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!!!!!!!!!

I also have ME and dc has POTs (all diagnosed). I've been told by a medical professional that having GAD or Panic Disorder can cause or trigger these things too.

Do you suffer migraines, OP? Have you had an MRI to rule certain things out? A friend has always suffered severe migraines and about a year ago started experiencing some of the issues in your list. She's been diagnosed with FND.

migrainetrust.org/news/what-is-fnd-how-does-it-link-to-migraine/

I'm not a medical person but I would use the old fashioned term 'run down'. In your case severely run down. If every cause is ruled out thyroid menopause and so on then it's generally run down and your body protesting. Or this post viral fatigue syndrome. I had that once. It lasted months.

These are my most recent levels. If anyone who knows about blood results, do these look okay?

This.

@cassiefromlondon while no one on here can diagnose you, what we can do it strengthen your resolve -- the most important thing is to not ALLOW yourself to be fobbed off by the GP. Stand your ground and tell them you can't leave without getting some help, be that a referral to someone else, a second opinion form another GP in the practise whatever. You say youre a lone parent - its dangerous for you to be feeling like this and in sole charge. You need help.

Sometimes the GPs make you feel that they are right and that you are imagining it all. Even if that were the case you would need help with that.

Stand strong, make a fuss and get the help you need.

also fyi my thyroid results were within normal NHS England guidelines and the GP actually said my fog was normal & that he felt like that all the time (not able to concentrate, too scared to drive the car because I couldn't concentrate)

I refused to accept this and saw another (private) GP who said my Thyroid needed treatment and I have never felt foggy again.

I'd also get tested for coeliac disease. Doctors often only test for it if your symptoms are digestive but it can cause a range of symptoms including neurological.

I’m suffering a lot of these symptoms. I have b12 deficiency and self inject every other day. That helps me control the head pressure pain and face numbness/tingling. I’m now on iron tablets as I’ve been having awful symptoms for months, but I had to do a lot of research myself to know what numbers the blood results should be and what the NHS thinks are satisfactory. It’s a constant battle but arm yourself with knowledge about cofactors etc. There are some fantastic groups on Facebook and I actually think the B12 one I am on has saved my life.

Two things came to mind reading your symptoms: POTS and Long Covid.

Neither of them will show up on blood tests, like many other illnesses!

I hate, absolutely hate, the assumption that if blood tests are ok then it’s anxiety, esp in women. It’s lazy and means many women people spend years struggling before finally getting a proper diagnosis.

Could be anything really including ME or long covid which would not show up on any tests

I have all those symptoms - after ten years of being fobbed off and told it was anxiety, I was ventually diagnoised with chronic vestibular migraine, peripheral vestibular dysfunction, and an autoimmune condition (ulcerative colitis, in my case). I do have crippling anxiety and depression on top now, but only because I have felt so utterly bloody awful with terrifying symptoms for years and was not believed.

Look up Postural Tachycardia Syndrome. I get all the symptoms you mention, including the slurred speech. You need to see a specialist to get the proper understanding.

https://www.potsuk.org/

I hate, absolutely hate, the assumption that if blood tests are ok then it’s anxiety, esp in women. It’s lazy and means many women people spend years struggling before finally getting a proper diagnosis.

Totally agree. It's misogynistic and it's also dangerous. My condition (myasthenia) means that lots of medication is dangerous. Anaesthetics in particular. Going undiagnosed can be lethal.

Get a full clotting factor work up. Could be TIAs. How old are you? HRT/some contraceptives could contribute to these if you have a predisposition to sticky blood.

Every cause simply cannot be ruled out by the tests a GP is able to run.

I get a of these symptoms. My list of stuff to check would be (based on my diagnosed issues)

VitD levels
recheck folate/b12
Migraines - mine are mostly silent/no headache, i just get some visual disturbance, but the before/after aura and hangovers are brutal. before mimic TIA/mini strokes and afterwards i feel foggy/hung over for 24hours.

There is something called 'Vasovagal Syncope' which is similar to POT's but more to do with the vasovagal nerve than blood pressure/dysautonomia, it will still cause dizziness/palpitations/fainting though.

and, not to panic you, but i would also enquire about absence seizures.

oh, and as a fellow SN parent, how much sleep are you getting? chronic lack of sleep can severely mess up your system, like, REALLY mess it up.

This description from the NHS does cover a lot of your symptoms:
https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/

This part (copied from the Causes page) is also worth investigatingFunctional vitamin B12 deficiencySome people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.
This can happen as the result of a problem known as functional vitamin B12 deficiency, where there's a problem with the proteins that help transport vitamin B12 between cells.
This results in neurological complications involving the spinal cord.

I have supraventricular tachycardia (SVT). So my heart will be beating normally at about 70 BPM. It will suddenly start beating at 180bpm and then go back to 70 after a few minutes. I also have low blood . The STV lowers the blood pressure even more which causes a lot of the symptoms. They put me on a 24 hour blood pressure monitor and 24 hour ECG to find these issues.

Myasthenia gravis??

I had similar symptoms and (finally) got a neurology appointment because I was worried it was MS - it's not, luckily, but they diagnosed me with a condition called FND which is kind of similar but basically they can slap a label on it and discharge me from their service. Could it be something similar?

Are you on any medication?

@TigerRag only 5mg folic acid and 20mg statin

It might be a few separate issues, making it harder to resolve, all compounded by stress and extreme tiredness.

Some symptoms on your list I also had which largely resolved by starting on thyroxine - has your thyroid been checked?

Others largely resolved via HRT.

Finally, I also had whooshing and resolved using Beconase spray - eustachian tube dysfunction.

All the best.

Hi, I’ve not read the whole thread but I wanted to respond because I’m also run down to the point of exhaustion and I also have an autistic child. My symptom list is different, but I understand your frustration in not finding answers.

To my mind it is not a case of it either being a physical OR a mental health issue as it is perfectly possible to have both. In fact I think it is more usual for that to be the case. In my case I have spells of intense anxiety (which seem to come from nowhere) but most of the time I don’t feel this way. I’m a bit fed up - but that’s understandable under the circumstances.

People keep telling me it’s perimenopause, but again I’m certain that you can have hormonal imbalances AND another condition. For example, I’ve developed POTS symptoms over the past couple of years, which I don’t think are typical for menopause (my GP thinks it’s a long covid symptom). Currently trying to get hold of my own blood results to confirm/check that they are normal.

With many of my symptoms, I have no idea which are hormone related, which are POTS, which are migraine and which are something else. I’m increasingly wondering if I might also be neurodivergent (I have an autistic parent as well as my son) and to what extent this might be having an effect.