Oh how I wish I had the answer for you camyb. On a day that I plan to be a little more active than "usual" I increase my mestinon by 1/4 to 1/2 a dose just prior to activity. Sometimes it works for me, sometimes not.
Please be careful when any activity is causing shortness of breathe.
Take care.
Larissa

When I adjust my meds I have difficulty sometimes for a bit. Breathing difficulty for me is a huge red flag telling me to take it easy. Usually with med changes it takes a couple weeks for my body to become "normal"(my normal) again.
I also rest more with med changes. Not sure inhaler would help with MG.
Ann

Yes--in medical terms it is called the Three Little Pigs Syndrome--from the big bad wolf hufffing and puffing while trying to blow the house down.
My pre-MG diagnosis problem was mainly breathing and now that I am in mostly remission, what still remains is some huffing and puffing. However, as that is better than MG meds, I have decided that huffing and puffing is acceptable. Now, I just need to take on some of those big bad wolf characteristics--maybe chase Red Riding hood to get motivated to exercise.....
Good Luck

I go SLOW...sometimes I have to stop...sometimes just slow down. I've gotten pretty good at figuring it out. Usually I can just really slow down and keep a rhythm...but I have to really be careful and always wear my bracelet. NEVER be reckless about this.
The second I feel the shortness of breath coming on I slow down and let my body acclimate. My favorite sport is bike riding because I can do this pretty easily and my husband can do loops around me without slowing him down much :) Easier still on a stationary bike...
Lots of days it just can't be done, though... have to be ok with that. Not worth the risk.
Best wishes to you!
Koev

I am on a haler because of my shortness of breath and oxygen with my cpap and a mini oxygen tank at home. Be careful with your breathing. I just left the hospital from being on a breathing tube for four days in the ICU. My son found me unresponsive at home from breathing problem. God bless. Cabbage7

Sorry to hear about that Cabbage7, but thanks for the warning.

Today I pushed a couch and thought my heart was going to explode. I don't know what happened.

I am weak(er) now with MG. I will be careful.

Personally, I find lifting weights best. I can stop anytime. I feel like my muscles are disappearing.

Thank you so much everyone for your responses

Sorry to hear the SOB is keeping you from full exercise. I can relate.It's been years since I've been able to do more than 3-5 minutes of anything that counts as exercise. Cleaning the house is workout these days! Still, I would say to pace yourself. Maybe just do a bit at a time. Like a few minutes (or whatever you can tolerate) a few times a day instead of all at one time. If you take Mestinon, maybe you could time your workout to be within 1-2 hours after your dose? I usually feel my best about 2 hours after my dose, but it's different for everyone.
I agree to listen to your body. Don't exercise when you are winded.
Have you been to a pulmonologist for testing to see how your diaphragm muscles are doing?

Carly

It is important to understand the shortness of breath. Sometimes we are actually having low oxygen saturation. Your doctor can have you do a fast walk around his office attached to an oximiter to find out if you are having low oxygen. If you have it during activity you may also need an overnight study to see if it falls during sleep.

I had one year where I needed supplemental oxygen both with activity and with sleep. After I was put on mestinon for a few months I was able to wean off the oxygen. I have a pulse oximiter I got on Amazon to test it periodically. If you need extra oxygen it is important to know that. If you are experiencing SOB for another reason then it is important to know that too. You may need a pulmonary function study to help determine where the problem lies.

Muscle weakness can be a problem and sometimes exercises are used to increase strength and sometimes it can be related to low meidcations like pyridostigmine . Also reactive airway disease like asthma can be helped with inhalers.

Pacing yourself can also help with activity as can gradual building up your activityl. I also used pursed lipped breathing when needed to help me breathe. I have a problem in that my heart can't speed up enough when I am active so my respirations have to speed up to compensate. That is due to my autonomic dysfunction.

I think telling your doctor about your shortness of breath with activity will hopefully lead to getting it better defined. I hope you find out more about what can help. Marie

Can anyone explain what Marie means by

pursed lipped breathing?

Thank you.
Hope

Hi Hope,
Pursed lip breathing is a technique used by people with COPD (as well as others) in which you inhale through your nose and breathe out through you mouth with your lips puckered.

Camy - Inhalers are not likely to help with your breathing unless you also have problems with your lungs (asthma, COPD, emphysema, etc.).

Thank you, Unsteady, but can you explain why this helps? I only recently am experiencing shortness of breath. This is all new and scary to me! Thanks for any more explanation, and thank you all for this community where we can share our questions, information, ups and downs.

Hope

just be careful-i was getting sob on slight exertion just the stairs too fast it increased even though i had phersis and upped pred. overnight i became soo sob taking 5 steps,went to er,eval pulm wise but that was okay,o2 sat was normal except on any exertion. one dr decided to do ct scan and surprise!! i had multiple blood clots in both lungs. many small in left lung and 1 medium size in right. i had no leg pain or chest pain.was admitted for heparin iv for 10 days and home on lovenox shots . many obscure blood tests later there is still no reason for the clotsor pes as they are also called. i could have very easily dropped dead at any point! don't want to scare anyone but remember not to blame any new symptoms on mg. as with mg keep track on calendar about strenght,meds .illnesses and life in general. i know i forget when i go to dr or just remember something as minor which was really tough when whatever happened. hope all are well and warm!!

I just started Respiratory Therapy to help with my shortness of breath during rest and especially any physical activity.

I was taught Pursed lip breathing (PLB) which is the act of exhaling through tightly pressed, pursed lips. Doctors and respiratory therapists teach the technique to their patients to ease shortness of breath and to promote deep breathing, also referred to as abdominal or diaphragmatic breathing.

The purpose of PLB is to create back-pressure inside airways to splint them open; moving air thus then takes less work.

Pursed lip breathing is one of the simplest ways to control shortness of breath. It provides a quick and easy way to slow your pace of breathing, making each breath more effective.

What does pursed lip breathing do?

1) Improves ventilation
2) Releases trapped air in the lungs
3) Keeps the airways open longer and decreases the work of breathing
4) Prolongs exhalation to slow the breathing rate
5) Improves breathing patterns by moving old air out of the lungs and allowing for new air to enter the lungs
6) Relieves shortness of breath
7) Causes general relaxation

Here are the steps for pursed lip breathing:

1) Inhale slowly through your nose with your mouth closed; try to take in a normal amount of air.
2) Exhale slowly through your mouth with your lips in the whistling or kissing position.

Breathe out for twice as long as you breathe in (normally in for 2 seconds and out for 4 seconds when possible).

Do not take in a large deep breath. Never try to force out the air.

Coordinated Breathing when exercising.

The purpose of coordinated breathing is to help assure adequate oxygen to your working muscles and to prevent you from holding your breath.

Here are the steps for coordinated breathing.
Inhale through your nose before starting the exercise or activity.
Exhale through pursed lips, during the most exerting part of the exercise or activity.

If coordinating your breathing with exercise is difficult, as you perform the movement, count out loud. This helps prevent you from holding your breath. If you become very short of breath, stop the exercise, use pursed lip breathing to help control your breathing, then start exercising again.

Practice these breathing techniques daily so they become routine. When you feel short of breath, anxious or just wound up, use these breathing techniques.

I hope this helps.

Wishing you the best.

Bruce

I've had shortness of breath for years. Finally, it got bad enough that I went to a pulmonologist. I was diagnosed with asthma as my lung function tests kept declining. I'm on steroid inhalers and ocassional nebulizer treatments now. I'm so glad I finally got help.
The pulmonologist was also able to test and gauge the strength of my breathing muscles. (MIPP/MEPP test I think it was)
It was good to know where I was on that too.

Being able to breathe better (most days) has helped me so much!

I hope you find some answers. I wouldn't hesitate to see a pulmonologist if you have the means to do so.
Hope you are breathing better soon!
In the meanwhile, I would NOT exercise and make it worse.