The Aftermath – My residuals from GBS and how they affect my life

My residuals from GBS and how they affect my life

It’s been 5 years since my life changing experience with Guillain-Barre syndrome. Given the severity of my case (only about 30% of GBS patients end up on a ventilator), I’m so fortunate to have recovered as well as I did, and I’m grateful that I can do all I can. I realize that I am where I am because of how hard I’ve worked (and I give myself a huge pat on the back for that), however, I’m also not ignorant to the fact that not everyone who has had GBS, is as able bodied as I am. I can push myself as much as my body allows it, and I definitely do, but I know that not everyone can. In some people’s experiences with GBS, the damage is just too severe, and their recovery is just not as complete as mine was. Some people have limitations, or have severe fatigue, and just can’t do certain things, no matter how hard they push themselves.

While I made a complete recovery from GBS, I still have some residuals that were left behind. Now some people may disagree with that statement and say that my recovery was not complete if I was left with residuals, but these things are all quite minor to me, and don’t affect my ability to live my life just as it was before. So to me, my recovery was complete.

People email and message me all the time, asking about my recovery, and I wanted to share all the different things I experience now from having GBS. Not everyone with GBS is left with these residuals, but I think a lot will be able to relate to most of these feelings, that are often hard to explain to others. These are my residuals in order of severity and how often they affect my life:

  • Neuropathy in my feet – This is probably the most common residual in GBS patients, and one that causes several different symptoms; including numbness, tingling and hypersensitivity. Neuropathy is a result of damage to the peripheral nerves, causing the nerves to incorrectly receive signals from the brain. Because of this, my feet ALWAYS feel numb and tingly, as if they are asleep. They are also extremely hypersensitive, so even the tiniest of touches are extremely painful to me. Stepping on a tiny pebble feels like I’ve stepped on the most painful piece of Lego ever; someone touching my foot with their fingertip feels like I’m being poked with a knife, and even walking on sand feels like walking on sharp rocks. I no longer enjoy pedicures, and I usually sleep with my feet outside out of the blankets, because the sheet rubbing up against them is uncomfortable. I often joke that I feel like a superhero with my superhuman ability to feel things on my feet. I also sometimes get strange sensations in them, like my foot has been electrocuted, or like a bug is crawling across them. While the numbness, tingling and hypersensitivity is constantly there and has been since GBS, the strange sensations are much more rare now. When I talk to other GBS patients, this is the residual that is brought up the most.
  • Weakness in my ankles – Another very common residual from GBS, is weakness in the ankles. Just like if you’ve rolled or sprained your ankle, they are just not as stable as before. Because of this, it’s very difficult for me to stand on the balls of my feet, I am unable to wear really high heels (although I can get away with shorter heels for short periods of time) and I have to be very careful when walking or running on uneven ground. The chance of me rolling my ankle is very high, although I have been VERY lucky and haven’t. I rarely run on grass and stick to cement. Because of that weakness, my ankles also can’t handle as much impact as they once could, and they ache and throb whenever I run on them two days in a row (which I don’t anymore). Another thing that this affects is my ability to stand for long periods of time. Standing still for more than a few minutes makes them start to ache as well, so I am usually trying to find somewhere to sit whenever I can. I can strengthen them by doing certain exercises in the gym; I just find it’s not worth the risk of hurting them, so I’ve accepted that my ankles are like this now.
  • Feeling temperature in my extremities – Another symptom of neuropathy is the way I incorrectly feel temperature in my hands and feet. In my feet, I can’t feel if they are hot or cold whatsoever. I ‘m able to walk barefoot on freezing cold snow, and put my feet in an extremely hot bath, without feeling a thing. While I am extra careful with heat (I NEVER get into a bath without feeling it with my arms first), I am pretty lazy when it comes to the cold. I can’t feel when my feet are freezing, so I rarely wear socks, and they are always as cold as ice. My family always gives me shit for never wearing socks in the winter. As for my hands, they are the opposite. While I don’t have any numbness or tingling in my hands like I do in my feet, my fingers are extremely hypersensitive to temperature. When I touch my fingers to snow, they burn for hours after as if I had frost bite. When I hold a hot coffee in my hands, they sting like I burnt myself, and the pain is severely exaggerated. That exaggeration in my hands is only with temperature, and not with touch.
  • My breathing and my voice – While this isn’t actually a residual of Guillain-Barre, it is a residual of being on a ventilator, and something that does affect me. Whether it was the breathing tube I had in my mouth for 10 days, or the tracheostomy tube I had in my throat for over 2 months, my vocal cords never came back as strong as before and I do believe that they were damaged at some point. My voice is hoarser and a lot lower than before, and my throat always feels a little scratchy; as if I am starting to get a cold. I can’t hit high notes anymore and screaming loudly is both difficult and painful. My breathing, I assume from breathing through a machine for so long, isn’t as strong as before either. Running up a flight of stairs leaves me breathless. Even though I do TONS of cardio and I can run faster than I’ve ran before, I still struggle with running for long periods of times. I usually run in short intervals because otherwise I am struggling to catch my breath.
  • Weak Hip Flexors – When you walk upstairs, you engage several different muscles, including your hip flexors (a word I learned in physio!). My hip flexors are just a little bit weaker than before, causing me to have to work a little bit harder to lift my leg when I go up stairs. I don’t notice it at all on smaller stair cases, but by the 6th or 7th step on longer ones, I can feel it getting harder, and I often catch my toe from not getting my leg high enough. This happens to me often at the gym on the Stairmaster.
  • Foot Drop – Because of the weakness in my feet leftover from GBS, I have a little bit of trouble lifting my toes up when I am walking and I have to use a little more force to lift them to ensure they don’t catch the ground. This used to be much more severe, and I used to have to wear AFOs (foot braces), but with the help of consistent exercise, they are MUCH better now. I’m almost not even aware of it anymore, except when I am tired that I find my toes dragging more often.
  • My concentration and memory – When I am having a conversation with someone, I often find myself struggling to find the word that I want to use. I will be in full conversation and know what I want to say, but I just can’t think of the word. This can be quite embarrassing in work settings, or with people I don’t know. I also lose my train of thought a lot, as my mind wanders more often, and I find my level of concentration is not where it used to be. My long term memory is still great but my short term memory is definitely lacking.
  • My balance – Partly because of my weak ankles, it is very hard for me to stand on one leg at a time. Every single time I put on pants, I have to stand with my back against a wall, or against the bed, otherwise I will lose my balance. Doing lunges and certain yoga moves is difficult for me, but I always try, and overtime it has improved.
  • Uneven strength/weakness – When my muscles regained their strength, they did not come back evenly whatsoever. Some of my muscles are much stronger on one side of my body, and although I do try to get them more even in the gym, some sides remain a lot weaker than the other, no matter what I do. My muscles also shake and vibrate whenever I exercise, as if I am pushing myself WAY too hard and they are at the point of fatigue, but they aren’t.
  • Body stiffness and muscle cramps – When I first got out of the hospital, every single time I woke up in the morning, I felt like an old man. I was so stiff and sore and felt like I had to warm up my body to be able to move around. I would also get very severe muscle cramps and charlie horses in my legs whenever I slept. With the help of regular exercise, I’ve found that both of these things have improved drastically. I still get a little sore when I sit for long periods of time, or when I haven’t worked out in a few days, but definitely not as bad as before.
  • Fatigue – I am very fortunate that I don’t deal with this as severely as some other patients, but this is one residual that I know is still there. I just don’t have the energy that I used to have (although getting older and having kids doesn’t help) and a lot of the time I would really just like to lie down. However the more active I am, the less fatigue I get, so I try to keep active every day.
  • Swallowing pills – Difficulty swallowing food and drinks can be a common problem after GBS, one that I am fortunate that I don’t deal with; however I do have problems swallowing pills. I think it has more to do with the fact that I used to have to swallow 20 pills at a time back in the hospital, and now the thought of taking one more pill in my life makes me gag! I’ve switched to gummy vitamins so I don’t have to take pills very often.
  • Weakness in my hands – probably the most minor of all my residuals, is that I find opening a water bottle or a jar requires a little more force than before. I can usually do it, but it’s more difficult, and I often just hand them off for someone else to open.
  • Aches in my feet – I left this for last because I deal with is so rarely now, but it is definitely the MOST painful of all my residuals. It’s also one of the most common residuals, and one that many GBS patients will take medication for. I call it “GBS feet”, and it is a severe, aching, throbbing pain I get from time to time in my feet. It’s caused by neuropathy, and the pain is similar to walking on your feet for way too long, but times a hundred. When I first got out of the hospital, this pain was constant and I was on a heavy dose of medication 3 times a day to lessen the severity. But at its worst, the pain was very difficult to manage and the medication didn’t really help. I spent many days lying on the couch with my feet in the air trying to take the pressure off of them, and cannabis was the only thing that I found alleviated the pain faster. Over time, the constant pain gradually went away, and I slowly came off the meds about 2 years later. Now, every few months or so, when I am overly tired or stressed, it will flare up (always at night time) and the pain is just as severe as before. I no longer take the medication (it takes several weeks to even kick in, and you must take 3 pills, 3 times a day for it to be effective) so I find that high pressure massage, rubbing them on a massage ball, lifting them high above my head, and cannabis, help. I’m very grateful to not have to deal with this often anymore.

 

I’m very fortunate that the majority of my residuals are minor and don’t affect my day to day life like some people’s do. Like I said before, some patients or doctors may say that my recovery was not complete, because I still have these weaknesses, and aches and pains. But I can walk without the help of anything, I am able to work full time, and I am able to do everything I could do before GBS (if not more), so I personally consider myself completely recovered. And I will never take that for granted and will continue doing what I am able to do.

Many people who had GBS deal with similar residuals, to varying degrees. Some residuals are more noticeable (they may have weakness and wear braces on their legs, or be in wheelchairs) but many things you wouldn’t even notice if you saw them walking down the street. But that doesn’t mean they aren’t there. Just because you can’t see someone’s pain or struggles, doesn’t mean it’s not real. Weakness, pain and fatigue can be severe after GBS, and can affect their ability to walk, to exercise, to drive, and to work. These residuals can have a very negative impact on people’s lives.

That being said, I do believe that people need to push themselves a little. Sure, I could certainly use my residuals as excuses; as reasons why I can’t exercise, but I don’t. I could have said there is no way I could exercise when I was in a wheelchair, but instead I sat in it and lifted dumbbells. When I did Insanity, I could have said I couldn’t do it because certain moves were too hard on my ankles, but instead I modified it, or did a different move. I could say that my ankles hurt when I run, so I can’t do it. Instead, I run every second day. It’s important to figure out what you are able to do, how long you can do it for, and try to push yourself a little more as time goes on! And you really have to make time for it and make it apart of your daily routine. Yes there are days I don’t want to work out, but I still do. Hell there are days that I don’t want to work out, and I DON’T, but I don’t beat myself up for it and I start over again the next day.

My residuals are a part of my life now, but I don’t let them hold me back. And neither should you. You need to figure out what you love to do, what you are able to do and DO IT! And don’t be afraid to push yourself! That’s the only way you are going to see what you are capable of!

For those of you that had GBS, do you deal with similar residuals? Are there any residuals that I didn’t mention that you deal with?

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14 Responses to The Aftermath – My residuals from GBS and how they affect my life

  1. Anonymous says:

    My sister sent your article to me and it brought back many memories of my brother,Rick was around 10 years old when he came down with GBS, luckily my sister who was training sly ill as a nurse was home and she realized that Rick was seriously ill. 4. He was rushed by ambulance to Sick Kids in Toronto where he was on a ventilator for a long time, he eventually was transferred to rehab as he could not walk at all, eventually had to have bones in his feet fused so that he could walk again, also left with nerve damage in hands. It was very hard on my Mom and Dad to have their only son go through this and unfortunately my father passed away just as my brother really needed his father to guide him in the right direction. Unfortunately my brother passed away in his sleep he had just turned 50. I miss him so much and your story just brought back many memories in his battle to recover from this illness

  2. VMC says:

    I had GBS Sept 27 2014 Completely down n out Im so glad to see residuals of others it is so helpful. Thank You All

  3. Andy Frew says:

    I am one year on and have made a fantastic recovery. I have many of the risiduals you describe, weak ankles, hip flexor, they ache from time to time some hypersensitivity on the soles of feet. Fatigue is there and so is the occasional “befuddlement”

  4. Ruwayda says:

    I’m glad you posted this. I saw your video of your progression. It was just unfathomable to me that you could do aerobic like exercises so soon after diagnosis. It looked as if you had made a “full recovery”. Non GBSers would think you’re completely “normal” but residuals can be very debilitating without the people around you knowing or understanding it. A lonely place to be.

  5. Roger says:

    I’m entering the 1oth year of my onset of GBS, which was diagnosed in October of 2006. I didn’t go on a vent, but did have breathing issues early on. My case turned out to be the bad form known as AMAN. It’s left me with a degenerative condition with no hope of recovery. I’m not depressed to talk about it, my faith has enabled me to deal with the reality of my condition. Most of the things you listed are applicable to me with drop foot, fatigue, and other things. I currently have a stoma as my bladder was eventually removed, and I faced other major health things as a result of my condition. The word run is not in my vocabulary, nor is walk fast. I wear a brace on my right foot, and had to learn how to drive with my left after close to 40 years of driving. The one thing I can honestly say is that my mind is better than ever as I force myself to read, learn, and keep my brain strong by playing hidden object games and other games of trivia or challenge types to help me stay intellectual! I say that I’m a very intelligent person, but that I’m just not that smart sometimes. Trying to do something I used to do, but knowing that I can’t do that anymore is one example. If I fall, most of the time it’s because I wasn’t thinking before I stepped. Simple things that can lead to harmful results is part of hanging on to my independence, but sometimes you just have to say when. My prayers are with all of you that have faced this or that know someone who has. If you have had success in your recovery to whatever extent, and can lead a life close to where you were before you became ill, be grateful for that! If you didn’t, use it to help someone else going through what you are, and stay positive and strong in interacting with those not so fortunate. You just might be the light that someone needs to see that they are not alone in this battle. I don’t want to get religious or political here to do any harm to someone’s beliefs, but I know for me, that if I didn’t have my faith, I couldn’t have lasted these ten years. Thanks, and God bless you all.

    • hollygerlach says:

      Thank you so much Roger and yes I agree, my faith helped me so much through my experience. I am impressed you learned how to drive with your left foot!! God bless you as well and thank you for your kind words.

  6. Cathy says:

    I admire your description of neuropathy since it so clear. After CIDP I had neuropathy. Hard for someone who has not experienced it to understand how it make a huge difference in your life. Mine is totally gone now and I rejoice every night when the sheet touch my toes.

  7. Gord Hira says:

    Hello Holly
    Over the years I have kept track of you by your posts as well other comments from people associated with you. Who could imagine 8 years has come and gone since my adventure began with GBS. I am very glad to see that you have come to grips with your residuals of GBS, as we all have them, in one form or another. It can be really hard for some people to adjust and accept that GBS can be quite a crippling phenomenon either physically, emotionally as well as mentally. If you recall we have exchanged a few emails over the years as well chatted a bit at the Calgary conference.

    We all share a commonalty, not only in that we all had GBS in one degree of seriousness or another but in that we all have similar if not identical residual effects to one degree or another, and that in a nutshell is the rub so to speak of GBS. Everyone who has contracted GBS pays the price in one way or the other. You have created a forum to express yourself and your situation while so so many others have no idea what to do or where to go for answers, and of this I have personal knowledge having lived through it a few years before your episode, remember. So I applaud you for your posts and for trying to get the information out there. Your post titled Aftermath in my opinion is a long time coming and is something most people with GBS have been looking for from you. So keep it coming kiddo don’t sell yourself short you have more to say so write it.
    Gord

  8. Jayne says:

    I agree with you about the pushing yourself to do as much as you can to get to the best post GBS you can be. Obviously that’s different for everyone, but I like to think of it this way…when GBS struck me down, I had no control over the circumstances I then found myself in. But once I was out of the coma, weaned off the vent, I realised then was the time to fight back. I too have residuals 2 years down the line, including fatigue, weakness of the voice and swallow muscles,and general neuropathic pain. But the most embarrassing for me is that I have tremors and shakes in my hands. This makes it difficult to do tasks that require dexterity …couldnt thread a needle for instance, and using keyboards and phones are difficult. The worst of it, however, is that people comment on it.I dont know why…do they think I’m particularly nervous, or an alcoholic or that I’ve got Parkinsons or MS? It really bothers me!

  9. Shannon Green says:

    I am 2 years out since GBS on-set and I have many residuals from GBS. I am so grateful you posted this. You are such an inspiration. I have ankle weakness, poor balance, numbness & tingly in all limbs but the feet and legs are the worst. My feet cause me so much pain & many kinds of pain such as skin crawling, feeling like my right foot has been crushed, feeling like I am walking on rocks. I can’t feel my feet which sounds crazy to say I can’t feel my feet but yet have excruciating pain at the same time. I also have severe fascia adhesions in my IT bands of the quad muscles in both legs that feel like hard marbles. They are very painful. Massage and Graston physical therapy techniques help in the short term but I am finding that the marble like knots come back. I am looking for a long term solution to managing these knots.

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