-water pool and lazy river that I can walk in without putting stress on my body. I'm going to look awesome in a Speedo and swimcap compared to the folks who are probably 40 years older than me in the mornings! Sadly, I can't swim so I'll be walking in water and doing aerobics for now. As wonderful as yoga has been for me, it's not providing the cardio that I really need to be getting.

Results to be posted later on. Please pray for me!
-S