What the hell is wrong with me?

[isshoes]

Sorry but I’m posting here for traffic as am desperate.

I have had a poor immune system for about 10 years. Specifically, I am very prone to skin issues. If I get a cold virus, I develop chicken pox type spots and horrid mouth ulcers, plus an exciting array of other conditions (in the past these have included conjunctivitis and molluscum contagiosum).

I’ve been to the doctors about it numerous times. They’ve tested me for everything under the sun and I have none of the usual conditions that would cause immunity problems. I was also tested for chicken pox immunity in pregnancy, which I have, and paid privately to have a blood test to rule out herpes simplex.

Today I have possibly my worst ever outbreak. I have the sorest throat I can remember - swallowing is agony. I’ve tried paracetamol, codeine, ibuprofen, naproxen (not all at once) and salt water rinses, and nothing has helped. I haven’t slept. I have a blocked up nose and about 5 horrific mouth ulcers, and 6-8 of these blister sores on my face. And for some reason, my hands and feet are hurting, though there is no rash there.

I’m at a complete loss of what to do. I might go to the GP but based on previous experience they’ll swab the sores and find nothing of interest, and tell me it’s a virus. They may test me for diabetes again for the umpteenth time, but none of it will help.

Any ideas or suggestions please?

Oh, in the interests of full disclosure, I have an autoimmune liver condition, but my liver specialist has always said he doesn’t believe it should be impacting on my general immunity, and that my immune profile looks fine.

I’m not sure if it’s any help but I had similar when I was a child and I spent a lot of time getting tests and at one point they even thought I may have leukaemia. It was the oncology department that found out I was having allergic reactions to some viruses.
After they discovered that it started railing off and I’ve never had anything in years.

God OP, you poor thing. I have no medical training whatsoever but have experienced similar, particularly constant throat and sinus infections. A teaspoon of Manuka honey a day seemed to help, as do High strength probiotics, over 10 billion. Might be placebo effect but good to give it a go. I think the worst thing for the immune system for me though is chronic stress and lack of sleep. Could this be a problem for you?

Hand, Foot and Mouth?

Sandysmam well I do have a seven month old, but this is the first time since he was born that I’ve had this. Plus I’ve always been a bad sleeper. I have a very oversensitive bladder, and go to the toilet multiple times during the night. In fact I often think that I’m at least half awake more than I am asleep during the night. I don’t remember when I last thought ‘gosh I can’t believe it’s morning already!’.

Moose - I did wonder that, but there is no rash on my hands and feet. Plus this happens every time I get a cold virus. I know you can get HFM multiple times, but if that were happening to me, presumably that would still be because of an underlying immunity problem.

Could it be herpes outbreaks? They often break out at times of physical and emotional stress Some aciclovir could help it. Chat to your GP

Oops re read your post re herpes. I'll go back to sleep.

Have you tried anti histamines?

I haven’t tried antihistamines to be fair. Maybe I will today.

Re the mouth ulcers, I get outbreaks of these when I'm stressed. My dentist suggested I take folic acid when they start, and it works a treat.

I was also thinking about it the sore throat being due to an allergy. I have multiple allergies (dust, dust mites, tree pollen and fungal spores are just a few of them) and get a really sore throat when I react to something.

DH takes methotrexate (low dose) and because of the hammering on his immune system has to take follic acid so that's a good shout! Not sure what strength though.

Have you had all your vitamin levels tested??

Have you tried manuka honey? Hit drink with orange perhaps, see if they helps - alongside medication of course

I’ve had HFM numerous times. I have massive skin issues. I’m currently into the eighth week since I had cellulitis on my face and I’m still not healed. No underlying immune issues. It’s not just you. Big hugs. Oh, get a swap for strep throat and staph throat and ask for swans for MSSA PVL (Pantone valentine leucocidin)

Have they tested you for Coeliacs? Mouth ulcers, skin rash that blisters, Molluscum, and lots of other weird symptons. Not everyone has diarrheoa.

Your symptoms sounded familiar to me I remembered years ago I had similar when I got Stephens-Johnson Syndrome. Mine was severe and triggered by penicillin but there is a related condition often triggered by infection called Erythema Multiforme. Has anyone mentioned/tested you for that?
www.nhs.uk/conditions/erythema-multiforme/

Have you ever been referred to a dermatologist?

sounds like fibromyalgia people dont realise how many symptoms you can get

Thanks for all of your comments and suggestions. I’ve been to see the GP, and she said that because I have an autoimmune condition, my body reacts this way to a cold virus because my immune system is otherwise occupied. It lets in opportunistic infections because it’s under attack. I’ve heard this theory before but the liver specialists don’t seem convinced. The GP I saw has a particular interest in dermatology. She has prescribed some mouthwash for the sore throat and some steroid tablets for the ulcers. She said the pain in my feet and hands is probably reactive arthritis and that will calm down when the virus goes.

So there we go. I think I need to just accept that this is the way my body reacts to viruses now, and try to do what is within my power to maximise the efficiency of my immune system. In the meanwhile I am miserable as sin with this horrifically sore throat, and dread tomorrow when DH will be back at work and I will have to look after the baby all day

Hmm the pain in hands and feet could be bit D deficiency so I would get tested for that.

I hope you get better quickly I would also google quinsy Just in case it develops in that.

Eosinophilic oesophagitis: an insidious but treatable cause of sore throat

Copied that from a clinical paper, for some reason the link wont post. Google EOS. Its an allergic condition that triggers in skin cells and surface cells inside your body (throat, stomach lining etc). Difficult to diagnose unless you see a specialist. Would definitely flare if you have a cold virus, my DS regular allergies always flare when he has a cold.

(I'm not a doctor)

Behcet's disease?

www.nhs.uk/conditions/behcets-disease/symptoms/

That's really interesting. I have a couple of autoimmune disorders and have definitely noticed that now when I get a simple cold, I end up with further infections (usually chest). It takes me weeks to get over something simple instead of a few days like it used to be.
I had a massively sore throat last week (now have a chest infection) and got some meds' from the chemist that were really good - difflam throat spray and tyrocets lozenges.

Sadly I think for some people with wonky immune systems it's often the case that they will have a number of autoimmune conditions that all flare up semi-independently of each other.

My DP has coeliac disease, psoriasis, ulcerative colitis and a funny dry eye thing (all AI conditions) as well as numerous allergies. Not sticking to a gluten free diet triggers the psoriasis, stress usually triggers the colitis etc etc.

No advice really that others haven't already offered, just empathy

I second Behçet’s disease. I have a friend with it and what you are describing sounds very similar.

Have you tried taking CBD? Just Google it.

I should say, CBD oil.