Has anyone else besides me found stress to be a trigger for reoccurring symptoms such as tingling, nerve pain and just plain nervousness? I’ve always been very much in control of my emotions and dealing with things before GBS but it seems lately I’ve been very sensitive to stress. The slightest thing will cause my eyes to start twitching again, or my fingers will get shaky and I’ll find myself overwhelmed and I hate it. I’m also very fresh out of this situation, I was diagnosed in April 2015 and I ended up paralyzed from the neck down, and I just started walking again near the end of July. I always worry about being sick again and I was just wondering if anyone else has been through these feelings? I’m so glad to have found this group. No one will ever fully understand how we really feel from day to day it varies and it’s a scary thing! Thanks for letting me share.
Welcome to the group Asia. I don’t get stressed a lot so I can’t address that but I have found that overactivity will worsen my symptoms. I have also found that my emotions are on a hair trigger, I will cry at the smallest sad story.
I've just had what I hope was simply a ROTTEN setback (still pulling out after 2 months) and I have no doubt it was triggered by terrible stress which resulted in panic attacks. My doc said that stress and illness are two big factors in sending things backwards...and yes, it's all terrifying. This is month 14 into recovery for me and thankfully only my legs were affected, although very badly. I couldn't walk at all for months and still need my wheelchair a great deal. My husband is wonderful but can never truly understand how hard this is, We have 5 young children, so managing some times can be very difficult. In any case, I take my good days and thank God for them!
Be well!
Stress will exacerbate any condition. I too worried about getting sick again, and I also was afraid of ANY illness since mine came on as a result of a virus. But I have had several colds and random illnesses through GBS/MFS recovery that I don't worry about that anymore. Meditation is very helpful in gaining peace, insight, and acceptance.
That said, I still worry quite a bit. Tough to accept having a year of my life turned upside down.
Hi Asia, I am just over a year into this and yes, I find that stress leaves me with the numbness, tingling sensation. I find that too much physical activity and/or too little sleep are my biggest issues. For me, I also find that knowing where my legs and feet are and what they are doing is a challenge when I’m tired; I walk like a newborn calf when that happens! I sometimes have issues with my vision too, as the day goes on, my vision gets blurry. I have not been physically ill since just before diagnosis, I worry about getting ill because I am a nurse, exposed to many things. I have always been a pretty serious hand-washer, hand sanitizer user; now it is more so!
I have found that taking an extra dose of gabapentin helps manage these symptoms. My physician gave me 100 mg tabs so that I can adjust my dose if needed. Most importantly, I take naps and sleep in when I can to manage the fatigue that makes the symptoms troublesome.
Best wishes to you in your recovery!
Stress causes my symptoms to flare a bit too. I feel that the nerves whether damaged or regenerated just don't respond as well to stress, over-activity, or lack of sleep. I will have more numbness or tingling and feel the nerves quivering inside like they are excessively weak. I notice that too as the day goes on. I just don't have the endurance like I did. I even feel this weird buzzing in my leg, arm, wherever, when I overdo things. It's so frustrating because this didn't happen to me before. I'm 16 months out. I have a cap on what I can do and I never know where that limit is until I cross it or my body stops me and then I have to recover once again. My symptoms reflared the first time I had a sinus infection but did not this time. I use hand sanitizer all of the time now and constantly wipe things down. I'm exposed to so much in my job but I'm happy that things did not get worse this time so I feel hopeful. That being said, I did notice the tired nerves in the areas of my body that were hit the hardest. The nerves would shake in my face more as the sinus infection symptoms were worse. I was quick to be seen and get treated, however. I didn't want to test it! Naps are great too!
Thank you so much for the responses. I will definitely be sure to rest more and not over work or even over react to certain things! This forum is absolutely awesome! To have people that feel what you feel or have at least felt it at some point is just a blessing. It’s great to be connected. Now off to sleep I go, so that I can be rejuvenated in the morning! Blessings to you all
Hi, Asia ~
I was also hit with this in April, completely paralyzed and thankful that it did not get to my lungs. I was able to walk fairly quickly, but I think I share in some of your anxiety problems. I find that I cannot handle a lot of things that never bothered me. Large crowds and a lot of noise (even background noise) send my nerves through the roof. I often find myself retreating to somewhere quiet, with no TV and no people just to give myself a little break. I almost feel like I have PTSD from this and I'm thinking (hoping) that's a normal feeling. I am also terrified of a set-back; 2 dogs 3 cats and the kids was talking about hand sanitizer - I have stocked up on the Clorox wipes for this flu season (my GBS was triggered by the flu shot) and have wiped more door knobs down in the last two weeks than I have in the last two years. I also get shaky like you. I can walk all day long, but if I stand still for more than 15 minutes, my legs are visible shaking. My eyes are blurry a lot and some other physical issues - most of which I am hoping will clear up within that golden 12 month time frame. I wish you all the best in your recovery.
Gina
Hi Gina,
The noisy atmospheres and crowds of people are also what send my nerves into overdrive. I completely understand. My eyes were blurry as well, so bad that I couldn’t see the person standing in front of me. The good new is that it did get better. And I believe it will for you also. Inthinknitsba great idea to find a space to retreat to where you can get a minute to regroup. I find myself hiding in my own house because with the overactive nerve functions, I find that I can be a little edgy and sensitive. So to avoid reacting in a way that’s not necessary because I’m overwhelmed, I exit and find a quiet space. It’s great to hear from you, I pray your recovery is continued and steady! Be well!
-Asia
Hi Asia, I too was stricken with GBS in May 2013 and started walking in mid July 2013 and was paralyzed from the neck down. Pretty sure we had the pure GBS and not the chronic version CIDP. Usually when I do a lot of walking or work hard with my hands I notice it tingles and hurt a little more than I'm use to.
Hi Spencer,
Glad you’re here to tell the tale! 
I agree with you, I believe we had pure GBS as well! Thankfully. My hands and feet get tingly also when I do a lot of walking or house work. Sometimes I even find that in the mornings when I wake up, I’m super tingly and numb in those areas, like they’re asleep. Nevertheless were here! Thank God! I hope all is well with you and that you are feeling great!
Hello Asia
I have been dealing with the tingling nerve endings since 1995, my gbs stopped just short of my diaphragm, and yes, I found that since the gbs I am more irritable.
Good luck with your recovery
Charles
Thanks Charles! It’s good to know that we aren’t alone in the way we feel! Stay well!
I work in a high stress job, you can learn how to cope but as far as triggers, the only process I found to work is to learn from them and avoid them. I am absolutely in horror of big gatherings and situations where there are too many people in close proximity, almost like I have a severe claustrophobic case. So I try not to be in that situation, if I have to, I get to the venue early and leave before the crowds get crazy.
I also lived with fear of getting GBS again, I get hope in knowing that if it ever happens again, the probabilities are that it will be a lot less than when I got it almost 10 years ago. I was completely paralyzed and put in chemical coma for 45 days, IVIG treatments were too much and I could only get 2 out of the 4 treatments.
Hi Asia, I'm new to this site. I'm here because after a flu shot two days later my legs were numb. This happened Oct 29th and Oct 31 i was in the hospital. Yesterday was a bad day for me lots of body ache and and I couldn't walk unless I was holding onto walls, and I think you are right stress brings it on.
Hi Sonja! Are you still in the hospital? If so I pray for your speedy recovery. Take it easy and remember it’s a process. Don’t get discouraged. Keep your mind focused on your goal and don’t allow anything or anyone to stress you!! Good luck and Hod Bless! Please let me know how you are!
Thank you Asia, it's nice to meet you. I'm happy to be on this site, because I felt so lost and now I feel like people can understand what I'm going through. Asia I will also pray for you.
Thx hugs
I was diagnosis with GBS Oct. 2014. It only effected my legs, bowel and bladder incontinence. I have had 3 different diagnosis. I don’t think the doctors know. Only God is in control. Every test I had came back negative. I have had 6 MRI, 4 cat scan, 60 blood test, biopsy for cancer, all negative results, brain test , ultra sound, 2 Emg, etc. I still cannot walk yet but getting very strong, never lost anything above the waist. I was on muscle relaxers for 9 months once I got off of them the body start moving. What happen the first time you knew you were ready to start walking? What was your first symptom? I do not put my trust in no one but the good Lord. I don’t take any medicine and God is healing my body. I know it is a process one day at a time. I ask you to pray for my strength and a full recovery. I have been during volunteer work for 6 years and know God has another plan for me to help someone else. I am so proud of your recovery.
Hi Shirley, I'm so sorry you have been through so much. I'm not going through some of the things others are going through here, so until I know for sure I have GBS I'm not posting. I have an appointment 11/10 with neurologist. At the moment I got better since the hospital visit. Thank God. I hope that soon enough you will start feeling better too.
Hugs, Sonja.
Shirley Harvey said:
I was diagnosis with GBS Oct. 2014. It only effected my legs, bowel and bladder incontinence. I have had 3 different diagnosis. I don't think the doctors know. Only God is in control. Every test I had came back negative. I have had 6 MRI, 4 cat scan, 60 blood test, biopsy for cancer, all negative results, brain test , ultra sound, 2 Emg, etc. I still cannot walk yet but getting very strong, never lost anything above the waist. I was on muscle relaxers for 9 months once I got off of them the body start moving. What happen the first time you knew you were ready to start walking? What was your first symptom? I do not put my trust in no one but the good Lord. I don't take any medicine and God is healing my body. I know it is a process one day at a time. I ask you to pray for my strength and a full recovery. I have been during volunteer work for 6 years and know God has another plan for me to help someone else. I am so proud of your recovery.
Hi Asia,
I was like that once too. I had to put everything on hold so I could start to walk and talk again. I was angry but also stressed. Like I was trying to get back to normal as fast as possible. Having faith helped my situation. Take one day at a time and remember that stress is a normal part of life. It is how you deal with the stress that counts. I would only say that it will get better.