if long covid causes specific symptoms, wouldn’t it make sense that long swine flu might also do that? i ask because my ME/CFS started after i got H1N1 as a teenager. anyone else also have this experience?
understandably, a lot of the posts on this subreddit are about people who had to care for their younger siblings as kids. i was an only child and i feel like i was heavily parentified in different ways. when i was younger i was responsible for so many aspects of my own care that i ended up developing serious hypervigilance (always worrying something would be overlooked and come back to bite me). meanwhile, my dad was so mentally ill (unmedicated bipolar) that when i (very occasionally) stayed with him i was basically caring for myself and him, rather than being cared for. and as i got older and gained an income my mom became less and less responsible/stable and tried to rely on me for money and emotional support (thankfully i've set serious boundaries and gone low contact, which has helped). there's lots more, of course, but that's a quick summary. just curious if anyone else on here has had experiences more along those lines.
i was diagnosed with lipo-lymphedema this week. i’m curious about dry brushing and how it could help with my symptoms more than what i’m already doing (MLD, vibration plate, etc.). thanks in advance!
the work of daniel pinkwater introduced me to absurdist humor, counterculture, dada, 1950s chicago, making fun of beatniks, old movies, the chicken man, fat positivity, and a lot of other things that were highly formative. as a kid i found his number in the white pages and used to call him a few times a year and he would always humor me and my friends with a conversation.
i’m curious if any other office hours fans grew up on daniel pinkwater! i was so excited when he got a shoutout on the latest episode… was hoping matt would talk more about the snarkout boys!
just curious to confirm that people can have this body shape without having the diseased fat state. i know lipedema is extremely underdiagnosed so i’m more looking for anecdotal examples out of curiosity—people who have a similar body shape as those of us with lipedema, but without the pain or limited function.
especially curious about those with prostaglandin-dominant, hormone-sensitive MCAS and maybe comorbidities like PMDD, PCOS, ME/CFS, and lipedema who might have tried this drug! thanks in advance!
i definitely have lipedema along with lymphedema and venous insufficiency, but my concerns about the severe pain and limitations it causes me have been dismissed by doctors for so many years that i’m irrationally worried i still won’t get diagnosed and be able to access treatments.
i have a lower extremity vein reflux evaluation tomorrow as well as an appointment with a specialist tomorrow afternoon. can anyone share their experience or any reassurance that my lipedema is unlikely to be overlooked? i just want to be able to treat it to stop it from getting worse :’(
i was diagnosed with PMOS while only meeting one of the criteria (irregular periods, which began when i was malnourished as a teenager). despite having no signs (clinical or on testing) of hyperandrogenism, i was told to take spearmint supplements as an anti-androgen (because i couldn't tolerate the diuretic effect of spironolactone), which did absolutely nothing for me but drove my estrogen levels too high, causing a severe MCAS flare. i ended up just giving up on my reproductive endocrinologist appointments because they were such a blatant waste of my time.
i feel like i have a genuinely complex hormonal situation (including some documented genetic differences in the enzymes that break down estrogen) and this umbrella diagnosis does nothing whatsoever to help me address that or get to the bottom of it. it's supposed to be a diagnosis of exclusion, but it's ended up just allowing incurious doctors who suck at their jobs to do the bare minimum.
i feel like my case is so weird. i know that in PMDD the root issue isn’t a hormonal imbalance, but i don’t have normal hormone levels (PMOS), so i have an irregular cycle along with irregular but pretty obvious PMDD.
i have generally elevated estrogen levels and respond very well to progesterone (mentally and physically), i’m just more sensitive to progesterone (allopregnanolone?) withdrawal. i also have hormone-sensitive MCAS that’s very noticeably triggered by rises in estrogen and a genetic difference in one of the liver enzymes that breaks down estrogen (CYP1A2).
i’ve pretty much figured this all out on my own because no gynecologist or even reproductive endocrinologist ever understands my situation. luckily my immunologist is happy to prescribe progesterone because it treats MCAS. i’m just looking for other people in similar situations because so much of the usual advice doesn’t seem to apply?
i’m currently at 3/4 ampoule a day (split into 4 doses) and seeing noticeable improvements, but every time i raise my dose (weekly, by a 1/4 ampoule each time), my symptoms do flare up a bit for a few days. curious if it makes sense to increase faster to get the benefits of a full dose or continue to go this slowly to avoid titration side effects? if anyone has any experience/insights!
anyone else with mcas get this? curious if it’s maybe a prostaglandin-dominant thing bc it seems to come with bone pain and body aches a lot. the skin in these spots isn’t visibly irritated but even regular touch and especially cold hurt for a few days. often on my abdomen but today on my elbow.
I get an IV medication delivered every two weeks, administer it at home without any help from a nurse, and have done so for several years. I have always had $0 copay on this medication.
Out of the blue, for two two-week spans of the medication, I was charged copays of $700 and then $593. For all following weeks (about 10 weeks' worth of medication, or five deliveries), I was charged the usual amount of $0.
I've been calling MassGeneral Brigham insurance for over two months trying to get this resolved and while every customer service rep I speak to acknowledges that the discrepancy between copays obviously makes no sense, it never gets resolved, and when someone else calls me back with a "resolution" they always end up saying it's correct and "the copay is $50 per day" even though it doesn't explain why that's the case only for a few times I've gotten the medication.
I'm tired of going in circles with my insurance company and I have no idea how to resolve this problem. Can anyone help me figure this situation out? Is there a procedure I can follow to get this straightened out when every single actual human I speak to at my insurance company says the copays make no sense?
I have a chronic condition and stress really exacerbates my symptoms, so this especially sucks. I've dealt with a lot of medical bureaucracy and red tape before and I've still been in tears for hours because this situation feels so uniquely stressful and hopeless. Being sick is really hard and expensive already and I can't imagine how I'll pay an unexpected $1,300 bill. Thank you in advance for any help or commiseration you can offer!
Here are the two EOBs for the incorrect bills:
Claim Detail - 26072E28180
Plan: [Redacted]
Claim #: [Redacted]
Status: PAID
Service type: Medical
Service date(s): 02/27/2026 - 03/12/2026
Servicing provider: [Redacted]
Paid to: [Redacted]
Total provider charges: $11,065.18
Paid date: 04/15/2026
Paid by Mass General Brigham Health Plan: $2,565.24
Your share: $700.00
Claim line: 1
Service code: J1335
Description: [MEDICATION NAME]
Provider charges: $7,565.18
Mass General Brigham Health Plan Share
Allowed amount: $1,837.24
Paid by Mass General Brigham Health Plan: $1,137.24
Your share
Your deductible: $0.00
Your coinsurance: $0.00
Your copay: $700.00
Other patient responsibility: $0.00
Claim line: 2
Service code: S9500
Description: [MEDICATION INFO]
Provider charges: $3,500.00
Mass General Brigham Health Plan Share
Allowed amount: $1,428.00
Paid by Mass General Brigham Health Plan: $1,428.00
Your share
Your deductible: $0.00
Your coinsurance: $0.00
Your copay: $0.00
Other patient responsibility: $0.00
Plan: [Redacted]
Claim #: [Redacted]
Status: PAID
Service type: Medical
Service date(s): 03/13/2026 - 03/26/2026
Servicing provider: [Redacted]
Paid to: [Redacted]
Total provider charges: $11,065.18
Paid date: 05/06/2026
Paid by Mass General Brigham Health Plan: $2,672.24
Your share: $593.00
Claim line: 1
Service code: J1335
Description: [Medication name]
Provider charges: $7,565.18
Mass General Brigham Health Plan Share
Allowed amount: $1,837.24
Paid by Mass General Brigham Health Plan: $1,244.24
Your share
Your deductible: $0.00
Your coinsurance: $0.00
Your copay: $593.00
Other patient responsibility: $0.00
Claim line: 2
Service code: S9500
Description: [Redacted]; Q24 HRS
Provider charges: $3,500.00
Mass General Brigham Health Plan Share
Allowed amount: $1,428.00
Paid by Mass General Brigham Health Plan: $1,428.00
Your share
Your deductible: $0.00
Your coinsurance: $0.00
Your copay: $0.00
Other patient responsibility: $0.00
-----
And here is an example of one of the many EOBs where I was charged $0:
Plan: MM COMPLETE HMO CONNECTORCARE 0/22
Claim #: 26141E20955
Status: PAID
Service type: Medical
Service date(s): 05/13/2026 - 05/21/2026
Servicing provider: [Redacted]
Paid to: [Redacted]
Total provider charges: $7,113.33
Paid date: 07/01/2026
Paid by Mass General Brigham Health Plan: $2,099.08
Your share: $0.00
Claim line: 1
Service code: J1335
Description: [Medication name]
Provider charges: $4,863.33
Mass General Brigham Health Plan Share
Allowed amount: $1,181.08
Paid by Mass General Brigham Health Plan: $1,181.08
Your share
Your deductible: $0.00
Your coinsurance: $0.00
Your copay: $0.00
Other patient responsibility: $0.00
Claim line: 2
Service code: S9500
Description: [Redacted]; Q24 HRS
Provider charges: $2,250.00
Mass General Brigham Health Plan Share
Allowed amount: $918.00
Paid by Mass General Brigham Health Plan: $918.00
Your share
Your deductible: $0.00
Your coinsurance: $0.00
Your copay: $0.00
Other patient responsibility: $0.00
in addition to my PMDD, which is specifically triggered by progesterone and allopregnanolone withdrawal, rising/high estrogen levels are such significant MCAS triggers for me that i i basically have 0 symptoms when my estrogen is lower relative to progesterone. on the flip side, i flare horribly and have bad mental and physical symptoms sometimes for weeks around ovulation, so i’m trying to stop my cycle with continuous birth control. i’m not sure exactly how much of this is PMDD vs. MCAS, but it’s definitely both.
i’ve tried drospirenone (somewhat helpful but didn’t stop my cycle) and norethindrone (helped immensely—stopped ovulation, mood issues and MCAS symptoms immediately—but tanked my estrogen too low, causing urinary issues).
next i’m trying nextstellis (drospirenone + estetrol) because combined pills are more effective for cycle suppression and i do need some estrogen in my system, so hopefully this will stop the hormonal fluctuations that trigger MCAS.
why estetrol: it’s supposed to be less risky than ethinyl estradiol (the commonly used form of estrogen in BC pills) for cancer and side effects, as well as maybe for MCAS? it’s not processed through the same liver enzymes i have genetic issues with.
anyone have any experience with nextstellis?
rising + high estrogen are such significant MCAS triggers for me that i i basically have 0 MCAS symptoms when my estrogen is lower relative to progesterone. so i’m trying to stop my period/ovulation with continuous birth control and progestin-only pills haven’t worked so far.
i’ve tried drospirenone (ok but didn’t stop my cycle) and norethindrone (helped immensely—stopped ovulation and MCAS symptoms immediately—but tanked my estrogen too low, causing other issues).
next i’m trying nextstellis (drospirenone + estetrol) because combined pills are more effective for cycle suppression and i do need some estrogen in my system, so hopefully this will stop the hormonal fluctuations that trigger MCAS.
why estetrol: it’s supposed to be less risky than ethinyl estradiol (the commonly used form of estrogen in BC pills) for cancer and side effects, as well as maybe for MCAS? it’s not processed through the same liver enzymes i have genetic issues with.
anyone have any experience with this?
i have estrogen-sensitive MCAS that has been really improved by norethindrone but the medication is also causing symptoms of low estrogen (bladder, mostly).
has anyone been able to stop their cycle—not just periods but ovulation—without feeling like they’re in early menopause? like with a combined E+P birth control pill? (i’m specifically sensitive to rises in estrogen so assume the same dose every day wouldn’t be as bad)
if you’ve been successful at this please let me know how! thank you in advance!
i actually don’t think i have endometriosis—i hope it’s OK to post here—but i have MCAS triggered primarily by estrogen and large functional ovarian cysts. i just started 5mg norethindrone to try to suppress ovulation (slynd didn’t work for this) and subsequent MCAS flares and have been on 100–200mg prometrium nightly to minimize mast cell reactions (it’s pretty effective) for several months. my gynecologist seems hesitant about keeping me on this combo because she’s never done prometrium + progestin before, so i guess i’m looking for anecdotal cases where people might have used both? thank you in advance!
i have MCAS triggered by high estrogen as well as stage 2 lipedema, and i’m taking a progestin birth control pill and prometrium (bioidentical progesterone) continuously in an effort to suppress my period and calm my mast cells. it’s helped a lot but now i’m switching to norethindrone to fully suppress my cycle, fluctuations in which are still contributing to (thankfully less severe) MCAS flares. since estrogen contributes to lipedema, is anyone taking prometrium or progestins to improve lipedema? thanks in advance!
has anyone taken this for MCAS? mine is horribly sensitive to estrogen so i’m taking it to suppress my cycle. it’s usually used for endometriosis. thanks in advance!
partially hydrolyzed guar gum—i have mild ME/CFS as well as MCAS and it gave me a big burst of energy when i started taking it! plus helping my GI system feel a lot more resilient. i believe it selectively feeds beneficial bacteria, including those that produce butyrate. highly recommend!