You will, I pray forgive and understand the plentiful typos that will follow.
I have been a recovering GBS patient since the onset in August of 2005. I have done so much research and back in the lateer part of the first decade I sought out many other surviv ors.
I have arrived at this theory. During the slaughter of GBS itself there is the opportunity to protect both muscles and nerves. The two and a half years that follow as the Myelin Sheath grow back are critical because everything connected to the Peripheral Nervous System is vulnerable. It was a physical therapist who had the "No Pain No Gain" philosophy on my post GBS work who caused so much muscle damage and several destroyed axons. Once the Myelin Sheath have repaired your boduy is as it will always be. There will not be repaired nerves; there will not be repaired muscles. I will forever become bross eyed as I allow the fatigue to take me over. The five warning steps of collapse have well established themselves and will not change. There are three damaged muscles in my lower back; two in my upper back and the n the spinal pain which is substantially different between the L's and the S's. Neuropathy ravages the body, like a mist, leaving numbness: the fingers, the legs, it;'s different in every part of the body and different between every patient. Where we all suffered the disease at onset in the exact sam4e way it has never left two of us in ther same condition. We all understand fatigue to different leveles. We all understand Neuropathy. We all understand pain.
In regard to treatment I am of the phgilosophy thaty anything you ind that works should be clung to. Do not rule out the power of jusic and mind power. If your unable to taste food you must make sure that you continue to taker in an appropriate amouont of calories and a blanced diet. If you are only parti8ally numb oif tastebuds it is possible that there are some foods- or at least spices- that you can still enjoy. There is life pleasure to be taken from food. Make sure you replace it with something. Give yourself a new daily pleasure.
What we haver is each other- this web site is blessing- and the hardship of this disease is liv9ing in a world where not another person understands, not only civilians, but doctors. If we are lucky we find a doctor who at least understand that.
Hello Dave, I believe you are right about not pushing when recuperating from GBS. Many years ago, the late 60's, I worked in a university affiliated physical medicine & rehab center. I took care of several GBS patients during their rehab. I remember our medical director of the center saying the main thing with GBS patients was not to push them too hard or they would definitely regress. So I believe your theory does hold water. I hope everyone will heed your advice, including me. As independent people, we tend to want to push ourselves, but that is not good with every condition. I only have mild GBS and sometimes I know I must rest or I will regret it the next day. My symptoms tend to get worse when I am exhausted and if I don't rest regularly, I find myself flat on my back in bed the following day. Then it is an effort just to take care of my basic needs. I look fine, but I don't feel fine so friends and family don't always understand and want you to push yourself. It is hard to be patient with this journey. I am thankful for this site for the support and exchange of information. I am sorry you have had complications. May you continue to heal through your journey with GBS.
You got it exactly right. Friends and family and even my co-workers look at me and think I am fine because I do look fine on the outside. It’s hard enough to explain what it is like so I don’t expect anyone to truly understand.
Speaking as a survivor AND a physical therapist you are absolutely right. I learned through my PT education (after graduating) that GBS does not follow the no pain, no gain philosophy. It is hard for anyone who has not been there to understand, not even my old boss (a PT). Keep moving forward, slow and stead wins this race.
Krysta please give me your opinion on this question. If GBS damages the Mylar sheath of the nerve then it seems to me that physical therapy will not speed the regeneration of the Mylar sheath? Correct?
Thank y’all so much for adressing this!! I have been so frustrated by doctors telling me that there should not be any pain associated with GBS. I was diagnosed in Aug. 2013 and because I was not put on a ventalatir then I should basically be healed. I have been trying my hardest to get them to understand pain that I can’t even describe much less the constant fatique when I spend the day up doing things. Would love to read more about how others have dealt with this.
Deborah unbelievable that your doctors would say there would be no pain. Exposed nerves due to Mylar sheath being destroyed causes the nerve pain. I am currently taking 1800 mg of neurontin to relieve the pain. There is not much more that can be done. It is very frustrating to be active without the pain becoming intense. You need to find a neurologist that understands about the pain associated with GBS. Good luck and hang in there
Hi Dave! So glad to read your post on here. I was diagnosed June 4th, 2012. As you say, I look fine, but I am not fine. Some days I am better than others. I keep wanting to get back to being the same as I was before GBS, but it is just not happening. Are you still taking PT regularly or at least fitness exercise on your own? I took PT, OT, and ST at first. Later, PT and OT. Then finally after 4 1/2 mos. I returned home. Took 4 more mos. of out-patient PT then went on fitness program and went as often as I wanted and at anytime I wanted. I stopped during the Christmas holidays and have not yet started back due to many reasons, weather, illness, company, etc, etc., etc. My question is this: How long do we continue with PT and to what degree? I have gained back the 30 lbs. I lost and more. I am now 73 yrs. old and desperately need to lose some weight, but it is just not happening. Would love to hear some comments or suggestions on all this. I am back driving occasionally and back playing piano in church because we have no one else. Mostly go to beauty shop and church each week and rarely out for a quick shopping trip. Should I be able to do more or force myself to do more.? I still have numbness and tingling and swelling in my lower extremities.
Hugs & Blessings,