National Fibromyalgia Awareness Day is May 12th!

What is Fibromyalgia?

Fibromyalgia Syndrome is a cognitive disorder that affects the central nervous system. This is a disease, and there is no cure. This disease is characterized by widespread musculoskeletal pain, chronic fatigue, depression, fibro fog, and fibro flares.

Fibromyalgia is a central nervous system disorder. The brain is continuously firing pain signals throughout the body. The entire nervous system fully reacts, becoming oversensitive to everything around us! Responding to this unpleasant stimulus, known as “noxious stimuli” is what a person with fibromyalgia feels. Lights are too bright, smells are overpowering, noises are too irritating, heat is too hot, cold is too cold, and touch is too painful.  Happy Birthday, Fibromyalgia…?

Chronic fatigue felt by a person with fibromyalgia is never-ending, even after a full night’s sleep. (Stay awake for three days, doctors report this is what the fatigue of fibromyalgia feels like every day.) Energy is fleeting. This is not just being tired and taking a nap to refresh yourself. It doesn’t matter how much sleep a person with fibromyalgia gets, exhaustion is felt throughout the day. Many individuals have sleep disorders that prevent them from obtaining a deep sleep, this adds to the fatigue already experienced by the individual with fibromyalgia. Should I Leave the Spoon Theory Behind?

Depression is common in people with fibromyalgia. It was found that a person with Fibromyalgia has lowered dopamine level production. Dopamine and the Fibro Brain.  Your sense of well-being is limited. Living with pain and fatigue, day-to-day, will also cause depression.

Fibro fog is a cognitive disorder. This is not like just forgetting someone’s name or where you put your keys, this is a dysfunction that occurs in the brain. The Fog of Fibromyalgia.

A Fibro flare is a temporary increase in pain and/or symptoms of fibromyalgia. This occurs when we over-do things, expending our energy, and at other times for no reason. This will pass, but you will experience flares throughout the entire time you have this disease. Fibromyalgia Flare! Again.

There is a full list of fibromyalgia symptoms listed on this site’s menu, I have only covered the basic ones. Fibromyalgia Symptoms.

~Kimimg_0753

No Pain Medication Allowed!

Hello.

It has been almost five months in my journey with no pain medication. How’s that working? Well, I’m still here. Many others are not. Their pain too great. Suicide rates are on the rise…

What is a flare like WITH the availability of a rescue pain medication, often called; The Evil Opioid?

A painful flare can be somewhat controlled and frequently curtailed with pain medication. The worst pain, treating it with an opioid, will last for two, possibly three days. At least for me. (Everyone is different). Pain medication allows you to get out of bed and function, appearing almost normal to friends and family. You will still be bedridden at the onset of a flare, but eventually, after a day or two of rescue medications, you will be able to carefully get up. You can join in life activities again with your pain levels decreased due to the opioid you take that was prescribed for you by your medical doctor. As your flare subsides, you taper off your rescue pain medication and prepare for the next excruciating episode. You are somewhat rested, mentally in a decent place, and the intense pain has subsided. You are ready to fight the next flare.

But.

What is a flare like WithOUT the availability of rescue pain medication (the evil opioid)?

This is a relatively common flare experience from what I’ve been told by others and what I, myself, go through;

The pain begins to go from the normal uncomfortable pain to the terrifying, body crushing pain. The intense pain that takes your breath away. There is no out. You know you’ll be in this amount of pain temporarily, but for how long can you take this extreme amount of pain? You are bed-bound but can’t sleep. If you attempt to get out of bed during this flare, you will more than likely lose your balance and take a tumble. You will probably pass out. (Yes, frequently I pass out from the intense flare pain.) You will be nauseous, you won’t be able to take deep breaths, you will cry. You wish you could just die. You take muscle relaxers, Tylenol, and Ibuprofen. Dumbs you down but doesn’t take away the pain. You take other over the counter medications you pray will help. You may try to use alcohol to self-medicate. The fog rolls in… you are experiencing cognitive difficulties now. Fibro Fog. You can’t put a sentence together, you get lost going from one room to the next. You are entirely unable to help yourself in any capacity. You may be on your way to the emergency room. (I don’t go anymore because I was called a ‘drug seeker.’) Finally, after one week or two… possibly more, the crushing pain ceases and regular pain returns. The fog lifts. You are physically exhausted, mentally spent, and dreading the next painful flare because it will come again. It always does…

But! You are opioid-free!

I haven’t been a medication abusing addict, ever. I’ve used opioids for twenty years, as directed, but what the hell do I know? I’m just an adult, chronic pain, patient. I read medication labels and follow those directions. (Yes, there are directions on every bottle, and they are quite simple to follow.) Now, I have had my access taken from me. Some individuals don’t follow the directions on the label. They take more than directed and/or steal them from those that have this medication prescribed for their pain. These abusers have ruined my right to access readily available pain management medication. I’ve been denied the fundamental right to medicine that provides me comfort, reducing the extreme pain I experience because of my diagnosis.

What’s the big deal?

So, I’m not going to die from severe pain just because I do not have access to pain management medications. This is basically a quality of life issue. Not having access drastically reduces my quality of life! These pain management medications are available! It’s like saying there are antibiotics you need to fight the flu, but you aren’t going to receive any because there are those who misuse this medication. There are too many people taking these antibiotics irresponsibly; therefore, you must suffer through the flu for as long as it takes. Realistically you get the flu once a year. What if you got it every month? Does that seem like a sound decision to deny you access to a medication that would curtail the severity? What would your quality of life be like? It would suck. That, my friends, is the big deal!

Does this make sense to anyone? We do not have an opioid problem in this country! We have an addiction problem!!! (Addicts also need the right kind of help with their disease.) The next time you hear about the ‘opioid epidemic,’ please speak up and set the record straight! 

img_0456~Kim

Revisiting Trauma?

I believe I am revisiting past physical trauma.

I am struggling with a flare. This makes sense as there are so many significant changes happening in my life (selling my home and moving while flaring!). But. This flare is eerily similar to those flares I had right after the car accident I was in. How am I to handle this? Has my body reverted to experiencing traumatic events by responding to how it used to? Emotionally this is a bit of a train wreck to try to deal with!

Am I revisiting trauma?

I have had my toolbox out and found my ability to Zentangle (a planned pattern that is repeated) is limited. I can set up one, but I cannot make the patterns the right way, my spacial judgment is off. Crossword puzzles are not an option at this point either. I can’t remember names of items I know, let alone come up with words I am not familiar with. I am unable to sleep for more than two consecutive hours due to pain waking me. I am taking rescue medication for pain and sleep, but it is not helping much.

Am I reverting to past behaviors because of trauma?

My husband looked at me yesterday and said, “I’m concerned.” I asked why, and he stated he hadn’t seen me take this amount of pain for this length of time. I responded that it was simply a fibromyalgia flare and that I could deal with this. He looked doubtful, walked out the door, popped his head back in, and said, “Keep fighting.”

Can I continue to fight this flare, at this intensity for much longer?

The short answer is yes. Of course, I can (and will) continue to fight. The worrisome part of this answer is how? I went back to basics. I got out my therapy belt, the Sympathetic Therapy System (STS) machine (the STS machine is no longer being manufactured, sorry) and the Epsom salt. I found my body pillow and my hot packs. I’m back to using popsicles and crushed ice to control my nausea and severe heartburn. I am taking my magnesium and my B12 shots… this will work, it has to.

I am experiencing a trauma-induced flare.

The rush to sell and pack, leaving the home I’ve known for the last fourteen years had an impact on me that I wouldn’t have guessed possible. It was traumatizing being in so much pain and having to continue the activity (packing and moving) that triggered it. But this is just a flare. This means although my pain is more intense, this is only temporary. I will come out of this flare by fighting each and every symptom it throws at me and managing them.

 

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Hello Chronic Illness Vampire!

When is the last time you asked someone how they were and meant it? You really wanted to know how another person is doing? Physically and emotionally? Not asking out of politeness or obligation. Not asking so you can tell that person about your issues. What was the last conversation you had that was not about you?

It’s interesting with a chronic illness… chronic, it is with us forever. We begin to live in it 24/7. Not by choice but because we have to. We have to put our health first, and for many of us, it’s the first time we’ve ever put ourselves first. We learn to say, “No.” We learn what pacing is about, and take our medications on time, as prescribed. We do our best not to intentionally do things that make our symptoms worse. We eventually learn to live within our limitations. We also realize our chronic illness is the most important and time-consuming part of our lives. It has to be. To others, it is just not.

Have you become your own best friend or your worst enemy. Can you name three things you did today that have nothing to do with your illness? Just three. I’ll even give you one; watering the plants… if you are having a hard time coming up with three things, you have a bit of soul searching to do.

It’s time to separate the person (that’d be you) from the illness (that would be the little chronic illness monster that follows you around). Everyone needs some alone time! You are in there, the you that talks, laughs, smiles, and still enjoys the fun. Yes, you are still that person!

You know that one person who calls, you look at the caller ID and groan, do I have the energy to deal with him/her today? We all have one of ‘those people’ in our lives. Have you ever wondered what people think when they see your name on the caller ID? How much fun are you to talk to? How much fun are you to go out with? How much fun are you to live with?!?! You should be asking yourself these questions because your illness is never going away.

It’s not your fault you got sick! It’s not your spouse, partner, friend, parent, or child’s fault either. And. IT IS NOT THEIR JOB to be your constant sounding board as you play chronic illness vampire and suck the life out of all those around you.

For now, think about how you cope with your illness. Remember to be aware of three things you do daily that has nothing to do with your disease. Be cognizant of your conversations, are they always about your health issues? Are you genuinely concerned about other people’s lives?

Beware; if you are not aware of these things, you will become your disease.

No one wants that for you, absolutely no one.

Live your best life!

img_1036-2~Kim

Fake It Until, Oh Stop!

I’m not a fan of the saying, “Fake it till you make it.” Just STOP being a faker. I just get mad when I hear, “Push through the pain.” Push t-h-r-o-u-g-h the pain??? Then what? There is no reward for pushing through the pain unless you are giving birth. A person with a chronic pain disease never reaches the other side! We never reach pain-free. So you go right ahead and push through while you fake it, Normal Person! (Whew, rant over, I think.)

I’ve been in bed since Tuesday of last week. Yep. Not real happy about the pile of mail that has accumulated on my desk in a matter of days. I got up to take a bath and that about sums up my week. Thankfully, I had written all my posts for last week and had them scheduled for posting. (Every single post was pre-scheduled!) I had some issues with my pancreas then a big old fibromyalgia flare decided to swoop in. Believe me, the things you tell yourself even when you know better. (Even when your husband is shouting at you to get back into bed … and not in a sexy way!)

All I could think was;

Get out of bed!

Make an attempt!

For crying out loud, do s-o-m-e-t-h-i-n-g!!!”

I was able to escape cognitive fog this time around. Now at least when you have cog fog, you really aren’t aware of time passing, so it can almost be a blessing; like a mini brain vacay! So I set up a little office in my bedroom. I have a bag put together of everything I need for a fibro flare (my fibro toolbox)  and did the best I could to maintain my cognitive abilities and wait out the severe pain episodes… I couldn’t believe it took an entire week.

So, spring approaches. I am preparing to venture outside once again. I feel like a bear who hibernates away most of the winter, but I was AWAKE the whole time, and eating! Well, at least I tried to make healthy choices. However, there is a time and a place for pop tarts. Just saying…

Live your best life!

img_1722~Kim

 

 

It’s ‘Come to Jesus’ Time! (No Bullshit.)

Do you know what ‘come to Jesus’ time is? It’s truth time! I’m sure you’ve had many of these types of discussions with your parents, children, spouses, etc…tell the truth and no bullshit allowed, no excuses. So here I go…

I’ve been in a mediocre flare for the last week. Just enough pain to put me in bed for a few hours a day. No fibro fog with this flare. Kinda makes it difficult as you are a-w-a-r-e of everything going on around you but you can’t participate. So… I am extremely agitated and trigger happy. DON’T FLINCH BECAUSE I WILL SHOOT! (Sorry for yelling.)

My doctor is quitting, she still hasn’t contacted me, and I’m thinking she won’t. My dogs need baths and haircuts, but it is 20 below zero daily! That’s not happening. What the hell happened to global warming? My husband and I had the “talk.” No. Not that one, the other one about money. The tricky part is to remember it’s just math, and numbers are black and white.

I thought it would be a good idea to refuse to pay my medical expenses for a nightmare hospital stay I experienced in September 2018. Last week a bill collector finally called, so I blocked the number (like that’ll fix the problem) and sent in a small payment. A VERY SMALL PAYMENT! (Sorry I yelled, again.) I have concluded this was not a good idea. I suggest you don’t follow my lead…

Then, the creme de la creme, I posted this on FaceBook:

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I figured if I wrote it by ‘Furiously Fed Up’ no one would know I was the one who wrote it. Brilliant! Yeah, that didn’t work. I believe it was my mom who first commented with “got it.” And then the commenters followed with concern. My bestie even called to make sure I was OK. I don’t recommend posting anything on Facebook when you are two days into pain killers. (Note to self!)

In the end, I know my flare will end. I will find a new doctor. I won’t shoot anyone. Talking about money is not a bad thing. I will end up paying the stupid medical bills. Most importantly, I was having a ‘come to Jesus’ moment and I meant every word by Furiously Fed Up!!!

Is it really only Tuesday?

Live your best life!

img_0581~Kim

 

The Chronic Illness Hell Flare.

“I will take charge of my illness it cannot be in charge of me.”

Before we begin, can I just explain how much I hate going to the doctor? I mean, getting ready? (Showering is hard but who wants to be the ‘funky’ patient?) The questions! When was your last period? Yes, the question they ask you every damn time, and you can NOT remember! Could you be pregnant? Well, what are the chances of immaculate conception? The enticing but gross magazines. Even though you want to lose yourself in one of those bad boys all you see is “GERMS!”

So back to my initial statement, “I will take charge of my illness it cannot be in charge of me.” I realize this is now bullshit. Because it has me by the rear and is shaking me like the 70’s commercial for shake N bake “…and I helped!”  (Remember that sweet little child in the commercial who helped? If you don’t, I can’t help you understand.) I am not saying, you can ‘control’ this chronic illness at all times, but I am saying you can take charge by coming up with a plan.

Taking charge (in this case) of a flare that has come out of nowhere and I really don’t even know if it is a flare or if an alien really did succeed in taking over my body… ‘taking charge’ means any damn way we can think of! I currently put out an S.O.S. to my doctor. (Did I mentioned how much I hate going to the doctor?) Yes-I-Did! And I LIKE my doc! But I will do whatever she requests if she will just call!!!

My trip to the chronic illness hell flare is called “My FM Day.” I named it. Notice the positive indication of calling it a ‘day’ instead of three days, or a week, or a month? Just stay with me, I know I sound like a crazy person right now.  There is nothing positive about having a flare. I let others know by stating I am having an “FM Day” so I do not have to verbally abuse them.  Those who care to know more will ask. Those who understand will not need to ask and will retreat. So, take a moment and name your ‘hell’ day, week, or month. (Please inform your loved ones of said name.)

  • Got a name?
  • Now get a box, bag or suitcase.
  • And gathered supplies for…

“My [insert hell flare name] Day”

  • Adult coloring books and colored pencils.
  • DVDs.
  • Netflix.
  • Amazon Prime Video.
  • Zentangle workbooks and gel pens.
  • Sketchbooks.
  • Journals.
  • Crossword Puzzle Books.
  • Playing Cards.
  • etc.

There will be rescue medications we will have on hand for flares. At times, we will have an S.O.S. call into our doctor. There will be soft PJs and lots of pillows on the bed. Don’t text! Don’t write letters! Talk as little as possible because you will not have nice things to say! Seclude yourself as much as possible but when the flare is over, it is over. Taking charge means we get through IT however we need to!

We will get through this!

img_1722~Kim

Seven Symptoms of Low Ferritin

Iron Deficient, Anemic Lady with Fibromyalgia! (Whoa…What?)

It’s good to be back! I have some amazing news! The riddle of my mysterious, continuous fibro flare has been solved!!! The not so good news (for me) is this is a chronic issue I will need constant medical intervention for. You may, too?

Hemoglobin and iron are proteins in the body. Hemoglobin is in our red blood cells and carries oxygen to your body’s organs. If our hemoglobin is low, this means we are anemic. Ferritin is a protein produced by the body that contains iron. If our ferritin is low, we have an iron deficiency.

I am anemic. 

I am iron deficient.

Is there a correlation between fibromyalgia, anemia, and iron deficiency? According to a verywell Heath article posted February 26th, 2018, the answer is yes;

For people living with fibromyalgia, nutritional deficiencies can be an on-going concern. This is especially true among women with fibromyalgia of whom 90 percent have some level of iron deficiency. In fact, according to research published in the European Journal of Clinical Nutrition, fibromyalgia can increase the risk of iron deficiency in women by as much as 88 percent.

Chief among the concern is the development of iron deficiency anemia. As the name suggests, this form of anemia develops when you lack a sufficient amount of iron in the blood. Without iron, your body cannot produce enough of the substance, known as hemoglobin, needed to carry oxygen to cells.

Why iron deficiency may be higher in women with fibromyalgia is not entirely clear, and some have come to believe that the association may be, at best, incidental. Despite the contention, it doesn’t negate the impact that anemia can have on a person living with fibromyalgia or the importance of diagnosing and treating the condition early to ensure the best possible quality of life.

I knew I was anemic, my hemoglobin would sometimes reach a ten (12-16 is the normal range for a hemoglobin test) but usually stayed around an eight. I never knew about ferritin, even what it was or did. I do now! Low ferritin had not been traditionally associated with fibromyalgia, nor had anemia, until 2016. But low levels of hemoglobin and/or ferritin for a person who has fibromyalgia can cause a severe flare. We will not get over a flare until we raise those levels.

Optimizing iron levels can have a significant impact on improving how we feel.  We need to have our ferritin levels checked. (This is a separate blood test our doctor can simply order.) Some doctors will consider the ferritin test to be normal if it is over 8. My clinic labs report 15-205 being a normal ‘range.’ Iron researchers consider these ‘normal’ range numbers to be (and I quote) “insane.” The absolute, lowest optimal number for an acceptable ‘normal’ Ferritin level is believed to be 60.

There are 7 symptoms tipping us off to asking for a ferritin blood test.

  1. Fatigue
  2. Hair Loss
  3. Unexplained Infertility
  4. Restless Legs (Ferritin levels under 60 have been associated with Restless Leg Syndrome, and you can calm your legs by optimizing iron and magnesium intake.)
  5. Cold Intolerance
  6. Anemia
  7. Anxiety

Let’s add another log to the fire, the correlation between anemia and the need for intravenous iron infusion after Roux-en-Y Gastric Bypass Surgery. Yes, weight loss surgery. (If you haven’t had weight loss surgery, feel free to skip this part.*)

(Let’s talk about the ‘fat-lady’ surgery. I had the RNY gastric bypass surgery in 2010 and I can say ‘fat-lady’ because I am one. This surgery is not a cure-all. You will go through months of psychological testing and nutrition classes if you plan on having this procedure. If you’ve had the operation and haven’t been tested and trained, your chances of long-term, weight loss success is extremely unlikely.)

Weight-loss surgery helps you lose weight and lowers your risk of medical problems associated with obesity. Bariatric surgery contributes to weight loss in two main ways:

  • Restriction. Surgery is used to physically limit the amount of food the stomach can hold, which limits the number of calories you can eat.
  • Malabsorption. Surgery is used to shorten or bypass part of the small intestine, which reduces the number of calories and nutrients the body absorbs.

Four common types of weight-loss surgery are:

  • Roux-en-Y gastric bypass.
  • Laparoscopic adjustable gastric banding.
  • Sleeve gastrectomy.
  • Duodenal switch with biliopancreatic diversion.

*What are the symptoms of iron deficiency? (Many symptoms mirror a fibro flare.)

  • Lack of energy.
  • Weakness.
  • Headache.
  • Rapid heartbeat.
  • Anxiety.
  • Hair loss.
  • Brittle nails.
  • Pale or yellow skin.
  • Shortness of breath.
  • Chest pain.
  • Restless legs.
  • Strange pounding sensation in your ears.
  • Craving for ice or clay (pagophagia).

Iron has many important roles in our body. It’s important for the health of our hair, skin, and nails. It also helps make hemoglobin. This is the substance inside red blood cells that carries oxygen throughout our body!

How do we treat this?

We need to monitor our level of iron. We can develop iron deficiency and anemia at any time. Our healthcare provider should measure our iron levels at least once a year. (Every 3-6 months if you are deficient, and have fibromyalgia.)

Red meat, poultry, seafood, leafy greens, legumes, iron-fortified grains, and other iron-fortified foods are all good sources of iron. Dietary changes alone may not be enough to prevent or fix an iron deficiency. We may need an iron infusion. We must work with our healthcare provider to find the right iron supplement plan for us if we are deficient.

(Iron supplement can cause side effects. Many people have constipation and nausea.)

There it is. My issue, could it be yours? Yes, I am the iron deficient, anemic lady, with fibro! I knew I was experiencing side effects from a certain medication and was successfully taken off it. I was aware of my iron deficiency (in the past) and knew I was anemic. After having my blood tested last week, I found out I would need an iron infusion, again. I go to a medical unit in the hospital that handles infusions of all kinds. These cannot be administered like a common B12 shot. The iron is introduced into your system through an IV port.

I will be much more vigilant with my lab work and have set up a current account on MyChart. Some hospitals and clinics provide a site online where you can access all of your health records.

Do you have MyChart available for your medical records?

~Kim

 

I Need to Find the Entrance.

Its been a very difficult time, I am not going to lie. I am trying to find an exit. No. I am desperately trying to find an entrance (that’s it). I need to re-enter my life again. I need to function as a whole person; wife, sister, daughter, friend … I am struggling, but I am trying.

Since the first week of June, I have been flaring. Not an intense, painful, monster flare (like I am used to). No, this one is different. It is an aggravating, irritating, lingering, foggy episode of uncomfortableness and aching that I just can not get to stop! It will not get better! It will not stop. Why can’t I just get through this flare?

I am short-tempered and crabby. I hurt constantly. I am foggy and searching for direction. I am angry and confused … What the hell is going on with me? I can’t sleep, I can’t cry, I can’t even string a sentence together at times! I can not get comfortable! I feel like someone has literally pulled the skin off my body and all the flesh underneath is exposed. I am scared.

The only constant with fibromyalgia is change. If we don’t like how we are feeling, we wait ten minutes, it’ll change. When we like how we are feeling? Wait ten minutes … Well, I’ve been waiting for a month! Is this my new ‘normal?’ This can not be!!!

So what do we do when we are experiencing symptoms? We call our peeps! We check in. We try to find out if anyone else has suffered through this anomaly? What was your last flare like? Ever had anything like this? We can usually count on one or two of our peeps to say, “oh, yep! Been THERE!” This time crickets. I could find no one experiencing the same kind of symptoms for this length of time, ever.

We take inventory. Food not expired. H2O, yes, hydrated. Bathroom habits, nothing’s really changed. Medication? Taking it on time, as scheduled … wait! Medication! One change in medication … when was that? May29th. I had a medication change, May 29th! A new medication was added on May 29th! Well, I’ll be … I think most of you read about my recent hallucinatory episode. A terrifying experience, but an episode that made me start reviewing my history! One little pill. A medication added for Restless Legs Syndrome. That, my friends, is the culprit!

I went off that ‘new’ medication. I am now dealing with increased bouts of restless legs, pain, and insomnia. But. I got off that intrusive, irritating, time-stealing, mental thief of a medication! I see my doctor in about eleven hours from now. We will be discussing my medication.

We must always take note of new medications. I am guilty of not following through on the first piece of medical advice I ever received and pass along this wise information;

“Know why you are taking a medication and what that medication should be doing for you! Know when you started it and what – if any – benefit or quality of life enhancement it is having on you. If you are experiencing side effects, taper off. If it is not doing anything for you, get off of it!”

Do you keep a medical journal?  How do you keep track of your medications?

 

cropped-screen-shot-2018-02-25-at-12-48-43-pm~Kim

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

 

Pick Your Box

Have you ever heard of people talking about a fibromyalgia toolbox? Well, a fibromyalgia toolbox is a real ‘idea’. There is no definition. It is basically an emergency kit for fibromyalgia flares. When you are in a fibromyalgia flare, you are in much more pain, you are beyond exhausted and you may be in a fibro fog. (The Fog of Fibromyalgia).

A fibro toolbox can be made up of things of a tactile nature. Coloring books, journals, activity books, crocheting, knitting, craft supplies and other things that you can do while you are in a flare. If a fibro fog accompanies your flare, many find watching movies you have seen before (because you won’t remember a new one) or listening to specific pre-planned music helpful.

A fibro toolbox can also be a skill set you have learned for working through your pain. Meditation, deep breathing exercises, guided imagery, and/or reframing thought patterns, are examples of a few practices put in place.

Rescue medications should always be part of your toolbox.

So a fibromyalgia toolbox is really just a pre-planned way of handling your fibro flares. Things and/or ideas set aside ahead of time so when you start experiencing a flare, you are ready physically and mentally. Have the items you need in a designated area, room, or tote.

Personally, I use a backpack and have a portable DVD player in my closet. When I have a flare come on, the things that I need are ready. This also signals my husband that it is a flare day when he observes my backpack out and my DVD player running movies.

 

Get your toolbox ready. We cannot control when our flares will happen but we can choose how to respond when they do.

img_1722~Kim

(Return to Exit Strategy, The Three Day Rule.)

 

Hemoglobin and Ferritin … What?




 

The range of normal hemoglobin levels is; 12-16.

 

The range of normal ferritin levels is; 15-205.

 




 

Hemoglobin and iron are proteins in the body. Hemoglobin is in your red blood cells and carries oxygen to your body’s organs. If your hemoglobin is low, this means you are anemic. Ferritin is a protein produced by the body that contains iron. If your ferritin is low, you have an iron deficiency.

 

In October of 2015, I was admitted to the hospital directly after a trip to the clinic where my labs were drawn. My ferritin level (ferritin is the protein that carries iron in your body) was at a one. The normal range for a healthy ferritin level is 15-205. I had just gotten home from my appointment when my doctor called me and said, “You go straight to admitting at the hospital, I reserved a bed for you, your ferritin is dangerously low.” I was confused, could low iron be so harmful I’d have to be admitted? She just said, “Go, go now.” I was admitted immediately given a blood transfusion and three vials of iron, I remained in the hospital for three days.

 

The hospital doctor told me I was close to having a massive heart attack. What? No way! My body was not producing enough ferritin. I knew my fibromyalgia symptoms were flaring, I was beyond exhausted! I couldn’t think straight, I couldn’t walk to the bathroom and back to the couch without having to take a nap. I felt like I was always walking through sand with ankle weights on. Was this all due to low iron? Yes. This time the flare I was having was due to low iron.

 

Here is the scariest part of it all, testing my ferritin level was a fluke. I was in for a regular medical checkup. My doctor noticed I look really pale, but the giveaway was my gums, she looked at my gums and said to her nurse,  “I want to know what her iron level is.” I balked because I had just had my blood panels done … but I learned your iron levels are not regularly tested, she explained that the test had to be ordered separately.

 

I knew I was anemic, my hemoglobin would sometimes reach a ten but usually stayed around an eight. I never knew about ferritin, even what it was or did. I do now! Low ferritin is not traditionally associated with fibromyalgia. Neither is anemia. But low levels of hemoglobin and/or ferritin for a person who has fibromyalgia can cause a severe flare. You will not get over a flare until you raise those levels.

 

You must learn to eat foods rich in iron and cook in cast iron pans. I do both. I also give myself B12 injections once a month and use an iron supplement. Sometimes this is still not enough, so I go in for an iron infusion. I still struggle with keeping my numbers up. I sometimes suffer severe repercussions from the iron infusion, so I need to fully rest for a few days after, this prevents the side effects I can experience. I am still learning how to handle this, but I want to leave you with a word of caution, please ask specifically to have your ferritin (iron level) tested. It is a simple blood test. It is NEVER part of a blood workup and must be explicitly ordered by your doctor.

Ask to have your ferritin level checked!

~Kim