Just Putting This Out There Don't Get Ribbed Off By GPs or Anybody! Believe in the power of Self...

[Lullee]

Hello Everyone,

Hope today finds you well😊

I have suffered for over 22 plus years.

Basically everything begun to destruct my crazy ride with the devil begun following the birth of my youngest daughter.

The indescribable Crippling chronic pain

Migraine

Sight Loss

Hearing Loss/Disturbance

Could hardly talk

Paralysis in body/face

In/on bed for 4 months with random GPS coming & being called & just injecting me with pethidine. They had np idea but said the pain is Fibromyalgia.

They didn't want to know. They still don't want to know.

They get £300,000 approx per year to not want to know.

I know what alot of you post & have gone through & go through

It's the story of my life!

Within 22 years things progressed I have

Chronic Pain

Constant Migraine

Head Pressure

Pressure in my ears

Blindness

Seizures/Convulsions

Blackouts

Chronic Fatigue

Dystonia

Bowel IBS/Bladder problems

Paralysis my entire right side

Just like that it gives way it's beginning on my left side.

They didn't bother/care & just wanted to give me every single drug in the book. No follow ups nada/nish just "Off you trot" basically no idea , no knowledge no interest. You've got Fibromyalgia.

Overhauled & changed my entire life over the years eat clean, live clean.

I live the life of a nun.

I Was diagnosed with FND pending results from tons of other tests.

Anything that is ignored/not treated will progress/worsen/fester

Unfortunately for them I have degrees/educated in anatomy/physiology, sporting science. Educated in physical fitness & am Level 4 master of & nutritionist dietician.

"You're not silly are ya"

No I'm bluddy not!

They are aware of this!

They talk so much crap & still to this day are humiliating people & fobbing people off.

It's not ALL IN YOUR HEAD!

You are not alone🖒

There's myself & many more like me who have donkeys years of experience with this, meds, pain management & everything else.

I will say that depending on my outcome of tests whether I take legal action for my years of suffering every single day, hour, second.

Keep journals of symptoms, episodes, times, dates, recordings, videos

Anything just log it.

They've spent years handing out drugs

gabapentin antiepileptic

amnitrytilline, sertrilline & others that give you awful side effects & reap havoc on your body & mind & most of them don't work just pumping people full of more & more poison so you pee off & leave them alone.

My answer to them is for eg always is do you have clinical proof that I'm suffering with epilepsy so why are you trying to give me that fir pain & all the other tosh they want to dish out.

You've got to wise up & take control of your life, body, mind & soul everyone.

This is you, this is your life.

None of it goes away, very brief moments I've had of any of my symptoms going into remission & leave me alone. Due to me living & eating clean, avoiding negativity, stresses & refusing to put poison prescribed into my body, after years of doing so by people who don't give a damn.

They tell millions of people it's all in your head?

If it's all in your head why is it all the meds they give you to take work basically through your head CNS central nervous system etc?

They swear an oath to help & preserve life am I correct?

My circle is small my daughter's, son in laws, 4 grandchildren, my current CPN who's a star.

My GP of 15 years last year said "This is how you get, you must be use to it by now"?

I nearly gave birth to a kitten, trust me.

That ended our relationship.

Only a consultant neurologist has treated me correctly.

She was quite shocked that I'm approaching 50, I appear to her in my 30s, 5ft 2 athletic physique with lean muscle mass.

People get told that they're too fat, lose weight & it will all get better?

Diseases/disorders don't discriminate on how fat or thin you are.

But they'll give you that line "If you lose weight you'll get much better"

Really? Pfft!

Or they have advised real slim people to gain weight?

One of my best remedies is

That this is me

This is my life

I've accepted this

This is my world & that

Each One Can Teach One.

Have A Great Evening all💕

[Threewhitewesties]

Hi I hardly ever reply, just listen to all the suffering and all the neglect that is happening, i agree that by accepting the horrific changes to our bodies we can begin to learn and teach ourself to manage our symptoms and to keep sane, I like yourself was so very fit, still intelligent (some people may disagree. Lol) but I have had to make radical changes and acceptance of what my body cannot cope with other wise the consequences and suffering are so debilitating and painful I am left bed ridden for weeks on end. I have learned to minimise and rest, even with this method my body is racked with pain, but I either accept the pain and live or wither away In self pity and still be in constant pain, I too choose not to take medication as the side affects and even more damage to my body, (I am grateful this is an option I can choose as I know and understand the no medication, is not a choice for others suffering with the same condition, we each are individual enough to know what is the right treatment for ourselves. Keep strong .

[Lullee in reply to Threewhitewesties]

Hi Threewhite westies,

Hope today finds you well.

Sorry to hear of your suffering over so many years😫

We are Warriors👍🏼

My professional background is medical, health & fitness spanning 30 years.

A bodybuilder for decades also.

I take medications for other conditions/diseases but not for pain relief as I found myself many many moons ago with addictions & damaging side effects but I didn't know any better when younger & I had children to feed as a single mother so I had to earn.

I relapsed badly last September & my body started to shut down.

I have not gone a day without pain in decades but I made a conscious decision to a long time ago to continue to study, change my life, try absolutely everything to better,to cope, understand it all.

Which led me to live my own.life, in my own world, I don't keep personal friends, I don't form sexual & the like relationships, eradicated & avoid any form of stress & won't allow anything or anybody to rock my boat.

I have enough to deal with my physical & mental health & I saw no way forward.

I've been so use to this life & doing it alone I'm ok with it.

I have my grown children & 4 grandchildren who visit & speak daily & I'm good with that👍🏼

I'm 3 years post menopause, to be honest I had/have so much going on with my physical & mental health that I only notice the night sweats & nothing more hahaha!

At 45-47 my perimenopause was horrendous so maybe the gods have been kind to me post menopause Haha.

This time round I get only 60-90 minutes on any day to do what I need to do, which is frustrating but this is how it is.

I'm very glad my children are adults & have their own lives.

We've been through alot together as kids they had to deal with alot from me unwell over the years.

They have grown to be wonderful people.

Sending hugs x

[Threewhitewesties in reply to Lullee]

Hi my professional background was civil servant, support manager and 10 years territorial army, I was always physically fit and emotionally strong , than one Christmas Eve I had such a high fever and pain like I had never felt before and it never left me, I have tried to fight through this and realised the hard way that this CFS FND can not be beaten, it has left me with gastrointestinal problems , ulcers, vision problems muscle weakness in my face, hands and legs, also heart problems , I stop breathing in my sleep when my body is in poor condition.liver problems bowl and bladder problems , terrible migraines that last for-days . my dr has been understanding. My husband and three children have been supportive and my friends are there for me, they have seen the changes and grieved with me but like I tell them I am not dead and I am managing symptoms as and when they appear. I have 17 grandchildren some join our family ready made but I love them all the same, I feel sad for the younger ones as I have not been able to physical play ride bikes run swim , but I watch as there parents do all the activities, my life is unrecognisable to the person I was, I stay positive and I listen to my body if I can’t get out of bed than I don’t if I have to sleep than I do , working with this condition is the only way forward, thank you for your reply and I wish you and your family well, take care 🙂

[DNE92]

Too bloody right. They treat us as if we're dumb. Why when I am in hospital and have yet another seizure they're putting oxygen masks on me at full blast it's like being in a wind tunnel and they comment on my drop in oxygen sats (I can hear during a seizure but that's all). The answer from my "expert" FND Consultant Neurologist- you're holding your breath. Bollocks it would be physically impossible for me to hold my breath that long. Plus same Consultant has yelled at me "you're too complex for treatment". But I am fighting back. Don't remember the creation of the NHS "craddle to grave" free treatment being caveated with "unless you're complex". Get copies of your medical records folks - see what they are saying and what they are not following up on.

[CRPSplus]

Well Lullee, there's a list I recognise - symptoms AND life!

My CRPS diagnosis was four years in the making (now some years later generalised, autonomic, stage 4), and more recently we've worked out the unfathomable elements. FND. Terrible twins? You bet.

The bigotry you experience from those you don't expect it from is shocking enough, but the bull-sh1t you hear from some medical professionals can be Oscar winning. Rather than admit ignorance they'd rather pander to their over inflated ego's and offer unfounded (and often pious) comments that do more damage than good, scribble another guesstimate called a prescription and tell you to go away & come back with some fresh ideas in a few weeks. I think we've all ridden the un-merry-go-round. At one point I was taking 2700mg of Gabapentin daily (still working full time) along with Nortryptiline etc. Turned out to be absolute bleddy madness, all I was doing was pickling my liver & kidneys. Thankfully I finally got myself in front of some experts who truly knew what they were talking about (largely by my own efforts & with the support of a tremendous GP who was first to spot my CRPS), and the first thing I was advised to do was dump the drugs & we went from there.

Like the rest of us I live a life of 'lick finger & stick it in the air - see which way the wind blows today', but again like the rest of us, just have to get on, learn to manage the conditions and life in general & march on.

"Each One Can Teach One".

Agreed. Absolutely. Let's take strength from each other, our conditions make us better human beings than most of the 'able bodied'. Our abilities to understand, consider, empathise, be resilient, and stay strong for just another day almost make us super-human. Because we are.