What "sensitive to steps" actually feels like

Started 17 February 2025 · 20 replies · 199 hearts · read 2.7k times

GwynethAberdare, UK · 17 February 2025

1.4 years ago

Something I have been sitting with: What "sensitive to steps" actually feels like Not looking for advice so much as other people's experience.

I have been reading here for a few weeks and have not posted, so this is me posting.

What I would find most useful is not advice. It is somebody describing what their version of this was, and how long it went on for.

I am aware some of this may be nothing. I would still like to know whether other people have had it, because I have spent a fortnight assuming I am the only one.

Anyway. Thank you for reading this far. Any experience gratefully received, and I promise to come back and say what happened.

GwendaEbbw Vale, UK

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

DoraUtrecht, NL

What the opening post described happened to me too, in a slightly different order.

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.

FlorrieBlackburn, UK

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

TomásFacilitatorLisbon, Portugal

Before anyone offers a remedy: what has been described here is on the list of things that need a clinician today rather than a thread. I am going to be firm about that, kindly.

BrammyBelfast, NI

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

6me too 9

BroganCumbernauld, UK

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

HeddaCopenhagen, DK

the reply above said something I want to sit with for a second.

Please do not read the comments under news articles about this. I lost a fortnight to that.

GwennoPwllheli, UK

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

IdrisCardiff, UK

the reply above — yes, and the bit that took me longest to accept was the next part.

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

HalCambridge, UK

#10

What helped was lowering my own expectations of the week rather than trying to hold the week together.

10me too 5

GwynethAberdare, UK

#11

Yes to the burping. It is real, it is unbeautiful, and it does settle.

GwendaEbbw Vale, UK

#12

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

DoraUtrecht, NL

#13

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

FlorrieBlackburn, UK

#14

the reply above said something I want to sit with for a second.

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

BevanSwansea, UK

#15

Reading the reply above, I recognised more of that than I expected to.

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

BrammyBelfast, NI

#16

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

BroganCumbernauld, UK

#17

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

13me too 3

HeddaCopenhagen, DK

#18

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

TomásFacilitatorLisbon, Portugal

#19

Building on what the reply above wrote rather than answering the original question.

Thank you for writing this. I am not going to add information to it. I am going to say that what you have described is very common and very rarely said out loud.

23me too 7

IdrisCardiff, UK

#20

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.