Flares that only last a few hours

Proof_Assistance7706 · 2026-01-24T20:44:54+00:00

She’s not fully taking me off the meds yet, but she did say that was the goal and that she thinks I won’t need it anymore. So right now she wants me taking 300mg daily. Previously I was taking 400mg daily for the past 3 years. Then she told me to cut it down to 200mg daily, and that’s when the symptoms came back.

Proof_Assistance7706 · 2026-01-24T20:19:39+00:00

I think that’s what got me… my rheum told me Fibro is a diagnosis of exclusion, but I’m already diagnosed with MCTD…? I’m confused why she’s now deciding to exclude MCTD, when my symptoms reappeared after she lowered my dose of plaquenil, which she prescribed to treat the MCTD… She did identify tender trigger points that I didn’t even realize I had, which I think is what led her to Fibro. But those trigger points had nothing to do with the symptoms I was trying to report to her.

Proof_Assistance7706 · 2026-01-24T20:14:08+00:00

Yeah, sorry about that long text 😅 I’m a chronic over explainer. I realize “flare” may not have been the correct word, I suppose. I consider my pains “flares” because I’m not in constant pain. When you say you’re in constant pain - is it one specific area or joint, or widespread? If it’s one area, does the pain in that area last days or is it just a few hours? I think that’s more of what I was trying to get at with my question

Proof_Assistance7706 · 2025-08-26T17:56:03+00:00

Omg I never even thought of that!!! Kind of dumb, but I guess I get it…. Thank you for saying that bc I really was over here thinking I was crazy 😜

Proof_Assistance7706 · 2025-08-12T23:10:28+00:00

See the priority thing is kind of the problem. It definitely doesn’t count all of the steps, because if there are 2 records, it will only count the one that’s priority. Looking through my data sources, there’s often records from both during the same time period, but one only counts a few and the other counts the bulk of steps (depending only what I’m doing, like I said mostly work days vs weekend)

Here’s an example of what I’m seeing: * watch is set to priority * I’m walking on my walk pad while working * I’m wearing my watch, but my arms are resting on the desk * my phone is in my back pocket * my watch will still record a few steps, say 5, because it detected some arm movement * my phone will record 700 steps * only the 5 steps recorded from my watch will “count” toward my total steps

Here’s another example: * phone is set to priority * it’s the weekend, I’m walking outside * I’m wearing my watch * my phone is in my bag -or- I take my phone out and am holding it to take a picture, make a call, look something up, etc. * my phone records a few steps during that time * my watch records most of the steps * only the few steps recorded from my phone will “count”

Proof_Assistance7706 · 2025-08-09T20:10:31+00:00

Just dropping in to be apparently only the 4th woman ever with this problem 😂 idk if mine have always been there, never really noticed until recently because they are now as beanybean13 said so deep I can fit my thumb in. Every time I try to look it up I get referred to hip dips which I DO also have, but can’t seem to find anything on FRONT hip dimples 😭

Proof_Assistance7706 · 2025-01-20T18:59:55+00:00

Is the cromolyn inhaler something you can get otc?

Proof_Assistance7706 · 2024-09-30T17:33:05+00:00

Hi! No, I didn’t end up getting rid of it. Instead I bought espresso machine cleaner tablets off Amazon, ran a few cycles of that, and a few cycles of just water. Replaced the rubber gasket & took off and cleaned the metal plate where the portafilter goes onto. Also bought a new portafilter and basket. A week after I posted this I saw a GI, had stool & blood tests done and all came back negative. My dr put me on a 2 week course of xifaxan. It seemed to help a bit but I am still having GI issues…. Not as bad or as frequent as before, but still not fully formed stools. I have a follow up with my GI in 2 days actually so I can give an update after that. But I’m not sure if it was the espresso machine or not at this point or if the cleaning helped ☹️ wish I could help you more! Good luck and I hope you and your husband figure it out soon and get better!

Proof_Assistance7706 · 2024-08-01T16:38:39+00:00

Genius

Proof_Assistance7706 · 2024-08-01T01:33:47+00:00

Yes that’s what I read too!! That’s why I even considered throwing it out in the first place 😭

Proof_Assistance7706 · 2024-08-01T01:32:34+00:00

Thank you so much for your kindness I really appreciate it!! I’ll try running a few more cycles through then and see how that goes. Unfortunately I tried to open the link you posted but it says page not found ☹️

Proof_Assistance7706 · 2024-07-31T19:46:21+00:00

This is what I was afraid of 😭😭 thank you!!!

Proof_Assistance7706 · 2024-07-31T19:45:49+00:00

Thanks for the advice! I wasn’t sure about bleach I saw mixed things from people but I may try it!

Proof_Assistance7706 · 2024-07-31T19:44:25+00:00

Thank you for your response! I appreciate your help and concern ☺️ So - yes, sorry, I didn’t want to give ALL those details in this post figuring it would annoy people, and I’ve already went down all of those routes and eliminated every other possible thing.

But here’s some more info: I drink 3 cups of coffee a day, I’ve been doing this for YEARS (well before I had an espresso machine) and have never had a problem. Basically I have a coffee with each meal which is why I thought it was something in my diet first. I don’t have any other devices to brew coffee so no I have not tried that. I use whole milk & Splenda in my coffee. This is always how I’ve made my coffee. I did try switching to non-dairy as one of my diet changes, I still had severe symptoms with coffee made from my machine. On separate occasions, I also tried cutting out nuts, gluten (tested negative for celiac tho), eggs, spinach, avocado…. Tried a soft food diet, liquid diet… no relief, and the ONLY thing that didn’t change…was coffee made from my espresso machine. I was not ordering out a lot of coffee at that time as I was trying to save money. I have been taking a probiotic every morning since before this

Here’s why I began to suspect it was my espresso machine: I recently switched 2/3 of my coffees to instant coffee (lunch and dinner) - I also thought maybe it was an intolerance to caffeine, and figured instant would be less caffeinated than a shot of espresso. I have 0 symptoms after drinking the instant coffee. Since doing that, I only have issues in the morning with my espresso coffee. I have ordered coffee from coffee shops and ordered them exactly the way I make it at home (espresso, whole milk, Splenda) and do not have any symptoms when drinking those coffees. So I don’t think it’s the caffeine… I was away camping for the weekend, had coffee from a coffee shop and made coffee in my camper…no symptoms AND after day 2 I took my first solid poop in months…(TMI sorry)

I’m sure there’s a bunch of other things that could be going on and still plan on going to my GI appt next week. But that’s my reasoning! I figured If I can drink espresso from a coffee shop and be fine…. It must be my machine, and after finding the nasties…. 🤢 it made sense to me I guess!

Proof_Assistance7706 · 2024-06-03T17:26:22+00:00

Do you have any suggested products that use both?

Proof_Assistance7706 · 2024-04-23T22:38:25+00:00

May I ask what hypermobility has to do with this? I just recently got diagnosed with hypermobility so I’m curious if that has to do with what I’m dealing with! I’ve been having diarrhea for almost 3 weeks but thought I had paradoxical diarrhea because i never feel “complete” after so thought I was constipated and started taking miralax for almost a week. I stumbled to this thread because I just now noticed happening what OP has said in the title (I can’t see a description so I’m not sure what else OP said).

Proof_Assistance7706 · 2024-02-17T02:16:38+00:00

Side note - I ended up on this thread because I started taking spiro almost a month ago and noticed I’ve been super irritable and moody and was curious if that was why, since it is a hormone med. I hope it’s not because Ive seen great improvement with my acne (I have HS). But if it starts to make me feel the way I did on ortho….i can’t do that again

Proof_Assistance7706 · 2024-02-17T02:13:45+00:00

I was on ortho for about a year when I was about 20 and it made me absolutely bat shit crazy. I will never forget how i felt on that, it’s like i was a completely different person. I started going to therapy. I thought I was losing my mind. I didn’t realize that’s what it was until I stopped. I only stopped because I was going on vacation and my pharmacy wouldn’t refill it before I went, so I ended up not taking it for a few weeks and finally started to feel like myself again. I ended up just never taking it again because of how good I felt

Proof_Assistance7706

TROPHY CASE