Hello!  I can relate to what you are going through.  Are you on a good medication regimine yet?

I would suggest that you take it very slow when working your way into exercise again.  APPROACH THIS WITH MUCH CAUTION AND MEDICAL SUPERVISION. Like you, I was a highly active person before I came down with this.

There is some hope however!  This I can offer to you.  I am now able to do about 80% of what I did before.  It took a lot of dedication, medical supervision, and HARD work, but I was able to do it.

I received a great deal of help from the cardiac rehab group at our local university hospital.  I had a consult with them, told them of my situation, and they worked with my mast cell specialist to help rehabilitate me.I basically started out very slowly, walking first, with a little lifht weight training and yoga with medical supervision.   Yoga helped a great deal in the beginning, as the downward poses helped me to adjust to blood pressure changes again. The first goal is to get yourself in very good overall shape, such that exercise is not going to cause you massive physiological stress.  What this means for people like us is that we focus not so much on INTENSITY, rather DURATION.  You have to change your strategy from doing intense, sporadic exercise to doing lower level, sustained and REGULAR exercise.  I began with walking, mild workouts on the exercise bike, etc.  This was done with medical supervision by an exercise physiologist in the cardiac rehab exercise room.  They were aware of my condition, and there were medical staff on hand to help me out if I became symptomatic.  This is VERY important for those who are newly diagnosed, as you will not yet be aware of your limits, nor familiar with how your body responds to physiological stress.  It is a different ballgame with this illness, so prepare yourself for that. The cardiac rehab staff set lower exercise limits based on my symptoms and stress test results.  I wear a runner's heart rate monitor when I exercise, and do not exceed my targeted range they set up for me.  I slowly then began to increase until I became more fit.

After a period of about three years or so, I was able to undertake most of my my former activities at a moderate level.  I can now do moderate-level zumba/aerobics, some figureskating, rollerblading, and bike riding.  HOWEVER, on a day when I do not feel well, or doing bad spells, I do NOT exercise.  I let my body tell me my limits on any given day.  I exercise where there are other people around who are trained to give me first aid, either that, or make sure I hang out with my other friends who have medical training.  I do not exercise in extreme heat, and above all, do NOT let your core body temperature become too warm:  THIS CAN MAKE YOU CAN GO INTO LIFE-THREATENING SHOCK.  Do not allow yourself to become too hot or too cold or too tired.  Think of yourself as "Goldy Locks.... JUST RIGHT!"  Drink plenty of water, with adequate salt intake so that you do not become orthostatic (low blood pressure).  Above all else, if you start to feel any symptoms, stop immediately!/ Make sure you are well controlled on a proper medication protocol before you began any exercise program, and get medical supervision on how to go about this.The extent that you will be able to rehabilitate yourself will depend upon your own extent of illness, it is very individualized. Also, it will vary from day to day.  The progress is slow, admittedly, but do NOT allow yourself to become discouraged, pull out your extra quart of spunk and do not become down on yourself.  I really had to adjust the way I thought about my abilities, not look back and compare myself to where I "used to be" as that can make you very frustrated, not to mention depressed.

I would really try to find some good cardiac rehab people to work with if you can and a mast cell specialist.  They were right no point with me, and were so very helpful and encouraging.  Also, work very closely with a mast cell specialist if you try to do this, as exercise can be dangerous, very dangerous, for those of us with this illness if it is not properly undertaken.  I was very lucky in that I had the support of excellent doctors, people who cared around me, and God's help to do it, but I did.  I have slacked off from what I used to do, and my goal this year is to start doing this again.  In my case, it helped me to cope better with this illness, realizing that all of my life was not "over", and that there will still things that I could do under the right conditions and with the proper controls.

So a good starting point?  Get some medical people on board to advise you, try gentler exercise like yoga and walking, then work your way from there.  Become overall, physiologically strong, and don't focus on intensity so much as regular sessions of longer duration, but at a gentler pace.  It may seem frustatrating at first, but slow and steady wins the race.  If you are in an exercise class TELL YOUR TEACHER WHAT YOU HAVE, WHAT TO DO IN AN EMMERGENCY, AND KEEP YOUR EPIPENS CLOSE BY SO THEY KNOW HOW TO GET TO THEM.

Above all, don't compare yourself to others, or what you can't do anymore.  Focus on what you can do, and you may just find that overall, you are healthier than you ever have been before.  Attitude is everything! It also helps to find other hobbies you can do on days when you don't feel good.  I wound up taking some art classes, and turned out to be pretty good at watercolor.  So during my "bad" times, I have other things I can do.

Wishing you all the best of luck as your try to do your personal best.

I used to love saunas too, but now I wouldn't dare.  Heat is a MAJOR trigger for me... hot food, hot drinks, hot showers, getting in the car on a hot day, a hot room without air conditioning... even exercising too hard or running a fever.  Anything that raises my body temperature will set me off.

If you decide to try the sauna (which I don't recommend), take someone with you who knows about your condition and is prepared to drag you out of there if need be.  Take extra antihistamines before you go in... and if you start to have symptoms (runny nose, headache, racing heartbeat, dizziness, nausea, hives, etc...) get out right away.  Don't try to tough it out.  Limit your time (I would start with no more than 10 minutes) until you know how it affects you.

Heather

Yoga is very helpful for body aches and pains and helps with sleep too.  Don't feel you have to do everything in a yoga class, just do what feels good to you.