ITS NOT ANXIETY!!!!

[cassiefromlondon]

I'm going to write all the symptoms I've been suffering with daily for over a year now. I've had bloods done about three months ago and I was low on folic acid which I'm now nearly finished a course of 5mg tabs a day. I had an echocardiogram last December which came back fine. I can't cope with this anymore. It's actually scaring me now. I'm calling the doctor again tomorrow and will probably be fobbed off again. I just want to feel normal again. I'm trying to look after my severely autistic son full time and I'm finding it hard because I feel so unwell

Completely spaced out.. not with it at all
Face keeps going numb
Throbbing head
Blurred vision/even with glasses
Thumping heart beat
Feeling faint
Feeling very weak
Inside body tremors
Slurring my speech
Dribbling when trying to talk.
No energy at all
Extreme tiredness
Can hear whooshing in my ears
Dizziness severe
Can’t focus/memory loss
Breathless
Legs giving way (no strength)
No Appetite recently
Stomach cramps/dioraha
NOT ANXIETY!!!!!!!!!

Ditto this. I was on a low dose statin for years with none of the 'normal' side effects. Then I developed unsteadiness, especially going downstairs & ramps, & generalized muscle weakness. Cleared up within a few weeks.

Hi that’s a lot of symptoms OP. It might be helpful to diarise the frequency of each one of them with details of the time and situations that they occurred. Then once you have about 2 wks or more, probably a month or so, of data take it to another doctor.

I managed to convince a GP that my epilepsy meds needed reviewing by keeping a diary like this despite the fact that I hadn’t had any tonic clonic seizures. A pattern became very obvious. I kept a diary for about 2months because I became sick off 6 months of ‘wait and see, you will habituate.’

Hope that helps.

All sound like possible symptoms of Lyme disease. Do you live in a rural area? Do you go out into the countryside? Have you had a weird bullseye rash or flu like symptoms? Check the resources here Lyme Disease UK - Lyme disease charity for patient support and advice

I was going to say this too

OP google IIH and book an appointment with your optometrist just to cover your bases

^
As an autistic person who internalises I found a lot of my health issues disappeared as I changed my lifestyle/work/relationships. Stuff that I thought was purely medical

When you slur your speech does it feel as though your tongue is too big for your mouth? Do your hands ever lock in a closed grip and feel difficult to unclench? If both of these things along with stomach issues and irregular heart it could be Myotonic Dystrophy. The hand grip is called Myotonia but it comes with lots of other issues. Its an often undiagnosed condition as can only be confirmed with a genetics test. I only found out I had it when it got passed onto my daughter.

Push for a potassium test too, low potassium will make you feel like you're having a heart attack.

UPDATE... I called an ambulance yesterday afternoon I thought I was dying or having a stroke
I couldn't see and I felt I was going to loose consciousness. I had body tremors all over and couldn't walk.
I've never felt so poorly and scared in my life. I was in A&E until 1.30am
They did bloods, sugar levels, CT scan and all came back okay.
They think I'm suffering with vestibular migraines and with that it's bringing on intense panic attacks.
I'm starting to think it's all hormonal I'm 45.
Us women go through so much ☹️👎🏽
I still don't feel right today, but just knowing all tests were done has settled my mind a little.
Thank you all so much for all your replies

Oh no i'm so sorry you deteriorated.
How scary for you💐💐💐

All the best OP, that sounds absolutely horrible.

This is what I came on to say, Functional Neurological Disorder. I also have ME and POTS, all have similar symptoms.

I don’t know if this has been asked/answered, but are you on any new medication or had any existing medications increased?
I had some horrendous side effects similar to those you have listed to a blood pressure tablet I was on while pregnant (nifedipine).

It really sound like ME/ Chronic Fatigue syndrome, which by no means is it just tiredness. I've had long COVID since 2020, which has a big overlap with ME. I'm going to broadgreen Liverpool next month to see an ME/ infectious disease consultant. Bring this info to your GP. A lot are skeptical still unfortunately and follow the now widely disproven biopsychosocial model that attributes ME/CFS to be due to mental health issues!

It's a diagnosis of exclusion, show this to your GP, if they don't listen, ask to see a different GP: https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/diagnosis/

Some great resources here: https://batemanhornecenter.org/education/me-cfs/

If you need any more advice, do let me know. I wouldn't wish this on my worst enemy. Check out MCAS and orthostatic intolerance in the Bateman Horne resources, very common with this illness.x

FND is an incredibly dangerous diagnosis and one should never accept this. They're basically saying it's just a problem of function. Many still read this as meaning hysteria.

In what way is it a dangerous diagnosis?
Yes there are some who wrongly believe it is still a conversion disorder, but a lot more is now known about it. The NHS states this -FND describes a problem with how the brain receives and sends information to the rest of the body. It's often helpful to think of your brain as a computer. In someone who has FND, there's no damage to the hardware, or structure, of the brain - which is pretty much how my neurologist explained it.

That's not the reason I think it is dangerous. My worry is always that they have missed the actual physical cause and reached too easily for the FND option. Whereas if they had kept investigating they may have discovered the patient in fact had a treatable condition (or one like mine where lots of medication is contraindicated and has to be avoided or used with caution)

A lot of people with the diagnosis share your worry, as many are given it and then discharged with an instruction to go to a website! But in my case it took many years to be given the diagnosis, after many scans, tests and investigation. I am now under a wonderful community neurophysio team. If it's diagnosed properly ( and I agree it can be given without proper investigation in some cases), it is supposed to be 'ruled in' with specific neurological tests and where brain and spinal scans and tests are clear, unlike for example fibromyalgia, (which I also have a diagnosis for, but don't like to mention as every symptom I had since the diagnosis was blamed on, including gynae issues which I eventually had a hysterectomy for) which is a diagnosis of exclusion after minimal investigation.

I wish I could help, that feeling of no one will miss me for several days is a big stress and won't be helping.

Having your son at home with you makes it worse not better if he'd struggle to cope. Could you afford to have a panic button fitted so either you or son could press it and summon help.

I've long thought there should be an app where you can check yourself in and if you don't check in it withjn x hours , it would send a message to someone,( who though?) who could check on you.

Hi OP,
I was thinking of your post and the aspect that you are worried that your son couldn't call for help - I also have a young son that has special needs and is largely non verbal so I identify with your concerns.

Perhaps it would give you peace of mind to sign up with a telecare company where you check in with them each day.

Here is a screen shot from a random one from a database. I don't know the company so please do your own research.
https://www.alertacall.com/personal-users/

There is a database of telecare companies on this NHS site
https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/personal-alarms-security-systems-and-keysafes/

Does your child go to special school? Is there another mum/parent that is in a similar position and you could agree to check in with each other every day and have an emergency protocol if you can't get a response by an agreed time - e.g. hold each others keys or ask the police for a welfare check.

You could also tell the school (e.g. teacher and office( that you will never keep your child off school without letting them know and to please treat it as a safeguarding emergency if they haven't heard from you by mid morning. Ask them to keep it on file.

I hope your health improves quickly.

@Feduptosaytheleast very much what @CassandraWebb has said. Never would I trust anything the NHS says on a multitude of issues.

There are conditions that can be agonising, disabling and severely impact quality of life that are not understood by the medical profession and may not show up on a scan.
I will give you for example Ehlers Danlos Syndrome and it's multiple co morbidities. I've witnessed many young ladies in hospital with ' normal ' scans suffering immeasurably with ineffective gut motility yet told FND and all sorts. ( As a fellow EDS person, it was clear to me they had EDS).
Young ladies with ME have actually died from malnutrition due to gastroparesis and I believe many such sufferers will be told FND because their scans were clear. I witnessed this misdiagnosis 3 times in hospital over my time there.
An autoimmune condition called Sjogrens can for many insidiously attack the peripheral nervous system and cause absolutely disabling symptoms; of the sensory and autonomic system. I have this. It's an autoimmune condition. It is for many as severe as MS. No scan will show this. I myself have had to tell doctors many times what this is. I sought a specialist to biopsy and demonstrate how severely my nervous system has been attacked by an autoimmune/ inflammatory response.
Imagine being bedbound and told you have a misfiring of your brain when in reality your nervous system is being obliterated by your immune system.
There might just be hope of treatment for many if neurologists actually knew about a significant neurological condition 🤷‍♀️🤦‍♀️.

FND is lazy, cost effective, gaslighting nonsense. I would bet my life that nearly every single person diagnosed has something else going on.

I've been in your situation and mine was panic attacks and severe anxiety brought on by stress. The physical symptoms are VERY real feeling and terrifying, I ended up in an ambulance twice. The best thing I did was have CBT therapy and every time I felt any symptom I had to stop and say to myself "this is not dangerous, I am not going to die". You'll get there but the first step is accepting that there is nothing physically wrong, and the symptoms are from mental health. Once you realise you aren't going to die, you can be much more rational.

@Tittat50 what are you saying myself and others diagnosed with FND should do then? I have been having hospital appointments, stays, biopsies and operations, scans, blood tests etc, been on all sorts of different medications and treatments for the last 15 years, I have quite frankly had enough of being poked and prodded! I have struggled all that time to accept that this is what my life has become and will be going forward. The diagnosis last year was an answer for me, and now I'm questioning if I was wrong to accept it finally 😔

@Feduptosaytheleast I'm so sorry for all your struggles, and everyone else in such a position. I really can't answer your question. Your number of admissions and investigations suggests there really is something physiological going on beyond a ' malfunction '. If you can manage your symptoms and get by, then I understand entirely why just leaving it be would work best for you.

I think you may have mentioned fibromyalgia. There's another thread going on ATM with fibromyalgia in the title. There is some helpful and informative posts in there which I think you might find useful; symptom management and further insights into origin. If I can link here I will try.

https://www.mumsnet.com/talk/_chat/5183022-fibromyalgia-research

@Tittat50 i fully agree with you there!!

@Feduptosaytheleast i totally get the relief of being told ‘this is what you have’. To finally have an answer to years of feeling unwell is a relief in itself. And yes it does help accepting the illness.

But tbh, as someone who has a condition often misdiagnosed as FND, and having seen the attitude of neurologists and other consultants, I have a major issue with it.
And one of the reasons is that saying ‘it’s FND’ can actually make people worse.

eg I have ME. Often misdiagnosed as FND.
As @Tittat50 mentioned, some women have died of ME. Why?
Well you look at ME as a psychological condition and you see sensitivity to noise and sounds? They’re just playing up or are ‘over sensitive’ and need to ‘desensitise’ their nervous system
Someone suffering from gastroperesis? It’s an eating disorder. Let’s force feed them
The person educates themselves on their illness? They’re over anxious and are manipulated by family. Let’s make them walk instead. They’ll feel better.
(All of that has happened in U.K. hospitals btw in the last 6 months).
The result? People get worse and worse. And then they die. From malnutrition because they’re so unwell they can’t eat anymore.

I really wish doctors were able to recognise they dont know and offer the support available for FND (OT, physio, pain relief, aka treating the most pressing symptom) wo the need of a label that might be doing more harm than good.