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?

Much of what you describe sounds like ME/CFS, many people with ME describe their body feeling poisoned. If traditional tests come back clear ask your GP to refer you for assessment.

Some people have suggested long covid, one had said that long covid and ME are one & rhe same. She's right...There are different types of LOng Covid but one type of it is very clearly ME which develops as a post viral illness in those who caught covid.

Duloxetine: I take this and its been amazing. Haven't had any side effects.

Look up 'fatigue pacing boom and bust cycle'. If you do have MECFS it's absolutely crucial to learn how to stay within your 'energy envelope' to manage your symptoms.

If you don't have MECFS then learning to avoid the boom & bust cycle will still help you.

Thanks everyone just catching up.
yep the GP said if she does refer me the first thing neurology will ask is if I’ve tried X medication. It looks like I’m going to have to in order for them to investigate further

Thank you. What’s strange though is I have all these symptoms but I don’t have the fatigue that I feel people talk about with ME. I don’t feel like I need to sleep all day / exhaustion ? But I do feel very ill

what do you take duloxetine for - is it for the same illness? And how long have you been taking it

Thanks for sharing. Can I ask how you’ve found duloxetine?

No, for depression & anxiety. I just want to reassure you that just because side effects are possible doesn't mean you'll get them, or that you'll have to take it forever.

Sorry I missed that you're not suffering with fatigue, hopefully then it is something treatable. Keep pushing with the docs, it just takes the right one at the right time to get to the bottom of things - good luck!

I am absolutely shattered but I read about people with ME / CFS sleeping loads. I’ve not really slept anymore since it all started, I’ve just felt really really poorly. I actually wake up at 5am most days

then again I don’t have the chance to sleep all day anyway because im either at work or looking after my little boy

Fatigue is different to tiredness- it’s hard to explain. I never felt the need to sleep in the day (and it wouldn’t have helped). But I felt so low on energy, like my battery was never topped up.

Yes I agree - I made a typo I meant they will maybe do some small investigations if they feel nice and then send you back to the GP with recommendations to prescribe X and they'll completely discharge you which means if you want to see them again, you'll need a whole new referral and will be back on the waiting list but the bottom. If you haven't tried the first line treatment - but I think it still made sense to you. Honestly start is as soon as you can so you can tell them, they take it more seriously once the initial things either hasn't worked or has only worked for these symptoms for the reason I listed above around ruling things out etc. The GP is right, and I'm guessing you don't want that so work with them, and then will still do imvestigations alongisde starting you on the meds (as many have said antidepressants are not addicitve).

Have you already been referred to neurology? If so have you been given an appointment date yet?

Insist on blood test for Lyme disease

Yes, this. People think fatigue is feeling tired all the time but it's completely different and really hard to explain if you've not experienced it yourself.

People with ME often experience problems sleeping too.

I thought it was Covid and long covid too by the post.

Someone I know had lots of similar symptoms for months. Suspected POTS, MS, long-COVID, stress, several other scary options, lots of to-ing and fro-ing from various medical professionals. Anyway it turned out to be the post-viral impact of glandular fever, which was picked up by one more thorough set of blood tests having not been tested for previously by lots of other drs.

🙄🙄😂🤷‍♀️
Yes, it is what OP asked for. You’ve literally come onto OP’s thread and gone “no one answer OP’s question! She doesn’t know what’s good for her! Only I know what’s good for her!” and don’t see why that would rub people up the wrong way.

When i was ill with the flu i had really bad sore throat - it was on another level. It lasted two months. Did this person recover?

one thing I have forgot to mention and I don’t know if it’s related but I’ve also got a lump in my neck which I believe is a swollen lymph node. It’s only about the size of a pea and it’s been there a month at least. GP didn’t seem bothered though when I mentioned this

Swollen lymph nodes can be a sign of infection though such as colds or flu.

Yeah I know but it’s not disappearing- random might not be connected

I hear you - but then it sounds like your existing symptoms are not completely disappearing either, so it could be connected with that.

Have you had a full blood test done?

Yeah I’ve had a full blood test. Only thing low was ferritin at 17. That’s not new for me.
i’m currently getting more done including auto immune, vit D, full thyroid and others. But everything else was ok

well, that’s reassuring at least :)
see what the rest of your bloods say, but from what you’re describing, it sounds like post-viral effects.

I agree. It’s just so awful though I literally feel like I have flu every day. I was sick this morning my body hurts. Every day is just a battle - I can’t see the light and can’t see how a person can live like this. Especially when I work and have a young child 😢

i wish my bloods showed something though then at least I would be relived I’ve got to the bottom and it could actually be treated, whereas if it’s post viral / LC it can’t be

OP just try the medication. It's for pain and can help low mood. I took it for one day and knew it was a no go for me. If you don't try it you are increasing the chances of being g written off.

I'm sorry to tell you, your chances of being labelled a mental health case or that hideous FND label are huge in this climate.

Try the medication. It actually helps people. You would wean off gradually down the line if you come off. You've got enough to deal with, limited choices. Trying this is a good choice.

I recall your story. Doing at home testing for POTS is important. Neurologists are notoriously horrendous with this. You can't go into this not having your own understanding. I've been through all this for years.

I had all those symptoms. I have damage to autonomous and sensory nervous system caused by Sjogrens disease. Damage to the autonomic system can cause symptoms like M.E people have and causes POTS. POTS is the symptom.

It took years to pin this all down as my blood tests don't show all the autoimmune diseases.

I cannot stress enough that you must do a few things pro actively before any neurologist. You're likely to see a middle aged man who won't even knock wtf POTS is. I had to challenge every bloody idiot I saw and bring up autonomic nerve damages, sensory nerve damage and POTS to THEM. It was never the other way round.

Sorry to state the bloody obvious! But have you/are you able to take time off work and just rest? I know you said you don’t feel fatigued but you don’t feel well and it’s been going on for months.

Do you have any option of someone to look after your child?

I only saw any sign of improvement when I downed tools - I took time off work, I booked a dog walker for every day and just rested. I was doing too much because I felt I wasn’t ‘sick’ enough to rest. But in the end it was what I needed.

It’s no coincidence that far more women than men suffer from long Covid/CFS and post viral fatigue. Well they don’t know why but I think the fact that men are very good at resting when they’re ill and women usually push through as they have to with the house/kids/job. Our hormones may play a part too.

I did buy a smart watch and monitored my heartbeat. If I had pots would it go sky high? Mine never went over 110 if I recall. I’ve stopped wearing it now. What else can I do to check if it’s POTS?

I am going to try the medication.

whats helped you?

This sounds like severe health anxiety and I really don’t think these threads ever really help but just feed the anxiety.