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

Wow that sounds crap. I was thinking sounds like CFS until you got the itching, pins and needles and leg weakness. Could you see another doctor? I would keep hassling them as this really doesn’t sound right.

I have CFS and take monolaurin which really helps, that may be worth a try in the meantime.

Do you recall what your B12 level l was? I know you said it was within normal limits, but often the threshold for "normal" is very low. You can be quite symptomatic at levels below 400.

These are classic B12 deficiency symptoms, though obviously it could be other things as well.

It was nearly 600 if I remember correctly so they said it was well within normal and wasn’t on the low end x

I'm in my late 40s and menopausal. Some of your symptoms sound similar to mine. Of course you're too young for the menopause, but I'm wondering if it could be hormonal.
You poor thing

@geezoh 600 is well within normal range so it's unlikely to be the B12 then.

Sorry, this sounds really difficult and frustrating. I hope you get some answers soon. Take care.

You say iron wasn’t low but what about ferritin levels? Mine are low but iron looks normal. My ferritin was 6 and I was really struggling. It was such a relief to have an answer.

Thanks for the help but It was all normal, sorry I completely missed out ferritin from my OP but it was all well within normal range not even close to low. Glad you were able to get an answer though- it’s rubbish feeling like this isn’t it x

What’s your diet like? Suggest you read the Glucose Goddess book, lots of your symptoms are in there and helped by stabilising glucose

I was thinking exactly the same but OP said she had been tested for b12 and all was fine.
I have low b12 and before medication my symptoms were exactly the same.

A lot of the symptoms sound like they match multiple sclerosis, has the doctor looked at that as a possibility?

The pins and needles is nerve damage and if you now have it in both feet your doctor needs to stop telling you that you are young and it’s nothing.
Nerve damage if it’s continuous and getting worse ( ie spread to both feet ) is irreversible.

Insist on a second opinion at your doctors or at another doctors.

I went for 15 years being fobbed off with crap about it being nothing you’re not dying, you’ve got kids what do you expect etc. My nerve damage is now in my hands and my legs up to the knee and feet. Yes it was b12 all the time.

So whatever it is, you know you are not well. So keep making the appointments. Keep asking for retesting as there is a margin of error in all tests.
Also Get an estrogen test, diabetes test, folate, vitamin D and thyroid test.
All of these things can cause exhaustion and pain.

@GulfCoastBeachGirl would b12 levels of 217 be a worry? My GP said it didn't need treatment 🤷🏼‍♀️

Can you get tested for Lyme disease?

Have you been tested for diabetes? I had very similar symptoms prior to my diagnosis.

Hi OP, I am sorry you are going through such a tough time. I strongly suggest requesting your doctor does an autoimmune disease screen (it will be a blood test for a number of 'common' autoimmune diseases such as lupus). if gp refuses to do this or it is negative, I would go see a medicine doctor (a rheumatologist is probably your best option) privately. find someone who works in your nearest regional centre (big teaching hospital) eg. UCL, Guys and St Thomas, LGI, MRI etc. Best of luck!

How crap for you @geezoh . You definitely need more tests, you can’t carry on like that. Go and see your GP again and tell them you need to find out what’s wrong. Do not be fobbed off. I hope you get sorted, what you’re describing sounds hideous. 💐

Please contact your GP as soon as you can and ask for bloods to be done. Extreme exhaustion, weakness and itching can be something serious like cancer,fingers crossed everything will be fine but please get it checked to be on the safe side. I hope my post doesn't come across to scare you. Over the years , I heard people have same sort of symptoms before getting diagnosed with cancer, Please get this investigated

OP, I’m so sorry you’re going through this. I know it FEELS like your entire life is ruined, but one day, I so, so hope for you that this period of suffering and not knowing what’s causing it turns out to be a short season in a long life. I know that’s incredibly, INCREDIBLY hard to even imagine when you’re in so much pain and you’re in the middle of it, though. So the biggest step to get out of that is a diagnosis, which I know is hard to get. Other people will have other ideas of what to check; here’s mine.

I absolutely agree with @tt9 . This sounds really autoimmune; from the fatigue to the itching. A lot of autoimmune diseases are caused by your body’s interaction with its own IgG (immunoglobulin G). When your body is in a super heightened sense of stress, and you have an autoimmune condition, this can also lead to things that act like allergic reactions, such as the itching, because it only takes a very tiny, tiny amount of some irritant to send your body over the edge into overdrive.

There are a lot of autoimmune conditions mediated by IgG that share the constellation of symptoms you’ve described (fatigue, itching, pins and needles, headaches), like lupus and arthritis. I’m aware that most people associate something like arthritis with joint pain, but in fact, joint pain may be the last symptom to show up for some people, as your inflammation rises. In these diseases, your body’s other immunoglobulins (IgA and IgM) may be higher, too. This is why an autoimmune screening will hopefully help, either determine what’s happening, or whether you have an autoimmune condition at all.

If an autoimmune screening doesn’t show anything, I would perhaps start looking into CFS/ME. If your fatigue developed first, this is another possibility, and I know it comes with headaches for some people, and a host of other symptoms, because the body is never getting enough rest.

Good luck, OP.

Are you sure you read the B12 results correctly? These are classic low B12 symptoms.

I’ve been back so many times and they said my age means it’s nothing serious.. This is such BS. I was diagnosed with a life altering chronic illness out of the blue at 19. The result of my bodies over reaction to a minor virus. I'd been perfectly healthy up till then. There's no such thing as too young and I would have no confidence in a doctor that dismissed serious symptoms as stress and too young for it to be anything serious.

My B12 was 285 when I was diagnosed with Pernicious Anemia, which is an autoimmune disease. I'm on B12 injections for life.

It's weird, I had no symptoms at all and certainly no fatigue, etc. This was picked up during routine bloodwork. But recently I've developed that crazy, intense itching that the OP described. It's absolutely maddening! Not unusual for autoimmune conditions from what I understand.

I’ve had a lot of these symptoms due to an under active thyroid - has that been checked?

Have you been tested for coeliac disease? Fatigue, muscle and joint pain, headaches, rashes and numbness and tingling are all symptoms. Not everyone gets gastrointestinal symptoms.

Your description of the fatigue and the non- blanching rash made me think of my daughter’s condition, HSP. She had sore joints, tummy pains and headaches too.

She described the fatigue as feeling totally wiped, even when lying down. The rash came up on her legs initially and then down one arm.

It’s an auto-immune condition and a form of vasculitis - of which there are many forms. My daughter is in remission now but like you, her condition came out of the blue and foxed our GP. It wasn’t till she ended up in A and E with the weird rash (a bit like meningitis rash) that she got diagnosed.

I hope you get a diagnosis soon. Definitely pursue the auto-immune route … and insist on a referral. Poor you, it sounds miserable.