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
Electrocution type sensations
Itching like theirs ants under my skin
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💕
Written by
Lullee
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Over the years & when I was in my child uptown 20s when my children were small it was terrifying.
I've adapted my life alot over the years.
My blackouts are concerning which I don't venture out at all & definitely not alone, so weekends if one of my daughters is available or my teenage grandson comes to London to accompany me, but with other problems I usually only get slight reprieve an hour per day lately.
I totally agree and mirrors so much of what ive suffered over the last 10 years, its all in your head they say to too many different things and i am the fat one they tell its all to do with my weight, even though when all this started i was half the size, health anxiety i got told last year then they found two more major issues because i made a huge complaint - the GP actually said "these bloods will show nothing wrong, its stress! They came back with my Thyroid in a mess that had been picked up as borderline 8 years before! I love what you wrote, its very empowering to read - it can just be hard to get the GPs and Specialists to actually not just pop the Fibro label on everything - lets face it thats what they do and i told them that too, thats when i got told - if you keep digging you might find something you dont like! And i have and now im being treated, so isn't that the whole point of going to the GP?
From the weight point of view I personally can attest that yes I've maintained lean muscle mass & low body fat percentage & symptoms/conditions are still there. Chronic pain is still there. For cardiovascular reasons I totally understand but many of the medications have adverse effects on people & also having to be sedentary messes with the metabolism & BMR so it's inevitable that weight/body fat will be gained.
Losing weight & losing body fat are 2 totally different things.
Awful to get told to stop digging, you want to know what is happening to you.
Bless you, so very well put. Exactly my experiences and I’m still only 39.
It’s so demoralising how they treat you, if you depressed or even suicidal it could just push you over the edge, especially if you don’t have the support from family and friends. 💙💙
I agree that it adversely affects mental health & also huge impact on your entire life.
Suicide is definitely not the answer.
I believe many of us who suffer for donkeys years do in a certain sense 'get use to it' how I don't know because it's awful but I believe identifying & being true to ourselves & adapting & overhauling our lives/situations can offer even just a little bit of comfort ability especially mentally.x
I'm scheduled to have blood work done at some point I will suggest to check but I honestly was raised & spend any vacation time always in hot climates, which are homes on beaches👍🏼
I have an agenda pretty much like yours!😊 Sick and tired of being sick and tired.... I changed my mind, body and soul to become the most positive person I possibly can be!! Diet, (lost 4 stone) Mind, (clear all destructive thoughts/people) and Soul (positivity, relaxation, yoga and mindfulness) 🙏🏽 I still have bad days, I still have horrendous flares, but I know my own body, I know my own mind, and my soul will not be crushed by the medical professionals who don't give a damn! I GOT THIS!!!!!👊🏽 Love and blessings to you all!!🙏🏽💖 Ninja.
having just fibro makes a confusing patient for a doctor. Having a potential differential of FND or it being an additional condition makes for a more difficult diagnosis and treatment.
But tarring all doctors with your own personal experience is unfair. Even lumping all doctors that our class of patients have to deal with is unfair. A&E, paediatric, cancer, diabetes and many others are out there every day making a difference to peoples lives.
our prism that we look through of fibro does not reflect the rest of the world and the rest of the medical community. Judging all doctors on one persons experience is like judging a country on your limited experience of their inhabitants.
Having a doctor that will work with you is very important and maintaining a professional and cordial relationship helps. Doctors want to help you and slamming them is a zero sum game.
I could not agree more desquinn I think most GP's feel as frustrated has the patient. Some times the doctors bed side manner may leave a lot to be desired that is very true. But it's a bit of a blanket statement to say all doctors behave in the same way.
But the fact remains, no one knows what causes fibro and know one knows how to cure it.
I honestly feel for those doctors who really want to help. But they can only give you what they have and if it doesn't work I'm not sure what we expect them to do.
We should also remember there is also a lot more people out there with illnesses other than fibromyalgia who find themselves in the same position as people with fibro do right now.
That's why fund rasing is so important to enable the research we badly need to help find a very badly needed solution to treat Fibro. I'm sure everyone including doctors can't wait for that break through day.
So what to do in the meantime? That's the 60 million dollar question. I've had it for 35yrs and have no answers. So why would I expect a GP who never heard of it to have the answer.
These are just my own personal thoughts. But I don't think dumping all doctors in the same boat is the way forward or helpful for anyone. There are some really great doctors out there trying to do their best under very difficult conditions.
I hope everyone will have a good a day as possible 🤗🤗😘
Sorry to read that you feel that I was tarring every single doctor in the world.
Apologies it came across like that.
I'm now in my 30th year as a professional in health & fitness.
Ranging from SRN, Midwifery & then onto anatomy & physiology, dietician, psychology all the latter in an aim to understand my conditions & help others which I have helped many & will probably continue to do so as long as I exist.
I posted my experience only after reading so many on these forums same subject, more damning & I've lived & live with more than fibromyalgia, rhuematism.
My life has been saved on numerous occasions by great consultants & registrars.
I have many relatives in the health profession also.
Apologies once again for your feelings on my post.
I've lived my personal life very private & have kept everything to myself isolated & was encouraged by consultant neurologist & others to join forums etc.
Peace be with you.
desquinnPartnerVolunteerFMAUK Trustee• in reply toLullee
thank you for the context and it helps to read it with that in mind. We have had a couple of posters that appear to be bashing both individual doctors and their professions. Perhaps I have read it incorrectly after reflecting on those.
However, I think it is important to have context and understand that it is not the doctors fault that we have this condition although I do suspect some have borne the brunt of our frustration. I have the privilege to speak to consultants, GPs and other health professionals that are motivated to help us as individuals and our community.
I thought this group was to vent any bad... and good experiences that we have with our GP’s.
I really needed to do that yesterday and it helped me sooo much to know others have had similar experiences.
Most of us are in genuine pain, we are just venting, we appreciate the GP’s and the nhs system.
desquinnPartnerVolunteerFMAUK Trustee• in reply to
Hidden Venting is fine and we all do it but there is a line where we are blaming the profession or all doctors. It is not just this post but as the OP had made two similar posts and that it was highlighted to us I thought it was worth commenting on it here.
Added to this there are other posts elsewhere that comment very negatively on the profession to the extent that health professionals that have the condition have left here in the past. We all have fibro and we are here to support one another.
Hi desquin, If my Vent was one of the OP im very sorry for being fed up with being left to rot, i understand the GPs do a fantastic job with limited funds and a lot of the time their hands are tied, but i do genuinely feel very angry with how MY care over the years has gone im afraid, and when i was told that my heart stopping and skipping beats was stress for over 3 years when i was nearly passing out at the wheel of my car then ending up with heart surgery because it Wasn't stress, thats smarts a little and then when you are in agony for over 2 years as you have seen the Dr regarding a shoulder so painful you cant lay down, they tell you without even getting out of their chair that its a trapped nerve and to remove a pillow, 6 months later tell you the same and then a year later a new GP listens gets out of their chair and sends you for an MRI that comes back saying you have a torn rotor cuff and you need some help it gets a little annoying as im sure you can imagine! GPs have a tough job my GP now is wonderful and she cares but some simply do not, if that offends im sorry but we all need to vent sometimes and im saying nothing that i feel is wrong, just recently i had some very bad headaches and was told yes its all in your mind, health anxiety - i stood my ground and they found a AVM in my brain, a tangle of blood vessels that could rupture at any given moment , couple that with 8 years of having Hypothyroidism and not knowing and suffering i feel im not out of my place to have a moan! i was encouraged to join this forum as a way of letting out how low and bad some of the things make you feel, i have respect for Drs - my heart works better and i didnt die and to that consultant i owe my life, but if we cant vent and comment on what makes us feel frustrated and try and give others some advice of dont let things just fester, trust how you feel and take care of yourself then what can we do? i meant no direspect at all!
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