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

Gosh OP! That sounds totally horrible for you. Have you checked out the medical medium, I followed his principals for a month and felt amazing (but lacked the will power to go over to a completely plant based diet). He might be worth googling and adding some of your symptoms too, to see what plant based foods he suggests. I'm no way saying do this instead of proper medical treatment but it might help some of your symptoms

Do you think you may have been bitten by a tick at some point? Could be worth getting a test for Lyme disease.

Can you ask for ferritin to be checked? It’s not part of the standard bloods so needs to be added. But my DD (15) has had a lot of iron issues, blood transfusion from her first period (bleeding wouldn’t stop for a month, very heavy) and they kept saying her iron was ok, but she looked as white as a ghost (and she’s mixed race white / Asian) and going dizzy all the time. Finally they tested her ferritin and it was super super low. She was put on iron which made a big difference

Sounds like long covid to me, just like my symptoms. Nothing showed up on tests either.

Hi OP, I have a friend with Fibromyalgia - I am not saying you have this, but it might be worth having a read to see if it resonates with you. I am sorry you are feeling this way and being fobbed off at the doctor's.
One of my relatives also has Marfan's syndrome, and some of the aspects you mentioned about extreme exhaustion are similar. It is very rare and probably not this, but it certainly sounds like there is something going on. Neither of these conditions are easily picked up by GPs as they are not common, so worth having a read and if you believe it could be either of those things, bring up with your GP as possibilities.
It sounds like whatever this is, it needs further investigation. Look into switching GPs if you feel you need more support. Wishing you all the best x

What was your folic acid result? B12 cannot work properly in your body without a good supply of folic acid.
I agree your symptoms sound like B12 deficiency.
Could also be fibromyalgia, the itching skin is very common with fatigue and pain. Have you had glandular fever?

Have your bloody calcium
levels been checked? This symptoms are indicative of primary hyperPARAthyroidism which is not routinely tested for with these symptoms.

Blood not bloody!

It very much sounds like HSP, a form of Vasculitis (there are 21 types and they can overlap) and you need a referral to a Rheumatologist. A full profile of bloods needs to be carried out, including ANCA antibodies. The problem with autoimmune diseases is a lack of awareness amongst GP’s, so it’s really important that you keep pursuing this and please don’t stop until you have a referral. I have a lot of personal experience of this! The good news is that once you’re in the system, things will happen quickly (if you’re under the care of a good hospital, e.g. Addenbrookes).

You poor thing OP. Get back to the GP and ask for a referral, it definitely sounds like it could be an autoimmune condition to me. The fatigue is something I am familiar with, I have MS, dx at 40. Some of your symptoms sound familiar, but not all of them, so please try not to worry. The sooner you can get a confirmed dx of whatever is causing you to feel like this the sooner you can start some treatment. Good luck OP, I hope you start to feel better soon.

I experienced something similar in my 20s, never really got to the bottom of it- pins and needles, aching joints, permanent exhaustion, debilitating headaches. I saw my own GP and then used private medical cover through work who couldn’t pin it down either but suggested possibly fibromyalgia or arthritis, but this was never confirmed and always felt like a hypochondriac.
Eventually it started easing off, however I still get it for shorter periods (days rather than weeks) now in my late 30s. I think it was perhaps burnout/chronic exhaustion/anxiety or hormonal as it gets worse around my period now.
When I don’t feel rested from sleeping it flares up, so I try to focus on that. One Dr prescribed me low dose amitriptyline and after taking that I slept really deeply, but couldn’t take it once I had kids as it made me too drowsy.
Also taking B12/magnesium/zinc and exercising have helped.

Hello!

I’m 34 and last year had these exact same symptoms, all my bloods and tests came back normal, I was eventually diagnosed with psoriatic arthritis.

It is an autoimmune disease which is essentially when psoriasis advances as your inflammation levels rise and eventually leads to joint pain. I had none of the typical skin rashes you associate with psoriasis which is why it took so long to diagnose.

Might be worth mentioning to your doctor.

Best of luck, I hope you feel better soon ❤️

Guilain Barre Syndrome is a long covid type complication that includes muscle weakness and pins and needles.

No idea re diagnosis but it’s disgusting he GP fobbed you off and age is nothing to do with it. Make another appt, say symptoms have worsened, etc. Bloods only show some issues and there are specific tests for different things.
My guess is also auto-immune.but I’m in no way qualified - but other issues need to be ruled out first. Good luck.

Ok, sorry to add this, but , my friend in her 20s had similar symptoms and eventually diagnosed with non Hodgkins lymphoma, it doesn't show up on blood tests apparently. You need to push your gp for a referral, because although it's probably not this, it's clearly something! Best of luck

Couple of thoughts - the fatigue possibly sounds post viral /ME to me . Have you had Covid in the run up to this starting ? I had crushing fatigue after glandular fever ( Epstein Barr virus infection) for about a year when I was early twenties . Because EBV is latent ( it hides dormant in your body ) Covid triggered it agin for me and I felt terrible again for about 6 months . I also had the lower leg bone aching thing . It actually felt like it was coming from within the bone which was weird . Covid can also trigger autoimmune - but other things can do this too * - neuropathy & vasculitis as mentioned upthread .

I mention Covid because although we’ve been led to believe that covid has gone away and it’s just a cold - that’s just not always the case - and there are still fairly high levels knocking around.

(* in terms of auto immune stuff mine were triggered by the IVF/ pregnancy hormones . I was lucky because I was diagnosed by an endocrinologist . Sadly treatments are limited for autoimmune conditions but some can be managed . Mine was thyroid related - I have Graves’ disease but my symptoms were a bit different to yours .)

it saddens me that post viral conditions are still poorly understood . It’s thirty years since I had EBV and, given the way many with long Covid have been dismissed, it seems little progress has been made .

good luck and I hope that you get the help you need , have a good support network ( and a brilliant GP ) or the symptoms resolve themselves .

Has your doctor considered autoimmune as a cause? Your symptoms are similar to Lupus and some other conditions related to autoimmune problems. These can be triggered by other illnesses so you don't necessarily have symptoms from a child, it can feel like it's come on out of the blue.

Quite possibly coeliac disease. They won't test for it unless you have gasyro symptoms but lots of people never get gastro symptoms they present with nerve and skin problems. Some people don't even get that, they have fertility issues or weak teeth but doctors are honestly useless at testing for it.

I agree with the poster above - psoriatic arthritis possibly (arthritis with psoriasis) - I would get checked for autoimmune disease if I were you. Sorry you are going through this.

@geezoh was your iron and ferritin on the high side?

Go back to the GP ask to be tested for SLE (lupus) gps are that knowledgeable when it comes to lupus.
I have lupus everything you stated I have at some point stress can be a contributing factor to lupus. I was misdiagnosed for years !!!! It affected my life totally in my youth got the diagnosis at 25.

Nope, that wasn’t me.

Ask your practice manager if you can switch GPS in the same surgery. Then keep going back for appointments until you get somewhere. I too was going to suggest coeliac disease. You can also be gluten intolerant without having coeliac disease.

No, that wasn’t me under a different name. You can report to MN who will tell you so if you wish.