If you are reading this, odds are that you, or someone you know, is afflicted by a very unpleasant disease. It is called Guillain-Barre Syndrome. GBS for short, or if you want a more complicated name, Acute Polyradiculoneuritis. Its symptoms are rapid onset muscle weakness, a feeling of pins and needles, or tingling, of the skin, tingling of the tongue, numbness, awkward and imprecise movements, collapsing when trying to sit down, and at this point, sever back pain. I write this because I had trouble finding accurate, precise, information about the disease when I had it in 2015. Medical information was abundant about the treatment and the survival rates, but I found little from the perspective of someone that suffered through it. With this I aim to remedy the problem for any other person that will be in my position. So if you’re out there, and you need some guidance, keep reading. You and about 30 thousands other people go through this every year.
Stage one: What’s happening?
Let’s begin with the most important thing possible. If you woke up this morning and felt some tingling in your limbs, a lack of ability to feel heat or cold in your hands, and maybe you’re experiencing some trouble walking, go to the hospital right now. Do not delay a moment. The sooner you’re in proper care, the better. Make no mistake. This isn’t something that will pass easily. This isn’t an extension of the sniffles you may have had a week ago, or a really weird stomach bug. It is a sign that your immune system has gone haywire while trying to fight an infection you recently had and is attacking your nervous system. Guillain-Barre Syndrome will kill you. I’m not trying to sound dramatic. Without treatment and proper care, you will be dead within two weeks of these symptoms showing up. The disease itself my not kill you, but a lot of other things may, as you are paralyzed by it.
Once you arrive at the hospital, you will be subjected to a number of tests. The only one that can conclusively diagnose it is a spinal tap. It is an unpleasant procedure, especially if the doctor botches the first one and you have to get two of them, which is what happened in my case. You will have a needle shoved into your spine, and you will feel. You’ll feel as though the needle is a meter long and is making its way down your feet. It is painful, but you must endure it without clenching your muscles. If you do, things will be worse. Try and keep as calm as possible, it will pass. It will continue to hurt as time passes, but since this disease will basically paralyze you, it won’t be as bad as if you were healthy. If you’ve already gone through this procedure, then you’re about to embark on a journey of pain, both physical and mental.
Stage two: How to minimize suffering
Two days in you won’t be able to properly walk anymore. Three days in you won’t be able to walk at all, and I’m going to say this as directly as possible. While you can still get to a bathroom, take a dump. You won’t be able to do this on your own for a month. Also, since you won’t be able to move, you have two options for the other thing. A catheter or a bottle. If you’ve never had a catheter before, it is painful, and if done incorrectly, will lead to a lot of bleeding and stinging. You’ll recover, but it is honestly more unpleasant than the spinal tap. You will maintain enough mobility to use a bedpan, though it will need to be emptied by someone else. Make friends with the people at the hospital, you’ll rely on them to not die or suffer, just a little advice. Bribes also help. I also hope you have medical insurance. This will cost you a lot.
Rest is important at this point, so have as much of it as possible. If you’re in a good hospital, you may get your own room. If you’re in something similar to what I was, you’ll be in a room with 5 other people, 2 of which will have a snoring problem. Ask someone to get you some ear plugs. Something else you will need is a distraction for your mind. As the disease progresses, you will be trapped within your own body with nothing but pain to focus on, pain and the odd noises you’ll sometimes hear. In my case, a lack of rest caused me to interpret the bubbling of the air filter system as whispers, and it was honestly very disturbing. A TV will let you focus other things, a crossword puzzle while you can still hold a pen can be good. A tablet would also be nice, a big one, because your fingers will have no accuracy for a phone. Don’t expect to play games on them, or write texts. Have some music, have some audio books with you, enough to last for a month. I recommend the Discworld books. Even reading will become difficult with time, due to the fever, so actual books or newspapers aren’t that useful in the long run.
I’m not entirely sure if this is a guarantee, or if it was because of the sever cold that triggered my condition, but there was fever. Fever to the point of judgment impairment, you will drift into regions of thought that are not pleasant. Without proper attention, you will break mentally, you will long for death. I am not kidding, you need someone with you to remind you that things will be alright when things go bad, and they may very well go bad. Most importantly, you need someone to actually help you when you are in pain, not someone that will just give you empty platitudes. So that’s why sometimes bribing the hospital staff is important. Though, if you’re in a country with actual humane medical facilities, this may not be needed. Your remaining senses will have some issues because of the fever and the condition itself. Your eyesight will be wavy. You’ll sometimes see objects moving even if they’re standing still. When you close your eyes, you’ll see blue outlines of your eyes, because of the fever. This will last for some time. As for hearing, like I said, you’ll start hearing voices.
You will be informed about what treatment options you have, and I’ll get into those soon, but there are a few more things you need to be aware of. You can’t sleep on your back all the time. It will begin to hurt, badly, to the point of agony. You must be moved from side to side a few times a day. About 5 days in, you won’t be able to do it on your own any more. The paralysis will have set in. And it won’t just cover your limbs. Your abdomen will be paralyzed, you won’t be able to sit up. Your face will as well. No joke. You will soon not be able to talk, not be able to move your mouth, your teeth will feel like they’re not yours, you’ll have no sensation in them. You won’t even be able to wink or properly close your eyes, they’ll always be slightly open. All thermal sense will have also left you, do not let people cover you in thick blankets over night. You won’t be able to feel your body temperature changing until its too late. And when you’re hot, you will be painfully hot. I generally preferred being a bit cold, rather than suffering the unbearable heat.
Depending on the quality of the hospital, these issues may not be sever in your case. You may have people to help you turn over, cool you down in the night and, very importantly, help you move your limbs. You need Kinetotherapy. You need massages, you need something to help your limbs remember how to move. It will make recovery a lot smoother and will alleviate the pain.
The bed you’re in is also very important. A bed that is too soft or too hard will give you problems. A bed that is too short is also not good, because your body expands and contracts over time. If you’ve got a bed that can bend, to give you a bit more elevation of your head, it will be very useful, especially for the short period when you are still able to feed yourself and drink water on your own.
Stage three: Food, drink and more suffering
It won’t last long. Within a week the part of your throat that separates your esophagus from your windpipe will falter. Eating then will cause food to go down the wrong path, and if you don’t have your windpipe aspirated quickly, you will have sever problems. It will come to the point where a single drop of water will cause you to cough constantly. In my case, I was still recovering from a cold and I had a nosebleed because of the fever, so I was in the situation of anemically coughing every few minutes for several days. I couldn’t even spit due to the paralysis, so I needed constant attention.
At this point, food and water will need to be give to you through a tube shoved through your nose. It is unpleasant, it is painful, and the first time it is inserted there is a chance it will make you vomit. If this happens, turn your head to one side quickly. I vomited twice while in hospital, once with the tube, and once because I didn’t feel well, to the point where I was blacking out and just thinking about a video game became too tiring. If you do not turn your head, then you will need aspiration very quickly, or you risk your lungs being filled with vomit.
When you have the tube inserted, make sure to take on water as often as you can. If you get dehydrated, you will suffer. Combined with a fever, it will feel like hell. You will break mentally, you will wish you were dead. That being said. All liquid must be ingested slowly, when your torso is elevated. If they start pumping tea or water into you while you’re lying down, you are at risk of dying. The liquid will run back up the esophagus and go into your windpipe. It has happened to me, it is horrible to feel like you can’t breath. My situation was aggravated by the fact that one of the nurses thought it would help me get more air if she opened a window… you know, because fluid in the lungs is cured by opening a window. I spent most of the week coughing up various bits of vomit, water and phlegm, again, very anemically and unable to actually spit the stuff out, or have enough dexterity to reach my own mouth with a napkin. And yet, I was still fortunate enough to be able to breath on my own.
This disease can progress to the point where it reaches your diaphragm. I did in my case, my breathing was weakened, for safety reasons I had an oxygen mask or those little tubes that go into your nose. It’s important that the air filtration is properly done, so that the air is clean, but there isn’t much humidity. In my case, there were visible water droplets forming in the mask, making breathing difficult. With the fever it felt like a sauna. And the tubes would sometimes force drops of water up my nose, leading to more coughing. The disease can progress to the point where your diaphragm is completely paralyzed. I was afraid of going to sleep some nights because I thought I’d die in my sleep, asphyxiated. People have died because of it. It affects the elderly most of all, so take care to always have a supply of air near you and that you are connected to oxygen saturation monitoring over night.
There will also come a point when any kind of food, even through the tube, will become unfeasible and you will be fed intravenously. Even so, your internal organs will continue to pump away until they too are paralyzed. So have an enema at least once a week. If you don’t, you will have severe problems later on, on account of all the poop will come out in large stones that don’t exactly fit where they’re supposed to, if you get my meaning. You will need assistance with that and it will be very painful. Also, after the disease has run its course, have an abdominal scan, your gallbladder may now be filled with stones and require surgery. Don’t worry, it’s a walk in the park compared to this diseases.
Stage four: The treatment
You may be spared some of this suffering if you get treatment soon. There are two ways to reduce the impact of this disease. One is Immunoglobulins. A rather expensive medication that will be administered through a needle in your veins over the course of a week. It is a lengthy treatment. You will also need constant IV with vitamins and other things, so expect to have needles shoved into every blood vessel. And I mean every one. By the time I was discharged from the hospital, they put me on pills only because I had no place left to shove a needle. Also expect daily blood tests, usually at 5AM.
Now, here’s the problem. For some reason, my doctor prescribed the wrong dosage, and then blamed me for it, that maybe I was too fat. Personally, I would shove that man out a window for the suffering I endured while at his hospital. Not a high window, just enough for him to get the message. The result was that the treatment did not work for me. So I was moved by my family to another hospital for another treatment and also because the first hospital nearly killed me with incompetence a few times.
The second treatment may sound a bit scary, and there are times when it can be, but it proved to be successful. And that is Plasmapheresis. It implies that you have two tubes tied into the arteries on one side of your neck. An intake of blood and an outlet for it. Then, every day for 5 days you will be connected to a machine that will drain away your blood, separate the white blood cells from the red blood cells, replace the white ones with donor ones, and feed them back into your system. It is a complicated process, needing hours to set up and put into application. It is also a bit unpleasant. Not just because you’ll have tube sticking out of you, that will make you fearful of turning your head… it’s OK, you can turn your head, just don’t put pressure on the tubes… but also because you will be literary strapped to a bed for a week. They need to monitor your condition constantly during this period, so some part of your body will have an automated blood pressure checker attached to it. Ask them for it to be a leg. You will never be able to rest if its your arm. A this point you have no power in your arms, any pressure put on it will hurt, and the blood pressure band is very painful. Mine was set to go off every 10 minutes. I begged them to put it to at least a half an hour so that I could get some sleep. They did it only after I agreed that if I died because of blood pressure, it was on me. At that point, I didn’t see death as being a bad thing.
Unlike the first treatment, you will begin to see results from this one after the third treatment. But, as I’ve said, it isn’t pleasant. The blood being circulated through you is a bit colder than yours, so you may need a blanket. Also, the act of changing your blood will cause you to have a sensation of vibration throughout your body. This may be amplified to the point where you will have problems staying conscious. That usually happens near the end of that days treatment. In sever cases, where they didn’t take the right precautions and administer the right medication before, you will have rashes or, worse, you will begin to shiver. You won’t be able to stop until they give you something for it. If you’ve been paralyzed for two weeks at this point, that shivering will give you sever muscle pain, especially in the back of your neck, it will be unbearable, you will need some kind of pain medication.
Plasmapheresis is also usually done in a clean room in the Intensive Care section of the hospital. It is the closest I hope that you will ever get to a torture chamber. White walls, white ceiling, neon lights that never shut off, no daylight, no one to talk to, nothing to keep your mind of the pain. Any sort of discomfort gets amplified a million times, you’ll even feel a twisted up bit of a bed sheet like its a steel spike driving itself into your flash. You won’t know if it’s day or night, you won’t know how long you’ve been there, due to noise from it being a busy place and your own condition, you won’t be able to rest much. And if the people there are inconsiderate, they may do things like leave doors open so the draft will make your head hurt, or ignore you when you obviously need help. Without distractions, a room like that will mentally break you. It’s like solitary confinement in a prison, but worse. You’re not just trapped in a room, you’re trapped on a bed, in your own body, barely able to lift a finger.
Stage five: The road to recovery
After any of these treatments, recuperation will not be instantaneous or miraculous, but you will be able to do little things, like move your feet again, at least slightly. If you still have a tube down your nose, it can now feel painful, or it may feel like it’s choking you if you lie down. It needs to be removed. It’s a good sign, it means you’re now able to feed yourself again and drink water. Just do go jugging down a whole bottle. On the last day of the treatment you should be able to eat and drink with no problems. If you still can’t then the treatment wasn’t 100% successful and you will need to have a talk with your doctor. It may be age related, I was 28 years old when it happened to me, and my youth was an important factor in my recovery. Some may not be as lucky.
During recovery you will be given medication to help you heal, like vitamin B, which will aid in rebuilding the damaged nerves. With any luck, you won’t have permanent nerve damage. In the next couple of days more of your muscles will recover. You’ll still feel the tingling of your skin, that won’t go away for another month. You will need to learn to walk again. A decent hospital will have someone to help you with that. A good one will have at least a room dedicated to exercising for people in similar conditions. Simply getting up and sitting on the bed will be hard at first, your back muscles are atrophied at this point. All your muscles are. You will first need to remember how to stand, so they’ll probably use walker to help you sustain your weight as you try and get up out of bed for the first time. It will be painful, your legs will feel like they’re about to explode. But in a few days, you will be taking your first steps. It’s going to be hard. That walker will be your friend for at least two weeks. Without it you won’t be able to get up out of bed. Also, you may think about going to the bathroom at some point. Remember, all your muscles are retrofitted, so when you sit down for the first time, you will feel a lot of pain. You’ll probably still use a bedpan until you can actually sit down without screaming.
Stage six: Back in the real world
From here you may be discharged if the hospital you’re in isn’t your local one. If it is, you may be kept around for physical recovery, which will involve treadmills, stationary bicycles, lifting very light weights and stairs. You will be terrified of stairs for some time. I still am. The tingling sensation will eventually subside, so will all the paralysis. So you may start feeling pain in new places from injuries you’ve sustained while in the hospital that just didn’t register back then. Usually pain in the joints, sore throat, nothing to be worried about. Don’t expect to be running any marathons soon. It will take probably a month and a half since your release from the hospital to recover enough so that walking two kilometers doesn’t make you feel like you… well, ran a marathon.
Lastly comes the part of infection and resurgence. Avoid getting any sort of infection. Avoid people that have the cold like they have the plague, avoid petting strange animals in case they bite you and have rabies, avoid eating something that looks like it may be spoiled, avoid anything that could make you sick for a while. There is a chance that the disease will come back. It may happen next year, it may happen in a decade, it may happen when you’re 80, but there is a chance it will come back. But at least then you will have had first hand experience of it and will be better prepared. And I hope this guide helped you in some way.
If you feel like things are bad, talk to someone. A good hospital will have a psychiatrist to help you through this and if you still don’t feel right even after you’re cured, try and get some help. Guillain–Barré syndrome takes a heavy toll on the mind as well. There will be the occasional nightmare, the fear that you’re getting it again, just because your foot fell asleep, or that there’s an aching sensation in your back. It’s something you’ll have to deal with in your own way. I spent a month without looking at a ceiling, I couldn’t. I’d go outside in the warm summer sun and just stay there as long as I could. I couldn’t stand to see another white featureless ceiling again. I wanted to see a cloud, a tree, anything that wasn’t a white ceiling. Also, you’ll have to adjust to sleeping normally again, on occasion you may fall asleep on an arm in such a way that you twist your shoulder or wrist. Normality will set in after some time. Having good health insurance will also improve your chances of full mental recovery, and a job that lets you have that kind of time off and still be there when you get back. It’s never nice you be informed you can’t be payed anymore while you’re still trying to figure out walking.
There is also a chance that you will not be fully cured. The disease may go into a different phase where some of the damage is permanent and it also sticks around, requiring periodic treatment. I’m afraid I can’t help you if it comes to that. My hell only lasted for a month.
I wish you a speedy recovery. Don’t let this get you down.