Most people think Fibromyalgia/ Chronic Fatigue Syndrome is just pain and just severe tiredness. That is so far from the truth as fibro / CFS is so much more than pain and fatigue. These two symptoms are but a very small part of these conditions. So just what is this….. this relentless force which runs the lives of people with Fibromyalgia and Chronic Fatigue Syndrome?

• PAIN:Obviously pain is the number one symptom of fibromyalgia. Pain can be in certain areas, or is (usually) widespread. Nonetheless, where there is fibro, there is pain. It is not the only symptom of fibromyalgia. It is just the beginning.
• IRRITABLE BOWEL SYNDROME: IBS has to be the most frustrating of the side effects of fibro. To put it in a delicate way, many of us have to ‘manually steer’ our guts. We load up on Imodium when things are going too well and get the softeners going when things get backed up. For me, these days, rarely do things go smoothly on ‘their own’. Now I am not trying to be gross or give TMI, however, this is the reality of things and if I am going to be open and honest, I feel I would be doing a great disservice to leave this out.
• CHRONIC SORE THROAT / HOARSENESS: While my throat is not sore all the time, nothing screams “flare” like a scratchy throat! I do get these often….. especially when I am run down. To add to that, I seem to have an eternal hoarse voice and from a girl that not only has never smoked a day in her life but also has a severe nicotine allergy, I cannot be accused of ‘lighting up’. I don’t and couldn’t even if I wanted to partake in that deadly habit. No, it is the fibro and it is why I had to stop singing. You will find me saying ‘Fibro took ‘this’, ‘this’ and ‘this’ from me’…. one of them being my singing. Singing…. whether it being in choir in church or community theater was a passion. My passions have shifted because they had to, in part!
• PARESTHESIA:  a sensation of tickling, tingling, burning, pricking, or numbness of a person’s skin……also known as the feeling of “pins and needles” or of a limb “falling asleep” is another oh so ‘fun’ effect of fibro. My hands are in constant 24/7 ‘pins and needles’ which is also aggravated by the (tangible) severe stenosis in my neck. The two sort of collide like a great, sticky mess of a train wreck.
• PAINFUL / SWOLLEN LYMPH NODES: Again, this screams, FLARE! If my lymph nodes are doing anything funky, I know I am pushing too hard and am going into flare mode or getting sick. My lymph nodes and throat (getting sore) are my best indicators of when I am heading for a flare.
• THYROID ISSUES: (Theory Alert!…. remember, I am collecting theories for a later post). About the thyroid. I do not know why, but most every single person I know that has fibro also has issues with their thyroid. Now this may be a chicken/egg scenario, I do not know. Nonetheless, I do know that the thyroid seems to be a common denominator in fibro issues. 
•  SLEEP DISORDER: I am typing this at 5 20 AM and have been up since 3 AM. Last night my husband came in from his 2nd job and found me sitting up on the couch with my uneaten dinner on my lap, sound asleep. A few nights ago, I fell asleep on the couch at 8 PM and had (broken) sleep until 8 AM the next morning, and some nights I get 2 hours sleep. Some nights I get no sleep. I nap most days….. sometimes I nap an hour, other times I have napped up to 4 hours. There is nothing normal or regular about the way or places I sleep. When I do sleep in bed from a somewhat normal time, I sleep just like a baby….. up every two hours. As I stated in my “Day In A Life” post, it is very difficult to pin point a beginning to my day as  it sort of just loops round and round like Pink Floyd’s, “The Wall” CD. And then, to top it off, there is the recurring nightmare. To say my sleep issues mirror every other fibro patients would be totally wrong. All the same, the one thing most of us share is we do have challenges related to getting normal and uninterrupted sleep.

•  CHRONIC HEADACHES: This is by far one of the most common and shared complaints of fibro sufferers. Headaches in general are a common symptom in the society we live in and have different causes from hormones, stress, foods, sinus issues, etc. The thing about headaches with fibro is that the person is already in a substantial amount of discomfort. In many cases the fibro patient gets migraines and most everyone knows a migraine will take you ‘down’ in no time flat. Topomax is a good migraine prevention medication and Maxalt or Imitrex are good migraine meds once the headache starts. Maxalt works best for me and contrary to what some choose to believe, these meds are not pain meds, but rather go directly to the constricted blood vessels and cause them to open up.
• DEPRESSION / ANXIETY: If you hurt all the time, wouldn’t you be down? If you were judged, ridiculed and told your illness was non-existent at times, wouldn’t you feel pretty sad? If your life was run by a force so deep…. so powerful….. so unknown yet so volatile, wouldn’t you be anxious? Now add the chemicals in your brain being a bit off kilter because the chemical called serotonin was not quite being in sequence. Most people with fibromyalgia suffer from clinical depression. That is one reason Savella (an anti-depressant) has been approved by the FDA as one of the first drugs besides Lyrica to be used as a treatment for the treatment of fibromyalgia.
• NAUSEA: This is one of my least favorite side effects of fibro. Being post RNY also, I have ‘double whammy’ when it comes to my stomach and therefore always have anti-nausea medication nearby. I am not good when it comes to nausea and you can count me out in most things if I get an upset tummy so this is one area I have to be very careful about. For those of us with fibro, it is like dancing on hot coals….. especially those of us that have IBS
• HEAT / COLD INTOLERANCE / PHOTOSENSITIVITY / SENSITIVITY/ TINNITUS/ CHILLS: And so much more can be grouped into ‘Sensory Overload’ ….. which I of course did an entire Blog Post on a few posts ago. Sensory Overload is just that…. everything from taste, smell, touch, sight, feel…. everything is amplified, enhanced and heightened to uncomfortable levels. Cinnamon is nice, but not if it gives you a headache. Sugar tastes good until it makes you sick. Fur feels good unless there are burrs in it that stick you. Daylight is glorious unless the light is so bright it gives you a headache or makes you just feel ill. You will always find me wearing sunglasses…. even on the cloudiest of days. Nothing is good in extreme and with progressive fibro, sensory overload is paramount and it is one of the most frustrating of symptoms. You have super-human senses with the energy of a cell phone with 1/2 a bar of coverage.

There are many more side effects I could cover…. tachycardia, restless leg syndrome (I do not have that, but many do), shortness of breath (made worse by asthma in my case), vision problems, disequilibrium (I am the clumsiest person you will ever meet!), swelling (Lacex is my friend!), acid reflux, weight gain (too depressing to even talk about) 🙁 , light-headedness, hypoglycemia, difficulty swallowing (which can be quite alarming!!!!!), and anything / everything else you could imagine. Fibromyalgia is a cruel, evil, ugly …. pardon my language here, but there just is no other word….. bitch. She has no mercy and the saddest part of all? The stigma we carry by others. I have mentioned before how I was so harshly pre-judged a few years ago because my stomach….. getting ready for a trip abroad. Not too long after that, I had an intestinal perforation. I almost died! Because of my very limited ability to eat and severe sensory overload, I was ….. well, scared! I was going into the unknown, across the ocean. Someone decided…. based on that….. never taking the severity of my illness (even in the future knowing about my serious surgery, etc) into consideration. I never asked for special favors and anything anyone did for me was their decision and their decision alone and they were told with very sincere appreciation how grateful we were that they went to any trouble…. though not necessary. The point is, this is a perfect example of how one person used and still, to this day, uses fibro to judge me. Other ways? Being left out and not included because people do not think I can ‘do this’ or ‘do that’. As I have posted, I will be extremely honest. If I am not up to doing something, I will be the first person to say so! These ‘side effects’ are just as soul-crushing as anything physical. Remember, we with fibro / CFS…. we want our life to be as normal as possible. I enjoy ‘doing’ for others. Or trying to anyway…. sometimes that can backfire one me when I try…. but my heart is always in the right place. 🙁  So call that loved one in your life today who is suffering and invite them for lunch , tea, shopping, etc! Give a hug to the person in your life with chronic pain! We want to live, love and give too………. just as much as everyone else!  And remember, Fibromyalgia Awareness Day is coming up on May 12, 2013! Do something….. anything…. no matter how small; a text, a card, a call, even a short e mail to the fibro friend in your life on May 12th just to let them know you care! 🙂 Until next time, K.

http://www.youtube.com/watch?v=4Bl-pLG7_5E              

“Woke up, fell out of bed
Dragged a comb across my head
Found my way downstairs and drank a cup
And looking up, I noticed I was late
Found my coat and grabbed my hat
Made the bus in seconds flat” 
Most people can relate to the song. Even though it is decades old by one of the greatest rock bands ever, even in the 1960’s, people were pushing the envelope of the alarm clock, rushing about in the morning to get to work and punching that time clock to earn their wage. Most, like the rest of us, just wanted to grab a bit of happiness along the way. People with chronic pain and fatigue are no different. The biggest difference between us and them is everything; from rise to sleep takes tremendous effort. Things that most people do on autopilot, for many of us with chronic pain and relentless fatigue fight battles that would put Godzilla in a fetal position. So I decided to let you in on a day in the life of a person with chronic pain and chronic fatigue. I will present two scenarios; the tolerable day (I will not give the golden ‘good’ day, I only get about 5-7 good days a year…. they are precious, rare gems) and bad days which I get anywhere from 2-5 bad days a week depending on whether I am in a fibro-flare or not. I was in a horrible flare last week, for instance, so everyday was  pretty bad. This week seems to be starting on the same note.

It is difficult to even know where to begin ‘my day’ because I am usually so racked with unstable sleep patterns….. bouts of terrible insomnia followed by days of 3 and 4 hour naps we fibro patients label ‘crash and burns’ that like Pink Floyds  album “The Wall”…. it has no beginning and end….. it is just loops. Nonetheless, there has to be a starting point. Since I have been getting to bed at some point in the night/morning for at least a few hours (of bed sleep)… on a regular basis for the last several weeks….. I will start with getting up in the morning and go from there. I will describe a pain level 7 day…. tolerable and level 81/2-10 day which is bad. I usually am about 50/50.  So here it is ….. a day in the life.

• RISE AND SHINE:
  Getting up for me is a process. I don’t just ‘get up’ or ‘hop out of bed’. Morning stiffness is paramount with most progressive fibro patients and probably one of my top pain issues. For me it usually goes one of two ways: on a tolerable day I begin by removing my cat from me as he loves to sleep nuzzled next to or on my legs. It is ok, I already hurt so bad that having him nuzzle next to me is actually comforting. When I am ready to get out of bed I assess my pain level and begin with a slight stretch in bed. If I am at a tolerable 7 I can usually roll over and gently push myself to my feet. Once I do this, for the next 10-15 minutes I hobble about like an eighty year old would (sometimes using my cane depending on how steady on my feet I feel). Imagine walking bare-footed over rocks. On a bad pain level 10 day, I generally have to roll down, knees on the floor (being Catholic gave me years of practice for this) and get in the kneel position. Once I am in the kneel position I stay for a few seconds to get my bearings and slowly push myself to my feet and am hunched over like a woman of 100 years old. Many of these days, I just have to call Paul to come help me out of bed. If it is that bad, I literally cannot get out of bed without help. And that is very frightening. Now, insert a slight limp. It is documented on numerous medical records that I walk with a gait (limp) and I never knew this until Paul confirmed it

• MY DAY: Once up, I hobble to make coffee and get my hard working husband off to work. I will say, however, if I am having a bad patch… pain level 9-10…. he will get his own breakfast and make his own lunch. He is amazing with my illness…. the most amazing person in my life. Many of the people in my life do not even acknowledge its existence. While I certainly am not a drama queen and never complain/ vent to anyone except Paul (who knows I am just venting) and to my friends in pain on Face Book (for which we have closed groups for the very purpose of having a safe place to vent), it would be nice to be acknowledged once in a while that I am not normal; I am handicapped and even the most simple things such as going to church (which I have missed for weeks) is a devastating absence in my life. While people telling me to watch the sermon online is appreciated, I do not think people understand…. I miss the fellowship, the music, the laying of hands, the praise…… just being with other people who care! A box with the preacher is all fine and good, but nothing takes the place of the fellowship. Nothing can stand in place of that human touch and compassion.

• ROUTINE:
  Days go two ways: Staying home and going out. When I stay home I try to tackle as many chores as possible; dishes, laundry, tidying the house and sometimes a bit of ironing. On a tolerable day, I am doing good to keep the laundry topped off…. you would be amazed at how much laundry just two people generate. I do my best to keep the kitchen clean and cook dinner. I always say, if I can keep the laundry up, keep the kitchen clean and cook a simple dinner, I am proud of those accomplishments. Many people with the pain level I carry would be bedridden…. and bear in mind, I am on medication and still at this pain level (only below a level 7 less than one week a year). On a bad day, the laundry can keep and Paul will cook dinner. Now I make it a rule, the TV does not come on until my one daily guilty pleasure, “General Hospital” and then it is turned off again. I may be disabled of body, but I refuse to let my mind turn into a muddled wasteland of daytime television. I surf on the computer….. going on Face Book, check the local news, Pinterest, etc. Notwithstanding, I require myself to have focus and even if my energy is down (which a lot of the time it is), I will turn to a direction I can go without risking further pain or physical fatigue; One of two of my top passions, writing. That is why this blog post is here…. as I often say, if I can just reach or help one person a day with fibromyalgia or help one person understand it better, I have made a difference. I would love to become published someday, so I do take the advice of the published authors I know: write everyday; even if it is just 15 minutes. However, if I do not become a paid, published author in my lifetime, I love writing and fibromyalgia education is my mission! So a tolerable day: staying in and doing as many chores as I can manage, getting some writing in and cooking dinner. If I have a Doctor appointment or errands, they are carefully planned, and the only thing I do that day. Some days I get two or three things accomplished and for me, that is a successful day. For most people, that is nothing…. just a start…. a couple checks off a list. For me, that is a triumph. I think the best way to put it is this: Every thing that a person who does not suffer from chronic pain does…. from making coffee to doing dishes; from going to the store for a few items to going to the craft store to pick up scrapbook tape; from simply doing a load of laundry to just tidying up a bit to even going to work, something my Doctor…. along with the backing of each of my specialists determined was best for me… disabled me out of three years ago (and I am still fighting to get my benefits)….. every single thing with the exception of breathing takes double to triple the effort that it would for a normal person. Also, it is very important, on most days that I get some sort of a nap…. even if it is just for an hour. If I do not nap and put off naps day after day, I will crash and burn and sleep 12-16 hours straight.        There is nothing in this world that is simple for me. Nothing. Also bear in mind: besides pain and fatigue, I deal with severe IBS, brain fog, chronic migraines, chronic nausea, depression, anxiety, sensory overload and numerous other (fibromyalgia) side effects. I also have a laundry list of tangible issues with my neck. My body is …. well, pretty much a train wreck. Towards the end of last week my gut was in a complete tailspin with my IBS being out of control. I took 24 Imodium and an entire bottle of Kaopectate in a three day period. As so often happens, we had to miss an event that we were looking forward to…. the annual kite festival. It is a festival put on once a year that is what it says…. a bunch of people flying kites of all shapes and sizes. However, it is free, it is in spring with the nice mild weather and it is just the right length of time to get out and enjoy the sights, sounds and feel of the season without over exerting myself. Yet, as so often happens, my body dictated to me: no going anywhere until I get this gut calmed down.  I say this not to get any sympathy…. I do not want sympathy….. I say this to educate people what life with fibromyalgia can entail.  Suicide rates among people with chronic pain is high and back when Dr. Kevorkian was in business he assisted in the deaths of several women with fibromyalgia. According to thirdage.com, “The suicide rate for people with chronic pain conditions is two to three times higher than the population as a whole.”

  “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Radmacher

• ERRANDS / SHOPPING/ APPOINTMENTS: Errands, shopping and Doctor appointments pose their own challenge. If I am in a flare….. like I am as I write this…… I will do the bare minimum. A few days ago serves as a good example. I had a 15 minute Doctor appointment in which Paul accompanied me. I then had to run to the store to pick up a few items. Dinner was leftovers so it just needed re-heating. I was shattered and fell asleep on the couch shortly after 8PM. I slept the entire night (with my normal waking every 1-2 hours as I always do). In total, I slept about 12 hours (broken sleep). For me that is a crash and burn. My body ‘turns off’ and forces itself to re-boot. Though I felt a bit better rested the next day, I still felt like I was the pinata at the receiving end of a gaggle of five year old children. The one I feel for most is Paul. When I have these flares and crash and burn, he has a wife that is out cold by 8 PM. That is not a fun evening after a long day at work. When I go to the store I often have a difficult time finding a disabled space that is available. Once I have done my shopping, I leave the non perishable, heavy items for Paul to bring up. Struggle; each and every little minute detail of my day can be a struggle. Paul always assists me with big shopping trips.

•  NIGHT: Nights are bittersweet. After spending a day with only the cats to talk to or doing everything from cooking to laundry…. from shopping to a simple Doctor appointment as if there were a 100 lb ball chained to my ankle, I so look forward to my wonderful husband coming home. If the day is at a tolerable level, I have been able to prepare dinner. We have our dinner and, like most people, settle in for a night to watch some of our favorite TV shows. On the flip side, nights can be my worst enemy. Night time also means bedtime and for me I do not get up and go to bed like normal people. If I am able to fall asleep… and I say if because I am presenting this scenario from the standpoint of a tolerable pain level day in which *each and every night* Paul rubs my shoulders, arms and feet (reflexology) to help me relax. I often say, he is my favorite medication. So 99.9% of the time I fall asleep on the couch. It is what it is and I am trying to get to a point where I can get up, go to bed and fall asleep in bed. For me many of these goals are baby steps. In any event, the first time I fall asleep at night is just the beginning of my night 90% of the time.

If I am able to remain in bed, I wake up every one to two hours, without fail. If you have ever been to a very hot place…. imagine this place. Not just a hot place, I mean HOT…. as HOT as it gets. I am from Bakersfield, California and the hottest temperature I can recall feeling is 117 degrees F. however, after 105 degrees F. it all feels the same. When the sun settles in this really hot place the earth still radiates with the heat of the day. It is kind of a throb…. a sort of rhythm one can feel. That is what it is like for someone with fibromyalgia laying down at days end; our body throbs, bump, bump, bump with pain. It radiates outward to the point you are certain it can be felt by your spouse/partner. Many times I am up and down. If you have had a surgery or been in pain or had a bad cold, you know what it is like to be unable to sleep properly because of pain/discomfort. For us, this is nearly an every night occurrence.

If I have a bad headache or neck pain is flaring for any reason, I usually ‘sleep’ sitting up with a neck support pillow. This type of sleep is more of a twilight sleep, but any rest is better than no rest. In the case of insomnia….. where pain is so intense I am unable to sleep at all…… this is the worst night of all. Nights are the longest and loneliest when pain levels are high and sleep is nowhere to be found. I must remain quiet as not to disturb my husband…. a man working two jobs, without complaint. If it is the weekend I will generally be able to find something on television that is interesting but if it is during the week I do not even bother. I surf the net, write…. if I am feeling able to retain anything I read, I will go ahead and read whether online or a book. Usually, however, brain fog is high when I am tired and unable to sleep because of pain so I don’t even bother trying to read…. knowing anything I read will all be lost as soon as the words are read.

MANY TIMES WHEN OVERWHELMED WITH INSOMNIA, A PERSON IN PAIN WILL STAY UP AND SURF THE WEB OR WATCH TV. MANY TIMES YOUR LOVED ONES WILL FIND YOU ASLEEP OVER THE COMPUTER OR IN OTHER INTERESTING POSITIONS

The other thing that plagues me….. and this is not a fibro thing but does add difficulty to my sleeping problem……… is my recurring nightmare. This is very personal to me and quite dark. All the same, I feel it is necessary to mention it to give the reader an over-all view of my ‘day’. It generally occurs about 5 AM. I have tried to hide from it, miss it, lose it, trick it and everything else I can think of. It always finds me. If I pull an ‘all-nighter’ with pain induced insomnia, it finds me If I am able to get a nap or the next night, and it is generally more creepy and a lot more disturbing. So trying to trick this nightmare or displace it is futile. I do not know when or if this nightmare will cease so for now, it is just something I must accept.

TRYING TO TRICK MY RECURRING NIGHTMARE IS FUTILE AND ACTUALLY MORE TRAUMATIC. THE BEST THING TO DO IS LET IT RUN ITS EVERY 24 HOUR CYCLE

Then the morning comes and my ‘process’ of getting up/ crawling to an upright position and it starts all over again.

I cannot speak for any other or even a percentage of other fibro patients. We do, nonetheless, have many things in common…. morning stiffness, pain, fatigue, sensory overload, insomnia and so much more. So I think looking at my life as a disabled person with advanced fibromyalgia, Chronic Fatigue Syndrome, a load of ‘tangible’ issues with my neck and a host of issues like IBS, migraines, insomnia, etc related to the fibro, I think a day in my life is a fair overview of a day in the life of someone with fibro. As bad as it all sounds, I am not miserable and full of woe. Sure, I wish I did not have this monster to deal with. I would love to have the energy that matches my soul and passion, but it is the hand I was dealt. I have an amazing husband, beautiful children, a perfect Granddaughter who is the center of my universe and a Grandson coming in September who is the co-center of my universe! I have an amazing Uncle and though he is in California, he has served to be a tremendous support and second Father to me. I am not an unhappy person. Frustrated a lot of the time? Yes. Unhappy? No.

WHAT WE WANT: We want to be treated like anyone else you know. We do not want you to assume we ‘cannot go’ somewhere, ‘cannot babysit’, etc because we are in pain. A lot of time doing the very things people think was ‘cannot do’ or will ‘aggravate us’ are the very things that deflect our attention away from the overwhelming things that are happening in our body. We know what we can and cannot do…. let us be the judge of whether we are ‘up to doing something’…. we will let you know if it is too much for us. I often feel very forgotten and left out because other people do not ask me to go places/ do things/ help them out because of my illness. This is so far from what I want. We want our illness acknowledged and one of the biggest things someone can do to us is act like fibro is ‘over – exaggerated’ or ‘in our head’, etc. That is hurtful and so wrong. Trust me, someday the very people thinking/ saying/ acting out these things may be the very people who understand the very best.

WHAT WE DO NOT WANT: We do not want to be left out, forgotten and treated like freaks. Believe me, I already feel like enough of a freak…. with this monster that even my husband upon seeing the number it has done on my gut the last several days, “You are such a colorful, alive person…. I HATE what this thing does to you. I hate it… it just sucks the life out of you.” And it does. Every Medical Doctor worth seeing now will tell you fibromyalgia is very real. They may not fully understand it…. and (remember, I said I am gathering theories here… so take note, another theory for a later post)…. it is being shifted to a neurological disorder now over a muscular disorder. So the nicest thing you can do for the fibro patient in your life? Love them and include them…. unconditionally. I am speaking for myself here, but I am sure other fibro patients will agree….. I feel all the time that I am living life from the sidelines. I feel so very left out of so very many things. It would be nice to be included just once in a while in things with family and friends. I often feel like “FIBRO FREAK GIRL” because I am… well, a slave to this disorder. It is not my fault and I certainly did not ask for this hand I was dealt. If you ask us along, or to house sit, baby sit, dog sit or to help…… we with fibro will let you know if it is too much for us at that particular time. 

Those of us with fibromyalgia need to be included, acknowledged, accepted and LOVED……. not just tolerated.  Until next time, K.

******This post is dedicated to the memory of my Dad, Gary Coleman, 1940-2007. I now understand that though you made mistakes and I was upset about those mistakes for a while….. as a parent who has made my share of mistakes, I understand! We are parents, but we are people and as people, we are imperfect. You loved me and you also not only acknowledged my fibro, you but you cared about my health and pain! I also now understand that your pain and health really did prevent you in your last few years from coming to visit. It is OK! I understand now. And one thing is for sure, your dance on this earth was too short.

http://www.youtube.com/watch?v=gjZQyWG6z3o

Oh very young
What will you leave us this time?
You’re only dancing on this earth for a short while
Will you carry the words of love with you?
Will you ride the great white bird into heaven?
And though you want to last forever
You know you never will
You know you never will
And the goodbye makes the journey harder still

MY DADDY AND ME WHEN I WAS ABOUT TWO YEARS OLD. IF I COULD ONLY TURN BACK THE CLOCK, THE THINGS I WOULD DO SO DIFFERENTLY. MY DAD’S DANCE ON THIS EARTH WAS NOT NEARLY LONG ENOUGH, BUT WHAT AN IMPACT HE MADE! I STILL MISS YOU DAD, EVERY SINGLE DAY!

As I have gotten older, my skin has taken on more of an olive complexion like my Mother.  My Father, on the other hand, could snow blind a person if they stared at his long, flamingo like legs long enough. Now I did get the long flamingo legs and when I was a child though not as snow white fair, I was much more prone to getting sun burnt then I am now. Growing up in Southern California, with a once a year trip to Pismo Beach….. along with numerous weekend trips and occasional spring break getaways….. I got more than my fill of sun burns.

So what does a sunburn and fibromyalgia have in common? Sensory overload. The best way I can describe what sensory overload is like for a fibro patient is to say it is like your senses have a bad sunburn. First let me tell you, from personal experience, what hell it is going through life as….. my husband Paul puts it….. with ‘super human senses’ without any sort of boost in stamina or strength. In fact if anything just the opposite is true.It is like having Superman senses with the energy of a cell phone on that last single bar before it poops out on you.

The best way to describe sensory overload in a simple way is to say everything is amplified. Every sound, taste, temperature, texture, light, odor and even the smallest thing that is not as it should be…. something that would not be noticed by the average person….. can be overwhelming to someone with fibro because of this strange and recently noticed quirk of this condition.

• SOUNDS: Paul and I have a ritual each morning. Now Paul has  a small touch of TMJ so his jaw slightly clicks when he eats. Most people would not even begin to notice this slight click. But to me it is as if someone has a little ‘clicker’ right at my ear, with a mega-phone, and is clicking away at the rate someone can eat cereal. Then, of course, there is the crunch of the cereal.  So our ritual is (him knowing and respecting it is me and not him) that we get some music going if it is not already on. I can also hear the neighbors….. I could even hear the last one below us snore (though in all fairness Paul could too at times). The worst is the night. When the insomnia is in full speed, the silence of the night is so loud. There is no silence for me. My silence is like a loud, high pitched, buzzing that never goes away. Basically, my silence is a loud, shrilling form of tinnitus. http://en.wikipedia.org/wiki/Tinnitus . Some say silence is golden…. I say silence is hell. For those that have had a chance to see a harrier jet in person, you will know those babies are loud! Before leaving my home state of California, we used to frequent air shows …. love them! What a rush! I saw this beauty of a jet…. and heard it. YIKES! (It was also featured in the movie “True Lies” with Arnold Schwarzenegger). The harrier can land and take off (almost) like a helicopter. It needs almost no runway. If I had then, what I have now as far as sensory overload, I would have bolted. Now, seeing the harrier would be unbearable. The other thing is balloons. Or should I say popping balloons. Now I am rounding up theories here, so pay attention, because in a few months I am going to take these theories and make a post out of them. Also pay attention to this statement very closely: I have always hated popping balloons. More than that,  the tins you get with cinnamon rolls, pizza dough, etc that you unroll the paper and they “POP!”, I have always been scared witless of those and do not open them unless I have to. Champagne corks, firecrackers and even the 4th of July fireworks turn me into jello! My Dad used to tell me about the time I was a young child and they took me to the fireworks display at Bakersfield College. We had to leave shortly into it…… I could not take the loud popping of the fireworks.

• TASTE: Being from California where real Mexican food comes from, I love my ethnic cuisine. While I have never been a huge fan of overly spicy food, I was always one to like a bit of a kick to my food. Not anymore. Even the smallest amount of heat….. as in spicy heat….. ruins food for me. I just cannot take it. Foods that the average person would not consider spicy or maybe mild spicy, I consider three-alarm, off the charts spicy. Having to re-order food at eating establishments on more than one occasion (that the server has claimed are not spicy), I have learned to steer clear of anything that has the slightest description of even a hint of spice. I believe my taste buds are probably the most sensitive part of my body. Talk about sensory overload, there is just no adequate way to describe the way my taste buds react to food. Paul has become a big help in this department…… knowing if a dish would suit me or not. It was not always this way, but he has learned. He is almost as good at knowing what will suit me as I am. A good example is Totino’s pizza rolls….. the supreme flavor (with meat)…. they are too zesty for me. For most, they would not be hot at all, for me, I cannot take the seasoning.
• TEXTURES: As a kid growing up in sunny California, I went around bare footed nine months out of the year. Running with my friends on the 800 block of Woodrow Ave in the Oildale area of Bakersfield playing tag, riding bikes, playing hop-scotch,  double-dutch jump rope and hide-and-go-seek 90% of the time I was bare footed. I stepped on 100 degree pavement, stones, burrs in the grass and everything else one might imagine. It did not faze me. I was never overly picky about the texture of my clothing or coats and gloves. My Great-Aunt would knit me winter scarves, hats and gloves and they came in various widths and textures. There was never an issue with any of these warm delights. As an adult, the only thing I was opposed to was ‘itchy sweaters’ and was never a fan of silk. Other than that, I was never fussy….. at least until my fibro took such a bad turn. When my senses got turned up to full blast, it was as if the receptors in my skin could feel every fiber in the clothing I would wear. Every glove, scarf, shirt, pants, sleep garments, socks, sandals, etc. I can no longer go bare-footed. I must even wear flip flops in the house because of the carpet fibers. It is like clothing touching skin when it is sun-burnt…… only it is the nerve endings. So I guess one could say you have ‘sun-burnt nerve endings’.

•  SIGHT: “I’ve got sunshine on a cloudy day. When it’s cold outside, I’ve go the month of May…..”. Awwww…. I love that song; who doesn’t? It is, nonetheless, true for me. I have sunshine even on cloudy days. You will find me sporting my ‘Audrey Hepburn finest sunglasses’  most every day. Howbeit, it is not to look like a cool chick! No, it is because even in the dimmest of light my eyes are very sensitive to sunshine and all bright light. I also have issues with strobe lights, overbearing colors, etc.

• TEMPERATURE SENSITIVITY: This one speaks for itself. I cannot stand cold water. I do not get into the pool until we get our first good heat wave and the water temperature is well above 85 degrees Fahrenheit. Likewise extreme cold days as well as extreme hot, humid days absolutely shatter me. Growing up in the hot, dry desert of Bakersfield, I can bear 110 degrees at 10% humidity more than I can 85 degrees at 90% humidity any day! On the flip side cold is the absolute worst enemy of a fibro patient.

• ODORS: This is perhaps the most frustrating of all the senses that get ‘overloaded’….. especially with secondary conditions such as asthma and a severe nicotine allergy. For someone with such bad sinuses, I have the nose of a bloodhound. Bad odors can flatten me with nausea in seconds flat. I am often saying to Paul, “Do you smell_______?”. Many times he does not…. but some times he does. When we moved to town from living in the country, after my youngest daughter graduated from High School (I lived close to her Dad’s house to make it easy for her to go from house to house), we moved right above an elderly couple…. that had oxygen vented into their apartment…… and were virtual chain smokers. Because they had the oxygen vented into their apartment, they had to smoke on their balcony. They went in and out, in and out, in and out…. every 15-30 minutes from 6 AM until 10 PM at night. The management could not do anything about it because they were ‘free to smoke on their balcony’ and the man was extremely confrontational. They knew they were killing themselves (the ambulance came to get one or the other on more than one occasion the times we saw) but they did not care….. and the man said so! They loved their smokes and made no bones about it!  We were prisoners of our home the first year…. unable to open our window except for the one week they went on vacation. I was never so happy to see two people move. This issue, in part, actually caused someone to dislike me before they ever knew me. I won’t go into what happened or who the person was that decided they did not like me before they ever met me. I was, nonetheless, a victim of prejudgement. It also caused that person the loss of respect of myself as well as my husband….. something that says a lot. Having sensory overload makes you so vulnerable  physically, it opens you up to even more criticism than just having fibromyalgia alone does. One good way of putting it is: when you have all the crap going on involved with sensory overload; it is like you are a porcupine with your skin inside out!

Though each of the senses I described get overloaded, much of the time a fibro sufferer just feels like they are completely overwhelmed…. especially in a place where there is a lot of people, it is loud, there are a lot of bright lights or they are in a stressful/ nervous situation. It is much like that cliched part of every movie where the main character gets overwhelmed….. the music swells to a great dramatic suspense….. and the character bolts out of the room in heated anxiety! For a fibro sensory overload, that is exactly what a overload panic attack is like. You just cannot take it and you bolt. Since this is a recently ‘stumbled upon’ subject….. or should I say the elephant in the room that fibro patients are finally talking about (because we have enough stigmas with our condition as it is), the experts say removing yourself when you get overloaded is exactly the right thing to do! In fact to prevent overload, experts suggest patients that know they are going to a big event or situation that may cause overload adequately rest, mentally prepare and make sure they are ready to face whatever it is that may cause the overload. If there is a situation that you know will likely cause overload, the best course of action may be just to avoid it altogether.

Fibromyalgia comes with a bucket load of symptoms and annoyances. Though sensory overload is newly acknowledged, it has always been a part of the many struggles for the fibro patient. As if all the other difficulties of fibro, including the stigma attached are not enough, sensory overload is another obstacle to deal with. However, recognizing its existence, planning accordingly and removing yourself when things get overwhelming can help cope with this frustration. Until next time, K.