ongoing situation

[AlfieJMummy]

Hello everyone. I hope someone may be able to shed some light or give me some advice.

I am 21 years old. I have suffered with recurring kidney infections, strep throat, throat and chest infections and bladder infections, bouts of sickness, and bouts of flu like symptoms for about 4 years now. I’ve been in hospital a few times with severe infections, but they never know what’s causing it. I’ve seen a LOT of professionals, and they all just put it down to anxiety, or my period🙄

the main problem is the pain. when this is happening my skin hurts to be gently touched, everything aches, i get a migraine and my throat hurts. my back and shoulders kill and i can’t even tie my hair back.

The odd thing is, i got unexpectedly pregnant, and my son is now 8 months old. I didn’t have any episodes of this during pregnancy, and today it hit me for the first time since.

doctors again are useless.

thank you:)

First of all the sore skin is called Allodynia. It’s horrible I know. I get it when I’m unwell at the very beginning

I also leave autoimmune issues - do you? Just asking because during pregnancy my psoriasis disappeared and it came back 8-10 months after birth. Doc told me that the
Immune system was naturally slightly suppressed during pregnancy to prevent the body rejecting the baby.

I don't know much about this but mast cell activation syndrome come to mind as something that has widespread effects - worth googling, anyway. Hope you find an answer - don't give up with asking doctors for help.

Have they done an CRP as well as ESR in your blood tests?

The reason I'm asking is that this is an inflammatory marker - and the immune system naturally 'quietens down' during pregnancy, only to flare back up again some time after childbirth.

If you have a useful partner, much as it's shit to support sexism in medicine, if he could go to the appointments with you, doctors do tend to be a little less dismissive towards patients when there's a man there saying 'no, it isn't just her period or in her head, I've seen it'. And it is absolutely ridiculous for doctors to say that severe infections that require hospital admission are psychological.

Think of any other symptoms - such as changes in the texture of your skin or swollen joints - as sometimes autoimmune stuff can show up in the form of disproportionate reactions to infection and sensations before classic skin changes or other symptoms appear. Is there a history of celiac disease, psoriasis, rheumatoid arthritis or lupus in your family? Do you feel worse when eating lots of wheat, dairy or other things? Are there random relatives who had 'some sort of illness' or had cardiac issues at an early age (not to scare you, but untreated autoimmune disease for decades can increase the likelihood)? A female relative with recurrent miscarriages, including late ones? Type 1 diabetes?

At an appointment, take a list of occurrences, any possible relative's information, any possible triggers, put it all into background and a chronological list of what has happened to you. Say that you would like to be referred specifically to look into the possibility of autoimmune disease because the one time you've had remission from this has been during pregnancy when the immune system is naturally depressed to allow the fetus to survive.

This might not be an instant thing, but autoimmune diseases, if they are what you have, take time to be diagnosed - some can be found in a simple blood test, some are only found by excluding other possible causes - and God, how often they are dismissed in women in favour of it all being in the mind/due to hormones.