Friday, January 4, 2008


One thing that has been frustrating for me in life post-diagnosis is exercise. While I wouldn't say I was ever the most active person in the world, I saw a trainer, went to pilates class, ran 5x a week, just general exercise because I was convinced that my fatigue and general feelings of unwellness could only be helped by an immune system bolstered by exercise.

Before I got my diagnosis, I got very very ill, which made exercise next to impossible. I also went through a severe period of malabsorption, so I ended up losing around 40 lbs very quickly. That was unpleasant for a whole host of reasons, ranging from the damage it did to my stomach and bones, vitamin deficiencies, to just stupid things like how much older I look now, how I had to buy new clothes.

But I digress, that isn't the point of this. One of my current concerns is getting back into exercising while not running the risk of exercise anaphylactic shock, something I didn't even know existed until I had been diagnosed. But it's a possible risk (For those of us with masto it's a higher risk than the general population, and doesn't have include exercise after eating an allergen). So, once I got healthy enough to start exercising, I had to make a few decisions, the main one being, "Do I keep my gym membership?" Aside from the whole potential for shocking due to exercise, staph infections are picked up in a few environments, being prisons, schools, and now gyms thanks to the mega antibacterial stuff they bathe the equipment in. Since Vancomycin is one of the drugs my doctor strongly suggests not taking (and is one of the ones recommended for staph) I wasn't sure I was healthy enough to take that risk. Plus, perfumes, aforementioned equipment cleaning chemicals, were all things that left me hesitant, as well as the fact I knew I'd be an idiot and start pushing myself harder that necessary right from the get go.

I wasn't even sure if I was ready to work out or exercise, as I was still wallowing in the pit of feeling sorry for myself over being diagnosed with a rare, incurable disease. However, I'm not generally one to take adversity laying down, and every doctor had strongly recommended some exercise to help build bone mass that had been lost in my spine and hips as a result of the osteoporosis.

So, I canceled my gym membership with the intent of waiting a few months until I could buy a treadmill, assuming that one less monthly expenditure would make up for one large purchase. My parents caught wind of this, and aware of my current inability to work and my astronomical medical bills, ended up buying me a nice one for Christmas.

I love it, but now it's all about pushing limits. Every day I work out longer, faster, and track my progress and any symptoms I experience while exercising. I won't lie, it feels somewhat demeaning that I used to be able to run 3+ miles in half an hour and now I'm doing about 3 miles in an hour, but for now it's all about building bone density and tolerance. I can't let my arrogance get in the way of temperance, which is difficult. I've been lucky that I've get to go into full blown shock, and don't feel like having it happen out of my refusal to admit that the rules are somewhat different now. But it's a good thing to be doing, even if it is slightly boring. Soon I am going to have a friend teach me some high weight low rep free weights stuff which will burn fat and build muscle, which can only help my body maintain itself.

I'm not sure what the point of this entry is other than stating that it's easy to feel like giving up is the only option, that pushing yourself is scary and not worth it, but I just refuse to see that as the case. I'm not that sick right now (and hopefully never will be)so I figure I should do the best that I can to maintain what health I have control over. That's why I'm doing my boring powerwalking, that's why I'm seeing the hypnotherapist to give me a kickstart with the quitting smoking thing, and a psychiatrist to help me with the anxiety (which I will get into later.I personally cannot espouse the value of therapy enough)

If anyone in the Masto community is reading this, I'd love feedback in regards to exercise; what you do, what you avoid, what you've found to be a trigger..


amy CT shoreline said...

Thanks for writing about exercise. Thats been one of my big concerns too. My husband, an MD, refuses to believe that exercise could possible be bad for any medical condition. But, when I tried to get back to the gym in January. I ran 3X a week for 2 weeks and did intermittent free weights and circuit training. I was thrown into a full blown period of worsening symptoms. My whole body ached bones, joint, etc. plus the exhaustion. I gave up for a bit. Maybe if I stayed with it the symptoms would gradually lessen, but I am afraid to try.

Julie said...

I'm so excited to have found your blog! I'm facing this diagnosis myself (systemic) and, after a 2 month lapse in the gym, took my usual spin class only to break out in hives :(

Heat triggers me. I'm currently trying to find a workout that is effective without increasing my body heat too much. I'm considering in investing in a cooling vest as well.

Mrs said...

Thank you for posting about this. Exercise has been a major concern of mine - well, fear, really, since I get very overheated in the gym and the itching is unbearable.

But reading about your experience, I can see that exercise IS possible. It's all about finding what works and making it work for you.

I wish you well with your condition. xxx

Anonymous said...

Thanks for the article on Masto; I have had Systemic Mastocytosis for 34 years, I was very active with college and high school sports, after having a "shock" on the soccer field I stopped all exercise. I started again around 7 years family doctor recommend that I drnk plenty of water when doing exercise..I started very slowly and in the 2 years my exercise time had gone from 20 minutes to 45 minutes is now 120 minutes each day...I have had very little problems with doing this... when I feel the Mast cells degranulating I simply do not go as hard,but go half or quarter my experience you have to buildup to a level and for me it took years... heat is a big factor in making sure you do not go into shock...water seems to help when I get to hot..hope this helps for exercise has helped me! EW

Anonymous said...

To everyone who has posted their comments; THANK YOU!

I was just diagnosed recently after many years of unexplained exhaustion for the smallest things. Being in the Army, one has to keep in shape. It's been extremely hard for me since other meds have caused weight gain.

Slowly but surely I hope to build up my exercise sessions to help me get back into shape.

~ GI Jodi

Unknown said...

This Candish Sports Stringer Top is a Sleeveless men gym vest which offers maximum comfort, as well as outstanding muscle recovery after exercise.

Liz said...

I have mastocytosis as well. The past 5 years or so I have noticed that periodically I would get very gaseous and stomach cramping and feel the need to poop when I exerted myself. I don't go to a gym but this happens sometimes when I run, xc ski or hike. It seems to be more frequent now and happens about 45 minutes into my activity. My oncologist has me taking Pepcid Extra Strength and suggested I take another one if I know I will be active. It doesn't seem to help. My dermatologist, the one that diagnosed my mast cell disease, suggested I ask my doctor about Gastrone. (Ranitidine). Looking it up it basically is Zantac. Has anyone out there had something similar happen when they exercize? Has anyone had good results with a medication for it??

Anonymous said...

Between the article and comments this is the most useful resource for exercise and masto that I have found--so thank you all. I've never been an exercise fan. When I was diagnosed with Indolent Systemic Mastocytosis 3 years ago, I became even less of a fan. Even the mild 40 minute balance class I was in left me achy, vaguely nauseous and drowsy for the rest of the day. Treadmill is the only activity that seems to work for me. I've yet to find an upper-body workout that is safe. The comment about starting slow and building up may be helpful.

Malik R Washington said...

I have Mast cell disease. I take cromolyn and monteklaust (sp) to help with stomach and breathing. I lift weight regularly and never have problems. Running is a different story when I run races 10k, 5k, Atlanta 10 miler I get sick. I will try increasing my use of anti histamines. I decided I will start running again and not let this evil disease stop me! Wish me luck and I'll keep anyone who reads this updated