At a loss... autoimmune disorder? Intolerance? Help!

[Elsajk]

Hello MN

I'm a bit desperate and seeking any experience/opinions on something that is driving me mad but also extremely debilitating.
And as a side note I am going to see my GP asap.
I've been struggling for about 10 years with the symptoms and never had proper help.
I have severe endometriosis which has always been the focus.

So these are my symptoms. I get an 'attack' say one every 4/5 weeks. Have absolutely no indication what causes it...

*Suddenly feel like I'm coming down with the flu

• Sudden tiredness to the point I have to lay down and can sleep 12 plus hours and still need sleep *Brain fog. I cannot hold a sentence, drive or think straight
• Sinuses flare up and very painful all over the face and always have a severe headache or migraine with it
• Horrendous stomach pains and severe diarrhea for 24/48 hours. Basically like terrible food poisoning
• Tight chest
• I also get a rash on the right side of my face and have had something called angular cellulitis of the mouth which I couldn't get rid off so was given steroids
• And mouth ulcers.
• Extreme thirst
• Become sweaty, clamy and low fever

I am 38. Healthy weight, don't smoke, hardly drink

It comes on suddenly and stops me in my tracks. I am unable to work, leave the house do normal things when I get an attack.
After about 2 days i can feel it lifting, and then I'm back to normal just have a bit of a headache but managable.

Can anyone shed light on what on earth it could be?!

Thanks so much.

Oh and I sneeze alot when I get an attack

Chronic Lyme, CFS/ME (often triggered by viral infection or stress event so might be relevant if something occurred around 10 years ago, for me the trigger was Epstein Barr virus), MCAS. Endometriosis can also trigger imbalances in the immune system as it is an inflammatory condition, it can co-exist with autoimmune conditions. Are these events triggered by your menstrual cycle? The menstrual cycle is a cycle of inflammation so you can get flaring of symptoms as the hormones change.

helloclue.com/articles/cycle-a-z/the-immune-system-and-the-menstrual-cycle#:~:text=During%20the%20follicular%20phase%20of,response%20(1%2C%204).

Hello. Sorry to hear you have this. Like previous poster I suggest Mcas and pots/autonomic dysfunction.
Mcas would cause allergic type symptoms including sneezing. Pots and autonomic dysfunction could cause stomach pain, thirst, tight chest, headaches/brain fog.

An inflammatory condition such as endometriosis as mentioned by PP would cause exhaustion due to inflammation.

does stress precede any of these episodes?

might it be triggered by diet? could you keep a food diary?

allergy?

does sound as though it could be linked with part of your menstrual cycle due to the timing. Hormonal balance or something. Might be worth seeing if there's a natural remedy that helps hormonal balance (evening primrose oil or similar) and see if that helps.

I had most of these symptoms for a long time. It was b12, iron, folate & vitamin D deficiency. Maybe get your levels checked.

Hello thanks so much for the responses.
My cycle seems to have no bearing on when I get an attack. I used to attribute my flare ups to ovulation but that doesn't seem to be the case. And no bearing whatsoever on when I have my period. The inflammation I experience with endo is a lot different.

I've never heard of Macs but will look into it.

I have a few of those symptoms and I have Lupus.

Sorry you’ve been experiencing these symptoms, OP. I have ulcerative colitis and this does sound quite auto-immune like to me. I also experience angular chillitis and mouth ulcers when I have a flare. It may be caused when the gut is inflamed and not absorbing nutrients properly. Have you ever been tested for coeliac disease or tried a gluten elimination diet? I had a friend with very similar symptoms to yours and it turned out that’s what she had. I hope your gp is helpful and you get answers soon.

Thank you so much for your replies ❤️ I've been tested for coeliac as it runs in the family however I would like to be tested again just incase.
Weirdly my diet seems to have no bearing on when I get an attack, although I need to do an elimination diet to really be sure.

Am going to call my GP this week. I am still absolutely exhausted from having an attack since Thursday.