Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Nov 7, 2008.

  1. Bunchy

    Bunchy New Member

    Hi guys,

    My Multiple Chenical sensitivities began several years ago after a series of strange viruses where instead of developing the proper flu or cold, I came out in severe hives and rashes and swelled up each time and afterwards suffered awful weakness, pain and stiffness for several years after.

    The last couple of years the MCS seemed to have improved and although I still felt sick and weird when exposed to perfumes, washing powders etc, life became more manageable again. I even got to the point where I could wear perfume every now and then again and use normal good qulity shampoo.

    Fast forward to now - well, earlier this year we stayed at a hotel where they had "freshened" the carpet. I felt the usual severe nausea, itching, increased heartrate etc but luckily we opened the windows wide and turned the A/C up full and I coped - just.

    Last month we went on vacation to Iceland - so clean and pure it was heaven - but the last day we were there DH had run out of shampoo and used one of the small sample bottles they give you in hotels. I started to have major problems breathing and even after opening windows, and DH washing it off I suffered for hours after.

    Last week DH and I went out to eat - I always drink wine as it numbs my back pain on the hard chairs. A few hours later I had an asthma attack (thank God my doc had given me an inahalor to be on the safe side) and my BP dropped but my heartrate doubled. I felt my legs go numb - it was really scary. This alcohol reaction is also getting worse.

    Klonopin got me through these times and antihistamines.

    My question is why has my MCS changed from nausea, disorientation and so on to severe breathing problems??

    I have had a fair few low grade viruses this year and that seems to be the connection but what can I do about it if my body won't just react and give me a normal cold??

    Today we went to a supermarket and I had to get my (unscented) laundry liquid from the washing powder aisle. I was there ten seconds and it's taken me four hours for my breathing to return to normal.

    I'm TERRIFIED by this and don't know what is going to happen to me when my Mom comes to stay for a week in three weeks time.

    I might have to throw her out!!! She has tried to "defumigate" her clothes and has agreed to use my toiletries but she is not getting how bad my problem is and her house stinks of strong washing powder so all her stuff will have that smell on it.

    I also don't know what to do about going out to eat as if I can't drink wine, I can't tolerate the pain of sitting there. It was one of the few things DH and I could still enjoy together now and then.

    I just don't know what to do anymore - DH is going away so Mom is coming to keep me company but as we fall out a lot and she doesn't understand (or want to) I don't trust her to do the things I need her to do to keep me from getting seriously bad MCS problems when she is here.

    The breathing thing is so so scary. How can I cope with that for a week when I can't last 10 seconds in a supermarket aisle?

    Everyone just thinks I am exaggerating but this is very real and very scary to me.

    I'm thinking of buying some masks or one of those mini-mate breathing appliances that you hang round your neck but I'm not sure if they really work.


    DH and I can't take much more of my ever increasing problems. It is putting a strain on our relationship as well.

    Love Bunchy x
  2. mom2many

    mom2many New Member

    I can't drink wine anymore, my legs go numb.
    I also have breathing problems, if any smell is bad enough I feel like I can't breath.
    I find relief from Phenergan if I sick, it really helps but it doesn't kick in right away.

    I really understand about the strain on your marriage, I've been there. It toke DH a while to understand.

    I want to "talk" to you more but it's late and I'm REALLY tried but I want to say I'm here to help and I'll "talk" to you more tomorrow.
    Also there is a MCS board here too.
  3. NewSky

    NewSky New Member

    G'day Bunchy...I really feel for you. I've had extremely severe respiratory problems with CFS/Fibromyalgia etc. After reading your post I realise I've been trying to cope with MCS, too. I do want to offer you hope, though. Because some symptoms, over time, seem to improve all by themselves. Other symptoms (if we're lucky) we find ways to alleviate or temporarily get rid of them.

    About alcohol. It makes me very ill if I have any. I've got a book I read years ago...'The Cause of Chronic Fatigue Syndrome: Light at the End of the Tunnel' by David Eather. I just looked up page 20 (one of many pages about alcohol) and here's an excerpt. ..."However, people with CFS are generally very intolerant to alcohol. Dr Charles Shepherd, in his book 'Living with M.E.' even gives the opinion that if alcohol intolerance is not present then Chronic Fatigue Syndrome is unlikely. This alcohol intolerance and the similarity with symptoms of an aldehyde reaction just screams, "dig a bit deeper." In my pre-CFS days when I socialised I'd only have to drink one or two glasses of wine - and I'd feel like I was going under the table. Makes you think!

    I use a ventolin puffer. I also read somewhere once that if you're out - and someone's having an asthma attack - give them a couple of cups of very strong black coffee. It helps open constricted airways. That's a good tip for all of us with asthma.

    Believe me, Bunchy...I know how scary this all is. I recently had a relapse...and went downhill fast. I felt extreme fear. But am doing the things I used to do, and am feeling better, already. I was going to follow Kallsup's Protocol (on this site) but have so many things happening...that introducing other new ideas just seems to take me time. Although I must get some of the supplements she mentions.

    I wish we could e-mail each other. But I don't think we can do that from this site. Not sure? I've recently joined Dominie Bush's Fibromyalgia Group on Yahoo Groups. Her (Dominie's) Group is closed to public viewing. A lot of people use real names there, and we can e-mail each other if we wish. You can Google her Fibromyalgia newsletter.

    So much more to say. But, mainly right now. Hang in there. Things can get better. Others (and myself) are proof. It's just a matter of finding what helps you, personally. I know it's hard giving up alcohol. I'd love a nice drink or two.

    You can do it! Gentle hugs NewSky
  4. mom2many

    mom2many New Member

    come on over to the MCS board, we have a lot going on there.

    BTW, I found the masks do NOT help, 1st off you can't breath well with them on and you can't breath well to began with if your around something causing a reaction. Also with MCS it's not just breathing the air, the stuff gets in thought your skin also.

    I told my mom if she wanted to see me she HAD to be completely scented free, I gave her a list of items that were safe for me and I bought her some of them. I didn't think she would really do everything I asked but she did.

    I also emailed her this letter,

    I told my mom that this letter was written my someone else and the products talked wasn't necessarily the products I used.
    [This Message was Edited on 11/08/2008]
  5. Bunchy

    Bunchy New Member

    I'm actually more worried about the racing heartrate and my BP wildly changing when in a situation with chemicals.

    I do have an inhalor for the asthma but what can you do about the BP/heartrate thing? Will that land me in the ER? Will it kill me?

    Exhausted now but will revisit this thread tomorrow.

    Thanks so much to all who responded.

    Night all,

    Love Bunchy x
  6. tut90

    tut90 Member

    specially men's cologne, they are so much stronger than women's. I had so many problems with my husband's family, they would come over my home wearing colognes and perfumes and my throat would start to close up. It got to the point that I stopped having them in my house and will not visit them. They would always asked my husband, so how is she able to go shopping. If I go shopping and I smell a strong cologne I just turn around and leave the area. At the supermarket, I don't go through the detergent aisle, I have my husband pick up the unscented detergent for me. When my husband visits them, and he comes home he has to go directly to take a shower because the scents are so strong on his clothing that they will get me sick. Everything I use has to be hypoallergenic and unscented.

    I just bought a wool mattress topper and I have not been able to use it, because it has an odor on it that is bothering me. I've been trying to air it out in my patio, but the scent it's still there.

    Some people just don't understand or they don't want to, unless it happens to them.

    I just hope your mother listens to you.

    [This Message was Edited on 11/09/2008]