trouble with chest muscles

Hiya,
Yes, my CIDP hit my autonomic system, and hit the phrenic nerve, which controls the diaphragm. My breathing is becoming shallower and shallower, and have been told a ventilator is in my future, as the CIDP progresses. I have a bi-pap to be used through the day or night, whenever I am having trouble breathing. And now they will be deciding if they will be adding oxygen to it, since my O2 sat. is down to 80.
So, if it hits your autonomic system, then there is the good chance it may hit your phrenic nerve, (you can google it to read about it).
KEDASO
(Ken)

In the two years since I got this, I have also had periods of shortness of breath and coughing. It happens most often when I feel “hot” after walking a longer distance than usual (which unfortunately still is not far) or when trying to hurry (such as when going to work). I feel “wheezy” and it is really hard to breath although my oxygen level is okay. An albuterol (asthma) inhaler helps a lot. I may be unfortunate enough to have gotten asthma in this same time span, but since it is only associated with times that I feel worse or have done more, I wonder if it is part of this neurologic process?
Anyway, the reason to say this is that it might be worth checking to see if your doctor thinks that a trial of an albuterol inhaler might be worthwhile.
The other thing for you and Ken/Kedaso is to see if it might be worth doing pulmonary function tests. At the hospital I work there are specific tests for neurologic conditions–that look at the strength of breathing in and out. I did not have these, but a “flow volume loop” is an easy although maybe less diagnostic way to check this. When someone is in the early stages of GBS, a MIF is checked (maximum inspiratory force) and this also looks at strength of ability to breath in and thus muscle strength of diaphragm and chest wall muscles.
It is worth saying that there are two parts to breathing–getting oxygen into the body and getting carbon dioxide out. Getting oxygen in (oxygenation) is really easier than getting carbon dioxide out (ventilation), but often people including doctors forget that both are necessary. Weakness like we have affects ventilation much more than oxygenation. Our bodies sense this and feel like we are not breathing well enough although the “oxygen level” is good enough. Since boomerbabe, you were on a ventilator you might have scarring in the lungs that makes them not quite work well enough at times. Formal pulmonary function testing might help figure out the problem.
My last comment is for Ken/Kedaso and is that if you feel a lot better after being on BIPAP even a brief time, it might be that your lungs are gradually closing down and collapsing the bottom (atelectasis) which happens frequently when one cannot breath deeply. It can help some people a lot to periodically reexpand the lungs with something like BIPAP which opens the collapsed lung parts back up so that they are usable again. If you have never tried this, it might be worth trying every four to six hours just using the BIPAP scheduled. Boomerbabe, this can also be done with something called an incentive spirometer in which you breathe in deeply for ten times every hour or so; this also helps to “exercise and build up the breathing muscles”. It is a simple little plastic contraption that is used a lot after surgeries to help people breathe deeper. With BIPAP a machine pushes air into the lungs, with this you do the work–it is just a way to remind you to do it and to give you a way to see if you are breathing in well.
WithHope for a cure of these diseases

I had GBS Miller-Fisher variant in July 2002. I experienced a great deal of nerve damage – some permanent. I was constantly exhausted, and often gasping for air. After a ‘sleep study’ it was determined I needed a BiPAP. A few months later I was upgraded to another BiPAP. Later Oxygen was added. Even later still I was switched to an ‘auto vPAP’ with Oxygen. Each of these steps provided a little more quality in life. I can now rest in a fully reclined position.

If your doctor determines you need a BiPAP, get one. It will take a little time to adjust to the facial mask and also get use to the pressures (especially if they are high) so be patient. The benefit will soon be realized. I will not sleep without mine.

Best of luck.

Johnny

I have trouble getting a decent breath. It’s like the air is too thick and won’t “come” in. I found out it was my diaphragm not working as it should due to CIDP. It can get scary.
I’ve wondered about having oxygen on hand.Have discussed this with my neuro but he doesn’t comment on it.
Thank you WithHope for the info.

I actually have tears in my eyes! THIS is the info I have been searching for. I,too, seem to have trouble with shortness of breath and it is at the strangest times. I can climb up our stairs and feel as if I cant even talk, other times I can do something ‘strenuous’ and am fine. My oxygen levels are usually 96-98 which the nurse said are fine. Primatene mist helps short term, have not been able to get back to the dr about an Rx (working on getting ins of some kind). But at my last appt about 4 months ago, the dr said I have allergy induced asthma, but the meds didnt seem to help very much (and made me quite difficult to live with). I even quit smoking 5 months ago because it made things worse…glad I did, feel healthier! I have been doing the deep breathing, holding it, and completely exhaling as far as I can. I have noticed sometimes it feels as if my diaphragm is tired, and sometimes it feels as if my lungs are ‘sticking together’ if I exhale as much as possible. I have also developed a snoring problem since getting GBS. Hubby says I never stop breathing and only a couple of times has he awakened me because I did sound as if I was having trouble breathing (he stays up very very late and is usually watching tv while I sleep). I am just very very glad you posted this, I feel much better knowing I am not the only one. I will ask the dr about this if I can get in to see him again soon.

In regards to your oxygen levels being in the 96 to 98%. Generally my [COLOR=black]Oxygen levels are good to very good while I am up and functioning. It is when I am at rest that I experience my greatest difficulties. Everyones breathing and heart rate slows during rest (sleep). This is the time our body rest [COLOR=black]and rejuvenates for[/COLOR] the next day. However, due to nerve damage in my upper body my breathing[/COLOR] becomes too shalow and this causes oxygen levels to drop to unacceptable levels. You can wear a oxygen monitor overnight, or for two or three day, to find out if you are in need of a biPAP and/or oxygen. Wishing you the best, Johnny