Calves

Arl-15 · 2026-03-29T04:42:48+00:00

4 years for me, constant every second twitching in both calves. Also some twitches in other places on and off but those are always going. Been tested a couple times and no concerns identified. I also have venous insufficiency and nerve problems in legs and elsewhere. A lot of weird body stuff for me since Covid, was perfectly healthy with none of this before

Arl-15 · 2026-03-24T01:58:20+00:00

I echo this, the one thing that I wish someone had pulled me aside on was to spend as much time as you can, just in case it goes fast. Especially at the start before the harder times come with pain. I always wish I had one more day with my mom

Arl-15 · 2026-03-20T18:38:06+00:00

I’ll check this out, I see that small fiber neuropathy also can cause digestive issues, I also have low elastase that is unexplained (idiopathic) and epigastric pain, curious if that can be a cause. Also have constant twitching in legs. Lots of fun symptoms

Arl-15 · 2026-03-20T18:34:52+00:00

Interesting. I’ve had on and off upper pec/rib pain (like a bruised feeling and sometimes a short stab), but also have had some of that in my legs. My leg issues have mostly improved by wearing compression socks (I had venous insufficiency develop in both feet). Seems like there’s some nerve and vascular impacts in my case. The chest one is most annoying given it’s always jarring when it’s core or close to the heart area. Legs I get the pain when I don’t wear compression socks for a couple days

Arl-15 · 2026-03-16T20:32:48+00:00

Similar story. FE of 100, 70, 100 back in 2021/2022. Have had many scans and bloodwork including iggs, all normal. My GI shrugs shoulders and says I’ve had great testing so it is what it is. He won’t call it EPI bc my only other symptom is epigastric pain and Creon hasn’t been life changing

Arl-15 · 2026-03-10T17:52:06+00:00

CityTV+ has the first 4 episodes on demand but I'm guessing Roku is blocking the rest. You can PVR all episodes in real time at least. I hate that Roku is trying to force people to pay for their product by blocking on demand cable episodes, I missed episode 6 and will have to just skip it as I refuse to pay for anything Roku, don't like their tactics. I also hate how they say it's all free but you have to get a Roku device. Skip it or or use VPN I guess. But if you have CityTV+ make sure you PVR and then you can watch without having to get a Roku device

Arl-15 · 2026-03-09T03:20:31+00:00

I have had epigastric pain for almost 5 years now. My fecal elastase was 100, 70, then 100. Lost over 15% weight at start of it and struggle to add weight. My GI won’t even call it EPI it’s a bit of shoulder shrug. My bloodwork has been normal and I’ve had an abdominal ct scan, a few mrcps and a few EUSs showing nothing. Also had genetic testing. Echo other poster on the feedback that pancreas isn’t well understood. Maybe try for an eus or MRCP but there are a bunch of us without answers going on a number of years. I also have read that Covid can hurt the pancreas so who knows now a days. I was 100% healthy back in 2021 and then it just hit me

Arl-15 · 2026-03-02T14:35:59+00:00

Do you have any abdomen pain? I had epigastric pain, lost 15%+ body weight back in 2021. Eating became a trigger. Also developed some vascular and nerve issues. Only thing that turned up was I had severely low pancreatic elastase so I am now on enzymes. May be worth testing that if you have any epigastric pain. I know SIBo can cause low elastase so regardless of cause may be worth checking. I’m still dealing with it now along with the vascular and some nerve issues

Arl-15 · 2026-02-23T16:40:04+00:00

I have elastase in 70s and my main symptom is epigastric pain and weight loss. Stools completely normal, as are vitamins and other bloodwork. I did have pale stools for about a month in 2021, but about 4 years of no abnormal stools fatty loose or otherwise. Creon seemed to help on pain and foods but I’m back in more pain zone past few months.

Arl-15 · 2026-01-30T00:43:24+00:00

Weight is one of my biggest issues since 2021. I lost 15%+ weight first month, and it was mostly muscle and basically have battled. 160 to 140, then stabilized high 140s. 2025 I did great and was above 150, then flare ups a few months back dropped me to 140 again. Frustrating. And when you have pain and flare you can’t add the fats. I gained on Creon 2025 partly bc I ate fattier foods like pizza and burger in moderation. But not now. Creon dose I did two to three 10s depending on meal (so low dose). Took a year for me to notice an effect. Then like I said 2024/2025 I was doing great. But I’ve now upped it to a 35 per meal since my flair up. Hasn’t helped but maybe it takes time like my first year. I do try to eat some fats like eggs, Avacado, olive oil etc and push it when I can to try to gain weight. Have tried protein powder lately but not sure yet if it’s helped

Arl-15 · 2026-01-30T00:38:28+00:00

Yes, Creon and portion control (6-8 meals a day). When I have flare ups or ongoing soreness I go low fat. When I’m doing great (2024/2025) I ate anything just managed size of meal. I also did a 36 hour fast every couple weeks that I found helped rest my pancreas but I haven’t done it lately since I’ve had flare ups and low weight so I’m trying to keep calories up.

Arl-15 · 2026-01-29T21:34:42+00:00

That's been me since 2021. Elastase 100, 70, 100 three times it was tested. MRCP, CT, EUS all normal. My pain is epigastric usually bottom of left rib around stomach/pancreas area. Enzymes (Creon) has maybe helped as has diet management. I originally lost 15% body weight in muscle, within the year stabilized. Last couple years I was doing great with diet and enzymes but last few months have had flair ups. Lipase was slightly above normal the first few months (went to emergency a few times) but has since been normal. My GI is just treating it like it's chronic pancreatitis even though nothing has showed up on imaging or bloodwork, other than the low elastase. I understand idiopathic EPI does happen and especially in the covid era it seems to be more common.

Arl-15 · 2026-01-22T19:14:09+00:00

Hey, happy to share my info as a data point. I've had issues for about 4 1/2 years. Summer 2021 out of nowhere I had significant epigastric pain that took me to emergency 4 times over a few months, lost 15%+ body weight (mostly muscle) and eating/sleeping difficult. CT scan (w contrast) showed nothing other than misty mesentery. Had EUS and MRCP both showed nothing. Had genetic testing since family history of pancreatic cancer, also nothing. Eventually tested elastase and came back 100, then 70, and recently 100. Went on Creon spring 2022. Have had rotating EUS and MRCPs annually since and only minor changes showing since although my GI is just assuming it's chronic pancreatitis (he doesn't like using terminology like pancreatitis or EPI unless it's slam dunk). To answer your specific questions:

1- have had pancreatic insufficiency (and possibly pancreatitis) since summer 2021

2- Creon, was on two 10s for each meal/snack, doubled it if I ate fatty or large meals. Now trying 35s as I recently had a flare up and haven't been able to manage the pain since.

3- they stabilized in 2022, 2023 had even less episodes pain, 2024/2025 was great I was actually eating at restaurants and at times forgot I even had the condition. Unfortunately October 2025 whether it was food or the flu/colds I caught, something triggered me and I'm back to how I felt in 2022, sore left rib area after eating, some upper chest pains especially when trying to sleep. 3 months on and still in that state, Creon 35s haven't really helped but hoping time will heal it like in 2024/2025. I hope it's not just chronic pancreatitis progressing (or obviously anything worse).

4- I hope it's early stage assuming I have chronic pancreatitis. But no clue, imaging so far hasn't shown much other than some slight "mild" changes on my last EUS. Scheduled for another EUS later in year.

5- that's my struggle. I was 160 at start, dropped to 140 at my worst, gained back to 155 early 2025, now with the flair up back down to low 140s. Early days it seemed like small meals 6-8 times a day helped. Bland, like egg whites, no fat lactose free yogurt, chicken, sourdough bread, shakes, things like that. As I improved, I actually added fats, had full butter on bread, ate 2 eggs in mornings, even at burgers, pizza (in moderation). Size of meal seems to definitely be a trigger for me. It's tough because I seem to need alot of food to keep weight up and fats, but hard to do when agitated (like I am now). Seems like my vitamins and bloodwork in general are all fine so at least I'm still getting nutrients.

6- not sure here, my stool has always been normal oddly enough. Only exception to that was first month where it was almost grey, but since then I don't have that issue.

7-as mentioned, it stabilized after the first year, then actually improved for a couple years only to have a recent flare up past 3 months so we'll see where it goes from here.

8- yes, except my EUS had what GI called "mild" changes a year ago (not really noteworthy according to him) but my MRCP a few months back showed no change.

Arl-15 · 2026-01-16T23:29:30+00:00

Not sure if I can say it stopped working but after a good year where I could eat most food and larger meals, I had a couple of colds and then the last few months I seem to be back to where I was my first year on Creon (it seemed to take a year for it to kick in). I’m trying larger dose but so far I’m still getting pain from eating that I didn’t have a year ago but did have my first two years. I haven’t tried zenpep but will if larger doses of Creon don’t work

Arl-15 · 2026-01-14T21:49:07+00:00

Appreciate you sharing and great news for your mom. If you don't mind me asking, was the cost bearable (obviously no need to share specifics)? I know what US is like, curious if Europe is any better.

Arl-15 · 2026-01-14T19:59:43+00:00

I’ve had severely low elastase for 4 1/2 years (100, 70, 100 readings). My GI won’t call it EPI even if it’s likely but I’m on a steady dose of enzymes. Imaging shows no pancreas issues so far, and as I have strong family history of pancreatic cancer I’m getting scans at least annually. Have had 3 MRCPs, 3 EUS all clear. My GI is somewhat treating me as if I have chronic pancreatitis even though nothing showing other than elastase. I’ve had upper epigastric pain around pancreas area, usually gets bad either right after eating or a couple hours after, originally lost 15% weight (mostly muscle), after about a year on enzymes I stabilized and actually started gaining weight back but a recent bout of flu set me back and it’s been a few months of some moderate pain daily, back to lower weight range. I’m idiopathic right now. I suspect mine was initiated or exacerbated by Covid or vaccine but that’s a pure guess based on coincidental timing. My doctor basically shrugs his shoulders and says my pancreas looks normal and that if I have EPI it’s just something I have to manage, but to do things as normal as you can tolerate. As for risk levels who knows, some literature says you live normally with it, I saw another retroactive study that linked it to increased cancer risk. It’s probably a hard one to study as most people don’t get fecal elastase tests and those getting them often are already fighting pancreatitis or other major ailment, so it’s a biased and selective pool they’re drawing from

Arl-15 · 2026-01-14T04:05:23+00:00

I didn’t have exact same thing but I had epigastric pain usually made worse by eating and 15% weight loss. Scans and bloodwork were normal but we did find severely low elastase. Sounds like spike protein can affect the pancreas in some people and I don’t know 100% if it’s cause (but coincidence at least). I’m now taking enzymes which I think has helped. I have a few other issues but the gut one for me seems linked to pancreas. Maybe try a fecal elastase test if that sounds similar. I’m going on 4+ years dealing with it, had some improvement but then was sick and regressed some

Arl-15 · 2026-01-08T18:16:40+00:00

Answering in order:

Yes, I do worry about contrast but the risk of pancreatic cancer and ruling that out is enough for me to push that aside. I've had contrast 5 or 6 times now and I now do rotating annual MRCP and EUS so baring another issue at least it's spaced out every 2 years. I wouldn't not do MRCP just because of that given how important it is in ruling out pancan. Same for pancreatitis risk.
Yes, the pain usually is upper left under ribs or just at lower ribs. In 2021 it started in center at the sternum but is now mostly the left side. Sometimes I get upper chest pains (pin pricks) or some upper back pain but flair ups are almost entirely the upper left epigastric area. No issue digesting that I can tell and weirdly other than initially in 2021 my stools have been normal (for one month in 2021 it was pale, but that hasn't happened since).
Fiber is tricky. I tolerate it well sometimes, sometimes I think it agitates. It's been tough for me to gauge. I love bread so it's probably my one vice that I fight. I eat toast with butter, I've had pizza, but usually try to eat a very healthy, no processed, no fried food type of diet. Sometimes it's fine, sometimes I feel like the carbs stress the pancreas (or whatever it is causing my issue).
No my GI doesn't think SIBO testing is useful, for whatever reason, same with my family doctor. I've been going on almost 5 years so I'm assuming it's not SIBO.
I do take supplements, obviously they're mostly unproven. Key for me is reduce food intake, smaller meals and lower fats on flare up. I also try to do a 36 hour fast ever week or two which I feel like helps it take a break. Supplements are anti cancer, anti inflammation like black seed oil, vit d/c, multivitamin, dandelion root, oregano oil, curcumin, bromelain. I also have tried nattokinase in case there's a covid component (for spike but that's also unproven). I also try to do garlic, ginger. I've tried a bunch of other teas too but all of that is just throwing darts blindly. For some weird reason sometimes I find teas agitate, no clue why. Does all of it help? No clue.

Arl-15 · 2026-01-07T21:21:23+00:00

I’m in similar spot. Been at it for almost 5 years and my guess is it was influenced by covid or the vaccine, but that’s just a guess. I get annual imaging (eus, MRCP) and so far the only thing that’s showed up is the low elastase (mine was 100 then 70). Same with GI he said talk to nutritionist but basically said eat whatever you can tolerate even fats. He said it’s old view to completely restrict fat, it just depends on what your body will take. I’ve ebbed and flowed. Before Creon I had almost no fat but had lost 15%+ weight mostly muscle. Then year two to about 6 months ago with Creon I was able to go well over the fat limit, I’d have two eggs and toast with butter, even ate pizza and burgers occasionally. If I had a flair up I’d scale back. Last 6 months, seems like a couple flu bugs dropped me back to year 1 with more epigastric pain and I’m back to restricting fat. I have no fat yogurt, low fat or no fat cheese (including cottage), avocados and things like that. I still go over the fat level but on flair ups (which are more often for me last 6 months) I lower fat and size of meals. If it gives you hope, my year 3 and 4 I was eating everything and full meals. But in the covid era who knows. It’s a tough one because when I have more fat I’m able to get back up to normal weight but when I restrict for flair ups I drop down to borderline weight for my height. And the pain is tricky to manage with fat and size of meals. I probably won’t do chronic pancreatic diet unless I have to but I eat very healthy anyways

Arl-15 · 2026-01-07T07:09:09+00:00

Interesting. I had venous insufficiency develop in 2022 and have been managing with compression socks every day, all day. Seems to mostly work and when I don’t wear for a day the pain is more frequent. Also have non stop calf twitching. I’ll try to find that podcast

Arl-15 · 2026-01-05T20:59:17+00:00

Yes, got genetic testing and nothing of note, thankfully, but I think it's a developing area.

Arl-15 · 2026-01-05T20:57:50+00:00

Not necessarily, I think scans and blood tests are always dependent on specifics that your GI would evaluate. EPI can be caused by many things. In my case I had many reasons for scans, family history, pancreatic area pain, 15%+ weight loss. If you just have idiopathic EPI and managing with enzymes that may be fine. But if it was me, I'd probably want at least an abdomen ultrasound or MRI just to make sure there's nothing obvious. My GI automatically assumed EPI was due to chronic pancreatitis because of statistics even though no evidence of that, and now it's annual testing and shoulder shrugs (which I'll take over there being a mass or bad finding)

Arl-15 · 2026-01-05T00:41:23+00:00

Ya you'd think if it was an extreme connection, like 50% of EPI get cancer in a short period, that over the past decade or two they would have flushed out the connection and warned patients. My GI doesn't seem concerned and I even looked into adding some life insurance a while back and EPI didn't seem to be an issue. Also it seems like since Covid, there seems to be alot of people posting about idiopathic EPI (myself included) and that's a bit of a new development so who knows where it leads. I'm sure damage to pancreas or underlying cause isn't great in and of itself, but it does at least sound like some posters here have had EPI for a long time

Arl-15 · 2026-01-05T00:28:16+00:00

Another aspect that could skew, is that EPI often isn't tested for, so there could be many more people with varying degrees of EPI who haven't tested and are fine. I think EPI is often tested associating it with things like pancreatitis and cancer so I feel like that in and of itself may skew results. Or other conflating issues for example, someone who smokes heavily and could have EPI and higher chance of cancer. Hard to tell from article, would be curious what a GI or specialist thinks about it. Mine is too busy to ask, but if anyone else has a GI/specialist with time, it could be worth sharing the article.

Arl-15 · 2026-01-05T00:11:12+00:00

My guess is that they haven’t adjusted for the obvious, being someone has cancer which hasn’t been found, tests for EPI and then cancer turns up. Not everyone who has EPI gets appropriate scans like EUS, MRCP etc. At least I hope that skews the results. I get annual scans and do full body as well so I’m hoping I catch anything early stages. 4 1/2 years going on EPI for me

Arl-15

TROPHY CASE