I found this forum on March 4 and it has taken me a couple weeks for first posting. First for my GBS story and afterwards a couple questions.
The day after Christmas 2013, I woke up and was unable to get out of bed. I was transported to local hospital in Manila, Philippines by way of ambulance. Initially doctors thought I was suffering from some sort of complication from my Lumbar 5/S1 fusion surgery I went through in early June, prior to snowbird trip to Philippines winter home. Within the first 24 hours my body numbed up from my upper chest to toes and later I was diagnosed with Guillain-Barre Syndrome (GBS). From Dec 26, 2013 to Jan 28, 2014 I was paralyzed from my chest down to toes, totally dependent upon my spouse and health care providers. My health started to improve on January 28. First noticed I could start moving toes, later my feet and within a few days I started physical therapy. On February 12, 2014 I was strong enough to use latrine, and short walks. I was released from hospital and recovery now continues at home. I was in the hospital a total of 49 days.
Now it has been 34 days since my hospital release. I have been walking daily, and now walking an average 10,000 steps (measured by Fitbit pedometer) most days. It is still difficult for me to balance. My walking pace is slow and I stop often for breaks. I am no longer taking Lyrica medication and there is still tingling in both of my feet. Some times my feet will swell up. My biggest concern is my breathing. When I lay down to rest or sleep or bend over to tie my shoes it is difficult for me to breath. The only way possible for me to rest or sleep is with the aide of several pillows elevating my shoulders and head.
Anybody else with breathing problems when they first lay down or when bending over?
My wife and I are scheduled to return stateside next month. Has anybody have any experiences flying after hospitalization?
I sleep in a recliner. It allows me to sleep through the night. When I lay in a bed, my legs and hips ache and I continually roll trying to find comfort. Bending over still causes me to have some balance problems. If you are walking 10,000 steps per day you are doing great. I manage about 4000 per day but I work full time and do not have tme to walk on my treadmill very often.
Your experience is very familiar. You are making good progress, keep it up!
I slept with a bed wedge for quite a while after I came home from the hospital. Eventually you can probably lose it.
The tingling feet may be with you forever. I recommend taking up cycling -- much easier on the feet. Personally, I don't like walking long distances anymore. Padded shoes and thick socks help. I never go barefoot anymore. Even in my house I wear slippers and socks all the time.
I avoided travel for a while, I was afraid of being someplace away from home and having a relapse. I eventually got used to the idea, and started going places again. But I always have that nagging fear in the back of my head. Just something you learn to live with "post-GBS."
I understand there is only a 5% chance of a relapse from GBS. I do not know where I read or heard that. I had GBS in 1988 - 25 years ago. I am a very active person. My only concern at times is that I get completely exhaused - even after a good night's sleep. An example: I was going back to pick up my completed taxes the other day - and I just did not have the energy to walk in the place of business. I just reclined my car seat for about 30 minutes and hoped to take a mini nap - which never happened. Nebretta
What the doctors don’t tell you is that when they say no recurrence (our experience), they are not considering separate episodes. I believe I will have a separate episode. Could be tomorrow, could be 5 years, could be 30 years and I live on guard with that in the back of my mind.
I have not flown yet, but will during spring break. After being diagnosed with fibromyalgia 12 years ago, I flew in an airplane and it became excruciating triggering my worst flare to date. So I’m worried but will have my family there. If I were you, I’d alert the flight attendants.
Good luck, you’ll continue to get well. It’s a very long process.
Lisa.
Nebretta said:
I understand there is only a 5% chance of a relapse from GBS. I do not know where I read or heard that. I had GBS in 1988 - 25 years ago. I am a very active person. My only concern at times is that I get completely exhaused - even after a good night’s sleep. An example: I was going back to pick up my completed taxes the other day - and I just did not have the energy to walk in the place of business. I just reclined my car seat for about 30 minutes and hoped to take a mini nap - which never happened. Nebretta
In this case, I sense your feeling of exhaustion - BUT, relax, we all have to pay taxes, and we all feel the stress. I finished my own taxes in February - I owe big time - I am stressed and certainly need a nap!
Please feel free to peruse the CIDP board. My neuro has classified my post GBS condition as CIDP - He feels that it will be with me for the rest of my life. Since I am already 75 years old, that is not a terrible sentence. It would be hell if I was only 35.
I suffer with numb and tingling feet, lower legs, and hands. I have episodes of exhaustion as well. I take my gabapentin and just keep moving. I am happy to be alive and capable of going about my life - albeit, at a slower pace.
There is nothing bad aout a Nap - it is a good reaction to a stressful situation. Nod off and enjoy. I really like to sit in the sun and feel the warmth of its rays.
bob
Nebretta said:
I understand there is only a 5% chance of a relapse from GBS. I do not know where I read or heard that. I had GBS in 1988 - 25 years ago. I am a very active person. My only concern at times is that I get completely exhaused - even after a good night's sleep. An example: I was going back to pick up my completed taxes the other day - and I just did not have the energy to walk in the place of business. I just reclined my car seat for about 30 minutes and hoped to take a mini nap - which never happened. Nebretta