I just read THE MOST informative article I’ve ever read about residuals after GBS, published by the New Zealand’s Nurses’ Organisation. Reading it makes me feel that our residuals have finally been recognized and documented. And it is so incredible to read an actual medical description about what happens to our nerves post GBS. I truly believe that what they describe in this article is what happened to me several weeks ago – something called a “neurologically induced crash”. It would certainly explain why I crashed so hard, why I had shortness of breath, and why my most recent neurological tests showed strong muscle strength.
Without having to read the lengthy article, these are the key points that I found fascinating:
-80% of the GBS patients studied have severe fatigue that interferes with their life post GBS. This finding is contrary to the frequent reassurance that after the initial acute phase of GBS, recovery is complete.
-In GBS, the myelin sheath in the nerves and axons are damaged. Some of these wounds recover, but some do not. What may occur then, is the weak collateral nerves take over duties for transmitting to the nervous system. These alternate circuits have to do extra duty to replace the functions of the nerves that no longer work very well. The collateral nerves are simply not as strong or resilient.
-The nerves can no longer handle extra exertion, and when a person is stressed or doing too much, these collateral nerves are overloaded, and slow or even stop functioning. The person comes to a screeching halt and has a neurologically induced crash.
-Others, and even those that have GBS, may think they have tired muscles, and that they will recover easily with rest. However it is not the muscles that are faulty; it is the nerves that are limiting functioning abilities. Tests for muscular strength will appear fine, for the muscles are doing all the work, and are possibly showing up even stronger than in other people. But it is the nerves that are not functioning.
-Some of the nerves affected are essential to lung function and breathing, which may account for developing shortness of breath.
-It is very important to listen to GBS patients. Those that have GBS are few and far between and are unique. Their bodies and nervous systems have been affected and have very unique problems and issues. The continuing pains, aches and fatigue that those who have had the disease are REAL and should not be taken lightly, dismissed, or ignored.
This article can provide so much insight to those that don’t understand GBS and how it affects people after recovery. If you have been affected, or know someone that has been affected by GBS, please take the time to share this with your friends and family. I finally feel that we can explain to others what it is that we go through