Hello. I have had IA for over 15 years, and while I was very ill in those early days, I am now doing very well. There are many things that you can do to help yourself, and as you can guess, educating yourself and becoming your own advocate is key to getting better. Also finding one of the few mast cell disease specialists in the world will help you immensely. Because there are so few of them, you will find that some are very open to communicating with your local doctor and giving advice to help your doctor treat you. I am fortunate in that I live in the US, and am a patient of one of these specialists. That is the reason that I know that they will help patients who do not live within proximity to them. (I do not live in the part of the country when my specialist is.)
There are so many ways to begin helping yourself, but it can be difficult if you are feeling ill to begin with. Everything is so much more difficult then.
I run a very active mast cell disease forum for people with IA, mastocytosis, etc. (http://www.mastcelldisorders.lefora.com
) There are over 2000 posts in the various discussion categories. While I can't repost here all the tips over there, here is one of my posts for those new to IA who are searching for answers. Hope this helps get you started on finding some answers.
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 IA/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. Cem Akin in Boston 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
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)
Foods with preservatives
Milk (lactose free is fine)
Potato chips, fried tortilla chips , etc
Coffee, even decaf will bother me a bit
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)
red sauce for pasta
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.