That makes sense, as it seems to correlate with general symptom level, at least to some extent.
All told, I'd say there were about 20 years when I couldn't eat a main meal after lunchtime because gastric emptying takes so long in deep PEM. If I ate at 7pm it wouldn't happen until around 3am, and there's no chance of sleeping until the bloating and the painful pressure on the sphincter has eased. I had to be up at 6am for work.
Now it takes about four hours on average, because the compounded PEM I'd get when working is a lot less frequent. I can't help but be aware of emptying because it always makes me retch as it starts, but then the pressure against the sphincter quickly eases and it's only a few minutes before all the discomfort's faded.
I have been trying to get aggressive rest as much as possible but think I still may be Long-Term pem partly because I can't limit all activity-- recently I had to have three out of the house medical appointments in 2 weeks, though usually I avoid any out of the house travel /appointments/ etc.
I am wondering if anyone knows of any research, especially articles I might be able to print out, that talk about gastroparesis and me/cfs.
As I responded to
@Subtropical Island , I have had gastroparesis since age 14, when I had emergency surgery for a perforated pyloric ulcer due to all the medications I was taking for my juvenile rheumatoid arthritis and also due to my doctor's not believing that someone my age could have an ulcer. The general surgeon who did the surgery did a pyloroplasty and vagotomy, The latter because he knew that I would be on these meds long-term and would be prone to lots of acid production so he wanted to limit that. Obviously, this was before the discovery of h pylori. My gastroparesis wasn't discovered and diagnosed until 2 years later, when I had bleeding ulcers underneath a large bezoar of undigested food, which had to be treated via irrigation and suction over the period of 6 days to get it all out. At that point I was put on Reglan And a low residue diet. I had pretty severe CNS effects to Reglan, The worst being severe depression with an onset of about 20 minutes after taking the medication, but also what others above have described-- I always have called it a dystonic reaction but it sounds like there are better ways of describing it. I don't know all the science.
I have managed the gastroparesis over all these years fairly well, even having had to go off Reglan And just just manage with diet. But in the last 2 months, I've been going downhill, with frequent flares. For a while, I could do what I usually do and what others here do-- a day or two of just clear liquids until my gut was finally able to empty-- and then I could resume my normal diet.
A week and a half ago, I stopped tolerating any solid food, and about 10 days ago I stopped tolerating anything but clear liquids, and have increasingly tolerated less and less of those without getting a lot of stomach pain and nausea.
I was admitted to the hospital 5 days ago for dehydration and also to try to see what is going on. Of course, while it seems that some of the clinicians here have heard of me/ CFS, none of them have much of any understanding of it at all. I had a really really good admitting doctor over the weekend who was determined not to discharge me until I could demonstrate that I could handle eating food and that if I didn't get to that point she had other plans to send me too a tertiary hospital-- in my area, that would be Stanford or UCSF. Unfortunately, she is off this week and the doctors I have been seeing are just telling me that as soon as I can tolerate clear liquids they will send me home and have me follow up with my gastroenterologist whom I was already ready to fire because she is so slow to respond even to urgent situations and when she does respond, her responses are inadequate to the situation.
Anyway, at least I did get a good GI doctor to do an EGD yesterday, and while he said my stomach looked red and inflamed-- did a biopsy for h pylori and waiting on that-- my pylorus looked fine with plenty of opening. He did a dilation procedure anyway just given my symptoms. Since then, unlike the last time I had a dilation procedure, I have been very nauseous and the pain has been at least as bad as it was before. I can barely get down the clear liquids they bring me, although I did convince my really good doctor over the weekend to switch my IV to glucose so at least I can get some calories that way.
I expressed to the doctor this morning my and my husband's concern that even if I tolerate the clear liquids here, once I am home-- and I will certainly be in very bad pem after this hospitalization-- it will be very difficult for me to get myself enough nutrition and hydration and I worry that I will end up back in the same situation.
My doctor over the weekend said she would work with us and make sure that I was not being sent home without a really good plan in case things got worse. Current doctor, not really a plan.
I am just wondering if there is anything I can hand to these doctors to let them No in their language what I've been telling them, which is that my me/cfs is very possibly making my gastroparesis worse. I really don't want to be in a situation where I need TPM or a feeding tube.
If anyone has any thoughts on this, I would be so grateful. Feeling pretty frustrated and concerned.
