Recovery: what happens after hospital

When you are discharged you are often handed a sentence that sounds like an ending. Something along the lines of: most recovery happens in the first six months, after that it is what it is.

The first half of that sentence is true. The second half is not.

How long does it actually take?

Recovery from GBS happens in layers, and the layers run at different speeds.

The first weeks: the inflammation stops. The attack is over. You are not improving yet, but you are no longer getting worse.

Months one to six: myelin regrows. This is the fastest phase, and this is genuinely where the largest gains sit. Damaged insulation around the nerve repairs relatively quickly.

Months six to three years: the nerve fibres regrow. If there is axonal damage as well, and for a large proportion of people there is, that fibre grows back at roughly one millimetre a day. Work out what that means for the distance from your lower back to your big toe: that is a matter of years, not months.

Throughout, and afterwards: your nervous system relearns. This is neuroplasticity. Your brain and spinal cord learn to drive the nerves you still have differently and more efficiently. This process has no end date. It responds to training.

The lasting symptoms nobody mentions

Officially recovered, with GBS, usually means you can walk unaided again. It does not mean you are who you were.

Fatigue is by far the most common lasting complaint and the most underestimated. It is not ordinary tiredness and it does not resolve with a lie-in. It is an exhaustion that drops on you out of proportion to what you did. It is documented in the literature, and it affects a large share of people, including those who otherwise recovered well.

Sensory changes. Numbness or tingling in feet and hands, often permanent to some degree. Awkward for balance and in the dark, because you feel less of where your feet are.

Nerve pain. Burning, stabbing, or hypersensitivity to touch. Responds poorly to ordinary painkillers and well to drugs designed for it.

Loss of fine strength. The coarse work comes back, but buttons, jars and standing for long periods do not.

Foot drop. The front of your foot does not lift properly when walking, so you trip. There is a simple solution in the form of a brace.

Your head. Anxiety, low mood, and sometimes genuine post-traumatic symptoms. You were completely paralysed and completely dependent, often in intensive care. That leaves marks. It is a normal response to something abnormal.

What does help

Training helps, and it has been studied. In Dutch research, a graded cycling programme in people with GBS and CIDP improved fitness, fatigue and quality of life. This is not alternative medicine, it is standard rehabilitation practice.

Pacing is the whole skill. The trap is the good day: you feel better, you do everything you had let slide, and you are flat for three days. Work at a level you could also sustain on a mediocre day, and increase it in small steps. On a schedule, not on feel.

Keep asking for rehabilitation. Physiotherapy, occupational therapy for your hands and your daily routine, and a rehabilitation physician who sees the whole picture. In year two as well.

Treat the pain. Nerve pain is treatable. “That comes with the territory” is not a treatment plan.

Rest and sleep are active treatment. Nerve repair happens while you sleep, not while you are awake. With this illness, rest is not laziness. It is therapy.

Work out your own starting point

There are validated models that estimate recovery from your age, your history and your muscle strength. They were developed in Rotterdam and are used worldwide.

They tell you what happened to groups of people like you. They do not tell you what will happen to you. I am the evidence that a poor estimate is not a verdict.

Use them as they are intended: as a starting point for a conversation, and as something to grow past.

Go to the recovery calculator