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Mike in Maine

Distinguished member
Joined
Oct 18, 2013
Messages
244
Reason
PALS
Diagnosis
10/2013
Country
US
State
PA, No longer live in ME
City
Pocono's
Do many of experience shortness of breath, not difficulty breathing. I can draw in and exhale fine, it not an intercostal or diaphragm muscle problem. It is like whenever I do anything the least bit strenuous I feel like a have ran a mile full out. I can control it, but I really have to pace my effort. Do you think this is due to the spasticity and every muscle just being tight and takes that much less work to overload the system? Anybody else have this issue?


Thanks
Mike
 
Mike, talk to your pcp about a rescue inhaler or nebulizer, it'll open up the airways making it easier to breath. I use one and it improved my fvc by ten percent. And yes I believe the spasticity can affect your breathing, but your if your airways are more open it will improve the shortness of breath
 
Mike, this happens to me all of the time. I've mentioned elsewhere that I frequently become short of breath just from drying off with a towel, or when folding laundry. And yes, I also attribute this to muscle overload -- your muscles are working harder to do very simple tasks. BUT...I notice pain, fatigue, and weakness in the involved muscles when this happens. And it happens a lot.

I was diagnosed with asthma a couple of years ago -- I've learned to use my rescue inhaler (esp. during the humid summer months). Breathing machine with albuterol, less often.

Mike
 
I also have asthma and find that things are worse if I don’t stay on top of my preventive inhalers. This is more of a shortness of breath after a hard work out, then having trouble from the asthma. My guess is it just another byproduct of that old friend spasticity. As a side note Mike, I notice the pain, fatigue and weakness at the same time and your right it happens all the time.
 
Mike I went to the ALS clinic the end of June and was really suffering, they gace me a device that hooks to my nebulizer and my trilogy machine and it forces the meds into my lungs, it has made me 100% better.

Janie
 
I really have to move to a state that has an ALS clinic nearby
 
Mike could you get to Boston? Mass General is awesome ( in spite of what I said elsewhere about a bad day at clinic yesterday. I see now it was me not them). One of the many nice things is that you have a primary nurse as well as your neuro. The nurse is your contact person for pretty much anything but your neuro and the NP are both really accessible by email too. And every single person I have met there is exceptionally nice
 
Frequently now (maybe 10 -20 minutes) I find myself taking a big "catch up" breath. My inhaler has become a must.
 
Nikki,
I have been down to Boston Mass Gen, that is where I got my second opinion, had a good experience with them. They really seemed to give a you know what about you there. I may be heading back there shortly, the only Doctor up here that was installing the Baclofen Pump, has stopped doing it because he wasn’t making enough profit on the operation. My Neuro has a lead on one other that may do the operation in Maine, if not it’s down to Boston Mass Gen. If is just such a hassle, a 30 minute appointment takes all day. At least they have good food down there, may be the wife and I will make a date and spend the night and do some sightseeing.

Al,
I just find myself moving slower, budget extra time for all tasks and try to stay under the running out of breath level. Not easy, nor fun, but I do notice a lot more this way. I guess there something good too said about taking things slower.

Mike
 
Stay at the Liberty ( aka the old jail) they do give a discount if you tell them when you make the reservation you are an MGH patient. Sister stays there when she comes up for appointment from out of state. Says it is really nice
 
Mike, you're right: The symptoms you describe are not the same as asthmatic symptoms, although asthma can make things worse.

Back to my example: When I fold towels, my arms often become so fatigued that I have to stop. And it is THEN that I notice the shortness of breath. I've come to recognize that this relates to overexertion of muscles in my arms -- which then tells the brain: "Get oxygen out there!" -- and this followed by "hyperventilation" to get more oxygen into the blood. I can only liken that tiredness in my arms to the 10th rep of the 5th set of a biceps workout (without the lactic acid buildup!).

It's really weird that something as simple as folding clothes, drying oneself off with a towel, can be the source of such muscle fatigue, pain, weakness. But then....PLS is an inexplicably weird disease.

Mike
 
Mike, I have the same issues upon toweling off or getting dressed. Need to take heavy breaths. Explained to my neuro and he asked me to cough. I have a good cough so he said all was fine. does tings like this to me all the time to the point where I don't bother telling him most stuff until it is painfully obvious. but in any event, I know what you are saying and my wife witnesses it in me every day.
 
I have a large terry cloth robe that I use to get out of the shower, makes a big difference, I can sit and rest before finishing. $30 dollars well spent.

Janie
 
Life without noticing. Not long ago I very seldom (nearly never) noticed myself breathing. Now... so often, I notice myself breathing. Walk up to the mail box and back (I live on the side of a hill), carry a bag of charcoal, bring in a few groceries or climb a flight of stairs... I notice (sense) my breathing. Now I can hear myself breathing. A few years ago I played softball and I'm sure I had to catch my breath after running to 1st base... but then I didn't even think about it. (As best as I can remember). On the DIHALS section I read about those who "work out" or "lift weights" yet concerned about a "twitch"... wonder where they'd be if they noticed their breathing so often, heard themselves breathing so often, felt themselves breathing so often after just walking to get the mail. Something we once hardly, rarely ever noticed.
 
I don't bother telling him most stuff until it is painfully obvious. but in any event, I know what you are saying and my wife witnesses it in me every day.

Port, you've touched on a critical frustration here -- it is one that I believe many (even most) of us have. I struggle with this EVERY time I see my neurologist (what I should say versus what is not relevant).

Importantly, a key part of my problem is that much of what I feel is often made inexplicable. I cannot relate my symptoms properly in words. And this is because what I feel is foreign to my experience. How then, could a neurologist even begin to understand me -- when I cannot find the words to properly capture the true essence of what I am feeling?
 
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