New to the GBS community with questions
August 20, 2015 at 4:15 pm
Thank you for being so willing to share your experiences. I know they are personal and some roads traveled have been extremely difficult.
I’m a 57 year old male and I was diagnosed with GBS just over a month ago (July 2015) and spent 5 weeks in the hospital and rehabilitation.
My feet, hands and abdomen have significant neuropathy (numb, tingly and severe pain). The pain in my abdomen feels like a tightening band all the way across my body from my spine around to just below my ribs. My entire stomach feels like thousands of needles when I rub it with my hands.
Had anyone else had this tightening band feeling in their abdomen and if so did it subside as you made progress and got better.
Thank you for taking the time to read and address my questions. I look forward to getting to know many of you better. Take care and be well.
Mike Greco (Utah)
August 20, 2015 at 5:08 pm
Hi Mike and welcome!
I had the “band” thing too. I thought there was something wrong in my stomach, but later realized it was the numbness in my belly that gave me the sensation. In my case, I believe I ate something that was infected in some way and triggered the GBS. My numbness started in my belly and went up and down from there, not typical. It took several weeks before the “band” feeling began to lessen and several months for it to go away.
Hang in there and you will gradually improve. Don’t be surprised if you still have residuals a year or more out, this is a tough disease to deal with, especially if there is Myelin damage.
If you relapse, get ~3 days of Plasma Exchange followed by IVIg/SCIg. That should get your recovery back on track. I wish I had know that when I was initially stricken.
I wish you a quick recovery!
August 21, 2015 at 9:30 pm
Thank you for your response. This torso pain is bad. Sometimes interferes with my rehab exercises and my walking. Glad to know that yours improved as it gives me hope for a similar outcome.
Glad I stumbled in here and I look forward to being able to share my entire story sometime and perhaps be a positive influence on someone else here.
August 28, 2015 at 9:47 am
I also had the band. Mine was (and still is but much better now) around my ribs/diaphragm and made breathing difficult and coughing impossible. I called it my boa constrictor. 🙂
I think it’s pretty common. It does get better with time. I’m now 3 1/2 years past my GBS diagnosis and it is finally almost not noticeable at all.
My case was pretty severe, so you may improve much faster. I was also 57 when it hit me.
Welcome to the forum, by the way!
August 28, 2015 at 1:53 pm
You described my band exactly! Thank you for sharing. The “boa constrictor” at times is incredibly severe. Your post has given me hope that I will might not have to suffer the rest of my life with it.
September 12, 2015 at 7:39 am
Hi I am Rose and have recently been diagnosed with GBS. I am currently on medication for Rumatiod Arthritis for the past 10 years and Ostreo Arthritis. I am having major problems with my legs hips and pelvis. The pain never leaves me. My right leg is partially numb around my ankle and foot. It’s so irritating!! And feels like I am walking on marbles. I have sensation under up part of my foot. I was in hospital where I was on the drp of polygam for a week. I don’t understand what is happening to me. I am also 60 years old and scared. Please can someone enlighten me on this!! Yes I also have tummy pains but not major but me legs I am so worried about. Thanks so.
September 12, 2015 at 11:54 am
Hi Rose. I was diagnosed with GBS in July. It’s been a very difficult time but it sounds like your symptoms are quite normal and nothing to be overly alarmed about. My feet feel almost exactly the way yours feel it feels like I’m walking on marbles. My legs were getting better and then the nueropothy was leaving my legs and went down to my feet and then it reversed and came back up to my knees. GBS syndrome can really mess with your head because it is frightening it’s been a scary experience for all of us. Hang in there and know you’re not alone.
September 12, 2015 at 12:49 pm
Thanks sooooo much for replying. Everyone I ask know nothing about GBS. The doctor has not explained anything to me only that I have to wait for the polygam to kick in. He said once the meds are in my system it takes 2 to 3 months to take effect because it’s working in my system all the time. My legs and knee’s are killing me and the top of my legs are very swollen. If I stand up it kills me and my knees can’t take it. I went to physico and they told me that it is not my knees it is my hips. I am so co fused. I can’t seem to separate the Ra between GBS
THANK YOU SO VERY MUCH!!!
September 12, 2015 at 2:03 pm
Hi Rose. I have not had my legs swell and my GBS started in the middle of July. I am certainly no expert and again swelling is not a symptom that I have had. I wish you the best in your recovery and have faith that your recovery will happen and look forward to future posts on your progress. God bless you and your recovery Rose.
September 12, 2015 at 2:11 pm
Thanks so much ? Mike!! Will let you guys know when I know. The only thing I am certain of is my leg going dead. Take care and bless you xxx
September 30, 2015 at 3:47 pm
I also had the strange feeling of walking on marbles or pockets of air. It went away first but after about 3-5 weeks for me. I would have moments where it felt like it was getting better and then it was just kidding and came back. It seemed to start with my legs and up my body, then when it was going away it used the same path.
The first few months were hard on my mind. It played a lot of tricks on me. If it was dark or I couldn’t see my limbs, my mind would make me think they are positioned in a way they were not. Sometimes when I was resting, it would make me feel like I was all twisted, but when I look down my body was just laying there like normal.
I just wish I was one of the stories that I got better after a few months. After 5 years, I still have the chest tightening feeling, muscle weakness when being active, and numbness in my arms and hands.
September 30, 2015 at 7:41 pm
I was diagnosed in mid July 2015. I also feel like I am walking on pebbles. It’s painful. The neuropathy in my feet almost went away then about a month ago it started working it way back up my feet and up to my knees. I’m concerned and don’t know if it’s “normal” for symptoms to come and go.
October 1, 2015 at 2:41 pm
For me, it comes and goes in my thighs if I’m walking a lot or using my legs in some light cardio. But it’s more like spotty patches versus full on starting all over again.
5 years, I’ve just dealt with having bad days. Lots of them. If my body or hands get too painful, I’ll take a two days off from work and put myself on bed rest, including no video games. That really seems to help.
October 1, 2015 at 3:31 pm
Can gbs come back
October 1, 2015 at 3:54 pm
GBS can return as RGBS or in the chronic form of CIDP. There are other peripheral neuropathies/variants too that are similar. Please see the following publication for more info:
March 31, 2016 at 7:02 pm
I am so grateful to have found this site. I’m newly dx. Released from hospital on March 9, 2016. I have spent 4 weeks in bed and in pain. Last Friday I got this severe pain under my left breast that radiated to the back in my ribs area. It is so tight and painful. Hurts on inspiration and expiration. Can only lay on my back as the pain is so bad if I try to lay on either side. Unable to raise up without the severe pain! So glad to hear this is normal but I pray that the pain lessens. I thought perhaps blood clot or pleurisy. It has lessened a bit pain in left side back rib area. I was paralyzed from the waist down in the hospital but the IVIG worked thankfully. I pray that I can recover by the end of May so I don’t lose my job! So scared and sad! HUGS to all dealing with this awful syndrome.
May 15, 2016 at 8:51 am
Good luck Laura, hope you have recovered enough to have kept your job!
May 15, 2016 at 11:07 am
Thank you! I am doing better but it is so slow. Walking with a quad cane nowhen and the pain has lessened thankfully! I will not be able to return to work by June 3rd. My husband has terminal cancer and we received bad news last week that all cancer has growth and multiple new cancer. He has rapidly declined in the past few weeks. Asking any prayer warriors out there to please pray for my husband Marty! Wishing you all a peaceful day!
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