Hello and Help!

[Anicca]

Hi, I'm cheating here, as I'm from Australia, but the Lupus group hasn't minded so I hope you'll let me sneak a post in

I hope everyone is doing as well as possible today.

To cut a loooong story short, my kids and myself are very hypermobile (though haven't had a hEDS diagnosis), and I have SLE lupus and chronic hemiplegic migraines. Hubby is my full-time carer.

I also have severe reactions to chemicals (beyond the usual reactions to smells that come along with migraines). Now, I don't always know what these are, although treated treated timber is a mighty one. My son's hypermobile-specialist physio has talked to us about MCAS, as he has other aspects of dysautonomia (and, let's face it, so do I).

A couple of days ago husband comes in from a day of gardening (not a usual thing for him!) and sets off all the usual symptoms: burning mouth and eyes, tightening chest, huge weakness, headache and basically like my heart is pounding but there's no blood to pound.

But neither of us can figure out what it was. He was pruning, not using materials brought in from elsewhere. TBH, two days later, I still can't be too close to him - it's as if he's brought something in with him that's setting me off. The only thing I can think of is that the neighbours had some slashing done - not spraying, just cutting down undergrowth (Australian bushfire season approaching...).

What are people's outdoor triggers? If anyone could give me a clue I'd be so grateful...

Thank you so much.

[Woodpecker2021]

Hello, welcome to the group. Sorry to read you are having a challenging time but good that you have support at home. Plants and the Australian environment are obviously very different to the UK. Although I am highly reactive to smells, it's mainly synthetic. Strong smelling plants like hyacinth, lily, privet flowers, rapeseed are a big problem but most have been manipulated by humans so smell stronger than they should. The only thing that works for me is avoidance. I take ketotifen daily to subdue the mast cell response and then take a tablet if I get triggered by a smell. I wonder if boil washing the clothes your husband wore (another lady I know does that) and multiple showers to cleanse the skin, perhaps with a light amount of tea tree. How are you with Lemon Myrtle or tea tree oil? I use it to dampen down a smell as those smells don't bother me. I use diluted tea tree as anti bac as I can't tolerate standard anti bac. Steam cleaning is used for lots of allergies. I wonder if that's feasible for you to cleanse the house to help with this recent exposure. I hope you find a solution. Hopefully someone on this forum may have a similar experience and possible suggestions.