Chemical sensitivity worsening :(

[eija]

My chemical sensitivity seems to be worsening significantly. The problem is all kinds of perfumes and after shaves, even hair stuff and perfumed lotions. I don't use them, neither does hubby, and my daughters use them only moderately and know how to do it without making me suffer from it. But the world is full of people who do use them! 

For a long time I actually doubted myself if I had it or not. But now there's no question about it, when over and over again I find myself coughing like crazy, wondering why, until I notice some scent around again. And so often others don't find it even if I tell them that it's there and makes me cough and they try to find it.

Today we brought in a pair of second hand sofas, because our old ones really were in bits and pieces. The "new" sofas are tidy and nice and look almost like new. However, after a little while of sitting on them I noticed I'm coughing. Then I realized the scent in the air I had been dismissing, was coming from the sofas. I guess the former owners have sat on them with loads of perfume on. While there today I had no problems and didn't even notice the scent.

After a while I actually had to move away from the sofa. I could sit in the recliner a couple of meters away, with no problems. I didn't even smell the scent. But then the others went to bed, I stayed in my recliner. The scent started to creep on me - and I find myself coughing again and my throat is beginning to feel raw Remains to be seen if I can live with those sofas at all - if the scent doesn't go away the sofas will have to...

But also in general, this summer has been horrid. I've been totally fatigued, migraines if I stop taking my antihistamines, no energy or strength (or brain capacity!) to do anything at all. Some neuropathy symptoms and the antihistamines make my eyes burn and the inside of my nose scarred and bleeding - other than that not much pain or other symptoms from either SJS or Fibro.

But the chemical sensitivity has been crazy! One day I almost suffocated OUTSIDE walking a few meters behind a couple of young men... What makes it worse like this? The antihistamines don't seem to be touching it at all - is there anything to help it, other than a breathing mask? 

[jazzlover]

I have the same problem. Mine was triggered by Lyme disease many years ago. I have MCAS .. Mast Cell Activation Disorder. I also have Sjogren's.

Here is an article you may want to review:

http://www.healthrising.org/forums/resources/mast-cell-activation-disease-the-modern-epidemics-of-chronic-illness-afrin.338/

http://www.corebrainjournal.com/2016/07/028-lawrence-afrin-mast-cell-activation-syndrome/

https://drive.google.com/file/d/0BxK4lGunsmzgLXhrUk9NYVRHemc/view

Also related to Histamine Intolerance:

http://www. curezone.org/diet/low_histamine_diet.asp

[eija]

Thank you, Jazzlover.

I tried reading those articles and the entire issue sounds and feels so very complicated that at least with my current level of brain fog and tiredness I just can't make any sense of it. Other than that it's again something that doctors here either don't know or at least don't want to investigate.

I don't have a doctor of my "own" so I guess I'll just try to get on as best as I can. I'm in no shape to start fighting with some random doctors...

[irish]

Just to let you know that you are not crazy. I am glad someone mentioned the mast cell problem. I don't have that but since my teens I have had problems with perfumes, hair products, soaps and anything that smells. Do no put an air freshener in my house. I get headaches from these plus bronchial spasms with all the other things.

Then there is the new furniture smell, the new carpet smell, the new curtain/drape smell ( I have to hand them overnight and if I have problems back to the store they go) and even the dyes in clothes. I have a terrible time in fabrics shops and furniture stores. Then there is the new kitchen cabinet smell with the chemicals in the wood. I use inhalers so I am prepared. With the over reaction you have I would think that being assessed by an immunologist/allergist would be of great benefit. The autoimmune and immune and allergy response are all very related. Good luck. Irish

[jazzlover]

irish .. The problem is that most allergists/immunologists do not have any understanding of MCAD or MCAS.

I was lucky and found one who did. I had to fire the first one.

[susanep]

I have this going on also. This year for me has been the worst.

susanep

[irish]

Ii understand about having a doctor not know about the Mast issue. The problem is that the immunologists are the guys that should know about this. There are good and bad immunologists. The other thing that I have noticed is that many of the immunologists like to treat mostly people with allergies, etc. It is much easier for them and they don't have to work as hard in their treatments.

The immunologists who like to treat autoimmune and immune deficiencies are the docs who are nosy. They sort of have a thirst for knowledge and like to get to the bottom of a problem They can be found reading and researching and burning the midnight oil. The best way to weed these good ones out is to talk with their nurse or someone higher up in their office hierarchy when making an appointment. Ask if the doctor treats autoimmune patients. This is one good indicator of their interest in the subject. We just have to keep ono keeping on. Treating autoimmune patients is hard work and a lot of docs don't want to spend all that time on it. Good luck. Irish

[Deb 27]

eija, sorry things are getting worse for your chemical sensitivities. I have some as well. New carpet and flooring are  bad for me, some new furniture too sometimes. Some smells will give me a headache.

It's been a rough summer for me as well.  Maybe what others have said about the mast cell disorder is what's happening with you. I hope you find a solution too.

[jazzlover]

Treating autoimmune patients is hard work and a lot of docs don't want to spend all that time on it. Good luck. Irish

-

For sure...

[Judie P]

Eija, I have the same problems and mine are getting worse, too.  I probably started 10 years ago and at the time thought I was always coming down with a cold.  We sell scented soaps, incense and oils in our store and I really had a problem with lavender.  I still can't do it.  This past weekend I had to see clients at a woman's house and she did not know she left the gas stove on half way.  When we walked into the house, the whole house smelled like leaking gas.  It took the whole time I was there to get rid of the smell.  I made it through, however, with a headache, sore throat and coughing.

I am going to check on the mass cells as well.  Love and hugs, J

[eija]

Thank you, everyone.

I've been too tired (and busy) to post on the forum, but trying to do some now. However, I seem to be struggling with finding words - I know they're there, just can't catch them  Well, need to word around them then...

I've been sticking to the antihistamine. Despite that I've had a headache for three days in a row now. Not even the weather explains all of it, but maybe other things do, like stress, overdoing (going through stuff in my bedroom/office and redecorating it), heat etc.

The sofas are still here. A few days ago I sat there for a moment with my daughter because we went through some things on her computer. After a while she mentioned that I'm coughing again. Oh yeah, that's true. Soon I had to leave the sofa. And now, sitting in my (old) recliner (which is bad for my neck), nobody on the sofa, so the smells are free to float to me - I feel constant tingling in my throat.

This is so enfuriating!

I think finding a doc in Finland who's knowledgeable about MCAS is very difficult. Immunologists aren't common at all either... I found a clinic, a private one, which is not "main stream medicine" - they even test both iGe and iGg allergies. Have to check that place better, maybe ask them a few things and then maybe make an appointment there. It'll be expensive, though. And so far I know they're big on diets and I am not one who can cope any kind of special diet - so I'm afraid the visit would just cause me more guilt and feelings of inadequacy...

I'm reading a blog from someone with CFS/ME as well as a horrible case of chemical sensitivity. She mentioned that predisposing herself to chemicals gives her horrible symptoms, like legs going so flabby that she just can't walk. I'm glad I'm not that bad, and hoping won't ever go that far. But the symptoms worsening so much this year does make me worry a little...

Antihistamines seem to be doing so little, if anything, to the sensitivity.

[jazzlover]

You could at least try avoiding the foods that are very high in histamine to see if it helps. You can also try adding Pepcid or Zantac to your regimen.

Also avoid food colorings and junk food.

[eija]

I guess I need to. First I need to dig into what foods are worst and start there. Not looking forward to it, but...

Today again I woke up with a mother of all headaches Possible reasons for that are overdoing, eating a load of fresh strawberries in the evening (histamine!) and new shelves we built yesterday next to my bed - they made me cough a bit when I went to bed.

Today I couldn't hug my daughter because of her deodorant. That has not bothered me before, other than right after if she's applied it. Older daughter came home. She had eaten garlic, and picking her up I had to open the car window because I couldn't manage the smell.

Life is really getting complicated. According to a Finnish article about chemical sensitivity, the symptoms are more intense during cold winter - and I thought this would get easier once summer is gone!

[jazzlover]

I get asthma from any foods high in salicylates. Be careful and begin your search.

[mbr22m]

Have you tried looking up the products you use on the Environmental Working Group website? They have a huge database that you can search and it will tell you how toxic the product is. They put so many chemicals and toxins in things these days and those of us with AI issues are ultra-sensitive to this.
http://www.ewg.org/skindeep/
I had to replace all my products because I was so sensitive as well.
Have you also tried and ELISA/ACT test? I had one done and it came back with a few chemical sensitivities including povidone (PVP), which is in most dry eye eye drops!!    It also came back with strong IGG reaction to dairy, which was what was causing my throat to be swollen all the time. I was coughing constantly. Soon as I cut out dairy, it stopped.