My Top 20 Cheaters!

Do you ever just get fed up? Get tired of being the ‘patient?’ Everyone looks at you as the ‘sick’ one, mentally and/or physically… depending on how cruel they want to be. Do you get tired of seeing one more specialist, reading one more study, purchasing one more book about your disease… Do you ever just stop and scream, “ENOUGH!”

I have not. That is, I haven’t screamed “enough!” I’ve wanted to! I was afraid my family would send the men in white coats to take me away to a ‘nice’ place to rest. I haven’t said it out loud, but I have reached; ‘enough!’ I’ll get over it; I suppose, but for right now, I’m so done with fibromyalgia!

I’m sick of being the ‘patient.’ I just can’t stomach one more doctor or another treatment plan! If I read one more research study about fibromyalgia, I with begin to tear the hair out of my head. If I hear about one more ‘cure’ I will start screaming and will not be able to stop. I am so done with being chronically ill! DONE! … but it isn’t done with me.

So… I put on my combat boots (yes I have combat boots, doesn’t everyone?) and I begin to think of all the things I’ve learned to use in the last 20 years to ‘combat’ my fibromyalgia symptoms. Since I am not an affiliate with any money making company, I decided to share the things I use. I’m straight up going to tell you what works for me, I call these things my cheaters. Maybe my cheaters will work for you, perhaps not.

*Remember, I am not a doctor nor do I play one on TV. I’m asking you to check with your doctor before using any additional over the counter (OTC) medications.

My Top 20 Cheaters:

  1. Vicks Vapor Rub. Cover your feet with the stuff and put socks on. Body discomfort, colds, congestion, allergies, toenail fungus… (10 days for the nail fungus to clear up). Your mother was right about Vicks Vapor Rub. This stuff works for just about anything!
  2. Essential Oils. Eucalyptus, peppermint, and lavender. Clears up the sinuses and has a calming effect. I use a diffuser. I also use one of those necklaces that holds a small ball of charcoal. You can put essential oils on the ball of charcoal. Some oil brands I like (and have researched) are Plant Guru, Sun Leaf, and there is a roller ball mix called CALM from farm to you. It not only clears my sinuses but helps my mood!
  3. Epsom Salt. I use some in my bath for sore muscles. This stuff is incredible! I also use this to soak my feet when they are painful. There is a fancy one that has lavender in it, and it is nice, but good old everyday Epsom Salt is key!
  4. Dramamine. This works VERY well for dizziness and nausea. If you get the original formula, it will calm you down. If you are already fighting drowsiness, get the less drowsy formula.
  5. Popsicles. Indigestion? Acid Reflux? I just switched from chewing ice after a meal, which works but is hell on your teeth to plain old popsicles. A bit softer on the teeth and work just as well. (If you are low in iron, many times you crave ice, this also helps with that craving.)
  6. Coca-Cola. There are days when eating is out of the question. Don’t reach for the ginger ale, Sprite or 7-up. Slowly sip a REGULAR Coca-Cola. Nausea will go away.
  7. Coca-Cola and a candy bar. Yes, you are reading this correctly. Use these items together if you are experiencing withdrawals from going off medication. I learned this trick from an addiction counselor I used to work with. Now if this is already a part of your daily diet, I’m sorry, this won’t work for you. But if you are not used to this kind of caffeine and sugar rush… it WILL work to ease up the side effects. You will get some much-needed relief.
  8. Magnesium. I take a liquid form. If you have fibromyalgia, you need to be taking extra magnesium. Period. (This is what I take and why.) Our bodies do not make enough. Google ‘magnesium’ and you will understand. Or read all about magnesium from Caz at Invisibly Me!
  9. B12 shots. B12 is another no brainer. (Google away, people!) I take an intramuscular shot. You can take the regular shots or get the vitamins. B12 is like the highway for your body to absorb everything else while it protects this highway too. You will feel less fatigued, less confusion, and overall better if your B12 levels are maintained.
  10. Generic allergy tablets. Calming.
  11. Tylenol PM. (Acetaminophen) Watch your doses! No more than 4,000 mg per day. Calming and takes care of headaches!
  12. Ibuprofen. You can take 800 mg at once, and this is the dose of a pain relieving pill you’d be given with a script. The goal is to not have to do this, but when you are in pain, you do what needs to be done. (Some should not be taking NSAIDs, check your prescriptions for adverse effects!) Always use caution.
  13. Handheld Massager. Restless leg sufferers, this cheater is for you! (Also…#14.)
  14. Weighted Blanket. I use a weighted blanket for Restless Leg Syndrome and anxiety.
  15. Nyquil. We all know Nyquil is our favorite knockout medicine. Use it when you need to. Sleep is healing.
  16. Therapy Belt. I use one for my lower back pain. Get one from Amazon. They are velcro and cost about $15. You should read the directions and always align your hips when putting on one of these belts. (If you have questions, I can help, just ask.)
  17. Clay heating/cooling packs. These are just super nice! Since they are clay, you can squish them and mold them to your body. Walgreens again… they carry these clay packs that can be heated up in the microwave or frozen.
  18. TENs Unit. If this works for you… buy one for yourself! The TENs unit doesn’t work for my fibro, but my husband uses one for his sore back. Not that expensive. Does not require a prescription. Available on Amazon and at Walgreens.
  19. Salonpas. These are little patches you can put on the exact spot you feel pain. (Choose wisely, they are medicated!)
  20. Drugs.com. Put this APP on your phone. It is free and easy to use.

Bonus cheater!!!

#21. A Medication Journal!

You really need to have a journal, especially for your cheaters. Write down what works and what dosages are best for you. Remember to record the medications you take and always the amounts! It doesn’t have to be pretty, just accurate.

Please leave any questions for me in the comment section. Use these cheaters as aids, do not use instead of a medication that is prescribed for you.

And finally, please remember;

 *I am absolutely not a doctor, nurse, or medically trained in any way, except in CPR and first aid! I can breathe the life right back into you while I bandage a head wound… but nothing else!

 

 

img_0992~Kim

Put on Your Big Girl Panties and Deal!

I am battling through ‘something’… a new stage of fibromyalgia? Is this a 50 + club I have inadvertently joined? I have 2 decades of experience with this disease. Does anyone have a third decade under their belt? Did you notice any changes in your third decade? Anything that should be added to the Stages of Fibromyalgia?

So far this is what I am noticing, anyone else please chime in!

  • Just fatigue? Hell no, this fatigue has laid me out for two straight days, close to 48 hours of sleep! An infrequent hour awake here or there.
  • Increased pain. Yep. Maybe because I am not moving around as much? Mr. Pain had definitely laid claim to any waking hours I can grasp.
  • This disease is throwing me a curveball! I never swing at a curve… I may have to adjust my thinking.

This is the cruel part of fibromyalgia. If you are cognizant of the changes your body is going through it is scary, and worrisome. Is this a new symptom that will remain permanent? Am I losing my awake time? My productive time? I am losing days, not hours. Is this a stage I must go through? God help me, I am afraid.

If you are in a full-fledged fibro fog, it is not so scary. (I swear I’ve never wished for fog until this week.) It is scary for those who are observing us. Our poor caretakers. We are mimicking the first stage of fibro, all we do is sleep. For those of us who are in a fog while we flare, we kinda get off easy, we don’t remember much. We simply can’t remember.

I have started a Hemp Salve for pain. I am not going to write too much about it IMG_5021because I need a bit more time with it. So far, works on back pain, arm pain and settles restless legs ‘a bit.’ Definitely more pros than cons. Monday I will call to get my Medical Marijuana Card. I have been eligible for some time but just haven’t wanted to take that step. It Is Time.

 

 

 

Change is scary.

IMG_0390~Kim

There is ‘Stuff’ Going On …

I have a hard time staying present when talking to friends, family, even my husband some days. I am always bringing up the past, my past. They have raised families, attended weddings, vacationed, changed jobs, moved … all the things ‘normal’ people do. I wonder, is my thought process that stunted? It is. I am more than a bit self-centered when it comes to dealing with my illness. To me, it is the most important thing in my life. To others, it simply is not. An illness is just ‘stuff’ that happens, usually to others

Let’s face it, most people are either healthy, or they are not. They are fat, or they are not. They are happy, or they are not. And when you ask them how they are? They are fine. When you ask someone with a chronic illness how they are… it depends. If they have had their illness for some time, they are fine. If they just got it, you will get an inventory of how they are feeling. If they are not feeling well, you may get, “Like you care?”

No wonder those of us with chronic illnesses do not gain much favor after the diagnosis of ‘chronic’ comes. It’s really a crapshoot dealing with us! A gamble. We are certainly not current in our thoughts, ideas, or family events and happenings. Even though chronic illness tends to take away our ‘ability to engage,’ we try to fight our way back. So, just what is there to talk to a chronically ill person about besides their illness? Those of us with chronic illnesses need to think of ways we can communicate and be present in our lives!

Human beings, in general, get over ‘stuff.’ An illness to most is just ‘stuff.’ People have a lot of ‘stuff’ happening in their daily lives. To a person with a chronic illness, this ‘stuff’ is an all-consuming, every minute of an everyday companion. It must be listened to, cared for, attended to. Hence, we must seek balance. We must seek some semblance of “normalcy.”img_1699

It is time to put the little monster called fibromyalgia on a schedule. You can’t just ignore it, although at times you must put on a brave face and pretend it doesn’t exist! There is a process you must learn. You must re-engage in real life. Current life. When was the last time you had a conversation about anything without an illness in it? Aches and pains, flares and fog? Can you think of a sentence that doesn’t start with, “Because of my [insert name of disease]…” Your deceptive little chronic companion stamps its feet and demands to be heard! It is a two-year-old throwing a tantrum. Guess what? We are smarter than that two-year-old.

We are smarter than a two-year-old. We are done being controlled by a tantruming, time-consuming illness. We will tend to it, on our terms! We will pay attention to it, on our time. We will re-engage in current events.

Ideas:

  • We will find a support group in which to share our feelings, ideas, and resources with.
  • We can make and follow a schedule to reduce the probability of fibro flares.
  • We can follow our medication schedule to keep flares at bay.
  • We can stretch and gently exercise every day.
  • We can pursue hobbies that have nothing to do with fibromyalgia.
  • We can keep a journal, ‘My Complaints Journal’ so we don’t feel the need to report our ills to others, uninvitedly.
  • We can seek out daily, positive activities so we can open a conversation that is pleasant and cheerful.
  • We can take charge of our illness, to the best of our abilities, it will not be in charge of us.

What are additional things, ideas, and/or activities,  we can do to participate and engage in the present?

Let’s live our best life!

Screen Shot 2018-02-25 at 12.48.43 PM~Kim

Trust Me, Eat the Monkey.

I had a friend tell me that she used to trust anyone that could write a prescription. So did I. Trust. That is a big word. Those five little letters in a row can be life-altering. Do you trust me? Do I trust you? Trust is a knife wrapped with a bow. A gift that can cut you and make you bleed.

In life there are buyers and there are sellers. You have to be willing to purchase what they are selling in order for that seller to continue selling. Does this make sense? The rule of supply and demand. We all have something to sell and we all have something to buy, that is what motivates us. The bottom line is do you trust the process, the person, the outcome?

Let’s cut the through the B.S. 

I want to get well. I want the doctor to cure me! Why? Because I want to be healthy, return to the career that I love and make money so I can buy stuff that I want to buy. I busted my butt getting a college diploma and I haven’t gotten my fill of the working world! I’m sick and tired of being a “patient”. I’m sick of being the “buyer” of those things deemed necessary by a seller. Like medications, therapies, yoga mats, TENs units, and etcetera. I want to be a seller for a change! I want to sell my services and get a big fat paycheck for the work I can be trusted to do! The work I was trained and educated to do.

What am I willing to do to become a seller? At one point, I was willing to do A-N-Y-T-H-I-N-G! If I was told to eat a monkey, I’d eat a damn monkey! I trusted the people who were telling me to eat the monkey and I ate! Guess what? It didn’t work. I am not cured. Broken trust? Not yet. Not for me! I went back, bleeding with hands held open for another helping.

And I kept going back, after all, these people had prescription pads…

Eventually, trust was slowly and sadly removed from my vocabulary. Trust must now be earned. I don’t care if you can write a prescription or have several initials after your name. I do not care at all! You have to earn my trust. I’m not buying blindly anymore. I will listen and take your advice into consideration, but my purchasing power remains steadfastly with me.

I can read, I can research, I can weigh out options and make a list of pros and cons… I am smart. I am the buyer at this point in my life and I am well aware of the target that places squarely on my back. Within these confines, I need to do my due diligence! That isn’t just a good idea, it is imperative to my goal of getting as healthy as I can possibly be and living a good life.

You are smart, you can read, research and do your due diligence! Don’t blindly buy what the seller has to offer, it might be just a monkey.

Live Your Best Life!

(Trust Me, Eat the Monkey! via I Tripped Over a Stone.)

IMG_0193~Kim

My Night.

In my bed.

Breathing,

Rise and fall,

Veins beat with pain.

In the darkness.

In my body,

like a song.

Stillness.

Hold my breath,

Pain pulsating, no!

Foreign.

My body,

is my own?

Pulsing pain beats.

Never ends,

Rise and fall.

~k.lynel

The Slam Dunk Seven Symptoms of Fibromyalgia!

Fibromyalgia comes with so many symptoms and coexisting conditions it is difficult to know if you are suffering from issues directly related to fibromyalgia or a different illness. There are a few common symptoms of fibromyalgia that you can count on being by your side once you are diagnosed. Maybe not all, but here are The Slam Dunk Seven Symptoms;

  1. Pain.
  2. Fibro Flares.
  3. Fibro Fog.
  4. Depression.
  5. Headaches.
  6. Sensory Sensitivity.
  7. Digestive issues.

These seven are the slam dunk symptoms of what accompanies fibromyalgia. Let us be clear about these when we are asked about our disease. It gets messy when someone asks you to tell them what fibromyalgia is and you start listing off other chronic conditions and coexisting symptoms with your fibromyalgia symptoms. If we want to get the message out about Fibromyalgia Syndrome, list your Slam Dunk Seven Symptoms.

When you are asked specifically about your fibromyalgia symptoms stay on topic. This not only clears up the confusion, but it also shows you are knowledgeable about your disease. This goes for all types of chronic diseases. It gets confusing when you rattle off restless leg symptoms, rheumatoid arthritis symptoms, other pain symptoms, allergies, and all possible coexisting illnesses you have. These are no less important! These are illnesses you are battling right along with your fibromyalgia! When you are asked specifically about them that that is your invitation to spill more symptoms, as well as conditions.

We are continually researching and learning about our disease.  Things are changing as more attention is now being paid to this monster we call Fibromyalgia. What was once thought to be fiction is now fact. What was once called a “garbage can disease” is currently registered in the International Classification for Diseases Classification Manual with its very own diagnostic code, M79.9. Stay current! Knowledge is power and power affords us the ability to take charge of our fibromyalgia.

Live your best life!

IMG_0255~Kim

See more: Acceptance? Here’s Your Ticket!

You Must Deconstruct to Reconstruct Your Life!

 

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I use to wonder if I would die from this Fibromyalgia Syndrome I have? Fibromyalgia in itself is not an autoimmune disease. An autoimmune disease is when your immune system attacks your healthy cells by mistake, you suffer from inflammation and chronic pain. Some autoimmune conditions even cause death. Fibromyalgia is not this. Fibromyalgia is considered a lifelong central nervous system disorder. It is chronic meaning you will have it for the rest of your life. You live with the pain and the co-existing conditions, but it will probably not kill you. In fact, the number one killer of people with fibromyalgia is suicide.

I have had fibromyalgia since 1998. I was a passenger in a car accident. I experience chronic pain, chronic fatigue, insomnia, clinical depression, post-concussion headaches, severe anxiety, cognitive impairments and digestive issues just about every day of my life since that car accident. Who wouldn’t feel like ending the pain? Some days suicide seems like the right choice. Once you’ve made up your mind, these irrational thoughts become rational. You have decided on a plan and are damn proud of it. Relief washes over you. You feel happy! Finally, you feel like you are in control! But up until now, luckily, something always stops you…

Honestly, I don’t want your pity, your medical advice, or your employment advice. If I hear; ‘get out of your own head,’ ‘I know a person who recovered from fibromyalgia,’ or ‘just volunteer, you’ll feel better’ one more time I swear I will scream! But I do. I hear those bits of advice frequently. I hear these things from people, I thought, knew what I was going through. Obviously not. 

By the way, people expect volunteers to show up! I don’t even know if I’ll be able to put together a full sentence on any given day let alone keep a promise to volunteer for a specific frame of time…

I have arrived at a place in my life where I just don’t give a damn what you think because I have to live in this body, not you. You have no idea what I have had to endure until you have walked a mile in my shoes, which I doubt you could stand for 10 minutes.

I read about a man who has fibromyalgia talk about deconstructing your life to reassemble it in a way that addresses your limitations. I have never read a better description of what a person with fibromyalgia has to complete to live some resemblance of a normal life. There are chemical changes in a person’s fibromyalgia brain. These chemicals tell the brain to fire random pain signals as we can’t maintain a feeling of well-being. Our bodies are kept in a constant ‘fight, flight, or freeze’ mode. This results in on-going pain, cognitive impairments, weaker immunity, digestive issues, poor sleep, low energy, and the list goes on… The introspection it takes to deconstruct, then reconstruct your life is painful and takes time. But you do it, you face it. You have to address this chronic disease and your very real limitations because of it.

In the end, people in your life do not deserve to be collateral damage. So, after a few years, you stop with all the doctors, all the tests, all the programs, and all the alternative treatments. You start putting together what works for you. No one can do it for you! I can’t, your mother can’t, your partner can’t. If you are expecting them to help you in this process, they just are not equipped to do so. Eventually, you will stop reporting your daily hurdles to everyone around you. You will get in the right frame of mind, and you will just begin. The double-edged sword that comes with a chronic illness is you don’t want advice, but you get it. No one can help you, even though you want them to.

Finally, my advice to you! (If you want it…) Get professional mental health help, this journey of deconstructing so you can reconstruct is no joke. Join a support group, find one that suits your needs. Find something, anything that you enjoy but works the brain. Adult coloring, drawing, crocheting, reading, crossword puzzles, jigsaw puzzles, go to YouTube and learn something. (I’m still trying to learn to crochet left-handed!) Your process for the rest is all up to you. My hope for you is that you are mentally prepared and supported throughout your journey with fibromyalgia.

Live your best life!

IMG_0250~Kim

 

Why is Chronic Pain so Tiring?

With fibromyalgia, as well as other chronic pain diseases, the brain is continuously firing pain signals. Our brain receptors are consistently attempting to keep up! Brain scans have revealed that those with fibromyalgia are not producing enough of the organic chemical, dopamine. This low-level restricts our ability to maintain a sense of well-being. Remember, the fight or flight model includes ‘freeze’.

Human beings, as well as most mammals, are virtually programmed to avoid pain. When we experience pain, physically or emotionally, we instantly react to the fight, flight, or freeze mentality. Pain, or the perceived threat of pain, requires action! This perception triggers us to respond. (Even unknowingly.) Put your hand too close to a hot burner on the stove, you react!  You go on a hike, there is movement in the grass to your left, you freeze! These responses have been helpful from an evolutionary standpoint. These reactions can be beneficial when directed at an appropriate situation.

When chronic pain exists, the fight, flight, or freeze response also becomes chronic. This chronic response causes undue stress to your body, accompanying the ever-present hyper-awareness that this state brings with it. Worse still, these responses become programmed and automatic. This means that you can be stuck in this survival mode for days, weeks, months, or years at a time. (We commonly refer to this as a fibro flare.)

Our human bodies are just not designed to function chronically in this response mode. This causes our inability to function at certain times. Chronically ill pain patients are already in pain! We experience fatigue and emotional disturbances due to the sheer fact our brains are busy with this nervous system response that we find hard to control. Being a chronically ill individual causes a reaction response to a threat that is sometimes not there and possibly overreacts to painful situations. Think of this as an example, you have a sunburn, you are hurting, and you see someone reaching to touch your shoulder, you react! Now, the same scenario, but you don’t see the person, you only feel the touch … ouch, now how much are you going to react? The bigger the reaction, the more pain you create on your body that is already damaged by your illnesses.

The good news is … we can choose, at least some of the time, how to react if we are aware of our triggers and/or lack of triggers. We go back to living mindfully. We cut down our stress and practice meditation, preventative cognitive thinking, and/or other calming activities we have found work for us as individuals. What works for one may not work for another! So you must find what works to calm you, relax you, and try not to set yourself up for stressful events.

What do you do to calm down your stress responses?

IMG_0255~Kim

The Liebster Award (x2)

Steve at MSich Chronicles and Tom at Tom Being Tom have nominated me for the Liebster Award, and I have been trying to keep up with these guys ever since! Check out their superb blogs! They write about everything you need to know and even things you didn’t think you needed to know, you do!

  1. Thank the blogger who nominated you.
  2. Share eleven facts about yourself.
  3. Answer the eleven questions the blogger gave you.
  4. Nominate eleven bloggers who deserve the award.
  5. Create eleven original questions for the nominees to answer.
  6. Let them know they have been nominated.

Due to the length of this blog, eleven facts about me will be quick!

I am female, 5’2″. I am married, and I live with my husband, Jeff in Minneapolis, Minnesota. We have 2 dogs; Dora and Dezzie. I have had fibromyalgia for over 20 years. I wrote a book! (You should get it!) I admin a support group. I blog here, and I blog there.

Here are Steve’s eleven questions:

Do you prefer boxers, briefs or going commando? And for the ladies, what is your preference for the men in your life? Boxers, the knit kind with tight legs, please. (No one wants to see your junk!)

If you could sit down to talk with one non-religious person, dead or alive, who would that be and why? Marilyn Monroe. (My husband is obsessed with her, I want advice.)

What is your biggest fear? Snakes. (Big or little, venom or not!)

What is the most important quality you need in a friend? Humor.

If you could change one thing in your life, what would it be? My health.

Who is your favorite author? Isabel Allende.

Small Town or Big City? Small Town on an Island!

Salt or sugar? Salt!!!

What is your favorite thing to do when you have some alone time? Watch paranormal TV shows. (They make me laugh when the characters get scared, I know its wrong to delight in others fear!)

The Beatles or The Rolling Stones? Well, Woodstock or the Moon Landing? I’ll take Moon landing and the Rolling Stones for $600. Bob!

What is the one thing you would like to see happen before you die? Peace between the political parties in America.

Here are Tom’s eleven questions:

If you could have one superpower, what would it be? To be able to make money at a moments notice.

Would you use it for others, primarily, or for yourself? Myself. (I would share!)

Twenty years from today, someone hands you a potion and a piece of paper. They say you can drink the potion and live forever or open the paper and see when you will die. Which would you choose? I’m drinking the potion!

Would you be in favor of universal healthcare in America? I don’t believe it would work, many of us wouldn’t get the healthcare we need for chronic illness care but what the hell? Sure! Maybe if we all had adequate health care from birth we wouldn’t need all the specialists we end up with?

How about universal background checks on gun purchases in America? Absolutely.

What about universal domination of the cosmos by America? That’s a bit self-serving, no one should have that! Tom.

Do you wish, at this point, that there were only 7 questions? Yep!

Are alien species visiting the Earth? Yes, notice they keep taking us but sending us back? (Huge hint people!)

Was JFK killed as part of a conspiracy plot? Nope. Not everyone likes you no matter what your official title is. (Don’t ride in an open vehicle even the Pope learned this.)

Should a person do what they do best, as a means of personal income, or what they love most if the two are not the same? It depends, who depends on you? Make smart choices!

When you were 11 years old, what did you want to be when you grew up? I think a nurse... I was very indecisive at 11.

The end! That was fun guys! Thanks!!!

For my eleven nominees… Remember to list eleven facts about yourself.

Now for your challenge should you choose to accept…

Take eleven photographs that will help us understand what you blog about and post them! There is no right or wrong way to do this. You can write explanations or not. It is all up to you! Help us learn about your purpose!

Click away at will!

My nominees:

If you read this post and are willing to take on the challenge, please do! You are my nominee for the Liebster Award! Please, don’t be shy… I can’t wait to see who will embrace this challenge!

Screen Shot 2018-06-02 at 9.06.23 AM

IMG_0313 2~Kim!

The Underlying Cause of Fibromyalgia

I happened upon a ‘little’ medical journal that ended up being a fascinating read. I like to explain fibromyalgia in relatively simple terms, but this article made me stand up and take notice. First, we will explore what the “experts” concluded. Then I will let you know MY conclusion!

According to the US National Library of Medicine and the National Institute of Health, the underlying cause of fibromyalgia is physical and emotional distress.

Both physical and emotional stressors are frequent fibromyalgia triggers. Bodily trauma, particularly a whiplash injury during an automobile accident, is a recognized fibromyalgia trigger. Also, different types of infections have been associated with the development of fibromyalgia and include viruses (hepatitis C, HIV, herpes) and Borrelia, the infecting agent in cases of Lyme’s disease. Women with fibromyalgia have increased incidences of prior sexual or physical abuse.

Moreover, fibromyalgia patients are often immersed in a stressful lifestyle. A prospective investigation found that the development of this illness was associated with workplace bullying, high workload, and low decision-making possibilities. Anxiety and depression are frequent fibromyalgia companions. Furthermore, many fibromyalgia patients appear to have created their own “lifestyle stress” by physically or mentally overexerting themselves, being perfectionists, workaholics, or engaging in a disproportionate self-sacrificing behavior.

 

According to Kim (Me), the underlying cause of fibromyalgia is a whacked out central nervous system!

Ok, I like what the journal article had to say, and yes, those are undoubtedly underlying issues. It still doesn’t explain why MOST of the population doesn’t have this disease, then!?!? Who doesn’t live with daily stressors? Why more women than men? Why? But, in theory, I agree with their description of possible underlying causes. (They are doctors reporting this stuff, after all.)

So whether our fibromyalgia was caused by trauma; physical and/or mental. A virus, infection, stress, or even if there is a genetic component we still haven’t looked at, the sympathetic nervous system went into overdrive and caused our central nervous system to go nuts. The fight or flight messages cause pain signals to continually fire! Our brain sends these pain signals to our bodies. All day long. There is also the freeze response that coincides with the flight or fight response. You can do nothing but freeze, become stuck and not be able to make decisions. This is frustrating for all, especially for the type A personalities. 

There you have my conclusion. Really, I’m just asking for more clarity and less big words! I think we have a long way to go towards defining fibromyalgia and an even longer approach to answering what types of fibromyalgia are we facing?

I’d love to hear your thoughts about what you believe is the underlying cause of your chronic disease?

IMG_0250~Kim

I Just Might Break

Today I am beginning this post with the hope of answering my own question. I believe I am struggling with coping. I don’t know if it is the heat? The barometer? My medication? Or is it the overwhelming feeling of dread waiting for my body to flare once again. It is basically a fact with fibromyalgia. I know to expect it. I have put together a fibromyalgia toolkit with the items I need to combat a flare. But. I am questioning will this be the last flare I can handle?

I’m tired of feeling almost normal for days then being knocked down by a flare. I’m tired of feeling the increased pain followed by painsomnia. Yes, painsomnia is real. The pain is so excruciating that you can not sleep. All you want when you are in pain is to sleep and find some peace in that slumber. When painsomnia hits, you will not be sleeping. Your flare symptoms will increase even more and will remain with you a few extra days. Why? Sleep heals us, no sleep exacerbates the pain.

I think my body will not give up because it has been beaten down by worse things in this world. I am wondering if mentally I just might break? Fibromyalgia is the gift that keeps on giving. The cruelest part of fibromyalgia is that it is a trickster. You fight through the first few years of this disease in constant high levels of pain, basically flaring non-stop, but you can sleep. In fact, that is about all you can do until your body realizes this is no virus you are fighting but a lifelong central nervous system disorder. Then you get a chance at a few, low-pain, ‘normal’ days.

Mentally, this disease works you over. It makes you think before every action and react to every situation. If I do ‘A,’ then ‘B’ will happen, probably. If I do ‘A’ and ‘B’ doesn’t happen, I may try to do ‘A’ again. This time ‘A’ causes ‘B,’ and you flare without really understanding why it didn’t cause that reaction before. This disease toys with you as a cat toys with a mouse. Soon, if you aren’t careful, you begin to play dead all the time in an attempt to escape the pain.  (It works for the mouse at times.)

Try to imagine the worst pain you’ve ever felt. You are given pain relievers to combat the painful incident. Then it stops… you are active again, feeling good, going to social events then the pain comes back. Now, imagine this horrific pain happens to you every month. Now times that by three ‘episodes of pain’ in one month. Each flare lasting anywhere from 1 to 3 days, up to a week or more. How many good days will you have in one month? (None of them will be pain-free, you lost that privilege once you were diagnosed with fibromyalgia.) A few good days, you may even have many more good days than bad. But that flare is always coming!

I consider myself pretty resourceful and very resilient. I have had fibromyalgia for over 20 years. I prepare and plan my strategy going into and coming out of every flare. But I am feeling less prepared this month. Less confident in my abilities. 

So, when does one break?

Screen Shot 2018-02-25 at 12.48.43 PMKim

 

 

Will You Fight for Me?

A while back I wrote about having to “make the dreaded call” to my doctor. Things were not going so well and I knew I was getting used to my medication. It just wasn’t working anymore. So, time for new medications that come complete with side effects. The first two weeks are the worst, tapering off one and getting up to the required dose of another. After having fibro for over 20 years, you would think I had this medication gig down pat. No. I don’t think I have ever had a smooth transition from one medication to the next.

Let’s recap a bit. I had about a three-week bought of severe depression, to the point my husband was afraid to leave me home alone even though I reassured him I would not harm myself. My fibro flared, I felt as if all the skin had been peeled off my body exposing every nerve, and to top it off my restless legs decided to join the party! I could not sleep. Let’s just say April wasn’t my month.

The day the new medications arrived I began the process, taper off medication ‘A’ and begin medication ‘B’ while adding medication ‘C’. Ride the medication rollercoaster and try to stay away from innocent people because I have turned into a genuine wicked witch. But. The hubby is always within reach…

(Thank God I am married to an understanding man.)

Jeff. “How are you feeling?”

Me. “Like Crap.”

“How are you feeling?”

“Like shit.”

“How are you feeling?” 

“Like dying!” etc… on and on for two weeks.

Finally, one morning as I was sitting up in bed waiting for Jeff to bring me coffee, which he faithfully does every single morning, I mustered up the courage to tell him I was sorry. He handed me my coffee and crawled back into bed sipping on his own cup of coffee. He was telling me not to be sorry (which made me sorrier) and that we’ve been through worse and we’d get through as many medication changes as it took to get me back to feeling better.

“I’m so tired of being sick!”

“I know.”

“I don’t think I have any fight left, will you fight for me?”

“Honey, I’ve been fighting for you since the day I married you.”

“God, you have…!”

“Just think how far you’ve come since then.”

When we started dating I ‘pretended’ to be in pretty good health but the second night I spent at his house I woke up in a flare. He pulled out some sweats for me to wear, I put them on and slept the day away on his couch. He rented a movie for us that night Fools Rush In and made potato skins with three different dipping sauces. He pulled a little table over to the couch, placed a tablecloth on it and the potato skins with little appetizer plates. We ate and watched the movie. I knew I was in love with him from that night on. (It was the potato skins that won me over!) No, it was his gentle soul… his ability to care for me. The first year we were together I was awake for about four hours a day, otherwise, I slept. He helped me move in with him, and he took care of me as I did my best to fight to come out of the fatigue and be present for him. We married about a year after we started living together. He has never once stopped being my friend, my lover, and my partner in crime! I honestly get to say, “I married my best friend.”

It took us awhile to find each other again, we grew up together in the same small town. Our families were very close. Jeff remembers when I was born. We’d known each other our whole lives! But, we each went in separate directions for a while. We loved each other as friends do. Once we ended up in the same city again, we decided to try going out on a date… then another and we just never stopped. It took time to figure out we didn’t just love each other, but we were in love! We decided we were. We are! We know it is a happily ever after story with a few bumps and bruises called life.

We live by our wedding song, At Your Side by the Corrs. Kinda corny but we are a corny couple! Have a little listen!

October 9, 2004, Chapel in the Pines. We are leaving the chapel as Mr. and Mrs. Jeffrey Johnson! I can’t stop laughing I am so happy! And the Corrs are singing our song…

 

And still, close to 14 married years later… laughter!

IMG_4706~Kim and Jeff