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Denise from Indiana (Read 2160 times)
dm2011
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Denise from Indiana
02/28/12 at 08:53:09
 
Not sure where to begin. I've spent a few days reading all the posts on this forum and pray for all of you that your flares and symptoms will become tolerable for you. My situation is not as bad as what many of you are living with.
I found out in Nov 2011 that I have mastocytosis after having a mass in the bone of my right forearm removed. What I thought was tennis elbow (after months of therapy did not help) was referred to an orthopedic who did an x-ray, which lead to an MRI, which lead me to an ortho-oncologist in Indianapolis who did the biopsy-bone graph. On follow up the mass was not cancer, but crystalized mast cells. I have since been with Dr. Nelson, hemotologist-oncologist, at the IU Simon Cancer Center in Indy. My "reactions" have been going on for maybe 10+ years as I think back to the episodes of throwing-up a meal, sensitivity to light, smell, & noise, the spots on my legs and rashes that would come and go for no reason, months of headaches, joint pain, mood swings, irratable bowl syndrome, and lately (before getting on the medications) mental fog, speech confusion and extreme fatigue.
I can say the medications have helped greatly as I don't fall asleep mid day anymore and the hives, mental fog and headaches are all but gone. My biggest question is, what in my enviroment can I remove or avoid to help "my little warriors" from flaring. Is it all just trial and error? Is being on medications (which I hate) the only way to treat this?
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Denise
 
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Joan
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Re: Denise from Indiana
Reply #1 - 02/28/12 at 10:21:37
 
Hi dm, and welcome to the forum!

  There certainly are people on here at various stages of "wellness!"  Great that your  meds are helping, but it's like walking a tightrope until you figure out what's triggering your mast cells.  There can be both environmental and food triggers, and while there are some triggers a lot of us have in common, there are always individual ones, too.

  Keeping a food and environment symptom diary might help you become more aware of what's causing your symptoms.  Here are some examples of common things, other than foods, that can cause many people to flare:

Stress
Heat or cold
Smells, scents, and perfumes, both artificial and natural
Toiletries, such as soaps, shampoos, conditioners, make-up, shaving creams, etc.
Environmental true allergens, such as pollen and mold
Dehydration (even mild)
Cleaning products
Viral or bacterial infections

Medicines  (However, some medicines in each category are more likely to be tolerated.)

Anesthetics
Antibiotics
Muscle Relaxers
Preservatives, fillers, and additives sometimes used in medicines
Artificial colors and/or flavors used in meds

  In keeping your diary, consider what you did, ate, and felt before your symptoms.  Remember that reactions can be delayed, so what you ate last night can affect you this morning.   Note anything stressful that happened that day.   Think about what you ate, how you felt, and where you were before the symptoms started.

  If you have a headache or brain fog after a trip to the grocery store, and you remember you walked down the detergent aisle, it could be scents or perfumes that caused your symptoms.  Is it pollen season and you have IgE allergies to pollen?  Did you have symptoms an hour after cleaning the bathroom or vacuuming?

  People have felt better after removing all scented products from their houses, as well as strong smelling chemical cleaners.  If there are true allergies, removing everything in the house that is an allergen to you might help.  Switch to unscented personal care products.  Use none or only unscented fabric softeners and laundry detergents that are recommended for people with allergies, even though you might not have true allergies.

 Unless you have aggressive disease, and you don't seem to, daily medicines are the  primary treatment.  Some people use a variety of anti-inflammatory, probiotic, and other supplements.  If you're still having bothersome or dangerous symptoms, you might need to increase your meds or add something.  If you want to post what you take, how much, and what time of day, people will respond.  Most of us take H1 and H2 antihistamines at least twice a day.  Some also take PPIs, Gastrocrom or ketotifen, steroids, and others in order to keep symptoms at bay.

  Have you tried an elimination diet?  Some people are helped by the low histamine diet.  You can find one at:

 www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

  If you try it for a month or so, you can then add back foods (one every other day) to see what causes symptoms to worsen.

  Some foods cause direct histamine release from the mast cells.  Others contain a lot of histamine, either naturally or due to poor storage.  Still others are processed with chemicals, spices, additives, preservatives, etc.  Leftover meats are particularly high in histamine.  Most alcoholic drinks are, too.   If you are sensitive to latex or ragweed, find out which foods cross-react with those things.  You'll find lots of posts here that talk about food problems and solutions.

 If you want to post your meds list, people will look it over and see if it seems to be adequate for your symptoms.

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Re: Denise from Indiana
Reply #2 - 02/28/12 at 10:59:11
 
Holy cow great post Joan

what you've listed is mostly what I'm doing right now

Welcome Dm!!
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Re: Denise from Indiana
Reply #3 - 02/28/12 at 13:03:32
 
I agree.  Great Post!  Welcome dm.  You'll find tons of great information on this site and lots of encouragement!  

Lyn
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dm2011
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Re: Denise from Indiana
Reply #4 - 02/28/12 at 13:10:53
 
thks Joan for the post & link to the diet. I am on an H1 & H2 antihistime, a steroid for my continued arm pain (the reason I went to the dr. in the 1st place), and something that is taken only at night. I will post names of the meds when I return home. Have gotten to spend a couple days away from the "everyday" this week with my husband Kiss. I have begun a diary (which I'm not very good at), but it helps to look back on and try to remember. Agin, thanks and I look forward to the chance to learn more about this and just know that there are others out there!
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Denise
 
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