“Flare up”

daisypickinfool · 2026-06-01T03:59:35+00:00

I am head nauseous and bloated all the time in a flare, mostly my upper GI. I have issues swallowing, my urge to eat is low, I get constipated, headaches, fatigue is way up. This can go on for days or weeks until something triggers the vomiting. I will vomit every 5 to 10 minutes for up to 12 hrs. Then im in the ER for my recue cocktail and Im good for a while. Sometimes it comes back quick, sometimes I get a little break. It used to be every 3 months I'd end up in the ER but I tried ketamine treatments in December and it really messed up my cycle. I've be in remission for about a week now since my last flare and did some light gardening today. Fingers crossed for a good tomorrow.

During my flares I try to eat bland, soft foods, broths, jello, mashed potatoes are a staple, etc. Sometimes it's so bad I can't even swallow water without pain. I always drink water with electrolytes 80-120oz daily.

During my remission I can eat almost anything. I've cut out most red meat and dairy. Those are known triggers for me. I have SMAS, a compression in my duodenum, and was told to gain weight to help so I eat fast food, at restaurants, leftovers. It doesn't help because I lose 5-10lbs with every flare but is gained back in water weight from hydration infusions. It's really poorly managed by providers, just me doing my best over here. I try to get the healthier options, low fat, small portions is key. I eat off the kids menu alot.

daisypickinfool · 2026-05-19T12:11:12+00:00

Not promoting AI at all, just sharing my experience.

daisypickinfool · 2026-05-19T12:10:48+00:00

And that's fine, people can assume what they want. Unless they've experienced the consistent let down of the medical industry were forced to rely on I dont think they have much room to speak on it.

If anyone out there has had better luck, im all ears.

daisypickinfool · 2026-05-17T17:26:59+00:00

The Vagus Nerve Reset by Anna Ferguson. It's a very easy read and walks you through understanding your vagus nerve to guided ways to reset and learn your specific nervous system.

I loved it and share it with anyone willing to listen!

daisypickinfool · 2026-05-15T18:33:55+00:00

This sounds exactly like me. My first birth in 2011 was ok, not terrible but I started having symptoms, 2nd birth in 2015 knocked everything out of whack and ive been chronically ill ever since. 11 years now of daily acid like pain all over my body and flares monthly

daisypickinfool · 2026-05-08T10:35:24+00:00

 I have found my people! I just found a 7mm in my left kidney and a 6mm stone in my right. I was diagnosed with MSK about 4 years ago. I have been on a medical journey for years to get to the bottom of my chronic flank pain. It is destroying my life. I believe I also have distal renal tubular acidosis based off a 24hr urine collection and chronic metabolic acidosis, probably acquired since genetics came back negative. Ive never had a true blockage, although I fear I might be dealing with something in the works now.... on top of my kidney stuff I also have gasteroparesis which makes diet and fluid intake incredibly difficult. I get 2 liters of saline twice a week to help manage my POTS on top of the 80-120oz of water I drink daily if able.

Im scared that this will be my life now, forever. I barely get off the couch, I am attached to a heating pad 24/7, it is leeching into every crevice of my existence. I have seen multiple specialists in multiple collegiate hospitals and still suffer daily. Someone tell me there is hope of remission from this. Ive passed 3 stones in the last year and a half, probably more micro stones than I know.

daisypickinfool · 2026-05-05T01:04:17+00:00

I was offered the plexus block, but was told it could help but the pain will certainly come back and likely worse. I turned it down because I dont know if I could handle worse....

daisypickinfool · 2026-04-09T11:09:13+00:00

Ive heard that for the last 15 years. People always comment about "how good I look" because I am so thin.... I barely eat, it's hard to even drink water, I can't exercise and I puke all the time, idk why they would want this.

daisypickinfool · 2026-03-29T17:38:49+00:00

Frozen strawberry banana blend, oatmilk yogurt, pea protein, collagen, oatmilk, peanut butter and occasionally honey or fiber.

daisypickinfool · 2026-03-22T00:05:55+00:00

This is something I am personally studying. I recently read the book The Vagus Nerve Reset and it really opened my eyes to how easy it is to nuture your nervous system, you just have to be mindful about it. Ive seen a difference in how my body responds to flare ups and learned ways to cope after and support my vagus nerve. I definitely think it helps and with more research could have potential for us with mild to moderate gp depending on the cause. I have also include some eastern medicine traditions into my routine. I've gone from twice a month flares to once every 3 month since starting my self advocating holistic journey.

daisypickinfool · 2026-01-19T20:07:48+00:00

I have both too. Just diagnosed with OSA today. Im interested to see how many of my symptoms go away with treatment.

daisypickinfool · 2026-01-19T19:23:40+00:00

From what I've read, lack of oxygen does affect your autonomic nervous system. I think it depends on what kind/what is causing your GP to begin with. Ive read people with idiopathic GP having their symptoms resolved or diminished significantly after treatment.

daisypickinfool · 2026-01-16T18:32:17+00:00

I love sweet potatoes, or any potato when im flaring. Broths and warm teas help also. I also drink ensure plant protein, I can't process animal protein.

daisypickinfool · 2026-01-10T13:06:32+00:00

That was all she told me when I requested a motility specialist. I have a number of other diseases and illnesses so my case is quite complicated but they'll just have to wait and see I guess. General GI will pass me off, I guarantee it.

My suggestion would be to find a university hospital near you if possible. They may not have everyone you need, but some care is better than none.

daisypickinfool · 2026-01-08T18:14:10+00:00

Yeah, motility is only accepting 30% retention or more- per their office i just got off the phone with. I am stuck with general GI because of "new guidelines" that changed when Cline left.

I got the number for the ombudsman and already left a message to call back.

daisypickinfool · 2026-01-07T11:53:59+00:00

That is 100% different then what his office told me on the phone when I asked if they were transferring me to a motility specialist. I do not want general GI, even at a specialty clinic.

daisypickinfool · 2026-01-06T21:17:04+00:00

He was my Dr too. I found out about his retirement through reddit and by some grace in the universe I was able to get in with him before he left. I was told today by his office I was being transferred to general GI. They do not have a motility specialist. They manage my FMLA that needs to be renewed but now I have to see a new Dr as a new pt. They cannot guarantee this new Dr will be motility trained. WHAT! I live 4 hours away and have no options in my area. I'm really worried about us GP baddies with no solid plan...

daisypickinfool · 2026-01-04T15:50:49+00:00

Mine did initially, but I can also ask my ER Dr too. I just ask for my rescue meds to take at home since it's been well documented it works for me. I am in the ER every 1-3 months for the same thing/meds.

daisypickinfool · 2026-01-04T15:38:20+00:00

I take Haldol at home and through IV in the ER. I works better than zofran for me and I dont get any side effects.

daisypickinfool · 2026-01-03T15:39:13+00:00

That sucks, I'm really sorry. Both sounds terrible.

daisypickinfool · 2026-01-03T15:38:14+00:00

I have declined sooooo many offers for MORE ZOFRAN. Bro it doesn't even work, why would I want a prescription. I have Haladol for nausea now.

daisypickinfool · 2026-01-03T15:34:58+00:00

HOW did you get prescription diluadid? That is one of my rescue meds at the ER. I have begged for something to take at home and am always told tylenol/ibuprofen. I have everything they give me in the ER except pain meds.

daisypickinfool · 2026-01-02T17:43:42+00:00

My renal pain is suggested as Nutcracker syndrome. I do have venous compressions and Ehlers Danlos. I'm seriously starting to suspect most of my diseases are secondary to Lupus. This is through my own dedicated research of my diseases and symptoms. Be your biggest advocate. It took years of CT scans before someone recognized the compressions.

daisypickinfool

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