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?

Why are you too afraid to take the medicine you've been prescribed? You're really not helping yourself.

Lyme disease? Have you looked into those symptoms?

I would give the meds a go OP - they have been prescribed to you. I'd be more afraid of how I'm feeling that worrying about taking something that might actually help.

I have had your exact symptoms!!!

I first had it back in 2021 and it last for months and months. Then, back in May, it happened again. In 2021, I was told I have anxiety and it's all in my head. It was awful, I thought I was going to die. They prescribed gabapentin, propranolol, amytriptaline, acetazolamide... any drug going.

Now, I have a much better GP and they said it's two things coinciding:

1. Eustachian tube dysfunction
2. Mild anaemia.

Both have pretty easy fixes. I'm on an OTC antihistamine called fexofenadine, which helped. More than that, almost constantly trying to pop my ears (Valsalva manoeuvre) has helped immensely. Also staying hydrated (so taking dioralyte at least once a day). I'm waiting for treatment on the anaemia. I feel so much better in the space of less than a week!

Neither your symptoms or mine sound like typical Eustachian tube dysfunction but what you've described sounds like mine. I thought I was going to die. Tingling in my hands and feet, dizziness, chest pain, back pain, neck pain, nausea, sweating, palpatations, headaches, brainfog, whooshing and tinnitus.

It sounds very similar to POTS, I felt horrifically bad when I had it. Sick, dizzy, buzzy, incredibly fatigued.

I don’t know if this is the case but my gut feeling is that POTS is possible after a virus. It may have triggered MCAS too. They’re linked.

It sounds to me like you had covid, and now have long covid. You won't be left to rot, but rather that the only treatment for post viral illness is rest, so there isn't much the GP can do. Do not overdo it, as it can make you worse.

I have read up on side effects and also it’s really addictive. Once I start taking it I probably won’t be able to come off them. I’m worried it’s going to make me even worse. When I got prescribed them I really didn’t think I would be like this for 3 months I wanted to give myself chance to recover from whatever it is. I do worry that sometimes GPs just hand out ADs like sweets and it’s not addressing the problem

Did you take all the medication? What was your experience with it all?

also What was your chest pain like? That’s probably the most intense symptom for me. It feels like immense pressure in my chest/back and sometimes kind of like heartburn but 100x worse. And I can feel my heartbeat in my head.

Take the medicine that the expert has prescribed for you. You can’t complain about feeling ill and then refuse to do something quite reasonable that may well help.

Talk to your GP or pharmacist about your concerns, not a bunch of untrained randoms on the internet.

Once I start taking it I probably won’t be able to come off them

I'm sorry, but that's just not true! Millions of people are prescribed drugs like that and almost everyone comes off them perfectly well simply by tapering the dose down gradually as instructed. That is the case with lots of necessary medications.

All medications have potential side effects, including everything you've ever taken over the counter. You are highly unlikely to suffer anything more than mild side-effects. The vast majority of patients have side effects that are either very mild, or which reduce once your body adjusts.

do worry that sometimes GPs just hand out ADs like sweets and it’s not addressing the problem

They aren't prescribing it as an anti-depressant, though. Some drugs can be effective not only for depression, but also for chronic pain - this is one of them. Amitriptyline is another - it can be prescribed for depression, but it's also prescribed for things like trigeminal neuralgia which is a neuropathic pain condition.

The fact that your GP has prescribed this doesn't mean they're attributing your pain to depression - they're not fobbing you off. They are trying to treat your pain by prescribing you an appropriate medication for the type of pain you're suffering from.

You have been offered a suitable treatment to ease your pain while more investigations take place and you aren't helping yourself by refusing to take it.

Duloxetine made me feel like I had flu. Many of the symptoms you have in fact... vertigo, nausea, shaking, chills, fatigue, completely unable to function. The tremor took 2 months to go after I stopped taking it. Of course this doesn't happen to everyone but you are wise to be cautious.

Editing to add, it did help with pain but only a tiny amount, and wasn't worth it for the side effects.

2 years with debilitating long covid here. Sounds like your brain has switched to hyper vigilance and is generating your symptoms as protection. Is interesting that you’re too scared to take the medication that might help.

Lots of rest and positive thoughts.

I have and am still doing but they don’t have all the answers because there are so many symptoms. When you are desperate to get to the bottom of something sometimes it’s good to speak to others with similar experiences. People go to the GP with things all the time and don’t get to the bottom of it for years

You haven’t even bothered taking the medication you were prescribed. How is anyone to help you when you won’t even help yourself?

Everything you have said is fair and I should probably try it, I have just read some bad experiences of this medication

You’re asking randoms on here for medical advice? How about listening to what your GP says and working with the professionals instead of Dr Google, and listening to a bunch of randoms who had bad experiences although their medical histories will differ from yours?

I’m on the other SNRI Venlafaxine. It’s been very helpful.

Some people have bad experiences on paracetamol!

just take the meds. If they make you worse ease off them and stop. If they make you better that’s great.
What you can’t do is nothing. You need to try stuff or quite frankly you’ll never get out if the situation youre in.
you deserve to feel well and be happy. Try the meds. I did. Off them now. No problems at all.

I did take it all and it didn't help and was awful.

I also posted here for help and was met resoundingly with "if your GP thinks you're a mentally unstable hypochondriac then why aren't you just accepting their professional opinion? Clearly you're mentally unwell and need drugging into a stupor". I remember one GP asking what I do for work, I told them and they said "oh, that sounds really stressful, I think it's anxiety related" so, I made a note the next time to say I don't work. When I said that I got "ah, not working must be very stressful - I think it's all anxiety related". I don't think there's an answer that can be given to that question that wouldn't elicit the same reponse.

It all started very suddenly back in 2021 (also after having Covid). I was taken to hospital by ambulance and, when I was admitted, the doctor on the ward assaulted me and lied about some things. He was the one who decided I needed mental health support (I think so that, if I reported him, I wouldn't be believed) and from that point, I couldn't get anyone to believe anything other than that I was having a breakdown. I have proof of the assault and still consider reporting him but I don't even know his name. But, even saying that you're assaulted by a doctor in a hospital makes people think you're a nutter. I've not told anyone except DH about it in real life. He's the doctor who discharged me with gabapentin, acetazolamide, pregabalin, propranolol, tramadol and amytriptaline (all to take at the same time).

When it came on again recently, I was so scared - but my GPs now are so good. I've seen two at my surgery. The first suggested cluster headaches, said to go away and research/discuss and see if that lined up with my symptoms, etc. He ordered tests anyway - which found the mild anaemia but not much else. I went away and some things lined up but others didn't. I went back and saw a different GP (because the first one is away and they wanted to see me quicker). He checked my ears and could see the fluid, reviewed my blood tests, etc. The things he recommended have changed everything in just a few days.

My chest pain has gone now, I can still feel it in my back and neck a bit. I had tingling and pain on the tips of my fingers too that would hurt when typing. The whooshing/pulsing/thumping in your ears is typical for ETD.

Is this an auto immune disease? Latest blood tests include something for auto immune I believe. Thank you I think you & others do have a point about the medication. Even though it doesn’t answer what’s actually wrong with me I should probably give them a go to help in the meantime

Have you had vitamin and mineral blood tests? I was feeling absolutely awful recently and it turns out I'm vitamin D deficient. No idea how when I'm outside so much, but supppement are already working wonders.

Sounds like Long Covid as others have suggested and this can cause all the symptoms you have described. I also had the chest pain. You can get a disregulation of the autonomic nervous system. Means that you are stuck in fight or flight mode. Along with brain fog, exercise intolerance, anxiety etc.

There is no cure - only time and lots of rest and pacing. Some medications have been shown to help depending on your symptoms. GPs are not really good in this area.

Do lots of research - you may need to become your own advocate.

Have read your other thread. Did you get a smart watch to check your heart rate for POTS? Also you may want to move this to general health. You won’t get a helpful response here.

Thank you x

Any doctor who prescribed all that simulataneously would be struck off surely?

Gabapentin and Pregabalin are both controlled drugs and do the same thing.