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A trend over three years beats any single result

Started 6 April 2026 · 17 replies · 118 hearts · read 1.1k times

MinaLisbon, PT · 6 April 2026
3 months ago

Something I have been sitting with: A trend over three years beats any single result Not looking for advice so much as other people's experience.

Evidence question. I would rather have an honest "we do not know" than a confident answer.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

Not looking for a plan. Just company and whatever anyone has found.

39

IvesPenzance, UK
#1

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.

6

MiraFacilitatorRotterdam, Netherlands
#2

the opening post said something I want to sit with for a second.

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.

15

FenEly, UK
#3

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

4

AshSunderland, UK
#4

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

6me too 5

GwynethAberdare, UK
#5

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

9me too 1

BirdieMargate, UK
#6

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.

8

BrunoMilan, IT
#7

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

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.

7

TarnKeswick, UK
#8

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

7

OskarWarsaw, PL
#9

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

4

TinukeManchester, UK
#10

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

3me too 6

MarkCoventry, UK
#11

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

6

GilTel Aviv, IL
#12

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.

3

TedIpswich, UK
#13

Gently disagreeing with the reply above, or rather adding the other half of it.

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.

8me too 5

VivLuton, UK
#14

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

6

BastianFreiburg, DE
#15

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?

7

MiraFacilitatorRotterdam, Netherlands
#16

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

I will leave this open for a few more days and then add it to the circle's resources, because the answers here are better than anything I would have written.

15

MarnieAyr, UK
#17

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

4