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?

interestingly I had a holiday at the start of all this and the heat made me feel more ill - I do have a 3 year old though so it wasn’t a fully relaxing holiday.

are you still suffering with LC or would you say you’re recovered ?
also did yours progress from Covid/flu or did you get better first before it started?

I had experienced all of the above symptoms after some random flu type virus back in the late 90's.
The symptoms began to spiral after having a traumatic experience of the premature birth of my 1st born (8 weeks early)
I believe the virus led dormant until it was reactivated.
All my symptoms fluctuated & after sometime the fatigued was so abnormal I even considered possible Carbon monoxide poisoning as my entire body felt poisoned!!
After decades of visiting GP's & blood tests all normal range & being fobbed with reasons "You're a busy working mum, you will feel tired!! (It wasn't tiredness it was debilitating fatigue!!) along with insomnia, body temperature dysregulation, chronic pain, nausea, dizziness, random muscle twitching, itchy skin, hives, headaches, extreme exhaustion, exercise intolerance etc, etc etc. after 20+ years I finally got diagnosed by a work occupation health consultant with CFS overlapping with fibromyalgia.
Everyday is a battlefield & the medical gaslighting has impacted my mental well being, feeling like a failure in life, having daily restrictions & grieving a life of all the could have been's!! If only my body wasn't broken!!

I believe long covid is no different to CFS & Fibromyalgia, various unknown viruses that has triggered the nervous system to dysfunction... sadly there hasn't been any real scientific tests to confirm the diagnosis, hence why the medical system dismisses so many victims of this devastating debilitating condition.

Good luck OP 🙏🏻🤞🏼🙏🏻🫶🏼

I think a holiday with a 3 year old may have been the issue. Plus you may have heat intolerance as a symptom? I only found relaxing holidays made my symptoms better. Where I was doing none of the drudgery. My kids are much older too.

I am not fully recovered but so much better than I was. The only thing I can’t do now is any exercise in zone 3 or above. So I can’t run (used to run 4 times a week). And I still have to be a bit careful with energy levels.

I had Covid (I think - I didn’t test but an awful virus). Suffered fatigue for around 6 weeks then felt better. Made the mistake of jumping back in to exercise which seemed to set me back and then I redeveloped all the original symptoms of chest pain, fatigue, stress , throat pain. Had scans and lots of blood tests. All came back fine. So official diagnosis of post viral fatigue or long covid. Which can take a long time to get better from. This all started last November. I saw improvements from May. But it was very 2 steps forward 2 steps back.

I would also like to add that my initial unknown virus was after experiencing a sore throat & flu type symptoms.
I have only been diagnosed once in my lifetime with tonsillitis again in the late 90's!
Yet after blood tests 18 months ago the GP did a random test for the Epstein Barr virus & it showed I had a positive, which he claimed I would of had the virus within the last 6 months!! Personally I don't buy this & I wonder if the virus lays dormant & reactivates itself??? 🤷🏽‍♀️ 🤔

Yes it does. I’ve read about this.

It sounds like long covid. I'm sorry it absolutely sucks feeling as ill as you do. The only thing to do is masses of rest.

https://www.sciencedirect.com/science/article/pii/S1684118225000763

This sounds awful :( did you go onto have anymore children? Have you been prescribed any medication or tried anything that has helped your symptoms ?

Lymes disease?

I don’t think I’ve been bitten. How could I know if it was this ?

Is that virus linked with auto immune diseases? Did you get tested for them

@PinkHazel If it is LC or even to get it investigated ask for a referral to respiratory as they'll be the most helpful for LC and can coordinate care. However you should try the ADs first for all the reasons PP mentioned above.

Rubbish
It is an effective medication for anxiety/ depression / pain
it is not dependency forming but you could expect to have some discontinuation symptoms when u come off them - no big deal
You have got numerous suggestions of ‘diagnosis’ here - that isn’t going to help
just send you down more rabbit holes of worry
you can continue to worry
OR
take the medication prescribed
it may well help
if it doesn’t that will help medics make a more informed picture of what is going on
no point worrying and stressing and not actually doing anything !!!

There’s a specific blood test for Lyme’s.

I think it’s really unhelpful for people to be suggesting loads of different ailments to someone with health anxiety -

how is this not going to make OP spiral ???

She asked if anyone had experienced similar and many people have - those with LC/CFS. This is how it presents.

It is a diagnosis of exclusion. So everything else is ruled out first. So you have your thyroid, vitamin D, liver, B12 everything checked. And they all come back fine. You have scans for the chest pain. They come back clear.

Antidepressants may help the OP but you can understand she wants to get to the bottom of what is wrong with her. Recommendations such as meditation and rest are never going to harm. It’s also important to understand that GPs are not great in the area of chronic pain/fatigue.

It was suggested I take steroids for energy. That is the worst thing I could have done.

Your condition sounds very like MCAS and dysautonomia. One of my DC has this post-covid. It took several years, invasive (inappropriate) treatments and multiple in-patient stays to get the diagnosis. Their symptoms are almost identical to yours.

And I think it’s really unhelpful that you’re suggesting OP take medication for a condition that she may or may not have when she hasn’t had robust assessment or testing.

That’s the point of a forum. We all give what we think is helpful advice and OP can decide which is helpful to her. You don’t get to act all high-and-mighty that your advice is better - it probably won’t help at all.

What is helpful to someone with health anxiety (and without it, frankly) is to feel heard and that they aren’t being dismissed. Dismissing their symptoms and concerns (like you have) is actually what causes someone with health anxiety to spiral. Answers or potential answers are calming.

Excellent point. I too, have felt the same way as the OP.
Sore throat for ages, vomiting, easily out of breath, totally fatigued and dragging myself around. The lethargy has been the worst I have ever felt.
I've spent a lot of time in hospitals with my Grandma and feel quite sure I caught covid about 3 months ago. I was very ill indeed and required 5 different medications simultaneously to combat it. Since then I have been exhausted and have lost my appetite for food nearly completely and only just got my sense of taste back.
Solidarity OP it's dreadful

I haven’t suggested taking a medication for a guesstimate working diagnosis

I’ve suggested OP takes the medication that has been prescribed by her GP who has access to her history / presentation etc !!!!

it’s bonkers to be adding layperson suggestions to a part story / complicated picture that is currently under investigation by medics -

but hey ho that IS what OP asked for so fair enough, I guess it will give her lots more to chew over ! (Worry about)

It's absolutely awful. I couldn't walk for 5 months and I couldn't tolerate being in the car for 3 months. I had to have blood tests in my house by the district nurse. People underestimate how badly covid can still hit people, and how people are still getting LC.

I hope you are recovering well.

The GP has predicted her anti-depressants whilst they do more tests. That’s all. Many people can choose not to take an antidepressant if they don’t want to. The antidepressants have not been prescribed to cure her of all the other symptoms nor will they get to the bottom of what is wrong with her.

It’s fine to question this and want more answers.

Pink hazel....

I did go on & I was blessed with 2 more DC (DS & 2 DD) both girls were born 2 weeks early.

Initially with all my symptoms. GP Diagnosed me with post natal depression, although I must add my initial symptoms were burnout! I wasn't depressed, but due to fatigue etc & pushing through it did have a secondary impact on my mental wellbeing. As well as the years of the medical gaslighting, making me feel it was anxiety 🤦🏽‍♀️ or normal!!

I am generally chilled out & have always looked for a positive spin on most things, however... I knew something about my daily fluctuation's with debilitating symptoms just wasn't/isn't normal.

I have remained on antidepressants since that diagnosis of PND when my son was 14 months. (He's now 27 yrs old)

After the diagnosis of CFS/Fibro I was referred to a psychiatrist 🤷🏽‍♀️ who prescribed change of antidepressants medication from fluoxetine to Duloxetine & added Quetiapine (low dose for insomnia) (I haven't had any side effects with them, apart from possible weight gain (although added stress fast tracked me into menopause at 47!! So that didn't help weight gain) (I expect to be on them for life )

The only tests I had was bloods & the majority of them were all in normal range! Apart from liver function which still fluctuates.

I have learned to pace myself & keep myself hydrated with water to help manage symptoms.

They can sometimes though - if the GP is using an AD it will be for a specific reason and if they don't work sometimes it can point out that it's not X and is more likely to be Y. Also it let's them know what sort of management to take (especially with conditions that have broad treatment options which are very different from person to person). It will likely help her until they do more investigations and it may treat the issues - some ADs help with nerve pain and do actually help the issue somewhat plus it will also help with her symptoms.

Also if you go to a consultant appointment @PinkHazel and then you haven't tried the first line many times they'll discharge (many do a few investigations and send back to GP with recommendations of prescribe x). So then it will be a waste of time because you won't get anywhere, espeically if you haven't tried it for x amount of time. Oftentimes knowing that the most obvious treatment hasn't worked at all or has only helped with x allows diagnosis to be narrowed down and will mean when she gets to secondary care they take it more seriously because she's tried the initial, basic things - otherwise they're likely to make you do it before they further investigate which I'm sure will be very unsatisfactory considering how long the issues have been happening and how long you'll likely have to wait to see a consultant - then you'll have to go back, try the med for x amount of time, and wait even longer because they'll say it's a minor issue. Whereas if the med helps with x or makes x worse - they're more likely to take it more seriously.

That particular antidepressant is very effective against pain.