Mastocytosis & exercise - Rare Disorders Message Board

kris10w99 · 08-08-2003, 09:59 AM

If anyone has or knows someone that has been diagnosed with mastocytosis, I'm interested to hear how to stay physically active considering environmental restraints. Any meds you need to take, certain exercises to avoid would be a big help. Thanks!

Brigit · 09-04-2003, 04:25 PM

I am a mastocytosis-patient from the Netherlands, female, aged 46. In my experience exercise is really an issue for masto-patients, because it can trigger allergic reactions. In the past I twice had an anaphylactic shock due to exercise (and 3 due to insects like wasps).
Over the years my energy and condition have so seriously decreased that my body is now in a state of chronic fatigue. I use several kinds of medicine but you should discuss this with a specialised doctor, a hematologist or allergologist, because no masto-patient is alike. That's why they call this a Proteus-disease: Proteus being a Greek see-god that always appears in a different state and form. The mastocytosis society can give you a lot of information (www.mastocytosis.com).
Recently I started an exercise-program to enhance my condition and concentration. This program is tailor-made for me by a physiotherapist specialised in treatment of fatigue, it is basically a very slow build-up of exercise and avoids using explosive energy (NB even a sport like golfing induces allergic reactions in my body, and 10 knee-bendings lead to acute diarrhea). I could choose the kind of exercise that I like and feel safe with, which is walking. I used to hike a lot when I wasn't ill yet and I really miss that. It is to early to tell you if it works but it is something that gives me structure and safety in exercising, and it is something I enjoy doing (and so is my dog). Brigit

zuzu8 · 09-05-2003, 02:09 PM

Kris-
Here is a link to some very general info about mastocytosis, which you may have already. However, when you get there, at the bottom are several resources listed for add'l info, (the National Inst. of Allergy & Infectious Diseases, the U.S. Library of Medicine and the National Org. for Rare Disorders) including, as Brigit mentioned the Mastocystosis Society.

[url="http://www.niaid.nih.gov/factsheets/masto.htm"]http://www.niaid.nih.gov/factsheets/masto.htm[/url]

Good luck,
zuzu xxx

summerbreeze7 · 06-18-2005, 08:58 PM

Hello posters, and to Brigit regarding the exercise and anaphalaxis shock episodes you have had. I was dx with tmep about one year ago. I had been sick off and on for 10 yrs or more. I was dx. with tmj, fibromyalgia,etc. was also told to take antidepressants, but they only made me feel worse. Headaches of the worst!!! I am 44 yrs. old and I too notice when I work out I get dizziness, flushing, without really doing very much. But exercise is the only thing that has helped me to stay positive. Even when I feel like I can't get off the couch or out of bed. Once I get to the gym I am fine. I gained weight after the birth of our second child, and also found out I had a thyroid imbalance. Hypothyroid and nodules that were bx. and checked out ok, but I still have to take the thyroid med. everyday. I read that with my dx. I need to have a medical ID bracelet and a written plan of treatment with me at all times in case of an emergency etc. Has anyone else been told this??? To carry an epi pen etc.?????????????? Brigit, I hope you feel better, and take good care of yourself. I am taking benadryl at night because I use to wake up with severe hives, hot skin, rapid heart beat etc. This was before I was dx. I take esgic plus for my headaches, and klonopin for me helps at night. I didn't have nervous feelings, or panic type situations until my thyroid etc. It's pretty mild but for me; without these meds. I was alot worse. I don't get the morning fog or drowsiness from this so I can get most housework etc. done in am on a good day. Update too!!! I will be seeing a hematologist and an oncologist Mid July. I guess it's time to find out if my TMEP is systemic or not. The symptoms at times can be hard to deal with. I will post again on my treatment/tests/etc. Let's help one another here

Without the support here and all of the info. we can get sure does not hurt. I know everyone has their own treatments etc... I am just stating what so far has worked (most of the time for me) I hope this was of some help!!!!!! I will post soon everyone who reads this!!!!!! So we can all learn together. Mom in California