Hello everyone
Has anyone else here been ‘diagnosed’ with ‘primary polydipsia’? Primary Polydipsia is thought of as a supposed psychological compulsion to drink excessive fluids in the absence of any physiological need. It is supposedly associated with severe mental ill-health, including schizophrenia.
This happened to me 18 months ago. I hospitalised myself following episodes of severe thirst and urination over the preceding months. When I say ‘severe’, I mean severe: my whole body screaming with thirst, 10 litres of urine in a night, no sleep, feeling like I would not make it to the morning light. These episodes only occurred during PEM. In the hospital, my blood sodium was found to be 116. Somehow I was still walking and talking, if disoriented.
I’m fairly sure there is a kind of polydipsia going on in ME/CFS, the mechanisms of which have not been mapped out yet, and that perhaps, at least some of the time, what has always been thought of as compulsive water drinking may be the excessive thirst ME/CFS somehow causes. In other words, a case of historical misdiagnosis because, as is so often the case, when the medical profession doesn't understand something yet, it resorts to the 'you're crazy' card.
The hospital normalised my blood sodium and it has stayed within normal ranges ever since. I’m very grateful for that. At the same time, I was treated like a mental case throughout (‘You are only in here because you were drinking so much water’, ‘You can’t go to the toilet as you’ll drink water behind our backs’). I even overheard the doctor and nursing staff laughing about their primary polydipsiac case in the hallway.
It was an awful week in the hospital. My sodium levels over-corrected themselves too quickly and, the doctors fearing cerebral swelling, said they had to be diluted again by IV drip. Bloods were taken every two hours morning and night. I was told they had never seen a case quite like me.
I went through episodes of severe thirst over the previous six months, probably around a dozen in all, each of which felt potentially life-threatening. They were a nightmare. And, for my trouble, at the end of it all I have a psychological compulsion to drink excessive fluids on my medical record. Nothing I tried to communicate about thirst in ME/CFS or downregulated fluid retention hormones was taken seriously. My discharge letter said ‘Patient admitted with self-diagnosed ME’ (which is untrue, I had been diagnosed two years prior).
Has anyone else experienced this ‘diagnosis’? What was your experience?
Has anyone else here been ‘diagnosed’ with ‘primary polydipsia’? Primary Polydipsia is thought of as a supposed psychological compulsion to drink excessive fluids in the absence of any physiological need. It is supposedly associated with severe mental ill-health, including schizophrenia.
This happened to me 18 months ago. I hospitalised myself following episodes of severe thirst and urination over the preceding months. When I say ‘severe’, I mean severe: my whole body screaming with thirst, 10 litres of urine in a night, no sleep, feeling like I would not make it to the morning light. These episodes only occurred during PEM. In the hospital, my blood sodium was found to be 116. Somehow I was still walking and talking, if disoriented.
I’m fairly sure there is a kind of polydipsia going on in ME/CFS, the mechanisms of which have not been mapped out yet, and that perhaps, at least some of the time, what has always been thought of as compulsive water drinking may be the excessive thirst ME/CFS somehow causes. In other words, a case of historical misdiagnosis because, as is so often the case, when the medical profession doesn't understand something yet, it resorts to the 'you're crazy' card.
The hospital normalised my blood sodium and it has stayed within normal ranges ever since. I’m very grateful for that. At the same time, I was treated like a mental case throughout (‘You are only in here because you were drinking so much water’, ‘You can’t go to the toilet as you’ll drink water behind our backs’). I even overheard the doctor and nursing staff laughing about their primary polydipsiac case in the hallway.
It was an awful week in the hospital. My sodium levels over-corrected themselves too quickly and, the doctors fearing cerebral swelling, said they had to be diluted again by IV drip. Bloods were taken every two hours morning and night. I was told they had never seen a case quite like me.
I went through episodes of severe thirst over the previous six months, probably around a dozen in all, each of which felt potentially life-threatening. They were a nightmare. And, for my trouble, at the end of it all I have a psychological compulsion to drink excessive fluids on my medical record. Nothing I tried to communicate about thirst in ME/CFS or downregulated fluid retention hormones was taken seriously. My discharge letter said ‘Patient admitted with self-diagnosed ME’ (which is untrue, I had been diagnosed two years prior).
Has anyone else experienced this ‘diagnosis’? What was your experience?
