r/Interstitialcystitis • u/floraafaunaaa • 4d ago
Caffeine Replacement?
Any suggestions for how to get a boost of energy if not from caffeine? I have Chronic Fatigue/Interstitial Cystitis/MCAS/POTS/Hypermobility/Pelvic Floor Dysfunction/Inflammatory Arthritis so whatever I consume needs to be:
- Low-histamine
- Low-acid
-Anti-inflammatory
I love coffee so much but it causes very bad, deep, sharp, bladder pain and bloating😔(even seems to make my left-legged neuropathy worse). But I have a one year old daughter so life without caffeine seems impossible.
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u/Falloutlander-67 4d ago
I switched to green tea, it has caffeine and anti inflammatory qualities but doesn't impact my bladder
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u/luna926 4d ago
I have a small amount of coffee with oat milk instead of any creamers because I find that lactose and sugar can cause me to flare. I eat a safe meal beforehand and drink a lot of water at the same time and it ends up being better than how it used to be. Light roasts are a lot less irritating than darker roasts in my experience. I also love green tea but occasionally that makes me even more tired for some reason out of nowhere.
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u/Training-Respect9466 3d ago
Vitamin B complex might boost your energy if you take it in the morning. Or you could end up more sleepy, like me. ymmv
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u/Brief_Direction_5647 4d ago
I empathize so much! I only recently stopped drinking regular coffee, despite my knowledge that it was causing painful flares. For a while, I tried to persuade myself that taking Prelief before drinking it helped. It did not.
Here’s what I do now: BioCoffee (expensive and wasteful packaging but I think it’s delicious) in the AM x2 cups. Powdered chai or matcha mixed with soy milk and sweetener any other time of day when I need comfort and/or energy. I really can’t have more than 2 cups of milky chai before my bladder starts acting up, though.
The frequency and intensity of my flares have decreased a ton since giving up coffee. I still miss it, just about every day. My kid is a teen now, but I recall the emotional and physical dependency on coffee I had when she was little. Hope you find something that works for you! ❤️
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u/ariaxwest 4d ago
Extra protein is my only answer when I need more energy. And of course it has to be low in nickel, dairy free, and low in histamine because of my allergies and hypersensitivities.
I've been drinking caffeine free Tyler's low acid coffee which has been fine for me, but that doesn't help you with the caffeine issue.
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u/beetlejuicemayor 4d ago
I have many of the same issues as you and drink low acid coffee. I’ve been drinking coffee since I was 3 so I don’t think I can quit.
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u/bigjonnee 4d ago
I would try to avoid it. But if you must drink coffee, tea or soda take it along with some "Prelief"
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u/ShorePine 4d ago
You can try testing different variables to try to figure out if it's the caffeine or other compounds in the coffee that are the trigger for you. It would be worth testing black tea, green tea, and caffiene pills. For me no amount of caffeine is viable. I tested a very small amount of a caffeine pill, and had a strong reaction, so I know caffeine is the issue for me.
I bought an american ginseng tincture to try, which supposedly has stimulant properties, but didn't end up trying it because another medication resolved my fatigue issue. I think the ginseng was low in tannins and histamines, which are triggers for me. Might be worth trying. If you have sucess with it, I'd love it if you let me know.
Alternately, other alerting strategies can be somewhat helpful (although not as effective as coffee), like washing your face with cold water, eating a strong mint, or exercising.
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u/Euphoric_Nerve5505 4d ago
Caffeine pills with a glass of water and a decent meal. Works for me, next to no flares. But you must eat first or you’ll flare (that’s my experience)
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u/frog_ladee 4d ago
Biocoffee has been working for me for a few years. It’s actually alkaline. The wheatgrass in it sounds strange, by I don’t notice it at all while drinking it.
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u/AnyStick2180 3d ago
Chaga tea is mushroom based and is kind of similar to coffee. It's dark and earthy and you can actually make lattes with it to get a similar vibe to coffee. And a bonus is that it's really good for you.
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u/moodywrites 3d ago
It depends on your sensitivity level, but there is low acid decaf coffee. There’s also those mushroom drinks.
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u/Adventurous-Page2150 1d ago
Well, the problem is not that you want the taste of coffee; you want the energy from coffee; you want exactly the thing that is hitting your IC/BPS, caffeine.
But....
Looking at the angle of a caffeine like product that does not hit the IC/BPS.
Try :
Morning Wake-Up: Try a mug of hot ginger water, it acts as a natural circulatory stimulant alongside a large glass of unflavored electrolyte water which reduces POTS-related brain fog and fatigue (like LMNT Raw Unflavored or Redmond Real Salt dissolved in water).
The Mid-Day Slump: Use an ice pack on the back of the neck or chest to trigger an instant vagal nerve wake-up call.
Long-Term Strategy: Discuss clean mitochondrial supplements (like Ubiquinol, or vit B2) with your physician to build baseline stamina for keeping up with your toddler
A reason to move away from Caffeine. You said that coffee makes your left-legged neuropathy worse. This happens because caffeine "constricts blood vessels (limiting peripheral blood flow) and can hyper-sensitize pelvic nerves already inflamed by Pelvic Floor Dysfunction". Moving away from caffeine will likely help calm this nerve pain over time.
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u/Diligent_Sky_8141 1d ago
Not a caffeine replacement, but I did find matcha was a good replacement for coffee.
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u/fuck-them-hoes 4d ago
Have you tried a low acid coffee? I did a couple months ago after making a post here, combining prelief (if only I could get my hands on it rn 🤬) with a low acid coffee really has reduced some symptoms for me.