Sensory Overload!!!!! AKA The Sunburnt Senses Of Fibromyalgia

 

 

 

 

 

 

 

 

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.

 

4 thoughts on “Sensory Overload!!!!! AKA The Sunburnt Senses Of Fibromyalgia

  1. Thank you for your blog. I am reading it for the first time. I’ve had fibro for years. I was “stable” for years until December when I seemed to have developed a permanent flare. I have unbearable abdominal neuralgia. It caused me to lose over 30 lbs in two months. My PCP prescribed seroquel which seemed to help for a while, but the pain came back worse than ever. On a scale of 1-10, sometimes it is an 11. I have thrown up bile several times due to the pain.
    Please can you tell me what to do next? I made an appt. with a neurologist but not even sure he treats abdominal neuralgia. The nurse told the scheduling director that the neurologist treats “anything related to nerves in abdomen.” So I guess that means he will see me. But what should I expect?

    I’m wondering what doctors you are under the care of? I have sever constipation & after years of prescription laxative, I am unable to have BM on my own. I can’t use laxatives anymore due to awful bloating. THe only way I can have BM is with water enema.

    I cry all the time. The numbness in my legs & feet is much worse. I have very large lipomas on both outer thighs (they are fleshy, not hard & extend all the way to my knee) which are very painful. I’m told I can’t have them removed??!

    I have suicidal ideation every day. I made a half-hearted attempt in Dec. I am a Medicaid patient & am having difficulty finding a therapist. I need someone to talk to so I don’t burden the few friends I have.

    Sorry. I probably should have commented on what you, the blogger, wrote. I’m just rambling on. I am single & do not have a support situation except for some friends on Facebook.

    Thanks for “listening.” 🙂

    • Wana, 1st thank you so much for taking the time to read and comment on my blog! I am so glad you have found it helpful. I must say I am not a medical professional and must add that any advice I give is not medical advice but simply advice of the heart and of the ‘school of hard knocks’. So by offering advice it is on a ‘simply what I would do if I were in this situation’. As long as you understand that, I am happy to tell you what “I would do if I were you.”. First, you poor, poor dear. Throwing up bile means there is nothing left in your stomach…. and you are nearing ‘dry heaves’ and that is beyond miserable. I think the best place to start is with your general/ family practitioner and let him/her go from there. I understand the issue with the IBS; I often have to ‘drive’ my own myself. If I go too far one way, I have to compensate and go the other way. It is quite miserable. It sounds to me like you need several specialist….. a gastro specialist for the stomach issues; a neurologist to see what is going on with the pain and then a pain management to get you some good pain control (to work in partnership)…. again, all this being just my opinion and my own experience. But again, I would start with a good FAMILY or GENERAL Doctor to get you to the right specialist. I do not think just one can handle all these issues. Bear in mind also, that if you are hurting bad enough, that alone can make you sick. And of course you cry all the time and have depression. If I was that sick, I would be depressed too! You poor dear. Please get to your Doctor and let them know you need help *right away*. Print out what you wrote and my response if you need to and even go through the emergency room if you need to. There have been a few times I have gone through the emergency room saying, “I DO NOT want drugs, I want HELP and am not leaving until I get that help” so they know I am serious. Either way, you do need to seek and get that help soon because if you are that sick on your stomach they can give you something for that too to at least give you relief to make you comfortable there. Again, I am not a Doctor and everything I have said have been my experiences and opinions as a patient with FMS and CFS. Keep me posted and let me know what happens! Good luck and God Bless. K.

  2. Just found your blog, scrolling thru Google, and began to read. Have had a HORRIBLE pain week accompanied by the fatigue and every symptom associated w\ fibro, taking turns and sometimes dancing together. It’s been rough. Anyhow, as I read this post, you spoke of the yearly trips to Piano, and trips, and growing up in SoCal. You mentioned leaving California. THEN, you mentioned my own hometown of Bakersfield! Suddenly, I feel I know you! We not only have fibro and chronic pain in common, but locality. I myself (along w\ 3 kids and hubby) transplanted to the Midwest, Illinois. Love it here. Not sure if I posted my email correctly (you know how the “brain farts” can be, I’m sure!), but I hope to talk w\you sometime. I love your blog, and your insights, and will continue reading. I’m 51 now ,but I went to BHS. Wonder if we know each other from the old Kern County years? (-: Well, keep writing, I do enjoy it! Contact me or reply here if you want, would love to meet you. ~~ Laurie

  3. My goodness, you certainly nailed it on sensory overload! I just thought I was nuts. Thanks for sharing, I understand and experience SO MANY of these, sometimes several at a time! Unfortunately, I’m currently ‘trapped’ in a noisy factory job, trying to change my career path, and sometimes so tempted to try to go on disability, just so I can take care of home better, and pursue my love of photography. And you mentioned Oildale and Woodrow! I really think we may have met at some point, unless you are much younger than I.

Leave a Reply

Your email address will not be published. Required fields are marked *