How my Fibromyalgia started and the evolution of research

Hi Rachel! I would have to say - Yes, I believe the diagnosis’s are complete (for now…) and treatment options seem to be so difficult because of the varying symptoms being so widespread & not so much concentrated in 1 area or body system. From what I’m learning, our bodies are kind of like an elaborate domino structure. It all starts with that first domino - then as it moves the momentum through the course, depending on the ways in which it falls, it can take a new path. Mine seem to be branching out with multiple channels & because of this, it’s hard to find that balance of my day-to-day existence.

Over the past year, I’ve been learning about the nervous system - since it seems to be my biggest enemy & where my “Patient Zero” is within my body. Not sure whether it’s the “Central” (which i do believe it is in a lot of aspects). Or whether it’s the “Peripheral” (also having an impact). It’s all very fascinating to me, that’s for sure! Historical emotional trauma & its effect on it all, as I’m learning (even though I really didn’t give much thought to that aspect since it’s not in my daily thoughts!) has potential impact in the same geographic area of my nervous system as majority of my symptoms origination.

I feel like if I can pinpoint the exact area of my brain, spinal cord, stem, nerve or wherever everything is coming from - then I have a half a chance of fighting this terrible takeover & find “Me” again!! Puzzling how something can happen to your body & it can affect everything from your cognitive ability to your ability to comfortably sit in a chair. Or removing a wrapper to “short-grabbing” objects too many times to count because your vision is a constant reminder that “things aren’t normal”. Most people enjoy a nice boat ride or a couple glasses of wine - but when you feel like your 2-glasses deep or like you’re walking on a surface that seems to be slightly unsteady, it’s not as much fun 👎🏼 as it sounds!

How does someone NOT secretly wish their partner could experience the feeling of just 1 of their symptoms for an entire day & see how THEY feel, let alone about 10 things happening at various moments every-single-day so they understand a minuscule glimpse of what it’s like to be you & grant some empathy or compassion to the fact of what you can accomplish is an astonishing accomplishment!??? I try to stay positive, but I do find my resentment increasing as much as his has & THAT is hard to reject the anger that then comes along with it!

Is everyone surrounded “in real life” by assisting, helpful, compassionate people that allow you to be “broken” without having to still be this “super-human” like you were before?

I very much understand what you're going through. Managing wide spread chronic pain and symptoms is quite taxing physically, emotionally, and behaviorally. Its good that you're interested in understanding and learning about your condition. When I attended Mayo's 3-week Pain Rehab Center's comprehensive program, I was able to learn the science of Central Sensitization Syndrome (CSS) and how the central and peripheral nervous systems are big culprits in causing havoc in our bodies. You may be interested in this conversation about CSS and connect with others experiencing similar situations-

Has Anyone Been Diagnosed With Central Sensitization? -
https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/
How unfortunate you do not feel supported by your partner. Maybe they truly don't understand what you endure.

Mayo Clinic's Dr. Sletten beautifully explains chronic pain and symptom management here in this video:

Hang in there. I know it's challenging, but keep your chin up and know there is always hope and opportunity to grow, learn, and find joy despite conditions. You are much too young to be swallowed up by pain and not feel that you still have value. You will find YOU again! I'm looking forward to your thoughts on the video and whether it resonates with you. I hope it's a lightbulb moment. Will you please get back to me with your thoughts or questions? Have a pleasant evening.

Hello @raepent1, just checking in - how things are going for you? You were concerned about how to narrow down pain sources and origination in your nervous system. Have you had a chance to watch the Central Sensitization video from Dr. Sletten to gain any clarity?

I recently came across this helpful comment from @elmay who's dealt with fibromyalgia for a very long time and offers encouraging words about finding help through cognitive behavioral therapy (CBT) -
https://connect.mayoclinic.org/comment/913327/
Her full discussion on CBT for chronic pain is here:

Cognitive Behavioral Therapy for Chronic Pain -
https://connect.mayoclinic.org/discussion/cognitive-behavioral-therapy-forchronic-pain/
I'm wondering, @kireraw, @raepent1, @daliea - have you considered CBT as a complimentary strategy for living with fibro or other chronic conditions?

@ellyons87 Wow you have a lot of problems I'm so sorry for you .Have you seen a rheumatologist ? They deal with muscles and bones If you haven't I'd suggest you see one at Mayo or any University hospital for help .

I believe you might have Fibromyalgia but you may have other issues. I have had Fibromyalgia since 1995. I had those headaches and some of the same issues you have listed. The headache finally stopped about 3 years out. Stress makes your pain worst. I know you won’t believe this but exercise really helps your symptoms. I have been seeing an acupuncturist every month since 1997 and would not stop his treatment. He not only helps me with the pain, sleep and energy. I also take Trazodone at night.

I find I clench my jaw and other joints; they get tired, are painful and then the muscles around the area start in with referred pain. A massage, stretches learned at PT, epsom salt baths and general movement can really help. This is not a condition where you rest to relieve it: movement is key. Of course, food intolerances and lack of hydration can play a part. I've had shots in the joints, which sometimes helps, but for the long term, stretching and movement will help prevent pain.

Hello……I’ve had debilitating CFS/ME and Fibromyalgia for over 30 years. It’s been my personal experience and that of most patients that exercise actually exacerbated your symptoms. Whether one has PEM, “POST EXERTION MALAISE” or something similar, any kind of exercise or physical exertion can really be difficult to manage. Of course, there are always exceptions and anybody who can tolerate physical exertion without exacerbating their symptoms and debilitation are fortunate.
However, reading and researching most of the evidence these past 30 plus years, exercise is something that is really not promoted.
It was thought to be beneficial in the early years for patients with these disease states. However, that was mostly predicated on the belief that any exercise in general is beneficial to the body. It just isn’t true nor does it serve the well-being of most patients. Of course, doing whatever amount of stretching, yoga and exercise is beneficial as long as it doesn’t make you feel worse.
I was a very fit athlete participating in a number of sports in high school and college. As a result, I am very well versed and experienced in knowing and experiencing the difference between normal muscle soreness and fatigue that is very short lived after exerting maximum physical effort versus the very painful, long lasting pain and extended fatigue and exhaustion associated with POST EXERTIONAL MALAISE. This is nothing to take lightly or abuse.
Quite simply, if exercise on whatever level makes you feel better than it’s obviously tolerated and appropriate. If it’s anything less than that…….don’t do it.
It can spin you into a severe relapse. Just an alternative view to some of the other comments made above.

Thanks for responding to the email. I am so sorry to hear about your health issues. Fibromyalgia is mostly disabling . It is terrible when doctors and people who don’t understand the effects that this has on your physical and mental health. Because of the stress from this disease I had shingles, and a stroke early retirement was my only option. I try to stay positive and don’t talk about the pain which I have had since 1996. I now take Hydrocodone as my last resort.In truth I am really tired of this Fibromyalgia and all the pain.

Try to have a good day.
Judy

Hello! Sorry for long delays - I did watch the YouTube video! Thank you so much for sharing!!! As I watched, I did love the breakdown of things in the “All Systems-Go” realm!!! i could have misunderstood it & planned to watch a few more times to make sure I’m getting it all - but I do believe I’m pursuing exactly that approach already -
I have the typical team of specialists - Rheum, Neuro, Derm, PCP, Psychologist, Medication Mgmt, Therapist, Chiropractor, meditation/Tapping/Affirmations/Journaling as well as attempting to find a creative outlet (or any creative juice at all to flow 😉 hahaha) -
Would you agree that I am trying to come at this from all angles to ensure well-rounded approach? I’m also trying to soak up any literature/movies/blogs/YouTube channels, etc. That may have any info at all useful! I did watch the documentary - Sensitive: The Untold Story and that definitely hit close to home - before/during/after diagnosis I’ve rec’vd - so it’s nothing *new* per se, but puts it into words to be able to share with others a new aspect of how I experience the world without going deep into the depressive context.

Thank you so much for checking in - and don’t be strangers!!! I just sometimes fall off the face of the earth for a spell 🤗