A peer support community, independent and not for sale. Since February 2024.

GLP CircleA peer support community

Research reading group

A small study that got enormous coverage and should not have

Started 23 December 2024 · 21 replies · 262 hearts · read 2.8k times

FabianBasel, CH · 23 December 2024
1.6 years ago

A small study that got enormous coverage and should not have — putting it in its own thread so it does not get lost in the check-in.

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

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.

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.

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

87

JunoBrighton, UK
#1

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.

5

SunilFacilitatorBirmingham, UK
#2

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

23me too 5

DevManchester, UK
#3

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

14

OskarWarsaw, PL
#4

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

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.

11

GilTel Aviv, IL
#5

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

11

HattieExeter, UK
#6

What the reply above described happened to me too, in a slightly different order.

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.

10

PrunellaBury St Edmunds, UK
#7

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

15me too 3

TarqWindsor, UK
#8

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

10

NilsUppsala, SE
#9

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?

10

PetuaKampala, UG
#10

What the reply above described happened to me too, in a slightly different order.

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

12

NadjaBelgrade, RS
#11

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

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.

6

RuthieLeicester, UK
#12

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

11

SaoirseKilkenny, IE
#13

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

10

PádraigGalway, IE
#14

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.

10me too 9

PamSouthport, UK
#15

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

15me too 5

JuniperMachynlleth, UK
#16

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

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.

12

AnnaAthens, GR
#17

What the reply above described happened to me too, in a slightly different order.

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

16

BeaDublin, IE
#18

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

9

GwilymCaernarfon, UK
#19

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

11

SunilFacilitatorBirmingham, UK
#20

Gently: you have apologised three times in a post where you have done nothing that requires an apology.

26me too 1

TheaBergen, NO
#21

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.

15