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Showing posts with label study. Show all posts
Showing posts with label study. Show all posts

Thursday, September 1, 2022

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".  


Saturday, January 13, 2018

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

Saturday, June 16, 2012

Keeping My Chin Up


My appointment with my rheumatologist was this past Thursday.  I also had to have a consult with gyn while I was there, and I had some tests ordered to do that day as well.  I knew it was going to be a long day, and it really was.  I left my house around 6:30am and I didn't get home until going on 9pm.  I was completely exhausted.

Due to some of the symptoms I've been having, and the results of one of my tests, I have to go back and have an endometrial biopsy done.  I've been told that the experience isn't pleasant, at it's best.  The doctor even warned me to take pain meds about an hour before the procedure.  I'm not looking forward to it, what-so-ever.  If it needs to be though, then it needs to be done.

My appointment with rheumatology went ok.  She marked down that my condition is "deteriorating".  My pain and insomnia flares kind of told me that though.  I didn't get my huge "miracle pill" that I was hoping for. I didn't get a med change at all, except to double my dose of amitriptyline and she added a very low dose of prozac for me to take in the mornings.  She started me at 10mg, but said if I tolerate it then in 2-4 weeks to go to 20mg each morning.  She said she didn't want my body to have to adjust to too many things at once, where she'd doubled the amitriptyline.

Besides marking on a form that my health status is deteriorating, she also wrote on the form "Fibromyalgia - widespread pain, fatigue, depression, pain all over, inability to concentrate, difficulty with memory" then "depression, anxiety, a lot of stress".  Even though I knew all of this before walking into that appointment, even that my health status was worse, it still felt kind of bad to see it in writing.  I want a job so bad; I need a job so bad, and this just reinforced to me that I'm not going to be able to ever hold a regular job.  

Right before I left, Dr. Gota told me that she's helping out with a research study and asked me if I was willing to participate.  The study is being privately funded, and it's looking for a certain protein that can be found in the white blood cells of patients with fibromyalgia and chronic fatigue.  The study may provide important information on opportunities for the development of therapeutic strategies against this disease.  They'll be looking at approx. 20 patients to take place in the study.  All I needed to do was allow them to take one tube of blood from me.  Of course, I happily signed the consent form and had the blood drawn.  I told them anything I could possibly do that might help aid in either a cure or a concrete treatment plan, I was willing to do.  I constantly preach on here about advocacy and more research needing to be done.  What kind of hypocrite would I have been to say no to them? LOL  I'll admit, it excited me and gave me a ray of hope, knowing that a new study is being conducted!  We need MORE studies and clinical trials in this field.

I'm sad knowing that my health is deteriorating.  I'm discouraged about money and how to pay my bills.  I'm worried about the endometrial biopsy and what it might show.  Through all of this, I've decided to keep my chin up and do my best to have a positive attitude.  IF my biopsy comes back bad, at least they'll have caught it.  The Cleveland Clinic is also the number 1 rated place for cancer treatment in Ohio.  Those are both positives.  I may be short around $160 (more if I have to buy any more groceries between not & then) for next months bills, but at least I have enough money to cover THIS month's bills and the hope of making enough money to cover July's bills too.  -I have my older camera, a Canon EOS Digital Rebel 300D for sale on craigslist right now.  My body may not allow me to get a "traditional" job, but I can keep the faith about getting a seminar on chronic pain and/or invisible illness going.  I may have a break, a church may donate space to me for me to hold a seminar there.  I'll find out in a week or two for sure.  Then, I'll just have to come up with a cheap way to advertise the seminar.  My health sucks, to just put it out there, but no matter how bad my health is, someone else out there has it worse.  

Education, advocacy, and awareness.  I'll never stop preaching about those three words.  Those three little words are not only my ticket to a career, but also to finding a cure for this nasty illness.  The ticket to developing a concrete treatment plan that will work.  Then, none of us will have to feel this way anymore.  A positive attitude may be the difference between succeeding or failing.  I choose to succeed.  If you know of a company, business, or organization that may be interested in helping me to succeed then please pass along this blog or the link to my "Go Fund Me" page.  If I could raise enough donations to rent space and to advertise, for 2-3 seminars, then I think I'd be set.  I'm keeping my chin up.  When the time is right in God's plan, this will all come together for me.  Of that, I'm confidant.