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.


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 ;)

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.

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
-Hair Loss
-Muscle Twitching
-Facial Paralysis (Bell's Palsy)
-Tingling, Itching, Crawling Sensations (RLS)
-Burning or Stabbing Sensations
-Jaw Pain or Stiffness (TMJ)
-Double or Blurry Vision
-Abnormal Sensitivity to light, sounds, smell, and taste (sensory overload)
-Irritable Bladder
-Abdominal Pain
-Joint Pain or Swelling
-Muscle Pain
-Shortness of Breath
-Chest Pain/Pressure
-Night Sweats
-Heart Palpitations
-Faintness/light headedness
-Poor Balance
-Mood Swings
-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!"


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!


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.

Thursday, March 1, 2012


What is fibrobotics, you ask?

To answer that, we must first assess how the term “fibrobot” came to be.

It is a long standing joke in my family that I lack emotions and am reminiscent of a “robot.” You see, I am quite difficult to anger. Even when I am angry, it often goes undetected due to my uncanny ability to be facetious. I believe feeling anger and acting angry are two very separate things. You can’t always help how you feel – but you can control how you express it and act about it. So, when angry, I act and speak in jest in order to make others and (especially) myself laugh and more comfortable. And it works, every time.

It’s the same with being sad or nervous. In fact, the only time others have ever seen me cry has been due to death of loved ones. But by and large, to those around me, it seems as if I never experience emotions considering my lack of their expression. My feelings, positive or negative, are extremely private to me.

As you may have deduced from previous posts, it takes a lot to alarm me, even with my body. I (wrongly) assume most symptoms are normal and not a big deal and I don’t want to make a fuss out of them. I adapt extremely well, and silently and privately accept things as they are and make adjustments accordingly. This, too, has lead to speculations of my secret life as an android.

I am also very logically driven and lean toward science, evidence, and other analytical processes. I am inquisitive, calculating, and perspicacious, and none of this helps my cause to culminate comparisons to an automation.

Thus, references to my being a cybernetic organism is a frequent occurrence among my circle of family and friends.

Alas, Cyborg I am not.

I just am - I happy, laid back, and possess an unquenchable thirst for knowledge about the wonders of the world; but I digress.

Upon my diagnosis and becoming more involved in the fibromyalgia community, I noticed all of the charming little nicknames used for those with fibro, such as fibromites, fibromyalgics, spoonies – you catch my drift. However, none of these seemed fitting for me.

Then one day, an odd conversation with my cousin lead to the use of the words “Fibromyalgia” and “robot” in the same sentence. Instead, I inadvertently blurted out “fibrobot”. It’s simple accidental portmanteau really, but with fibromyalgia, I believe such speech blunders as involuntary portmanteau, spoonerism, malapropism, and metathesis occur more frequently - so I like to blame this on my fibro fog.

“That’s what you should call yourself – a fibrobot,” my cousin said.

After some discussion, we decided the term to be quite fitting due to my “robot tendencies,” not only for me, but perhaps anyone with fibromyalgia.

For example, with FM, you feel everything – everything - from every drop of water dispensed from the shower faucet or pouring from a rain cloud, to every sensation of the wind, to every hair movement and beyond – our bodies feel everything.

A robot, on the other hand, feels nothing.

With fibromyalgia, you lack much, if any, control. There is no control of when your flares occur, of good days or bad. No control of the severity of your pain, what kind of pain, or where it hurts. There is no control as to what medications will work for you. There is no control of what symptoms you experience and those which you do not. There is no control over your energy or how many spoons you possess for the day. There is no control of what plans you will be able to keep, and those which you will be forced to cancel last minute. There is no control in discovering a cure. Okay, maybe no control is too strong, but it is minimal.

Bottom line: There is very little control over a life with fibromyalgia.

Ahh, but a robot is very much in control. It is programmed to be productive and efficient and is equipped with the intricate processes to work accordingly (in theory).

Plus, robots are just plain cool.

Ergo, fibrobotics, to Fiona and company, is a way of taking on the ways of the humanoid. Less negative emotion and feeling. More control.

Now that’s not to say the objective is to adopt all of the ways of the bionic person. Even if that were plausible, the purpose is not to be completely devoid of emotion or feeling – it’s about finding a balance. Again, less negative emotion and feeling, more control.

 Fibrobotics is about the steps along the way to achieving these goals, and Fibrobot is my label of anyone suffering from this debilitating illness who is striving to overcome it, accomplish these objectives, and reclaim their life.

And I like to think everyone with fibromyalgia is a fibrobot. :)