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http://mastcelldisorders.wallack.us/yabb/YaBB.pl START HERE! Tips for identifying your triggers and learning how to get better >> Tips for identifying triggers and how to get better >> Deborah's tips! How to avoid triggers (food, lifestyle, stress) http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293583873 Message started by DeborahW, Founder on 12/28/10 at 12:51:13

Title: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 12:51:13

What should you be doing on a daily basis to feel better? You first need to identify your triggers. Everyone has different triggers, but we learn from each other and find many in common. Now, you may think you have no clue what your triggers are, but you simply need to pay more attention. How?

1. Food and drinks will really affect one's mast cell disorder. So, examine your foods. So many masto people are highly triggered by food. Do you know which foods commonly degranulate mast cells? It seems that many of the same foods trigger symptoms in masto people. For example, shellfish and alcohol are 2 major triggers in most people. I am highly bothered by food. Interestingly enough, when I dieted really carefully to lose weight, I ate only natural foods, very small quanitites, and not much variety. My symptoms practically vanished! That tells me how many bad things in my food are bothering me. Make a list of what bothers you even slightly, and eliminate it. Figure out your safe foods and eat just those. Unfortunately trying to be nutritious kind of takes a backseat when trying to simply figure out the few foods that are safe to eat. Worry about the right food groups later after you are "stabilized. Keep a food diary. Record everything you eat and how you felt later. This will help you know what you need to avoid. Once again, 2 biggie no-nos: shellfish and alcohol.

2. Examine your lifestyle. What needs to be changed in order to lessen your symptoms? Stress actually degranulates mast cells, so think about if you have any stress in your life and how to eliminate it. I chose to drop out of my Ph.D. program because of the stress, even though I was at the end of it and only needed to write my Dissertation. This reduced my stress levels greatly. I then started my own business. Being my own boss is great. I can work when I feel well and stop when I don't.

3. Fatigue. Make sure that you get a lot of sleep. Try to shoot for 9 or 10 hrs/night and it will help. (This is one I need to work on!)

4. Stress reduction at any given moment. When you feel terrible, do you sit and focus on it? Don't do this. Try to distract yourself. Pick up an exciting book and immerse yourself in it or find your favorite tv show or movie to watch. Focusing on what is causing you stress will not help unless you are creating a way to eliminate it. Otherwise, worrying about something (without doing anything about it) is wasted energy. It doesn't change the fact, and it only harms you physically.

5. Drink lots of water (I need to get better at this, too!)

6. Examine your environment. Are there any triggers in your home, such as mold, dust, etc? I evaluated my home, because I was out of town for a month and my symptoms subsided and when I returned home, I was a bit itchier and flushed than when I was out of town. I was worried that something in my house triggered me. Should I move? I don't know yet.....still investigating.

7. Identify all triggers and do your best to eliminate them. Don't feel guilty for the actions you need to take. I long ago realized that I need rest throughout the day. I have young twins, and a busy business, but when I need to lie down, I just do. I used to feel guilty about it, but not anymore. My husband now realizes that if I need to rest, then I am going to do it no matter what. Even with a cleaning lady, my house can become a cluttered mess quickly -- little kids can mess up a place in 30 seconds! But, that is just how my house has to be, because I can't clean it, take care of my kids, run my business, and deal with my IA. So, the house stays cluttered. Oh well, I do the best I can, and have simply rearranged my priorities.

As you can probably guess, I now have a pretty calm and laid back personality, but I had to work at it. The more you educate yourself about masto/IA and find the right help, the better you will feel. I guarantee it! I used to feel like I had the flu all the time every day. I used to have nasty attacks and end up in the ER. None of this happens anymore since I started with Dr. Akin and got on the right meds. I also live a life of awareness of my triggers, and I just incorporate avoiding those triggers into my daily life. Easy.

Here is an example of food triggers. These are my triggers. They are probably a good base of common foods. I don't cut out all of them entirely, some I can eat in tiny quantities. Here is my list with a * next to my worst triggers, although I am sure I will forget some. I never touch the foods that I put a next to. They will send me straight into anaphylactic shock.

My triggers:

Garlic (even the smell)
Onions (even the smell)
Spices with strong flavors * (even the smell)
Black or red pepper
Spicy foods *
Raw vegetables (but lettuce is fine)
Cooked vegetables: any gas producing ones, such as spinach, broccoli, cauliflower, eggplant
Cereal (simple corn flakes are as harsh a fiber cereal as I can eat)
Soups *
Fatty foods
Foods with preservatives
Alcohol
Yogurt
Milk (lactose free is fine)
Potato chips, fried tortilla chips , etc
Fried foods
Coffee, even decaf will bother me a bit
Chocolate
Meat, such as red meat, pork
Turkey (sends me to the hospital)
Some fish, such as salmon (mildly bothersome)
Fruits with fiber (such as apples)
Citrus
iced tea
carbonated drinks
red sauce for pasta
Chinese food
Shellfish *

Also, other common triggers for people are: stress, fatigue, heat (as in summer days or an indoor room being too hot), extreme temperatures, strong emotions (as in being extremely excited about doing something you are looking forward to), odors, and many antibiotics. It is important to realize that the triggers, symptoms, and medications are the same for Masto, IA, or MCAD. So, whichever of these one ends up with as a diagnosis, all of these triggers can apply.

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 15:19:15

(Archived from sharon-nc - original forum)
I wish I had the calm and laid back personality. I am working on it, been working on it for a few years.
I know that stress is a huge trigger for me, I also know that I'd rather be playing extreme sports than trying to learn how to deal with stress. Cliff diving seems so much more relaxing to me that learning to deal. So for my first post to triggers, I'd like to talk about some things that I am learning to use to deal with stress. This could be the kindergardner's post on stress, but that may be where I am on the topic.
1. All my woes and worries - I write them down in a notebook that is then placed in a drawer. That way, I won't forget about them, they still exist, devine inspiration may come on one of them or I may solve the underwear crisis by tossing in a load of laundry. But the rule is that once its written in the notebook, I am not to think of it anymore. Its in the notebook so its still there, I just can't think of it. I get to keep my woes and worries, just not ponder them. Sounds crazy, but works well for me, and I wish I'd thought of it myself, but a friend with debilitating chronic illnes told me about it. He may have been wound as tight as me when he started the notebook project.
2. Accepting that there are limits to what I can do - this was not graceful by any means. And, I had to let go of the idea that accepting it didn't mean that I was embracing it or loving it. I was simply coming to the understanding that there are limits to what I can physically do. Didn't think I'd live through this one.
3. Sick days are not for hanging wallpaper - So I am at home because I am to sick to go and do what ever it is I want to do. Suddenly I realize that there are tons of household projects that can be done - need to be done. Once in fact, the only cure seemed to be to get busy hanging that wallpaper I wanted in the upstairs bath. I had all day to do it. Laying on the sofa was stressing me out - I had to do something. I was to sick to lay there and watch TV. So there was the wallpaper, suddenly tools and a ladder. This story ends with an ambulance, the ER calling my husband and my neighbor, a couple of epi shots and an overnight in the hospital. I now have a list of things to do to entertain myself on "sick days" -
listen to music
draw
read
play guitar or piano gently
computer games
write a story
invite a friend to come visit just to chat
Also, this is the husband's rule, but its very good - stay in my pajamas for the entire sick day so I am not tempted to go out and about. Pajama Day turned out to be a great rule because I will sit on the front or back poarch in my pajamas, but I won't hang wallpaper or drive the car or roam the neighborhood or any other ill advised idea that I can come up with.
4. Exercise - not cliff diving, sky diving, going in the boxing ring, or anything else like that. Gentle exercise that feels good to my body releaves stress. Somedays a yoga class works great for me. There are days when I can lift weights at the gym or even kick the punching bag. Swimming has always been a great one for me. Good exercise releases stress - key word on this one is - get it approved by your Doc and make sure that its gentle on your body. The boxing ring one was expecially bad.
5. Get enough rest - I don't enjoy resting, it seems wasteful - with all those other things I could be doing and I am laid up asleep? Crazy stuff. With much efford I have discovered that if I sleep 8 - 10 hours per night plus take an hour to wind down at the end of the day - I not only have less stress, but feel better. I thought this meant I was being a sloth. Turns out it means I need rest.
Trying to Stay Stress Free,
Sharon

__________________
Sharon in NC
15 September 2008 11:36 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 15:21:51

(Archived from eener - original forum)
I find that writing in a journal is a great way to relieve stress. I start by listing 5 things that irritate me, and then I list at least 10 things I am thankful for. So, I get rid of the bad first and then I end on a positive note. For example...

Things that Irritate me...
1. not being able to sleep
2. my sister-in-law
3. when my kids have eaten all the cookies and I'm desperate for something sweet
4. women that show too much cleavage
5. men that stare at it

Things I am Thankful for...
1. fall leaves
2. comfortable underwear
3. family
4. my best friend
5. when there's a cookie left
6. that Merry Christmas feeling
7. Friday Night Lights (on TV)
8. freedom
9. hot chocolate
10. finally nailing that mosquito that snuck into the house!

__________________
Renee 25 October 2008 09:50 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 15:22:53

Renee, you are hilarious! I bet that you could write a really witty column or blog, huh? I always admire clever writing. (All my degrees are English, so you could say that I have had a bit or practice at studying writing style!) Anyway, you really made me chuckle!

__________________
Feel well!
Deborah 25 October 2008 10:10 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 15:24:03

(Archived from eener - original forum)
Deborah, Yes, well, I majored in High School English(lots of writing), but I don't really like teaching that age so I moved to Elem. Love the little ones. I have 3 teenagers of my own so adding a classroom full of attitude all day would just be MAST CELL SUICIDE!!!!! Renee

__________________
Renee 28 October 2008 12:53 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 15:25:41

(Archived from eener - original forum)
On a more serious note, since we are here to help each other........ My doc suggested going to a professional private yoga instructor. AWESOME!!!!!

My yoga guru made me realize that I was constantly under stress even when I said, "Stress? What stress?" She taught me to read my own body language and to really focus on breathing and relaxing. It helps A LOT. I highly recommend it. And this is from someone who has never had a message, I mean massage(see I can't even spell it), manicure, or pedicure, so obviously it was a big step for me.
I use it when I'm in excruciating pain to help alleviate it from 100 to 90, and I use it when I feel myself getting irritated. IT IS WONDERFUL. Try it. Renee

__________________
Renee 28 October 2008 01:08 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 15:29:55

(Archived from terry-wi - original forum)

MY ANIMALS ARE WHAT KEEP ME GOING I WOULD BE A MESS WITHOUT THEM.

Mary and her husband Jim had a dog named 'Lucky.' Lucky was a real character. Whenever Mary and Jim had company come for a weekend visit they would warn their friends to not leave their luggage open, because Lucky would help himself to whatever struck his fancy. Inevitably, someone would forget and something would come up missing.

Mary or Jim would go to Lucky's toy box in the basement and there the treasure would be, amid all of Lucky's other favorite toys. Lucky always stashed his finds in his toy box and he was very particular that his toys stay in the box.

It happened that Mary found out she had breast cancer. Something told her she was going to die of this disease...in fact , she was just sure it was fatal.

She scheduled the double mastectomy, fear riding her shoulders. The night before she was to go to the hospital she cuddled with Lucky. A thought struck her...what would happen to Lucky? Although the three-year-old dog liked Jim, he was Mary's dog through and through. If I die, Lucky will be abandoned, Mary thought. He won't understand that I didn't want to leave him. The thought made her sadder than thinking of her own death.

The double mastectomy was harder on Mary than her doctors had anticipated and Mary was hospitalized for over two weeks. Jim took Lucky for his evening walk faithfully, but the little dog just drooped, whining and miserable.

Finally the day came for Mary to leave the hospital. When she arrived home, Mary was so exhausted she couldn't even make it up the steps to her bedroom. Jim made his wife comfortable on the couch and left her to nap. Lucky stood watching Mary but he didn't come to her when she called. It made Mary sad but sleep soon overcame her and she dozed.

When Mary woke for a second she couldn't understand what was wrong. She couldn't move her head and her body felt heavy and hot. But panic soon gave way to laughter when Mary realized the problem. She was covered, literally blanketed, with every treasure Lucky owned! While she had slept, the sorrowing dog had made trip after trip to the basement bringing his beloved mistress all his favorite things in life. He had covered her with his love.

Mary forgot about dying. Instead she and Lucky began living again, walking further and further together every day. It's been 12 years now and Mary is still cancer-free Lucky? He still steals treasures and stashes them in his toy box but Mary remains his greatest treasure.

Remember...live every day to the fullest. Each minute is a blessing. And never forget...the people who make a difference in our lives are not the ones with the most credentials, the most money, or the most awards .They are the ones that care for us.

If you see someone without a smile today give them one of yours!

01 December 2008 01:49 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 15:32:44

Awww...I love this story! How sweet! I have a huge furry doggie myself (long haired German Shepherd), so I can really relate to this story!

__________________
Feel well!
Deborah 01 December 2008 02:15 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 15:34:12

(Archived from terry-wi - original forum)
Deb,
I have two golden retreviors, a toy poodle and a siamese cat that looks just like a white tiger. and lots and lots of fish. I never have stress when I am with them, just pure joy.They are lifes greatest blessings. Terry
01 December 2008 02:24 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 15:36:28

(Archived from rdnd6 - original forum)

Terry, I also have indolent systemic masto and have been to the NIH for testing recently. Can you tell me what meds you are on? I am on pepcid, prilosec, zyrtec and vitamin D with calcium. Rdnd6 Roger

09 December 2008 08:47 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:30:11

(Archived from terry-wi - original forum)
Roger,
Sorry I missed this post, I take 10 mg of zyrtec twice a day. 300 mg of zantac twice a day. gastrocrom 200 ml twice a day more if needed for stomach issues.asprin 325 mg twice a day,and 12.5 mg of toprol xl once a day. centrum silver once a day calcium 500 mg once a day. b 12 injections once a month. I also use an albuterol inhaler prn and carry epi with as well as benedryl just in case of an episode. I do very well as long as I take everything. for the bone pain I take 750 mg of vicoden with 10 mg of flexerol if needed only at bedtime to help me sleep as I work 10 hr shifts at the hospital. I have to have sleep. these are good meds if you can tolerate them. The asprin regiment has made a world of difference for my flushing and bone pain as well. I went off of it for 20 days for a procedure and boy was I sorry. hope this helps Terry
I guess I should mention this was my regiment before the NIH study Dr. Butterfield and my GI specialist Dr.Rajeev Nayer get the credit for this. Dr.Rajeev Nayar is the nicest most understanding doc in the Wis. area. he is super intelligent and willing to help anyone.He recieived his training at the NIH, as well and is in Racine WI

11 December 2008 08:10 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:31:52

(Archived from terry-wi - original forum)
Roger,
What unresolved issues bother you most in regaurds to the meds? maybe I could be of some help. Terry

11 December 2008 08:13 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:33:27

(Archived from patdal - original forum)
Does anyone have any suggestion on clothing. My husband was just diagnosed although he has had mass cell for the last 4 years. He must wear polos to work but by noon he is is in alot of pain. He has just started his meds this past weekend and we know it takes time but he says he is in so much pain during the day. He says clothes are over rated and if he could be naked he would be fine. He also has allergies to certian dyes and fabrics. He does wear 100% cotton polos and 100% cotton tshirts on weekends but he still has the pain. He is seeing a hematologist at Mayo who specializes in mass cell. He also had us see a neurologist and she put him on a new anti seizure medicine to numb his nerves, he was on gabapentin and is now being weaned off to start the new one. He is on a H1, H2 and a seratonin blocker. I know it takestime for the medicine to work but he is in so much pain. Any suggestions would be appreciated. Thanks!!!!

22 September 2009 01:21 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:35:55

(Archived from Mikev - original forum)
PATDAL:
I was looking at posts when found this one. If you're still out there, see my post about silk & microfiber as an answer to cotton being too rough on his skin & causing lots of pain. It doesn't eliminate the pain but lessens it. I have the same mainly in arms, legs, & feet. On the neuro end, when it was isolated to my feet I went to several neuro docs & was on neurontin & then tried lyrica.They couldn't figure out what was going on because my masto was acting like neuropathy. Found the best neuro in St Louis, but it took 2 months to get to see her & before I got in mine went systemic.Worked with her a few months & took many blood test to eliminate what it could be, tryed nortripelene & 1 other painkiller I forgot name of. Had a body nerve conduction test that was so painful that I almost passed out but withstood it to see if it would tell her something. Finally she did the plain prick test with a needle & I was so bad that with my eyes closed I could feel it before it touched my skin. She concluded it was something else masquerading as a neuro problem but not neuro & sent me on my way. This is just my story & your husband could be different but with a Nasid issues, painkillers are counter productive & triggers for histamine release which in my case means more pain not less.
MikeV

14 January 2010 11:30 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:37:26

(Archived from lori612 - original forum)
Deborah, Funny that you should mention dropping out of your PhD program. I just began one this September and my most recent round of urticaria began in July. Maybe my body knew the stress was on the way. Last time I had hives this bad was while I was doing my masters, back in 2004-2005, although I had round of hives that lasted 15 months between then and now. My stomach kills me when I'm getting hives and I become allergic to EVERYTHING. Short list: antihistamines - H1 and H2 blockers (yes, they make the hives WORSE), salicylates (including aspirin, berries, you name it), I even had a rebound allergy from an epi pen shot! These are all things I'm not allergic to when I'm healthy, but once I get sick, forget it. Based on the masto videos I watched with Drs Akin, Castells, Greenberger (all at Brigham and Women's) and Theoharides (at Tufts), I've made an appointment at Brigham and Women's. I've seen a lot of doctors and had a lot of tests, but most of my tests come back normal. It's crazy: I have all the symptoms of mast cell disorder but the tests say I'm fine. I'm waiting on results from a 24-hour histamine and prostaglandin test. I should mention I have other immune problems: endometriosis, Raynaud's and hypothyroidism. My body loves attacking itself, apparently. Fortunately, being in Amherst means less than a 2 hour drive to Boston. Thanks for everything you do in keeping the communication going between mast cell disorder sufferers!
Lori

27 October 2010 12:12 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:38:41

(Archived from starflower - original forum)
Hi Lori,

Welcome to the group!

Since you have other autoimmune disorders (I do too), you should get tested for auto-antibodies to your high-affinity IgE receptors. That's the ONLY lab test that shows I have a mast cell disorder... even though my symptoms range from hives to nausea/diarrhea to full-blown anaphylaxis. I've had biopsies of my bone marrow, skin, a lymph node, and upper GI along with tryptase, total IgE, tons of allergy tests (both skin-prick and RAST) and urinary histamine... all perfectly normal.

Heather

__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.
27 October 2010 03:00 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:42:00

(Archived from lori612 - original forum)Hi Heather,
Thanks for the reply. I had a total IgE, autoimmune antibodies, complement C3 and C4, rheumatoid factors, anti-thyroid antibodies (to test for Hashimoto's) and a test abbreviated ANA (which I think is just for regular autoimmune antibodies) done by a rheumatologist over the summer who thought I might have scleroderma. All came back normal. Is the test you mention-- auto-antibodies to high-affinity IgE receptors different from the ANA test, do you know? It sounds like our symptoms are very similar. For me, it's very obvious when I'm about to get sick for a while because I start getting bad stomach pains and diarrhea. When I'm "healthy" I'm very prone to constipation- I eat more fiber than most people's grandmothers do. However, I go full force in the other direction when the mast cells go nuts and the hives come on. Interestingly, I've noticed a lot of other people get worse with exercise, but I (thank goodness) seem to improve a little, so long as I'm not in the sun. If I go running in the morning (a couple of miles), I find that it's almost as though I sweat out some toxins and the hives get better. This is also true on nights that I get 'night sweats' - I generally wake up with less hives. If I just get hot overnight and don't actually sweat, the hives get worse. At some point I should probably get a liver/kidney function test to make sure this isn't simply about buildup of toxins or malfunction of organs. I had a theory it was candida and even talked my doctor into giving me diflucan, which helped with the hives once in the past, but this time it did nothing to help. Ok, time to get ready for class. Thanks for writing back! It's always good to talk with people who truly understand what this is like!
Best,
Lori

28 October 2010 07:46 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:43:33

(Archived from starflower - original forum)
Hi Lori,

My ANA is sometimes positive (the highest has been 1:320), BUT... the test for "auto-antibodies to high-affinity IgE receptors" is a special test. It will not show up in the standard tests for autoimmune disorders. Most doctors do not know about it. My blood sample had to be sent to National Jewish Hospital in Denver for testing (I live in southern Indiana). Since you also have chronic hives... even if they're not very bad... I highly recommend getting on the ICUS list-serv and asking for suggestions of doctors in your area who know about this test. (http://www.urticaria.thunderworksinc.com/) I had to fire my first allergist... she misdiagnosed me with food allergies... that's how I found the second one! This test was the KEY to figuring out my mast cell disorder. Here's an excellent article about it that you can take to your doctors: http://www.nejm.org/doi/full/10.1056/NEJM199306033282204#t=article

Good luck!
Heather

__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.
28 October 2010 11:04 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:46:26

(Archived from lori612 - original forum)
Heather,
Thanks so much for explaining the test and for the link to the article! I'll read through it, highlight some sections and bring it to the doctor I'm going to see on Monday. The hives are very severe and often keep me awake or wake me up overnight. I'm taking steroids daily right now. I also have dermagraphism (skin becomes irritated after I scratch it-- a lot of times turning into more hives). I've used the ICUS website as my bible to salicylate allergy and histamine-releasing foods to avoid. I will get on their listserv as well. I actually signed up for their Facebook page and learned a lot from folks and hopefully helped a few 'newbies' to hives on there. Thanks again for the info. It sounds like a lot of people are negative on many of the classic tests. Having a rare chronic illness requires you to do your homework thoroughly and to learn the terminology and tests and scout out good doctors. I might be in school for a PhD in environmental conservation right now, but I feel like I'm working on a medical degree too! Sheesh!
Best,
Lori

28 October 2010 01:02 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:47:39

(Archived from lisathuler - original forum)Welcome to the crowd, Lori, about having to do med school while your studying another course! Been there, done that and still doing it!!! ha! I was halfway through my second degree in education when I got the masto and I began doing "med" school in the midst of it. My classmates began missing me while class was going on and they all knew where to find me - on the computer in the computer room researching!!!! My doctors have each congratulated me and some of them have told me to do med school for I've got "what it takes" they say! They say I'm half way there as it is but that I started it backwards with the disease first and not all the generalized stuff! Haha!! But hey, I'm getting my answers and with that some kind of control over my life once again! This is what it's all about for it's our ignorance which puts us into danger and makes us fear and doubt and makes life pretty much MISERABLE! With the knowledg we gain through our studies, we learn how to take care of ourselves and what our situations are and not to fear so much and with that, we regain a great deal of control again as well as peace of mind!

So, Lori, STUDY ON SWEETY!!! Get Two PhD's - one in masto as well!

Lisa

28 October 2010 02:11 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:49:00

(Archived from lori612 - original forum)
Lisa,
Thanks for the encouragement! I saw on an earlier post you have some anti-histamine allergies as well? I know categorically that they make me worse. I once was admitted to the ER for a bad case of hives and they pumped an IV full of antihistamines into me and I turned into a time-elapse video-- I got MUCH worse. All the hives clustered into mega-hives. It's a rare allergy, but it is possible. Now I avoid all H1 and H2 like the plague. It's funny, I never had much of an interest in medicine when I was a kid or in high school, but these days I realize I could have become a medical doctor. I hate the fact that anyone suffers with chronic illnesses.
Have a good weekend!
Best,
Lori

29 October 2010 09:45 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:50:31

(Archived from edubrovs - original forum)
Hi,

I am a freshly diagnosed proud owner of the masto spots. I think I probably had this all my life so I am not sure if I need to get upset by something that was always there or not. After all, if I put a name to a condition I had since I was a kid and that has no real cure, then does it really make a difference? My story may be interesting because my entire life I always disliked alcohol. I also have a severe dislike for medicine and only take medicine of any sort if I feel like I am about to die... in speaking to my dermatologist she suggested that my behavior is probably what kept me out of hospitals.

In terms of triggers, I dont really know what that means.. I remember as a kid that I may have had an episode or two of what I like to describe as spontaneous expansion... quick trip to the hospital, a nice needle of anti-histamine and I was back to normal size.

I had a strange reaction to the sun...chronic bronchitis (at least what the doctors thought)..I was the only 10 year old with sunglasses...lucky for me Michael Jackson was IN... but joking aside.. I immigrated with the family to Canada and BOOM, everything went away. No alergy to the sun, no bronchitis all gone. Then a few years ago I started getting the spots..I thought they were a man's stretch marks as I was losing weight at the time. But it would seem the number of dots grew until a few weeks ago I went to the dermatologist, quick biopsy and I got me a shining new name to my condition.

So now, I am not sure what to do.. I got into triathlons and planning to do an Ironman. My dermatologist told me that exercising my cause me to go into enyphalectic (pardon the wrong spelling) shock of something like that and that I should be taking reactine or claritan on a daily basis... but I am resistant. Why would I do that all of a sudden? is it really necessary? I have not had a severe reaction probably since I was 8 or about 30 years ago... what do you folks think?

Now in terms of reactions..I can get itchy some times but normally more if I get hot and sweat (but normally during exercise), I can get itchy if I sit in a hot jacuzzi for a while.

I dont really know of any other triggers to my itchiness...at least not of the top of my head but it would seem that everyone is quite different...

My biggest issue is the spots in my mid-section and primarily on my side.

I dont really understand this disease but all I know is that I may have made the right choices instinctively by not drinking alcohols or smoking or taking over the counter pills every time I had a bit of a headache. I have even gone as long as 12 years in not seeing a doctor...

I have no intent of giving up cycling, running or swimming. I plan to complete my first IRONMAN within a year. Already ran a number of 1/2 marathons. Slowing down is not an option here this condition is something that I have been living with for years or perhaps all my life and given that it has no cure, why should I change?

Looking forward to your comments and suggestions..and if anyone else on here is quite active as well I would like to know how you cope.

I also heard that this thing can be internal/external etc.. No idea what I have, I still have to do the blood test (finding a clinic that does this test in Canada is a bit of a challenge..). All I know if that when I am running, I feel good and I am beginning to listen to my body since it obviously knows better than I what it needs...

Cheers,
Ed

29 October 2010 05:51 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:52:31

(Archived from jillg - original forum)
Hi Ed,

You might find this link to the Canadian Mastocytosis forum of use to you:

http://cmsadmin.proboards.com/index.cgi?board=paypal&action=display&thread=833

If you get itchy when exercising, then I would weigh in on the side of taking an antihistamine. If you do have a reaction, you can go into anaphylactic shock which can be life threatening.

Good luck on that ironman!!!!

-Jill

29 October 2010 09:00 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:54:57

(Archived from lori612 - original forum)
Ed,
Here's my 2 cents: I've found that this problem manifests in very different ways for different people, and sometimes a trigger for one person helps another. For example, most people get relief from anti-histamines. They make me worse! MUCH worse. Other people find exercise makes them worse, but I find my morning run actually helps make the hives go down. I think it has to do with sweating out toxins. On the other hand, if I exercise in the middle of a hot, sunny summer day, the combo of sun and heat make me worse. Have you ever experienced an inability to breathe when exercising? Do you feel like your symptoms get worse when exercising in general or just when it's hot or sunny? Make note of these things. The doctor has to warn you that your symptoms could get worse with exercise, but you know your body best. What time of day do you feel worst/itchiest? Do NSAIDs (aspirin and ibuprofin) or other things that fall into the salicylate family (berries, tomatoes) make you itchy? This is a common trigger for mast cell/hives folks, myself included. The other thing I want to say is I know exercise really improves my ability to cope with stress. If I couldn't get out my stress via exercise, I think I'd be even sicker because I'd be bottling all the bad stuff inside my body. For an extreme athlete like yourself, I'm sure you'd be even more lost without exercise. Maybe you'll need to modify what you do (if sun or water make you worse) but I don't think it would be good for you to stop altogether. Let's face it: this is a life-long diagnosis and if the things that make you happiest in life are off limits, you're likely to be just as miserable missing out on doing what you love as you would from being itchy (again, if you can't breathe, that's too dangerous and you must stop). For me, avoiding berries sucks, but it isn't worth the result of hives. However, hiking on a beautiful sunny day is worth that risk for me sometimes. Learn your triggers and pick your battles as you go, one day at a time. Good luck with the Ironman!
Lori.

30 October 2010 10:08 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:56:44

(Archived from lisathuler - original forum)
Lori, that was a WONDERFUL reply! BEAUTIFULLY SAID!!!

Lisa

30 October 2010 11:17 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:58:17

(Archived from jysmith - original forum)
There used to be a drug called "Intal" on the market that was an orally inhaled cromolyn sodium. It was used to stabilize the mast cells in the lungs, reducing exercise induced asthma. I wonder if anyone knows if there's a similar drug available now. I believe Intal is no longer available. Joan

__________________
Take care, Joan

*******
"I try to take one day at a time, but sometimes several days attack me at once."

30 October 2010 12:59 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 16:59:30

(Archived from edubrovs - original forum)
Thanks Everyone! Very useful information. I dont have any trouble breathing during exercise and interestingly enough I eat quite a bit of berries and tomatoes and I did not think they make me itchy, but I am going to check this out to see if they do.

I probably had this disease since I was a kid, I remember one time I had major trouble breathing during a 1.5km race back in high-school or even junior-high and I think it was attributed to bronchitis which now I realize may have been a simple mis-diagnosis. But thats it. I never had another such attack. Of course, living with this disease for probably all my life I may have adjusted sub-consciously so that being itchy perhaps is something that I may be used to without it impacting me. I am going to try and pay attention to this, but again, I think that in many of these instances our mind wins over body and I can really easily begin to attribute every little itch, ache or injury to this disease, but I guess at the end, the question is whether there is any benefit to doing this. After all, this condition is one that we cannot really do too much about... at least not at this time.

When I heard that I have mastocytosis, I started reading... of course I found the diagnosis that in some instances you may have 1-3 years to live (I forget the paper I read) so I got a bit depressed, then my wife told me that in that case I should have been dead when I was much younger...I guess this is the kind of disease you need to accept, study your own body, adjust and continue with life. There is little point in getting depressed and giving up on life. That would be crazy! Sure, I can stop exercising, gain 200 Lbs, be depressed and then die from a stroke... or I can push myself, enjoy every second and perhaps just be a little more careful in monitoring how certain things impact my body.

I think we all have instincts that we need to listen to. For me, it would seem I managed to make the right choices in avoiding OTC drugs, avoiding alcohol and other triggers. I bet we all have these instincts and just need to listen to them. Somehow, our bodies have the ability to adjust and know what is good for us!

When I do my first IRONMAN I think I will wear a shirt with the mastocytosis printed on it.. bring some awareness to this condition.

Cheers,
Ed

31 October 2010 10:02 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 17:00:53

(Archived from mikev - original forum)
Ed:
I agree with Lori, I work out used to be heavily but now lightly every morning before work and for me it usually is my best time of the day. I also walk & do a light work out after dinner. I used to play competitive tennis until masto got me. Have had to modify work out routines to lighter and watch working outside in the yard in the summer when it hot as I tire much more easily now. I still love to be outside as much as possibe since work in an office inside all day.I also agree that it's a great stress relief & also it takes my mind away from my chronic skin pain. Even with asthma I still very seldom if all get out of breath. I just have to watch my OCD tendencies because if I push to hard it will make me very tired & I'll have to take a nap in the middle of the day on the weekend. What a waste of valuable free time plus after the nap I don't feel right for about an hour & Lori I am Nasids intolerate also make my skin pain worst. Well Ed good luck in the Ironman, although I played tennis for more than 35 years 4-5 times a week competively & was in great shape, to do an ironman with masto would be a great accomlishment as far as I'm concerned. I miss the competion but masto is such a tough competitor that to battle it every day requires a lot of my energy. One day when you will be like me in my 60's and you'll remember your athletic accomplishments and take great pride in them. Good luck & may your masto be quiet on the days that you compete.
Mike v

31 October 2010 08:36 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 17:01:22

Mike - now THAT was beautifully said!
__________________
Feel well!
Deborah 31 October 2010 10:46 PM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by DeborahW, Founder on 12/28/10 at 17:02:12

Hi Ed,

Since I am now back in town, you get to be the lucky recipient of my advice! Haa! Just kidding!! Actually, I wanted to reassure you that you don't need to change a thing; just add a bit maybe. When I was working out doing cardio for 1.5 hrs every day with a personal trainer who came to my house (that was great!) for about 6 months, I felt terrific!! I was also dieting and eating such a strict diet that there was no chance of me eating any foods or ingredients that would trigger me. I was not on any meds at the time, because I was still undiagnosed then. (I have a mast cell disease called Idiopathic Anaphylaxis. I am one of the shockers. I am very well now and haven't shocked since I started meds. However, I never shocked during those 6 months of exercising/dieting either.) I know that the combination of the exercise and the diet kept me well and kept my mast cells from misbehaving. I cannot exercise in heat of any sort, so I have to be indoors in heavy air conditioning. Otherwise, I get a rash, hives, itchy, and my throat closes.

In your situation, the most that you have are the masto spots and some itchiness if I recall from what you wrote. I would advise that you continue what you are doing, but that you simply be aware. If you get a rash, hives, itchiness, feel dizzy, or have tightness in the chest/throat clothing sensation, then you cannot ignore that. Your body is telling you that something is wrong and that you need to respond to it. I would simply advise that during your training, you carry 2 epi pens with you as well as some zyrtec and allegra. Epis are to be used if you feel like you will pass out. Otherwise, you could take a zyrtec or allegra or both if one didn't halt the symptoms. You don't need to worry now because you don't have any symptoms when you work out, so no need to do anything. I would never go on any meds as preventative if I didn't have any symptoms. Now, I don't know much about the masto spots. Will those increase if you continue to workout in the sun? Perhaps that will be the concern you have to think about and you have to decide if that is something you can love with or not (more permanent spots appearing, that is).

If I were you, I would be looking at this preventatively: I would travel to see Dr. Akin in Boston. I would tell him that you do fine now, and you have no desire to go on meds since you are fine. However, you would like to know if there are any risks to be aware of while doing marathons and training, and what should you do if symptoms appear while you are training. Most of us have to be on meds every day to stay stable. You probably just need the meds as needed in an emergency -- not as daily meds. In other words, just to have with you in case an emergency popped up. If you ever want to go see Dr. Akin, private message me and I will send you his email address, as that is how he likes to be contacted.

In the meantime, good luck on the Ironman! Keep us posted!!

__________________
Feel well!
Deborah 01 November 2010 10:20 AM

Title: Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Post by Jaxx on 02/17/11 at 02:14:08

The worst attack I ever had. The one where I called the ambulance, but was cyanotic and unresponsive by the time they arrived....

Was the very first time I bought something on EBAY. The day it arrived I was so excited. I ran inside, I opened the package.....and blammo. I lost all of my air.

Geez. EBAY almost killed me.

I have a very stressful job. For those events that are going to be bad, and I have no choice but go through them or loose my job.. I take half a clonazepan ahead of the event. That way I can avoid strong emotions.