My fight with Fibromyalgia

Fibromyalgia Awareness Day

Tue, 12 May 2009 12:08:18 GMT

Spreading awareness!! Post this to your journal and spread the word!

Problems Coping

Tue, 03 Mar 2009 21:56:21 GMT

Hi all.

I haven't posted to this community in over a year. I've gone through so much and have tried to hide my condition from the outside world.

In the last couple months, I have found the most wonderful man I have ever met. And because of him, I have a new outlook on life, hope, happiness and am starting to find inner peace.

But this illness is starting to take it's toll. I have anxiety issues, depression, and am losing touch with my acceptance of my condition. I'm tired all the time. My IBS has been flaring lately. I've been dizzy when I stand up, and if I stand for long periods of time, it's hard for me to handle. We even had to leave a wedding reception early this weekend because everything hit me at once and I wasn't well enough to stay.

I'm in a community choir that I really enjoy. Last night, I scarfed down a tiny tiny drumstick beforehand, and it wreaked havoc on my stomach during rehearsal. Like in church (LOL), we were told to sit, stand, sit and stand, and every time I stood up, I felt faint and did everything I could to not look like I was having stomach problems that should have had me doubled over. I looked around at the older ladies in the choir and felt so selfish and inferior because they weren't having any trouble standing. I wondered why I felt so horrible and the "why me" thoughts started swirling around my head. It got so bad that I had to walk out of the room. I went down to the bathroom and cried in the stall just so I could be alone.

I'm losing it guys. I've finally found happiness in love and I'm scared to death that my illness is going to chase that away from me. I'm scared that he's not going to want to be with someone sick like me and move on. I mean, he's been through alcoholism and has bad sciatic pain, so he can somewhat relate, but he doesn't have the emotional problems that I do.

I've finally realized that I need this forum and it's anonymity to talk me through this. I don't want to burden him, my family, or friends with this condition any more than I already have.

My anxiety has been bad since I met him. I went from being depressed every day to happy to anxious. I've talked to him about the anxiety, and he listens and tries to understand, but I don't fully trust it. Not because of his actions per se, but I know this illness is screwing with my anxiety levels.

I spent all day today in bed. I watched a video I had on Fibro, hoping it would make me feel better. But I just had to get this out.

He & I are starting yoga tomorrow. I had a very good experience with it a year ago and have been meaning to start back up. Plus, it will help him with his sciatic nerve and muscle cramps that plague him like my muscle fatigue does for me.

Anyway. Thanks for listening. I just needed to get this out. I need to know that I'm not alone anymore.

x-posted to fibromyalgia

Convenient?

Thu, 20 Sep 2007 00:17:54 GMT

Interesting. I asked for 1 month off of work per my Rheumatologist.

I was eligible for FMLA leave after 1 year of service. My last official day is Oct. 2nd... my one year anniversary would've been Oct. 28th.

Convenient? Coincidence?

::raises one eyebrow::

Uncomfortable

Mon, 17 Sep 2007 02:36:25 GMT

Holy crap am I uncomfortable tonight. It's hard to describe how I'm feeling too... it's just kind of a "I don't want to be in my skin" feeling. I took an extra Requip because I thought that would help, but I'm not sure if it did the trick. I'm starting to feel really anxious now and I don't know if I can fall asleep because of it. I may have to take double the dose of the Trazodone, but then I'll be asleep all day tomorrow.

Fuck this. I hate this!!! >:(

I think I'm gonna take a Vicodin to help me get through tonight. Dear God this sucks.

Trazodone

Tue, 11 Sep 2007 22:48:00 GMT

Holy crap was I nauseous last night. I was completely miserable, and even after taking it at 9:30, I didn't get to bed until 12:30. This morning was OK, I felt pretty drowsy until about 9:30, ate something, and then had to take a nap because it just hit me again all at once. Bleh. I finally got out of bed at noon & came to work. Bleh.

I actually feel pretty good right now. As a matter of fact, I feel more like myself today than I have in at least 2 months. Yay.

I'm not sure how much time I can make up here, but I'm gonna do as much as I can. Yay.

Update

Tue, 11 Sep 2007 00:12:17 GMT

Hi all!

It's been a while since I've posted here and I wanted to jot down my experiences.

I saw my sleep doctor today and he gave me Trazodone, so I'm hoping it helps with my slow-wave sleep disorder. I asked him about Xyrem today and he said he's had trouble getting it approved because they need "documented Narcolepsy" to administer it. He said he'd look into it though.

My Rhumy - ugh. I don't know about her. She seems to know a lot about Fibro, but everything I read contradicts it. She also told me that if I can't get the sleep issues under control, then the pain management won't help. (Well, duh!) She gave me Sonata, Requip, Wellbutrin & told me that she wanted me to take a month off of work to figure out my meds situation. My job is looking into it. :)

She also had me do a bone scan to rule out Rheumatoid Arthritis and now wants me to go in for a follow up CT Scan. Don't know why though.

Here are the meds I've tried in the past 2 months and my reactions to them:

Sleep Doc:

Vyvanse: Reverse reaction - made me dizzy tired. Tried it for a week, gave up.
Daytrana: Same thing as Vyvanse ("purer form" of Ritalin).
Provigil: Worked PHENOMENALLY well for a couple weeks, but had to keep upping the dose, until it just stopped working altogether. Very disappointed because of how well it worked at first.
Ambien: Works great for a day or two, then doesn't make a difference. Tried it on & off for a few days here & there, not convinced. Have bad hangover sleepiness most of the time.
Seroquel: Holy crap. 1 pill paralyzed me for 16-20 hours. 2nd day only slept for 1 hour. 3rd day, had BAD RLS symptoms, needed a Vicodin to calm me down. 4th day, didn't take it, had major withdrawal - cold sweats, temp went down to 96.4, then rose to 99 the next day. Horrible, never taking it again.
Temazepam: Holy crap, instant headache. No thanks.
Trazodone: Trying it for the first time tonight, am hopeful. He asked me today if I wanted something to wake me up or something to help my sleep. We're going the sleep route for now.

Rhumy:
Celebrex: Didn't do a thing.
Flexril: Works great, but after 3 days, get bad RLS symptoms. Not convinced that it's my answer though.
Requip: I've been on it for 3 days, and so far I like it. It gives me a "calming" feeling. Doesn't put me to sleep though. Used it in combination with Flexril - got OK sleep, but feel very groggy in the morning for a few hours. Still don't feel 100%, or even 80% for that matter, but better than the last couple weeks. Feel kind of
Skelaxin: Worked well when I was able to nap all day, but practically saw trails when taking it at work. Not sure on that one.
Sonata: Didn't notice it helping much at all.
Wellbutrin: Took a few samples but haven't gotten a script for it, so I haven't taken it in about a week. Isn't it supposed to hinder sleeping? GAHHH!! WHY did she give me this drug??

Well, that's it, I think. I've been able to get some rest over the past couple weekends, and it's helped, but I have a feeling I've hit bottom & I'm on the way up.

I also looked into that Fibrofix.com website, and I don't have high acidity (I tested my saliva, according to her instructions), so I don't know if any of her advice will help. Has any of it worked for you?

Anyone have any other advice? Suggestions? Reactions?
Thanks.

(x-posted to fibromyalgia)

Very depressed

Fri, 07 Sep 2007 18:17:02 GMT

I am beyond depressed today.

I feel very undesirable. Very disgusting. Very crippled. I want to curl up in a ball and die.

I couldn't sleep again last night. I took some NyQuil and then an Ambien and it didn't make a difference. I was still unable to fall asleep. So, finally, I got fed up around 2 AM and took another full Ambien (mind you, a couple weeks ago, 1/2 an Ambien was enough to get me to sleep through the night). I was WIDE awake until at least 3, and I was on the internet, bored out of my skull. So, when my alarm went off at 6:45, it was incorporated into my dream until 9 AM.

I dragged my ass into work and feel like I'm either going to throw up or pass out. It's a really strange feeling. It's very disconnected. Hard to explain.

The guy I'm interested in has not written me back yet. We exchanged a few, flirty emails 2 days ago about getting together this weekend, and then BOOM. Nothing. I'm starting to wonder if he is all talk. It really seemed like it had potential.

And then my friend sends me a txt message, "Bachelor Party tonight?" Damnit! My group of friends are going to be going to my friend's restaurant tonight for his bachelor party. And I'm stuck here 1/2 way across the country, too weak to even think about going there even if I wanted to.

Yes. I'm throwing a pity party for myself. I wish I could just sleep until BAM! Everything's back to normal or better... or SOMETHING! I'm not handling this very well.

Shoot me.

Wed, 05 Sep 2007 12:32:08 GMT

A sleepless night with cold sweats.

Today at work will be a joy.

Not.

I would call in, but I doubt I could sleep, since I was unsuccessful all night long.

Jesus.

Shoot me.

Cold sweats

Wed, 05 Sep 2007 09:03:54 GMT

I've had cold sweats all night long. I was sweating when I went to bed around 10:30, so I didn't turn on my electric blanket. Finally, at 3 AM, I brought it out and although I'm still sweating, I'm NOT hot. I even took my temperature and it was at 97.3, and went up to a whopping 97.5 after "warming up". I'm gonna take it again now, since I've been wrapped in this blanket for an hour. Hmm. Still only 97.5. And I am sweating my ass off. But I'm cold.

God, I'm miserable. I don't know how I'm going to work tomorrow. Er... in 4 hours.

Holy crap, what a weekend

Tue, 04 Sep 2007 18:34:33 GMT

Wow, what a crazy meds weekend.

A few months ago, when I was first diagnosed with my sleep disorder, my sleep doc gave me Seroquel. I took it (only 25mg!) and was paralyzed for 16 hours!! Wow, that med scared the shit out of me. I tried it again, cutting it in half and I was in bed for 10. I even tried cutting that half in half, and I was still too drowsy to accomplish anything.

Anyway, I came down with a cold on Friday, so on Saturday, I thought I'd try the Seroquel again. I told myself that I'd reserve it for the times when I was sick and really needed to sleep, so this was the perfect opportunity. I took it at 2 PM on Saturday, and didn't get out of bed until 11 AM the next morning. It was a long night - I had some really messed up dreams, and my body was so heavy that it was a chore to roll over. But! I felt a lot better once I woke up. My cold was almost gone, and I did feel rested.

So, I thought I'd take it on Sunday too. I took about an hour nap, and then was too awake to sleep. Hmm, maybe I just got used to it. I slept through the night OK, and got up around 10. And since I had that kind of reaction to it, I thought I'd take it last night and see how it works as a sleep aid.

Bad mistake. The RLS was SO BAD last night, that it was PAINFUL, and I was moving every 10 seconds or so. After about an hour of putting up with it, I finally gave up and took a Vicodin to knock me out. I knew I'd be sleepy in the morning, but I wasn't expecting to be as sleepy as I was. I called in to work and went back to sleep. Around 9:30, the drugs started wearing off, and every muscle in my body twitched. It wasn't like a seizure or anything, but just random twitches all over my body. It was awful. I was SO GLAD I called in.

But, I had to come to work, and even though I got here 1-1/2 hours later than I wanted to, I'm here. And I'm really sleepy too. Ugh. Will this ever end?

Fuccckkkkk

Thu, 30 Aug 2007 19:10:37 GMT

I am SO fired. I got this email from my boss today, regarding a database function that only I know how to do:

Would you please share your "How To Handbook" with the rest of the team. They have an interest in learning the procedures so they can use it as a filler and also be your backup. (Very thoughtful considering your current health concerns.)

If the opportunity for training some or all of them arises while I'm on vacation, please clear the time and feel free to proceed.

Thank you.

I've been asking for backup forever, and now that I have health concerns and need to take some time off, NOW I get the help?

This worries me. Especially since I talked to my girlfriend about it and she said that she didn't talk to them about it, and they're way too busy to learn this right now. Great. Plus, I don't really trust my boss. She'll say one thing and then turn around and do another. Bleh.

But there's really not much else I can do!! I'm so far past gone that I physically can't handle this anymore. GAHHHHH!!!! :(

Fuck.

Hating today already

Wed, 29 Aug 2007 12:19:56 GMT

I'm laying in bed, shaking. And I don't know why. I just stretched. My body hates me.

I have to go into work today. I don't have a choice. I'm out of sick and vacation time, and they're not paying me for the time I don't work.

I had a real hard time falling asleep last night. My RLS was bad, but it was way too late to take a Requip, considering it makes me drowsy all day. I'm going to start it on Friday. Thank God it's a 3 day weekend.

I just want to stay home and stay in bed. I don't want to face the world when I'm feeling this shitty. I don't want to have to put on my happy face and pretend I'm not miserable.

I don't know how much longer I can live like this. Sleep deprived, but sleeping all the time. It doesn't make sense. I wish my doctor would prescribe Xyrem. I have a feeling it's my wonder drug. I wish I wasn't banking on it so much. There's got to be something that works, right?

God, I wish I could just go back to sleep.

Fatigue Scale: 6

Day... what? Huh?

Tue, 21 Aug 2007 16:55:31 GMT

Duuuude... I'm practically seeing trails. I took the Skelaxin yesterday since I called in (holy flare, I thought I was gonna die. You should've seen the bags under my eyes!) and woke up from one of my naps in almost no pain! Yay! So, I took one today... and whoa. I'm really concentrating in order to keep myself awake. I practically have to tell each finger to move... and I'm stopping when I type every few words to compose the next couple words.

This is fucking RIDICULOUS!!! I can't believe I'm going through this right now. It's a never ending struggle.

I'm seriously thinking about asking my job if I can go down to part time for a couple of months until I can get this straightened out. In fact, I might talk to them about it today. God knows I can't afford it, but this is fucking TOR-TURE!!

Does ANYONE know how I can get my stage 4 sleep back? ANYONE? I feel so alone in a world of Fibro supporters. I can't even get my doctor to call me back.

I'm desperate. I'm on the verge of tears.

I CAN'T HANDLE THIS!!!

Fatigue Scale: 6

Fatigue scale

Tue, 21 Aug 2007 00:05:50 GMT

Dound this on the net today. Good to keep around...

I feel well-rested, even energetic. Life is good.
I'm a bit off today. Not too bad, just not a lot of pep.
I'm tired. I think I need to get more sleep.
I'm really tired. I'm getting desperate for some rest.
I'm as exhausted as I've ever been when I was well. I feel like I've been working really hard, with very little sleep for 3-4 days.
It's a struggle to function at all. I feel like I'm walking through a lead fog. Getting anything done is a sheer act of will.
I'm no longer functional. Just getting dressed has exhausted me. I'm either lying in bed or sitting on the couch.
Forget getting dressed. Just getting from the bed to the bathroom to the couch is all I can manage.
Need help to get from the bed to the bathroom. Forget the couch. I'm too weak to sit up.
Can't get out of bed without help. I'm terrified that I won't have the strength to take my next breath.

What am I at today? 8. Fuck this.

Fibro = Depression

Fri, 17 Aug 2007 22:53:44 GMT

I confirmed today that my depression has a direct link to the way I'm feeling.

This morning, I was a basket case. I was missing my ex, I cried in the bathroom because I was so tired and being forced to work (no sick time left) Once I woke up, my mood was great!

I really need to find a way to sleep better.

Woke up?

Fri, 17 Aug 2007 16:10:43 GMT

I think I finally woke up. Well, as awake as I have been lately. OMG this morning was horrific.

I still feel like crap though. My muscles are very stiff, and my response time is still very slow. But at least it's not DEFCON 5 anymore!!

Insane

Fri, 17 Aug 2007 13:35:16 GMT

I can't handle this. I'm going insane. I can't be this tired. I just want to pass out.

I want to scream! I want to cry! I want to GO BACK TO SLEEP!!!!!

WHY DO I HAVE TO BE AT WORK TODAY?!?

Kill me.

Pathetic

Fri, 17 Aug 2007 13:11:51 GMT

It feels so pathetic when I have to concentrate on WALKING. "Right. Left. Right. Left. Forward. You can do it."

I'm not handling this well.

Day 2

Fri, 17 Aug 2007 12:50:55 GMT

Took an Ambien at 9:15 last night and had a VERY hard time getting up this morning. Was only online for 10 minutes before stumbling downstairs to the shower. Got to work 10 minutes late too.

I'm DELIRIOUSLY tired. I can't even go through the motions - my mind is in a total state of confusion. I look at this computer and can't make a logical thought of what to do next. It's taking everything I have and my thoughts are coming at least twice as slow as they normally do.

Admitting it out loud to my co-worker right now just broke me. I'm crying now.

This is a nightmare. I can't believe I have to live like this every day.

Day 1

Thu, 16 Aug 2007 23:28:06 GMT

I created this journal to help keep track of my meds & health now that I've been diagnosed with Fibromyalgia.

Day 1:

Took Celebrex when directed. Before I left for work (8 AM) and at lunch (2 PM). I'm not sure if I like it. I have a pressure headache and I think it's causing it. But I'll give it a week, we'll see what happens.

Took Ambien last night around 9:30, but it's not putting me to sleep as well as it was at the beginning of the week. I told myself I'd try it for a week to see if it works, and I'm not convinced that it does. I've been exhausted all day.

The heating pac around my shoulders helps tremendously at work. Def glad I bought that.

Slept surrounded by an electric blanket last night, and it felt really good. It's amazing how much heat helps this. I think my Dr. is right when she says that if I moved to CA that 90% of my pain would go away.

-----

I'm tired of being tired all the time. I wish I could doze off whenever I felt like it. But this stupid sleep disorder is making my life a living hell. Who knew you couldn't get Stage 4 sleep? I feel like I sleep all night, but damnit, my mind wakes me up every 6 minutes. Fuck that. I can't handle this.