It will be a year for me in a couple of weeks and I still notice limitations in areas of my body where the nerves were hit so hard. I had to update my CPR certification yesterday and I struggled with my left hand in particular during the compressions. The nerves were shaking and the strength just wasn't there though I was luckily able to push through it to get re-certified. Since then my hand has been extremely weak somewhat numb and not working well. I have done this certification for years and never had to recover afterwards. I can also feel it in my neck/shoulder/back where I had so much trouble before. I feel pretty rough for an activity that previously never affected me. Maybe this is what they mean by a "new normal" or maybe I still need more time. I just wondered if anyone notices a strong limitation when they do something different after they thought an area had recovered pretty well.
well all I can say is get used to it. I don't mean to sound callous but I've been dealing with this crap for years. what I can say is that I have noticed some improvement at times. I try to work out at the gym and sometimes I overdo it and am wiped out the next day. my legs get tired from the elliptical. I used to be able to do 20 minutes no problem and I can still do that but the feeling is different now. legs feel dead at times or just heavy. soreness seems about the same but it lingers for an extra day or two. I will say that the first year after I had gb was a lot worse than what it is now. my feet were always numb and legs heavy. now its only part of the time. as for the rest I just notice being a little weaker or tiring out faster than what seems normal to me. I got gb in late 2011 so its been over three years of trying to figure out what works for me. my wife is a wellness advocate for doterra and I have found that some oils have worked at reducing pain in my feet and I do use them on a daily basis. I hope this helps and best of luck to you.
barry
For some reason it takes a long time to re-build muscle strength and stamina now. I'm about 3 years out, and my legs are still not as strong as they were pre-GBS, even though I exercise them regularly. I see progress, but very slowly, like over a period of months. So I keep at it. (It may also be coincidental to the fact that I'm getting older now as well. I'm 63 now, so that may be a factor, I don't know.)
So my advise is, be patient and keep working at it! Good luck!
Thank you for posting this - I feel the same way even though I am only 6 months post. "New normal" for me is getting bettter still but there are days when my legs feel heavy and I stumble a lot and my hands tingle more than other days. Hang in there - and congratulations on passing the CPR certification in spite of it all!
I am at 14 months. I am getting stronger all the time. I now bike for 2 hours at a clip in the hills, but the severe burning pain in arms, legs & back is at the worst it has ever been. At the beginning of April, I saw Dr. David Cornblath at Johns Hopkins. He is on the executive board of the GBS Society. To sum up the visit, he told me I am doing great for only one year, meaning that the burning pain (the nerves healing, regenerating) can take much longer than 1 year with GBS. The neurologists I saw in NY originally told me 6 months to a year & they did not know what they were talking about. Some people have mild cases & are fortunate enough to heal quickly. I am weaning myself off of neurontin for the 3rd time because I realize it is not helping. I have tried every other med out there with no relief. Just have to hang in till the nerves fully heal.
It is so good to hear that others struggle with the same problems! My neurologist told me I was "all better" when I passed my nerve conduction tests - but that is so far from the reality. It is 10 months out and I don't have near the strength nor stamina I had. My legs are the worst - still so wooden that I want to go back to using my cane because they don't feel strong, they feel so strange. As well, getting another illness puts me back so far. I am positive and grateful but it is helpful to not feel "nuts" because I am still far from recovered - still getting used to the new normal.
beautifulbird said:
It is so good to hear that others struggle with the same problems! My neurologist told me I was "all better" when I passed my nerve conduction tests - but that is so far from the reality. It is 10 months out and I don't have near the strength nor stamina I had. My legs are the worst - still so wooden that I want to go back to using my cane because they don't feel strong, they feel so strange. As well, getting another illness puts me back so far. I am positive and grateful but it is helpful to not feel "nuts" because I am still far from recovered - still getting used to the new normal.
I was seeing neurologists at North Shore- Long Island Jewish Hospital in New York, which is a teaching hospital & well renowned & they gave me all the wrong info, also after 2 EMG's. They just do not have extensive experience with GBS. If you can see someone from the GBS-CIDP Foundation as I finally did at Johns Hopkins you can get more realistic info, but nothing quells my constant burning pain. The only respite is when I lie down & do not move a muscle for a while that the pain subsides. It comes back immediately when I start moving.
If any doctor tells you that you will fully heal they are wrong. You never fully heal. I’m 11 years out and still have pain, tingling and weakness.
larry g said:
I was seeing neurologists at North Shore- Long Island Jewish Hospital in New York, which is a teaching hospital & well renowned & they gave me all the wrong info, also after 2 EMG’s. They just do not have extensive experience with GBS. If you can see someone from the GBS-CIDP Foundation as I finally did at Johns Hopkins you can get more realistic info, but nothing quells my constant burning pain. The only respite is when I lie down & do not move a muscle for a while that the pain subsides. It comes back immediately when I start moving.
Well, I really don't know what to say except "glad it's not just me". I am at my 3 yr. anniversary and really don't see me getting any better now. My feet and legs still feel heavy, tight, wooden, numbness, tingling. But, I still can walk albeit a very unsteady walk. Maybe part of it is my age - - now 74. And because of my age, I am more afraid that if I fall, I will break something so I still use my cane, my walker or reach out and touch objects to steady myself. I cannot hold out to stay on my feet for any length of time and use motorized carts when available for shopping which I don't do much of anymore. If it's a quick trip like Walgreen's, etc. I can use the shopping cart to help. But please, please don't give up!! I have come a long way from where I was and yes I have a new normal and a new life, but hey I'm still on this side of the grass and doing the things I can. Don't dwell on what you cannot do, but rather on what you can do and keep striving for a better day. And I agree, none of these doctors really know all they need to about GBS and every case seems to be different. I just really try very hard to avoid any illnesses for fear of having a set back.
Hugs & Blessings!
Kay
Hi everyone...i am new here...this is my story..
i contracted GB abt 8yrs ago now. A nurse told me it was not a 'live' virus (i have Ross River virus and RA and cannot be given a live virus..high risk for GB) and i believed her. She convinced me to have the injection as i had bn unwell and the rest is history...it ruined my life, transformed my life...rendering me paralysed for 4yrs and living in 'unspeakable' pain from the burning and i am still living with the repercussions of it...8yrs later.
I have to say...it is so nice to hear so many similar stories to mine...it has bn a lonely journey till now...for which there has bn little or no understanding or support coming from the doctors where i used to live (coastal small town). Such a cruel virus to get...sadly it was just on the news last night, another victim of the swine flu injection who is now paralysed...her life in shatters as mine was. The govt is saying the do not accept any connection to her immunisation she had and the paralysis but she knows and we know different! I wonder how many of us in Australia there are..including the ones we don't evn know about yet????
It takes just 24hrs for the numbing and tingling sensation in the feet and within 3days, the ascending paralysis as it is know as...has spread to your neck!!! That was my experience. I spent 4yrs in a wheelchair...lost my business, my home, my partner and my life that i knew. Hardest and cruelest years of my life but whilst i may never recover fully..i accept my limitations...and do the best that i can. I too passed the nerve conduction test and was told i have recovered...NOT!!! Far from it...8yrs later and i still have numb tingling in my toes, my legs still feel like lead balloons and i have to manually lift them to move them sometimes to get in and out of my car and difficult places. I can relate also to the person who said that 'lying down gives relief' and moving around flares it up...i can soooooo relate to that! I have RA as well and they get confused as to which is RA and which is GB but i can feel the difference...one is joints, the other is nerves/tendons and burning nerve pain. a 2 edge sword. I can only walk into the shops every few days (i pick my good days) and i know i have abt an hour before i have to turn back and head home...legs have clagged out and i can hardly walk. Anyone else get that? I find if i lay down or elevate my legs...things are much better until i have to move them then the pain and stiffness starts again. Very frustrating when you live alone...i quite often don't cook dinner cos by night i just haven't got it in my to withstand the pain and struggle in my legs.
So glad to be a part of this group and hopefully...together we will find ways to overcome the pain and restriction of movement that we have all come to know as the Guillian Barre virus!!!