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".  

At Least It's Just Fibromyalgia

This post probably isn't going to gain me any popularity, but that's ok.  Those of you who know me, know that this blog has never been about popularity.  It's about speaking my mind concerning Fibromyalgia and other chronic pain and fatigue illnesses, no matter the outcome.

The friend of a friend said to me recently that she heard I have some health issues.  I replied yes, that among a lot of other things I have Fibromyalgia.  She was silent for a minute and then she said "At least it's just Fibromyalgia.  It isn't like it's something that could kill you like cancer or something."  Without missing a beat I looked her directly in the eye and replied with "I'd rather have cancer."

Eyes wide and mouth gaping open she was stunned into silence for a few minutes.  When she regained her composure she asked if I was serious.  I told her that I was completely serious.  I explained to her that Fibromyalgia is a strange illness, in that it effects people in different ways.  It has varying degrees of implications on different people.  Some people have it enough to notice it and have it be annoying, while others are completely bed-ridden from it.  I've even known of a lady who in a flare couldn't stand up and walk, and had to crawl on her hands and knees to the restroom.

Don't get me wrong, cancer is a horrible monster that causes pain, agony, and destroys lives and families.  I wouldn't wish it on anyone. So does Fibromyalgia though.  With cancer, the pain and agony is going to end.  No if and's or but's about it.  The pain and sickness will come to an end.  Either a person is cured or else they die.  With Fibro, there isn't any end in sight.  It's an entire life stuck in an earthly hell of pain, fatigue, co-morbidities, and sickness. 

In my thought process, I'd rather have the chance of a cure and at least knowing if it doesn't work that my pain will end anyway.  Yes, I'm thankful to be alive but thinking about having to live for 40 or 50 more years trapped in this hell is daunting and to be completly honest, I'd rather not.  No, I'm not suicidal in the least, I just would rather not have to live this way knowing it could be decades upon decades.  

I'm a big quality vs quantity type of person.  If I can't have a good quality of life, than I'd rather not have it span out for decades.  The diminished quality of life that I lead, has much to be desired.  It has tore apart my family.  It's isolated me from friends and family.  It's left me depressed.  The level of pain that I feel with a flare of IBS; a co-morbidity of Fibro, is incomprehensible at times.  My latest episode a few weeks ago left me screaming and my daughter ran into the bathroom just in time to see me pass out from the pain and fall from the toilet to the bathroom floor.  -And I've had four children without any type of pain relief.  I'm not just some whimp!

A couple of nights ago, I sat at my desk with tears running down my face from the pain I was experiencing in my neck and shoulders.  I finally realized that I was sitting with my shoulders pulled up as far and tight as I could.  Although that was my bodies natural reaction to the pain I was experiencing, I knew that it was only making things worse.  It took every ounce of concentration I could muster, to keep relaxing those muscles and allowing my shoulders to go back down to a natural position.

My daughter kept begging for me to make a box of brownies.  Last night as tired and fatigued as I was, I decided to make them for her out of the guilt I was feeling.  I had to stop stirring the batter several times due to the pain and cramp in my hand.  Twice while trying to stir the batter I had to stop and grab the bar on the stove, and slowly bend over stretching my back due to the pain I was experiencing from standing for those few minutes.  

My symptoms are so severe and I have so many co-morbidities that I'm deemed disabled and I'm unable to work.  That further restricts my contact with other adults and the outside world.  It leaves me poor, as I live on less than $750 a month.  That means that not only can I never vacation - oh how I dream of a week long vacation on a beach somewhere lounging around in the sun, splashing in the water, and sitting in a hotel hot tub.  Eating out and not having to cook or do dishes - but I struggle to put clothes on my back and food in my house.  Eating out is a rare luxury.  I've decided to try to see a movie at the $3 afternoon rate once a month, so that I can have something to look forward to and to do.  Of course, it'll all depend on how I'm feeling that day.

Every single day, I have 12 or 13 meds that I have to take.  A couple are once a day, but most are two to three times a day.  I hate taking meds with a passion.  Even as a teenager I'd suffer through pain instead of taking a Tylenol.  

At times, I'm left feeling stupid or embarrassed due to Fibro Fog.  For those that don't know, Fibro Fog is the name given to the cognitive delays one can experience with Fibromyalgia.  I'll be in the middle of speaking (or writing) and forget what I was even talking about, let alone what I was going to say.  I'll walk into a room and forget why I went into the room.  Shortly after starting this post, I went into the kitchen to make a cup of coffee.  I opened a bottle of water to dump into my Keurig, and found myself instead pouring it into my coffee cup.  It made me mad and disgusted with myself.

Insomnia (leading to sleep deprivation), another wonderful co-morbidity of Fibro.  It literally rules my life.  I've been awake for 36-48 hours at a time.  I've been so tired that I've literally cried.  Not getting the proper rest leads to more pain and depression.

Not every person with Fibromyalgia experiences it as severly as I do, so please don't read this and think this is definitely going to be your life.  On the other hand, some people with Fibro experiences symptoms more extreme as I do.  Such as the lady who had to crawl to the bathroom.  There's just no way to guage how it's going to effect a person.

All of this combined plus more that I didn't even delve into, leaves me saying yes, I honestly would rather have cancer than fibro.  Given the choice, I'd choose neither.  I'd choose to be illness-free.  I'd choose to be healthy and happy and a productive member of society.  That isn't the road that God chose for me though, so I'll awake every day.  I'll go through each and every day with as much optimisim as is possible.  I'll make the best of each day as is possible, and do the best I can.  I hope this post doesn't offend anyone and if it does I'm sorry ...but I won't apologize.  These feelings are mine.  They're real, and I own them.

Am I As Invisible As I Feel?

I know that many who will read this post, know me well.  Those of you who are new to this blog, may start reading this, and ask yourself "What is this lady doing? If she's an advocate for chronic pain and research, then why isn't she being all super happy and over the wall professional?".  I'll answer that for you right now, so you don't have to pause and ask yourself this question a paragraph or two into things.  Yes, I'm a chronic pain advocate. Yes, I will do anything and everything within my power to advocate for further research to find a cure for chronic pain conditions such as Fibromyalgia, Lupus, RA, CFS/ME, CRPS, Osteoarthritis, ...and the list could go on forever and ever unfortunately.  What I am not, is a doctor.  Or a scientist.  Or any type of medical professional.  I've never had a college writing class other then English composition I & II.  I've never had a public speaking course.  In fact, I don't have any fancy initials of any type behind my name at all, except for those I've jokingly donned as CPS (Chronic Pain Sufferer).  

In this blog, I "talk" about real problems.  Real feelings, that sufferers of chronic pain conditions feel.  If everyone out there that suffers from Fibro, or Lupus, or what-have-you, is all happy and positive in all of their posts, then they aren't being honest.  If they aren't going to be real about the facts, feelings, and challenges we face, then why write or try to advocate at all?  Because in my own personal experience, as a person, not as an advocate, people are not going to be able to really grasp the true concept of this illness if you don't tell them what the true concept of this illness is.  If they don't suffer it, they don't know it.  It's that simple.  If someone reading this can't connect with me, and really understand what I'm going through, then how can I expect them to help?  If this illness (any of these illnesses) aren't bad enough that you're still all happy and strong every day, then why should they bother wanting to contribute funds to further research?  After all, our life must not be so bad if we can remain so strong.  That said, you won't get any "sugar coating" of my life or of this illness on this blog.  What I put, is how I feel.  What this illness has done to me.  How it's made me feel.  

So how am I feeling?  I'm feeling really sad.  Not just Fibro, but almost all chronic pain conditions run the co-morbidity of depression.  If you hurt every single day of your life, and you've had to give up things and people you love because of your health, you'd probably be depressed too.  No joke.  I'm not embarrassed, nor am I ashamed, to admit that I suffer, horribly, with depression. I can't begin to tell you the amount of tears I've shed off and on all night tonight.  Right this very minute even.  I've gotten so good at crying, that I do so silently now.  The tears slide down my face, and no one would be any wiser if they weren't looking at me.  Sometimes, like tonight, I often wonder if I'm invisible.  If my tears are invisible.  

I feel as if I'm stuck all alone, confined to my dining room because God knows the pain I'd be in if I tried to sit comfortably in my living room.  This computer, it's my gateway to the outside world.  The real world, where people go places, and do things, and have friends, and date, and enjoy life.  Where I can look, and read, and see that people still go places.  They still have friends.  They still have fun.  If I didn't pop online and make a status on facebook, or post on this blog, then I'm not sure that anyone would even know that I exist anymore.  This illness, it's taken so much from me.  I sure didn't let it.  I didn't want to give up a happy, fun, carefree life.  I didn't voluntarily hand it over.  Heck, two years ago I would've laughed if someone had told me this would be my life now.  This.  I don't even know what else to call it.  

This crap with my body, ...the fibro, ...the still unnamed autoimmune disease that's putting calcium deposits in my lungs, and on my bones.  It's created the most lonely, miserable, low self-esteem life that I could ever dream of.  I'd love to blame it for stealing my marriage.  I have blamed it for stealing my marriage before.  Right here on this blog even.  I don't think so any more though.  He'd left me before, when I wasn't this sick. If he truly had loved me, this wouldn't matter.  No, in the past year he's been gone, I've come to realize that this was just his excuse.  His idea to blame, so that he didn't have to shoulder the burden of guilt himself.  His excuse that my health was just too "stressful" for him was just an easy out.

One time when he left me, we divorced.  We were divorced for a year, then decided to give it another try and remarried.  In retrospect?  A horrible idea.  Still though, things were hard for me.  I had four children.  I went to community college for nursing during the early morning hours.  I went from there, to a 2nd shift factory job Monday-Friday.  On Friday night when I'd get off at the factory I'd go straight to work as a waitress and bartender until close.  I'd go to work at the same bar much earlier on Saturdays and worked until close.  On Sundays, I worked at a different bar that served a lot of food and worked a 12pm-5pm shift.  It was hard.  But I could do it.  I did do it.  I had plenty of money to support myself and my kids.  I was out among the living.  I had friends.  Friends from college.  Friends from work.  Friends from high school.  The kids and I went places and did things.  I was asked out on dates. I was pretty. I had a great attitude and was fun to be with. If I was alone, it was by choice.  

Oh how the years change and complicate things.  This time when he left, I hadn't worked in years.  It hurt my body too bad.  I didn't know what was wrong with me, but it hurt to work and my husband told me "Well, don't work then.  I make enough for us to get by".  I didn't work.  I sat home, taking care of the house and the kids.  I engrossed myself into their school activities, and their friends.  I had supper ready for my husband damn near every night by the time he walked in the door from work.  I filled my life and my heart with being a wife and a mother.  By the time he left this time, there's no way I could work.  No way.  It puts me literally in tears to stand long enough to fry an egg.  I don't have any "outside" friends, because my husband and my kids were my life.  I concentrated for years on nothing except for them.  I truly believed my husband was my best friend.  I'm not pretty any more.  My dad's side of the family is blessed with the fat gene curse.  Before I was sick, I kept my weight off.  I had to work my ass off to stay nice and curvy with a flat tummy and legs of steel, but I did it.  Now, I can't exercise like that. Some days I honestly have to have my youngest child, the only one who still lives at home, come into my room and help pull me to a sitting position in the morning because my lower back hurts too badly that I can't sit up on my own. When you're in that kind of pain, exercise is not an option. I'm fat.  I'm more then fat, I'm obese.  If anyone tries to say that doesn't carry a stigma with society, they're out and out lying!  

How am I ever supposed to meet new people?  How can I make friends?  I can't go get a job, and meet people in the work place.  Heck, I wouldn't even begin to even know a shift I could work because sometimes with my insomnia I'm not able to go to sleep until 8am.  Sometimes it's noon the next day.  Other times, last night for example, I actually was able to fall asleep around 12:30am, but then I was awake again by 5:30am.  By 1pm today I couldn't stand it and fell asleep for 2.5 hours.  What job would be able to accommodate me?  Even though I believe in God, and I pray, I can't even commit to going to church because I never know if I'd be awake or not. Even for evening sessions.  Or if the pain will be too bad to go. How am I supposed to meet people to make new friends?  As for dating?  Huh.  Yeah.  I couldn't buy a date to McDonald's.  They'd take my money and throw me out of the car before we got there.  Seriously though, what man, what good man would want a 42 year old woman who's fat, sick, and can't work to support herself?  Not much of a catch.  This illness, ...or these illnesses, have stripped from me every single shred of self confidence and self worth I've ever had.  

Still, I don't lose hope.  This hope, drives the fire in me.  It pushes me to tell my story.  It forces me to swallow my pride and not care what some may think of me for admitting my weaknesses and feelings. For admitting my physical and emotional pain.  This hope is what's motivating me to organize a walk/run in September to bring about awareness of chronic pain conditions and to raise funds for further research.  I have the hope of a cure to be found in my lifetime. I have the hope of a treatment plan that will actually work, to be found yet in my lifetime.  I don't have a clue how to organize this thing, but you can bet your ass that come September this thing will be happening, because I will never give up.  Never.  If I give up, then I'm letting go of hope.  I can't just sit back and depend on others to create enough awareness and research for a cure to be found.  I have to do my part in this.  A cure may not be found in my lifetime, but it sure as hell won't be from my lack of trying to do all I can.  

See, no matter how sick, or how sad or broken I may seem at times, I still have hopes and dreams.  I'm fighting tooth and nail right now, to try and ensure that my hopes and dreams come true someday.  I hope to live without debilitating pain every single day of my life.  I hope to be able to work again someday.  I hope to be able to exercise and get down to a healthy weight.  I hope that someday I can show the world that I'm still that same fun, funny, fly by the seat of her pants girl that wants to go on vacations.  Go out to eat and to movies and dancing on dates.  That I still have a huge heart where I like to put those in my life ahead of myself.  That my true joy stems from making others happy.  I have hope ...for a full, fun, life with a loving relationship in it at some point.  That is why I sit here behind my computer, and I post about how important it is to educate others, anyone who will listen, as to what it's really like living with a chronic pain condition.  That is why I open myself up on this blog.  It's my hope for a cure. For now, I'll sit here invisible to the world, hiding behind a computer screen.  I'll cry my silent tears, and I'll hope and dream for the day that I can run outside and jump up and down!  For the day I can take my life back from Fibro and autoimmune illness. The day that living a life with chronic pain is behind me and I can look to the future.