Effects of GBS over 2 years later
December 18, 2017 at 2:12 pm
I had GBS and was hospitalized for two weeks in August of 2015. Recovery took a long time. Now, 2 years and 4 months later, I have concerns that I can’t find a concrete answer on. I still experience muscle soreness and pain, in my knees and down to my feet, and in my forearms and hands. At times, my hands can be very shaky, especially in my fingers. Also when doing physical things that would make most normal people slightly sore if at all, I get sore and am in pain for multiple days. Lastly, I still get fatigued more easily and faster than I ever used to before GBS. It’s been over two years and I’m seriously wondering, will I ever be back to 100% physically? Working out used to be a huge part of my life and I really find it difficult to do that.
My immune system concerns me even more. I get sick so much more often than before GBS, and the virus/illness hits me much harder and lasts longer. This year, I have been sick at least 5 times where I have had to use sick days and not been able to make it to even a desk job. I used up all my sick days by November and am sick now but unable to stay home. How long and how badly could GBS have hurt my immune system to this day?
This is so frustrating! I have missed out on so many things in life and lost so many friends because of not being able to do things or be as active as I used to. Most my friends from the gym seem to have forgotten about me. None of them have a clue what this is like and think I’m lazy. I’ve been fighting depression too. Does this get better, will I ever be back to normal?
December 18, 2017 at 10:28 pm
It is normal to have residuals after GBS, and some residuals may be permanent. As time passes, the rate of recovery slows. After three years, you may not see further recovery. I think I still had a bit of a tremor at two years, but by three years it is barely noticeable, even if it is not completely normal.
I don’t understand the immune system complaint. I have not had that experience and have not heard of it. It could just be normal variation which has nothing to do with GBS, unless you are taking immune suppressants.
As for exercise, it is important to pace yourself according to what is comfortable now, not to what you used to do. Perhaps hand exercises using Theraputty will help your tremor.
December 19, 2017 at 4:21 am
Im sorry to hear that you lost friends over this. I’m 11 years old gbs surviver and for me I still get spasma and is more tierd then before gbs but that is common to most of us. This is long progress and some of us deal with it for the rest of our life. That’s fact. I say for me I’m thankful for I stand on my feet even though I have pain and numbness in theim. But be patient it could go in right way for it is only 2years since you was lay down of Gbs. Greetings from Iceland Helga
December 21, 2017 at 10:05 am
I had GBS in 1974 as 12 years old. Nothing was known, my only treatment was 8 years of physical, occupational therapy. I could never run or step on tip toes again. I walked with limp and unassisted. All was good until last year, my knees are worn out, giving me terrible instability, I fall often if any uneven ground etc. I use cane every day, and stairs up or down are tough! I’m 55 years old and am off work indefinitely and have long-term insurance. Thank God I have already put in 36 years and raised 2 daughters. I’ve been to more than dozen doctors, specialist, surgeon’s. The risk is too high for knee replacement, so now I’m looking at bracing for ankles, legs. If anyone would have told me years later, all would go down hill, I would of called them a liar. I was so active, worked 8 + hours, come home ride my bike on road for 15 miles, cut grass, you name it I did it! It’s still a hard pill to swallow, but I am accepting that I will do things differently and go on. For years I was never wanted to be labeled”disabled” so I pushed on and of course being a young teen girl, I never wanted to be different. Today I am disabled and it’s very noticeable. I don’t care about that, but I just never thought of this happening. I ride my spin bike 4 days a week at least , I want to keep my quads strong and when weather is nice, I will buy recumbent bike. I refuse to give up yet! I know that alot is not known about long term GBS, but I seriously would love to hear from ANYONE having GBS in 1980’s that DID NOT have plasma exchange OR hemoglobin transfusion/Ivg treatment. I would like to know how others are doing, or if it affected their knees, hips etc. Thanks for this opportunity to reach others and feel not alone👌
December 29, 2017 at 12:49 pm
I am relatively new to this website. I am replying to nairbear62.
I had GBS in 1972 when I was 21. I was fortunate in that I was living in Trenton, NJ when I became ill – and in less than 24 hours I was at the University of Pennsylvania’s Medical School Hospital – at the time, a central place on the East Coast for GBS patients. I DID NOT have plasma exchange OR hemoglobin transfusion/Ivg treatment. I was monitored closely; in a few hours, I had a tracheotomy in early evening – because I would not be able to breathe – which did occur around 2 AM. I was in the ICU for 3.5 weeks and in the hospital overall for 3 months. I was then able to go home and then go to a nearby facility for Physical Therapy (PT) for several months. This all occurred in March-August time period; I was able to go back to college in September, using braces. I graduated in December 1972.
I then went to graduate school and stopped using braces, even though I had severe foot drop in both feet (but nothing else!). I then worked at one job for 35 years and raised a family of 3 boys with my wife.
While I could not run anymore, I remained active – mainly hiking (and some swimming) and birdwatching.
In the last few years, I have noticed more problems with my balance – particularly, my ankles are less stable. After falling a few times and visits with a podiatrist, I have started using a small ankle brace one one ankle – which does give me more stability. I do have AFOs for both my feet – just in case – in the closet for now. My knees are fine, but I am walking less miles. And am getting more tired each day (but as a 67 year old, that is expected).
I have tried to find doctors or people with a long-term history of GBP but with no success – until I randomly found your note. I wonder if there are books/reports/publications about people who have had GBS for a long time – do you know of any? Or Doctors who have seen GBS patients for a long time?
Finally, for the other earlier comments: Be patient, positive and perseverant. It took some time (and still does) to “adapt” to the new you. As many other patients, I was very active physically and involved in many sports before GBS. After GBS, I adapted to a new lifestyle. So, take one step at a time (literally and figuratively) and enjoy life. As you will soon find out, there are worse things out there.
March 23, 2018 at 11:43 am
Hello, I wanna ask how do you go for hiking? With or without bracing? Eventhou I am having footdrops on my right side only but still difficult for me hiking without wearing AFO.
December 29, 2017 at 1:54 pm
To Reply to Birdalot,
Thanks so much for your input, it made me smile to know that you had GBS 2 years earlier and did so well after without having any of the latest treatments! I currently did not see neuroligist until I was in my early 50’s. Being 12 yrs old, I did not direct my care, my parents were my force and they did not know much, I went with the flow. I did not need a Trach as my breathing remained stable after 1 week. I am very happy for you to have full life with Children and completing your studies in college. Retired now?
I am pushing on but I guess I did not think this would happen…..I was active (as I could) for many years and to look at a step and wonder how I am going to tackle it, that is hard. But having waek ankle muscles & weak calf muscles, every step is like slam, I gather that is because my knee muscles are not doing what they used to. I to date have not found a Doctor that is well versed with GBS here in Michigan. Especially that could relate to our conditions in late state of treatments methods. I also know of no known book. I’m ready to write one, LOL! I do belong to Autoimmune publications so i can be aware of any studies or progress.
Do you have restless leg? Did you primarily walk on sides of your feet? Did you rely on stronger muscles to use while some muscles did not return fully? I am very happy to have you reply and very happy to know that you are doing well!
Also years ago I had awful callus on my feet from my walking style, but then I removed all callus’s and feet were looking pretty normal. Now since my knees have worn out, I am using again different muscles, callus are back along with spur bone on side of my right foot. Doctor’s say it is because that is where I am putting the pressure to be able to walk. I hope to get AFO/Braces to stop that.
Hope to hear from you soon and again THANK you for your reply!
December 30, 2017 at 11:39 pm
REPLY TO: nairbear62
You are the first person that I have known who has had it for almost as long as me! 🙂
I am retired and I live in Berkeley, CA and am looking for those “long-term GBS patients” in the Bay Area.
No restless leg or calluses for me. We are all different! 🙂
But the aging process is interesting. Hard to know what is aging versus something related to GBS – such a long time ago. But our bodies had to “adapt” to GBS – for me, foot drop has affected the rest of the body. Everyone knows when I am walking down the hall – as they hear my heavy footsteps. Also, my walking style has put lots of stress on feet and ankles (but knees are fine).
I do walk on my sides – my shoes show the different tread conditions. In fact, my podiatrist has told me to buy new shoes every year. Also, I wear hiking boots all of the time (started one month ago) – even in the house. And for hikes, I wear the ankle brace inside the boot.
I am experiencing more fatigue/heaviness in lower legs – I plan to see a neurologist in early January.
December 31, 2017 at 12:54 am
That is good that you are seeing a neurologist. When I started experiences of weakness I saw one in February and he did accessment of my strength, I saw him again Oct and No changes in muscle strength. Yay! So I had something to compare to!
So again I am comensating muscles when my knees became an issue. I also had experience of knee buckling, I use knee brace. That was very unsettling and painful. Please let me know how you make out at appt in Jan. Please stay in contact and it’s very nice to finally connect with a GBS patient that had none of the latest treatment. Talk soon!
January 6, 2018 at 7:48 pm
I saw my neurologist – the same one that I saw 2 years ago. He felt that everything was fine – my weakness in legs was probably due to my inactivity after I had fallen and fractured my fibula. My blood was tested for lots of stuff to see if there was anything else that might explain the fatigue. But the results were all positive. But he did suggest that I start using the AFOs – which I started today. They do make walking easier. So I will give it a try.
January 17, 2018 at 2:50 am
I saw my Dr. For EMG results and they were abnormal but that is normal. I am planning to see Dr. At center of excellence facility as last attempt to see if there is anything else I can do. For now I need to wear my braces on ankles. Especially in the snow, it’s like walking on Jello! I’m not sure what kind of shoes I will wear in summer but my Dr advised to have braces for all seasons. It’s less about my knees lately as far as pain etc. It’s very much about my ankles. I’ve also had swelling again in feet and calves. My Dr. Suggest that maybe the ligaments that surround the ankles are stretched and unable to aid in my stability. In past 42 years I know I’ve rolled my ankles numerous times, never falling. Maybe all those “saves” are used up. At home inside my home, I’ve been wearing my braces and tennis shoes. I feel very supportive and stable. Because when I’m wearing slippers or socks, my feet are constantly trying to roll on the sides. It’s so automatic, I have to look down and correct my stance. The ligaments and tendons in my knees must be giving out as well for it seemed to affect knees and then now ankles. My doctor also said that testing results did not show any GBS reoccurrence or any other sources to cause the instability. So one foot in front of the other I go, feeling very grateful 😊
January 17, 2018 at 12:11 pm
I was wondering about Center of Excellence facilities. Have you had any past experience with them?
I was in college in Vermont when I first contracted GBS. After graduating, I made a key decision: move to a warmer climate for graduate school – in Florida or California. So, I ended up in Berkeley – no snow nor ice. Very easy to get around. I tried cross-country skiing in the Sierras but could not stay upright. That was it for the snow for me – I let my boys and wife do the skiing while I stayed home.
I wore braces immediately after I got GBS. But after a few months, I did not need them. But now I do need them (after 46 years without them). I think there is general wear and tear as one gets older, and the way I walked probably led to more stress on legs and ankles (fortunately, not knees). When I am outside, I expect to wear braces in my tennis shoes all year round – with long pants. In the house, I currently don’t use braces – I am stable and I am not walking around a lot. But this may change …. one step at a time. 🙂
And while disappointed and somewhat frustrated with the turn of events, I am also grateful, especially when knowing that there are worse things out there – a few of my close friends have cancer, far worse than braces.
Let’s hope for a good 2018.
January 24, 2018 at 5:30 pm
So regarding issues I am having with my immune system and getting sick often over 2 years after GBS, could the fatigue be contributing to it now? Neurologists have told me the fatigue can linger years after GBS. Will that ever get better?
Or is it more the depression? Ever since GBS and losing my physical form and everything I worked so hard for, I have not been remotely close to as happy as I was before. I’ve been miserable. Being depressed for over 2 years can take its toll I suppose. Pills do not help either.
January 29, 2018 at 1:30 pm
Of course it’s the depression, why do I even ask? I give up on recovery. GBS ruined me permanently, I’ll never be the same and nothing will ever be fun again.
January 29, 2018 at 2:06 pm
I am sorry to hear about your depression. And I understand how they came about. Not knowing about the details (your age now and when you got GBS), it is hard to say something constructive. But do not lose hope. As noted above, I had GBS in 1972 when I was 21 and have had a wonderful life. It was not the life that I had imagined. For example, I participated in over a dozen sports before GBS. After GBS, I could not run, so those run-oriented sports were gone for me. I tried cross-country skiing, but that did not work (my weak ankles and foot drop in both feet did not help). So, I adapted to my new life. I focused on my work and family (even sharing a Nobel Peace Prize with Al Gore as a member of the Intergovernmental Panel on Climate Change). And I found a group of people enjoying birds – so I became an avid birder.
But some days are better than others. I would concentrate on the good days and focus on what makes you fulfilled and even happy. I know nothing about depression, but I hope you can overcome it through therapy, pills, exercise, family, etc. Just try to enjoy your new life – not what you had imagined, but it is what it is. Good luck!
January 29, 2018 at 4:21 pm
You mentioned pills but not which kind. I’d assume antidepressants? Have you had a prescription? Not to be nosy, but. Before GBS, I tried anti-ds for severe insomnia (twice)… and gained a lot of weight each time. While I was in the hospital, I was put on them again. (Not necessarily against my will because I was too out of it from being close-enough-to-death for me to remember that I never wanted to try them again and why.) So, because I could barely move much less exercise, I gained over 100 pounds. And I never felt any “better” or had improved sleep. All 3 times.
Not that you will, but some people gain a significant amount of weight on those medications.
Please don’t “give up on recovery”. Be as good as you can be, take a day/hour/afternoon (whatever) off once in a while, keep learning and trying.
January 30, 2018 at 12:45 pm
Yes, I was talking about antidepressants. I’ve tried a ton before. Most have not done anything, and a couple made it worse. I also have very high anxiety, and that seems to have gotten worse post GBS. I also used to be able to sleep through the night, but every since GBS, I wake up in the middle of the night almost every night. Sometimes I fall back asleep other times I’m up for hours.
Even on nights I do seem to get enough sleep, I always get tired more early in the day than I ever did before GBS. By the end of a work day at a non physical job, I am too tired to work out. So I have also gained a lot of weight too that I worry I can’t lose. I hope I can still improve and recover further because right now, I am just existing and making it through each day.
February 9, 2018 at 12:24 am
My first time posting, that I remember. I came down with GBS in late November after Thanksgiving 2013. I was was sent home from ER several time and when my dr at a clinic came back after Christmas vacation, on Dec 27th; he immediately called St. Joesephs hospital to tell them I was on my way. Went inpatient with inability to ambulate and some weakness all over. Spinal tap and EMG and rounds of IVIGs and steroids, I was sent home a week later. I had to wait 21 days for my neurologist follow up. My husband called the hospital and dr’s office everyday to see if I could come in earlier. I kept getting worse. I have a brand new walker I had to buy, because insurance didn’t pay. It’s still brand new. The last time I stood up was leaning on the wall on Christmas night; all I could do to have a normal Christmas. My husband (he went blind in 2012) carried me to my daughters car and made it to my appointment, which at that time I had gone completely paralyzed except for my head. I worked out almost everyday since I was 20 until that day, at 56 years old. I didn’t smoke or drink alcohol; not even over the counter medication. No meat, mostly vegetarian, some poultry, and very regular normal living, except my excellent physical condition. I was actually working on my six pack at the time. I won North America Woman’s Body Building Championship, the title, at 40 years old. I competed until I was around 44; and then was too busy with my daughter to devote that much time. So, because I was so healthy, was probably the reason I never lost the ability to breath, or shutting down of any other organs. I got home from the hospital in February. And six months later, I had 3/4ths of my thighs come back to life; thank the Lord. No more commode, I could slide on a wheel chair to the bathroom. my fingers can type; not all of them, but my face doesn’t fall in my cereal bowl anymore! I can’t sit up too long, or I’ll end up sleeping for and a half. I don’t even like to sleep; I don’t want to waste my time here on earth sleeping it away. My long distant friends have stayed. My close in proximity family had to distance themselves from me. That was a huge change i had to deal with. They couldn’t handle the amount of help I need I think. i probably come off too needy to those close to me, but I try to be like the hero else where. So, I’m pretty sure it was my fault. It’s okay. I have my husband, my daughter and our grandchild; two years old, adorable.
I’ve never stood up or walked again. I have all different pains, mostly in hands, forearms, biceps shoulders, calves, and toes. Miserable constant pain in fingers, like being run over by a car tire, and never wakes up, and inner pain, muscles cramps, like curling up like the wicked witch of the west. But I have a mediocre cocktail that this team of neurologists put together, at the Barrow Institute and I have never had my doses titrate up. Probably body not able to form a tolerance. That’s one good thing. I had three EMG’s and the last one this year showed no progress since 2014, so my neurologist took me off of my IVIGs because after 4 years he figured it wasn’t doing anything for me; but making me look like a pin cushion. But, sometimes I have PCP’s change my meds to lower the pain meds, and it throws everything off. It takes a couple weeks to get a tolerable amount of pain back in order. I keep my mind very busy. I learned how to make websites; and have fun with making graphics on computer and make post card stuff. Haven’t made any money yet, but you never know..lol.
I think the antidepressent I take (never had I taken any medication prior to GBS for this), it works well; it keeps me awake too, because the lyrica is strong and without the effexor, I fall out like a narcoleptic. I haven’t weighed myself since 2013, but I’m pretty sure I still weigh around 105; the antidepressents did not make me gain weight. My legs have shrunk up so much, they feel very light. Just recently, well after the ordeal with running out of my meds, I lost hearing in my left ear. I do have neuritis behind my right eye since the GBS. Now this left ear is driving me nuts; it sounds like a computer fan in my ear. This is a long post, so sorry. But, I will continue to try and love my family and life while I’m still here. I thank the Lord for all of his blessings as I am able to still breathe and feel alive, even in this bed I call my “wheel-house.” I dream of better days of course, but i love my family, and I’m glad I’m alive and with them.
January 30, 2018 at 4:43 pm
It’s better to eschew antidepressants, in my opinion. Weight gain can be a problem with reduced activity. One must adjust one’s diet to take that into account. You should try to do some exercises regularly, within your limits.
February 2, 2018 at 12:38 pm
Agree with GH. Avoid antidepressant meds. Avoid carbohydrates to excess. That’s hard because carbs, particularly sugar, make the body happy. You don’t have to focus on the inabilty to work out. Get up out of the chair and walk around the house. Increase the time gradually. Walk outside when you can. Get assistive devices if you need them
Most importantly. Be happy. You’ll have to forget what was and overlook what is. Put on a smile minute after minute and focus on something you love. The days and weeks will follow and you will feel better.
February 9, 2018 at 5:50 am
Have you been doing physical and occupational therapy? I had GBS when the ivig treatment was not available or even thought of. Did you have any blood transfusion? I too was paralysed up to neck, no tracheotomy. Resdiual weakness in the lower extremities. I have been active until 2016, it’s like everything is wore out. I have appointment at Wayne State University
February 9, 2018 at 5:56 am
P.s. Mcp, I had 8 years of PT and OT to strengthen muscles, but some never did return, but all in all, I was go getter and very active. Bike riding was my happy place! Since I have experience the problems with legs, no bike riding, boohoo. I do have spin bike I use to keep quads strong.
March 3, 2018 at 3:41 am
I had GBS in 2008. I wish I could remember dates and details but I am having issues with my memory. I am 48 years old and since my bout with GBS I have to admit my health is declining somewhat. GBS left me with nerve damage from head to foot and no reflexes. I have severe migraines now. I have stomach issues now. I have oversensitivity in my hands and feet to different materials that make me nauseated when I touch them. My depression was so bad after GBS I started vomiting uncontrollably. I still have a lot of pain I guess from the nerve damage. I am tired constantly. I cannot sleep more then a few hours at a time and that’s with narcotics. I have no interest in engaging in life anymore. I try but I am too tired to try. I sound so pathetic, I apologize. Noone understands what I am feeling or going through. I know family and friends think I am lazy and sickly. I don’t understand why so many with GBS recover fully and then ones like us don’t. Why is there not more being done for us. The groups of people who don’t fully recover from GBS/CIPD and continue to suffer need help too and the numbers continue to grow. Support groups are awesome but medical advice and help is needed. I have a great Neurologist but I know he does not understand what i am going through. He is trying, he helps to treat each new condition that seems to come up and treat my ongoing conditions. I am relieved to finally know I am not alone in my condition. For so long I thought I was the only one with these problems. Though don’t get me wrong I am so sorry any of you are suffering these issues. Thank you for sharing and letting people like me know we are not alone.
March 23, 2018 at 12:16 pm
I contracted GBS in early 1972 and resumed my senior year in college in Fall of 1972 – wearing braces. But by early 1973, I was no longer wearing braces. And I continued walking (and hiking) without braces until now. Since Feb. 2018, I have started wearing AFOs outside of the house (inside the house – no AFOs, since I don’t do too much walking inside the house). These are custom-made AFOs with hinges on each side, and they work very well when walking and hiking. I guess I will be wearing them for the rest of my life. I could go without them, but then run the risk of tripping and falling. And at this stage of my life, the doctors have said that I should avoid falling at all costs. So, another chapter in life.
June 8, 2018 at 5:03 am
hi Im ray , I have GBS and now 15 months later still have jelly feet and have to becarefull turning as 1 foot will stay straight making it almost a crash to ground effect , I still cant drive as reflexes are so slow but keep upbeat I have read a lot into it keep as fit as you can time heals all they say or adjust to what u have left over and make smart choices, I WAS 2 DAYS AWAY TO SEEKING COMPENSATION, but lawyers here in Australia got cold feet that we might loose , mine came from vaccinations of hep b and tetanus , government here don’t wont to pay out I was at work and had vaccinations under threat of do it or no job , so good luck
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