Hello, first post on the forums, and I'm posting on behalf my spouse who is experiencing severe ME.
The specific ME problems are severe PEM, being bed-bound for months now, inability to deal with screens for more than seconds at a time, no ability to read or research, daydreaming can also cause issues, head fills up quickly, phone conversations have to be limited to minutes.
She is at the moment able to feed herself, but food has to be easy to swallow with no chewing and at times very little chewing.
Apologies for the slightly longer post.
Description of the current situation
My spouse is experiencing heavy, hospitalizing crashes synchronised with her period with recovery only happening when menstruation bleeding starts, with IV in the meantime to help things along. We suspect that this is linked to thyroid problems and the severity has been worsening for the last 1.5 years with things taking a turn for the worse after a recent ear infection.
My spouse also has a serious issue with infections in general where they clear up, she'll be well for a few days and then experience a second bout of malaise that can resemble the illness, but not quite. I thought several times in the past that it had to do with me catching a separate illness and then passing it on to her, but this does not line up in retrospect. This second bout of malaise more recently heralds a crash.***
Everything below is after this ear infection and has been bed-bound for most of this time.
While the period is imminent (and often delayed), crashes sometimes occur rapidly after eating food, minutes after food is eaten (~3 min). This causes a rapid descent (day-by-day) worse and worse crashes (longer and harder), it begins with being able to eat normally, and day by day this ability is reduced to basically nothing, milliliters of water causing exhaustion that can persist for a few hours, but not longer than that so far. This has occurred while both getting better and worse ME-wise.
We are uncertain if the food/water intake is the cause or merely an indicator of the decline as it goes down. It gets better while not eating or drinking in this period. Rehydration via IV fluids (Hartman's) helps, which has been the only thing that helps so far and allows for slight day-by-day increases in food/water intake without crashing. Going off IV fluids too soon causes the decline to resume. My spouse has also a history of gastroparesis and the ME might be making it worse, but we're uncertain if this is relevant in this context.
It is slightly hard to tell when this period-induced crash is happening as the decline is not very apparent at first and may be written off as a day-to-day variation. We also do not know exactly at which point going off the IV fluids is safe, but it seems to be when the period properly starts.
First hospitalisation involved 10-11 days on IV fluids (Hartman's) prior to the period starting and symptoms easing. During this the hospital tried to cease giving IV fluids which resumed the crash roughly 6 days in, the decline resumed, and then ceased as the IV fluids were reintroduced.
Second hospitalisation involved roughly 72 hours on IV fluids prior to period starting and symptoms easing.
Patient data
Age: 33
Height: 163 cm
Weight: around 44-49 kg
Other medical issues:
Please let me know if you'd like any other information.
Thank you so, so much for reading.
The specific ME problems are severe PEM, being bed-bound for months now, inability to deal with screens for more than seconds at a time, no ability to read or research, daydreaming can also cause issues, head fills up quickly, phone conversations have to be limited to minutes.
She is at the moment able to feed herself, but food has to be easy to swallow with no chewing and at times very little chewing.
Apologies for the slightly longer post.
Description of the current situation
My spouse is experiencing heavy, hospitalizing crashes synchronised with her period with recovery only happening when menstruation bleeding starts, with IV in the meantime to help things along. We suspect that this is linked to thyroid problems and the severity has been worsening for the last 1.5 years with things taking a turn for the worse after a recent ear infection.
My spouse also has a serious issue with infections in general where they clear up, she'll be well for a few days and then experience a second bout of malaise that can resemble the illness, but not quite. I thought several times in the past that it had to do with me catching a separate illness and then passing it on to her, but this does not line up in retrospect. This second bout of malaise more recently heralds a crash.***
Everything below is after this ear infection and has been bed-bound for most of this time.
While the period is imminent (and often delayed), crashes sometimes occur rapidly after eating food, minutes after food is eaten (~3 min). This causes a rapid descent (day-by-day) worse and worse crashes (longer and harder), it begins with being able to eat normally, and day by day this ability is reduced to basically nothing, milliliters of water causing exhaustion that can persist for a few hours, but not longer than that so far. This has occurred while both getting better and worse ME-wise.
We are uncertain if the food/water intake is the cause or merely an indicator of the decline as it goes down. It gets better while not eating or drinking in this period. Rehydration via IV fluids (Hartman's) helps, which has been the only thing that helps so far and allows for slight day-by-day increases in food/water intake without crashing. Going off IV fluids too soon causes the decline to resume. My spouse has also a history of gastroparesis and the ME might be making it worse, but we're uncertain if this is relevant in this context.
It is slightly hard to tell when this period-induced crash is happening as the decline is not very apparent at first and may be written off as a day-to-day variation. We also do not know exactly at which point going off the IV fluids is safe, but it seems to be when the period properly starts.
First hospitalisation involved 10-11 days on IV fluids (Hartman's) prior to the period starting and symptoms easing. During this the hospital tried to cease giving IV fluids which resumed the crash roughly 6 days in, the decline resumed, and then ceased as the IV fluids were reintroduced.
Second hospitalisation involved roughly 72 hours on IV fluids prior to period starting and symptoms easing.
Patient data
Age: 33
Height: 163 cm
Weight: around 44-49 kg
Other medical issues:
- Anxiety
- POTS
- Dysautonomia
- Various former and ongoing intolerances to food - gluten/grain in the past - gastrointestinal, ongoing, but greatly lessened intolerance to a substance that exists in the cane sugar plant (but not sugar itself) - gatrointestinal and mental effects.
- Thyroid-problems, elevated reverse T3, medicated, roughly 5 weeks on latest adjusted dosage which seems to be helping
- Weirdness with immune system, see paragraph marked with ***
- We have attempted to regulate the period cycle, but both progesterone-based and low progesterone mixed contraceptive pills have caused immense fatigue and had to be stopped.
- Most important question: does anyone here know about crashes occurring after oral intake of food or water? We want to figure out if we're alone with this situation and what helped. EDIT: to specify, this can start minutes after swallowing.
- Likewise, does anyone know about periods causing problems to the point of hospitalisation?
- Does this sound like an issue with mast cells?
- Does anyone know about immense fatigue being caused by contraceptive pills in this situation?
Please let me know if you'd like any other information.
Thank you so, so much for reading.
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