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".  

Hemiplegic Migraine, Multiple Sclerosis, and Life

 Hey there Fibro-Froggies!  I've had a long hiatus, but I'm back!  I'll be posting as I used to, trying to educate the general population about living life with Fibromyalgia and other chronic pain & fatigue issues. Advocating for more research to try to find a cure, or a solid universal treatment plan that works for EVERYONE, and to try and help others that live with chronic pain conditions navigate this thing called "life".  Over the last few years life has taken many twists and turns for me, with many peaks and valleys.  Living with chronic pain conditions, we all ride the roller coaster of life.  Sometimes we laugh and have fun, but more days than not, we just wish we could hop off this roller coaster that we're stuck on.

A few years ago, I started experiencing some new symptoms.  The first time it happened, it was around midnight. I was sitting at my computer talking through PM on FB with a friend. They worked 2nd shift and had just gotten off work and asked me if I wanted to meet them at a restaurant to grab a bite to eat.  I was trying to tell them that I would like to, but that I had already taken my night time sleep meds.  I typed it out and hit enter.  The response back was "Huh?" ...I thought "what the heck?!  How could they not understand what I just said?  I looked up to read what I had put, to see how I could possibly write it any clearer.  When I looked up to read it I was dazed!!  What was showing on the screen was something to the effect of "aooxxxazzzoiejk".  I said right out loud ...."WTF?!  THAT isn't what I typed out!" and I typed again, telling them I'd like to, but that I had already just taken my nighttime sleep  medicine.  I hit enter and looked at the screen.  Once again I just had a random string of letters that didn't spell anything.  To say I was scared at that point, was an understatement!  I immediately thought "Am I having a stroke?!".  My youngest daughter was living with me at the time and her bedroom was upstairs, as was my computer and craft room that I was in.  I jumped up and went to take a step to go to her to ask if I was having a stroke or not, and I was super off balance.  I couldn't really walk.  I yelled for her and she came running in.  When she came in she immediately said "What's wrong with your face?"  I told her "I don't know, what IS wrong with my face?"  Courtney told me that both of my eyes were drooping. She was able to make out what I was saying, but my speech was slurred and I've been told I wasn't making sense all of the time.  I got the point across of what had happened with me trying to type and she looked at it.  She helped me get downstairs and I made her take me into the bathroom where I had a mirror.  I looked to make sure that both of my eyes were drooping, and not just one. -Which would be an indication of a stroke.  I then stuck my tongue out in front of the mirror to see if it deviated to one side or another.  It did not.  Whew.  I was pretty sure at that point that it was NOT a storke!  -Thank Gawd for me having a medical background lol.  I still was scared shitless though.  By the time this all had been done, I was coming out of whatever had happened.  She helped me get from the bathroom to my bed and I laid down.  I'll tell ya though, I didn't sleep. I kept laying there thinking that I was going to die. I really, truly, thought I was on my way out lol.  

When the sun finally came up, I too was up.  I still was literally in tears, scared shitless about what had happened. I knew my parents were early risers and my mom had an aide that would be there at 8am, so I threw on clothes and off to my parents house I raced.  I walked in, and loudly announced "I think I MAY have had a stroke last night.  Although it was both of my eyes that were drooping not just one, and my tongue didn't deviate to one side or another.  So honestly it doesn't fit a stroke but it has to be something serious.  I think I may be dying"!!  I along with my moms aide both were on google on our phones, and I then told everyone, "yeah, see I don't fit the catagories that it was a stroke, but everything else sure seemed like it was".  As soon as my doctors office opened I called for an emergency appointment and they got me right in.  

First off, I love my doctor.  If she would ever up and leave the community, I would up & leave with her. I swear I'd make it happen haha.  She is one of the very FEW doctors that believe in Fibromyalgia and knows the significance of living with it.  Like she gets it sooooo much, that I'm sure either she has it herself, or someone in her family that she's very close to has it.  Anyway, when she walked into my room, she could tell how scared I was.  She told straight up "Ok, this definitely wasn't a stroke because it 100% wouldn't affect both of your eyes.  She told me if she had to guess, she would say I either had myasynthia gravis, or MS.  Ummm ....excuse me but myo-what??!  She ordered an MRI of my brain.  One with contrast and one without.  Guess what?  The scans came back completely NORMAL!  How?!  What the heck had happened to me?  She told me upon follow up, "Let's just hope it was a fluke and never happens again".  Ok.  Let's hope.  

Let's fast forward about 6 months.  All was still good and I was "normal".  You know, OUR normal.  The NORMAL that those of us with fibro and other chronic pain conditions have.  -No more weird face drooping.  No more weird random strings of letters when I try to type.  Then one night, it was late.  -Because you know, with fibro my insomnia is one of my biggest comorbidities.  It is just awful!  Anyway, the time had come that I had moved in with my parents to start helping take care of them medically and help them around the house.  I'm an only child, I have medical POA of them both, and unfortunately their health was (IS) declining.  Way more rapidly than I would like for sure.  So it just made sense that I move in with them, to make thins easier on all of us.  Well, they were having trouble sleeping that night too and they were up in the living room.  I got up to walk out there and tell them something.  It's been so long ago, that I don't even remember what I was trying to tell them. But anyway I walked out there said whatever it was I had wanted to say and my dad looked at me and said "What?"...I said "what do you mean what?  I said .....x.xxxx".  I again was met with "Amy, I can't understand you.  You're not making any sense".  At this point I was starting to get mad.  I said it all again, very loudly thinking that where they're getting hard of hearing they just couldn't hear me.  My dad again very loudly told me "I don't know what you're saying.  Are you drunk or on drugs or what?" ...what in the HELL did he mean?  I could hear myself talking. I could hear the words plain as day.  What was wrong with my dad that HE couldn't understand me?  I went to take a step and I lost my balance and stumbled into their grandfather clock.  I couldn't understand what was going on.  He just kept telling me that I must be a closet alcoholic or on drugs or something and if I needed help, I should get help.  He said that he could tell by my face, that I was on something because my eyes looked so funny. OH MY GAWD was I infuriated lol.  My mom said to let her help me get to bed, so I did.  I woke up the next morning and I was still pissed off lol. Like seriously pissed off.  When I walked out to the living room my dad brought it up again and I just kept defending myself that I had not had a sip of alcohol (I take way too many prescriptions these days to mix alcohol into it all).  I wasn't on any drugs besides those prescribed to me.  When he brought up my eyes being funny again, it finally hit me!  I said wait a minute were my eyes drooping?!  My mom said "YES!! That's it excactly!  Your eyes looked really funny and that's why. They were drooping"!!  I said "Oh my gosh!  It's happened again.  You know, remember 6 months ago when I came over here early in the morning and had thought I may have had a stroke?  THAT is what was going on last night too!".  This is a really long story already, so I'll suffice it to say I was referred by my GP to a neurologist.  I made an appointment with the one my mom uses, because I already knew him, from taking my ma to her appointments.  I had another episode of this same thing happening again, just a few weeks later while waiting on my appointment with neuro.  

The neuro was a younger guy who really listened to me about my history.  He was great!  He told me though, that there was no way it was myasynthia gravis.  He explained why not, but I have this thing called fibro fog, and I honestly don't remember why it didn't fit the myasynthia gravis catagory.  He said that he thought I have either hemiplegic migraines or MS.  I told him no, I couldn't have MS because I'd already had 2 mri's on my brain and I didn't have any lesions. I told him one had been done without contrast, so then my GP had ordered one with contrast and all was good.  I then told him that it couldn't be SHM (sporadic hemiplegic migraine) because I never have had a headache at all when this happened. He started shaking his head. He said that with SHM, it's a very rare migraine and that it's way different than a "typical migraine".  He said I didn't have to have a headache with it.  He also said he wanted a new mri of my brain, but also wanted one of my neck and my spine. He said that MS doesn't always show in the brain. That it sometimes hides in your neck or spine.  Hmm ....ok, I scheduled the MRI's.  They couldn't get me in for them, for close to a month.  2 or 3 days before my MRI appointment, our whole house caught covid.  So, I had to call and cancel them, telling them we were all in quarantine for covid.  Instead of rescheduling me right then, they told me just to call them back to reschedule once I was recovered.  MISTAKE!!  In my usual fashion, I kept forgetting to do it.  

Fast forward to now.  I still haven't had the MRI's.  This has been somewhere close to 2  years ago.  To my knowledge, I haven't had any more episodes like I had in the past.  BUT, I've recently developed some new symptoms.  Symptoms worrisome enough to me, that I was going to call the neuro and get another appointment, knowing that the MRI's would need to be rescheduled.  Recently, and mostly at night. I will have random body jerks.  Or twitches. I'm not sure exactly how to describe it.  I'll be sitting here at my desk and sometimes my finger will jerk.  Sometimes my whole arm from the shoulder will jerk.  Last night my entire right side jerked. It's so weird, ya'll!  Let's just say as MY luck would have it, right when I was getting ready to call the great neuro Dr. Patti, my mom and I both received letters in the mail from the practice saying that Dr. Patti was leaving and would no longer be our doctor, but that the rest of the staff was still there to serve our needs.  UGH!!  I am horrible about going to see a new doctor.  I honestly feel like I've been traumatized in the past from mean, rude doctors bascially telling me I'm faking. Telling me that fibro isn't real.  Basically telling me I'm nothing but a fake.  I've left so many doctor offices and ER departments in tears, that the thought of going to see a brand new doctor that I don't know, causes me more anxiety than I care to share.  I know I'm going to have to though. But I'm still procrastinating picking up the phone and making that call.  I know that some of  you can relate to every word I've just said.  -And THAT is what sickens me.  It truly makes me sick that we are treated like that.  

Last night, my Ma was sitting in my office with me.  She has a recliner in here, and my computer desk chair is the ONLY piece of furniture in this house that I can sit in half way comfortably for longer than 5-10 minutes.  I have a large computer monitor so I stream tv in here on my computer and that is how I watch tv.  She saw the large jerk the right side of my body made, so all day today she's been on me to call the neuro for an apppointment with someone.  Whoever they decide to pawn me off on.  It's now 4:46pm and I haven't picked up the phone yet.  Not today.  TODAY, I'm reconnecting with my fibro froggies out there and letting you all know, that I'm back.  I'm back for good, too!  I know that my one little voice probably won't help a bit in the grand scheme of things when it comes to education and advocacy on living with chronic illnesses, but if I don't try to spread awareness, try to educate and advocate for all of us living with these nightmare illnesses, and try to advocate for research, then I can't complain when a doctor treats me like I'm crazy when I present with my symptoms. I can't complain that there isn't a cure, and I also can't complain when someone blessed enough to NOT live with a chronic pain and fatigue illness, doesn't understand where I'm coming from.  It's going to take a LOT of voices for true changes to made concerning the stigma, and for more research to be done.  And maybe ....just maybe my voice will be the one that adds to the pile of others, that give the push that's needed on these fronts.  

If I know that any of my words have touched even ONE person, or helped ONE person understand that the life we live is truly a life trapped in HELL, then every word I've typed will be worth it.  If I make ONE person feel like they aren't alone in this fight, then it's worth it.  Even though I've been MIA from this site, I still have been living my life with this blog's motto in mind.  -Never Give Up Hope!!  -Without HOPE, you don't have anything!!  I'm also am willing to once again accept interview requests, to write guest author posts, magazine articles, and life-coach.  I am once again offering seminars on how how to live with chronic pain, AND corporate seminars to educate department heads on how to accommodate workers that have chronic pain conditons.  With just a little education, employee retention and productivity can both be upped!  Also feel free to contact me if you're looking for a key-note speaker, or any type of public speaking engagement.  I'm a nationally certified clinical medical assistant who can life coach on topics involving divorce, living with chronic pain, and motivate those who want to lose weight employing basic nutritional goals with light to moderate exercise.  I've lost over 100 pounds, myself with a full RNY Gastric Bypass, and employing light exercise (we all know how hard it is to motivate ourselves to exercise when we live with chronic pain!),  I am here for you, to help motivate you and show you that you can still navigate this thing called "life" when you have chronic illnesses.  It's hard, and as before I will NEVER fluff my blog and say that anything is easy to do when you're a fibro frog or have ANY other  chronic pain illness.  

The biggest thing to remember my friends, is to Never Give up HOPE!!