Blog Spotlight: Chronically Creative

I am spending some much needed alone time while the toddler is napping reading blogs. I stumbled across this post in my random browsing and it is one of the most heartfelt and relatable posts I have ever come across. I feel like I can relate to what Emily, Miss Chronically Creative, writes as she explains what it is like trying to maintain relationships with a chronic illness. Finding things that we can hope for during our most lonely periods is important. For me, it is reading blogs and now writing one. I find comfort in reading other people's stories, and it is one thing that keeps me going. Thank you Emily, if you are to find this. Your blog is very inspiring and I appreciate your honesty.

Check it out here:

Chronically Creative

http://www.chronicallycreative.net/2012/09/finding-hope-in-loneliness.html

HUGS; 6 ways To Avoid Them

This is typically what I think to myself when people try to hug me. Not because I don't like hugs, but because they stinking HURT! Especially when they squeeze just a little bit...... and it feels like they are the Hulk and they are crushing every bone in your body with little effort. There are a few things you can do to avoid hugs:

1. Awkwardly pull back into a half-ass handshake, and act like that was what you were going for the whole time.

2. Point into space and claim you saw aliens. "Hey, look over there!"

3. Claim you are terrified of germs. "Eww, gross, don't touch me."

 

4. Act so completely insane that the person decides not to hug you.

5. Run away, hide, or escape.

 



6. Flat out deny the hug.

 

 

-Aimee

Speaking Up On Fibromyalgia

Fibromyalgia and chronic pain conditions are awfully lonely ailments to live with. Not many people know that millions of people live in nearly constant pain. It is not common knowledge. In fact, although fibromyalgia has been around for numerous years, it has only been almost fully accepted within the last few years. Most of the time if you were to tell someone that you had fibromyalgia they would look at you like you have 8 heads. So even if it is accepted by the medical community, it is still not a condition that is widely known by everyday people. Of course, once you are diagnosed, your family may become more knowledgeable about it if you are lucky. They might try to do some research and learn the most they can about it, but most won't. Though, in my own opinion, if they truly cared they would make an effort to at least educate themselves about your condition and how it affects you. But, on the other side, it is also our responsibility to help them become more educated about our condition. This is the hard part! There are some resources out there with things you can print off for your family members, but most do not really touch on what it is really like to live with chronic pain. So what can we do? We could make our own pamphlet with all the information we feel is relevant to our situation. We could write a poem or letter to our family members. We could draw what we think chronic pain looks like. We could write a song or prepare some sort of speech. Whatever your talents are focus on that to get you started. If you are good at drawing, start there. Let's create some amazing informational pieces for family members that millions of people could use to help them describe what it is like. Let's raise awareness! If you know of any great resources, please share.

Really, one of the first tasks to tackle after being diagnosed is to talk to your family and friends. This sounds so simple, but yet it is one of the most difficult things to do. I struggle with this every day. One thing we always worry about is that we won't be taken seriously. This usually stems from the years it takes to even get a diagnosis and the years we felt misunderstood and ignored by our doctors, family members, and friends. We could have spent years of our lives being thought of as lazy, crazy, or as hypochondriacs, I know I did. Those were the most difficult years of my life, and I just learned to change the way I relate to people including becoming more closed off about my illness. Besides feeling misunderstood we also don't want to complain to people. When we do talk about it, we assume that the person having to listen to us thinks we are only complaining and whining about our misfortune when really, we just need to vent, to be heard. We worry that we will put extra burden on our loved ones by telling them about it. We don't want to make others worry about us or feel sorry for us, we just want understanding. Mostly, we don't want to hurt people, and we know that the people that love us hurt when they know we are suffering. It isn't easy on them either. Watching the one you love suffer and not being able to do anything to help. I imagine it is a harsh reality for them as well. So, not only does our illness cause us to suffer, but also those around us as well.

If you broke your leg or have some sort of skin condition, there is at least some story behind it or some physical evidence of it being there. People can see it. You have a cast that is visible and often other people have broken something and can relate in some way, or they might even ask about it. It is not like that with an invisible illness. For the most part, nobody has any idea you even have a chronic illness. Nobody is going to ask about something they do not know about. Nobody is going to say, "Oh, how much longer until you are all healed up?" (and if they did, we would probably get a bit bent over the comment). There is no healing of chronic conditions. They are just that, CHRONIC, meaning long-term, FOREVER! It will not go away, and it cannot be cured. Yes, there are things that can help some, but it is something we will live with for the rest of our lives. The pain, the fatigue, the brain fog, the unbearable twitching, and wreathing, and crawling, and stabbing sensations. The bowel irritability, the depression and anxiety spells, the exertion intolerance, the hundreds of symptoms. Those are not going away. In a way, we learn to live this way. We teach ourselves how to ignore the pain and twitching. We learn how to hide our symptoms. We learn how to get around and space out our days. We learn what helps and what doesn't. Honestly, chronic illness is very time consuming. It is amazing how much effort and time goes into trying to make yourself feel just a little bit better. Hours and hours every month spent in doctors' offices, physical therapy, and other therapies. Not to mention the amount of time we spend trying to learn as much as possible about your particular illness. I don't know about you all, but I spend hours learning about all of my illnesses and trying my best to find things that can help me more. I like to be educated about whatever I am dealing with, so much of my time goes into that.

In all reality, it's not like you can strike up a conversation about pain. Nobody really wants to talk about pain or unfortunate situations. It is only in our nature to avoid subjects involving pain and unpleasantness. Besides, trying to talk about our unpleasant symptoms only makes other people feel uncomfortable. We see it, and we really try not to make people feel uncomfortable with us. We feel as if we are dragging our loved ones down with us. This is not something we want to do. Hence the reason we typically just stay quiet about it. There is no sense in making other people awkward and uncomfortable along with us. Why drag others down with us? But, what happens when we avoid talking about our situation for extended periods of time?  Well, we go bat-shit crazy is what happens.

We tend to start secluding ourselves from the outside world for fear of the pain brought upon ourselves and others. We fear pain so much that it controls every waking decision of our lives. We start obsessing on how to make ourselves better. We hide from our friends and family so they don't find out how bad it really is. We fight tooth and nail to make it through the rough times, and we use every bit of energy trying to get well again knowing that it may never happen. We loose ourselves in the midst of our illness.

If we do not find some sort of way to communicate, our illness can and will consume us. So, I suppose that whether or not we are perceived as whining, lazy, hypochondriacs we have got to speak up and speak out. Write a poem, a speech, a letter. Make a blog, a diary, a craft collection. Raise awareness and don't be ashamed. Attend a support group, or create a chronic illness event. Do what makes you happy and allows you to have a voice. Let's stop being ashamed, scared, and secluded. Let's find a cure!

The Rescheduling of HCPs and How it Affects People with Chronic Pain

The DEA's rescheduling of narcotics has affected the chronic pain community in a huge way. It has resulted in only more suffering for those who live with chronic pain. Many patients have lost their access to pain prescriptions all together, and those that were able to keep their prescriptions are now under more scrutiny than ever. Patients that were able to continue their prescriptions after the rescheduling of narcotic medications essentially began being treated as potential criminals. They are often asked to sign contracts by the doctors who prescribe them their medications allowing the doctor to take a urine sample at any time, any day. This is for the same reasons that are for the people on probation and parole; to make sure they are not doing anything they shouldn't. This protects the doctor, and allows the DEA to have control over how much of the prescription medications are given out and watch to see if they are being abused. These contracts typically contain components forbidding the recipient from selling or giving their prescriptions to other people. Something someone in severe pain most likely would never do. They need those medications for themselves and cannot afford to loose them.  The contract may also allow your prescriptions to be counted at any time as well. Under the DEA's restrictions, you may also be subject to less medications for per refill, add needing a physical prescription versus an electronically sent prescription for every single refill. This means that you must visit your doctor every time you need a refill to retrieve a paper prescription. More doctors visits means more money is needed for co-pays, deductibles, and travel. Travel is especially expensive for those who travel to a neighboring city for doctor's visits. This results in time needing to be taken off from work as well. Less pay and more need for income to pay for such a luxury as to have some pain relief. Yet, those of us that cannot even obtain a prescription for various reasons are envious of those that have the chance to even endure that struggle. We would jump through those hoops and endure the extra milestones just to receive such relief.

Unfortunately, these restrictions are not easy on the medical providers either. Often, they feel like they cannot meet their pain patient's needs. If they do prescribe a certain amount of prescription pain medications then they soon become the subject of scrutiny by the DEA. They can have only a certain amount of patients on pain medications (here it is 12) before they start being investigated. Out of the hundreds of patients they see, they must choose the 12 most deserving people, and hope to find some backup form of relief for the others. The problem is, with chronic pain, there is not really any other form of relief. Please realize that your health care provider probably does not agree with these restrictions either. They are only trying to protect themselves and their practice from the DEA, and that is not something we can take personally.

When people in chronic pain do get a pain prescription from their doctor, getting it from the pharmacy is a whole other problem. Often, the pharmacies run out because of the current restrictions. Even if they do not run out, the pharmacists are able to choose who can and who cannot get their prescriptions. People who pick up prescriptions for pain killers from pharmacies often feel like they are under tremendous scrutiny by the pharmacists and others around them.

So, those of us with pain are often left in the sidelines of this "war against narcotics". We have very little access to treatments that we do find helpful. Some people may benefit slightly from their antidepressant/diet/exercise regimen, but most do not. Although antidepressants are helpful for those that do exhibit depressive symptoms, but what about those who don't? I was not depressed before I was started on a whole array of different antidepressants. After taking them for some time, I became very depressed. They are not meant to be used for people who are not depressed to begin with because they tend to have the opposite effect. I have tried the two FDA approved medications for fibromyalgia with little to no improvement. I take my vitamins and minerals. I take my muscle relaxers. I use essential oils. I have regular chiropractic adjustments. I do stretches. I exercise regularly. I do acupuncture. I eat well. I fill my body with mostly healthy things. I have detoxed. I research regularly and try new things ALL THE TIME. I have tried nearly every trick in the book to find some sort of relief, but so far not a damn thing has made enough of a difference for me to continue it. The doctor has no idea what to do with me, my family has no idea what to do with me, I have no idea what to do with me. I feel like I have reached to end of my rope, and that nothing can help me. I will keep trying of course, but I am running out of things to try.

Now, I kind of feel like there are two solutions to help alleviate some of the pain, yet they are both illegal. I could go out and buy a pain prescription from somebody, but for many reasons, it is a bad idea. I have thought about it many of times in the past, and still do. I mean if I cannot rely on my doctor, or the DEA, to at least help me make it through the day without excruciating pain, then maybe I should just help myself. Here are the problems with that: I could wind up in the legal system, and trust me, I have met plenty of people that have wound up in the system for 6 plus years for a pill or two. If it is not your prescription, it is a big deal. Very unwise, but doable. Imagine the price of living that way though, both for the money cost, and for the chance you were caught. That is jail time, and if you are lucky, pre-release, then probation for many years after that. Nothing I am interested in. If I beg my doctor then I will only look like a drug seeker. But, really, I am only seeking some relief! My age is an obstacle, I mean who would give a pain killer script to a healthy "looking" 24 year old? I just want something to help!

Another option is marijuana. I do use marijuana for my symptoms. No I do not just lounge around my house eating cookies, no I am not a "stoner", nor do I abuse the herb. But, to be able to find something that could bring some relief with it is downright wonderful. It helps, not tremendously, but it makes a noticeable difference in the amount I can accomplish with it versus what I can without. It allows me to complete my chores around the house, cook meals, and everyday tasks that need doing. I do not want to sit around when I am using it, I want to get things done because I feel well enough to do them, or at least push my way through them. Marijuana allows me to do that. Problem with this is, it is not a medication that I can take at work. So, work becomes the most painful and difficult part of my day, everyday. 

The troubling part is, my marijuana use is illegal. It is not legal in my state except for medical reasons. But, do not have my card because of the cost, criticism, and paper trails that come along with having one. My doctor also has not approved of the idea, so I haven't tried very hard to get one. Because of the inability to receive prescription pain killers, I have had to illegally obtain something that will help. I do not want to be a criminal, really, but I felt like I don't have much other choice at this point. Ah, thanks DEA! Congratulations you are creating thousands of criminals. Just so you know.......

Hundreds of thousands of people are left to rot in their pain state with little help from any direction. It is unfortunate being one of them. With no place in the medical system, chronic pain sufferers are kind of like the lonely outcast group with nowhere to turn. I don't know about you all, but I feel very let down and neglected by the entire health care system, the DEA, and the political groups that get to decide our fates.

In the long run, I am going to assume that it is only going to take a few more years for the legalization of marijuana, and I cannot wait for the day that I can medicate my illness in a legal manor. It is my illness, and I should be able to treat it the way I feel fit.  I am tired of living in pain, and I am tired of being left on the sideline in so many ways.



This is a judgment free zone, so feel free to leave a comment. I would like to hear your opinions, thoughts, ideas, and anything else.

-Aimee

"Normal People SIck"; Visiting the Doctor

One of the troublesome things about having fibromyalgia is noticing when you have something else going on in your body besides the "typical fibromyalgia" stuff. We are so used to things just not being right, so when other symptoms start cropping up we dismiss them and assume they are caused by the fibromyalgia. But, what if they aren't?

I spent the last week or so in a dizzy haze. Every time I got up from my chair, rose from bed, or even moved too quickly, it would result in sudden onset dizziness and nausea. Okay, I thought, more vertigo, yeah! My body would not let me sleep through the dizziness, nausea, and hot & cold sweats, so it had been well over 2 straight nights of insomnia. I was already feeling unwell and that sure didn't help, but what's a couple more symptoms, really? No big deal, I got this! Until.... I hopped in the car and starting driving to work. As soon as I came to a park my mouth starting filling with saliva, my chin started quivering, and well, the morning handful of medications tasted much worse coming back up. WOW, they sure do burn! I ran into the building to grab a glass of water to wash out the taste, except running was not the best of tactics. As soon as I came to a stop in front of the watering hole, all I could do was hold on to the wall to keep myself from falling into a vortex of queasiness, dizziness, and more vomiting. Let's just say, I did not make it at work for very long. I could not possibly focus on anything, let alone be productive enough to get anything done. I have experienced the nausea and dizzy spells before, several times. It's a trick of the trade really. But, I RARELY vomit. Something was not right. This had been getting worse and worse over the course of over a week. Maybe this wasn't just typical fibromyalgia stuff, maybe this was something else? We all know that inner argument we have with ourselves, where we try our best to push it off on being the fibro instead of something else. Not until it really proves to us that it isn't will we finally do something about it.

Finally, it got bad enough to where I simply had to go into the urgent care. Though, not before I started fretting about going in to find out that there is nothing going on, again. Not before I pictured one more doctor giving me the "What the hell is wrong with you?" look, again. Certainly not before I pictured the lab tests giving no concrete answer, AGAIN.  This is what I remember any time I think about going in and I always wonder why I really bother. I mustered up the courage to go in anyways.

I arrived at the urgent care, thinking that I would head straight back to work after I was done there, but 3 hours later I left with little hope of getting back to work that same day. After one hour in the quickly filling waiting room, I finally was moved to a room. The nurse took all of my stats per the usual. Normal heart rate and rhythm, normal temp. (funny because mine must read several degrees cooler or something), normal respiratory rate, normal blood pressure, normal, normal, normal. After that, I fell asleep waiting for the doctor, so I really could not tell you how long I waited. I did not even care at that point, it was just nice to rest my head after the insomnia I had been experiencing. Anyways, Dr. came in and started asking the typical questions. What are your symptoms? I am always confused on how to answer this question. Do I include the usual stuff, the unusual stuff,  just the new stuff, or a combination of what ever I find relevant? Usually I chose the latter. But, what if I am missing something because I am dismissing it to fibromyalgia? Or what if I accidently add symptoms that are typical fibro and only confuse the process? Next question; Are you experiencing any pain? Well, YEAH! That is what I want to say, but that is not what they are looking for. Okay, so is there any pain that recently started that might have anything to do with what is going on inside my body? Could they all be? Should I tell him everything that does hurt? Should I just say that I am not experiencing any new pains? Should I just lie about this or should I tell him "everything hurts"? I hate that question! How the hell are we supposed to answer that?!?! Next; Are you having any bowel or bladder difficulties? Well, yeah, but they started years before this, so do I say yes, or no? Do I really need to tell him about my bowel habits if I find it not relevant? Does your stomach hurt when I do this? *poke* *push* *knead* You can't really hide the grimace on your face when they start shoving their hands into your intestines. Oh my, let's make sure you don't have kidney or liver problems!!! No, Dr. it must just be regular pain, I say. "Regular pain?" "I'm sorry, no pain is regular." Well, for me it is. Of course, he checks markers for kidney and liver dysfunction just to be safe, any Dr. would.

It is amazing to me how much more complicated regular old doctors visits are for people with chronic pain conditions. I do not want to lie to my doctor when I get the regular rundown of questions, but I simply do not have the energy to try to explain what exactly I mean by every answer I give. Usually, getting into my RCP is at least a month's wait, so for cold/flu, and other infections and such, I typically have to go to an urgent care facility or walk-in clinic. The problem with this is the doctor's in such a place usually do not have much practice in chronic conditions. Simply put, we would not go see an urgent care provider for anything chronic because that is what specialists are for. Usually, this also means they have little background in ME/CFS, fibromyalgia, or chronic pain conditions. This just makes it more complicated for us. We usually have to find out what the doctor knows and what they don't so we can give our information accordingly. More often than not, we are more clinically capable and knowledgeable about chronic conditions than they are. Fun fact: In the typical 8 years of schooling that a doctor receives, they cover 'pain management' for an entire 2 hours! TWO HOURS! Chronic pain is considered to be the biggest medical drain on society, and they spend 2 HOURS learning about it. NO F***ING WONDER!!

Well back to the visit; I did get the "What the hell is wrong with you?" look a time or two, but I didn't have enough energy to care really. I got a urinalysis and a basic blood differential panel. I took another "nap" while waiting for the results. Nothing too abnormal. Just a high white blood cell count. (For some unknown reason I have had a high white blood cell count almost every single time I have a basic blood panel, except for once since 2010; roughly one or two normal results out of 30 times) I did not find it strange by this point, but what he found strange was that I had an abnormally high leukocyte (WBC) count, but it did not specify which one was high. Leukocytosis (elevated WBC count) can usually point to the cause depending on which kind of white blood cell is the one that is elevated or decreased. Usually one of the types stands out to show more information about the cause. If it shows increased percentage of basophils, for example, it would be more likely an allergic reaction, and an increased percentage of lymphocytes would be more correlated with a bacterial infection per say. So, he really was not sure what kind of infection it was, or even if it was an infection. He quickly prescribed me antibiotics (another one of my pet peeves), prednisone to speed up the healing, and an anti-nausea medication. He said that he was assuming it was a middle ear infection, or vestibular neuritis. At that point, I just wanted to get the heck out of there, so I gladly agreed that that could be the problem, and went to fill my prescriptions. Hopefully, it is the problem and I can get back to normal Me-ness.

Getting other problems on top of having fibromyalgia is often extremely confusing. In some sense or another, our immune systems are thought to be out-of-whack. We typically get strange and unlikely infections, but we often have trouble really identifying the overlaying problem when it starts. I know I do. I could have had this "infection" for months and not have known. But, it is important to really listen to your body. If you feel that there is something "different" going on, then it is always wise to go have it checked out. Many of us find going to a doctor outside of our fibromyalgia network much more difficult than the typical person, so we generally wait until we know we absolutely need to. Sometimes this results in more complicated infections or more severe illnesses because we put them off without treatment. When we are sick with some sort of infection or other illness, our fibromyalgia tends to flare as well. This results in increased pain and lethargy, which makes our other illness more difficult to deal with than what is normal. A cold or ear infection can literally wipe us out completely, especially if we are teetering on the edge of a flare as it is. All this noise and sickness makes our immune and central nervous systems go even more haywire, and begins another cycle of extreme flare activity.

Although, we usually detest the idea, it is a good thing to go in and make sure there is nothing else going on when you feel more strange than usual. There is, though, usually harm to be done if you put off going in, causing even more flaring.

Thermoregulation in Fibromyalgia

http://altered-states.net/barry/update274/

Last night I was feeling under the weather and just lousy. I felt like I was coming down with a "normal people sickness"! Now, those of us with fibromyalgia know exactly what that means. Throw in an illness like the common cold on top of our everyday sickness and we just feel like the world as we know it is ending. Though, strange as it is, my fibromyalgia sometimes gets better when I get "normal people sick". Don't judge, but I sometimes wish to get a cold just for an escape from the fibro for awhile. Other times, I'm not so lucky. Anyways, I was feverishly burning up, and felt like I was going to pass out because I was so damn hot. So, I went and grabbed my temporal thermometer, and took my temperature. 95.0 degrees Fahrenheit!!! WTF? That is hypothermic temperature. This cannot be right I told myself, so I compared it to my sons temperature. His was a healthy 98.4. So, I tested mine again. 95.2. And over, and over again I took my temperature. They all came out about the same and my son's always came out normal.

After a little bit of research on human body temperature I learned that in temperatures such as this classify as hypothermia. Typical symptoms of hypothermia are intense shivering, bluing or greying of the skin, mental changes, and a few others. I didn't have any of these, except for the mental confusion and being really unfocused. No shivering, no discoloration of the skin. I did not even feel cold. In fact, I felt very warm. So, what was going on? This is not the first time I have noticed that when it felt like I should be running a fever, my temperature was abnormally low. It went up by a couple degrees but peaked at 97.2. This morning, I took my basal body temperature (the first temperature in the morning before any activity). It was at a steady 96.8 for most of the morning, and rose to 97.6 in the afternoon. Still below or just finally reaching the normal range,.

Now, any physician or anybody with any sort of medical background knows that a person's body temperature is one of the most important indicators of health. A low body temperature can lead to all sorts of significant symptoms, most of which are the same symptoms that are associated with fibromyalgia. Headaches, aches and pains, slow metabolism, weight gain, mental fogging, sleep disturbances, and many, many others. So, what is the connection?

Current studies point to a central nervous system component of fibromyalgia, particularly the autonomic nervous system. This controls everything we are unconscious of; heart rate, breathing, and body temperature among other things. Ah, body temperature. Our hypothalamus is supposed to be helping to regulate our body temperatures, which is yet another organelle that has been proven to be affected in fibromyalgia. So is our unbalanced nervous system causing problems for our hypothalamus, or is our hypothalamus making adverse changes in our nervous systems? I have not run across anything that gives me the answer to this yet.

Either way, having a low body temperature can wreak havoc in your body. Imagine really thick viscous blood that flows more like molasses. Imagine every cell in your body trying to perform it's duties in an environment that is not meant to support cell life. Imagine molecules slowing down and not being able to perform their duties at all. Imagine a pH change significant enough to start causing cells to commit apoptosis, or cell suicide, programmed death. Slowly, these cells die off and the regeneration of cells is much slower than in a normal temperature body. Eventually, sickness ensues and wins out. If your body stays in a state as this for long enough it can become Wilson's Temperature Syndrome, which is associated with poor thyroid functioning. You can learn more about it here: http://en.wikipedia.org/wiki/Wilson%27s_temperature_syndrome

The question now is how do you increase your body temperature? Exercise is the most obvious answer, but typically the temperature returns to below normal soon after exercise is complete. Maybe natural supplements? Chili peppers? Hot baths? More and more exercise? I really am not sure.

Has anybody else noticed a connection between their body temperature and symptoms of fibromyalgia, and if so, how did you regulate your body temperature? Did you share your temperature changes with your doctor, and if so, what advise did they give you? Any comments you leave are sure to help not only me, but many others who are also have these same questions.

Thank you for reading.
-Aimee

Two Takes on Fibro from the American Chronic Pain Association

These are some interesting survey results by the American Chronic Pain Association:

This was found at http://theacpa.org/TwoTakesOnFibro.aspx

On this same page, there is another, lengthier survey (the Executive Summary) that also has very interesting results. Please, check it out. I am working on getting it up on Fibromyalgia Files, but until then, this is where you can find it.

 

 

On the ACPAs website, there are many helpful tools for people with fibromyalgia and their supporters. This survey shows us that more often than not, the general population has a different view of fibromyalgia in some aspects, yet has the same views in other areas. For more information visit the American Chronic Pain Association webpage at theacpa.org

 

Colaborative Reading and Information List for People With Chronic Illness

 

This is a collection of reading materials from other sites and such. They are all things I find interesting and think that other people with chronic illness will find interesting as well. I would like to make this a collective effort by the chronic illness community, so please feel free to pass on your favorite reading materials and they will be added to this list. You can do this by using the comments, or emailing the information to me. Thanks for your help! -Aimee (aimflo21@gmail.com)
 

 

Magazines & Books

Fibromyalgia and Chronic Pain Magazine from the National Fibromyalgia and Chronic Pain Association: (Please participate in their survey Hydrocodone Rescheduling: The First 100 Days)

http://www.joomag.com/magazine/fibromyalgia-chronic-pain-life-spring-2015-issue-11/0105718001425619808?short

 

 

Videos

 

Struggling to be Me With Chronic Pain:

https://www.youtube.com/watch?v=FPpu7dXJFRI

 

 



 

 

Clinical Reviews/Case Studies/In-Depth Reading

 



Oxidative Stress

http://www.oxidativestressresource.org/

Oxidative Stress in Fibromyalgia
http://link.springer.com/article/10.1007/s00296-003-0427-8

Oxidative Stress and Mitochondrial Dysfunction in Fibromyalgia

http://www.ncbi.nlm.nih.gov/pubmed/20424583

Mitochondrial Dysfunction- A Biomarker for Fibromyalgia and ME/CFS?
http://www.prohealth.com/library/showarticle.cfm?libid=18130

Mitochondrial Myopathy Presenting as Fibromyalgia (Case Study)
http://www.medscape.com/viewarticle/761364

Drugs Cause Mitochondrial Damage
psychrights.org/research/Digest/.../DrugsCauseMitochondrialDamage.PD...
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0CCcQFjAB&url=http%3A%2F%2Fpsychrights.org%2Fresearch%2FDigest%2FNLPs%2FDrugsCauseMitochondrialDamage.PDF&ei=QNwOVZ3rMc3coATWgoDwCw&usg=AFQjCNGvk016HTfiedDe4nv5K2fTjv0T7Q&sig2=EQ6oYl_s9SuEiCST0zaXtw&bvm=bv.88528373,d.cGU

 

 

Humor

 

You Know You Have A Chronic Illness When.....

Reprint with permission of author, Lisa Copen, Copyright 2012.



http://invisibleillnessweek.com/2009/05/12/you-know-you-have-a-chronic-illness-when/

Chronic Illness Humor
Courtesy of quirkygirl22
http://whatshouldwecallchronicillness.tumblr.com/

Sick Humor: The Top Ten Worse Suggestions Given to Someone With A Chronic Illness
Via Amy-Beth Maran @ But You Don't Look Sick
http://www.butyoudontlooksick.com/articles/sick-humor/sick-humor-the-top-ten-worst-suggestions-commonly-given-to-someone-with-a-chronic-illness/

Chronic Illness Humor: Memes
Susie @ Pins and Procrastination, Great Blog, Thank you!
http://pinsandprocrastination.com/chronic-illness-humor/

Other Blog Posts

What It’s Really Like To Be Chronically Ill

The worst part is that there is no escape. There is no light at the end of the tunnel. There is no happy ending. There is no way to make the incurable go away.

Lauren Anne, 1 Aug 2014

http://thoughtcatalog.com/lauren-anne/2014/08/what-its-really-like-to-be-chronically-ill/

13 Reasons Why "You don't look sick/disabled" is Not a Compliment
Thanks to: So, Yeah, Anyways! Blog

http://soooyeahanyway.tumblr.com/post/89463472057/13-reasons-why-you-dont-look-sick-disabled-is

A Fantastic Tumblr Post on Dismissal
Via: Making The Invisible Visible. Thank you!

http://chronicallyinvisible.tumblr.com/post/86284061718/dismissal
 

10 Things You Should Say to Someone with Chronic Illness
Thank you to Susie @ Pins and Procrastination

http://pinsandprocrastination.com/10-things-you-should-say-to-someone-with-a-chronic-illness/

Headache in the Temples
Tony @ Integrative Body Works

http://integrativeworks.com/understanding-trigger-points-headache-at-your-temple/

 

Patients & Providers Tell Stories of Dreaded Urine Drug Test

Dr. Jeffrey Fudin's Blog

http://paindr.com/patients-providers-tell-stories-of-dreaded-urine-drug-test/

 

The Healthy Brain Food In Every Fridge That Gets Overlooked
PsyBlog- Understand Your Mind, 2015
http://www.spring.org.uk/2015/03/the-healthy-brain-food-in-every-fridge-that-gets-overlooked.php

The Things You Should Avoid Saying to Young People Living With Arthritis
Chronically Creative
http://www.chronicallycreative.net/2012/10/the-things-you-should-avoid-saying-to.html

 

Greiving Is A Natural Response to Illness, Don't Be Ashamed!

This is the one thing I have heard most often when telling people about my fibromyalgia. "Hey, at least it's not cancer or MS or heart disease, etc." Boy, you are right, at least it isn't cancer. Let me not grieve because I got so lucky that it isn't cancer. Telling people not to grieve over their illness because it could be worse is like telling someone not to be joyful because other people have it better than them. It makes absolutely no sense! "Don't be sad about your cat dying little Billy because little Sally lost her dog this morning". "Now don't you be angry about loosing your husband because so-and-so lost their mom". "Don't be happy about winning the jackpot on the keno machine because someone else won the lottery." "Don't rejoice in your healthy, happy child because someone else's child is healthier and happier." You see, life doesn't work that way. So, please stop telling me I should be happy because I don't have cancer.

- With Love From Every #Spoonie Ever

The McGill Pain Index, Ouch

McGill Pain Index score. This must be the average day with fibro, they probably averaged our good days and bad days. Like I said in a previous post, the bad days are comparable to the pain of giving birth.

You can't see my battle scars.

It is so interesting to me how we can feel the way we do and look just fine. How does this happen? I can go to work feeling like I was drug behind a truck with a rope tied to my ankle for 30 bumpy, rocky miles. Every fiber of my being aches. People can not contemplate how your head, legs, arms, neck, back, and feet hurt all at the same time. Your insides roll, and quiver, and shake. Your back muscles twitch, while your calves near spasm every time you take another step. Every muscle that isn't twitching is so taught with tension that your are afraid to lift things for fear that it will get any worse. You feel like every muscle is going to give out. On top of that the world is practically spinning, and you are so dizzy you feel liking running to the nearest bathroom to prey to the porcelain gods that this will all just go away! We can make it through days like this. We do it all the time. And still, even on days like that we still hear "You look good today". All you can do is laugh at that point really. I am so glad I can still look good through all of that, now that is fucking talent!

This is a common scenario for people with fibro, chronic pain, and autoimmune diseases. My body is destroying itself from the inside out, attacking itself all of the time, but nobody would ever suspect anything if it wasn't for us telling them. Better yet, you could be miserable one day and drastically better the next. Without us coming out and telling people, they would probably never know. We literally have to come out of the #Spoonie closet. This unfortunately usually leads to them not really believing you, or not understanding at all.  Still, it is a process, a difficult one. I started with my closest family, and didn't even do that until I had a near mental breakdown over the pain. I have mentioned it to coworkers in passing, and a friend or two. It was hard, and still is. There is never a good time to bring up your suffering, so you keep that beast locked up. Unfortunately, I am getting to the point in this disease that I am having trouble hiding it anymore. It is getting to be to much to hide, to lock away, to grin and bare. I am almost always limping, grinding my teeth, and holding my back like a 90-year-old. I can't hide it no matter how hard I try, but I also can't talk about it no matter how hard I try. Between a rock and a hard place, really. 

I know the healthy way to handle this problem, and I understand the destructive natures of the other path. I can preach about communication until I was blue in the face, but practicing it is a whole different story. Some day, I really hope to be an advocate for Fibromyalgia awareness. I want to start support groups, and plan events. I have a LOT to work on mentally before I get there, but that is my goal. I guess I better learn how to talk about it and even just tell people first. HA I set this specific goal for myself simply because I knew it would make me have to learn to better communicate, and learn to better live with what I was given. Which, will also help with my ultimate goal of becoming more transparent.

My husband has told me that the entire first 6 months we were dating, he had no idea how I even felt about him. That hurt to hear honestly, not because he hurt my feelings or anything, but because I realized that I don't show those I love how much I care about them because I am too busy hiding behind this damn mask. Too busy trying to hide my pain, my sadness, my worries, my fears. I didn't realize that in hiding all of these things, I began hiding myself. That is one sucky quality to have, so I'm going to change it. I'm going to become more transparent. For my marriage, for my son, for myself. My son should know how much I love him, my family, my friends, they should know too.

What the french is wrong with my toast?!?!?!

In addition to fibromyalgia I also suffer from anklyosing spondyloarthritis, chronic fatigue syndrome, cluster headaches, and GERD. These are pretty typical diagnoses that are associated with fibromyalgia. The fibro tends to be the biggest problem because of the variety of symptoms and the unpredictability of it, but the back pain from the arthritis is also, well, a pain. I am not sure if I can really tell the difference between the back pain from fibro or the arthritis, it is just there. Honestly, If I were to rupture my spleen, I wouldn't know if I should worry or not because I can't tell the difference between actual pain from injury and that of normal, everyday fibro-stuff. Half the time, I think someone is stabbing me in through the temples. I thought I was having a heart attach one time and rushed to the ER. Nope, just fibro crap and one very cranky ER doctor. So, now I am accustomed to just trying my best to ignore it, or keep myself occupied. Truth is, I always worry that if there was something else wrong, I would never know. Hopefully, I am lucky enough to only have to deal with my current stuff.

Now, I don't know if this is something that other people with fibro experience, but I get these spells where I have like a one or two hour episode of total sensory overload. My mind is racing, and spinning, and taking in every sound, and amplifying it ten fold. My body convulses and twitches like it is being pumped full of current. I have try to hold perfectly still so I don't tumble over or toss my cookies all over the place. I start to panic, and it turns into a full blown panic attack. The lights are so bright that I feel like they are scalding my retinas, and somehow my body becomes it's own combustion oven. I turn beat red and drip with sweat. The pain during these episodes is so intense that all I can do is curl up in a ball and cry. These are usually the only times that I cannot physically hide my disease, but I do usually go escape somewhere and hide from people in general.

Does anybody else have episodes such as these or any strange, atypical symptoms they would like to share? Please feel free to comment.

Let's talk about guilt and stuff....

One very difficult thing to live with is guilt. Many people feel guilty for various reasons, some that they can control, some that they can't. Some might have committed a crime, or hurt someone, broke someone's heart, not given enough, needed too much, or just plain feel guilty for being themselves. Guilt is a hard emotion to deal with. If you let go of your guilt, are you letting down the person you feel guilty for hurting? This scenario often only creates more guilt in the person trying to let it go. Yet, if you hold on to your guilt, the only person you are hurting is yourself. Some, such as myself, would rather hold on to the guilt themselves rather than hurt the people they are trying to protect. Guilt comes in many shapes and forms. Some might drowned their guilt in alcohol, some might hide their guilt, yet others might communicate their guilt, or become dependent on things to distract them from it. Everybody faces their guilt a different way, some healthy, some not so healthy.

I live with a great deal of guilt. There I said it, I FEEL SO GUILTY!!!! Wow, that felt good. I feel guilty for not being able to live up to expectations. I feel guilty for not being able to keep up with everyday things like a 24-year-old should be able to. I feel it everyday. I feel guilty that I don't have the energy to play with my son more often. For not being able to cook a decent meal every night, or even most nights. For not being able to keep my house clean. For not being able to enjoy hobbies like hiking and hunting. For not being all that I can be for my husband. For not being able to perform at my best at work. For disappointing my mom. For loosing my friends. For being unreliable. I FEEL SO, SO GUILTY.

One of the biggest decisions that I am facing in my life right now is my career. Nearly 8 years ago my mother opened the doors of her first restaurant. At 16 I began to work for her as a server. It was a tiny building next to a highway with only 7 tables and a small rap around bar. Within a year or two we had lines running around the outside of the building. Way too many customers for such a small place, so we found a new place and moved the business. Again, two or three years later we had outgrown another building. Now, our current location is also becoming a bit cramped. I grew up in this business. I have been waiting tables for as long as I could have a job, possibly 9 or 10 years. Now, this place has become my baby. It is my home away from home. I love it, I nurture it, I try my best to make sure that it is the best damn place to go in town, the cleanest place, and the friendliest place. This also means that over the years I have become the general manager, I make about 50 to 60 pies a week, I do all of the advertising, networking, hiring, firing, a lot of the training, organizing, blah, blah, blah. I am also "on the floor" waiting tables 4 days a week as well. I love my job! I mean I love my job when I am not having a flare...... I do a lot. Even for someone who does not have fibromyalgia, I do a lot. It is stressful, and wild, and irritating, and some days I just want to throw up my hands and quit, but I am so emotionally attached to it that this business has become my baby. I do not know what I would do without it. My mother has put up with a lot of my faults over the years, but I always try to make up for it by busting my ass, but sometimes I just simply can't. During the 5 years or so that I had been trying to figure out what the hell went wrong with my body, went to college and got my Associates in Psychology and went on to schooling for Medical Transcription because I knew I would never be able to keep waiting tables and managing a business. I thought that I had MS for well over a year so I thought I was going to have to take a desk job, and I enjoy medical jargon and such so I finished the Medical Transcription course. Then I decided I would never survive a desk job. I like to be up and going. Anyways, I stayed at the restaurant regardless. Now, I'm struggling to keep up at all.

This restaurant could be mine one day, and I dream of the day it is. I am set up for a future that can hopefully be adaptable to my ever changing health. If I could only make it until then. Half the time I honestly feel like I am dying, and that is no joke at all. I am sick, very sick. I am ill, and I have finally come to terms with the fact that I have fibromyalgia. I am draining myself, my health, by doing what I am doing. I am pushing my body far beyond it's limits. It is screaming at me to stop, but I can't.  There is no way that there is not severe damage going on inside my body. I can't stop here. I want to do so much more. I want to be successful, and be happy, and be a great mom, and a great wife! But, this disease is tearing down my dreams. I can't make it long enough to own it, but I cannot qualify for disability because I could technically take a desk job.  I am afraid for my future, and my capabilities. It is hard to make the choice between a career and your health, and that is a decision that a 20-something-year-old should not have to make, ever. That is a decision that I am not ready to make. It not only affects me, but also my family. My husband, my son, and my mom. I always wanted to prove to my mom that I could handle it, and I can, but not without really making myself suffer for it. I dream to be able to eventually own the business and fund my moms retirement account. But, how can I without killing myself in the process? I would feel so much more guilt to have to walk away.

Oh guilt, how you destroy me. I want to be the best wife and the best mom. I have trouble keeping my patience when I am in so much pain. But, no matter how much pain I am in, and no matter how deathly ill I feel, there is still a lot to be done. Dishes have to get done, the family fed, the kid his bath, and the nightly bedtime battle with a 2-year-old. My husband is supportive, he says "if you don't feel like doing things, just don't do them". I love him for understanding, but how the hell are things going to get done then???? He often works late, and is not here to help when at work, so it is up to me to get things done. I can't just not feed the kid because I don't feel well. It doesn't work like that. It is not practical. I feel so guilty when I can't fold the umpteen baskets of clothes that I can't hardly stand it. I do it anyways. I can't stand the dishes piling up, so I do them. The house needs dusting, so I dust. The lawn has to be mowed, so I mow. I just do it. I can't not. Unfortunately, this only results in more BLEEPING pain, and putting myself through all that while in pain only escalates all of the other freaky symptoms. Soon, it spirals out of control. The anxiety and depression start to roll in. The muscles in my arms, face, and legs start to twitch near constantly, then everything goes down hill from there. I have been in this same flare for more than 9 months. This is the longest one I have had so far, and it only seems to be getting worse. I am starting to wonder if I will actually ever come out of it. I am terrified that this is it. I cannot remember when my last "good day" was. I have become so used to feeling like hell that I really do not know what it feels like to be okay. There is so much more than pain in fibromyalgia, but the pain is the absolute worst part about it. I gave birth to my son naturally with no medication, and some days, the pain is comparable to that. At least that pain had an end. I broke my clavicle playing football with friends (which is the accident that triggered my fibromyalgia) and I would so much rather have that pain back than this. That pain also would have had an end if it didn't lead to this crap. But, if you put a person in that much pain for 9 straight months, they are bound to want to do something crazy. Knowing there is no cure, not even a single treatment that has helped only makes your soul bleed. Knowing your friends and family will never understand. Now, that right there is enough to drive a person mad! I sure hope I have the strength to make it through this. I'll keep fighting, because that's just what we do. We are bad asses because we do fight through this crap! And we survive, just with a little less of our soul.


(Side note: People need to realize that servers are actual, breathing, human beings. They have kids, families, aspirations, dreams, and work their tails off to make other people happy. Many servers have college degrees, but can make more money being a server. Also, severs should not be treated as robots, servants, or low-lives. Because servers make their living on tips, they are taxed heavily on those tips. If you go someplace and do not tip your server, you are actually costing them money to wait on you. Please, please, do not be one of those customers that costs me money to wait on.  15-20% is the average tip, but if your server worked hard to make your experience enjoyable, then they probably deserve more. Treat them well, and they will surely make you a priority and make your stay a great one. And even if you do not agree with tipping, at least be respectful and courteous so they don't associate your face with the devil.)

To the friends and family of people with fibromyalgia

To the friends and families of people with chronic pain conditions and/or fibromyalgia:

I would love to spend some time addressing just what exactly fibromyalgia is. Fibromyalgia is a central nervous system disorder that branches off from an even broader condition called dysautonomia. Firstly, because fibromyalgia can be a consequence of dysautonomia, we should learn what that means. Dysautonomia is a general disregulation of the autonomic and sympathetic nervous systems. The sympathetic nervous system controls everything that you have no conscious control of (eg., breathing, heart rate, body temperature, vasodilation/constriction, digestion, and much more). When the central nervous system enters a state of disregulation, chemicals become imbalanced, the signals get confused, and it becomes, more or less, stuck in the state we would call dysautonomia. Having dysautonomia may often lead to developing fibromyalgia. Now, this means that people with fibromyalgia would also have dysautonomia because this is where it stems from. Although scientists are not exactly positive about the cause of fibromyalgia, current studies point to a central sensitization component. Studies on this show that the brains of people with fibromyalgia interpret pain in a much different way than people without. The signals that are sent from our bodies are misinterpreted by the brain as pain. This does not, in any way, mean that the pain is not there, or that it is not real. The nervous system just seems to forget how to turn those pain signals off. The brains of people with fibromyalgia also show physical changes, such as shrinkage in some areas known to be correlated with pain and the perception of pain. Other studies show that the quality of sleep that fibromyalgia sufferers have is under par compared to that of someone without. Our sleep has been proven to be interrupted by awake-like periods that keep us from entering the deep, restful sleep that is needed to heal the body. Many more studies are being conducted as well. Needless to say, fibromyalgia is a real disease, with very real symptoms, that should be managed by a medical professional.

The symptoms of fibromyalgia are extremely diverse, and everyone experiences them a bit differently and to various degrees. Because it affects the central nervous system, nothing is off limits when it comes to symptoms. The most commonly known, and most prominent symptom of fibromyalgia is pain, wide spread pain. The pain of fibromyalgia is not limited to one area, or even a few areas at a time. Often, it is usually prominent, and moderately to severely painful, in many areas of the body at once, compared to the other areas, which simply ache at the same time. It is almost an indescribable pain, one that encompasses every part of your being. On the best of days, everything only aches. The pains move rapidly, or they build up after one another.  Shooting pains, stabbing pains, aching pains, throbbing pains, you name it, we get it on the daily. The second most problematic symptom for me is the extreme fatigue. Many people with fibromyalgia also have a diagnosis of chronic fatigue syndrome. This causes debilitating fatigue that makes it difficult to complete everyday tasks. This is most often caused by the lack of restorative sleep that most fibromites experience on a nightly basis. It is much different from the being tired from a long day at work. The exhaustion that people with chronic fatigue feel is far beyond the point of just tiredness, and they feel it nearly constantly. Feeling tired is only baseline for us, so when we finally complain that we are tired it means we are exhausted. Irritable bowel syndrome (IBS) is also very common in people with fibromyalgia. This often causes pain in the stomach, alternating diarrhea and constipation, and sensitivities to food among other things. Fibromyalgia is also notorious for causing headaches, frequent ones. It is linked with migraines and tension headaches, but I seem to experience a mixture of both that come and go on a daily basis, often lasting for several weeks at a time. Sensitivities to stimulation are also a huge factor in fibromyalgia. Loud or repetitive noises, bright or flashing lights, or fluorescent lights can be interpreted as pain to fibromyalgia sufferers. Large groups of people, or being around emotional stimulation too long can be over stimulating for many people with central nervous system disorders. Overstimulation often leads to more or worsening symptoms. Twitching, muscle spasms, and spasticity are common muscle symptoms. Cognitive issues such as memory problems and speech disturbances affect many, as well as depression and anxiety. Heat intolerance, cold intolerance, exertional intolerance, chemical sensitivities, rashes, dry eyes, dry mouth, dizziness, malaise, and much, much more. These are only a few of the symptoms that are experienced by people with fibromyalgia.

As you can see, there are a significant amount of symptoms associated with fibromyalgia. Because of the wide array of symptoms doctors, family, and friends are quick to dismiss the many problems as being made up or of the psychiatric nature. After it was found that between 3 and 5 million people have this same kind of story to tell, the scientific community started becoming a bit more responsive about admitting there was a basis to these complaints. There is now scientific evidence proving the validity of the disease, formerly called a syndrome. The hard part is not convincing the scientific community, nor convincing the doctor that sees you, rather the friends and family that see you most often. Fibromyalgia is considered a "invisible illness" because it cannot be detected by just looking at someone. People watch you complete everyday activities all the time, but they do not see how much pain you are in while doing them. Fibromyalgia can create a great deal of difficulty with the simplest of tasks. A person with fibromyalgia cannot push as hard as a person without or their condition can escalate into a flare. A flare is a period of time where the symptoms and pain increase considerably compared to that of that particular person's baseline level of pain, fatigue, and other symptoms. Flares can be brought on by heat, cold, stress, exertion, or illness. This makes it more difficult for others to understand or sympathize because the sufferer could be "normal" for stretches, and then all of the sudden become tired, in pain, cranky, and depressed for another long stretch. Employers, although required to make adjustments to meet the needs of the employee with fibromyalgia, often brush the person off as lazy or unreliable and are quick to replace the individual. At least 1 in every 50 people you meet has fibromyalgia, but you would never be able to tell those who do from those who don't.

Those who do have fibromyalgia typically fall into a distinct "type-A" kind of personality. They have big dreams and a lot of goals to meet. They have a "get er' done" kind of attitude about them, but they also tend to have a high amount of stress in their lives. Some point to this as the cause of their ailments, but studies have not proven it. People with fibromyalgia are strong, some of the strongest people you will ever meet. They tend to hide their pain from their loved ones and often suffer in silence. They try their best to look and feel as "normal" as possible, but often struggle at keeping up with work, kids, the household, and a social life. Friends are often cancelled on last minute because the sufferer is not feeling well or is hurting. Many people with fibromyalgia cannot hold a steady job because of the unpredictability of their illness and must rely on assistance for income. Others can work with difficulty if the work conditions are favorable enough. Either way, fibromyalgia affects everybody differently. Because their is no cure, people with fibromyalgia are expected to live the remainder of their lives in pain.

Because sufferers face the harsh realities of knowing that the rest of their life will be lived in pain, a huge number of people with fibromyalgia also are affected by depression and anxiety. Who wouldn't feel hopeless and miserable knowing that their lives are be to lived in a massive amount of pain with no end? Luckily there are a few treatments that may improve these symptoms, but there is nothing that can cure fibromyalgia. Please help us to raise awareness so that one day there might be hope for a cure.

A moment in the life...

Most people in my life have no idea that I have Fibromyalgia. I keep it to myself even when it comes to my family. I mean, my family knows, but what I actually share about it is nearly nothing compared to what goes on in my mind about it. Though they know, they cannot help but doubt me and it is no wonder why, honestly. I don't show my pain, I don't announce my suffering, I don't acknowledge the disease very often. Even when I don't talk about it, I feel it. Every minute, of every hour, of every damned day, and so on. It lives with me, permanently. I think about it so often that sometimes I obsess on it, but how could we not? We feel it, ALL THE TIME. It is there. Even when it is not full force, it is there in the back of my mind. Even when I do seam to escape the thoughts of it, there is some twinge, some shooting pain, some numbness to remind me that it is still there nagging at me for attention. No matter how many times I have tried to convince myself that I am just bat-shit crazy, like others would think of me, it still creeps its way back in and consumes me all over again. Eventually, you learn to hide it. We all learn how to hide it so well, that people just simply forget or don't understand our suffering. It can create one whirlwind of a lonely existence, really. We can't expect others to understand it because they have never lived it, and let's just face it, people are not exactly sympathetic. "Oh, you get headaches, well so do I." People without Fibromyalgia don't understand how that simple statement rips that little tear your heart has just a little deeper every time you hear it, yet anyone with Fibro understands all too well.

I have waited tables for probably 8 or 9 years now, and anybody that has been doing it for quite some time can attest to how servers should probably be paid comparable to an actor or an actress. I cannot think of anything better to teach you how to fake a smile. Your bills depend on it! Ask me how I am doing? "I'm great" Always with a smile...... Okay, most of the time. Meanwhile, I feel like I was run over by a Mac truck and inside I am thinking *Someone please put me out of my misery!!!!!!!* During flares, it gets harder to hide it. I'm desperately trying to walk like a normal person, but usually have some sort of muscle pain, spasm, or twitch keeping me from doing so. People must think I am strange; limping one day and not the next. So, I do try my best to hide my misgivings. Some days, I can hardly lift a thing, and others I feel like superwoman compared to the day before. The unpredictability of it is not practical of living a normal, productive life. I could feel fine an entire day and in one minute that could completely change, but I never know when it is going to happen....

Any given 20 minute period in the life of a Spoonie:

Suddenly, a hot flash comes on, and makes your innards feel like they are in a kiln. You start sweating and turn a shade of red that would normally only come on after intense exercise. As your wiping the dripping sweat off of your forehead, you start feeling that dizzying sensation, like you just got off the Zipper. Your stomach aches for relief and you get the odd feeling that you are going to toss your cookies. Your mouth waters and all you can think about is needing an entire bottle of ice cold water to cool yourself. Next thing you know, you are so weak you can hardly find the strength to stand. Chair, please. Sitting doesn't help. You try your best to carry on with the day as the headache sets in. That aching, throbbing, tenseness that engulfs your skull. It keeps nagging at you, distracting you. You push all this down and carry on. Then, while carrying on about as "normal" your biceps start to feel like you have just carried 150 pound barbells around for the last hour. They squeeze, and tense, and pull so hard you wonder if they are actually capable of tearing in half. "They are just plates of food for God's sake, pull yourself together!" you tell yourself. Another twinge in your stomach brings on another, yet strong, wave of nausea and dizziness reminding you yet again of the heat that is radiating around your body.  As usual, you attempt to dismiss your body's complaints as nothing. Later, going on about your business, as you pass a clipboard to someone, a shooting pain runs from the base of your neck, along a nerve, to your elbow making it feel like you just wacked your "funny bone", HARD. Out of nowhere, you drop the clipboard but pretend like it was no big thing. Just another day you think, just another reminder.

So, if you are reading this and think that someone you know may be faking their Fibromyalgia, well, they probably are. They are faking being okay, they are faking being not in pain, they ARE faking it, just not in the way you expected. It is all a show. We hide it for ourselves, so we can look as "normal" as possible, so we can try to get through our day, so we don't sound like complainers, so we don't aggravate others, and so we don't have to hear "Oh, I get tired sometimes too" one more freaking time. We hide it for ourselves, yes, but mostly, we hide it for you. We hide it just so you never find out exactly how much we are really suffering, how much pain we are in, or how close we are to the breaking point. Why share the pain and suffering? Why put those we love in pain because we are?  God knows that hearing about our pain hurts the ones that love us. We hide it to protect ourselves and others. And we are damn good at it too.

Please, I ask, don't discount my pain.

If this isn't the poster-song for Fibromyalgia, then I don't know what is.

 

Linkin Park -  Crawling

 

Crawling in my skin
These wounds, they will not heal
Fear is how I fall
Confusing what is real

There's something inside me that pulls beneath the surface
Consuming, confusing
This lack of self control I fear is never ending
Controlling

I can't seem
To find myself again
My walls are closing in
(Without a sense of confidence I'm convinced that there's just too much pressure to take)
I felt this way before
So insecure

[Chorus]

Discomfort, endlessly has pulled itself upon me
Distracting, reacting
Against my will I stand beside my own reflection
It's haunting how I can't seem...

To find myself again
My walls are closing in
(Without a sense of confidence I'm convinced that there's just too much pressure to take)
I felt this way before
So insecure

[Chorus] (Repeat until end)

There's something inside me that pulls beneath the surface
Consuming, confusing
This lack of self control I fear is never ending
Controlling (Whispered during chorus)

Courtesy of  http://www.lyrics.com/crawling-lyrics-linkin-park.html#VghgA9mKmBc2cADR.99