Losing ground on movement or my mind...my rant, sorry it's long.

[Daesin]

Over the last four months, I was very confident and motivated in my physio. I had serious orthopedic damage to my leg as a child so I know it has to come from inside me. I have to do it. I had built up a bit and was finally walking a mile every morning before noon and getting an hour of vestibular, balance and strengthening exercises in before bed.....not all at the same time mind you. My fulltime, my one job was getting back on my feet.

While this was just vertigo or leg weakness or simply unknown i kept that mentality. I just had to burn through it and get it done and there would be something positive on the other side of the discomfort and pain. PT was a place of success.

Something changed with this initial hospitalization. I experienced full body uncontrolled tremors for about 36 hours. Between at home trying to ride it out, my local ER and then being transported 4hours to another ER, well it was a long day and a half. The spasms wouldn't stop. I got high score on the blood pressure machine everytime and lots of heparin shots.

I was placed on seizure protocol due to the risk of injury. They were trying to get me squared away. So I'm not allowed to move around and they pumped me full of lots of drugs to try to make it stop. Sadly I had a very bad reaction to some of the combinations and it sent me into a spiral.I didn't sleep and just kept twitching.

Now I'm having trouble walking across the room without hanging onto everything. Is this just me giving up? Many of the symptoms that had reduced are back with a serious attitude. Everything feels amplified.

Did the Dr scramble my heart with his horrible manner? Am I flipped out over the Dx ( I don't agree with it so there is a huge obstacle there) Or did I experience some kind of pharmaceutical or physical trauma which has now effected my abilities? Maybe this is just the progression? I feel as if I have lost several months of physio. I'm in pain now where that was never a real issue before. That is probably from the pulled muscles all through my body. I can't go back to physio for a week because I picked up some kind of upper respiratory flu like crud from the hospital.

Has anyone ever felt this way? Is this a one step forward two steps back kind of adventure? Am I expecting to much?

Anyhow, thanks for enduring the eye strain.

Blessings to you all.

[Hidden]

Rant away you poor thing.

Yes medications I’ve been put on for autoimmune diseases and pain have caused a definite worsening of my balance and sensory symptoms.

I was first diagnosed with the ‘FND’ when I suffered a left sided paralysis following sepsis and medication induced pancreatitis. It turned out to be a reaction to the Tramadol which I was given as a hospital inpatient.

Then, 18 months ago, the previous misdiagnosis inspired a third neurologist with a functional agenda to diagnose me with ‘FND’ only 3 days after I’d fallen onto a toilet bowl and fractured several ribs.

Today I learnt that I have thoracic scoliosis - “probably long-standing” my rheumatologist says. This has come as a shock because I’ve had chest X-rays galore and MRIs and even a CT with contrast yet never has scoliosis (a twisted spine) been mentioned to me before.

So I have had drug allergies galore, scoliosis, significant degenerative disc disease, Sjögren’s, hypothyroidism and scleroderma with Raynaud’s, small fibre neuropathy and Erythromelagia. Also every physio and Pilates instructor and masseur I’ve seen has told me I’m hypermobile - likely classic EDS as my mum had.

Yet somehow, despite knowing all of this, a consultant neurologist still diagnosed me with ‘FND’?

And will this ever be redacted and counted as the serious misdiagnosis it in in their stats? No of course it won’t because they need to diagnose as many as possible to get their research funding rolling in. And I would have to fight hard to get it removed and the fight would make me even more traumatised than I already am!!

There I’ve ranted back at you. I’m sorry but honestly - yes drugs that are administered for neuro symptoms can definitely cause more neuro symptoms. It even says so on all the packets.

[Daesin in reply to Hidden]

Thank you for sharing. I have so much to process. I have to figure out how to get through this and personal insights, like the ones you so kindly shared, are rich windows into this world.

[Hidden in reply to Daesin]

🤗

[BlackwhiteGrey]

Ive just been reading up on an article in neurosymptoms.org to help me with my fnd, vertigo, chronic fatigue and exercise. I started feeling so hopeful that theres a way to overcome my symptoms and exercise but the more i read, it didnt make sense mainly cause it seemed that these were methods that neuros and physios have spoken about and discussed between themselves, no actual evidence that any of it worked. Ive already tried what they stated but its made me worse. Im still willing to retry what they term as GET (graded exercise therapy).

Im so sorry you are going through such a setback. Please keep us updated. Love and hugs.

[artmom in reply to BlackwhiteGrey]

BlackwhiteGrey - in reading some of the various articles posted on the site here, I’ve looked up the PACE trials, which were to do with GET possibly? Have you read about it? Totally discredited research (funded by the DWP) for people with ME/CFS saying to exercise to overcome fatigue. This advice is now stated to be wrong - wondering whether Stone’s site says something like this?

[BlackwhiteGrey in reply to artmom]

bartscfsme.org this is where it was meant to be downloadable from which is now no longer available when i tried today...which is a bit suss. Unless its just not working for me. Ive been trying to work out and try more and more each day but for the past 3 to 4 days i haven't been able to get out of bed until about 1.30 to 4.oo pm!! And ive started getting ticks in various parts of my body and more random symptoms propping up now

[BlackwhiteGrey in reply to artmom]

I'll have to look pace

[artmom]

It’s telling me the server isn’t responding...? Was this a link on neuro symptoms about GET?

[BlackwhiteGrey in reply to artmom]

Artmom yes, thats where it was! Geez, it took me a while to look for it as i forgot where i saw it.. link from neurosymptoms.org under physio/exercise