CHRONIC ILLNESS - Anyone really sensitive to (fire) smoke - not asthmatic

[SingToTheSky]

(Long boring post sorry)

Always had a tendency to a “dodgy chest” - even as a child I never had a normal head cold, it would always result in rattly chest, coughing up crap etc. My mum and grandma are the same but none of us are asthmatic (grandma’s father was though, and died from an attack).

I was actually tested for asthma once though when I was unwell and went on a nebuliser briefly. But when I did the peak flow test thing the doctor was shocked because my result was actually worse after using an inhaler

Anyway I’m still like that at 34 and my chronic illness (ME and fibro) started after a particularly bad chest infection. I’d been ill for a while but got suddenly worse after I was around smoke. We’d been at a castle fayre thing (so I must have been almost better) and they were demonstrating some process that released a lot of weird smelling smoke. After that when I coughed it was like I could taste it in my lungs if that makes sense?!

9 years later and I’ve been a bit rattly for a while. But it’s got significantly worse after going to forest school with DS and being by a campfire. Nobody else there seems affected by it so I don’t think it’s a normal reaction to smoke. And it’s not just the effect it has on my breathing - basically being around it causes a flare up of pain/fatigue. I’m gutted as it is one of the few social things I can do now but it’s not worth the resulting setback :(

Cigarette smoke doesn’t seem to have the same effect, not sure if that’s just because there’s less of it if someone walks past etc.

Anyone else have similar issues without being asthmatic? And is there anything I can do (other than avoiding campfires obviously...)? I do take high strength vitamin D which I thought was helping until recently.

It might be worth being investigated again.

I have non allergic asthma (so not pollen and animals, it's cold air, viruses and fumes especially smoke.)

When younger I seemed to cope, just about, coughs would linger. After 39 they'd start to become pneumonia and I lived in a state of chronic fatigue. It turned out to be asthma. Don't wheeze, only once had a wheezy moment, but I cough and cough and cough.

I normalised it for years.

It was when the boiler was installed and I coughed for 12 hours afterwards and then kept having to lie down the next day when no one else in the house was affected, that I started to twig it really wasn't normal.

On steroid inhalers I'm mostly ok and don't react as extremely. Sometimes it catches in my throat but I'm not up all night coughing.

I also had a lot of cfs symptoms. That improved a lot after starting inhalers.

Wow thank you warrior that’s really interesting. I’ve never even really looked into asthma before as they just said at the time I couldn’t possibly be, because of the peak flow being worse. But maybe it should have been followed up or retested or something.

I’m not sure how to approach it with the GP. I think if I went at the moment they’d just listen to my chest and say it’s not low enough to worry about (as in where the rattling is). In the past I’ve been when it’s got bad after a cold and if it’s low in my chest they usually give antibiotics but if it’s higher they’d say it was “drip” from the cold. But this time I haven’t had a cold and it’s just been rattly for weeks.

Before covid I was using the steam room regularly after a short swim - my respiratory health was so much better.

It may not be, who knows, but it might be worth looking at what's going on.

Certainly my peak flow got better after ventolin; you do need to wait a good 10-15 mins for full effect.

Also, coughing eased on oral steroids only to return when I stopped which prompted a trial on a steroid inhaler. My peak flow (when not on the steroids) was lower than normal range, but only about 40 points.

I'd always used steam rooms, after one particular cough a steam room actually triggered more inflammation the next day/ week (coughing and a lot of fluid, also only time I wheezed) which is when I ended up seeing the Gp.

I had a lot of advice from asthma U.K. and a friend who's a nurse and asthma trained. At some practices the GPS aren't as practically knowledgeable as it's the nurses or pharmacists that manage the asthma. Asthma is usually diagnosed when younger too, though adult onset can happen.

I don't think I had adult onset, I actually think I'd always been mildly so (always hated smoke) but I'd coped as I didn't react to common triggers, didn't wheeze and always swam and played a wind instrument (both of which help lung function.) I'm prone to croup though, and still as an adult.

I'd definitely call asthma U.K. first. They're amazing.

Hi, have you considered mast cell activation syndrome? Mast cells are involved in allergy response and can be set off by smoke and other things like perfumes / shampoo but also a lot of food types histamine liberators such as gluten, nightshade fruits / citrus / beer / wine, seafood.

I get this response to smoke sometimes too.
It is linked to EDS which is a connective tissue disorder with faulty collagen causing issues eg dislocations, body pain, random bruising slow healing etc (also POTS/ autonomic dysfunction (basically wiring doesn’t work properly causing heart rate to go up fast, short of breath)- seem to come in threes)

I was diagnosed with asthma age 9 but my specialist thinks it could have been MCAs and the disordered breathing seen in POTS.

Best of luck x

Oh yes, me! I am same as you OP. I am much worse after suspected covid March 2020 too so any smoke, including cigarettes and woodsmoke, messes my lungs up.

Interestingly, I am also hypermobile...

Funny, I have hypermobility too, but definitely asthma. Brown and now a dual inhaler has made a huge difference.

This is so interesting about the other conditions. Namechange I actually do have POTS too - pretty mild luckily (I don’t faint).

I’m not obviously hypermobile in most joints but friends with EDS have mentioned that some people call themselves “stiff zebras” (as zebras is the name a lot of EDS sufferers use for themselves) - I’m not really sure about it though.

I have heard of MCAS and I’ve never considered it for myself but I reckon my mum might have it, she seems to react to a lot.

To be fair most of the time I’m ok (in the breathing sense - it’s “just” the pain/fatigue etc 🤣) so I’m unsure how to approach this with a GP. But I will definitely look up Asthma U.K.

Oh and I’m also autistic/ADHD which has a huge overlap with EDS/fibro etc.

I’ve never bothered trying to get the possible EDS investigated though as even friends with severe versions have a hard time with professionals. So I just try and manage symptoms. My knees sublux at night a lot.

My 3yo keeps waking up saying her knees hurt too

Hi @SingToTheSky I’m similar in that I think I’m a stiff zebra too- don’t score highly on the Beighton scale but stretching skin, hard to heal, fragile and smooth skin and very few wrinkles (one good thing 😂) - I haven’t looked into it much either, may do in future if it bothers me more with pain and fatigue, not sure how it will get worse as i get older.
My 9 year old complains her knees hurt after a busy day.
The fire smoke thing is funny as I can remember going back a long time (20plus years) having reactions to smoke at festivals etc and feeling very unwell after a night sitting round a campfire- it would bring on a migraine/sickness and vomiting sometimes. I always thought I was just over tired or drank/eaten something bad, but I think it’s a thing!
Anyway I was diagnosed Mcas by a consultant who specialises in bladder Eds issues but he asked me about a range of foods and most of them i knew I reacted to.
Good luck xox

Also my dd is neurodiverse too- seems to have big overlap to EDS xx

It’s bizarre isn’t it how it can all be related. My DS is home educated and a lot of the other kids are autistic like him, most of my friends are too and so many of them have problems with EDS and other conditions.

@SingToTheSky I know what you mean. The more I dig into the linkages it’s incredible. I also feel as a group of people with loads health conditions with EDS at the root plus the challenges of parenting neurodiverse children, probably neurodiverse ourselves, it’s a very big challenge and can be very isolating.

I had an email from asthma U.K. about research into blood tests to diagnose asthma. Not there yet OP but it would help others like you in the future.