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ITS NOT ANXIETY!!!!

275 replies

cassiefromlondon · 07/10/2024 01:15

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!!!!!!!!!

OP posts:
Thread gallery
8
FootieMama · 08/10/2024 18:21

I had a few of those symptoms with anemia

workplaceshenanigans · 08/10/2024 18:27

Secradonugh · 07/10/2024 05:05

Why do you believe it's not anxiety related please? Did you already suffer?
To me at least 2 thirds of your list are common anxiety and stress / exhaustion symptoms.
Some of these are fibromyalgea, thyroid and intolerance responses... I.e. auto immune and hormonal. Have you asked for estrogen level tests and what is your cycle like now? You have to ignore the hot month.

It doesn't read like 'anxiety' to me. It reads far more like extreme stress approaching total burnout. And no wonder, considering the OP's situation.

The neurological symptoms are concerning. DH is booked in for a scan tomorrow and he has fewer symptoms than that.

MMUmum · 08/10/2024 18:29

Did they check your thyroid hormone levels? I'm.sure they did if it was,full blood count, but worth asking. My other thought was low or high blood sugars, ask if they can do Hba1c which will show average blood glucose levels over the last 3 months, hope you get some answers

Soberinthecity · 08/10/2024 18:44

Anxiety manifests itself in a multitude of ways. When your nervous system is dysregulated it’ll affect you physically as well as emotionally. I’d definitely get a 2nd opinion. Your body is trying to tell you something…

MarchingOnTogether · 08/10/2024 19:25

Not quite the same symptoms, however I went to my GP with severe fatigue, feeling spaced out & bouts of vertigo. I also had occasional upset stomach and had what would be considered flu like symptoms which I'd thought was just the joy of working with young children!
I also have joint pain which was getting worse but that could be related to hypermobility and/or fibromyalgia.
Turned out to be coeliac disease!
I had no clue all those symptoms could be linked to something I was eating!
I was so lucky my GP was thoroughly with the tests. Many in a similar position get told oh its fibromyalgia or peri-menopause and suffer for years before it gets picked up but mine was really thorough and got to the route of it much quicker!
I'm not saying you have the same problem, however please go back and ask for them to test you for anything and everything as its not always am obvious answer x

MonthofSunnydays · 08/10/2024 19:39

I could have wrote this apart from the slurring and dribbling. I have the ectopic heartbeats, chest pains, extreme tiredness that seems to centre around my throat and chest. I’ve had terrible stomach pains and upset stomach and lost 10lbs in just over a month. I’ve been put on the HRT patches (3 weeks now) and ended up in a&e with chest pain and palpitations yesterday and they have made zero difference. I was anemic, but told I am just the right side of normal so that won’t be it. They have checked everything including thyroid, but not b12. I’m on statins, vitamin d, iron tablets and now they want me to take a beta blocker, which I have refused as it caused me no end of issues last time. I don’t smoke, drink, take drugs or have anything with caffeine.
Ive had a brain mri for the numbness and tingling in my face, arms and feet and it came back clear.
My holter monitor was normal, my ecg yesterday wasn’t, but they put it down to anxiety and I’m awaiting results from an echocardiogram.
My life has been ruined in the last few months. I am terrified I have some sort of arterial blockage as there is a family history of this and I have the familial cholesterol gene. I told the doctors this and you can probably guess what they told me is wrong with me….anxiety 🙄
Sometimes I just lie on my bed and let the waves of pain and horrible feelings wash over me and let the tears flow silently.
I’m sorry I can’t offer any advice, but just that you aren’t alone 💐

Ilostseptember · 08/10/2024 19:41

I would suggest under active thyroid as well. Look up the symptoms it can be serious left untreated and ask for another Dr if your current one is down with you having these horrendous symptoms. Get TSH, free T4 and T3 done. Otherwise b12 or anemia (do you have heavy periods?) low iron gives me palpitations and breathlessness, also make sure it's not thrush. Treat yourself to a capsule and see 🙈 every time I get thrush I end up dizzy and physically sick. Diabetes might be worth considering but also perimenopause, god the anxiety I got, fatigue, mood swings, headaches, vertigo and the patches were awful. I used gel now so much better.

Secradonugh · 08/10/2024 19:56

MonthofSunnydays · 08/10/2024 19:39

I could have wrote this apart from the slurring and dribbling. I have the ectopic heartbeats, chest pains, extreme tiredness that seems to centre around my throat and chest. I’ve had terrible stomach pains and upset stomach and lost 10lbs in just over a month. I’ve been put on the HRT patches (3 weeks now) and ended up in a&e with chest pain and palpitations yesterday and they have made zero difference. I was anemic, but told I am just the right side of normal so that won’t be it. They have checked everything including thyroid, but not b12. I’m on statins, vitamin d, iron tablets and now they want me to take a beta blocker, which I have refused as it caused me no end of issues last time. I don’t smoke, drink, take drugs or have anything with caffeine.
Ive had a brain mri for the numbness and tingling in my face, arms and feet and it came back clear.
My holter monitor was normal, my ecg yesterday wasn’t, but they put it down to anxiety and I’m awaiting results from an echocardiogram.
My life has been ruined in the last few months. I am terrified I have some sort of arterial blockage as there is a family history of this and I have the familial cholesterol gene. I told the doctors this and you can probably guess what they told me is wrong with me….anxiety 🙄
Sometimes I just lie on my bed and let the waves of pain and horrible feelings wash over me and let the tears flow silently.
I’m sorry I can’t offer any advice, but just that you aren’t alone 💐

Most of your symptoms are side effects of statins. (Uncommon or rare) so id suggest that you have an interaction occuring, do you also take mouth sore / thrush medication? However as this isnt the most likely cause given the timeline, i would ask have they not prescribed or told you to also take high dose vitamin C? If you are struggling to poo (side effect of iron) then get some of the evervescent vit Cs, it bonds to the iron so it is absorbed through your tummy lining with higher efficiency which can help your bowels and stop an upset tummy. If you feel you can't continue with the patch then tell your GP you want the gel instead. It has less allergy related issues than the patch and doesn't increase the chances of clots. I take it you haven't had a hysterectomy.

Crikeyalmighty · 08/10/2024 20:04

@Secradonugh statins give me a weak leg and weak feeling muscles- I am on them for high cholestr although not catastrophically high plus being overweight- I now take 2 a week which is still of goodbenefit ( I'm early 60s) but def improves my muscle issues

RogerTaylorsdrumstool · 08/10/2024 20:04

I agree with previous posters that it could be POTS.
My youngest DS was unwell for nearly 2 years before he finally got a definitive diagnosis of POTS. He had 16 off of your symptom list.
He's now on meds and so much better

MonthofSunnydays · 08/10/2024 20:06

Secradonugh · 08/10/2024 19:56

Most of your symptoms are side effects of statins. (Uncommon or rare) so id suggest that you have an interaction occuring, do you also take mouth sore / thrush medication? However as this isnt the most likely cause given the timeline, i would ask have they not prescribed or told you to also take high dose vitamin C? If you are struggling to poo (side effect of iron) then get some of the evervescent vit Cs, it bonds to the iron so it is absorbed through your tummy lining with higher efficiency which can help your bowels and stop an upset tummy. If you feel you can't continue with the patch then tell your GP you want the gel instead. It has less allergy related issues than the patch and doesn't increase the chances of clots. I take it you haven't had a hysterectomy.

Thanks for your reply. The symptoms started before I re-started the statins (I had a break from them to see if they caused the numbness and tingling, but they didn’t).
I will get some of the vitamin C to try.
I’m not having any thrush treatments and I’ve been told I need to give the patches 6-8 weeks before they will let me try the gel.

Pumpkinsoup24 · 08/10/2024 20:12

How do you know its not anxiety?

I've just spent 9 years in and out hospital under cardiology, respiratory and neurology. I've had more than 50 ECGs, two 7 days ECGs, five 24 hour ECGs, 3 echo scans, 1 heart dye scan, 3 mri scans, 1 CT scan.......countless blood tests, lung capacity test.

My heart rate is always high 120bpm or higher
My heart kept skipping beats and felt like it was jurky and fluttering all day long every day.
Severe dizziness
Numb down my face
Breathlessness
I felt like I Wass going to die and that my life as I knew it was over. They found nothing and kept saying anxiety.

I gave up caffeine and alcohol.

What yoy need to realise is anxiety doesn't mean your actually worried. It means your brain is releasing too much of a hormone, and there's nothing you can do about it, however worrying and stressing will increase symptoms.

Twentyyearsapart · 08/10/2024 20:15

@cassiefromlondon I’m sorry you’ve been struggling with all this and hope you find an answer. There are a lot of conditions that may cause these symptoms but have you looked into vestibular migraines or other vestibular disorders as these often have similar symptoms - its definitely worth talking talk to your doctor and push for some help.

Toooldtopretend · 08/10/2024 20:26

HollyKnight · 07/10/2024 05:07

Oh gosh. I haven't had any negative symptoms like that thank goodness. What strength was it? I'm only on 4000iu daily currently. I'm stubbornly chronically low but they don't give me anything stronger. I had a level of 11 nmol/L when they first checked me in (I think) 2022. Took over a year to get to 72. Then they put me on a maintenance dose and my level dropped to 24. My level in June this year was 37. The winter is going to be fun.

I recently had blood tests after I went to the docs about the rate my hair was falling out. The only thing they found was my vitamin D being down (33 compared to the minimum of 50). The doc has prescribed tablets of 40,000 units a week for 7 weeks then said I should take 1,000 a day after. Is there a reason why they won’t give you anything stronger? I know too much vit D can also be a problem but they haven’t told me when/if they will retest.

Minerbird · 08/10/2024 20:43

Intracranial hypertension? Maybe have an eye test.
Otherwise, I hope your doctor gets to the bottom of it x

catlover123456789 · 08/10/2024 20:44

Whooshing in the ears, headache and some of the other things you mention can be a sign of high brain fluid pressure (intercranial hypertension). The quickest way to find out is book an eye test with an OCT scan, they can see if the optic nerves are under pressure. That's how I found out I had it (and I'm completely in remission now).

DisabledDemon · 08/10/2024 20:46

As someone else has said, it sounds like extreme exhaustion, which would be totally understandable, given your circumstances. I've had this and could hardly get out of bed, I felt so awful. My legs felt like rubber, my balance was off, my heart was pounding and I could hardly put a coherent sentence together. My body was begging me to stop.

AdeptScroller · 08/10/2024 20:52

Could it possibly be narcolepsy with cataplexy?

Secradonugh · 08/10/2024 21:05

MonthofSunnydays · 08/10/2024 20:06

Thanks for your reply. The symptoms started before I re-started the statins (I had a break from them to see if they caused the numbness and tingling, but they didn’t).
I will get some of the vitamin C to try.
I’m not having any thrush treatments and I’ve been told I need to give the patches 6-8 weeks before they will let me try the gel.

Thank you for replying. Sorry that I couldn't give a nice easy answer for some of the pain you are in.

Amiable · 08/10/2024 21:08

ask them to check your morning cortisol levels

Dontshootthemessengers · 08/10/2024 21:19

addisons disease (lack of the stress hormone cortisol) can give a wide range of symptoms and is often mistaken for other diseases. Check to see if your blood tests included sodium, potassium, cortisol and ACTH. Good luck, be persistent

Toooldtopretend · 08/10/2024 21:22

BlackToes · 07/10/2024 06:26

You’re describing a b12 deficincy which the nhs often undertreat. Do not take tablets just yet as they will give a false heathy result, get b12 bloods done first and ask for the blood test numbers. Run these numbers past U.K. b12 facebook groups. The nhs consider anything under 200 as rubbish (with 150 being particularly rubbish) but in other countries they treat levels under 300/400/500. You can be on deaths door but often the nhs will tell you your levels are fine. The nhs often fob people off with b12 tablets (cheaper option) but these will only work if there isn’t an absorbency issue (celiac? Or just gluten sensitive?). You can request nhs b12 injections if under 200 but they are likely to make you try tablets first to see if symptoms improve. Thankfully you can pay for a private medic to give initial weekly b12 injections. Some people started self injecting during covid as the nhs swapped many from injections to tablets during covid with differing results. Other countries are much more clued up about b12. Folic levels need to be ok to aid b12 absorption

Edited

I recently had blood tests and my b12 is 195. This is claimed to be within the ‘normal’ range of 145-910 so they haven’t suggested anything needs to be done. Do you think I should question this?

BooBooDoodle · 08/10/2024 21:29

How old are you OP? Perimenopause? I had a fair few of your symptoms and I fought hard against doctors for 4 years. Too young, haven’t stopped your periods, go on the pill to lift your mood, put in a waiting list to speak to a counsellor due to anxiety to name but a few. Finally got a perimenopause diagnosis last year and had a Mirena fitted 6 months ago. Feel a lot better and some of my issues have gone or not as bad. On a better diet and exercising which before I couldn’t bring myself to do. Literally couldn’t cope some of the days.

OhNoItsThePinkyPonk · 09/10/2024 00:35

I’m really sorry to hear of the struggles you’re having, and that you and your GP don’t seem to have the right relationship to get you the answers you need. There are some sensible suggestions here in terms of extended tests you could discuss with your GP, and undoubtedly there are times a bit of persistence can lead to picking up some rarer conditions. I really hope that together you are able to make a plan that you are content with as it’s no good either for you or (genuinely) your GP to feel trapped in this cycle of normal results but worsening symptoms.

It’s unbelievably common for people to reject what can be perceived as a dismissive response from their care providers when diagnoses such as anxiety are mentioned. Clearly I don’t know how that suggestion was put to you and can’t speak to whether it was done in a compassionate and supportive or a seemingly less caring manner. Nonetheless it is what your GP seems to be going with and honestly you lose nothing by giving any treatment options they’ve suggested a go. They will be a lot more inclined to perform investigations for rare conditions if you work with them and trial whatever therapy they are offering. If it doesn’t work after a reasonable period of time then you have essentially proved your point, and they will feel listened to. It might sound strange to put it that way since they are supposed to be listening to you right, but their job isn’t easy and this isn’t America, they are hugely handicapped by resource constraints and the whims of hospital laboratories and radiology departments only to perform certain tests under strict conditions.

Again I can’t speak for your particular GP but I promise you the vast majority really, really want to help. They want to make the right diagnosis and they want you to receive the treatment you need, honestly. The way things have changed over the last few decades, with substantially reduced time for appointments and literally having to beg (in fairness equally overstretched) hospital departments to see patients has led to the enormous decrease in job satisfaction amongst primary care staff you hear about in the media. They won’t necessarily tell you this as most try and present a united ‘NHS’ front since they want to inspire confidence in the system when faced with individuals who are in pain, suffering and scared.

Please do keep going to see them but where possible see yourselves as a partnership, trying to solve a wicked problem. They have, thankfully, ruled out immediately life-threatening issues, so awful though you are feeling you have some time to work things through with them.

I don’t want to piss you off but your symptoms do fit a picture of exhaustion, frustration and significant anxiety. There may of course be an underlying deficiency or any of the myriad other suggestions previously posted, but you are clearly (and totally understandably) anxious about what your symptoms mean. With that in mind you really don’t have anything to lose by trying to address this whilst simultaneously continuing to rule out other possibilities.

I have been crippled by anxiety. It took a long time for me to accept this and I had difficult relationships with multiple GPs before I did. When I finally met a GP I clicked with, who pretty much said the same as I’ve tried to write above, I agreed to try CBT. Despite being pretty sceptical I found over time that many of the symptoms started to be less intrusive. With that I felt a lot more engaged and ultimately decided that perhaps the GP was right. That was several decades ago and I’m so grateful I found someone who made me want to trust them. It literally was life-changing.

Good luck, I sincerely hope you get the care you need and perhaps meet a GP you can build a mutually trusting relationship with.

Bronguin · 09/10/2024 08:51

Have you tried doing an elimination diet, in case it is some sort of food allergy?
I'd recommend trying the most extreme version for a couple of weeks and see if your symptoms improve.

https://www.healthline.com/nutrition/elimination-diet#TOC_TITLE_HDR_3

Allergies can be hard to track down, because they can be to a particular element of several different foods, rather than to one particular food. It took me years to discover that I'm allergic to all things fungal/fermented/yeasty/mouldy. But the first time my doctor put me on anti-fungal tablets, I'd never felt so well!

Best of luck, OP 🍀💐🍀

How to Do an Elimination Diet and Why

An elimination diet is a great way to identify food intolerances, sensitivities and allergies. Find out whether it is right for you and how to follow one.

https://www.healthline.com/nutrition/elimination-diet#TOC_TITLE_HDR_3

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