Multiple Chemical Sensitivity - Fibromyalgia Acti...

Fibromyalgia Action UK

59,421 members66,475 posts

Multiple Chemical Sensitivity

keno25 profile image
54 Replies

I was diagnosed with Multiple Chemical Sensitivity first then found out i had Fibro after reading through my hospital letters. Multiple Chemical Sensitivity is a chronic condition caused by exposure to synthetic, petroleum derived chemicals found in products such as pesticides, perfumes, building materials, carpets, paint, exhaust, cleaning products, tobacco smoke & food additives to name some of my triggers.. The smell of aftershave can take me out & zap me of energy causing me muscle & joint pain, other symptoms i get are headfog, dizziness, abdominal pain, weakness, loss of coordination & rashes to name afew.

Written by
keno25 profile image
keno25
To view profiles and participate in discussions please or .
Read more about...
54 Replies

oh that is very interesting i have never heard of it before love to you diddle x

keno25 profile image
keno25 in reply to

Awareness of MCS is always a good thing Diddle :-)

jazher profile image
jazher

Hi,

I have that too. I cant stand the smell of most perfumes, i always keep to a certain two. I cant stand nail varnishes. Even some soaps and shampoos. It makse me really ill and send my head into like a confusion state. It doesnt ususally take much anyway lol.

Theres loads of things that i have to stay away from because they make me ill. Just thought of another one, air freshners are really bad for me.

hugs, kel xxx

keno25 profile image
keno25 in reply to jazher

I can relate to you Kel.. I use all uncented products & clean with Bi soda & lemon plus fragrance free wet wipes.. There is a good help group for MCS called Planet Thrive. :-)

jazher profile image
jazher in reply to keno25

Thanku, keno.

Dove soap is what i use all the time and cleaning products are a nightmare, i can stand bleach though so thats good lol.

I will look that up ta xxx

keno25 profile image
keno25 in reply to jazher

I can't even use the dove perfume free soap as it stil affects my breathing etc Cleaning chemicals are banned where i live.. I use Simple soap as i don't react to that.. :-)

Are you saying they are the same thing?

keno25 profile image
keno25 in reply to

I think there is a link Brie with MCS & Fibro

I've never heard of that either. I am aware of smells around some which I find very off putting. Also noise, I dont like loud noises. I sometimes cant even bare the tv on.

That must be dreadful for you.

Love & hugs

Jackie

keno25 profile image
keno25 in reply to

I try to live by avoidance of toxic chemicals as much as i can but in todays world it's like stepping out into a mine field.

keno25 profile image
keno25 in reply to keno25

Thanks Jackie :-)

julie51 profile image
julie51

Hi Keno- i've got allergies but have never heard of this, but i will read more about it, caus often wondered if my symptoms have something to do with them, have asked doc about allergies but just fobbed off as usual. I've been taking peritize just to ease my vertigo which seems to be working so far. but no pattern to other aches and pains-take care and thanks for that-love julie51 :) xxx

keno25 profile image
keno25 in reply to julie51

Yes Julie, do some more research into this. If you read some of my comments to other members below it may benefit you.. :-)

sue930 profile image
sue930

l realised some years ago that l had an allergy to foam backed carpets(when the foam gets old and starts to disintegrate) also many perfumes and aftershaves give me either a headache or start off my asthma and l have heard that many household chemicals can cause reations but have not related that to my Fibro until now, certainly gives food for thought.

keno25 profile image
keno25 in reply to sue930

Hey sue, I don't have asthma but i know carpets & cleaning products can start asthma off.. Formaldehyde is the biggest household contaminant its in furniture carpets chipboard soap food & food additives its ubiquitous .. I am on incapacity benefit with this illness, MCS is recognised is the UK as an illness but there are no facilities to treat it..

ToniPR profile image
ToniPR

I have suffered from chemical sensitivity for years and didn't realise that it was related to fibromyalgia until a doctor told me. I cannot use certain hair products as the skin on my face goes red and scaly and I have even even had occasions when my face has swelled up so badly that it looks like I've been beaten up!! My skin is also very sensitive to some clothing - I now buy these Genie bras that another member on this forum recommended and they are great. Loud noises and bright lights also do my head in!

keno25 profile image
keno25 in reply to ToniPR

Hello - I use all uncented products & clean with Bi soda or lemon & perfume free wipes.. i was simple soap to wash with & Surcare from the supermaket for washing pots & clothes.. I wear cotton t shirts alot of the time.. Yes i don't like loud noises or bright lights either, the supermaret lights are very bad for me & i can't stay in there long..

pottyness profile image
pottyness

my Mum has MCS and ME so i am well aware of this. we have been living with it for 15 years. doc says its a family trait as i have FM and ME and my sister has ME. i make soap and i can add any thing i want to it but can also not add anything to it. she tells me that, though she has bought soap that has cost less, the most she has been prepared to pay for a bar of soap has been as much as £13 she was so despartate to find one that was truly fragrant free and paraban and sls free.... i cant get over why it costs more to not put fragrance in something... any how mine are only £2 and i have started specializing in the stuff cos soooooo many of us are allergic. i also put raspberry food flavouring in some and add food colourant. which can sometimes be tolerated by some people. but i really started just for my mum.

i have noticed as i have got older i have started to be more susceptible to smells and hold my breath when opening cardboard boxes as i cant breath. if my kids spray any more perfume or hairspray in our house i swear i will throw them out ... the kids that is. i have already thrown the stuff out over and over and it still finds itself back in our house. their friends bring it in i think but i had an asthma attack last weekend because one of them thought my daughter needed some 'impulse' to pretty up her new dressing table. so i guess i am going to join her soon. never use airfresheners, or perfume myself anyway so i must have always known i didnt like the stuff.

keno25 profile image
keno25 in reply to pottyness

I'm glad you've heard of this, sox to read your mum as it to.. i use all uncented products & clean with Bi soda or lemon & perfume free wipes.. i was simple soap to wash with & Surcare from the supermaket for washing pots & clothes.. I can't tolerate plug in's, airfreshners - dryer sheets etc It's the chemicals inside the products that make me sick. I will post more about this in the future..

pottyness profile image
pottyness in reply to keno25

my mum cant tolerate simple soap for some reason nor most of those allergy tested make ups... we say they were tested..... doesnt mean they were ok though lol. i cant wear any make up except boots natural collection so i may be going the same way. luckly for me its the cheapest range anyone does at only 1.99 for almost every product. bi soda is fab for cleaning. and i use it with vinigar down my drains. i also use it to make bath bombs so i get it in large quantities. she uses surcare too for everything. she doesnt use deodorant instead she uses a crystal. i know it sounds mad but she never wiffs....... but she really does rub her under arm with a big crystal thing. one of my worse asthma attacks came after a dinner party at a friends. un be known to me she had one of these airfresheners that go off every half hour. it was on a shelf next to me and i had no idea as it was a 'fragrance free' one.... rubbish.

keno25 profile image
keno25 in reply to pottyness

Hello Pottyness > I can't use the simple shampoo as it causes me neck pains, it's a shame about the soap for your mum but there are other brands to choose from & supermarkets sell cheaper ones.. What's a bath bomb then lol? I sometimes detox with a salt bath to help me.. I use a crystal too & it's true you don't have body odour even if you sweat alot.. Surcare is good :-) I know the air fresheners that spurt every now & then & i hate them, my family use them & i have to let them know when i am going to pop round so they can turn them off.. My clothes pick up the scent & i have to wash them as soon as i get home to rid the toxins..

pottyness profile image
pottyness in reply to keno25

i avoid friends houses that have them now. my mum started with her MCS from an asthma attack brought on by a well meaning friend having a lit joss stick in the room when my mum came round for a meal. she thought it would remind them of their youth.... instead it nearly caused her death. anaphelectic shock i think the doc called it. scary.

mum uses my soap now [i make it myself and sell it to mates] the ones i make for her have no fragrance or colour and i make bath bombs too. they are bicarb+ citric acid + cornflour + food colour+ food flavour+ almond oil or another oil if the person is sensitive to nuts.... dont want to kill anyone. mum is also allergic to mould so watch out for it. windows, back of wardrobe, and in my case i just found some at the back of the sofa...well i cant move it more than once every preston guild so thats my excuse and i am sticking to it :-) mum can smell washing powder on people but she has no problem with mine cos i use 'shops own' as they dont spend loads of money making the perfume bit stay on the clothes making them have that 'just laundered' smell....

keno25 profile image
keno25 in reply to pottyness

I bet your mums friend was sad about causing her the asthmas attack & anaphelectic shock.. yikes.. It's great you make your own soap, i used to buy Clinique soap for £13 a bar, i no longer do but it was good soap i didn't react to it.. The council once gave me a flat, but they didn't tell me it had rising damp & i lost my bed cause of the mold, i now sleep on a camp bed.. did get another bed but i react to it so it's in the spare room, it's comfortable but i get pains if i sleep on it & the smell of the mattress gets on to my bedding so i had to soak it all in full fat milk for 2 hours in the bath to absorb the chemicals then i washed it with my surcare & now have bedding i can cope with again.. lost clothes too & personal belongings but health comes first.. The council didn't help me find another property so i just did a moon light flick & left it as i couldn't live there any longer.. I can also smell wash powder on people & fabric softener if they come in my comfort zone so i hold my breathe & move away..

My face swells also and one time my whole body was itching, I have a terrible skin rash which won't go away on my arm. I am wondering if I have developed allergies and if I could have allergy testing on the NHS to see what is causing this? Thank you.

keno25 profile image
keno25 in reply to

I have had allergy testing on the NHS & only afew things came up that i reacted too, one being grass.. I don't think any chemicals were tested on me. The doctor doubted my (Multiple Chemical Sesitivity ) & put my reactions down to lack of sleep.. Her opinion didn't matter tho & i never believed her myself as i know my own body & what i react to.. My doctor GP supported me so that's all that mattered to me.. MCS is recognised is the UK as an illness but there are no facilities to treat it.. I am on incapacity benefit with this illness..

LindseyMid profile image
LindseyMid in reply to

Definitely see your GP about this and get tests and perhaps a referral. It's not just allergies or MCS that need to be checked for - some autoimmune and liver problems could cause these symptoms.

keno25 profile image
keno25 in reply to LindseyMid

Hello Lindsey, a referral to where? I did asked me doctor to refer me one time for my liver but he said the liver heals itself & it would be very hard to test it, sounds crazy but it's true.. I know i can't take vitamin pills as my skin comes out in hives & they can take weeks to heal, i also have to avoid certain foods due to hives like eggs/ bananas/ tomatoes/ strawberries/ i don't eat alot of dairy either.. Thanks for the feedback.

keno25 profile image
keno25

Hello Christine > Awareness of MCS is always a good thing, i will be posting more about this in the future..

keno25 profile image
keno25

Hope you feel better soon Julie, positive thinking & prayer help me cope.. :-)

Jane64 profile image
Jane64

I have never heard of this! I have found it very interesting and I think it's possibly answering a lot of previously unexplained questions, for instance why I go mad when my daughter liberally sprays her perfumes and deodorants around the house (usually just in her room, but the smell, to me, seems to fill the entire house!). I hadn't related it before, but I do get confused and irritable when she does it. I also have a similar reaction to paint fumes and other smells.

Thank you for posting this and opening our eyes!!

Definitely worth further investigation.

Take care, Jane x

keno25 profile image
keno25 in reply to Jane64

Glad to be of help Jane.. My brother users Lynx & my body just hates it, my arm aches i get shooting pains, feel dizzy (head fog) etc i can stil smell it around the home when he leaves & it affects me even then for hours.. People don't understand & even my own family have doubted me in the past.. It took me along time to find out my diagnosis after suffering for years has i had no clue what i was suffering from..

LindseyMid profile image
LindseyMid in reply to keno25

Lynx does seem to be particularly bad! I've had to leave shops, restaurants, etc to get away from it.

keno25 profile image
keno25 in reply to LindseyMid

I have done the same Lindsey, i use to wear a facemask but i don't anymore as i don't like the strange looks i get.. Another bad one is when you walk into a shop & they've not long cleaned/ mopped the floor, i also have to leave cause of that.. I have even moved seat on a bus to get away from scents folk wear & opened the window, i had to stop using the tram as there are no windows you can open & some day's it's rammed..

pottyness profile image
pottyness in reply to keno25

its very easy to get to the stage when you never leave your house. my mum doesnt. be careful. as for linx, when my son used to live at home he had to keep his linx in the passage down the side of our house. he had to spray it on before he went to school AFTER he had left the house. i'm sure i could still smell it through the wall......:-)

i understand about the leaving places. ive had to do that with my mum for years. she comes to see her grandchildren in am musical theatre productions and i always buy her the seat at the back of the theater and if when she gets there there is anyone else sat near her sne waits till everyone is in then moves to where theres a big gap. [can take a thousand and we never sell more than 600] other wise she couldnt come. now the smoking ban is in place its made her like a misery not better. she used to be able to sit out side with out having a coffee or a meal but now its where everyone smokes so she cant do it any more. very sad.

keno25 profile image
keno25 in reply to pottyness

I have been there before not going out for weeks on end, i couldn't do that again as i love the outdoors & walking the dogs, i know life is short & not to be wasted :-) when my bro used to live here i use to get him in the end to spray outdoors just like you did with your son.. Good for your mum attending the production, i have done the same thing in church & concerts lol It's best to find places that arn't that busy so she can enjoy her coffee & meal outdoors..

Sarah-Jane profile image
Sarah-Jane

Oh, I didn't know about this and now have to check up on it as I thought it was just me! See, its worth sharing this information! Thank you for doing that but I am really sorry you have to battle with this too. It must make life very difficult, how on Earth do you cope?

I have become more and more sensitive to smells, perfumes make me feel ill and I am afraid they all smell like cats pee after a few minutes and if its still in the air I have a problem breathing. Aerosoles are banned here unless they are used close to whatever they are needed for - but if they have a strong smell I am still affected.

When cleaning the bathroom I have to hold my breath, spray all over tiles and bath etc and run for it! After it has settled down I still can't stay in there for long. I have to rinse fast with the shower and wipe fast too. Otherwise my husband has to do it. I find if I clean the bathroom whilst it is still steamy I can bear it for longer.

I work in a school and the children sometimes spray themselves in class - that really affects me and if I am too close or they have used too much I have to leave the room until it settles.

I am really sensitive to smells and don't breath deeply because of it. I once complained that a lift smelt of cats pee and it was someones perfume! Ha ha ha!

My face, back and arms are spotty and I think its the result of using shower cream - my favourite is vanilla and that smell is lovely - I think they use real vanilla which may explain why. I also have to watch what I use as makeup and to remove make up and am wondering whether all of this connects?

Sorry to write such a lot, but I really feel for you - as I said it must make life very difficult.

Soft hugs

keno25 profile image
keno25 in reply to Sarah-Jane

You just learn to adapt to the situation & know your limits etc there are more people in this world worse of than myself so you just have to get on with it.. Maybe you should try more natural cleaning products too, & try a different shower cream that you may not react to like a Simple one for example, i think it does all connect, you should try using uncented products on your face to see if you have less irritation.. I get a tight chest if i come into contact with spray's etc they can even make me vomit & i have passed out before while visiting a relative at the hospital, a nurse was washing her hands next to the person i was visiting & the cleaning product she was using just took me out & i just missed my head on the sink.. I was advised to go to A&E but i know there is nothing they can do for me as all i needed was fresh air & to be taken away from the trigger.. There are some folk who have started the GUPTA programme & have started to see improvements in their health.. That's another topic..

fairycazzie profile image
fairycazzie

Hi there Keno,

I find that very interrresting! mmmm since i run a cleaning business (only tiny but its mine) and i found in past couple of years since the operation and what i bee through, that i have had to stop using many problems because of respitary issues, i have felt extremely tight chested, thing is i been doing cleaning on/off for near 20yrs! and it is ONLY since the past 2 yrs i have started to suffer! and all the products i use are safe, but it is down to the scents of them that get to me, i have even become alcholol intolrent to a few different types of drink ie lager which i ony ever drank in a pub, vodka i nearly ended up taking myself to hospital i was that scared (none of these i have ever suffered in the past)

I had some blood done on Friday to check for Arthritis as got that many aches, pains etc do not know what is what lol, so just to check and if it comes clear i will still ask for the scan too for arthritis.

I discussed with my doctor and the nurse re Allergies to metals as my gran is and i am, i blatently mentioned this prior to the operation but was re-assured that Titanium perfectly safe! ok i believe you then, but recently i have just got in touch with the person who did my belly piercing the year before my operation and i was told they 'only' use Titanium for belly piercing, hmm interesting since when on holiday i became extremely fatigued, stomache rot and just unwell feeling but put it down to the climate as i have never been abroad before, the tattoeist in spain urgently advised me i had to have it removed as it could poison me as it was badly infected (that sore i dare not have it removed) once it was removed i started to feel ok a couple of days after, so i have mentioned this to the doctor and to the nurse and they have nothing on allergie blood tests but will look into it, as i told them about the 'melissa'. to which they said must be private, but will try help.

The guy who perfomed my hernia has now said 2 yrs down the line that it is too late to have removed as what symptoms i was having has already began so to speak (although i wen tto him before i got intouch with the person who did my belly piercing) so now i am WORRIED and i also read it can lead to MS along with the Rare form of Glandular fever i had 20yrs ago and the stress i ahd too... just great!!!

THANKYOU for that and i will keep that and show them too

xxxxxxx lots of cuddly cloudy huggles

xxcazziexx

keno25 profile image
keno25 in reply to fairycazzie

Hello Cazzie.. A big exposure to a toxic chemical can lead to you having MCS, also your immune system could start to break down after long term use of chemicals or perfume for example, i have been hearing people story's for many years on a site called PLANET THRIVE you should look it up & i will try to post a link.. Vaccines also played a part in breaking down my immune system also long term use of antibiotics for my acne when i was a teen didn't help.. I think it would stil be wise to remove the belly ring.. Maybe you should look into using more natural cleaning products as this would benefit you i'm sure.. Folk with MCS can't tolerate alcholol as there are chemicals in the drink aswel as additives etc Most folk also have food intolerance & choose to eat organic foods to enable them to have more energy..

fairycazzie profile image
fairycazzie in reply to keno25

hi Keno,

How are you today?? it is damp wet and horrible as it has been alll week! which makes us feel more achy i feel on my chest too.

I find this all very interesting and keen to learn much more also, since how I have been re acting, but the little hints etc i drop to doctors why do they not pick up on in conversation,like when i have said i had a problem with a certain drink and felt i could not breath ! the response was it was probably some cheap alcholol and you have to be very careful (i was a bit gobsmacked and replied my mother in law would not buy cheap rubbish)! See she travels abroad 3-4 times ayear and will bring me something back with a fancy bottle. I actually did not like that response.

i feel i hound them sometimes with problems here and tehre like a 'hypochondriac' obviously am not, just shows though i keep going because of different things!

I use organic products aswell as likes of Dettol anti-bacterial.

I will take a look on Planet Thrive.

I do not have the belly piercing lol.. that came out as soon as got infected! and never done again, i just wanted something sparkly to go on my 1st ever holiday abroad to lay in a bikini took me 40yrs to get on the plane.

I find after a day of wearing jewellery that it gets sore and inflamed but i cannot resist it some are worse than others which after 10 mins i after take out.

MCS sounds like a cleaning firm lol.

I wear perfumes and seem ok, but body sprays are different, so i use scent free or allergy free roll ons etc.

I am glad you brought this to light though it makes my allergies to metals post feel like i am not daft!! I just need to research and find what bloods have to be taken so i can tell my practice. (this is what nurse says) xxxxx lots of snuggly huggles

ps i wrote all that down with no spaces lol etc as i am no good anymore another thing thats happend and the spellings and using wrong keys!! i have to go back and guess . It was my profession too as a youngster, but now i feel slack :-( xxx

keno25 profile image
keno25 in reply to fairycazzie

Hello Cazzie.. I have been indoors today, resting & i didn't even get out to walk the dogs because it was too damp.. will be glad when the weather improves, yes it does make you feel achy.. Planet Thrive is a very good site with loads of info i'm sure you'll find helpful.. I used to have 1 ear ring & it kept making my ear swell, so i no longer wear it.. wanted a tattoo but i no it's a big no no for me, the ink contains formaldehyde which is a chemical i avoid, it's a shame cause i'd love one on my arm like a sleeve.. I use a crystal under my arms which is great, no scent tho.. I spell things wrong & my headfog causes me to word things wrong so i have to re read it but sometimes i miss the mistakes & then it's to late to change it once i've posted it... Just hope folk know what i mean lol :-) Don't feel slack it's just the way it is now..

I have never heard of MCS so this blog made really interesting reading for me. Thank you very much for posting all this info Keno, I've learnt such a lot today! It must be so difficult for you in our modern World with all the scents and smells, they are everywhere. It must be incredibly difficult especially when you're not at home being aware of cleaning stuffs, sprays etc around. You certainly seem well clued up Keno which is brilliant. It sounds almost like an anaphylactic shock situation when you collapse, although of course yours is a reaction to chemicals. To have MCS as well as Fibro, goodness me - thank you again for drawing our attention to MCS, more of us will be aware of this condition now. :) :)

keno25 profile image
keno25 in reply to

Thanks for the feedback LibbyDe. It can be difficult yes, i try not to let it get me down.. I've done my own research over the years as the doctors don't know about MCS it seems, When i visit the doctor i'm in the room less than 5 mins & i've had no help from them, no support.. Just been sent for allergy testing & that's it.. Forgotten about really.. When i passed out in the hospital my blood pressure dropped as the nurse checked it & she also took my blood sugar which was ok, i was wheeled out in a chair lol I have a great sense of humour which helps me cope.. I used to be a singer at a holiday resort & songs i've sang for a long time suddenly i get head fog & forget the lyrics because of a reaction to something near me, perfume can also take my voice away & i sound horse, so it also affects my passion in life which is music.. When i do sing now in public (church) i make sure i have the lyrics on a stand just incase i have a metal block.. I use my own mic too as i know there is no scent on it that can take my voice.. The person that understood me & how MCS affected me as since passed away, so the only people that really understand are my friends online who suffer with the same illness..

RUBY51 profile image
RUBY51

Hiya all, I am new to the site and have read Keno25's postings and all the replies with interest for which I thank you all. I am a fibro sufferer, had it for many many years but only diagnosed 6 years ago. I have not heard of MCS either but I have very odd reactions to things. One of my main ones when I am out is dishwashing fluid would you believe?! I used to go into one particular pub and as soon as my lips touched the glass or cup they would burn (I still get this now) after two drinks my throat would constrict so that I found it hard to swallow and was very sore and I could hardly speak. If the glass or cup was rinsed before they put the drink in it I was ok. I cannot tolerate a lot of perfumed products. Im not sure what anyone has researched about what is in deodorants etc but quite often people react to the aluminium that is in them. This has caused bad skin reactions and eczema etc in some of my friends.

I have found people with very bad dermatitis etc that have had it for years been to Hospital etc and can't shift it. First two questions I ask are do you use Lynx and or Dove. My friend had used Dove all his life and had the dermatitis he stopped using it and hey presto it went! I use SBC products mainly or some of the shea butter L'Occitanne products from a well known three lettered shopping channel which you can try and return within 30 days if it doesn't suit you. All it costs you to try is the postage each way. It is still a lot of money but compared to buying something expensive you are stuck with this seems a good way of trying things. Look at the reviews on the products though. I may as well ramble on a bit more and tell you that I also use SBC's Arnica bath soak and gel to wash in and rub in for pain. I have a few friends who have found this very helpful for pain and since finding this I am on no pain relief tablets. Again please forgive my rambling and I am not sure what everyone has researched but you have heard the expression "You are what you eat". Well its true, if you eat a lot of things that you know aren't good for you they will have an effect on how you think and feel. I am vegetarian through choice and have been for 34 years I don't eat healthily all of the time but I have found over the past ten years that I am very sensitive to wheat. Or I was, although this sensitivity has got less and less the longer I have had little or no wheat. Unless something says it is wheat free or gluten free I understand that it can contain some wheat or gluten without it being listed! Hence why possibly people eat things that doesn't contain wheat but they are ill and don't know why! Also it depends how the wheat is. If I have soup with flour in to thicken it I am ill, but if I have a sandwich of white bread, but not really cheap bread I am ok. If I react to it I can sneeze, cough, throat swells up, eyes swell up, get hot and sore throat and a headache. Regarding the bread the expensive bread doesn't always use wheat grown in this country. The one I used to have uses Canadian wheat! Maybe they don't spray something on it that we do!

Anyway sorry for rambling hope this helps someone somewhere. Don't give up hope. Find someone to give you lots of hugs, and massages and understanding and if they don't get rid of them and get a cat or a dog! I've done the first bit ie got rid of the man but unfortunately I am allergic to cats and dogs though I have had cats. But I get too ill when the cats live with me. Never mind hey.

Big hugs to all you sufferers out there

xx

keno25 profile image
keno25

Hello Ruby 51, I am new to this site aswel, i found it by accident as i only joined the lung cancer group but seen there was more support groups.. I can relate to as if i visit a family member & they give me a tea, if the cup as been washed in say fairy liquid my lip will swell up & stay like it for hours. I can't use fluoride toothpaste, i have to use one that cost me £3 fluoride free, i don't use mouthwash as it gives me ulcers.. I use a stone for my deodorant, it's a crystal one from a health store with no aluminium.. i do miss wearing aftershave but i can't spray it anymore.. My arms feels like a bad sprain also when i come into contact with it via a relative or mate.. Thanks for the information you've shared, above.. Thank God i am not allergic to dogs as they are one of the reasons i keep going, maybe one day i'll find love but it as to be a special woman to put up with my illness.. miracles do happen lol :-)

fibromum0f6Uk profile image
fibromum0f6Uk

I can relate to this , I have been diagnosed with fibromyalgia and have been in and out of hospital with many of the symptoms you all describe for the last 8 years . It was only last year that I began to realise I was in fact sensitive to chemicals , my doctors had suggested I change various products to help with itches ,rash,light headedness and breathing and at first I really thought it was a lot of hype - My family and I were very sceptical as we had tried many things to help me feel better to no avail. Then my sister began working from home for a company that has set a standard of chemical free childfriendly products as she has a 3,2 & 1 year old . She began to have more energy and thought it was merely down to the vitamins she had purchased to help with her diet, she also began to loose the weight she had gained on steroids and suggested that I try the switch over too .

It is funny when I look back now but I resisted right up until the winter then we skyped and she sent me more details and explained a bit more about chemical sensitivity and by this stage I had one daughter with exzma,one with contact dermatitis and the other with psoriasis along with 3 boys all of whom swore that when the cleaner had been in they suffered headaches and were treated with migraleve by my GP . In desperate times I decided to try and eliminate all the major offenders and whilst I had always read labels on food I had never really looked at the ones on my dishwasher tablets,loo cleaner,make up etc . I suddenly realised I was not alone in this .

I joined a shopping club through my sister and set off on a challenge to see if I could improve my health and my kids . I am pleased to say the research and the challenge was well worth it . I know help others look at labels and have become much more ingredient aware. what I had not appreciated was that in order for a company to cope with advertising costs, and product placement withing stores and specialist shops drove the prices up and consequently meant that in order for them to make a profit they had to introduce chemicals to keep their prices at a reasonable level. Of course if you cut out media and the shop and buy direct from a company that manufactures it all based upon their ability to do scientific research then you can see how and why the products work better and are safer for your family.

I am pleased to report that my whole family now only 4 months into this year are feeling a lot better , particularly myself - don't get me wrong it was no way a cure - I still have fibro flares -but the triggers in my own home have been removed to the best level that I can ,I have lost 4 stone in excess weight,my rashes and itches have gone,I have been able to supplement my diet without going on a diet and I am enjoying a new hobby and can finally work 10 hours a week from home doing what I love best - helping others . I feel for anyone going through this nightmare - sending you gentle fibrohugs x

keno25 profile image
keno25 in reply to fibromum0f6Uk

Hello fibromum0f6uk. It's great you've turned it around & removed the triggers in your home the best you can, you sound very positive which is great.. Thanks for the information above :-)

I had heard of chemical sensitivity but hadn't thought of a link with fibro. I've always found people who wear strong perfum -especially if it's synthetic - gives me a sickly headache. I've never liked the smell of paint but havn't suffered any bad effects until two years ago when I moved to my new flat and had decorators in. I had bought the paint, but wasn't well enough to do it myself. I went to bed and about 2 am I woke up struggling for breath and wheezine. I'v never had asthma. I made so much noise my upstairs neighbour came down and as an ex-nurse she thought I should call an ambulance because she thought my wind-pipe was swelling up. When it came, the gave me oxygen for a while and some kind of injection and drove me to my dad's (800) yards away and i spent the rest of the night on his sofa. FP gave my steroids for a week and an inhaler. Never needed either again because never painted again. House is like you see on those reality TV shows (before) , but I can breath!

keno25 profile image
keno25 in reply to

Hello WL.. I can't take gloss paint that's just a killer for me lol Before i knew i had MCS my bedroom door was glossed & in the end i had to remove the door & replace it as it gave me pains all night & i knew that was the trigger.. I don't paint anymore, but you can buy an eco paint that's uncented but it's quite expensive.. Thanks for sharing your experiences, I'm glad you were ok & had a place to stay, it takes afew weeks for the paint to settle i guess.. The last time i had the ambulance out was when i had a bad reaction to mold / damp.. That's another thing that really does me in...

fibromum0f6Uk profile image
fibromum0f6Uk in reply to keno25

I ended up on inhalers and oxygen when I went on holiday on a house swap due to mold and damp - i thought I had gone down with asthma but it was yet another allergic/sensitivity response ..I do wonder just how our immune systems cope with all these things , the lighting in certain shops or the smell of a perfumery dept is enough to set us back for days , I hear stories all the time from people who are learning their triggers but I try to remain positive and learn from them - this forum has been very enlightening and I am so glad of your support , thanks.

keno25 profile image
keno25 in reply to fibromum0f6Uk

I glad this thread as been well received fibromumof6uk :-)

keno25 profile image
keno25

Many MCS individuals experience personality changes -- becoming angry, irritated, anxious, fearful, and lethargic -- when exposed to certain chemicals. Most sufferers find it impossible to live a normal life. Shopping and the normal social routines of life can result in acute brain and nervous system reactions, an inability to breathe or a feeling of suffocation, intense headaches, dizziness, brain fog and short-term memory disorders.

shadycurt3160 profile image
shadycurt3160

I am new to this site. I don't know what my condition is labelled as. Whenever I eat or drink something that does not agree with me, my stomach blows up and I look about ten months pregnant with twins. It is also very hard and painful. It is depressing because I have seen an immunologist about this and he has no idea. It can leave me in a lot of pain and embarrassment. I am also allergic to heaps of different meds, also natural ones. Vitamin D gives me extreme muscle pain and the list goes on. If anyone has ever experienced this I would like to hear from you. I could eliminate everything from my diet, but would end up drinking water and dry biscuits and steamed chicken and vegies. I wish there was a simple answer and so far feel as though I am running around in medical wonderland. I have arthritis but am allergic to anti-inflammitores. Any suggestions would be great. Jan

shadycurt3160 profile image
shadycurt3160

So I have already posted my condition and I am new, can't find my post though. Anyway my problem is everytime I eat or drink something that my body does not like. My stomach blows up and I look 10 months pregnant with twins. It is very painful and hard as well. I have shown a friend once and her mouth dropped to the floor. I saw an immunoligist about this, but he is baffled as I do not have IBS. I also have arthritis and allergic to anti-infammiteries, so have to take prednisone to keep the inflammation levels down. I was told to start taking vitamin D once and on the second day of taking them my muscles in my body were so painful I couldn't get off the couch. My doctor said it was probably a virus, but it went on and on and on, until I stopped taking the vitamin D. After twenty four hours the pain went away. I tried it again one month later and had the same reaction. If anyone has experienced this I would be very grateful for ideas to help. Jan

You may also like...

Fibro and Multiple sclerosis

Now the neurologist thinks that it is being caused by Multiple sclerosis. I will get the test...

Emotions,depression and sensitivity

but I'm fed up of feeling so easily upset and sensitive. I seem to spend my whole life beating...

Sensitivity to smells

become really very sensitive to smells and can no longer use the skincare products that I have, and...

Hyper sensitivity ruining my life!

become hyper sensitive to everything to the point where I just want to scream !! Noise, smells,...

Skin sensitivity to cold

or arm etc and it was obviously cold, but not painful like I'd had an electric shock. How can it be...