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Sleep, fatigue and a medication that also causes fatigue

Started 13 April 2026 · 16 replies · 110 hearts · read 1.2k times

OdileMontreal, CA · 13 April 2026
3 months ago

Something I have been sitting with: Sleep, fatigue and a medication that also causes fatigue Not looking for advice so much as other people's experience.

The logistics of this are defeating me more than the medicine is.

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.

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.

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.

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

37

NettieBarrow, UK
#1

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.

5

TychoLeiden, NL
#2

the opening post 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.

3

KikiFacilitatorGlasgow, UK
#3

Building on what the opening post wrote rather than answering the original question.

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.

13me too 9

NolwennRennes, FR
#4

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.

6

TorrinAberdeen, UK
#5

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

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

4

BrackenHexham, UK
#6

I did exactly the same and felt terrible about it. You have not done anything wrong.

4me too 4

AshSunderland, UK
#7

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

8

OrsolyaBudapest, HU
#8

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

7

SamPortland, OR
#9

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

7me too 8

BethanPontypridd, UK
#10

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

9

KezWigan, UK
#11

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

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.

9

SunnivaBodø, NO
#12

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

4

RillaAberdeen, UK
#13

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.

5

BoazHaarlem, NL
#14

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

7

KikiFacilitatorGlasgow, UK
#15

I want to slow this down a little. There are four different answers flying about and they are all somebody's real experience, which makes them true and not necessarily relevant to the person who asked.

14me too 3

RenataKraków, PL
#16

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.

5