Long COVID
Severe → no benefitIll for 3 years
Severe long COVID heart pain and stomach problems stopped walking; no treatment helped
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 3 years
- Last post
- Apr 2024
In their words
- Condition: Long COVID
Severe heart pain for almost 3 years, can't walk.
In context ↗ - At worst: Severe
severe heart pain that doesn't let me walk
In context ↗ - Now: No benefit
I've gone downhill in the past 3 years.
In context ↗
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Nearly three years of severe, constant heart pain (8/10) stopped Nightjar 32774 walking, and years of anti-inflammatories, including colchicine, and immunosuppressants wrecked their stomach, so that even water hurt and they kept losing weight. Colchicine eased the heart pain but it returned when stopped; PPIs, H2 blockers and carafate failed or made the stomach worse, while nitrates and diltiazem didn't help the heart pain. They had gone downhill and could tolerate fewer medications.
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What they tried
Also tried
H2 blockers· No changeevery supplement and diet under the sun· No changecarafate· No changede-nol· No changeNitro· No changediltiazem· No changeanti-inflammatories· Worseexperimental immunosuppressants· Worsecolchicine· WorsePPIs· Worseomeprazole· Worselive yogurt, plant-based probiotic yogurts and sauerkraut juice· Worsesteamed cabbage and steamed carrots· WorseLansoprazole (Prevacid)· Not saidDexlansoprazole (Dexilant)· Not said
Their words about each treatment
- anti-inflammatories · Worse
The doctors put me on anti-inflammatories but years of those and experimental immunosuppressants ruined my stomach.
In context ↗ - experimental immunosuppressants · Worse
years of those and experimental immunosuppressants ruined my stomach
In context ↗ - colchicine · Worse
I wish I could keep taking it, it helped so much but it's what caused all my issues after prolonged daily use.
In context ↗ - PPIs · Worse
I started taking PPIs after the stomach pain began and noticed the pain was much worse almost immediately.
In context ↗ - omeprazole · Worse
I was ecstatic that my stomach was going to heal on omeprazole.
In context ↗ - H2 blockers · No change
I tried stomach protectors (PPIs), H2 blockers, and every supplement and diet under the sun, and my stomach won't let me eat properly anyways.
In context ↗ - every supplement and diet under the sun · No change
I've tried every treatment out there and I'm still not stable (as I can't tolerate meds and supplement anymore).
In context ↗ - carafate · No change
I tried carafate and de-nol (ordered from Europe, supposed to act like carafate) for a while without success. It actually hurts now when I take it.
In context ↗ - de-nol · No change
I tried carafate and de-nol (ordered from Europe, supposed to act like carafate) for a while without success.
In context ↗ - live yogurt, plant-based probiotic yogurts and sauerkraut juice · Worse
I tried live yogurt, Greek yogurts in very small amounts (one teaspoon) and it caused a bad flare up.
In context ↗ - steamed cabbage and steamed carrots · Worse
I even tried steamed cabbage and that was a really bad experience. Steamed carrots had the same reaction, even a few slices.
In context ↗ - Nitro · No change
Nitro and diltiazem didn't help.
In context ↗ - Lansoprazole (Prevacid) · Not said
Lansoprazole and Dexilant were the worst for my stomach pain, so painful!
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| about three years before April 2024 | severe heart pain began and they could not walkFor almost 3 years, I've been having severe heart pain that doesn't let me walk.In context ↗ | Severe |
| over a year before April 2024 | stomach ruined by anti-inflammatories and immunosuppressants, could not eat or drink without painyears of those and experimental immunosuppressants ruined my stomachIn context ↗ | Severe |
| 2024-04 | worse than before, constant heart pain at 8/10, cannot tolerate medications or supplementsMy heart pain is very constant now, holding at an 8/10, pretty brutal.In context ↗ | Severe |
Adverse events
- “The doctors put me on anti-inflammatories but years of those and experimental immunosuppressants ruined my stomach.” In context ↗ Gut side effects
- “years of those and experimental immunosuppressants ruined my stomach” In context ↗ Gut side effects
- Proton pump inhibitors (unspecified)“I started taking PPIs after the stomach pain began and noticed the pain was much worse almost immediately.” In context ↗ Gut side effects
- Lansoprazole (Prevacid), Dexlansoprazole (Dexilant)“Lansoprazole and Dexilant were the worst for my stomach pain, so painful!” In context ↗ Gut side effects
- Omeprazole (Prilosec)“on day 4 and 5, I started experiencing sharp heart pain about an hour after taking them and it progressed into the night” In context ↗ Made symptoms worse
- Proton pump inhibitors (unspecified)“I tried restarting the same PPIs at a lower dose and it wasn't enough to cover the stomach pain. The chest pain got worse again.” In context ↗ Made symptoms worse
- Colchicine“I never used to have any stomach issues before colchicine did me in” In context ↗ Gut side effects
- Probiotics and fermented foods“I tried live yogurt, Greek yogurts in very small amounts (one teaspoon) and it caused a bad flare up” In context ↗ Gut side effects
- Probiotics and fermented foods“I then tried plant based yogurts (also fortified with probiotics) and same reaction” In context ↗ Gut side effects
- Probiotics and fermented foods“I then decided to drink the juice of sauerkraut (one teaspoon) and it exploded again” In context ↗ Gut side effects
- Sucralfate (Carafate)“I tried carafate and de-nol (ordered from Europe, supposed to act like carafate) for a while without success. It actually hurts now when I take it.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Heart symptoms & palpitations
severe heart pain that doesn't let me walk
In context ↗ - Gut problems
I can't drink water without pain
In context ↗ - Sleep problems
It's affecting my sleep so much as well
In context ↗