Fibro Vs FND & Long COVID

I have gone downhill rapidly since I contracted what is possibly the worst Chest Infection I’ve had [that wasn’t Pneumonia] at the same time I unwittingly had contracted COVID sometime at the end of October 2021 (I got the PCR results on 5/11/2021). I Aspirated on a cocktail sausage, and then on coffee, on 31st October 2021, and from that I got the most Dangerous & Horrible Chest Infection I've ever experienced.

I have never recovered.

Instead, I became rapidly worse. Symptoms I had before that were mostly moderately annoying turned into SEVERE symptoms, more and more, the worse I got.

I have been in and out of Autistic Burnout my entire life. But for ONE ENTIRE YEAR, from November 2022 to November 2023, I got hit with THE WORST Autistic Burnout I have Ever Endured – and that’s including the Traumatic HELL I went through between the ages of 12 and 18.

This was the Start of the Sara Suprapubic Debacle which UTTERLY DESPTROYED the health of BOTH me AND Sara Buke completely. It severely impacted Both My Parents Severely, as well. It was Physically, Emotionally, Psychologically, Cognitively Destroying and Traumatic. We STILL Are Yet To Recover From This.

This MASSIVE BURNOUT sent what was already going wrong with me into the STRATOSPHERE. Everything became RAPIDLY Worse and Worse and WORSE since the beginning of the year [2023].]

PLEASE Read through, to understand what I MUST LIVE THROUGH, LIVE WITH, EXIST DESPITE OF…

NHS SCOTLAND has a website Detailing 14 Sections, with even MORE Subsections, on the breakdown of Symptoms of Functional Neurological Disorder.

I experience just about all of them, all the time, and I have done since the beginning of my illness & Disability, back in 2013.

NEVER BEFORE have I EVER come across ANYTHING That literally Described EVERYTHING THAT I GO THROUGH WITH THIS — AND IN SUCH IMMENSE DETAIL… I feel could have written it myself.

The symptoms started RIGHT AT THE BEGINNING [starting 31^st October 2013]… And Arguably BEFORE the Fibromyalgia Symptoms really turned up.

I have Blog Entries detailing what I was going through at the time, showing the dates things were happening.

My LEGS and Disassociation were the first SEVERE things to really turn up – I managed to go to work despite some pain; but it wasn’t long before I started to lose all the function in my legs. I was wheelchair reliant within 6 months, DEVESTATING ME (this was in fact, one part of my Worst Nightmare coming to life – the other was having to go home to live with my parents, which ALSO happened; so I’m actually Literally Existing in my LITERAL WORST NIGHTMARE).

Over the years, everything has become worse and worse. Contracting Septicaemia & Sepsis around my 37^th Birthday made things so headlong rapidly downhill even more. Then there was My Worst Chest Infection EVER whilst I also unwittingly had contracted COVID (despite shielding diligently for the entire 18+ months beforehand). Then, The Sara Suprapubic Debacle just put the final nail in my coffin it seems.

Right Now… I am Deteriorating RAPIDLY and so I NEED a specialist to look into this as URGENTLY as possible – because IF this IS FND along with Fibro, I NEED INFORMATION on How To Get It Under CONTROL.

The SAME with Long COVID, which also needs Investigating. Because I was NEVER the same after I caught it. I was VERY ILL Afterwards, and unable to mange a lot of things I had managed just fine before.

I am Working in the Dark with Guesswork. It is getting FAR TOO DANGEROUS for that, now.

I NEED to be looked at again – PROPERLY. I’ve been fobbed of with loose “Maybe’s” for a Decade, with no one able to actually tie ALL the pieces of what happens to me together.

Looking at the website for this… I FINALLY SAW ME. Like I felt when I first read about Autism and Aspergers… It was A REVELATION – that I was an ACTUAL THING, not a mystical strange creature that no one could explain, anymore!

I’ve literally given my condition its Own Name because I have NO Idea how to Explain it – I named it “Fibroplegia”. But “Fibro + Hemiplegic Migraine” does NOT come anywhere near covering everything I am going through, especially now.

With the Fibro-specific Pain & symptoms completely under control for Quite Some Time, it’s been a SHOCK to get all this other stuff like a bullet-train to the face, like the dial jumped from 5 (after Septicaemia) to 9 (after COVID + Chest Infection) to about 20,000 (with Autistic Burnout + Sara Suprapubic Debacle)…  

 Case in point -- Right now, as I write, I am shell-shocked, Utterly Exhausted & Petrified, because my downhill Dysphagia is hurtling further downhill like an out-of-control avalanche.

It’s already caused Three BAD Chest Infections. NOT including the BIG one during COVID.

Almost Every Day I aspirate on something or other, and must cough up water, coffee, food… because it’s in my lungs, not in my gastric system. It takes 20-30 minutes of Constant, HARD First Aid back-slaps to get it up sometimes. It’s PAINFUL, Traumatising, Exhausting, and SEVERELY TERRIFYING to go through.

I now have to use toddler Sippy Cups to drink water. I cannot really drink coffee anymore. I have to take my meds with chocolate pudding to be safe! Before I did this, I would Aspirate on fluids Several Times A Day, Every Single Day.

I am now PETRIFIED of taking my medications because this is what happens. It was SO Very BAD, before. But it then went Supernova after my beloved dog – unofficial support dog and the Reason I’ve Chosen To Live for the past DECADE, VERY Suddenly passed away (19/10/2023,) after a shock rush to the vet, only to be told he was already out of time.

I am still unrecovered from the shock, from the physical exertion of going out, from the Massive Fatigue of that effort – and naturally, it’s resulted in worsening of my symptoms.

A few days after that, I Aspirated SEVEN TIMES in One Day. That’s when we used the idea of the pudding and sippy cups.

My life has narrowed into Nothing. The MASSIVE level the symptoms I endure have gone beyond what I am capable of dealing with. I NEED my body BACK – if I can possibly do so, as much of it as possible. At least the ability to Swallow without nearly choking myself unconscious.

I suffer CONSTANT SEVERE BLACKOUTS & ZONEOUTS. I have had severe Disassociation since the beginning of all this.

My hands and entire body trembles and vibrate, regardless of what I do or what is happening. Agonising “Buzzing” sensations and taser-like shocks crackle everywhere more and more. I cannot play games, write, read, move, go to the bathroom, change my incontinence pants myself, sometimes not even breathe because the spasming muscles around my ribs are too tight.

I sit still, all day, every day – and if I DO do anything I PAY for it in SHEER EXHAUSTION and more Paresthesia afterwards. For days, sometimes weeks or months.

I want to go back to what I was at least before I contracted COVID.

Before I had COVID And a Severe Chest Infection that took Weeks to overcome afterwards. I cannot do that unless I know what’s going on – or is not going on. Worst case scenario turns up – then at least I finally KNOW it’s not going to get better.

It’s been a Decade since my road and journey to this point began – 200000. It took 18 months to get diagnosed with Fibromyalgia, and even then I was assured it wasn’t “degenerative”. This was either completely laughable information, or I have more than “Just Fibro”.

My Fibromyalgia symptoms are well-maintained with the meds that I am on – Zomorph changed my life [before COVID struck] and allowed me to move and live again. I did a lot [for me] and was enjoying it.

COVID created something else, and/or triggered other things going on behind the Fibro that I blindly attributed to it.

That EVERYONE has blindly attributed to it.

Looking back at everything I’ve experienced since that first date above, I’m not even convinced Fibro came first, because the quickest thing that happened was I started losing the ability to walk, alongside heightening pain that was slowly getting out of control.

This is more akin to what FND would do, not Fibro.