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!!!!!!!!!

As someone who suffers with GAD (Generalised Anxiety Disorder), all you describe I have had, together, in spells lasting a few years at a go.

So it could very well be anxiety - if the doctors have reasonably excluded more serious causes I would suggest not fighting the diagnosis, but taking some treatment for it.

I get the frustration with it been put down to anxiety.
my partner has anxiety specifically health anxiety.
last weekend I started with sudden nausea and diarrhoea felt so unwell and all week all I have heard from him is that it is probably anxiety and I just need to get to the source and deal with the issue.
the source is I ate something bad and have been shitting myself all week.
it’s so annoying to be dismissed, no wonder half of the uk is on anti depressants and anxiety meds

Yes, even if you aren't currently using I believe long term use can result in chronic gastro and neurological issues so it may be worth discussing it with a hcp.

I can't see that the op has mentioned this anywhere in their posts?

I had the majority on your list. Literally felt like I was falling apart and went to my GP saying I felt like I was getting early dementia. She gave me a full blood test, including checking for B12, thyroid and vit D and turned out I had a chronic vit D deficiency. I take high dosage tablets to supplement this and have very few remaining symptoms.

Just play the game a bit. Rather than just dismissing anxiety show that you have considered it and made a concerted effort to think on it- ie written down flare ups and not noticed a correlation between increase in stressful events, that you've been proactive in seeking ways to manage this such as breathing exercises and that you'd consider treatment ALONGSIDE tests and hopefully a diagnosis for whatever else is likely going on.

I think you need a full blood work up tbh. As well as testing for the more random stuff. Have you ever had a tic bite? Lyme disease left to run rampant can cause similar symptoms. I read about a woman who’d ended up bedbound with no medical reason why who was diagnosed with Lyme. I was horribly I’ll myself and the hospital consultant tacked it into my blood panel as they were testing for everything. It came back positive and although it took ages to feel better three weeks of antibiotics stopped that creeping decline and I turned a corner.

Don't underestimate what insomnia does to the body (you were posting between 1-4am so apologies if you aren't having sleeping issues and I am just jumping to conclusions!), it can cause a myriad of physical symptoms. My mum slept poorly for years and it has had a very detrimental effect on her health.

Is it okay to ask what type as I have a lot of symptoms op lists and I’m being checked for valve issues.

How much sleep are you getting and what are you managing to eat?

Total lock of sleep can cause awful symptoms and if you aren't eating then everything like vitamin d, iron, b12 etc will drop causing further symptons.

So if you are certain it's not anxiety then what do you think it is to cause such a host of different symptoms? I would guess you have been googling and have some ideas.
I assume your Dr has done a physical examination.

100% of all the symptoms you list could indeed be due to anxiety. I am not saying they certainly are but they assuredly could be.
The fact that there are so many across different systems is biologically implausible and suggests to a Dr that this is indeed anxiety. Endocrine and autoimmune disorders can usually be ruled out on bloods and neuro ones with a careful history and examination. What else could plausibly cause all these symptoms especially with no physical signs?
You are in a very stressful life situation

What do you have to lose by trying an SSRI and some CBT?
You can do it whilst waiting for whatever referrals you think you need because a neuro referral will take many months and GPs usually cannot order head scans.
Nothing is stopping you from taking over the counter iron and vitamin supplements to see if this helps too.
For everyone who has apparently had a rare diagnosis made after many years I would reckon there will be tens or hundreds of people who have wasted money on private Drs when they have health anxiety

A walk won’t do it.
You have to burn off that adrenaline that’s pumping through your body.
Adrenalin is the fuel that helps us to fight or flight. If it’s not used it causes havoc in our bodies.
Do anything that gets the heart pumping ( burning fuel) run if you can, star jumps, shadow boxing, anything that raises your heart rate.
lots of info on YouTube.

You have some really good things to take to your GP OP but I also wanted to say don't discount stress. I suffered with anxiety for years but also had a prolonged period of huge stress and nearly all the symptoms you listed I had. My vision sometimes went black (high blood pressure apparently), the buzzy, tremor feeling in my feet and legs, whooshing in ears was hearing my pulse, sluring as my jaw was so tense I couldn't form words properly. Stress and anxiety are different and stress can have very real physical effects which then can lead to anxiety as you are so worried about what is happening to your body! Stress can also make other things harder for your body to cope with.

What is your ferritin level, and the lab ranges?

What is your B12 level, with lab ranges?

Hi,

I have a hyperactive thyroid (Graves’ disease) and my symptoms went unnoticed for quite a while/ I thought it was stress as it was immediately following a stressful period for me.

my symptoms came on quite quickly and got progressively worse over time- they were (in order of appearance)

my resting heart rate got progressively higher and I could feel my heart beating hard if I did the simplest task (I’m slim and fit). I started to wear my Fitbit more and noticed my heart rate had gone from 68 bpm average to over 102 average. During the day if I was moving around it would often go up to 160 as if I was exercising. This is actually what got me seen as I told my GP whilst on the phone to him that my heart rate was 185 and he went to go to call the local hospital endocrine department (I told him I thought I had an overactive thyroid)

diahhorrea. I’ve always had funny bowels so again didn’t notice too much at first but actually I was going to the toilet 4-5 times a day and having a loose movement every time

weight loss- as you can probably guess from the above I lost over a stone in about 6 weeks, but again, I was stressed and thought I just wasn’t eating enough. I started having protein shakes alongside my normal food and continued to lose weight for some time after starting treatment

i I was so hot I cannot stress. If I walked to work I would have to go to the toilets and take my top off and sit for 10 mins before entering the office. That was happening for a while, I feel like I had borderline symptoms for months. I’m still generally quite a hot person but it made it worse.

I couldn’t sleep- I could hear my heart beating when I went to bed and just felt wired the whole time. I actually didn’t even feel that tired most of the time because I was so wired

Some hair loss m/ thinning but I only noticed that after I was diagnosed and had a list of symptoms

internal restlessness- I felt shaky and jittery on the inside. I work in mental health so there would be times where I was watching tv and just notice that I felt really shaky and anxious, but with no context to what I felt anxious about as generally I haven’t experienced substantive anxiety before. This was very noticeable when my gp gave me propanalol to manage my symptoms before treatment started working (which is used in hyperthyroidism to manage cardio symptoms but is also sometimes prescribed for anxiety). Within about 20 minutes I was like .. oh yeah this is how I used to feel and it’s lovely …

I also had heart palpitations quite badly. I remember one time where I had like three in a row and thought I was dying.

obviously all of these symptoms do also cause anxiety in themselves and I suspect there may have been other things that I had thought were symptoms that were actually just normal

Anyway, I would suggest you get your thyroid checked out as some of what you describe does sound like this, or at least that you are producing a lot of adrenaline right now (which can be caused by stress and anxiety).

Low folic acid can mask a vitamin B deficiency, and supplementing folic acid can actually make it worse so that definitely seems to be a possibility- problem is if you take anything with vit b in it (berocca etc) then it makes the blood test higher than it actually is. I'd be supplementing with vitamin b for a while anyway but definitely speak to a doctor.

If you can afford it look at Blue Horizon and Medichecks ( they do special offers each week or month) for private blood tests.
I hope you get to the bottom of it.

I’ve had standard bloods before that don't include a thyroid test. OP did your blood test already include a check of your thyroid levels?

ME/CFS?

Somebody suggested POTS. That's also possible. POTS and ME/CFS are common co-morbidities, by the way.

Multiple sclerosis also comes to mind, along with thyroid problems. Other autoimmune diseases might have similar symptoms, and are notoriously difficult to diagnose.

I have a diagnosis of chronic migraines - treated with Ajovy as profylaxis and Sumtriptan to abort attacks. I still feel the way you're describing (except for 2 og 3 of the symptoms) on bad days - sometimes even when I don't actually have a migraine.

Sorry but that isn’t true. POTS can start after teenage years. Do you have a source for the fact that it’s just a teenage disease? I’ve never heard that before.

My friend suspects she has had POTS for a long time but it was made noticeably worse after she got covid and at that point she did get a diagnosis

OP - I am so so sorry you are going through this. In my very humble and non-medical opinion I think you are extremely stressed, perhaps more stressed that you realise. I think your body just doesn't know what to do. Have you considered that you may also be autistic?

extreme exhaustion, extreme stress, extreme worry. Totally different from anxiety.

Not at all.

Most of what you wrote and a lot of what OP wrote are symptoms of anxiety disorder (I have them as well as dc who has GAD as well as Panic disorder - all diagnosed).

This is why people think anxiety is just feeling nervous but they don't realise there's anxiety (feeling nervous or anxious about something) and there's anxiety (the disorder, feeling anxious/worry/stressed/on edge about often nothing in particular) and causes extreme exhaustion, pain, illness, etc. Anxiety disorder isn't for the weak, as they say.

I agree with @HollyKnight post above.

Not necessarily. Mine started when I was a teenager but it can also be triggered by a virus. My cardiologist believes that long Covid is actually POTS triggered by a Covid infection.

It sounds like it could be quite a lot of things, many of them that don't really have clinical indicators. That's frustrating.

It does sound like ME/CFS/Long Covid to me, but that's because I have it! It does cause POTS - it's something they focus on in the clinics. I also get the feeling that I'm slowly dying and I might not wake up.

Frustrating for you - I hope you get some answers. X