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

Back to Basics

What is Fibromyalgia Syndrome?

That’s a loaded question! Each person experiences fibromyalgia differently… but, going back to basics, I will try my best to explain.

The nervous system of someone with ‘fibro’ looks like this;

img_0493

So, a person with fibro has an overactive nervous system.

You can read more about the nervous system: here.

Signals are being constantly sent to the brain that the body is in pain, the brain answers and we end up with this;

img_0494

Further reading about the effects on the brain: here.

So, the brain is very busy for a person with chronic pain from Fibromyalgia Syndrome. Then we add the cognitive dysfunction, known as fibro fog, that we deal with as fibro warriors.

This is a good description;

img_0496

(Image courtesy of Pixie.)

Further reading about fibro fog: here, and here.

So, the very basic explanation of Fibromyalgia Syndrome is this;

img_0495

(Image courtesy of Pixie.)

In-depth symptoms of fibro and accompanying conditions: here and here.

To sum up this post, it is OK to not fully understand fibro but NOT OK to think it is easily defined. Fibromyalgia is not a cookie-cutter illness. This is a real ‘syndrome’ (which means made up of many co-existing conditions) that is debilitating and extremely painful.

img_0456~Kim

What Flare?

You have probably read that I’ve been in flare mode for almost a month. We sold our home, we close on the fifth of September, very soon. I’m pleased that the house sold at asking price. Of course, a bidding war would have been fun, or not.

The last night in the house on Taylor Street, I sent out an SOS text to my brother-in-law that I needed help. He came, packed MOST of my living room and office. He loaded it all into his truck. Then went and got his other truck and loaded that too, along with various boxes I’d packed. He called his wife, and she arrived shortly after to pack up my entire kitchen. Nice, right? I cannot remember any of it! Not one detail. I was in a full-on flare mode with fibro fog! Needless to say, every box I open is like Christmas morning. I can’t believe all the work they did for me. I have thanked them profusely, but how does one know if that’s ever enough?

The change that comes with living out of boxes in a semi-permanent living environment is unsettling. My husband and I have taken up residency at our family’s lake home. Well, I’m a part-owner with my remaining five siblings, so it is part mine. I mean, it sounds weird to say ‘my’ lake home, but I do pay taxes on this property. So, yes, my lake home.

My brother, Kory, was in the military. When he was 37, he was diagnosed with a very aggressive form of cancer. He lived for just seven weeks after that diagnosis. He was able to instruct us on what to do with his life insurance. He was still single, but family meant everything to him. This lake home stands on the land where my father’s boyhood home stood. This property has been turned into an LLC and will remain in our family for generations to come. It truly is a gift. I would’ve chosen my brother over this vast, six-bedroom lake home in a heartbeat, but that wasn’t to be. (Rest in peace Kory.)

I am rambling, aren’t I? Yes, I am.

The point of this post was to tell you that last night I was in some sort of cognitive blackout caused by an extremely stressful and painful day. My fibro fog has been happening very frequently. This also causes, S-T-R-E-S-S! I wrote a post at one point about a theory I had about fibro fog. Our brain allows us to escape from our painful reality by resorting to a dysfunctional cognitive state. It basically shuts us down to ‘reboot.’ It still is only my theory, but, I believe this is what happened last night. My husband said I was very cooperative, I listened to him, and he guided me into bed so I wouldn’t hurt myself. (I swear if he roofied me again… just kidding!)

I feel very different today. Still some intense pain off and on but overall, I am better physically and much more so mentally. I will begin updating you on our new beginning next week… I am officially going to start documenting the process of our continued search and purchase of our 5th Wheel and truck. We are narrowing down the options so I better start telling you about it all.

I have a new tagline. After much thought, a decision has been made!

drumroll…

I Tripped Over a Stone.

“A Fibro Warrior finding freedom as a rolling stone.”

What do you think?

Live your best life!

 

img_0986~Kim

Escaping Through the Fog

I have some thoughts to share with you. I don’t know if I am right, but this makes sense to me. How do we escape the chronic pain we are in every day, 24 hours a day? I think the answer is Fibro Fog. Is it possible we are dreading the very fog we should be welcoming?

Those of us who suffer from chronic pain know that our fight or flight system is in overdrive! Firing random pain signals throughout our bodies. Our brains, not being able to keep up with the constant demand for action from these signals eventually shuts down our conscious thought. This cognitive dysfunction is what is often referred to as fibro fog. (Also known as brain fog or cog fog.) 

Chronic pain patients don’t have a scale for their pain. Chronic pain patients go through stages of suffering. We either can associate or disassociate with what our reality IS. The reality of the pain we suffer with on varying severity levels. When associating, we are feeling the actual pain and physical suffering. When we disassociate, we busy our minds to try not to feel the reality of our current situation.

Eventually, we reach our individual level of intolerance. We can not continue to suffer from the unending pain! We enter a state of numb; it is a state of cognitive dysfunction. When in a cognitive fog, we will not remember that time. Retention is obsolete. We lose time; hours, days, weeks. Our brain has to rest, we need to rest… the fog has enveloped us. Not so much relieving our pain, more like numbing our brain to react to it.

Finally, we can be in a fog and still have pain, but we won’t remember most of it. I believe fibro fog ‘happens’ to allow us time to be unaware! We are put into a state of disassociation by a brain that knows cognitively what is better for us when we do not. Fibro fog is unavoidable and seemingly random. I am starting to believe it is really not random at all!

Do you think we escape through the fog?

img_0986-1~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:

IMG_0559

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

 

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

 

The Fibro Fog Defense

My husband was looking for his keys and was muttering something about losing his keys all the time. I said check The Basket. “The Basket” sits on the buffet in the dining room. I put everything I find lying around the house of his in it. Because …  there is a trail of items he leaves in his wake every time comes home! Keys, wallet, phone, cap, then I heard him mutter fibro fog.

I said,  “Oh no, you can NOT use the fibro fog defense!”

Really? I mean, r-e-a-l-l-y? He can’t find his keys, and now he has fibro fog? How did he get it? Did he catch it from me? Maybe he is allergic to me. No way! The fibro fog defense is all mine!

You have to remember that fibro fog is a cognitive brain dysfunction. It affects your ability to concentrate. You have memory problems. Speech can easily be interrupted as you search for words you know but can’t remember. All of this can cause mild to severe confusion.

Fibro fog is not a case of the ‘lost my keys’ or ‘can’t remember that person’s name’… that’s poor memory! That can be fixed! Cognitive dysfunction cannot be fixed. A person with fibromyalgia has low levels of dopamine in the brain. And when given a scan of the brain, it shows decreased blood flow to the brain when an individual is experiencing a decrease in cognitive abilities. That is what cognitive dysfunction is. That is fibro fog! (For more information read Dopamine and the Fibro Brain.)

Now that we had established who had the rights to the Fibro Fog Defense, we decided to think of outrageous things to do and then blame it on ‘the fog’… that was great for a laugh, but then I started wondering if a Fibro Fog Defense would work for real?

I have an idea!

(Just to be safe, who can I call for bail money?)

Version 2~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

Welcome to Fibro for a Day!

Many people have experienced being tired, exhausted even. But chronic fatigue is more than being tired. It is waking up after a full night of sleep and feeling like you never slept at all. There is no escape, no quick fix, you are in a fatigued state, always. Often you may not be able to sleep a full night through. Sleep disturbances are a big part of Fibromyalgia Syndrome.

You get crowned with both, fibro and fatigue!

You go for the coffee and have cup after cup until you become thoroughly agitated. Then you probably will go into a full-blown panic attack. You will shake, sweat and cry and find it very hard to breathe. You are confident you will die. I will choose to feel the awful fatigue of fibromyalgia over having a horrific panic attack any day.

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Then there is the daily pain. It is either through the roof (you’d be having a fibro flare which is an increase in pain and fatigue) or pain gnawing at your very core and just – will – not – stop. What does it feel like to have fibromyalgia pain?

 

 

-Ever ran track? It feels like the second day after the first practice of the season.

-Ever played basketball? It feels like the second day after the first practice of the season.

-Ever had the flu and been in bed an entire day, getting up only to throw-up? Your body aches!  It feels like the flu.

Then we get ready for those fibro fog days, this is when you experience a literal dysfunction in your brain. You cannot connect the dots. We that have experienced this have learned our tricks, but we still look and sound drunk to others … that can’t be helped. We try to stay isolated, and we depend on our lists that tell us what to do, where things go and in what order we complete a task. We use notebooks, journals, post-it notes, and they become our memory on how to make it through one single day or for as many days as the fog lasts. We can’t remember words. Completing sentences and regular everyday tasks; like showering and getting dressed, is often confusing and cannot be accomplished without notes.

I will leave you with some good news about fibromyalgia. If you don’t have it … this day is over now, and you can go back to your life. My days with fibromyalgia will continue until a cure is found.

IMG_0299~Kim

You Have Always had the Power.

I recently read an article in The Mighty about a woman who wrote what her 5 worst symptoms of fibromyalgia are;

  • Guilt
  • Grief
  • Anxiety
  • Fatigue
  • Brain Fog

I do not disagree! These are all symptoms people experience with fibromyalgia and yes, they qualify as some of the worst. These happen to be hers. I see three symptoms on her list that can be overcome and two that can be managed.

Remember, these are ‘symptoms’, not personality traits. Guilt, grief, and anxiety are simply symptoms that are present in the stages you go through when you are in the early years of your disease. Fatigue and brain fog will be with you for a long time. They want to be your “besties”. Just say no.

Let’s address guilt. You feel guilty because you can no longer do the things you used to. The truth is you are a different person now. You must rethink and focus on what you CAN do. There are so many things that can bring purpose and joy to your life. Just look for them, seek them out and do them! What hobbies do you like but never had the time for? What books have you wanted to read but never had the time? What instrument have you always wanted to learn to play?

Grief is a variable time issue for those of us with Fibromyalgia. It is not linear, we visit grief many times. We grieve for our old lives. We grieve for our careers, lifestyle, maybe even loved ones who no longer understand us. We grieve for lost relationships and for the pain we know we will feel every single day. We must grieve to get to the next stage of our journey; acceptance. Be still and allow yourself to grieve. Grieve for it all and for as long as it takes because the old you is now gone.

Anxiety. Severe anxiety can be handled with medication. But regular old anxiety comes from the unknown… basically, that is what we face every day. We do not know how we will feel, if your mind will be clear, or if any appointments we made will be ‘just too much’ that day. Chronically ill individuals may live in a perpetual state of anxiety because we have so little control over our illness. So choose how to react to these uncertain circumstances. There is your power. When a situation arises that you haven’t planned for, choose your reaction. Choose not to react if at all possible.

Fatigue. The first few years while you are learning to manage your fibromyalgia your fatigue will be at its highest! Your body is always in pain, you are still pushing to ‘get everything done’. You have not learned to pace yourself. You may not be taking your medications or supplements on time. You feel overwhelmed by the enormous amount of information being thrown at you. Fatigue will let up, it won’t go away. Each person dealing with fatigue will come to know that it is a very individual journey.

Brain Fog. Here is another symptom of Fibromyalgia that will become less frequent once you have established a schedule for yourself, including scheduling a brain fog day so you have nothing to be anxious about! Pacing, making lists, placing notes for yourself to help you get through a brain fog day. Here again, planning for the worst but hoping for the best is where your power to manage your symptoms lie.

Take back your power over these symptoms.

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