Has anyone experience of chemical sensitivity - LUPUS UK

LUPUS UK

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Has anyone experience of chemical sensitivity

field profile image
15 Replies

Hi everyone,

I am wondering if any one has experience chemical insensitivity.

My chemical sensitivity is off the Richter scale. I cant tolerate anything chemical including house hold products, voc's, anything chemical and medications. These substances make me very ill even in the smallest amounts. My life is blighted by this.

Has anyone experienced this and have they found anything that has helped. I can't live with this anymore its really distressing.

I appreciate any advice i can get.

15 Replies
Hamptons profile image
Hamptons

I have always been sensitive to chemicals, even their smells. I have just had to use trial and error. I avoid anything with strong smells. I use fairy products and things that’s an sensitive.

Sorry not much help

field profile image
field in reply to Hamptons

Thank u for your Hamptons.

Living with this is really hard for me, as these substances makes me very ill and really restrict my life.

I really appreciate that u took the time to reply.

Thanks

MEGS53 profile image
MEGS53

Yes, I get this too and it's very unpleasant. Any strong perfume/cleaning agent type smell seems to cause it. I think it's the route cause of my chronic sinusitis, for which I use a daily nasal spray (Mometasone). I had an allergy test panel done some years ago (don't think this included perfumes etc) which showed strong positivity for mould (hence problems when gardening) and house mites (we've got hard flooring now, but no improvement I can see).

I also feel unwell when I come into contact with these things, plus headaches and the usual runny nose/sometimes eyes and post nasal drip (yukky!). You have my sympathy, but sorry I can't be of more help.

Cann profile image
Cann

Yes, I am like this, too, I think many of us are - I just try to keep things as natural and basic as possible - a difficult life, but little choice, unfortunately. Keep positive and research all you can to help yourself, that is what I do and protect yourself. I am electro-sensitive, too, and don't use a mobile just a wired computer for safer technology - EMFs and RFR are pollutants, too.

Minnskimoo profile image
Minnskimoo

Hi field.

Totally feel for you right now.

I too suffer something chronic. It's an absolute nightmare to be honest. I have sinus problems - and ear problems too (seems it is connected to my cause). I have been informed it is because of a deviated setpum, eustachian tube dysfunction, allergies, post-nasal drip and so it goes . I use Mometasone Furoate nasal spray, my nose closes off when anywhere near fragrances. I am like the 'canary in the coal mine'. I am able to smell aromas from quite a distance . The detergent isle in a supermarket is a nightmare (although I havent had to negotiate one of those for some time) as I am left gasping . I have asthma so that doesnt help the cause either. I also take Fexofenadine antihistamines and sometimes use my grandaughters Piriton junior liquid-at my peril. Absolutely knocks me out.

I use all non- perfumed Simple products and Surcare non perfumed laundry detergent. The only problem with that being, when visiting anywhere else, everyone smells exceptionally strong of fabric conditioner and highly scented washing liquids. Fragrances are everywhere and extremenly difficut to avoid. And, at the moment, not being exposed to anything much because of the virus seems to have heightend the sensitivity even further.

There are a few theories as to what the possible cause could be - some not so favourable.

I do believe having AD perhaps predisposes some due to the nature of the disease -susceptibilty to allergies, lowered immunity, inflammation.

You are most certainly not alone and I appreciate how it can affect the abiltiy to socalise and live as normally as we would wish to.

I would dearly love to wave a magic wand some days. I find it makes me anxious when exposed and dislike that feeling of ' impending doom'. Is this how you feel? Some days it's like I have pregnancy sickness (and no, I am far too old) . It seemed to appear from nowehere and has become a very unwelcome visitor.

Hoping there may be a few more 'posters' with some help and advice as to how best manage and improve the situation.

x

mcs-aware.org

greenscents.co.uk/multiple-...

MEGS53 profile image
MEGS53 in reply to Minnskimoo

Yes, I also relate to the ear/eustachian tube problems. I've had my ear drums burst on occasions when things got too yukky in my sinuses. Also very dry itchy ear canals, causing outer ear infections (but that might be Sjogren's, I suspect).

It's an awful condition and one that's not really recognised by rheumys, I think.

Minnskimoo profile image
Minnskimoo in reply to MEGS53

Hi MEGS53

Interesting re the Sjögren’s - I am waiting for bloods to be done at the oral medicine dept as that is a possible consideration for some of the problems I have been experiencing (for some time now ) along with Lupus and RA! Joyous! I have a diagnosis of Behçet’s! 🙄

It doesn’t seem to be acknowledged by some Gp’s. I was told by one (as he sat tapping his pen on the desk and rocking on his chair) ‘Yeh, I have a similar problem but, it’s one of those things you just have to live with!’ Very helpful. Or perhaps not!

It is awful. 😏

field profile image
field in reply to Minnskimoo

Thank u for your reply Minnskimoo,

Yes that is exactly how it is with me.

My body over reacts so so badly, it makes being around others very difficult.

I have not tried antihistamine, i may try and see if they help.

Thanks

MEGS53 profile image
MEGS53

It is indeed awful and definitely not really recognised as being awful, if you know what I mean! I'm prescribed steroid drops for my ears, as well as Mometasone nasal spray daily. These do help, a bit.

Wow, you have a whole host of AI conditions to deal with! Sending huge gentle cyber hugs your way, xxx

Minnskimoo profile image
Minnskimoo in reply to MEGS53

I truly do know exactly what you mean . Horrible it is! And thank you - a cyber hug is very much appreciated!💐

I only have a Behcets diagnosis at present but because of other symptoms the others are possible considerations.

Wishing you a restful evening . 🤗x x

field profile image
field

I have spoken to my rhumy about this and he is referring me to immunology dpt, i don't know how they can help?

I have lung disease as well as lupus, fibromyalgia, diabetes, hyperparathyroidism and other issues. I can only take certain brands of medication otherwise I become quiet ill. When exposed to these substances they cause pain and inflammation in my lungs as well as heart palpitations and extreme fatigue. Everything i use has to be natural, including clothing. It is such a nightmare.

Its good to know there are others who understand.

Thanks everyone for your responses.

I appreciate so much.

MEGS53 profile image
MEGS53 in reply to field

I think a referral to an Immunologist is a sensible move as they may be able to direct you to the main causal agents of your allergies. You really are going through it and I wish you all the best on your journey. Gentle hugs, xxx

field profile image
field in reply to MEGS53

Thank you for your reply.

Xx

MEGS53 profile image
MEGS53 in reply to field

You're very welcome. I hope Immunology can come up with some answers, please keep us updated. Good luck!

bookish profile image
bookish in reply to field

Hi, I only just saw your post and wondered if you had seen immunology yet and if they had been able to help. Hope so. I have chemical reactions too and was searching to see if anyone was reporting issues with lateral flow tests, like me! I have Datis Kharrazian's huge book on brain function (Why Isn't My Brain Working?) which does mention chemical intolerances as either being immune overreaction or autonomic nervous system dysfunction (presumably some have both). I have cut out as many as possible and am trying to improve my ability to process chemicals, plus vagus nerve function, but not sure that it is making a noticeable difference yet. Best wishes

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