I feel so ill at the moment and I’m no closer to answers

[SourdoughForever]

As the title says - I’ve been feeling so unwell for years now and I just can’t seem to figure out what it is. Imagine how you feel when you have a head cold. Congested, brain fog, exhausted, irritable, bad skin, joint pain, mouth ulcers etc. But daily. I’m a 27 year old woman and I need a nap by 11am everyday. It’s getting unbearable.

I’m seeing a great GP. Thyroid issues have been ruled out, liver and kidney function is fine, no diabetes, normal cholesterol. The only thing that was very low was ferritin but I’ve been taking supplements to sort that. I’m not anemic as my haemoglobin levels were fine, but for some reason I’m just not storing iron despite eating over the recommended amount a day. The GP has now raised malabsorption issues which we will investigate next.

I’m beginning to wonder if I have an autoimmune disease and I’m now having a test for coeliac disease as I’ve suffered with gut issues all my life but it’s always been written off as IBS.

I suppose this is more of a vent than a question but I feel so alone. I just wanted to know if anyone else has ever experienced this mystery illness and was ever diagnosed with anything?!

Have you been referred to a rheumatologist? I have all those symptoms when my psoriatic arthritis is out of control. The joint pain and skin issues are a red flag to me. I'd definitely push for a referral.

I hope you get some answers too; it's bloody miserable isn't it?

@mynameiscalypso I haven't actually, but that’s a great idea and I might mention it at my next appointment. If I could describe my body in one word it would be inflamed, so you might be on to something. I’m sorry to hear you deal with that. You’re right, it’s so bloody miserable!

Sounds like coeliac to me. See what the blood test says. If the test is negative it may be worth eliminating gluten for a while and see if it helps. If positive then you’ll have to stay on gluten for the second test, but at least you’ll have answers.

@QueryA In a weird way I am sort of hoping the test for coeliac is positive because it would be an answer, but I think I’d be equally devastated if it was!

I was exactly the same at your age, it took me until I was 40 to be diagnosed with coeliac disease, my antibody test came back negative for 15 years. Then one of my kids got tummy issues and I had the genetic test (positive) and another autoimmune condition and eventually had duodenal biopsies which showed classic coeliac damage. Please push for more testing, not being diagnosed caused me fertility problems and years of feeling tired.

Could be any number of things... nutritional deficiencies, hormonal imbalances, chronic fatigue syndrome, depression... even long COVID-19?

Starring off basic, do you eat well and take a multivitamin and oil capsules?

Before I got to your third paragraph I thought coeliac. I have recently been diagnosed and had very similar symptoms, though just before the diagnosis I got very bad nausea and diarrhoea so it was a bit more obvious I suppose.

@MissSmiley that’s awful it took you so long to be diagnosed, I’m so sorry! Very interesting you had negative blood tests too. Makes you angry because if you’d been diagnosed sooner you could have avoided so much damage.

I will definitely push for an answer as I know long term of the issues it can cause x

@C1N1C I’m going to ask about vitamin deficiencies as I’m not sure if the blood work I had done would have included a full vitamin count. I’m actually very obsessive about what I eat and I track my protein, carbs, sugars etc and I do consider myself to have a really good diet. I also take omega supplements and evening primrose as it helps with period pain!

Hormonal imbalance would be a good thing to look at, but I always thought as my thyroid came back fine then it wouldn’t be hormones!

@CarpetSausage I do also have bad gut symptoms. Awful wind pain and trapped gas under my rib cage, terrible cramping around my belly button area etc. I’m also so irregular. Sometimes I’ll go to the toilet 3 times a day, other times it’s more like every 3 days!!!

A relative had all those symptoms, also had eye infections, ear and chest infections. It turned out to be Shogrens. It definitely sounds like autoimmune disease and a rheumatologist would be the right person to see. I hope you get to the bottom of it. .

@endofthelinefinally thats interesting. I’ll look into that. Dry skin is another symptom im suffering with so it does also fit.

Thanks so much, it’s miserable but I’m trying to stay positive.

I am in exactly the same boat as you, so sorry you are going through this but happy that I am not alone in this. What’s your symptoms? All my bloods came back fine also apart from my colestrol was 5.7 ( normal range 5) but was not worried about that, I have had 5 infections since January pneumonia started it off and I haven’t felt right since, I’m also due to get my gallbladder removed due to a pollop!

Have you given in a stool sample? It would be interesting to see your calprotection levels (inflammation marker for poo/see if there’s and blood in there) to rule out any gut autoimmune issues. I had all of your symptoms and have ulcerative colitis. Take care x