I Met a CatFish.

I don’t really care for crowds. I’m not an extrovert. I was before fibromyalgia but now I prefer to stay pretty much isolated. It is easier to stay calm; prevent fibro flares and fog … At times I feel very little control over my health but I can control my surroundings. This gives me some of my power back.

It is an ordinary Tuesday and it’s almost two in the afternoon. I have fed my dogs, myself, and checked on my Facebook group. Fibromyalgia Talk with Kim, Karen, and Andrea. I am an administrator of this group with these incredible ladies. I answered a few questions, enjoyed some ‘admin’ group chats, and posted some relevant information.

When you are an administrator for a support group, you tend to become very over-protective. This is my group! These are my people! I am concerned for them, about them. And you may wonder, “why”? How did this attachment form? Why do you care so much? You don’t really know these people. You are not getting paid or punching a time clock to report for work … “why”?

This group has allowed me to find purpose. I have fibromyalgia now, forthese-people. I listen and I try my very best to provide answers or resources to what is so very hard to understand. I research and write for this group. I spend time with this group. I care about these people! I want to help, to pay it forward, as I was helped by others on my journey with fibromyalgia. There is no better answer to “why” than that.

The flip side is I am cared for by this group. They allow me to lead. They come to me with their questions and concerns because they believe I can help them find answers. They believe I will do right by them and I try my very best to meet their expectations. They have allowed me to find a purpose. This is nothing short of a gift! I have received a gift.

We had a “catfish” in our group. A person, a man we think, pretending to be a woman with fibromyalgia. Helene Pulinski [he-likes-pulling-shit] is the name used on Facebook. In a matter of hours we discovered what was happening. This individual poured his/her very dramatic story out and then waited for the group members to come to his/her aid. And come they did to welcome him/her and support him/her. What did Helene Pulinski do? Waited for them … then tore them down one by one. HELENE PULINSKI, may karma knock on your door. Seek help because, NO, you are not handling your issues at all. To me you are now nothing more than a passing thought … I will never write or speak your name again.

The group has become tighter, stronger, and more resilient! We have stronger restrictions for joining our group, longer wait times … WE have banded together! We fought back and are stronger for it. This group of Fibro Warriors roared!

I don’t understand the nature of people who find joy in hurting others. Maybe that is the only way they can grasp ‘feeling’ anything at all? Maybe that is a coping mechanism for their extremely limited amount of coping skills. Is it ignorance? No, I don’t believe it is ignorance. When a person intentionally seeks out to do harm, that is a malicious person. Some people really are just mean.

A rattlesnake is a rattle snake,

it doesn’t matter how gently you treat it,

it will strike. That is it’s purpose.

~Kim

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Power Poem Friday.

I was considering the feelings I have gone through of loss and grief. These emotions about losing my old self. The strange thing is, I appear no different on the outside. I know what I feel like inside at times; empty. Then I started to consider what others must be thinking. My outward appearance is the same. But I am a different person now. I wonder if they feel loss and have grieved for the old Kim? I don’t have the answer.

 

attic

 

IMG_1901 3~Kim

“Six Healthy Habits” to Develop and Live Your Best Life with Fibromyalgia.

These are six healthy habits to develop in order to live your best life with fibromyalgia. These will take time to develop. This will take practice and real life experience! In the end, if all six habits are developed, you will lead a successful life with Fibromyalgia Syndrome.

SIX HEALTHY HABITS

1. Know thyself.

You have been diagnosed. This is a time of discovery. You finally have a diagnosis and you must figure out what that is, what does this diagnosis mean? How do you define it? How will you explain it to your loved ones? How will you explain this diagnosis to your co-workers? Your employer? What are you dealing with now that you have been crowned a Winner in the Fibromyalgia Syndrome Pageant of Disease? Know thyself.

2. Adjust your Attitude.

You must take time to grieve before fully developing the second habit. The old you is gone. That person no longer exists. Once you have said your goodbyes, you are ready to learn about the new you. Adjusting your attitude can be very positive and very exciting! Who is the new you now as you begin this new life? This new journey? What are your new interests with-in your limitations? What new ideas have you come up with to try as you are learning to live with fibromyalgia? Go after these answers in a positive manner. Fibromyalgia is not a death sentence. Adjust your attitude to find the joy in the little things. Learn new things and find the positives in each day. They are there if you just look for them. Adjust your attitude.

3. Develop your own coping skills.

You are learning how to have some control in your life. You may not be able to control  fibromyalgia but you can control how you react to it. How do you handle the daily pain and discomfort? How do you react to fibro flares and fibro fog? You have a game plan to put in place. Coping skills. You will learn what works for you. Medications, supplements, meditation, massage, water therapy, physical therapy, essential oils and the like. You will know what to do and why it works for you. You have learned skills.  Develop your own coping skills.

4. Develop your sense of purpose.

Now what? You know what you are dealing with. You may be working but probably not. You have learned to adjust your attitude to a positive one, and you can manage your fibromyalgia symptoms. What are you here on this earth to do? What you may have once thought was a hobby may just be your purpose! Find what lights that fire back up in your heart and do it! Be smart about it because you know thyself. Find the fire that makes you wake up and look forward to living the day. No one knows what drives you, but you! Develop your sense of purpose.

5. Find a healthy support system.

You have a chronic condition. You are in this for the long haul. Your family may love you unconditionally but it is not they who have been sentenced to live with a chronic illness. You want to maintain a relationship with your loved ones and friends that is not consumed by the fibromyalgia monster on a daily basis. Find a healthy support system outside of your family and friends. You are still going to have bad days with flares and fog. You know this. So handle it by seeking out healthy sources you can turn to and get through the tough times as well as share the good. A support group, a therapist, a member of the clergy, it’s up to you to find the right fit. Find a healthy support system.

6. Advocate for awareness.

You have become your own encyclopedia by the time you have developed the previous five habits. Now, to develop the sixth habit, you can be an advocate and help in the awareness effort of Fibromyalgia Syndrome. Share the wealth of information you have! Knowledge is power and you have taken back your power from this chronic disease. You may have fibromyalgia but it does not have you! Be present and live your best life. Advocate for Awareness.

 

IMG_1901 3~Kim

 

 

 

Dopamine and the Fibro Brain.

“People with Fibromyalgia are deficient in Dopamine in the brain.” -Dr. Patrick Wood.

I was watching a lecture given by Dr. Patrick Wood on Fibromyalgia New Insights, New Hope.* He was sharing his brain scan results with a number of medical students. I was completely shocked by his lecture and what his studies have found so far. I will write about a highlighted portion of his lecture that presents proven data. The other interesting studies he raised are still hypothesized theories to be proven. Until proven, these theories are still controversial arguments in the medical field today. I will write about the factual, proven information he presented during his lecture.

Just what is Dopamine? Dopamine is a neurotransmitter, this is a chemical released by nerve cells to send signals to other nerve cells. (Hello, I have been sent to stop your pain!) Synthetic Dopamine can be given, usually intravenously, to assist with anti nausea agents, Restless leg Syndrome and ADHD. Its peripheral effects also make it a valuable treatment source in cases of shock or heart failure, especially in newborns. However synthetic Dopamine cannot reach the brain from the blood stream.

People with fibromyalgia do not produce enough Dopamine in the brain to produce pain relieving natural resources in the body. Dr. Patrick Wood is a family practitioner but became interested in working with fibro patients after his “superiors” said, quite bluntly, they did not believe in fibromyalgia. Dr Wood was shocked to learn fibromyalgia is known as the “F” word in the medical community. Dr. Wood began working with fibromyalgia patients, focusing on pain response by taking pictures of the brain when painful stimuli was administered to both a fibromyalgia group and a “healthy” test group.

Brain MRI’s and PET scans confirmed that when administered painful stimuli the brain did not produce dopamine in the individuals with fibromyalgia. But in those same individuals, the body released vast amounts of opioids and substance P which occur naturally in the body to fight pain. The lessons learned so far is that the brain appears to be asleep because it is not producing the needed amount of dopamine to  respond to painful stimuli. At the same time, the body is in overdrive producing pain relieving endorphins and is overloading the body with these pain responding substandard substances (opioids and substance P). This overabundance has been confirmed by taking samples from the spinal fluid. When a fibromyalgia patient is put on pain relieving medications, they are already naturally full of opioid pain fighting endorphins. This is why it is so difficult to medicate the individual with pain relievers. The dose of these pain relievers must vary greatly from individual to individual as the pain experience from the lack of adequate Dopamine in the brain is difficult to relieve.

Finally, I must mention another point from Dr. Wood’s lecture. Low iron. The fibromyalgia patient that is low in iron, has a difficult time producing Dopamine. Iron produces Dopamine. These low iron levels work as an invitation for fibromyalgia fog, Restless Legs Syndrome and fibromyalgia pain and flares. Iron levels must be checked and, if low,  brought to a normal range to assist with making Dopamine in the brain.

In conclusion, there is no doubt that the brain of a fibromyalgia patient is smaller (atrophied) and shows damage,  the question is;

“Did the brain become damaged due to the fibromyalgia diagnosis or was the brain already damaged and that lead to the diagnosis?”

The  answer to this question is not known. It is known the brain can get better. The brain can heal. But the questions remains what came first, as with the chicken or the egg?

Dr Wood was asked if there will be a cure for fibromyalgia, his answer? “The Future is Bright.”

IMG_1744~Kim

*To see more of Dr. Woods lecture go to YouTube. Fibromyalgia New Insights, New Hope. Dr. Patrick Wood lectures on this site and it is now on YouTube. Very interesting additional information is presented!

Power Poem For Fibromyalgia Friday

It is May 12th, Fibromyalgia Awareness Day. And I have written my power poem to Fibromyalgia. It has taken time, expense, education, and endurance to be able to be able to now say; although I may have fibromyalgia it does not have me.

 

 

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Dear Fibromyalgia

 

IMG_1744~Kim

The Fibro Seven.

Fibromyalgia comes with so many symptoms and coexisting conditions it is difficult to  know if you are suffering with 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 ‘Fibro Seven’.

  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 Fibro. It get’s messy when someone asks you to tell them what fibromyalgia is and you start listing off other chronic conditions and symptoms with your fibromyalgia symptoms. If we want to get the message out about Fibromyalgia Syndrome, we must be specific about what fibromyalgia entails.

When you are asked about your fibromyalgia symptoms stay on topic. It is too confusing when you rattle off  restless leg symptoms, rheumatoid arthritis symptoms, Lupus symptoms, allergies, and other possible coexisting illnesses you have. These are no less important! These are illnesses you are battling right along with your fibromyalgia! But for now, we must be clear about fibromyalgia and it’s symptoms. Just the seven I listed above is a lot for anyone to understand. Try to be on point with symptoms of fibromyalgia so the person who wants to understand fibromyalgia, can.

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May is Fibromyalgia Month and the 12th is the recognized day for Fibromyalgia Awareness. We should constantly be researching and learning about our disease. May should be our month of sharing publicly what we have studied and learned that year. Things are changing fast as more attention is now being paid to this little monster we call Fibromyalgia. What was once thought to be fact is fiction. What was once called a “garbage can disease” is now registered in the International Classification for Diseases Classification Manual (ICD-10-CD) with its very own diagnostic code, M79.9. What was once unknown is now known. Stay current. Knowledge is power and power affords us the ability to take charge of our fibromyalgia.

IMG_1744~Kim

Happy Birthday Fibromyalgia…?

On October 1st, 2015, fibromyalgia finally was entered into the International Classification of Diseases Classification Manual (ICD-10-CM) used by physicians around the world and given its own diagnostic code; Fibromyalgia M79.9. So in actuality, fibromyalgia became a legitimately recognized disease in October of 2015. Fibromyalgia is not even 2 years old. Yet fibromyalgia Awareness has national awareness day, May 12 and a colored ribbon, purple that it shares with a few other chronic illnesses.

Fibromyalgia seems to be … trending … as of late. It seems someone knows someone who knows someone who has it. There are T.V. commercials for fibromyalgia pain medications. There are advertisements for supplements and essential oils promising to reduce symptoms. Many new therapy programs are forming and claim to not only treat fibromyalgia, but cure it. People are beginning to come forward stating they have fibromyalgia. What are the pros and cons of this? The pros being awareness and the cons being incorrect information.

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Fibromyalgia is real and has been around for many years. It is believed that Florence Nightingale herself had fibromyalgia! Although controversial at first, she was bedridden with fibromyalgia in 1986. The catalyst was said to be an infection she had years earlier.  Morgan Freeman has admitted publicly to having fibromyalgia as has Sinead O’Connor. The point is that even people with well-known public profiles have stepped forward and spoke up that fibromyalgia is something they have been diagnosed with. These public figures are finally feeling they can speak about it. Fibromyalgia awareness is happening before our very eyes. It is about time this invisible illness is brought out of the darkness and into the light.

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With the Awareness comes uniformed ideas about what to do with this debilitating syndrome. False information can be fed to very vulnerable chronically ill individuals. You may believe the claims and spend a lot of money believing that their treatment will be the one that provides you with a “cure”. Fibromyalgia is chronic, there is no current cure. Any program or person claiming otherwise does not really know what fibromyalgia is. It is chronic and there is absolutely no cure – yet.

Finally, I encourage you to become your own encyclopedia. Fibromyalgia does not affect people in the same way. Our chemical make-ups are different. We may have different catalysts that caused our fibromyalgia; physical trauma, stress, illness, genetics, all leading to different symptoms presenting at different times. There is more than one way to treat fibromyalgia the trick is to find your way. You have to seek out what works for you. This will take time and energy but you can do this! You must.

Remember May is Fibromyalgia Awareness month and the 12th of May is the nationally recognized day of Fibromyalgia Awareness. The more we learn, the more power we will have over this condition. Don’t be afraid to trust the information you gather but always verify it by checking your sources!

IMG_1744~Kim

Power Poem for Fibromyalgia Friday!

When I was a kid, I wrote all the time! Stories, poems, plays. I loved writing poems the best but I was never one to be able to sit down and just be able to write a poem. I couldn’t write on demand. Usually, all of a sudden, these words would come and intrude into my life until I wrote them down! I tried to always remember to have a notebook with me but sometimes a napkin, a paper plate, even the bottom of a milk carton would do!

It has been a very long time since these word ‘snowstorms’ have visited me. This has only resurfaced in the last year or so… but I am once again feeling the urge to write, the urge to make sense of these words that creep into my head. So, now I create what I call a Power Poem. This type of writing affords me the ability to write a concrete message that makes sense to me. Maybe some of these Power Poems will make sense to you too? I have posted a few of these in the past but Fridays, I think, will be Power Poem day on I tripped over a stone…

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Enjoy your weekend!

IMG_1744~Kim

Laundry Soap for us Gentle Fibro Warriors!

I have been following Kelley’s blog; kelleysdiy. I just want to wrap her up and give her as a present to myself. I suppose I should ask her first? She has so many neat ideas and her crafts just bring me joy! You must check out her site. Here is a laundry detergent soap that will save you a lot of money in the long run. Us Fibro Warriors learn to become thrifty out of sheer necessity. I am going to make this soap, I hope you try it out too! Plus it looks like there are less chemicals, less chance for us to have allergies to this soap.

 

kelleysdiy:

If you have been following my projects, you know I am very frugal. Saving plastic jugs, bottles, upcycles, trash to treasure, etc…love to be frugal.Frugality comes in many forms and homemade laundry detergent is a great one. If you love saving money, I have the perfect project for you. For the typical size family, you […]

via DIY 2 Yrs Laundry Detergent For $45 — kelleysdiy

Thanks for the great ideas Kelley and the awesome laundry detergent recipe!

IMG_1744~Kim

 

The Fog of Fibromyalgia

Fibrofog

Sounds fun doesn’t it? This is a symptom that accompanies Fibromyalgia Syndrome. These episodes of fog may or may not occur with a fibro flare. If you are diagnosed with fibromyalgia you most likely will periodically experience fibro fog. I have my theory as to why we experience these fogs, but it is only a theory. Chemical imbalance? Dopamine receptors malfunctioning? Too much stimuli? Too much pain… whatever the case, checkout time! You find yourself in a fog. It is frustrating because you are aware you are experiencing cognitive difficulties! A fibro fog does not increase the ever-present fibromyalgia pain but it does make managing your pain more difficult.

You search for words, you search for familiar tasks, you search your memory, in and of itself! Many people think you are drunk or on some serious illegal drugs. Walking can become a challenge, dressing looks like a clown show, trying to complete a task or follow a schedule is almost impossible. Retaining any information is a joke and attempting to remember information is not achievable in this state of fibro fog. I can watch a movie while I am experiencing fibro fog and honestly not remember one single thing that happened. I do not even remember I watched the movie!

I really believe once everything gets to be “too” much; pain, stress, lights, smells, etc. Your brain simply goes into a fog to attempt to alleviate the overwhelmed state you are in. I would go so far as to say fibro fog can be a fibromyalgia sufferer’s best friend but the scrutiny of those around you can make it a wicked, whiplash situation.

“Have you been drinking?”

“What are you on?”

“Do you remember what you said to me?”

“What the hell is wrong with you?”

Fibro fog. Fibro fog. Fibro fog.

Trying to be social while experiencing a fog is not advisable. Going out in public should be avoided. Never drive! Don’t call, don’t text, don’t write, unless you like a wicked whiplash coming at you once the fog has cleared. The fog will pass! The repercussions may not.

Protect yourself when you are having cognitive difficulties. Get through the episode and then move on. If during the fog you crossed paths with someone who doesn’t understand the state you were in, let it go. It’s not like you could explain it to them while you were experiencing the fog, your words have left you. They will either believe you or they won’t.

I have a little card I printed out and I keep it next to my phone for just such uncomfortable occasions. I’m still experiencing some backlash because I did not know how to explain my fibro fog episodes. In the beginning, I did not even know what they were? Now I am prepared and I want you to be prepared as well. Prepare!

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Live your best life!

IMG_1725~Kim

Fibromyalgia Flare! Again.

The fibro flare is an increase in symptoms that one with Fibromyalgia Syndrome suffers from time to time. It is cyclic in nature and although we can guess at what will trigger a flare, we can’t always see it coming.

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A flare is intense and it is painful. A flare is experienced differently by each individual just as the intensity of each flare is experienced differently every time you have one. A flare can come at you quickly and unexpectedly. This causes incredible stress that only intensifies the length and depth of the flare. Having a fibro flare is part of fibromyalgia. You will flare.

So what do you do? You prepare.

There is something called a Fibromyalgia Toolbox. What is it? There is no definition. A fibro toolbox are items or actions you use to get through a flare. Some have a special room with all the things that give them comfort surrounding them. Others have a favorite chair and may use meditation and/or games on their phone or iPod to play. Heating pads and tens units are favored by some. Some go directly to things of a tactile nature; sketching, crocheting, journaling. Others simply sleep. Sleep is what the body craves but many individuals with fibromyalgia Syndrome are unable to sleep through the pain. There are medications to consider for use during flares; muscle relaxers, opioids, medical marijuana. Alternative to medication are natural remedies; oils, teas, herbal supplements. The Fibromyalgia Toolbox is very unique according to the individual that is experiencing the flare.

This is my Fibromyalgia Toolbox.

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This is what I keep in my Fibromyalgia Toolbox.

I am one of the unfortunate, ‘unable to sleep’ type of fibro flare individuals. I have to keep my mind busy, my surroundings quiet, and be able to move from couch to bed and back again. Sometime we are at our family cabin, I am ready for traveling with my Fibromyalgia Toolbox and that is why I picked a backpack. I always bring my backpack and portable DVD player so I am prepared. I cannot stop a fibro flare but I can control my reaction to it.

Fibromyalgia Flares happen. Again and again. Sometimes you realize you over-did it and now it’s payback time. Other times you are taken by surprise. Again, we can guess what may cause a flare but there is no way to prevent one. Be Prepared. Take control of what you can and remember the flare will eventually end. It may be a day, a week, two weeks or more but the increased pain WILL END. Stamina. Just get through it by using whatever you need to because there will be another one and another. Being prepared makes it less awful.

You got this!

IMG_1650~Kim