Salutation! I am excited to share experiences together! So happy to find YOU!!

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Tashona

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Aug 24, 2023
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Salutations,

Yesterday, my path led me here to share my story to learn additional tools for my own toolbox, teach or share personal triggers, symptoms, and how some adaptions I have experienced over time. Hopefully, sharing together we will all benefit others in their own journey and then repeat information to help one another adapt, manage, and "turn down our own individual knobs".

My name is Tashona, and I am 49. years old I have had centralized nervous system syndrome or Fibromyalgia over 40 years! I am so happy to finally find like-minded understanding individuals to connect with. I have empowered myself to look for others rather than hide alone and ignore other people's thoughts you all already have encountered. Recent example, a family doctor said I am a hypochondriac or like to self-diagnose after 2.5 years of care. After trying to explain that I had already been diagnosed over 10 years ago and was discussing personal triggers and self-taught adaptions and skills to manage and compartmentalize the different daily "pains" or "moving pain". This is because I was experiencing other problems not associated with 1-4 diagnosed limitations below. Three MRIs discovered cervical stenosis in C4-7 and emergency surgery done within 30 days during Covid. Also found degenerative disk disease L5-7. I was experiencing right leg drop foot and was on a walker 6 months. Also experiencing other things now, I understand is associated with centralized nervous system syndrome. I prefer this term after hearing Dr. Nicol speak in Ireland via you-tube yesterday. She has changed my life. I wish she was my doctor.

My story: At age 4.5ish I had a brick dropped on my head from a 2nd story window. As my parent were getting a divorce my father didn't learn of this until I was in my late 30s. This event may have caused the following diagnosed disfunctions and "approximate time frames" (thanks brain fog...) for diagnoses.

1. Childhood Fibromyalgia late 30s
2. 4th Nerve Palsy High School no glasses needed but adding glasses in 40s made eyesight difficult as age progresses
3. TMJ left side of my face age 24
4. TN or Trigeminal Neuralgia late 30s
5. Cervical and lower lumbar Spondylosis / Degenerative Disk Disease

Through the years I have learned coping skills and adaptions for each limitation listed above. I learned how to live and adapt with each limitation. OMG brain fog all through school with zero sped services. I wanted to help others with limitations. I prefer this word over disabled. I have a master's degree in special education K-12. I taught four years social skills, life skills, behavior management, Cognitive Behavior Approach and then everything started to change. My adaptions and coping skills were not working! I continued as a substitute teacher and a1-on-1 behavior management para educator for 3 years because a sped teacher needs to be consistent my health did not allow it no matter how hard I pushed.

At this point, I was not able to drive and rode with the school counselor, on a walker with right side drop foot, neuropathy in left leg and arm, and still wake up with terrible right leg cramps in the middle of the night and early morning. At one point I cried when got in bed because the cold sheet hurt me so bad. My husband did not understand. The counselor bought be a heated blanket. Now I can heat the sheets before entering and it helps in winter.

After crvical stenosis surgery I can walk again. Everthing seemed grat. I returned to work. I was physiclly attached 3 times by a student and had to restrian the student until the principal arrive. I didnot want to work with this student after that and ws not asked back to the school the following year. I have been unemployed since June 2022. since December2022 I srarted working on SSDI. Current;y 65% completed. I want to teach but cannot physically meet the demands. My eyesigth changes daily. It took me several hours to write this and edit it as everything is fuzzy.
since winter 2022 everting with my other limitations has increased. The 2-inch metal plate and 6 screws in my C5-7 seems to be a Becan that turns up my knobs for all of my neurological limitations.

All of this makes up who I and have become. Every day is a new day. There are many other pieces to my puzzle, as with all of you, and your puzzle that "turn up the knobs". I know together we can achieve our greatest desire, "to turn down the knob in our brains". I am so excited to share openly without judgement.

Before watching the video and learning about this forum my first ever forum I often refer to myself as "a Goldilocks Lizard".

Please let me explain to those interested!

Have a blessed and relaxing day!

Sincerely,

Tashona
 
Hi Tashona, and welcome! Since you seem to be open to all kinds of ways of approaching the management of this, I will refer you to my post of advice on that. Maybe something there will be helpful to you.

We are glad you're here and hope that it will be beneficial to you. Feel free to ask any questions you wish. You can rant if you want to, or offer ideas to others, or get information.

 
Hi Tashona, welcome from me too. Long journey, and we can see you've got a lot on your plate, but lots of tools already to "eat" and digest it.
Don't want to spoil your about Andrea Nicol too much, but I prefer Rachel Lynch's talk on that same meeting/channel. I don't think what she says is all bad, but I disagree with quite a few points, don't subscribe to the central sensitisation syndrome explanation of fibro, simply doesn't fit to my experience of my fibro, as I for instance don't have hyperalgesia or allodynia or a low pain threshold etc. Same in your case, I can see you have loads of actual reasons and injuries for pain, it's not just knobs in our CNS that need turning, maybe that too, but it's also finding ways to get the injuries down as much as possible. However if the knobs do help you, there are quite a few things that might be good for you, like TENS or microcurrent units or vagal nerve stimulation (fairly good for me too) or neuro-stimulation.

I do greatly look forward to exchanging more ideas, like you say!
 
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