Weird smell

[Buildashed]

Hi, does any one have a weird smell but no one else in the house can smell anything, could it be a side effect of fibromyalgia?

[desquinn Partner Volunteer FMAUK Trustee]

Would speak to your GP but not likely to be a fibro thing and have you had a covid test?

[Buildashed in reply to desquinn]

Hi, no I haven’t had a covid test as I don’t go out anywhere. I suppose I should make appointment with GP it’s just every time I get a new symptom I get fed up of going to the Doctor to be told it’s fibromyalgia. I have had it before about a year ago, but this time it’s worse, I don’t have it when I get up but as the day goes on it comes and goes, I manage to cope when I have a pain flare up, but this is giving me a headache, and I have ringing in the ears, I just wondered if it was a start of a flare up, I know there are many symptoms for fibromyalgia. Thank you for your help much appreciated

[Painny]

😳😳😳

[Budgielady]

Hi there,My sense of smell is super sensitive and it does my head in.. I often say to hubby what is that stink.. Can you smell it but he often doesn't..

I also have super sensitive taste buds too.. Not sure if it's due to fibro as I have had both issues for years.. Had fibro since I was in early 20s and am now 49 so can't recall if I have always had these issues.

[Buildashed in reply to Budgielady]

Hi, thank you, I had it a few years ago I thought I had a gas leak, this time it’s like burning, smoke. It makes me feel better to know others get it as well. Thank you for your reply

[Curlyfries]

I had phantoms smells for 9 months kept smelling cigarettes was reffered to a ent and had a mri said nothing was causing it then now a year and a half later been diagnosed with fibromliga i do often wonder if it was connected

[Blueberry91 in reply to Curlyfries]

Wow, you just described my story exactly! I had phantom smells (mostly cigarette smell) for some time and had an mri which they couldn't find a reason and then was diagnosed with fibromyalgia about a year and a half later. I still get the smells now but not so bad (might just have gotten used to it by now)!

[Buildashed in reply to Blueberry91]

Hi, oh thank you for that, it helps so much to know your not alone. I am so pleased I have found this site, it makes such a difference to speak to people that understand what your going through. Thanks again

[thelorax in reply to Blueberry91]

Hi , this is me ! Started 2011 , I went for an MRI and epilepsy screen and all ok .. they said it was stress but I still get it.. I have Behcets aswell as fibro and wonder whether it’s one or the other ! It’s so upsetting as I smell it a lot of the time ... I’ve accused my kids of smoking in the past, my husband of somehow rigging the car , even went round to my neighbours insisting their smoking is seeping through into my house - they told me they didn’t smoke ! Sad times I don’t mention it now .. I am always relieved to see a smoker by me xx

[Buildashed in reply to thelorax]

Hi theLorax it’s awful isn’t it, as if we don’t have enough to put up with coping with everything else. I just thank the lord I have found this site. I found a support group in my area, I was so happy I could talk to someone else that understood me, but then it closed due to Covid. I have to say I have spoke to more people on here so my thanks go out to each and everyone. Some days I feel sorry for myself and cry for nothing. Now I read more people are worse off than me, and realise I have to just get on with it. I’m going to take a tip from you and not mention it again as I must be driving my hubby mad lol. Thank you xx

[Buildashed in reply to Curlyfries]

Hi. Thank you for replying, it does make you wonder doesn’t it, it’s not that bad just drives me mad, I think I’m going nuts lol. When I get up it’s not there then as the day goes on it gets worse. I do get silent migraine flashing lights, so I’m thinking it’s something to do with that. Many thanks!

[Niao in reply to Buildashed]

I too get silent auras, have Chronic Migraines, sometimes with headache. Nausea etc but other times just the aura. Many auras, over 15 a month often and many many other visual disturbances, white noise etc.I too find at the times my migraines are frequent , the heightening if sensitivities to smells, lights, tastes etc is a lot worse!

[Buildashed in reply to Niao]

Thank you for this, sometimes I feel I’m going crazy, I don’t want sympathy, just understanding, when I tell friends and family they look at me blank, then I get paranoid that they think I always have something going on, which I have, I never get two days the same. I always get flashing lights zigzags with my migraine and they are more often, I really do hope this smell is part of it, but as I have said I have been using a lot more perfume and household air fresheners recently. But not any more I suppose we all learn by mistakes. Thank you again.

[Niao in reply to Buildashed]

You're very welcome! Unfortunately some people, a lot, will just never get what you're going through, or bother to even try! Sadly, with Fibro you are likely to have a constant myriad of very bizarre, sometimes very unpleasant , things that you'll have to endure. You need and deserve understanding from those who care about you and if some remain unable/unwilling to give this, are these really friends worth having? Do not waste your precious little energy on anyone or thing that continues to drain your resources, gives little in return or makes you constantly question yourself!

Sorry to rant but peoples' lack of understanding or support to those with chronic conditions is always a sore topic for me, and one covered so often on these forums!

[Buildashed in reply to Niao]

Thank you Niao, for those kind wise words, I will definitely take them on board. I do question myself sometimes, I have a very understanding husband and son, and to be honest they are the ones that matter. I have been suffering with fibro for 4 years, as you know the pain is unbearable I just want to lock myself away when I have a flare, but it’s when I get all these weird peculiar other things, I panick and think omg have they missed something. I have been reading other stories and I have to say it has helped me realise fibromyalgia is a vicious circle it’s not only widespread pain but lots of other things. Thank you again for taking the time to reply

[Midori]

Don't know, but I find my nose has become more sensitive to strange odours.

[Buildashed in reply to Midori]

Thank you Midora, I thought I had sent you a reply but can’t find it. I don’t want to repeat myself in case I have sent it. It was a long one!

[Niao in reply to Buildashed]

I had that problem yesterday, then realised , or thought, I hadn't always been pressing the reply! Also my Internet had been playing up. Now wondering if it was some glitch on site?

[Buildashed in reply to Niao]

Hi Niao, yes my internet has been very slow, and because it’s my first time on this site, and brain fog! I probably didn’t press send, and now I’ve forgot my conversation. Thank you for replying. I get up in the morning nothing then as the day goes on it comes and goes, I hope it hurries up and does one, weathers not helping so cold and wet I can’t even get in the garden. I’m sure fresh air would help.

[Midori in reply to Buildashed]

I think it probably got lost; please send it again if you wish.

Cheers, Midori

[Niao]

Yes!Super heightened sense of smell. I drive everyone mad!

[JayCeon]

I've often read that sensory hypersensitivity (smells, tastes, lights, sounds) are part of fibro for some (books & web). It's also a "Hypersensitive Personality/Highly Sensitive Person"-thing.

[Niao in reply to JayCeon]

Yep, would agree. I'm hyper everything!!

[Buildashed in reply to JayCeon]

Hi, thank you so much, I am not so anxious about it today, thinking it was only me! Sent me crazy.I have a feeling I have overloaded my senses, I have filled the house with plug in air fresheners (took them all out now) also been wearing a lot of perfume, I do suffer with silent migraine where I have flashing lights but this is weird. I wondered if it was the start of a flare up. I suffer pain every day but when a flare comes I have to take to my bed. I really appreciate your reply. I am going to look on the net now. Many thanks

[Midori in reply to Buildashed]

I rarely use perfumed products; they give me problems. I tend to use things like White vinegar, also Washing soda for most of my cleaning, as the smells dissipate quickly. I really hate the chemical perfumes in cleaning products, and I won't use those highly perfumed room deodorants either.

[Niao in reply to Midori]

Yes, me too. Also find perfumes to be trigger for migraines, well one of them anyway!

[Buildashed in reply to Midori]

Thank you so much for the tips and advise it really makes sense. I’m getting rid of anything with chemicals in. Anything that gives a better quality of life.

[Curlyfries in reply to Buildashed]

Omg that is strange as i mentioned months ago about my phantom smoke smell i also get flashes in my side of my eyes sometimes like a little bead of light moving to the top and disappearing

[denny_the_wench]

Yes I have burning smells occasionally - usually blame hubby leaving the grill pan on but it's never that. I often find it when changing from one atmosphere to another - e.g. the last time was when hubby took me to the hospital for my bloods and I hadn't been out of the house for 10 days. I asked him in the car what was the burning smell as I thought something was on fire it was that strong! Weirdly enough when the cat came in last night I could smell bonfire/smoke in his cold fur! 🐈

[Niao in reply to denny_the_wench]

People often smell of grass/leaves to me when they come in and I've not been out!

[JayCeon in reply to Niao]

Well grass and leaves is well enough, I think - but as kids when my sister came in she smelled/smelt like a wet dog to me, something about her hair... Hope I didn't tell her that (too much), cos I really care for her and she's just as sensitive as I am...

[Niao in reply to JayCeon]

That makes me laugh! I also find many things/people to have the 'wet dog' smell! Also, the'compost bin'smell, also hope I haven't told anyone that, other than my long suffering partner who's only too used to me! Bizarrely, quite often, glasses/cups etc smell like wet dog to me. In fact, it was probably only our actual wet dog that didn't!!! Sadly she has passed.

[Mijmijkey74 in reply to Niao]

I don't have fibro, but do have migraines. And as for fibro I say I don't have it as never been tested, but convinced I either have fibro or something else which completely saps energy. And what you say about leaves and grass when people come in and you haven't been out, I also smell those on people too, but isn't that just the smell of outdoors? And that they have been ouside and we haven't? I also smell unidentifiable smells nobody else can smell. Some of which are overwhelming and make me feel incredibly unwell to the point I have to immediately lie down, keep very still and sleep. Fragrances of products and fruity smells make me nauseous and also feel very unwell. What l use to clean things with is limited to almond, coconut, aloe vera, lemon and eucalyptus watered down, but lemon can be problematic too. Can't use any antibacterial sprays or furniture polishes, no bleach or pine smelling floor cleaners or disinfectants with strong smells. No tin spray air fresheners as can't limit amount same as with pump action of a fragrance I'm able to tolerate. Often smell gas and burning rubber, paper, plastic. I also smell sick & poo at times and all my body feels heavy, l ache, throb and feel weary all over, completely exhausted. My bones feel like they are going to snap sometimes and my upper limbs threaten to come out of there sockets, but never have completely so far always manage to stop that by not moving in the direction I was doing, but very painful. Happens with my wrists, fingers, toes, knees, neck, pelvis. Doesn't help I'm also double jointed but not severely so. Neither does it help anymore that I was in a coma in 2018 and incured huge muscle wastage and weakness all over. The coma has ravaged, savaged and aged my body horribly. Can't get my muscle mass back and legs give way. Aside from muscle wastage everything else was present prior to my coma, but oddly I'm able to cycle. Though currently less as brittle asthma flaring up. As I type now I'm in not agony but pain and very aware of muscles aching and not aching from cycling. Also certain food smells and tastes make me very unwell. I'm exhausted now now. Need to sleep.

[Niao in reply to Mijmijkey74]

Sounds like you have quite enough to contend with already, with or without fibro! I particularly find both citrus based or pine smells hard to endure and one of my many triggers of migraines, and feel very unwell when exposed to some smells and tastes.

I'm certainly not double jointed but was told by a Rheumatologist that did have a degree of hyoermobility in some joints and that this could result in pains due to the unnatural movement if ligaments and tendons, and on knock on affect on others. Makes sense.

Your poor body has been through some massive trauma in the past by the sounds of things and I'm not surprised you're exhausted!

[Buildashed]

It’s weird isn’t it? Funny enough I haven’t been out in ages so it could be that. Thank you for your reply. I do feel better knowing I’m not on my own, if you know what I mean.

[Dodo71]

Hi Buildashed.I often get an odd smell, that no one else can smell. It's a horrible, slight burning smell. A bit like a really bad cigar. I had fibromyalgia for years and I've never been sure if it was related or not. I use peppermint oil under my nose, which helps a bit. What does you're smell like?

[Buildashed in reply to Dodo71]

Hi Dodo, it’s a very strong smell that comes and goes lasts for seconds, it’s very hard to explain, I would say something burning but very strong, I had it a few years ago I was convinced we had a gas leak, had the gas man in no leak. I have had it since Sunday, it’s driving me mad, I suppose the longer I’m stressing about it the longer it will last. I have got some peppermint oil so I’m going to try it now. Thank you so much for your reply.

[J2302]

I get it all the time. I'm so sensitive to certain smells now, taste buds changed and eyes too. I've been told that it's part of the fibromyalgia.You feel like a loon when you're saying to people can't you smell that, it's really strong and they look at you blank 😂 x

[Buildashed in reply to J2302]

Hi, thank you so much for sharing your experience with me. I do think it’s part of fibro, as now I have read others have thus symptom. Really appreciate your feedback

[Hidden]

I have heightened sensitivity, so maybe that's what you have. I can smell things that others can't and I hear things, such as light bulbs, fridges and freezers! It can be quite maddening but you'll get used to it. I've don't use any chemicals in my house anymore. Just an steam cleaner and a sanitiser maker as there's no chemicals. Cuts down on the amount of smells I have to deal with.

[Buildashed in reply to Hidden]

Hi misunderstood, thanks for the reply, I’m not going to use anymore plugins. Thank you for the tip I am going to order a steamer today

[Hidden in reply to Buildashed]

I got my stuff from Thane. Glad to help. Try changing your fabric washing items to non bio. My rule is, if you'd use it on a baby, use it on you! If you wouldn't, don't.

[Buildashed in reply to Hidden]

That’s brilliant advise! Thank you so much

[Niao in reply to Hidden]

Yes!