I haven't been on here lately because I'm currently working on my senior thesis paper. Luckily, I'm obsessed with my topic, and I've pretty much blown through nearly 8 books on it in the past 3 weeks, thus, my recent neglect of the blogosphere.
So an issue has been arising more and more lately. My friends want to hang out. They want to go do things we used to do. They know about my fibromyalgia, but I don't believe they fully understand it at all. Most of them are so young that they haven't ever been exposed to illnesses, unless it was a grandparent. But I'm young and my illness is invisible, so I think my situation totally goes over their heads.
My friend Ali wants me to go see one of our favorite local bands. But I can't do that anymore. It's not just that I can't dance because of pain, or that I'm too exhausted to even enjoy myself, but I have visual and hearing sensitivities. The lights and sounds and just the "busyness" of being in a crowd would send me into sensory overload faster than Uncle Earl's heart at a Shakira concert.
The crazy lights I once loved during their shows would hurt my eyes and give me a headache. Being in a crowd of familiar faces and dancing around would only bring me a lot of pain when bumping into people, that is, if my joints can even handle standing for more than 10 minutes at a time. Likewise, the heat of being in the crowd would have me drenched in sweat within minutes, causing me to feel weak.The music that I love would be way too loud, causing nausea and possibly muscle spams. And all of this would eventually lead to tremors or muscle jerking, and I would eventually faint.
And Josh, he wants to go on a walk and have deep, philosophical discussions like we always have. But I can't follow, let alone participate, in those types of discussions with him anymore. If I'm lucky enough to actually be able to formulate profound thoughts, I can't articulate them. Josh and I built our friendship on challenging each other intellectually, and though I have philosophical conversations with many people, none are nearly as deep as those I traditionally have with Josh.
But I can't take 3 hour long walks anymore. I hurt, I'm weak, I'm tired, I'm out of breath. And I feel as though my IQ has dropped significantly since fibromyalgia. I have a strong sense of what I want to say or what I believe or am trying to explain, but I simply can't articulate it anymore. And I definitely can't understand what Josh spouts out.
Everyone wants to hang out. They want to go out and party. I tell them that I'm too exhausted or feeling too sick to do things. They don't quite grasp the fact that this isn't some regular flu. In two weeks, I will still feel sick. In two months, two years... it won't matter. Fibro is here to stay.
The usual scenario is that someone will ask me to hang out. I'll tell them I'm not up to it, and they're usually really understanding and they back off... for about two weeks. And then they ask again. And the cycle repeats.
I used to drink and go out dancing all night. I used to play video games. I used to be a bartender and would bartend at my friends' parties and get togethers for free. I used to run and lift weights. I used to take day long shopping trips, whether I actually bought something or not. I used to play guitar and jam with my guy friends.
But I simply can't handle these things anymore. My guy friends try to accommodate a lot and suggest the laid back alternative of video game night. But even that I have to turn down, since it causes sensory overload. All I'm really able to do these days without pushing myself too hard is go to the movies or watch movies at home. My very best friend has been the most accommodating, but I fear even she is growing bored of movies.
There are just so many physical obstacles, it's ridiculous. I feel crazy. I feel as though I'm making excuses. I feel incredibly guilty that my friendships are becoming difficult to maintain and I'm simply falling back on years and years of friendship to keep them going right now.
My friends at school are particularly bewildered by my condition. They'll say they see me walking to class or they saw me in class and that I looked fine. And sure, I can handle walking to my classes with a tiny limp and I pull off appearing normal. I walk 5 minutes to my class, where I simply sit for an hour or so once I arrive. Then I walk two minutes over to my next class, and sit for another hour or so. Finally, I take a less than 10 minute walk back to my apartment.
I look fine walking to class. And I look fine sitting in class. And this is what they see.
What they don't see, is that it takes me 3 hours to get ready in the morning. I try my best to look "normal" because I don't want my illness to become my identifier, not in my last semester of school. When I get ready in the mornings, it's a huge struggle to get out of the bed, to shower, to blow dry my hair, to put on my clothes and a dreaded freaking bra! They don't see all of the "time outs" I have to take during that process because of pain, or weakness, or exhaustion, or simply to catch my breath.
They don't see my many morning pills that I take, or the bi-weekly injections I give myself. They don't see the shower chair, or the painful morning stretching to help ease the stiffness.
They don't see what happens after class, either. Sure, they see me on campus and I look fine. But I'm only walking 5 minutes at a time, and I'm only sitting during class. They don't see what happens when I return to my apartment. The walking I did to class will likely be the only walking I'll do that day. I'll come home and take more pills. I'll pile on heating pads, turn on a TENS unit. I'll avoid eating because I'm so nauseous and by the time I eat, it's a very real possibility that I'll just throw it back up.
I experience a regular flare up of symptoms at night. It's usually when I'm at my worst. My sinus' will start acting up, I may have some tremors or body jerks, none of which they see. They also can't see me wincing in pain from muscle spasms. They can't see how exhausted I am and how difficult it is to go to sleep. They can't see how much my mental clarity has decreased.
Funny enough, my roommate is also very oblivious to most of this. This is partially because she is extremely self-absorbed and also because I do a pretty good job of never vocalizing what's going on. She either doesn't notice my involuntary movements or assumes they're intentional. My pills are also in my room, out of her sight.
She does know I frequently go to my room for 5-10 minute intervals throughout the night (I assume she notices, at least). This could be because of bathroom urgencies, or because I want to be in private while a tremor passes, or because I recognized an aura for a drop attack or for fainting.
I mean, if you don't vocalize pain, exhaustion, or many of the other symptoms, it's pretty damn easy to appear normal.
Bleh. How do I explain this to my peers? I've thought about sharing the Spoon Theory, or simply writing out my symptoms and briefly explaining them and just post it on Facebook so everyone will know, and hopefully understand better. Unfortunately, I hate drawing attention to this and it makes me feel extremely self-conscious. I can't help but feel like I'm making excuses, and it certainly feels as though it would come off that way.
It's not that I sit at home depressed all the time. I'm not depressed at all, and I'm fine with spending all of my time reading in the quiet company of my roommate. I occasionally go out, but it depends on how I feel and it depends on the activity. Some things I simply cannot do anymore, as much as I want to and as much as I've tried, it's just out of the question at this time.
I'm having a bit of trouble staying focused and organized right now. I guess my point is, unless I vocalize what's going on, people around me assume I'm fine. It's the curse of the invisible illness. I love it in that I can conceal my illness from strangers and have control over who knows and who does not, but I hate it when it comes to my friends. They can't comprehend what goes on within my body, and I don't know how to make a bunch of 18-22 year olds understand something like this. Especially since I used to be so active before.
I also never keep up with Facebook anymore. I was always terrible with keeping up with internet shenanigans, but now... well, it's like anyone with a bad flu. Generally, you go on a hiatus until it subsides. But my "flu" won't subside. I simply don't want to deal with the internet or phone, largely due to the fact that I know doing so will cause me a lot of stress and guilt. I know people will and are asking me to hang out, and odds are, I'll forget that they even contacted me before I can respond, which usually leads them to believe I'm intentionally ignoring them. When I do respond, I'm just telling them the same thing I've told them time and time again and although I can see they're trying to be understanding and supportive, their disappointment is more than clear.
I just don't know what to do at this point. I know what I'm going through is real, but I can't help but feel like I'm making excuses or that that's how it's going to come off. I know this is something everyone with an invisible illness deals with, so if anyone has any advice, I'd greatly appreciate it right about now.
Wednesday, April 11, 2012
Tuesday, March 27, 2012
Medical Marijuana.
Note: Experiencing a lot of fibro fog today, so please excuse errors, disorganization or the like :)
I realize this issue may be controversial for some, but it's something I can't ignore at this point.
I don't want to get into any sort of political debate about this, at least not on here, as it's not my intention. But I am, and always have been, an advocate for medical marijuana. In high school, we found out my mom had MS. My parents sat us down and we had a family discussion about what MS was, what to expect, what course of action we would take, ect... This is when my dad made a powerful statement.
He told us that if my mom's condition worsened, or if any of us ever developed some sort of medical need, that he would grow marijuana himself if it would help us.
Some people may see that statement as defiant and a blatant disregard for the law; I saw it as one of the most moving things anyone has ever said to me.
We all know what fate users, growers and dealers suffer if they are caught. Sure, a lot of them are criminals in other ways, and I could argue against the current drug laws until I'm blue in the face, but that isn't the point. There are many good people, who are otherwise ordinary, law abiding citizens who are imprisoned every year for partaking in marijuana use, whether for medical reasons or not. We waste our tax dollars on overpopulating our prisons with these "criminals" guilty of victimless crimes as though they deserve to have their rights stripped away from them and be treated as a threat to society, instead of utilizing our energy, money, and resources to bring actual criminals - like thieves, murders and rapists - to justice. And even more disturbing, we do all of this instead of helping those truly in need of the medical benefits marijuana can offer.
/rant
I digress. What my dad said was a great testament to his willingness to make a huge and courageous sacrifice - of his life, liberty, property, and happiness - for his family if such an unfortunate circumstance required.
I always remembered that. I thought by now such a process would start, as my mother's MS should have progressed. But luckily, it hasn't, which leads us to believe her MS is benign. Thank goodness for that, I'd be totally lost without that crazy woman.
But now, my father finds himself with a daughter with 4 incurable diseases, loads of syndromes (associated with fibro), and no spleen.
And after failed treatment after failed treatment, I'm becoming discouraged. Normally, I wouldn't try any of these hard prescription drugs. I honestly just don't feel comfortable with them, for many reasons. But I'll do almost anything to get me through this semester so I can graduate.
One week in particular, I was doing horribly. No sleep, tons of pain, no appetite due to nausea, ect... I went to bed at 7 after a couple of nights, since I knew it would be hours before I could actually fall asleep. My neighbors came over and asked my roommate why I was in bed so earlier. She told them what had been going on and the next day they dropped by again just to check on how I was feeling, which was just as horrid as the previous few days.
That's when they offered to let me smoke some of their bud. Considering my breathing issues, I declined.
While I am and always have been 100% behind medicinal marijuana, I still feel uncomfortable breaking the law, not because I'm committing a "crime" but because getting caught would lead to terrible, unjust, consequences.
However, they came back an hour or so later anyway and brought with them weed brownies. Using marijuana to treat fibro had crossed my mind dozens of times before, but I wanted to use it as a last resort, given the risks of our current drug laws. Alas, being in such bad shape and with a chemistry test the next morning, I went for it.
The results were as follows:
-My anxiety level depleted
-My muscle spams stopped
-My involuntary movements decreased almost entirely
-My bizarre, itching and painful sensations were still present, but not nearly as intense
-It was the first night of the week I didn't vomit
-My nausea was gone and I ate for the first time that day, the fourth time total in 5 days
-It didn't take my pain away completely, but it brought it down more than it's been in months
-I fell fast asleep with no problem, and experienced a deep, restful nights sleep
My neighbors told me they only put in a tiny bit of weed in the brownies and I could tell it wasn't much. I wasn't too sure how it would affect me in my case and I was afraid it might even exasperate some of my symptoms. But I knew the chances were high (no pun intended) that it would at least take care of my nausea, so I thought, why not?
I experienced another week like this some time later, and my neighbors again came to my aid. Same results. I tried to ignore this as much as I could, but efforts were futile. I can't deny how much marijuana helped me.
I have never felt more strongly than I do now about medicinal marijuana. Marijuana alone, for me, can replace Lyrica, Tramadol, Hydrocodone, and Temazepam, all of which are hardly effective in the first place, produce unwanted side effects, are potentially dangerous and addictive, inconvenient to take and are outrageously expensive, even with insurance.
Marijuana, in turn, very effectively took care of the symptoms, produced minimal side effects, was much safer and not physiologically addictive, was cost effective, and took care of additional symptoms (my anxiety, muscle spasms, involuntary movements, and "sensations").
Wow. I really couldn't believe it. After the shock value subsided, I became livid that this substance is illegal for those who are sick and truly in need.
I spoke to my parents about this. I am not one for crying, especially in front of others. My family and friends have only ever seen me cry in cases of a loved one's passing since about the age of 10.
But as I explained my experience with cannabis, I felt my eyes begin to well up and I became teary eyed as I explained how it was the best I'd felt in months and how little pain I was in and how before I had really started to believe I would never feel that close to "normal" ever again. I was losing hope in what I saw as a losing battle, and was coming around to accepting living (more like tolerating) of a life of pain forever; but then I discovered the effects of this highly stigmatized plant, this glimmer of hope. It wasn't a cure, but it was a relief. This wasn't about "getting high" - this was about reclaiming my life.
My dad almost immediately offered to start growing.
I told them I'd done some research and found out more about Marinol, the THC drug. It's usually given to Chemo and HIV patients, but is sometimes used for those with chronic pain. I went through some fibro forums to see if anyone had tried Marinol and found only a handful, all of whom had successfully treated themselves illegally with marijuana prior to their Marinol prescription.
I asked if Marinol was just as effective as marijuana, and they either said yes, or something along the lines of "just about."
So now I'm on a mission to receive a prescription for Marinol to see how it works. My next appointment with my Rheumatologist is in a few weeks. I don't want to get my hopes up, but if he's on board and it does work, I can finally throw all of these stupid, ineffective, and expensive pills away and replace them with just one.
If not, my family and I have some difficult decisions to make. Fingers crossed.
I realize this issue may be controversial for some, but it's something I can't ignore at this point.
I don't want to get into any sort of political debate about this, at least not on here, as it's not my intention. But I am, and always have been, an advocate for medical marijuana. In high school, we found out my mom had MS. My parents sat us down and we had a family discussion about what MS was, what to expect, what course of action we would take, ect... This is when my dad made a powerful statement.
He told us that if my mom's condition worsened, or if any of us ever developed some sort of medical need, that he would grow marijuana himself if it would help us.
Some people may see that statement as defiant and a blatant disregard for the law; I saw it as one of the most moving things anyone has ever said to me.
We all know what fate users, growers and dealers suffer if they are caught. Sure, a lot of them are criminals in other ways, and I could argue against the current drug laws until I'm blue in the face, but that isn't the point. There are many good people, who are otherwise ordinary, law abiding citizens who are imprisoned every year for partaking in marijuana use, whether for medical reasons or not. We waste our tax dollars on overpopulating our prisons with these "criminals" guilty of victimless crimes as though they deserve to have their rights stripped away from them and be treated as a threat to society, instead of utilizing our energy, money, and resources to bring actual criminals - like thieves, murders and rapists - to justice. And even more disturbing, we do all of this instead of helping those truly in need of the medical benefits marijuana can offer.
/rant
I digress. What my dad said was a great testament to his willingness to make a huge and courageous sacrifice - of his life, liberty, property, and happiness - for his family if such an unfortunate circumstance required.
I always remembered that. I thought by now such a process would start, as my mother's MS should have progressed. But luckily, it hasn't, which leads us to believe her MS is benign. Thank goodness for that, I'd be totally lost without that crazy woman.
But now, my father finds himself with a daughter with 4 incurable diseases, loads of syndromes (associated with fibro), and no spleen.
And after failed treatment after failed treatment, I'm becoming discouraged. Normally, I wouldn't try any of these hard prescription drugs. I honestly just don't feel comfortable with them, for many reasons. But I'll do almost anything to get me through this semester so I can graduate.
One week in particular, I was doing horribly. No sleep, tons of pain, no appetite due to nausea, ect... I went to bed at 7 after a couple of nights, since I knew it would be hours before I could actually fall asleep. My neighbors came over and asked my roommate why I was in bed so earlier. She told them what had been going on and the next day they dropped by again just to check on how I was feeling, which was just as horrid as the previous few days.
That's when they offered to let me smoke some of their bud. Considering my breathing issues, I declined.
While I am and always have been 100% behind medicinal marijuana, I still feel uncomfortable breaking the law, not because I'm committing a "crime" but because getting caught would lead to terrible, unjust, consequences.
However, they came back an hour or so later anyway and brought with them weed brownies. Using marijuana to treat fibro had crossed my mind dozens of times before, but I wanted to use it as a last resort, given the risks of our current drug laws. Alas, being in such bad shape and with a chemistry test the next morning, I went for it.
The results were as follows:
-My anxiety level depleted
-My muscle spams stopped
-My involuntary movements decreased almost entirely
-My bizarre, itching and painful sensations were still present, but not nearly as intense
-It was the first night of the week I didn't vomit
-My nausea was gone and I ate for the first time that day, the fourth time total in 5 days
-It didn't take my pain away completely, but it brought it down more than it's been in months
-I fell fast asleep with no problem, and experienced a deep, restful nights sleep
My neighbors told me they only put in a tiny bit of weed in the brownies and I could tell it wasn't much. I wasn't too sure how it would affect me in my case and I was afraid it might even exasperate some of my symptoms. But I knew the chances were high (no pun intended) that it would at least take care of my nausea, so I thought, why not?
I experienced another week like this some time later, and my neighbors again came to my aid. Same results. I tried to ignore this as much as I could, but efforts were futile. I can't deny how much marijuana helped me.
I have never felt more strongly than I do now about medicinal marijuana. Marijuana alone, for me, can replace Lyrica, Tramadol, Hydrocodone, and Temazepam, all of which are hardly effective in the first place, produce unwanted side effects, are potentially dangerous and addictive, inconvenient to take and are outrageously expensive, even with insurance.
Marijuana, in turn, very effectively took care of the symptoms, produced minimal side effects, was much safer and not physiologically addictive, was cost effective, and took care of additional symptoms (my anxiety, muscle spasms, involuntary movements, and "sensations").
Wow. I really couldn't believe it. After the shock value subsided, I became livid that this substance is illegal for those who are sick and truly in need.
I spoke to my parents about this. I am not one for crying, especially in front of others. My family and friends have only ever seen me cry in cases of a loved one's passing since about the age of 10.
But as I explained my experience with cannabis, I felt my eyes begin to well up and I became teary eyed as I explained how it was the best I'd felt in months and how little pain I was in and how before I had really started to believe I would never feel that close to "normal" ever again. I was losing hope in what I saw as a losing battle, and was coming around to accepting living (more like tolerating) of a life of pain forever; but then I discovered the effects of this highly stigmatized plant, this glimmer of hope. It wasn't a cure, but it was a relief. This wasn't about "getting high" - this was about reclaiming my life.
My dad almost immediately offered to start growing.
I told them I'd done some research and found out more about Marinol, the THC drug. It's usually given to Chemo and HIV patients, but is sometimes used for those with chronic pain. I went through some fibro forums to see if anyone had tried Marinol and found only a handful, all of whom had successfully treated themselves illegally with marijuana prior to their Marinol prescription.
I asked if Marinol was just as effective as marijuana, and they either said yes, or something along the lines of "just about."
So now I'm on a mission to receive a prescription for Marinol to see how it works. My next appointment with my Rheumatologist is in a few weeks. I don't want to get my hopes up, but if he's on board and it does work, I can finally throw all of these stupid, ineffective, and expensive pills away and replace them with just one.
If not, my family and I have some difficult decisions to make. Fingers crossed.
Wednesday, March 21, 2012
O Sleep, Where Art Thou?
I've never been one for going to sleep.
The only time I ever desired sleep was when it was time to wake up. In college, I became determined to sleep as little as possible. I felt it to be an enormous waste of time. It pained me to think of all of the adventures I could be having and all of the information I could be learning during the hours which were reserved for slumber.
My freshman year, I did pretty well with no sleep. Having 4 or more hours of sleep a day was a rare occurrence. I pulled a lot of all nighters, for no particular reason. I attend a small, private university, and often times I'd be up during the night by myself, as everyone else slept. 2-3 hours was probably my daily average for sleep. And that seemed to be all I needed, too. I was never tired or low on energy - boy, do those days seem like lifetime ago.
By sophomore year I began sleeping about 4-5 hours a night, and that went on through most of my junior year, as well. Toward the end of my junior year though, I began to feel more tired and fatigued. I would try to sleep and instead end up lying in bed, eyes closed, for anywhere from 1-6 hours before finally falling asleep, and by then, it'd usually be time to wake up for class (worst feeling ever).
I began to notice other changes, as well. The pain in my hips and wrists seemed to be greatly interfering with my getting comfortable enough to sleep. And as someone who had always had the capacity to sleep no matter what the lighting or noise, I suddenly became completely intolerant to such external stimuli. There were many different times in my life where I actually couldn't achieve sleep without the TV on. But suddenly, the TV absolutely had to be off, or else I would never get to sleep. I also begrudgingly started wearing an eye mask to bed, since even the tiniest bit of moonlight would keep me awake.
When I finally would fall asleep, I'd usually wake up in the middle of the night drenched in sweat and completely uncomfortable. Sleep had always come easy to me in a lot of ways. For instance, I never understood why some people couldn't get back to sleep after waking up. It had never been an issue for me. But all of the sudden, it was a huge problem. I was also quite known for how peaceful I was when I slept, making no noises or movements. But suddenly I began experiencing attacks of weird sensations while I slept that caused me to move about throughout the night. Sleep starts also became a frequent occurrence.
Since being diagnosed with Fibromyalgia, my sleeping patterns are all over the place. Sometimes I sleep too much, other times I can't seem to sleep at all. I once went three weeks sleeping 14 hours a night plus taking one or two naps during the day. I would sleep for 14 hours straight, wake up, shower, eat, go back to bed, wake up, eat, watch some tv or read, go back to sleep, wake up, watch some more tv or read, then go to bed for the night. Spring break was a lot like this, but I had a more waking hours.
Then I return back to school and the situation is the exact opposite. Sunday night I went to bed around 1, but I didn't actually fall asleep until a little after 4. On Monday night I went to bed around 2 and did get to sleep until around 6. I ended up skipping my classes for the day because I was so exhausted. I tried to take a nap instead around 2 p.m., but didn't fall asleep until about 4, and woke up shortly before 5.
And then last night.
Last night I went to bed around 1, but didn't really start trying to sleep until 2. I did not get to sleep until 8 in the morning. To top it all off, I woke up an hour later and was positively unable to fall back to sleep.
To make things more interesting, I had my Major Field Exam today which I had to take with only having a measly total of 8 hours of sleep from the past 3 days. I'm not sure how I did, but now I have to turn my attention to my senior thesis paper I need to write by Friday. Ugh, ugh, ugh!
My body is killing me in every way possible right now.
For the record, I am also taking sleeping pills. I take melatonin, magnesium and zinc right before bed, and if that doesn't get me to sleep, I take Temazepam (which I have taken the past several nights). I used to take Ambien which really worked for me, but before I even finished the first bottle, it suddenly stopped working. So my doctor switched me to Temazepam, which also worked splendidly before suddenly stopping, again, before I even finished the first bottle.
Does anyone else seem to build tolerance like this to sleeping pills?
Oh well. I can do this. Sleep is for the weak ;)
The only time I ever desired sleep was when it was time to wake up. In college, I became determined to sleep as little as possible. I felt it to be an enormous waste of time. It pained me to think of all of the adventures I could be having and all of the information I could be learning during the hours which were reserved for slumber.
My freshman year, I did pretty well with no sleep. Having 4 or more hours of sleep a day was a rare occurrence. I pulled a lot of all nighters, for no particular reason. I attend a small, private university, and often times I'd be up during the night by myself, as everyone else slept. 2-3 hours was probably my daily average for sleep. And that seemed to be all I needed, too. I was never tired or low on energy - boy, do those days seem like lifetime ago.
By sophomore year I began sleeping about 4-5 hours a night, and that went on through most of my junior year, as well. Toward the end of my junior year though, I began to feel more tired and fatigued. I would try to sleep and instead end up lying in bed, eyes closed, for anywhere from 1-6 hours before finally falling asleep, and by then, it'd usually be time to wake up for class (worst feeling ever).
I began to notice other changes, as well. The pain in my hips and wrists seemed to be greatly interfering with my getting comfortable enough to sleep. And as someone who had always had the capacity to sleep no matter what the lighting or noise, I suddenly became completely intolerant to such external stimuli. There were many different times in my life where I actually couldn't achieve sleep without the TV on. But suddenly, the TV absolutely had to be off, or else I would never get to sleep. I also begrudgingly started wearing an eye mask to bed, since even the tiniest bit of moonlight would keep me awake.
When I finally would fall asleep, I'd usually wake up in the middle of the night drenched in sweat and completely uncomfortable. Sleep had always come easy to me in a lot of ways. For instance, I never understood why some people couldn't get back to sleep after waking up. It had never been an issue for me. But all of the sudden, it was a huge problem. I was also quite known for how peaceful I was when I slept, making no noises or movements. But suddenly I began experiencing attacks of weird sensations while I slept that caused me to move about throughout the night. Sleep starts also became a frequent occurrence.
Since being diagnosed with Fibromyalgia, my sleeping patterns are all over the place. Sometimes I sleep too much, other times I can't seem to sleep at all. I once went three weeks sleeping 14 hours a night plus taking one or two naps during the day. I would sleep for 14 hours straight, wake up, shower, eat, go back to bed, wake up, eat, watch some tv or read, go back to sleep, wake up, watch some more tv or read, then go to bed for the night. Spring break was a lot like this, but I had a more waking hours.
Then I return back to school and the situation is the exact opposite. Sunday night I went to bed around 1, but I didn't actually fall asleep until a little after 4. On Monday night I went to bed around 2 and did get to sleep until around 6. I ended up skipping my classes for the day because I was so exhausted. I tried to take a nap instead around 2 p.m., but didn't fall asleep until about 4, and woke up shortly before 5.
And then last night.
Last night I went to bed around 1, but didn't really start trying to sleep until 2. I did not get to sleep until 8 in the morning. To top it all off, I woke up an hour later and was positively unable to fall back to sleep.
To make things more interesting, I had my Major Field Exam today which I had to take with only having a measly total of 8 hours of sleep from the past 3 days. I'm not sure how I did, but now I have to turn my attention to my senior thesis paper I need to write by Friday. Ugh, ugh, ugh!
My body is killing me in every way possible right now.
For the record, I am also taking sleeping pills. I take melatonin, magnesium and zinc right before bed, and if that doesn't get me to sleep, I take Temazepam (which I have taken the past several nights). I used to take Ambien which really worked for me, but before I even finished the first bottle, it suddenly stopped working. So my doctor switched me to Temazepam, which also worked splendidly before suddenly stopping, again, before I even finished the first bottle.
Does anyone else seem to build tolerance like this to sleeping pills?
Oh well. I can do this. Sleep is for the weak ;)
Monday, March 19, 2012
Spring Break with My Friend, Fibromyalgia.
So I haven't posted lately because I've been on Spring Break.
And like most college seniors on spring break, I partied on the beach with my friends and drank until the sun came up.
No, no I didn't. I didn't go to the beach as so many of my peers did. I did not go on any road trips to exciting places like California or New York or Florida. I did not go to parties, or hang out at clubs or bars. I did not even visit but one friend, and technically, she visited me. I didn't do any of those normal things which college seniors on spring break do because I have fibromyalgia. I spent the vast amount of my spring break in bed - and that's not a complaint.
While I do point out the difference between my life and the life of my peers, it is not a complaint. My spring break was quite lovely. I enjoyed it. And while I can't bring back any crazy and awesome memories from my break as I'd like to, I was content with catching up on sleep and letting my body heal, even just a little bit.
Of course, it wasn't all fun. Unfortunately, we started the grueling process of getting our roof done, which went on for 6 days straight and still isn't finished. This means that from 8 in the morning to 12 or 4 (depending on the weather) in the afternoon, there was loud banging and lots of talking from the workers. For someone with Fibromyalgia who experiences the symptoms of sensory overload, this can be a problem.
And for me, personally, one of my most dangerous symptoms is the hearing hypersensitivity. My experience with this auditory sensory overload has often lead to muscle twitching, muscle jerking, muscle spasms, tremors, nausea, headaches, increased pain and fatigue, blurry vision, unrelenting anxiety, and various speech impediments. As all of this builds up, it eventually leads to syncope (fainting) and seizures.
So, as you can imagine, while the workers were there, I was in pretty bad shape, experiencing a handful of episodes a day. My parents would move me from one side of the house to the other to keep me away from the noise as much as possible. I had to be escorted any time I walked, so I mostly just stayed in bed, as my brother would graciously keep me company by delving deep into philosophical conversations about any and everything.
Ah, but once the workers finished up for the day, I was at total peace. I may have been fatigued and in pain and with a migraine or headache, but I was still at peace. I was going to bed at 7 p.m. and sleeping for 14 hours. I even took the occasional nap or two during the day when I could manage.
No, it wasn't much. I have no stories to tell my friends of how crazy of a time I had, and I have no stories to pass down to my future offspring about how young and reckless I was, but I still enjoyed it.
Obviously, there is frustration involved in being a 20 year old college senior unable to partake in normal college activities, but at the end of the day, I'm just grateful to be going through this ongoing battle at home with my family and friends, above all else. You see, I know what it's like to be young and fighting for your life in a hospital with no parents, no family, no friends. And while I'd certainly rather be a normal and healthy 20 year old girl, I can still appreciate these small things which are often taken for granted.
My mom was dead set on having me spend my spring break in my best friend's condo, who wasn't doing much of anything herself because she was attending a lab over spring break for extra credit. My mother insisted on sending me there to keep me from the pain of the noise. But no matter how annoying and frustrating the noise was, and no matter how much I love my best friend, the only place I wanted to be was home, with my mom and dad, and my brother and dogs.
And I did just that :)
Hm. Fibromyalgia seems to have an awfully weird way of keeping me grounded.
And like most college seniors on spring break, I partied on the beach with my friends and drank until the sun came up.
No, no I didn't. I didn't go to the beach as so many of my peers did. I did not go on any road trips to exciting places like California or New York or Florida. I did not go to parties, or hang out at clubs or bars. I did not even visit but one friend, and technically, she visited me. I didn't do any of those normal things which college seniors on spring break do because I have fibromyalgia. I spent the vast amount of my spring break in bed - and that's not a complaint.
While I do point out the difference between my life and the life of my peers, it is not a complaint. My spring break was quite lovely. I enjoyed it. And while I can't bring back any crazy and awesome memories from my break as I'd like to, I was content with catching up on sleep and letting my body heal, even just a little bit.
Of course, it wasn't all fun. Unfortunately, we started the grueling process of getting our roof done, which went on for 6 days straight and still isn't finished. This means that from 8 in the morning to 12 or 4 (depending on the weather) in the afternoon, there was loud banging and lots of talking from the workers. For someone with Fibromyalgia who experiences the symptoms of sensory overload, this can be a problem.
And for me, personally, one of my most dangerous symptoms is the hearing hypersensitivity. My experience with this auditory sensory overload has often lead to muscle twitching, muscle jerking, muscle spasms, tremors, nausea, headaches, increased pain and fatigue, blurry vision, unrelenting anxiety, and various speech impediments. As all of this builds up, it eventually leads to syncope (fainting) and seizures.
So, as you can imagine, while the workers were there, I was in pretty bad shape, experiencing a handful of episodes a day. My parents would move me from one side of the house to the other to keep me away from the noise as much as possible. I had to be escorted any time I walked, so I mostly just stayed in bed, as my brother would graciously keep me company by delving deep into philosophical conversations about any and everything.
Ah, but once the workers finished up for the day, I was at total peace. I may have been fatigued and in pain and with a migraine or headache, but I was still at peace. I was going to bed at 7 p.m. and sleeping for 14 hours. I even took the occasional nap or two during the day when I could manage.
No, it wasn't much. I have no stories to tell my friends of how crazy of a time I had, and I have no stories to pass down to my future offspring about how young and reckless I was, but I still enjoyed it.
Obviously, there is frustration involved in being a 20 year old college senior unable to partake in normal college activities, but at the end of the day, I'm just grateful to be going through this ongoing battle at home with my family and friends, above all else. You see, I know what it's like to be young and fighting for your life in a hospital with no parents, no family, no friends. And while I'd certainly rather be a normal and healthy 20 year old girl, I can still appreciate these small things which are often taken for granted.
My mom was dead set on having me spend my spring break in my best friend's condo, who wasn't doing much of anything herself because she was attending a lab over spring break for extra credit. My mother insisted on sending me there to keep me from the pain of the noise. But no matter how annoying and frustrating the noise was, and no matter how much I love my best friend, the only place I wanted to be was home, with my mom and dad, and my brother and dogs.
And I did just that :)
Hm. Fibromyalgia seems to have an awfully weird way of keeping me grounded.
Tuesday, March 6, 2012
Lyme Disease.
I find it extremely unnerving that the Fibromyalgia community does very little in spreading awareness about Lyme Disease.
Lyme Disease is a bacterial infection spread via tick bite. Since Fibromyalgia is primarily diagnosed on the basis of exclusion, this makes Lyme Disease the single most important diagnosis to rule out. Why? Well let's start by checking out some of the symptoms of Late Stage/Chronic Lyme Disease:
-Severe Fatigue
-Rashes
-Hair Loss
-Headaches
-Malaise
-Muscle Twitching
-Facial Paralysis (Bell's Palsy)
-Tingling, Itching, Crawling Sensations (RLS)
-Numbness
-Burning or Stabbing Sensations
-Stiffness
-Jaw Pain or Stiffness (TMJ)
-Double or Blurry Vision
-Tinnitus
-Abnormal Sensitivity to light, sounds, smell, and taste (sensory overload)
-Diarrhea
-Constipation
-Irritable Bladder
-Nausea
-Abdominal Pain
-Joint Pain or Swelling
-Muscle Pain
-Shortness of Breath
-Chest Pain/Pressure
-Night Sweats
-Chills
-Heart Palpitations
-Tremors
-Seizures
-Faintness/light headedness
-Dizziness
-Poor Balance
-Mood Swings
-Depression
-Anxiety
-Sleeping Difficulties
-Cognitive and Memory Dysfunction
-Loss of Sex Drive
-Dysmenorrhoea (painful menstruation)
-Unexplained Weight Changes (loss, usually gain)
-Chemical Sensitivities
-Increased Intolerance to Alcohol
Hopefully you noticed that essentially all of these symptoms overlap with that of Fibromyalgia. Some key differences: Bulls-eye rash at the site of the bite and Bell's palsy. Neither of these two symptoms are found in those with Fibromyalgia.
And sure, Fibromyalgia shares overlapping symptoms with a vast amount of other diseases and illnesses, but none are quite as similar as Lyme Disease. There's no denying it: the symptoms of Fibromyalgia and Lyme Disease are virtually identical - eerily so.
But don't assume that because you've never seen a tick on you, nor a bullseye rash, that you're in the clear. Don't even assume that if you've tested negative that you're in the clear. Many people with Lyme Disease (or "Lymies" as they refer to themselves) never saw a tick and never saw or noticed a bullseye rash. This makes Lyme Disease almost as difficult to diagnose as Fibromyalgia.
Two of the most common tests used for detecting Lyme are the ELISA and the Western Blot test. These tests tend to be extremely inaccurate (I've seen rates listed anywhere from 30% to 66% accuracy) and can produce both false negatives and false positives, though the former is a more common occurrence. Should you receive these tests, it's imperative to have them sent to a Lyme literate lab, which there are only a few in the country. They are the best and most accurate at reading results.
Lyme literate doctors or nurses (LLMD/LLMN) are also far and few, but if one is within your area, I would suggest you see them as well. In the event that you test positively for Lyme Disease, it is absolutely paramount to seek out an LLMD or LLMN.
Lyme Disease is just as controversial and complicated as Fibromyalgia. Chronic/Late Stage Lyme Disease is often questioned as to whether or not it exists, but most controversial is the treatment of Chronic Lyme, as it is treated with long-term antibiotics. That's right, unlike Fibromyalgia, there IS a cure for Lyme Disease!
Though the fatality rate of Lyme Disease is very low and death is actually extremely rare, it is still a very real possibility in the event that Lyme Disease is left untreated. Fatality generally occurs when the disease spreads to the heart. If the possibility of having a cure for your illness isn't enough motivation to go get tested, perhaps this risk of death will be.
Fibro and Lyme are so similar that they are very often misdiagnosed as the other. And although passionate Lymies (which appear to be very common) will most likely tell you that only Lyme is misdiagnosed for Fibromyalgia, this is incorrect.
In fact, I have a family friend who was diagnosed with Chronic Lyme after a false positive and sought out long term antibiotic treatment, which began wreak havoc her body. After nearly two years, she began to reevaluate her diagnosis and after continually receiving negative test results and her condition remaining the same, she was then diagnosed with Fibromyalgia, for which medications seem to be improving her condition.
I'd be surprised if anyone familiar to hanging out in a Fibro forum hasn't seen an infiltration by a Lymie, many of whom believe fibro doesn't exist and is truly Lyme, or simply that fibro is a symptom of Lyme (personally, I do believe Fibro is the major symptom of Lyme, but I also believe the syndrome exists independently of a Lyme infection). Lymies can sometimes be very hardcore and passionate, and unfortunately their hysterics do more harm to their cause than good.
But don't let their headstrong, sometimes irrational, approach take away from their message. Lyme Disease is a very real possibility for those who have been diagnosed with Fibromyalgia, and if Fibro patients have been lucky enough to have a doctor actually test them, it's extremely likely they were not properly tested, as doctors are even more uneducated about Lyme than they are Fibro.
Some Lymies may think Lyme Disease is the root of all problems (many are firm believers that Parkinson's, MS, Lupus, Fibromyalgia, Alzheimer's, and even ALS are all actually Lyme Disease in different stages), but their message of awareness is still very important, especially to those with Fibromyalgia.
There's no denying the incredible similarity between these two illnesses, and there are theories that they are closely related in one way or another, but it is my belief that the Fibro community and the Lyme community teaming up would lead to great things, much like how the Fibro community often teams up with the Chronic Fatigue community. Both Lyme and Fibro are in dire need of awareness, and it is my belief that we could only benefit by supporting one another. Both conditions are mostly a mystery to the medical community, the existence of either is highly controversial, testing for both is unreliable, it is highly probable that a link between the two exists, and at the end of the day, we're both having trouble going to sleep with all of our aches and pains. Because we are experiencing the same symptoms and similar medical and social obstacles, we have the amazing potential to understand one another and unite for a greater cause.
Unfortunately, the Lyme Community is overall resistant and unwelcoming toward the Fibromyalgia community and I don't see cooperation happening any time soon. If you thought Fibrobots were defensive, wait until you see a Lymie. They are often times set in their ways that Fibromyalgia is actually Lyme Disease. Again, a link between the two is actually very plausible, but we'll never know unless we push for more research for these illnesses both together to find any possible connections, and individually.
It breaks my heart knowing what good we could do by bringing these two communities together, and yet missing out on ever having the chance to do so.
If you've been diagnosed with Fibromyalgia, I strongly urge you to educate yourself on Chronic Lyme Disease and have yourself properly tested, perhaps multiple times. Please feel free to contact me for more information on what labs to have results sent to and what LLMD's or LLND's may be in your area.
All in all, regardless if the Lymies aren't willing to help Fibrobots (or vice versa), I am personally willing to help spread awareness about Lyme Disease, as I believe both Fibromyalgia and Lyme Disease do indeed exist. I can't express how much I wish the Fibromyalgia community would try to do the same.
I'll close with a question: How many of your doctors tested you for Lyme Disease? Did they speak with you about Lyme Disease as a possibility before diagnosing you with Fibromyalgia?
I was delightfully surprised to have every one of my doctors inquire about a tick bite before ever breathing the words "Fibromyalgia."
Lyme Disease is a bacterial infection spread via tick bite. Since Fibromyalgia is primarily diagnosed on the basis of exclusion, this makes Lyme Disease the single most important diagnosis to rule out. Why? Well let's start by checking out some of the symptoms of Late Stage/Chronic Lyme Disease:
-Severe Fatigue
-Rashes
-Hair Loss
-Headaches
-Malaise
-Muscle Twitching
-Facial Paralysis (Bell's Palsy)
-Tingling, Itching, Crawling Sensations (RLS)
-Numbness
-Burning or Stabbing Sensations
-Stiffness
-Jaw Pain or Stiffness (TMJ)
-Double or Blurry Vision
-Tinnitus
-Abnormal Sensitivity to light, sounds, smell, and taste (sensory overload)
-Diarrhea
-Constipation
-Irritable Bladder
-Nausea
-Abdominal Pain
-Joint Pain or Swelling
-Muscle Pain
-Shortness of Breath
-Chest Pain/Pressure
-Night Sweats
-Chills
-Heart Palpitations
-Tremors
-Seizures
-Faintness/light headedness
-Dizziness
-Poor Balance
-Mood Swings
-Depression
-Anxiety
-Sleeping Difficulties
-Cognitive and Memory Dysfunction
-Loss of Sex Drive
-Dysmenorrhoea (painful menstruation)
-Unexplained Weight Changes (loss, usually gain)
-Chemical Sensitivities
-Increased Intolerance to Alcohol
Hopefully you noticed that essentially all of these symptoms overlap with that of Fibromyalgia. Some key differences: Bulls-eye rash at the site of the bite and Bell's palsy. Neither of these two symptoms are found in those with Fibromyalgia.
And sure, Fibromyalgia shares overlapping symptoms with a vast amount of other diseases and illnesses, but none are quite as similar as Lyme Disease. There's no denying it: the symptoms of Fibromyalgia and Lyme Disease are virtually identical - eerily so.
But don't assume that because you've never seen a tick on you, nor a bullseye rash, that you're in the clear. Don't even assume that if you've tested negative that you're in the clear. Many people with Lyme Disease (or "Lymies" as they refer to themselves) never saw a tick and never saw or noticed a bullseye rash. This makes Lyme Disease almost as difficult to diagnose as Fibromyalgia.
Two of the most common tests used for detecting Lyme are the ELISA and the Western Blot test. These tests tend to be extremely inaccurate (I've seen rates listed anywhere from 30% to 66% accuracy) and can produce both false negatives and false positives, though the former is a more common occurrence. Should you receive these tests, it's imperative to have them sent to a Lyme literate lab, which there are only a few in the country. They are the best and most accurate at reading results.
Lyme literate doctors or nurses (LLMD/LLMN) are also far and few, but if one is within your area, I would suggest you see them as well. In the event that you test positively for Lyme Disease, it is absolutely paramount to seek out an LLMD or LLMN.
Lyme Disease is just as controversial and complicated as Fibromyalgia. Chronic/Late Stage Lyme Disease is often questioned as to whether or not it exists, but most controversial is the treatment of Chronic Lyme, as it is treated with long-term antibiotics. That's right, unlike Fibromyalgia, there IS a cure for Lyme Disease!
Though the fatality rate of Lyme Disease is very low and death is actually extremely rare, it is still a very real possibility in the event that Lyme Disease is left untreated. Fatality generally occurs when the disease spreads to the heart. If the possibility of having a cure for your illness isn't enough motivation to go get tested, perhaps this risk of death will be.
Fibro and Lyme are so similar that they are very often misdiagnosed as the other. And although passionate Lymies (which appear to be very common) will most likely tell you that only Lyme is misdiagnosed for Fibromyalgia, this is incorrect.
In fact, I have a family friend who was diagnosed with Chronic Lyme after a false positive and sought out long term antibiotic treatment, which began wreak havoc her body. After nearly two years, she began to reevaluate her diagnosis and after continually receiving negative test results and her condition remaining the same, she was then diagnosed with Fibromyalgia, for which medications seem to be improving her condition.
I'd be surprised if anyone familiar to hanging out in a Fibro forum hasn't seen an infiltration by a Lymie, many of whom believe fibro doesn't exist and is truly Lyme, or simply that fibro is a symptom of Lyme (personally, I do believe Fibro is the major symptom of Lyme, but I also believe the syndrome exists independently of a Lyme infection). Lymies can sometimes be very hardcore and passionate, and unfortunately their hysterics do more harm to their cause than good.
But don't let their headstrong, sometimes irrational, approach take away from their message. Lyme Disease is a very real possibility for those who have been diagnosed with Fibromyalgia, and if Fibro patients have been lucky enough to have a doctor actually test them, it's extremely likely they were not properly tested, as doctors are even more uneducated about Lyme than they are Fibro.
Some Lymies may think Lyme Disease is the root of all problems (many are firm believers that Parkinson's, MS, Lupus, Fibromyalgia, Alzheimer's, and even ALS are all actually Lyme Disease in different stages), but their message of awareness is still very important, especially to those with Fibromyalgia.
There's no denying the incredible similarity between these two illnesses, and there are theories that they are closely related in one way or another, but it is my belief that the Fibro community and the Lyme community teaming up would lead to great things, much like how the Fibro community often teams up with the Chronic Fatigue community. Both Lyme and Fibro are in dire need of awareness, and it is my belief that we could only benefit by supporting one another. Both conditions are mostly a mystery to the medical community, the existence of either is highly controversial, testing for both is unreliable, it is highly probable that a link between the two exists, and at the end of the day, we're both having trouble going to sleep with all of our aches and pains. Because we are experiencing the same symptoms and similar medical and social obstacles, we have the amazing potential to understand one another and unite for a greater cause.
Unfortunately, the Lyme Community is overall resistant and unwelcoming toward the Fibromyalgia community and I don't see cooperation happening any time soon. If you thought Fibrobots were defensive, wait until you see a Lymie. They are often times set in their ways that Fibromyalgia is actually Lyme Disease. Again, a link between the two is actually very plausible, but we'll never know unless we push for more research for these illnesses both together to find any possible connections, and individually.
It breaks my heart knowing what good we could do by bringing these two communities together, and yet missing out on ever having the chance to do so.
If you've been diagnosed with Fibromyalgia, I strongly urge you to educate yourself on Chronic Lyme Disease and have yourself properly tested, perhaps multiple times. Please feel free to contact me for more information on what labs to have results sent to and what LLMD's or LLND's may be in your area.
All in all, regardless if the Lymies aren't willing to help Fibrobots (or vice versa), I am personally willing to help spread awareness about Lyme Disease, as I believe both Fibromyalgia and Lyme Disease do indeed exist. I can't express how much I wish the Fibromyalgia community would try to do the same.
I'll close with a question: How many of your doctors tested you for Lyme Disease? Did they speak with you about Lyme Disease as a possibility before diagnosing you with Fibromyalgia?
I was delightfully surprised to have every one of my doctors inquire about a tick bite before ever breathing the words "Fibromyalgia."
Monday, March 5, 2012
Lyrica Commercials
Another quick post.
Is it just me, or is the Lyrica commercial one of the most annoying things ever?
On one hand, I'm thankful for it because it at least familiarizes people with the term "fibromyalgia." In fact, I wouldn't have ever heard of Fibromyalgia without it. (Bit of a fallacy. I suppose it would be more proper to say I likely would not have heard of Fibromyalgia before the point of my diagnoses without it.)
On the other hand, it annoys me twofold:
First, I believe the only symptom mentioned is (muscle) pain, at least in the current commercial. I obviously do not expect them to take the time to list all of the symptoms, but because of this commercial, I have run into a good few people who are under the impression that Fibromyalgia is just "soreness" or "achiness" a la "the commercial on TV."
Commercials can only go over so much information at one time, though, right? Sure, but I still think there are things they could improve in order to be more accurate.
For instance, hypothetically speaking I would personally change the commercial to have the woman lying in bed looking as people with Fibromyalgia often feel - I want her to look similar to how people in flu commercials look, damn it! Not up and moving and then suddenly rubbing her shoulder blade with a squinched up face! Sheesh. She must have extremely mild Fibro.
I also wish there was more emphasis on the type of pain. You know, more descriptive words like radiating, debilitating, unrelenting. Perhaps a mention of how it includes other widespread and bizarre symptoms.
Secondly, the commercial leaves the impression that after taking Lyrica, Miss Fibro is all better to go out in the sun (with no sunglasses since her light sensitivity is now remedied), with her hair pulled back in a bun (since Lyrica is an antidote for the pain and headaches hair bands cause), and is fresh faced (since chronic fatigue has met it's maker!) and ready to tackle another day at work (presuming her fibro wasn't severe enough to put her job in jeopardy)! Ladies and gentlemen, it's a new superhero, FIBRO WOMAN.
Okay, okay, I'm not ignorant, I get it. They are trying to sell a product and it's their job to make it sound like it's a cure for fibro, cancer, and world hunger, and a downright gift from God himself. I get it. But it's just so misleading and inaccurate. I've yet to meet someone on Lyrica or any other single medication whose pain and other symptoms simply vanished. And if that were the case, I'd be hard pressed not to question if they were diagnosed correctly.
I'm currently on Lyrica, and it's helped. By helped, I mean it's taken my pain from a 9 or 8 to a 7, or a 6 on a good day. And that's in combination with tramadol, a sleeping pill, some medication generally used for Parkinson's, and who knows what other prescriptions (I try to take as few as possible). It's also in combination with the 23987429387 brazillion supplements I take, my physical therapy, my healthy(ish) diet, and my overall positive attitude. All of that money for my pain to drop by a point or two. Sigh.
I was once sitting in a room with my Resident Advisor who was aware of my fibromyalgia when the Lyrica commercial came on. "Have you tried that?" she asked, with a look of eagerness to help (after all, she had just discovered that Lyrica practically brings about world peace). I told her I was currently taking it.
"Does it help?"
I begrudgingly responded with my Likert pain scale.
"Well how long have you been taking it? It probably just hasn't had time to take full effect yet. I'm sure if you give it time you'll be back to normal in a few weeks!"
/headdesk
/facepalm
smh
Whatever internet expression of frustration and disappointment you prefer.
No, Anne, Lyrica is not the source of rainbows and butterflies. It will not ensure every fluffy puppy goes to bed with shelter and food tonight, it is not the answer to the inevitable and impending zombie apocalypse, and it is not a cure for Fibrolmyalgia - primarily because, at present, there is no cure.
To be clear, I actually love my RA (not to be confused with my RA doctor!). She's the sweetest, most genuine person ever who is actually very bright. But she also happened to be involved in a big reason why I hate this commercial. :)
Like most things in life, I wish fibromyalgia was as easy as it is on TV. Where's my hardhat and blue prints? :(
Alright, roommate is back and we have our senior seminar presentation to put together. Positive thoughts to anyone going through a particularly rough time right now, and air hugs to all of those Fibrobots out there!
Toodles!
Is it just me, or is the Lyrica commercial one of the most annoying things ever?
On one hand, I'm thankful for it because it at least familiarizes people with the term "fibromyalgia." In fact, I wouldn't have ever heard of Fibromyalgia without it. (Bit of a fallacy. I suppose it would be more proper to say I likely would not have heard of Fibromyalgia before the point of my diagnoses without it.)
On the other hand, it annoys me twofold:
First, I believe the only symptom mentioned is (muscle) pain, at least in the current commercial. I obviously do not expect them to take the time to list all of the symptoms, but because of this commercial, I have run into a good few people who are under the impression that Fibromyalgia is just "soreness" or "achiness" a la "the commercial on TV."
Commercials can only go over so much information at one time, though, right? Sure, but I still think there are things they could improve in order to be more accurate.
For instance, hypothetically speaking I would personally change the commercial to have the woman lying in bed looking as people with Fibromyalgia often feel - I want her to look similar to how people in flu commercials look, damn it! Not up and moving and then suddenly rubbing her shoulder blade with a squinched up face! Sheesh. She must have extremely mild Fibro.
I also wish there was more emphasis on the type of pain. You know, more descriptive words like radiating, debilitating, unrelenting. Perhaps a mention of how it includes other widespread and bizarre symptoms.
Secondly, the commercial leaves the impression that after taking Lyrica, Miss Fibro is all better to go out in the sun (with no sunglasses since her light sensitivity is now remedied), with her hair pulled back in a bun (since Lyrica is an antidote for the pain and headaches hair bands cause), and is fresh faced (since chronic fatigue has met it's maker!) and ready to tackle another day at work (presuming her fibro wasn't severe enough to put her job in jeopardy)! Ladies and gentlemen, it's a new superhero, FIBRO WOMAN.
Okay, okay, I'm not ignorant, I get it. They are trying to sell a product and it's their job to make it sound like it's a cure for fibro, cancer, and world hunger, and a downright gift from God himself. I get it. But it's just so misleading and inaccurate. I've yet to meet someone on Lyrica or any other single medication whose pain and other symptoms simply vanished. And if that were the case, I'd be hard pressed not to question if they were diagnosed correctly.
I'm currently on Lyrica, and it's helped. By helped, I mean it's taken my pain from a 9 or 8 to a 7, or a 6 on a good day. And that's in combination with tramadol, a sleeping pill, some medication generally used for Parkinson's, and who knows what other prescriptions (I try to take as few as possible). It's also in combination with the 23987429387 brazillion supplements I take, my physical therapy, my healthy(ish) diet, and my overall positive attitude. All of that money for my pain to drop by a point or two. Sigh.
I was once sitting in a room with my Resident Advisor who was aware of my fibromyalgia when the Lyrica commercial came on. "Have you tried that?" she asked, with a look of eagerness to help (after all, she had just discovered that Lyrica practically brings about world peace). I told her I was currently taking it.
"Does it help?"
I begrudgingly responded with my Likert pain scale.
"Well how long have you been taking it? It probably just hasn't had time to take full effect yet. I'm sure if you give it time you'll be back to normal in a few weeks!"
/headdesk
/facepalm
smh
Whatever internet expression of frustration and disappointment you prefer.
No, Anne, Lyrica is not the source of rainbows and butterflies. It will not ensure every fluffy puppy goes to bed with shelter and food tonight, it is not the answer to the inevitable and impending zombie apocalypse, and it is not a cure for Fibrolmyalgia - primarily because, at present, there is no cure.
To be clear, I actually love my RA (not to be confused with my RA doctor!). She's the sweetest, most genuine person ever who is actually very bright. But she also happened to be involved in a big reason why I hate this commercial. :)
Like most things in life, I wish fibromyalgia was as easy as it is on TV. Where's my hardhat and blue prints? :(
Alright, roommate is back and we have our senior seminar presentation to put together. Positive thoughts to anyone going through a particularly rough time right now, and air hugs to all of those Fibrobots out there!
Toodles!
Generic Symptom Lists
I'm unsure as to how often I'll be writing this week, as it's Midterm week and I'm going to be putting forth all of my energy toward not stressing out too much so that a bad flare doesn't follow. Feeling a bit incoherent today, but here's a little something :)
I don't know if I'm alone in this, or perhaps due to my age and inexperience I simply previously had a very naive perspective in this regard, but I just don't care for generic lists explaining medical conditions.
When I was first told my diagnoses was "probable fibromyalgia," I, of course, went home and looked it up straight away. What I found was that many internet sources listed the following symptoms: widespread pain, fatigue, sleeping difficulties, and anxiety and/or depression. Some sites would specify in more detail what sort of pain, such as stiffness, joint pain, muscle pain, ect... Other sites would include additional symptoms such as headaches, irritable bowel syndrome, and concentration difficulty.
I remember thinking "Hm. Well, good, this seems manageable." At this point, I was still thinking medications would have me up and out of bed and feeling great again in no time! How wrong I was.
To reiterate, it was probably naive of me in failing to fully grasp the severity of the symptoms, but on paper, it just seemed so much easier and simpler than it actually turned out to be. Truth be told, I really did not think much of the diagnoses. At least not until things became worse, not better, even with medication.
Another grievance I have is how many symptoms are left out of those lists, such as dizziness, disequilibrium, muscle spams, twitches, jerks, tremors, and all of the various sensitivities. Just to name a few. Or that the symptoms of fibromyalgia have the ability to cause additional symptoms themselves.
For example, I, like many others with fibro, experience hypersensitivity to light, sound, and smell (some people also experience sensitivity to taste). This is something often not included in symptoms lists, and I thought I was going crazy when it began. Even more scarcely mentioned are the symptoms sensory overload may cause as a result. One such possible symptoms is syncope, or fainting, a symptom which I have grown to become quite familiar with.
Now, don't get me wrong - I know those generic symptoms are meant to be general and used as a brief overview of what certain medical conditions are like, or entail. I also understand that if you have a certain illness, it's your personal responsibility to educate yourself and do further research.
But let's be realistic here: if someone tells you they have a disease you don't know much about, you're probably going to go onto one of these sites and glance at this generic list, and unless something like paralysis or death is listed, you're likely not going to think much of it. My qualm is that when people do this upon learning I have fibromyalgia, while they think they now possess a greater understanding about what I'm going through, I know that they still have no idea.
What I've learned is that you don't really "get" the sufferings and daily obstacles an illness entails until you take the time to read or listen to those who suffer from it themselves. Sufferers tend to tell quite a different story than generic lists do.
Upon making this revelation, I found myself hanging out in forums of all sorts of illnesses I thought I previously understood. It was quite an eye opening and humbling experience, and I suggest you do the same, especially in the event that you meet someone with any sort of illness.
In depth, count-by-count explanations about "A Day in the Life" of someone with (insert illness here) is often such an enlightening experience, whether you can relate to it or not (which probably explains the success and popularity of The Spoon Theory). Even articles attempting to explain the effects of these symptoms can't begin to suffice compared to a raw explanation from a sufferer.
In the end, "widespread pain" doesn't begin to cover the nights where pain prevents me from falling asleep for hours, or how it wakes me up crying, or how the shower can sometimes be one of the most painful and stressful experiences of my day. It doesn't explain how it can keep you bedridden for days, leaving you to feel like an empty shell of the human being you once were.
"Sensitivity to Sound" doesn't begin to describe the inconvenience, frustration, physical discomforts, embarrassment, and even danger of the time I fainted at a conference in the middle of a speech by my favorite speaker.
"Concentration Difficulty" can't truly describe the anxiety and anger of a weakened word recall when my professor calls on my during class, or the embarrassment of constantly forgetting entire conversations, or a diminished comprehension leaving me unable to even read or write a sentence at times.
I could go on, but I think you get the point. If you truly care to understand how a person suffers due to illness - if you truly want to understand what it's like to spend a day in their shoes - then just listen to them. Don't undermine their agony and distress by visiting sites listing symptoms written by authors who've never experienced the symptoms themselves, and then go on assuming you know all there is to know about their day-to-day struggles. These lists just don't do the plight of the sufferer justice.
Once you make an honest effort to understand someone, I believe you'll find that a multitude of opportunities to learn, grow, and connect with others will present themselves.
I don't know if I'm alone in this, or perhaps due to my age and inexperience I simply previously had a very naive perspective in this regard, but I just don't care for generic lists explaining medical conditions.
When I was first told my diagnoses was "probable fibromyalgia," I, of course, went home and looked it up straight away. What I found was that many internet sources listed the following symptoms: widespread pain, fatigue, sleeping difficulties, and anxiety and/or depression. Some sites would specify in more detail what sort of pain, such as stiffness, joint pain, muscle pain, ect... Other sites would include additional symptoms such as headaches, irritable bowel syndrome, and concentration difficulty.
I remember thinking "Hm. Well, good, this seems manageable." At this point, I was still thinking medications would have me up and out of bed and feeling great again in no time! How wrong I was.
To reiterate, it was probably naive of me in failing to fully grasp the severity of the symptoms, but on paper, it just seemed so much easier and simpler than it actually turned out to be. Truth be told, I really did not think much of the diagnoses. At least not until things became worse, not better, even with medication.
Another grievance I have is how many symptoms are left out of those lists, such as dizziness, disequilibrium, muscle spams, twitches, jerks, tremors, and all of the various sensitivities. Just to name a few. Or that the symptoms of fibromyalgia have the ability to cause additional symptoms themselves.
For example, I, like many others with fibro, experience hypersensitivity to light, sound, and smell (some people also experience sensitivity to taste). This is something often not included in symptoms lists, and I thought I was going crazy when it began. Even more scarcely mentioned are the symptoms sensory overload may cause as a result. One such possible symptoms is syncope, or fainting, a symptom which I have grown to become quite familiar with.
Now, don't get me wrong - I know those generic symptoms are meant to be general and used as a brief overview of what certain medical conditions are like, or entail. I also understand that if you have a certain illness, it's your personal responsibility to educate yourself and do further research.
But let's be realistic here: if someone tells you they have a disease you don't know much about, you're probably going to go onto one of these sites and glance at this generic list, and unless something like paralysis or death is listed, you're likely not going to think much of it. My qualm is that when people do this upon learning I have fibromyalgia, while they think they now possess a greater understanding about what I'm going through, I know that they still have no idea.
What I've learned is that you don't really "get" the sufferings and daily obstacles an illness entails until you take the time to read or listen to those who suffer from it themselves. Sufferers tend to tell quite a different story than generic lists do.
Upon making this revelation, I found myself hanging out in forums of all sorts of illnesses I thought I previously understood. It was quite an eye opening and humbling experience, and I suggest you do the same, especially in the event that you meet someone with any sort of illness.
In depth, count-by-count explanations about "A Day in the Life" of someone with (insert illness here) is often such an enlightening experience, whether you can relate to it or not (which probably explains the success and popularity of The Spoon Theory). Even articles attempting to explain the effects of these symptoms can't begin to suffice compared to a raw explanation from a sufferer.
In the end, "widespread pain" doesn't begin to cover the nights where pain prevents me from falling asleep for hours, or how it wakes me up crying, or how the shower can sometimes be one of the most painful and stressful experiences of my day. It doesn't explain how it can keep you bedridden for days, leaving you to feel like an empty shell of the human being you once were.
"Sensitivity to Sound" doesn't begin to describe the inconvenience, frustration, physical discomforts, embarrassment, and even danger of the time I fainted at a conference in the middle of a speech by my favorite speaker.
"Concentration Difficulty" can't truly describe the anxiety and anger of a weakened word recall when my professor calls on my during class, or the embarrassment of constantly forgetting entire conversations, or a diminished comprehension leaving me unable to even read or write a sentence at times.
I could go on, but I think you get the point. If you truly care to understand how a person suffers due to illness - if you truly want to understand what it's like to spend a day in their shoes - then just listen to them. Don't undermine their agony and distress by visiting sites listing symptoms written by authors who've never experienced the symptoms themselves, and then go on assuming you know all there is to know about their day-to-day struggles. These lists just don't do the plight of the sufferer justice.
Once you make an honest effort to understand someone, I believe you'll find that a multitude of opportunities to learn, grow, and connect with others will present themselves.
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