nafione
Established Member
For the men with nocturia, desmopressin was shown to normalize testosterone levels over 12 weeks: https://pubmed.ncbi.nlm.nih.gov/24680454/
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Fact sheet drafting HERE! Fact sheet #4 - Management of severe and very severe ME/CFS - comments by 21st April please
Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Huhmar/Bragée/Polo
- Thread starter Dolphin
- Start date
Surely there has to be something scientifically intriguing in that symptom with Me/Cfs. The feeling of always being thirsty after consuming way more water than the normal amount. I know not everyone has that symptom though.
JellyBabyKid
Senior Member (Voting Rights)
I am hearing more and more about this and people struggling with it, and in pwLC, so there is definitely something worth investigating. Again.
Thank you for such an informative comment.
I have been reading about pituitary and/or hypothalamus damage as a result of an infection or autoimmune disease. Do you mind sharing if you have any signs of autoimmunity?
Are any of those who have had investigations or tried treatments based in the uk? I’ve always thought I had DI and in fact it’s only with being in another medication that it has calmed down slightly (but still get it in PEM).
I am terrified of the medical system though and have been thru so much plus always known I was being trapped by bad notes making it downright dangerous for me to do anything but hide and behave (I guess that’s why they continued to do it even if those choosing each time tell themselves they are just one cog in a machine and following norms given by others). So it’s knowing what’s involved.
Yet I had a head injury as a young child where 50 peers witnessed a very large heavy metal object land on the middle of the back of my head with significant force. Which got x rayed stitched and that was it, never noted on any GP records or school incident report. Who knows it might be nothing at all but.. And then another significant event in my mid-teens just before I became ill, where I had a huge blow to my abdomen from a football being shot at goal (by someone who shortly went on to play professional football) hitting me square on from just a few metres away. And everyone went silent as I was winded then I tried to be cool afterwards as they were shocked and no adults did anything. So no records.
I had a serious and rare illness over a decade ago that was also then not put on my records by that GP. Continually even when I added it back on in appointments. Which points to something potentially t-cell related and certainly said something else was going on as GP was told to investigate (but instead I was dumped into the cfs bucket and suggested to go to the gym). And on the drop down rewritten to some minor ailment.
But plenty of bs psychologising stuff and behavioural ideas that people who were in hindsight taking advantage types (inc teachers using pupils to do all the sports because they didn’t want to ask the other normal sports people to step up) were very happy to all suffocate my narrative when I got ill because god help anyone thinking oops I played my part in not giving that person a break and changing rather than carrying on regardless whilst inferring ‘something else’.
So the bravery it would take decades on of people like that collecting and getting away with it, of me trying to walk in and get the facts above noted without someone assuming I’m talking about ‘that time a hit my head slightly’ but ‘being over anxious’ would be huge. And any opportunity that can change the outcome of one’s life from ‘having anything’ to not has now psssed as I had to hide to save my own life (because there was always medical people who at any mention would threaten with ‘go for a walk’ sing song and I felt me not pretending I was fine and hiding would lead to me being locked up). But my future doesn’t add up even if I have to not say it out loud to get thru the day.
Going to any neurologist would terrify me so much for example ). It would feel like risking my life and so I’d be so terrified I’d pre-empt someone to think it was anxiety etc so an appointment would become a self-fulfilling prophecy except with incredible luck of the right person who could see thru it all.
But on the other hand I’ve been a thirsty child teenager and adult and had raised eyebrows at impromptu urine samples for other things. And am stuck flat on my back a lot. Well I can’t do anything and will have no one in the future. So…
I’m guessing I’d need to change the med I’m currently on to test and I’ve no idea who I could end up with that would pass the just going down the convenient but untrue bs route.
And to boot I don’t have spare energy for schlepping to appointments unless there will be benefit worth the impact of travel etc. And a lot of admin and work locally to get there (referred) with notes that make sense because I’d have to do a lot of work getting GP up to speed tiny bit by tiny bit testing the water on all the above and hoping I’m believed etc.
I am terrified of the medical system though and have been thru so much plus always known I was being trapped by bad notes making it downright dangerous for me to do anything but hide and behave (I guess that’s why they continued to do it even if those choosing each time tell themselves they are just one cog in a machine and following norms given by others). So it’s knowing what’s involved.
Yet I had a head injury as a young child where 50 peers witnessed a very large heavy metal object land on the middle of the back of my head with significant force. Which got x rayed stitched and that was it, never noted on any GP records or school incident report. Who knows it might be nothing at all but.. And then another significant event in my mid-teens just before I became ill, where I had a huge blow to my abdomen from a football being shot at goal (by someone who shortly went on to play professional football) hitting me square on from just a few metres away. And everyone went silent as I was winded then I tried to be cool afterwards as they were shocked and no adults did anything. So no records.
I had a serious and rare illness over a decade ago that was also then not put on my records by that GP. Continually even when I added it back on in appointments. Which points to something potentially t-cell related and certainly said something else was going on as GP was told to investigate (but instead I was dumped into the cfs bucket and suggested to go to the gym). And on the drop down rewritten to some minor ailment.
But plenty of bs psychologising stuff and behavioural ideas that people who were in hindsight taking advantage types (inc teachers using pupils to do all the sports because they didn’t want to ask the other normal sports people to step up) were very happy to all suffocate my narrative when I got ill because god help anyone thinking oops I played my part in not giving that person a break and changing rather than carrying on regardless whilst inferring ‘something else’.
So the bravery it would take decades on of people like that collecting and getting away with it, of me trying to walk in and get the facts above noted without someone assuming I’m talking about ‘that time a hit my head slightly’ but ‘being over anxious’ would be huge. And any opportunity that can change the outcome of one’s life from ‘having anything’ to not has now psssed as I had to hide to save my own life (because there was always medical people who at any mention would threaten with ‘go for a walk’ sing song and I felt me not pretending I was fine and hiding would lead to me being locked up). But my future doesn’t add up even if I have to not say it out loud to get thru the day.
Going to any neurologist would terrify me so much for example ). It would feel like risking my life and so I’d be so terrified I’d pre-empt someone to think it was anxiety etc so an appointment would become a self-fulfilling prophecy except with incredible luck of the right person who could see thru it all.
But on the other hand I’ve been a thirsty child teenager and adult and had raised eyebrows at impromptu urine samples for other things. And am stuck flat on my back a lot. Well I can’t do anything and will have no one in the future. So…
I’m guessing I’d need to change the med I’m currently on to test and I’ve no idea who I could end up with that would pass the just going down the convenient but untrue bs route.
And to boot I don’t have spare energy for schlepping to appointments unless there will be benefit worth the impact of travel etc. And a lot of admin and work locally to get there (referred) with notes that make sense because I’d have to do a lot of work getting GP up to speed tiny bit by tiny bit testing the water on all the above and hoping I’m believed etc.