Fibromyalgia Is AutoImmune ...NO! It's NEUROImmune! ..NO! It's AUTOIMMUNE! Part 1

 Oh my goodness.  I took it upon myself what? About 11 years ago?  Maybe 12 years ago?  To try to start learning every single bit of info about Fibromyalgia as I could.  I then in turn set out on a mission to educate every single person I could on this horrible, disgusting, vile disorder I could.  On the truth about it.  From the $hitty quality of living those of us with it have, to the dire need for more research to try to understand it and treat it.  To it being taken seriously by not only community and family members, but by others in the medical field as well!  

About the time I was diagnosed and cried, and refused to accept that I "really" had fibromyalgia, something there isn't a cure for, new reseach was saying that FMS had at first been thought of as being an autoimmune disease but that actually it wasn't classified as a "disease" at all, that it was classified as a "disorder".  That it actually wasn't autoimmune either, it was NEUROimmune.  It stimulated in the brain.  I cannot tell you HOW many times I wrote that. I talked that. I corrected people. I had people get mad at me and fight with me about it.  I was being treated by an internationally known rheumatologist at The Cleveland Clinic, and she taught me the current "how's & why's" of it being neuroimmune rather than autoimmune.  Let's now fast forward to July 1, 2021.  An article titled "Fibromyalgia Likely The Result Of Autoimmune Problems" in Science Daily science news rocked my world!

This college.  More specifically, this exact building/department of this college, has now changed it all once again.  Kings College London, department of psychology and neuroscience teamed up in collaboration with the University of Liverpool and the Karolinska Institute, to do a new study.  THIS study, led proof that FMS IS a autoimmune disease.  

"Professor Camilla Svensson, the study's primary investigator from Karolinska Institute said, "Antibodies from people with FMS living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings. The next step will be to identify what factors the symptom-inducing antibodies bind to. This will help us not only in terms of developing novel treatment strategies for FMS, but also of blood-based tests for diagnosis, which are missing today."

The above quote that I've pulled straight from the Science Daily article, sounds pretty good. It lends HOPE, once again.  HOPE. There's that little four-letter word, once again.  

The premise of this study, was that they injected anitbioties from people living with Fibromyalgia (from 2 different countries) into mice.  They also injected antibioties from people that do NOT have fibromyalgia, into mice.  The mice that were injected with the antibioties from people with FMS, developed clear and concise symptoms of FMS.  Obviously, the mice injected with antibioties from people that don't have fibro did not develop those symptoms.  

Now, here's where things get really interesting to me.  The mice that had been injected with the antibioties of people living with fibro, returned to "normal" once those antibioties cleared their system.  WHAT?!  You mean if the antibioties can be cleared out of the body, we wouldn't live the life we currently have to lead?  Feeling drained of EVERY. SINGLE. OUNCE. of enegry?  Being in PAIN every single day of our lives?  The sleep disturbances, the cognitive delays. Feeling like our joints have had a vat of concrete poured into them. All of that could be GONE?  Umm ...are we finally talking that a cure may be on the horizon?!  Or even as I've b!tched, moaned, begged, and pleaded for all of these years "At least a solid, universal treatment plan that would work for EVERYONE"??!  It sounds like it may be feasible, folks.  It's too unreal for me to even be able to comprehend at this point in my life.  

Umm, yeah.  More about where/why this photo of me came about, in another post that will be on a totally different subject.  I just thought the face I was  making here was a little fitting for the way I'm currently feeling at this moment haha.  But anyway, the article goes on to talk about how this could lead to having a true blood test to diagnose fibromyalgia with in the near future, as well.  If we had THAT in hand, it would be a whole heck of a lot harder for doctors to refute the reality of FMS.  Because as I'm sure most of you have personally encountered in your own lives, there are still doctors that disbelieve, everywhere you turn.  -That still sickens me as well lol.  You can read the whole article by going to THIS LINK

Now, it's been an entire 14 months to the day, since this "new" study was published.  What is the current update to this study?  What more has been accomplished in the past 14 months since this hot news hit the press?  Dear Lord, please don't tell me "there haven't been funds to continue this research" or I swear I might have a tantrum, a full blown MELTDOWN, like my 2 and 3 year old granddaughters have been known to have on an occassion.  Or two. Lol  Will I even be able to get an update on it?  That I don't know.  What I DO know though, is that I will give it my best shot to get those answers for you guys.  For myself too, who the heck am I kidding?  I want to know every bit as badly as you all do.  Therefore, I solemnly swear that I will reach out to every single person  listed in this article asking for an udate to the study.  -Every person listed in it, that I'm able to find an email contact for anyway haha.  That means that I just added another *goal* to my to-do list for tomorrow.  I have to dig for some email contacts for another area of my life, so I'll just tack these on. 

Stay tuned, my Fibro-Froggies!!  I'm praying I have more info for you, in next weeks blog post.  Keep your fingers crossed and remember to "Never give up HOPE.  Because without HOPE, you don't have anything".  

It's All In Our Heads

So what makes my blog a little different from others out there, is that I always keep it real.  I don't hold back and tell it like it is.  That's why I'm telling you all, Fibromyalgia is all in our heads.  Ok, ok, I know that at least a few people reading this immediately jumped to conclusions and probably started getting pissed when they just read that lol.  I don't mean it in the way that one jumping to conclusions would think.  I'm not saying it's made up or fake, I live with it on the daily.  I know how real it is.  Our pain though, is signals that reach different parts of the brain, then the brain tells us that we hurt in a certain area.

There was a new study published in Scientific Reports on January 10, 2018 that addresses the brain activity in patients with Fibromyalgia.  The study looks at explosive synchronization (ES) as the reason.  What is ES?  Well, you've got me.  I completely understand all of the scientific talk in this study don't really understand it at all.  Even googling ES and wanting to rip my hair out while gouging out my eyes reading for about an hour, I still don't really understand it.  The conclusion is that "we suggest that this could serve as a novel theoretical framework and quantitative approach to modulating chronic pain through the conversion of an ES brain network to a non-ES network using brain stimulation methods."   

This was a small, phase II study conducted at the University of Michigan. Although the study had it's limitations, it gives HOPE that maybe some day a cure will be found.  I'm just thankful that no matter how limited, some research was done.  We need so, so much more research.  If you've been a follower of my blog/facebook page for very long, you know that the lack of money and research into this uncurable monster we live with absolutely infuriates me!  

You can read this study in full, by clicking HERE

At the beginning of every year I always say "Maybe this will be the year that our cure is found."  Well folks, maybe 2018 will be the year that our cure is found.  We can only HOPE and pray.  Yes, HOPE is still my favorite word.  Without HOPE, we don't have anything.  

Love & Gentle Butterfly Hugs To You All

Adolescent Fibromyalgia Research Study Enrolling Today

Thank you for being a reader of The Fibro Frog. I am writing to share some information about a clinical research study that may be of interest to you. Research studies contribute greatly to the overall progress in understanding and treating diseases and The Fibro Frog supports that mission.

Adolescent Fibromyalgia Research Study Enrolling Today

Does your child suffer from widespread, unexplained body pain that impacts their daily routine?

If so, local research study doctors are studying an investigational medication to see if it can help manage symptoms associated with juvenile fibromyalgia in adolescents.

If your child is between 13 and 17 years of age, and has juvenile fibromyalgia or is experiencing unexplained aching, stiffness, fatigue, or trouble sleeping, he or she may be eligible to participate in a clinical research study.

• No-cost investigational study drug
• No-cost study-related care from a local physician

Visit www.FibroStudy.info anytime, 24 hours a day, seven days a week.

WWW.FibroStudy.info

   

Sincerely,

Amy Mullholand

Founder of The Fibro Frog

Progression Of Symptoms

The medical community as a whole says that Fibromyalgia is not a progressive illness.  I highly disagree with that.  Even my family doctor told me that I'm getting worse.  This is an area that I'd love to see more research in.

My symptoms progressed from a child to a teen ager.  From a teen ager to a young adult.  From a young adult to middle age.  Now in my mid-40's I can see and feel a difference almost monthly.  I hate to see what kind of shape I'm in when I reach my mid-50's and beyond.  I worry that eventually I'll end up in a wheelchair.

I'm by no means an expert; I only have my personal experience and the countless stories of others that I've met, but there isn't a doctor out there that could convince me that Fibromyalgia isn't progressive.  Everyday pain is worse for me.  Flares come closer together, last longer, and are more intense.  What is your personal experience?

I handle the pain, because I have to. There isn't any other choice.  I must say though, it becomes harder and harder to deal with on a daily basis.  I awoke this morning with my lower back feeling as if someone poked a hole in it while I was sleeping, and poured it full of concrete.  It still feels that way.  The pain and stiffness just won't go away.

Constant, nagging pain wears on a person's mental state.  It's easy to allow yourself to fall into the dark hole of depression.  That's something that's a constant battle.  Everything combined, the pain, the fatigue, the depression, makes living life feel like a war zone.  Always trying to dodge a bullet.  

The medical community has come a long way concerning Fibro over the years, but we still have a long, long way to go.  I'd love to see a case study done, that follows people with fibro over a 20 year span.  If it was done with a big enough sample, I'm sure doctors would come to the conclusion that Fibro is a progressive illness.

There are researchers out there who would love to do more research on Fibromyalgia, but they just don't have the money to do so.  The NIH's categorical spending says that in 2015 $10M was allocated to Fibromyalgia research.  In 2016 it's supposed to be $11M.  In retrospect, screening and brief intervention for substance abuse received $30M in 2015 and will receive $31M in 2016.  Call me what you will, but it makes me sick that $20M MORE is being spent on something that is someone's own fault, than to try and find a cure for something that none of us asked for.  You can see the breakdown chart by clicking HERE.  Someone who's addicted to drugs or alcohol made the personal choice to pick up that needle or that bottle of alcohol the very first time they did it and every time thereafter.  Not one time in my life did I make a choice to be burdened with an illness that is slowly destroying my entire life and ripping away any quality of life.

In my opinion, we all need to shout and cry until we don't have a voice left, for more research of Fibromyalgia.  For more funding for Fibromyalgia research.  The old saying "You get what you get and you don't pitch a fit" does not apply.  I refuse to sit quietly back and just accept this illness as fate.  If those of us who doesn't personally suffer with Fibro won't try to do anything about it, then how can we expect anyone else to?  We can't.  It's up to us, my fellow fibromites.  We need to band together and make things happen.

A New Approach To Treating Fibromyalgia

Most everyone with fibromyalgia has a common desire that's always burning in the back of their mind.  Everyone is always hoping for a cure, or at the very least, a universal treatment method that actually works!  Dr. Michael Arata is on track to making that a reality!  He's pioneered a new approach to treating fibro.  

I first read about the approach of treating fibromyalgia by using TVAM (Transvascular Autonomic Modulation) in an article on the Synergy Health blog.  You can find that article by clicking HERE.  The article talked about how closely the symptoms of fibro mimic those of autonomic dysfunction,which is a malfunctioning of the nervous system.  Dr. Arata now believes that many of those who have fibromyalgia, also have small fiber neuropathy.  Reading this article left me intrigued, and I was craving more information.  I contacted Dr. Arata, and he was generous enough to answer a few questions I had and allow me to post them here for all of you.   Below you'll find our questions and answers:

TFF: Do you have any theories on what causes Fibromyalgia?

Dr. Arata: "At least for a portion of patients it appears to be an inflammatory autonomic neuropathy. As to what sets that off it is helpful to step back and think in general terms. Most chronic illness, particularly inflammatory ones, can be traced back to antecedents and triggers. Antecedents include things like genetics and exposures. Triggers are stressful events that occur just before disease onset. These can be emotional, trauma, infection etc. Intestinal permeability and SIBO are likely culprits for what sets off Fibro."

TFF: What led to the conclusion that many with Fibro also have SFN?

Dr. Arata: "I am not sure what lead the researchers to study the nerve fibers. It likely was similar to my experience working with MS patients. The overwhelming number of patients with autonomic symptoms was to hard to ignore. I didn’t have a neurology background which helped. I think in many cases it contributes to an elephant in the room phenomenon as the autonomic piece is often neglected."

TFF: How is the TVAM procedure performed?

Dr. Arata: "It is an endovascular procedure. That means “within the vessel”. In this case it is inside the central veins. A balloon is inflated to stimulate the nerves associated with the vein."

TFF: Are there any risks or possible side-effects to the TVAM procedure?

Dr. Arata: "I have submitted a manuscript looking at the safety of the technique. In 145 patients there were no procedural complications. At 30 days two skin infection developed and one blood clot occurred."

TFF: Will TVAM also help the muscle pain and joint stiffness that a Fibro sufferer deals with?

Dr. Arata: "Improved autonomic tone can decrease the intensity of pain felt. Stiffness also may improve. Treatment is not just limited to the TVAM procedure. For example magnesium helps some patients with those symptoms. Targeted use of supplements play a big role in my practice."

TFF: How long have you been performing the TVAM procedure?

Dr. Arata: "I have treated approximately 200 patients with TVAM over the last year."

TFF: How many Fibro patients have you done this procedure on, and what is your success rate thus far?

Dr. Arata: "All treated patients have autonomic dysfunction. Associated conditions are quite diverse. There have been about a dozen with Fibro. Response is seen in most but can vary in intensity. The patient with Fibro last week responded quite well."

TFF: Do the affects of the procedure last a lifetime, or is it something that needs to be done every so often?

Dr. Arata: "With such a new procedure it is very difficult to say much about durability. Treatment improved fatigue and cognition best. These two symptoms make lifestyle changes very difficult. I firmly believe the best treatment for any chronic disease is lifestyle. You have to be able to transform yourself and thats a tall order when you are seriously fatigued."

TFF: I had read that you are the only doctor currently performing the TVAM procedure. Are there any plans to educate other physicians on the procedure, to where this becomes a widely offered treatment?

Dr. Arata: "I will be speaking to physicians in Sicily in March. There is a group of Italian physicians who have been involved with CCSVI and similarly were troubled by the theory. They also concluded that the treatment response had to be something other than relief of vessel obstruction. I am very excited to share ideas with them."

TFF: Approximately how much is the procedure? Are insurance companies covering the cost, or is it all out of pocket?

Dr. Arata: "Most insurance companies are covering treatment so in many cases the out of pocket expense is very little. It really depends upon an individuals plan."

TFF: If someone travels out of state to come to you for the procedure, how long would they need to plan to be there?

Dr. Arata: "Consultation, treatment and follow up occur over three days. A day of travel on each end may be required depending on local."

TFF: If you have any research data supporting your work and would be willing to link it, I'd be happy to include that.

Dr. Arata: "I have one publication in print so far. Several others are currently under editorial review. This article describes the treatment effect on blood pressure. BP serves as a marker of sympathetic tone. It was the first objective evidence of treatment response. Click HERE to see the publication in print.

 Dr. Arata is the primary care physician and co-founder of Synergy Health, a medical center located in Newport Beach, CA. Dr. Arata has been at the forefront of research efforts focused on establishing the link between neurodegenerative disease and autonomic dysfunction. I'd like to thank Dr. Arata again, for taking time out of his busy schedule to chat with me.

Sometimes

I try to stay upbeat & positive.  I try to always have hope.  Sometimes though, I just can't.  Sometimes, I think why bother?  Sometimes, I feel overwhelmed and like everything is just too much.  I feel that I don't have any quality to my life any more.  If I can't work.... if I can't go out and do things, and have friends to do them with.... if I have to struggle week to week....if I have to live every day so tired and exhausted that I sit & cry.... if I have to live every single day in pain.... then what's the point of life become?  I'm in too much pain to even keep my house as clean as I'd like it to be, so how could I work?  Without working, I'm poor and can't afford to go out and do things I enjoy.  Being in pain and being poor has isolated me into my house most of the time, so I don't really have many friends left.  

I sit at home alone.  I have conversations with myself, inside my head, because there isn't any one else to talk to.  I try to maintain the facebook page for this blog, but I'm not really sure how many people even read it (or the blog for that matter).  Of the ones who do, how many really give a care what I have to say?  I try to remain hopeful, that by writing this blog and having the facebook page, that I may reach people and help to educate on this illness.  I try to remain hopeful that someday soon there may be a research breakthrough and my miracle cure will be right around the corner.  Is that really hope, or is it living in a fantasy world?

As a younger adult, I've worked 3 part-time jobs while carrying 18 credit hours in college.  All while raising four kids at the same time.  Part of it as a single mom.  I went out and did things with my kids, and with my friends. I always had the money to go do things.  I've never liked being alone.  I don't know if that stems from being an only child or what, but I've always loved to be in the middle of large crowds of people.  I've always been of the mind-set "the more the merrier".  Now, I'm alone.

I did a sink of dishes earlier, and I made supper.  Nothing fancy.  Just a quick, simple, supper.  That was a couple hours ago.  Now, I'm still sitting here in such pain that it takes my breath when a spasm hits.  Hurts constantly, but the spasms are the worst.  Sometimes, I'm not brave enough to keep up the fake smile and the fake "It'll all end up ok" bs.  Because sometimes, I really just need to cry and try to figure out what the point of my life is, when I have to live it within the constraints of pain and poverty caused by pain.  Sometimes, I really just have to wonder what the point of my life really is.  All the time?  I wonder why this illness even exists.

Another Fibro Co-Conditon? ..Imagine That!

I shouldn't have been surprised.  I really shouldn't have.  It seems that every time I turn around, I find another disease that's linked to having Fibromyalgia.  After blood work in February, I was told that I was pre-diabetic.  To be honest, I didn't really think too much about it.  I kind of just shrugged and went on about my business.  I did cut down on sugar.  I started dieting April 25th.  I've dropped roughly 20 pounds in the past five weeks.  

I had blood work done again a couple of weeks ago.  I've now moved into the diabetic category.  My numbers aren't horrible, but they are over the threshold to where they're calling me diabetic.  To be honest, the number didn't really phase me.  The fact that it put me into the diabetic category didn't really phase me either.  For some reason, it didn't really sink in until I had my meeting with the dietitian a couple of days ago. When she told me my doctor office had called and wanted me to take a diabetes education class, and gave me a testing meter, and made me check my sugar in front of her, ....then gave me a couple 5-day menu samples, ....it all sunk in and started bothering me a bit.  

What does a type-A neurotic do when they find that they have a new disease and it's eating away at them?  They come home and play Dr. Google, of course.  They search, and research, and research some more until their brain goes into sensory overload.  Then, all it takes is a 17 year old child to pose the question "Mom?  So many other things are connected to fibromyalgia, is diabetes a co-condition of fibro too?" to kick off a new Google search researching if there's a correlation between fibromyalgia and type II diabetes.   

Again, I should not have been surprised when my research proved that there is a correlation to diabetes and fibromyalgia.  In fact, "diabetes and fibromyalgia occur together nearly four times more often then would be expected." (Fibromyalgia Pedia, 2011-2012)  A study in the journal Rheumatology International, in 2003, showed that fibromyalgia occurs in 15%-18% of patients with diabetes.  

I researched a little further, and found that the higher the blood sugar level, the more severe a person's fibromyalgia symptoms are.  Diabetes.UK.Co. has a section on Fibromyalgia, and says that they are linked conditions.  The conclusion of a study published by the NIH states: " Fibromyalgia is a common finding in patients with types 1 and 2 diabetes, and its prevalence could be related to control of the disease. As with other diabetes complications, FM might be prevented by improved control of blood glucose levels."  You can read this study HERE.

As you can imagine, I'm not excited about making all of the dietary changes involved in a diabetes diagnosis. I'm not excited about the other health risks and worries associated with having diabetes.  Just as I wasn't (and still am not) excited about everything that goes along with having fibromyalgia.  In general, I feel pretty pissed off about it all.  I'm a 42 year old woman, who should be around half her life span.  Yet I'm trapped in the body of a 70 or 80 year old.  How many new diagnoses will I have by the time I'm 50??  What kind of condition will my body be in by the time I'm 50?  I won't lie, thinking about this causes me great pain and anguish mentally.  I'm an only child with aged ailing parents, and I'm single.  I have four children, but they're grown now.  My youngest has her high school graduation ceremony tomorrow.  They're all moving on with their own lives.  I'm essentially on my own now, and will be for the rest of my life.  With all of these health issues, that scares me for many different reasons.  

Hope.  Oh how I hope for a cure to be found for fibromyalgia.  The thing is, the more reading I do, ...the more research I do, ....the more I look into grant and private sector research donation numbers, the more hope slowly slips away.  There just isn't enough money, for enough real research to happen, for a cure to be found soon.  That's why educating people about this illness is so very important.  If people doesn't understand what all it really entails ...and boy does it entail a lot, then people won't be motivated to demand the funds so desperately needed for research.  Of course, I shouldn't say that there won't be a cure found soon, because even with the menial research being done "anything's possible", as the saying says.  That's where hope comes into play again.

Random Acts Of Kindness Challenge

I'm sure that everyone has heard of random acts of kindness, good karma, etc.  Well, I'm going to ask you all for two random acts of kindness.  First, let me tell you what has prompted this chain of thought.

I'm always passionate about wanting to educate and advocate.  I want more then anything for a cure to be found.  Heck, I'm not greedy, I'd even be thrilled if a new treatment plan was found that would help everyone universally.  Unfortunately though, I really don't feel as if that will ever happen any time soon. Not the way things sit right now, anyway.  

Why, you may ask?  I'll tell you why. Because there's still too much stigma out there concerning sufferers of chronic pain conditions.  There's too many myths and misconceptions. Too many people who think that either the pain and fatigue associated with Fibromyalgia, or CFS/ME, RA, Lupus, Osteo arthritis or ANY chronic pain condition for that  matter, is "all in our heads".  Or that we're attention seekers.  Or, that we're just lazy worthless people who doesn't want to do anything and contribute to society. My favorite reason of all though?  That we're drug addicts just looking for a way to get pills shoved at us.  Oh buddy, let me tell ya; I just love the fact that I feel like a walking pharmacy. I just love the fact that I have a few meds that I'm supposed to take three times a day, yet I'm lucky if I remember to take them three times a day - because that sounds like a true druggy right there, doesn't it?  I just love that while reading the possible side effects of taking a newly prescribed medicine, the information stated that long term use in mice, causes stomach cancer.  It went on to say though, that they had no idea if that would occur in humans or not. Boy, that sounds encouraging, right?  I kind of want to literally throw up each time I look at the foul little thing now.

Today and tonight were horrible in the pain department for me.  If I said the pain was bad, horrible, horrendous, debilitating, or any other adjective like that, it still wouldn't accurately describe the type of pain I've dealt with.  When I sit around in this much pain, even after taking meds, it tends to make me hate Fibromyalgia, DDD, IBS, and arthritis just a little bit more.  It makes me want to push and shove to demand more funding for further research. It makes me want to educate and advocate that much more.  The only hope we have, is if we can make others understand the importance of advocating for further research. To help them understand what a day in our lives, is truly like, so that they'll realize the importance of a cure or of a treatment plan that will actually work!  

This is where you all come in.  I've done the research.  I've mapped out all of the statistics.  I've put together a seminar that not only will give resources and interesting studies for those of us in attendance that suffer, but I also have material in there telling what a true day is like for us. It has material in there proving that this isn't in our heads, or that we're not seeking attention or faking because we're lazy or addicts.  Your packets share with you productive ways to help your family and friends to understand what this is really like for you.

Since I've been single for the past 9 months, and I haven't had a job in years due to my health, I can't foot the expense of getting this seminar out to the general public by myself.  I'm extending a challenge to you all, asking for two acts of random kindness from you.  One, is that if you can afford even a $5 donation to my seminar fund, that you'd highly consider making a donation.  $5 is the minimum amount that GoFundMe will accept.  The second act of random kindness that I'm asking you all to do, is to please share my mission, and link to either this post or directly to the GoFundMe page, throughout your social media sites.  If you have a blog, please extend this challenge to your readers.  If you have a facebook fan page, please link to this post on your page.  If you aren't a blogger or crafter with a facebook fan page, then I'd ask you to post it to your personal facebook page, extending this challenge to them and for them to extend it to their own friends and family as well. If you have a Google+ account and/or a Pinterest account, that you share this on those forms of social media.  If you have a Twitter account, please tweet this post and ask for RT's on it. 

At the age of 42, I know I'm not a spring chicken.  I'm also not an old duck yet either though.  The thought, that I may have to live another 30, 40, 50 ...years trapped inside my own personal prison is a horrifying thought to me.  

To feel exactly like you have the flu every single of your life, all the way down to nausea and skin that's sore to the touch.  Skin that hurts if it's even lightly brushed by someone else.  Or just like mine is tonight, that hurts when my shirt shifts over it while I'm typing this. To having sharp pains.  Stabbing pains.  Dull, deep pain.  Sunburn feeling pain.  Sore muscles, and joints that hurt.  Headaches.  Muscle spasms. The lack of energy.  The dozens of co-conditions that run with FMS.  It's just all. too. much. It's no wonder that depression is a co-condition of fibro.  Who wouldn't be depressed having to life every single day of your life like this?

Thank you all for taking the time to read this.  Thank you to those who will accept my challenge of the two random acts of kindness and passes the challenge on to others as well!

cureLauncher

cureLauncher is a pretty neat idea.  What this site does, is create opportunities for researchers and health care workers to list the projects they're working on, so that private sectors can donate funds to help their research along.  It also lets them list their clinical trials, for every day people like you and I, to benefit from this research.

No matter how big, or how small of a donation that you can make, each and every donation will add up to help find cures for terminal illnesses.  I was blessed to help participate in a private research endeavor through my Rheumatologist back this past July.  Thanks to the private funds that were donated, a researcher at The Cleveland Clinic was able to conduct a small study looking for a certain marker in the blood of people with Fibromyalgia. I will do anything that I possibly can, to try and propel forward research on Fibro and other Chronic Pain/Fatigue illnesses. As all of us Fibromites or chronic pain sufferers know, research is key to finding a key for any life threatening or debilitating illness that's out there.  That's why I was so excited to learn about cureLauncher!

When I was asked to write a review for cureLauncher, I jumped on the chance.  Anyone who has been a part of my blog or facebook page knows that my motto is "Educate and Advocate" for understanding so that it will lead to further research, to hopefully enable a cure to be found at some point so cureLauncher is right up my alley, so to speak!  

cureLauncher is very worthy of a few minutes of your time.  Check it out, read about recent clinical trials, take a look at the current project, and even speak with a live agent while you're there!  Even with a small donation, you'll be able to feel proud that you had a hand in ground breaking research, that may save hundreds of thousands of lives over the years!  Click any words, cureLauncher, to see what all this great site has to entail!

My Dream For 2013

I'm really excited to turn my dreams into reality in 2013! A new career of helping to educate and to advocate for those with chronic pain & fatigue illnesses. I can't do this though without your help. I can't even get my page into the GoFundMe search results until the fund has received at least $100 in donations. I'd be very grateful if you all would help me to help others. Let's make 2013 the year of awareness and change in thought process for the approximate 116 MILLION people that suffer day in and day out with some sort of chronic pain illness. Pain that debilitates and takes away from a person's quality of life! If you don't suffer from a chronic pain illness, if you'd have to live ONE WEEK like we do, you'd understand WHY this is such an important feat.

I, along with approximately 115 other U.S. citizens would be extremely grateful for any help you can give us.  I also need a career, and where education and advocacy is so important to me, getting the seminars off the ground would be a dream come true for me.  The more people who know, and start to understand what people with chronic pain go through day-to-day, the better the chance we'll have at demanding further research.

I'm going to be completely honest here.  I do NOT have any quality of life the way things are.  I try so hard to hold onto my ADL's (Activities of Daily Living).  As much as I don't want to admit it, they're slowly slipping away from me.  I'm only 42 folks, and there are people who suffer like I do that's a part of The Fibro Frog, that are in their early 20's.  Research has made some great advances in the field of Fibromyalgia.  They now have proof that it's VERY real.  It's been proven that Fibromyalgia is a neuro-immune disorder.  Our nerve endings are significantly  effected.  Tests and various studies have proven that we really are having significant pain.  Brain imaging studies have also proven that the reason we're so tired all the time - wake up as tired as when we go to bed - is because we never go into the deep sleep cycle.  We don't get into REM, so we're never getting that restorative sleep that the body so desperately needs.  The old thought process of "There's nothing wrong with these people, they're just crazy and lazy" is now gone since research has proven so much.  Unfortunately, this is still the biggest myth out there surrounding people with a chronic pain condition such as Fibromyalgia.  We need funding for MORE research, so that we can advance on to find out what causes people to get Fibromyalgia.  We need funding for MORE research so we can find a CURE for Fibromylagia.  Most of us would even be completely stoked if they'd even just find a concrete universal treatment plan that would WORK for EVERYONE who's effected.  Right now we don't have that.  We have one pill for one symptom.  One pill for another symptom.  Sometimes a pill will work, then for others it won't work.  Right now, for lack of a better word, the doctors play russian roulette with us.  

Not only do I need a career that I can actually work, since there's no way in heck I could work a typical job, but I need to get the message out.  The message that "we" aren't crazy.   "We" aren't lazy.  My seminar not only hands a ton of information and resources to the person effected, but it also reaches out and shows the people who are NOT effected, how real and debilitating living with a chronic pain condition is.  It opens peoples eyes as to how much more research is needed.  If people doesn't understand the "truth's" of chronic pain, then there never will be pressure put on the government and private proprietors to give more money for more research.  Research that's needed more then I could ever convey.  I'm reaching out to everyone, to ask that you part with a couple bucks donation so I can get this dream off the ground.  If you're able to donate $5 or more, then you can donate via my GoFundMe account by clicking HERE.  GoFundMe has a minimum donation amount of $5.  If you aren't in the position to donate at least $5 but want to contribute, you can donate $1 or more via my PayPal account: jaammull(at)aol(dot)com.  

No matter what, I want to thank all of you for at least reading this and following along with my progress.  I'm blessed that I've gained so many followers in such a short time period.  Less then 1yr, and that amazes me.  I'm thankful and greatful for each and every one of you to have come into my life.  I hope you all have a Blessed holiday season.  Merry Christmas to you all!

EVERY Day Should Be An Awareness Day

As I sit here with a wet, gooey feeling on my mid-back from my pain patch, I started thinking about my personal facebook profile picture.  It's one of the "May 12 Fibromyalgia Awareness" photos that go around. Maybe I'm just grumpy tonight from being so tired (I couldn't fall asleep Friday night until after 7am Saturday morning).  Maybe it's because my arms, neck, and shoulders are aching just with minor typing tonight.  Probably  Possibly all of the above, but regardless it struck a nerve gave me pause for thought.  We're supposed to create enough awareness yeah, because that's a real possibility to do any good or bring about changes by making people "aware" one day out of the year?

I'm sorry, but it kind of makes me want to scream and cry, and kick, and throw myself on the ground in true temper tantrum fashion when I sit and really think about that tonight.  Before starting this post, even though I knew the answer, I still went to page after page googling "what is" ....Fibromyalgia, Lupus, RA, Ankylosing Spondylitis, Osteo Arthritis, CFS/ME, etc.  Why would I do this besides being completely crazy?  Just to look at what I already know.  "Although there is no cure at this time ....."

No cure "at this time".  Does that mean that there will be a cure in the future?  Will it be during my lifetime?  Well, I'll tell you my honest opinion.  Although I'm hopeful, realistically I really don't think there will be a cure in my lifetime.  I'm praying that a cure will be found during my daughter's lifetime.  The reason I'm not hopeful, is because there isn't enough advocacy.  There isn't enough awareness.  If you've been around my blog for awhile, you know that one of my key phrases is "without education there won't be change".

What do I mean by change?  You could say that I mean it in the same way as awareness.  My entire mission statement for The Fibro Frog could be summed up by the words on one of the awareness photos I made up.  You'll see it below:

I just think it's so silly to expect people, as in a lot of people, to become aware of how painful, debilitating, and real these conditions are by having separate one day awareness dates throughout the year.  According to the U.S. Census Bureau, as of July 2011, there's 311, 591,917 people in the United States.  Out of over 3 hundred MILLION people approximately 6 million people have Fibromyalgia, and all of the chronic pain illnesses together tally around 116 million people, that still leaves 195,591,917 people who doesn't have a clue what it really feels like to live with an illness that causes chronic pain.  You'll find the census bureau information that I used for this post, by clicking HERE.  That still leaves one heck of a lot of people that doesn't have any clue in the world how miserable our lives truly are have any idea how hard our day to day lives really are.

195,591,917 people that by no fault of their own, just can't grasp the type of pain we live with.  195,591,917 people that are still left to believe that the pain is "all in our heads", or that "Gee, my back, feet, and legs hurt after work so I do know what these people are going through and it isn't that bad.  They're obviously attention seekers".  We can't be mad at people for thinking these things.  As angry as I start to feel every time I read or hear of someone saying that Fibromyalgia isn't real, I have to calm myself down because it isn't there fault.  They truly have no idea of the scope of pain and fatigue that we endure every single day of our lives.  That's my fault.  Our fault.  

Some of you are probably starting to get completely a little miffed at me right now for putting the blame on us, aren't you.  Seriously though, unless we can make these people understand, they will never know what a day in our lives is truly like.  How do we do that?  By educating them.  By talking to them. By showing them proof from studies that these illnesses are real.  By giving them analogies of things that they can relate to.  For instance, using the analogy of when they've had the flu.  That really is one of the truest analogies out there.  

How can you start educating people?  Simply post the truth about how you feel on your face book page.  By writing and sending a bulk email with info, examples, study and research links in it.  By spreading the message about my "Living With Chronic Pain - A Patient's View" seminar.  By talking to your community leaders, pastors, lawmakers, doctors, clinics, college campuses about booking my seminar.  If people doesn't understand what it's truly like to live like this, then it's up to us to help them to understand.  If we ever hope to have a cure found (for whatever chronic pain/fatigue illness you may have), it's going to take pressure from multiple people to demand further research.  I go over the statistics of how much government money goes towards research for us, compared to the amount of government money that goes towards research other illnesses.  Now, I'm not being crass or cold hearted.  I've had people I love dearly that's passed away due to some of these other illnesses, but the distortion in the amount of research funds for these other illnesses, compared to what we get for fibromyalgia, was staggering to me.  I had someone say to me once "Well at least you won't die from what you have, like a person with cancer might".  Again, I'm not crass or cold hearted, I'm just throwing my honest opinion out there.  I'd much rather be diagnosed with some sort of heart condition, because they have treatments that can be tried ...medicine, surgeries, etc. that can possibly lead to the person being cured.  I've long and hard with this next one, and I still feel the same way; I'd rather be diagnosed with cancer.  Again, there's treatments and therapies and surgeries that can be tried an a lot of the time the person is cured.  Yes, a person goes through pain, tremendous pain, and sickness with cancer treatment. Still though, they have the hope that they'll achieve remission and be cured someday.  Did you know that in most of the auto-immune illnesses, a lot of people take some of the very same immune suppressants that is given to people with cancer?  It's true.  Yet even though they take meds and have infusions of the same meds cancer patients have, they don't have any hope that they'll be cured.  They live with the knowledge that they're going to live in perpetual pain every single day of their lives until they die.  Not only the pain, but the fatigue, the headaches, the nausea and sickness and depression that are co-morbidities of  Fibro, or Lupus, or RA, etc.  Co-morbidities such as ulcerative colitis, IBS, chrones disease, migraines, and on and on and on.  Real conditions that hurt.  Real conditions that make you sick.  Again, for me, I'd much rather have a diagnosis of something that could be fatal because not only is there hope of being cured, but regardless, I'd know one way or another that my pain would come to an end.  On days where my pain is incredibly bad and I've been stuck in a flare for days or weeks, I sit and think about it and I'd rather know I was going to die, then to know that I have somewhere around 40 more years to live in pain, sickness, and agony.  It feels as if I've been sentenced to a life of living in a slow, perpetual hell. 

The only hope I have; the only hope we have, is that we bring about awareness to enough people that understands what a crap sandwich we've been dealt in our lives.  Enough people that's willing to help us advocate and put pressure on lawmakers and congressmen to push for more funding for more research. I really hope that none of my opinions in this post have offended anyone as that wasn't my intent.  The statements and opinions that I've expressed are solely mine.  Because I feel this way, doesn't mean that someone else with the same condition as I have, feels this way too.  As my last blog post talked about though, the number one cause of death for people with fibromyalgia, is suicide.  It's just so daunting knowing that you don't even have a chance to be healthy again.  Knowing that you'll spend every day of the rest of your life sick, hurting, and depressed. I've always been honest with all of you on this blog, and I always will be. Some people may find that honesty offensive, and I realize this, but that's who I am. If I give people nothing else, I at least give them my honest thoughts and opinions.  All of this to say please, please don't just try to bring awareness about on May 12th of every year.  Advocate for awareness every day of every year.