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So confused - fibromyalgia and bones aching severely
Fibromyalgia | Last Active: Apr 9 6:15am | Replies (34)Comment receiving replies
Hello @raepent1, I'm Rachel, it's nice to meet you. I see my Mentor friends, Sue @sueinmn and John @johnbishop have offered their help already, and while I don't want to overcrowd, I have a ton of thoughts after learning about your health conditions, obstacles and derailment of life. I want to start by saying I hear you, I see you, I've been you, and most importantly I want to support you based on similar experience. You have such a wonderful mindset and outlook which is truly something to build from.
Your bio tells me a good amount - "I was athletic, energetic & go-go-go all my life. I work(ed) in a mgmt role = maximum multi-tasking, never-ending stress & getting too much both mentally & physically while learning to navigate my new “normal”. This makes me sad because it sucks to not be that go-go-go'er anymore and have exhaustion from sorting laundry and being a one and done tasker, but you are not alone. My life began drastically changing from corneal disease and neurological chronic pain conditions like SFN and Central Sensitization Syndrome when I was 43, and by 46 I needed to walk away from my job in management. Everything changed.
Would you say you have gotten to the point of being properly diagnosed and treated, and are now trying to figure out how to live your "new norm" the best way possible? To find quality of life even though it may need to be reimagined?
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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?