Please help me - desperately concerned about my health

[PinkHazel]

hi everyone,
I wrote this thread back in June after a month of being unwell.
https://www.mumsnet.com/talk/general_health/5363185-anyone-else-experienced-anything-like-this?postsby=PinkHazel
note- the sore throat was after a horrible bout of flu I had early April.

this is still ongoing but now it’s all so much worse. I am experiencing all the symptoms on this thread along with flu like symptoms, feel like I have a permanent hangover. My chest back upper stomach really hurts . I feel sick. My whole body feels like I’ve been poisoned. It’s horrendous. Some days it eases off SLIGHTLY. I am working 3 days but struggling so much I don’t know how much longer I can do this for. I have also a 3 year old. GP is doing further blood tests. Keep crying every day as I don’t know how much longer I can do this for. I have paid also for private blood tests which have a full thyroid panel on. GP has prescribed me duloxetine to help with symptoms whilst they do further tests but I’m too scared to take it as it’s an SSNI. She has said she will refer me to neurology if I don’t get any further with tests but I’m so worried I’m gunna be labelled with some post viral thing and left to rot. I am very very ill.

if anyone has ever experienced anything similar or can think of anything I can test for further?

Do you have health anxiety?

To be clear, I’m not suggesting anxiety is the cause of your symptoms but based on your comments regarding the medication I wondered if that’s at play also.

rather than googling the side effects of medication and and reading the reports that align with your fears (confirmation bias), I’d imagine discussing those with your doctor would be better so they can properly discuss potential side effects. But they have full insight into your medical history and would prescribe accordingly.

Obviously not. Would I have had to make a complaint because I never did?

Edit: I say "obviously not" but I don't know his name so maybe he was and they never told me haha

I think I do have health anxiety yes and when this all started I really did think I had some awful illness and I was really stressed out but I know these are real symptoms they are not in my head. Obviously it’s been 3 months of it now so I’m not actively worrying each day like I was at the beginning

Please take the meds. You owe it to your child as well as yourself.
If that doesn’t work, go back - but you need to try.
(Speaking as someone with serious & complex conditions that have robbed me of quality of life: sometimes you have to kiss a fair few frogs until the NHS’s Prince arrives!)

I have similar symptoms, first went to GP in Feb 2024. Have done usual tests but also 24hr ECG, scan of the heart, MRI etc all clear or “normal”.

NHS referral to neurology went through in May 2025, appointment scheduled for September. That got cancelled by NHS. Rescheduled for November 2025. I’d be surprised if I see anyone before 2026 to be frank. If you can afford to pay private, do. I’m not taking anything, the Consultant I saw before the MRI recommended a drug but I also declined when I read about the side effects. I’d rather get an actual diagnosis than experiment with drugs at this stage.

All tests coming through clear is usually LC or chronic fatigue.

I don't think you should do this - only because likely in November they'll recommend the same drug and then they'll say they won't investigate till you are on it for a while and see what happens - so delay definitive diagnosis. They may do other tests (depending on the ones you've had and also the results of previous ones) but sometimes they even delay that. I haven't had experience with neurology myself but with other specialities they've done this to me, and I would have taken the meds before if I knew/had the mini procedure which I could have done. It wasn't that I didn't want to experiment just that I didn't know x might be needed, I was even taken lots of other meds as well. I may be wrong and I don't know your situation, so sorry for getting involved but I would have liked to know before for my appointments. It just delayed tests and treatment and surgery for me, as I had to get it and wait the required time to see how it was acting.

This is going to sound v odd but I had some similar symptoms, minus the sore throat, and eventually I developed arm pain and then a frozen shoulder. The weird dizzy feelings up the back of my head were caused by the area around my shoulder having to overcompensate for lack of range of motion in my shoulder. My shoulder froze 1.5 years after the initial onset of weird symptoms. Might not be the same in your case but keep an eye on your range of motion in your arms, just in case. Probably a long shot.

Honestly you need to just take the medicine, it's so silly and frankly looks irresponsible to doctors when patients repeatedly complain about things but then wont take meds that might help. Taking meds wont stop you getting a diagnosis, it might help but they could make you feel a lot better in the meantime.

Had some bloods but didn’t include vit D at first. Got a load more which I’m waiting on results for which does include vit D x

Yes I checked my heart rate and it never really goes too high. The palps are more of a thud than racing

Thank you. This has made me emotional because my little boy is the only thing keeping me going through all of this

Over the years I’ve taken Ativan ( Lorezapam)and Sertraline (SSRI) both without side effects. I’ve also come off them without difficulty, you just need to slowly taper them down.

I think you should give the medication a try.

I had a similar awful flu in January that knocked me out for weeks and I never fully recovered. I was left with similar lingering symptoms that turned out to be severe b12 deficiency, low folate and vit D. Covid/flu infection can trigger auto immune illnesses meaning the body can't absorb properly, in my case b12. Now on twice weekly b12 Injections for life.

Ask for a b12 serum test, folate and full iron panel and Vit D as someone else has suggested, at least to rule these out.

Hope you get some answers.

You need to take the medication you've been prescribed. Otherwise how is the GP to know whether it is improving your symptoms or not? Sometimes they try a drug because it helps with condition A, and if that drug doesn't work it shows them that you don't have condition A, so they will then continue to check for other things.

I don’t know if this will help.,,,

Ive had long covid for 2 years. It was getting worse and worse. I was completely bedbound with all the symptoms to mention.

My lovely GP who knows me well said she thought some of it might be anxiety. I no didn’t believe her. The chronic fatigue clinic thought the same. The symptoms are real not psychological, the brain is trying to protect you and keep you safe. So it latches onto any symptom and then holds onto it.

l’ve had 2 out of 6 sessions with a hypnotist. My legs have stopped shaking after the 2nd session. My brain is clearer. My eyes which have been unbearable for 2 years have stopped hurting.

l didn’t expect any of this, l just saw her because my anxiety was so high. I’m mystified really.

HTH.

I was insulted that people thought it was anxiety. But if you’re a hyper vigilant person ) ie health anxiety) the brain gets confused.

lm not saying this is what you’ve got, but worth considering.

Could easily be that your body is stuck in ‘fight or flight’ mode, and things will ease with some good quality rest.

Although maybe worth reading up on the ‘MS hug’ from multiple sclerosis just in case that rings any bells.

My body is stuck in fight or flight. That’s why l tried hypnosis

If it is Long Covid/Post Viral Fatigue then you come to realise that western medicine on the whole can’t help you. I am a complete convert to eastern medicine and practices such as acupuncture (though this is now recommended by the NHS), meditation etc.

Long Covid (or the initial infection ) has been recently shown to damage to Vagus Nerve which governs our parasympathetic and sympathetic nervous systems. Hence why lots of us get stuck in this stressed flight or fight state.

If you look up vagus nerve exercises ithis can also help. There’s a good book on this called ‘The Great Nerve’.

I also found the book ‘How the mind can heal the body’ really helpful. It’s not saying our illness is in our minds, more the powerful efffect our brains can have on healing and the damaging effect stress can have on us. All of this is complicated and beyond the remit of most GPs.

This.

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Thank you this is really interesting,

what has helped you the most?

Thank you it sounds really relatable

It isn't an addictive drug, you won't become addicted to it

It’s a great question and one that is difficult to answer. It could well be pacing my activities and time. Once I realised I had long Covid and stopped trying to push through then only then did I start to very slowly get better.

I definitely found acupuncture helpful. As did a friend with LC. I think meditation has helped calm my nervous system. Plus it’s free and has so many other benefits it’s worth a try.

I felt better after holidays in the sun. Sunlight (with care and precautions) can help with mitochondria (our energy cells).

When I was at my worst my pacing was very strict - so even changing the bed linen - if I saw my heart rate go high I would sit and rest until it came down and then carry on.

I also had some luck with a low histamine diet. Inflammation can be a huge problem with this illness. I have a smart watch and noticed my stress scores went up after eating high histamine foods (tomatoes, avocado, spinach etc). And stress levels would stay high all night.

It’s a lot of trial and error as everyone is different. But only once I’d accepted I needed to rest more and try and heal my nervous system did I start to improve.