Fucking fed up of feeling like shit

[geezoh]

Just wondering if anyone can help at all. My life is absolutely ruined now

im in my early 20s and really struggling with my health.

it started around Christmas time with being permanently exhausted. No matter how much I sleep, I’m shattered. The other day I had a good quality 10 hour sleep, and went out with my friends for 2 hours and was to tired I had to come home and sleep for 3 hours. It’s like that but all the time, no matter how much or little sleep I get. I feel like I’m permanently drained. That started around Christmas- I went to my GP back then and had a blood test and it was all normal. No low iron/folate/b12/vitamins- I saw all the results with my own eyes and they were well within normal. I was advised it was likely stress so I tried to destress my life but it’s made no difference.

im now getting other symptoms- horrendously itchy skin (to the extent I’ve scratched all my skin off on my neck overnight because it’s so, so itchy- I’ve had allergen testing done at the hospital which was all negative too), I’ve had random blotching on my skin but NOT from itching, it started happening out of the blue and NOT just after I had scratched it. It was like lots of little tiny red spots all up one arm- it was like red pen dots. They didn’t disappear under a glass. They went away after a week or so. I’ve also had leg weakness- it started as a weird tightness and ache in my knee and got worse until it was an ache all down my lower leg bone. I get pins and needles in my feet too. It was only on one leg but now it’s happening in the other too. I can’t fully straighten my legs because of the aching but I also can’t completely bend them without getting aching too. The best position is almost straight but slightly bend but even then I still get on and off aches. It gets really weak easily too- if I sit down even just for 5 minutes my legs are completely weak and will give way if I try and walk on them.

I’ve also had excruciating headaches that have left me physically sobbing and howling in pain

I’ve been to physio who tried several things and it has made no difference. I’ve been back to the doctor with all the symptoms I’m having and they have no suggestions other than it’s stress which I suppose it could be but I don’t feel stressed nor do I have a stressful life. Since Christmas my life has gone to complete shit and I’m fed up of it all. I’ve been back so many times and they said my age means it’s nothing serious which is a relief and also my blood test when all this started was fine, but also I feel like something just isn’t right.

does anyone have any ideas of what I should or could do? I just want to feel like I used to before this all started x

Lots of your symptoms are nonspecific so that makes it hard to get a good answer. My experience of dealing with medical stuff in my own family is that doctors start by looking for "horses, not zebras." So they're going to rule out the most likely things first. But with nonspecific symptoms there are a LOT of things to rule out, and then once you do, you have to start asking how do you know if this is actually zebras. Maybe it's camels. Maybe it's llamas.

The little red dots, that don't disappear when you put a glass over them, are probably something called petechiae. I'm not a doctor but this has come up when my kids have had rashes. Based on my totally layperson level of understanding I think that next time you get these you should go see a doctor. One good outcome of such a visit is that a medical professional will (I imagine - again, I Am Not A Doctor) look at them and say "Yup, those are petechiae" and then it will go in your chart. It'll gives them something to hang their hat on when they're trying to make a diagnosis, if you know what I mean. It will likely limit what sorts of zebras they look for, rule out camels, maybe rule in llamas, and so on.

Since you are a young woman, there are probably some conditions of development that a doctor should consider, that an older person might not. For example, you are probably still young enough that narcolepsy might be in the running (I don't think it fits the red dots though). The pins and needles make me wonder about diabetes (you are still young enough that type I diabetes is a possibility I think) or some sort of spinal problem like a compressed nerve or something. I'm just pulling ideas out of a hat, here, my point is there are a lot of possible zebras.

So far you have:
fatigue
sleeping more than usual without feeling rested (list total number of hours of sleep per day)
itching - (do you get blotchy, itchy rashes that DO go away under a glass and that look like insect bites? Those are called "hives" around here, I don't know what they call them in UK. Medical term might be urticaria but I'm not sure).
petechiae (possibly - would be nice to get a doctor to see the rash)
aching in your legs - comes and goes
pins and needles - initially one leg, now both - does this also come and go?
legs give way when you walk on them (have you actually fallen?)
headaches (one side? both sides? front? back? when do they begin? morning? night? do you vomit? do they wake you when you are sleeping? Do over the counter painkillers help at all?)

So far your descriptions of your symptoms seem good to me - you describe things in ways that are specific and objective. Keep doing that, it's a useful way to talk to doctors.

Have you been tested for rheumatoid arthritis?

My boss had very similar symptoms. She is also in her 20s and they think it is some sort of autoimmune disease possibly lupus??

I would ask for a Coeliac blood test. Symptoms of coeliac can include extreme exhaustion, neuropathy, itchy skin. Please look at the Coeliac UK website, as symptoms are wide and varied. Coeliac disease doesn’t just cause gastrointestinal symptoms. I hope you get to the bottom of this.

I would definitely be asking them to check for lupus and other autoimmune issues. Try and get the blood test while you have a rash. Your inflammatory markers will be at their highest. Another thing to test for is Lyme Disease.

Have you looked into autoimmune problems? Mine and many others’ started as seemingly random annoying unrelated problems - skin flares, very painful feet, digestive issues, for example.

Oh yep see PPs have had the same thought - rheumatoid arthritis, lupus, coeliac which pp suggested are all autoimmune. Gluten free has helped me for sure.

Why tf aren't they referring you to neurology? Could be a lot of things but you would benefit from a MRI. Sorry I feel your pain dealing with apathetic GPs.

I would recommend the book “Could it be B12?”

Is there a history of premature menopause in your family OP?

It sounds like you have Long Covid. Approximately 2 million sufferers in the UK. Search Long Covid for advice and resources. Fatigue is the number 1 symptom, followed by brain fog and headaches.

I agree it may be autoimmune. I had the same symptoms at the start of what I've now been diagnosed with - Graves' Disease (overactive thyroid). The classic tachycardia and feeling hot all the time came later. I had joint and muscle pain (I couldn't really use a pen or scissors at its worst), a rash and itching weird tingly feelings in my feet and lower legs, so tired all the time ...

If your GP did a lot of blood tests, did he include thyroid function? Some areas only do TSH, which is useless.

Please go back to the GP or pay for a private consultant

I think you might have posted about this before but then it was only affecting one leg? Is that you.

I think I mentioned then, my sister has something similar. Fortunately, by a complete fluke, she had private health care and she had every test known to man. The outcome was its anxiety. I think in your last post, if it's you, i thought that yours sounded neuropathic because it was only in one leg. But now it's gone to both legs, it's quite similar to my sister. She's eventually gone on sertraline which gave definitely made her more relaxed but it hasn't helped her symptoms a lot.
She also has balance issues. She falls. Her legs can't judge height of steps. Her legs go weak. She can't have a shower because, when she closes her eyes, she starts to fall over. She can't touch her nose with her eyes closed. She can't walk the drunk line.
Initially the doctors thought it could be ms but she was completely clear.
The positive thing is that it's not life threatening. But the negative thing is that they can't cure it.
I'm not saying that's what you've got, I hope you don't, but it does tie in with what your doctors are saying so it might be a possibility?

Check your tsh level. It could be under active thyroid

On the iron test, my hb values are always normal but if my ferritin goes below 30 I feel like the walking dead. I’m not in the UK so I have a much easier time of seeing an endo and mines a firm believer in women maintaining ferritin about 60 to feel good.

You posted before about sleeping loads and headaches and whether to go to a&e?

Here’s all the answers you received on your other thread under a different name

https://www.mumsnet.com/talk/am_i_being_unreasonable/4805312-slept-for-18-hours-yesterday-because-i-couldnt-wake-up-gp-or-ae

This, not saying it is this op but I agree, set normal levels in the UK are shocking.

Ive suffered with long covid and it sounds like some of what I’ve experienced, have you ever had a bad bout? Mine started after a bout that made me lose my smell and taste.

Were you vaccinated around that time, or in the months leading up to it starting?

My friend has all these symptoms she has Peripheral neuropathy and a host of other issues like liver disease doesn't drink to excess maybe 3 times a year) and she spends her entire weekends in bed exhausted.

Another one coming to say look at coeliacs disease, but agree with pp that you should ask the GP for autoimmune screening to widen it out.

good luck

What other bloods did they run? Did that include liver function too?

I had nearly identical symptoms to you in my early 20s. It was a condition called “Henoch Schonlein Purpura”. Took ages to get a diagnosis and it was a process of elimination rather than a specific test for that. Happy to chat via DM if you think it’s that.

Classic b12 symptoms. I have all of these with my deficiency. Were you taking any supplements 4 months prior to the test? These will skew the results. Even an energy drink will interfere with the test.

Yes I was going to say this, one of my close friends only had intense itching and then other symptoms ramped up quickly. There's evidently something going on and the GP needs to take you seriously.