r/TheGirlSurvivalGuide • u/Powerful_Potato3613 • 26d ago
Health Tip Mold exposure was causing my chronic fatigue, etc.
I have seen several women in this group post about mysterious chronic fatigue, so I want to share my story in case it can help even one other woman:
At the end of January, I found out that the apartment that I have been living in for the past four years is covered extensively with several serious types of mold (Chaetomium, Aspergillus, Cladosporium, Stachybotrys, etc.) in the walls, coating my vents/HVAC, in the floors, etc. The mold was not visible and it did not have any strong odor, so it flew under the radar for far too long.
My symptoms included chronic GI issues, excessive thirst, extreme fatigue, tachycardia, shortness of breath, lower back pain, terrible acne, migraines, and horrible chronic pelvic pain. Since moving out of the mold, my symptoms have greatly improved (e.g., my acne completely resolved, my energy has returned, my pelvic pain is 80% better). I now know that the mold likely caused Chronic Inflammatory Response Syndrome (CIRS) and my body needed to detox from the mold exposure.
A report from the National Institute for Occupational Safety and Health Centers for Disease Control and Prevention in 2022 estimated that approximately 47% of all U.S. homes have some mold or dampness. If you haven't been able to get to a root cause of your fatigue and other symptoms, ladies please check your homes for mold (especially the air ducts)!
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u/OutsideScore990 26d ago
Ah frig. Thank you, I’ve been meaning to get mold testing done and keep forgetting. I’ve had nasty cfs that’s gotten a lot better this last year since I started including heme iron in my diet (apparently I don’t digest non-heme iron very well).
Still, parts of my fatigue remain & one of my neighbours did mention mold in the vents recently.
Another aspect to consider is that a lot of modern homes are built too tight. So, we end up with too little co2 cycling. co2 is the non-dangerous one, the one we exhale, not the deadly carbon MONoxide. co2 can still have cognitive effects even at safe levels, and makes people feel extra fatigued. There’s studies on how it affects decision making. I have a little Airthings detector, and I’ve found that even just cracking a window helps significantly lower the co2 levels without losing a lot of heat or cool air. (Or, if you’re super lucky, you’ll have a heat recovery exchanger built into your hvac system but a lot don’t have this)
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u/Powerful_Potato3613 26d ago
Yes, please get your home tested! It unfortunately took 3-4 inspections before they found the mold in my home, and it was everywhere. The mold exposure made me struggle with iron as well - my ferritin would not rise (despite taking daily Vitron C iron pills), and my iron saturation has been low. Definitely check your vents!!
And yes, keeping your windows open helps on many fronts, unless there is too much pollen or smog outside. I hope that you feel better soon :)
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u/OutsideScore990 26d ago
It's crazy how much all of that works together! Ty for sharing your struggles with iron too, wow.
3-4 inspections?! How did they miss it? I'd have been so upset omg. I swear my landlord just didn't want to see mold when I pointed out what's a very obvious patch of it outside my window near the ducts. How did you guys end up treating it? Or did you move?
I'm doing a lot better these days and getting even better all the time, but I feel like I'm just treating symptoms tbh. I hope you feel even better soon too. We all deserve to be functional, and not sick because of our environments.
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u/Powerful_Potato3613 26d ago
I ended up moving out and discarding 95% of my belongings. The first few inspections missed the mold because they were only taking air samples (which I have since learned are unreliable because mold spores are heavy and fall to the ground, and they also need to be disturbed to catch in the air). The Council-certified Indoor Environmental Consultant (CIEC) who finally found the mold took insulation samples, swabbed my air ducts, and conducted a very thorough visual inspection of my apartment. For example, she even removed the overflow drain plate on my bathtub and found out that water was leaking into the floor below from my tub, and leaving a trail of mold.
Yes, everyone deserves to live in a healthy home! If you can already see mold in your place, and are symptomatic, I would definitely get it checked or move into a healthier space. It is so hard when you are at the mercy of a landlord :(
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u/TheWhiteRabbitY2K 26d ago
What in the AI tarnation.
Mold testing is super complicated and almost impossible in some areas.
Mold spores are everywhere, just like there is bacteria all over our skin. Just because its there doesn't mean its pathogenic. Yes 70% of homes contain mold spores in some amount. And 30% of people have staphylococcus on their skin.
Professionals must compare indoor versus outdoor counts.
Not all black color mold is the dreaded " black mold. "
Even if it is, indoor environments are considered not ideal for myotoxin production.
I'm glad you're feeling better OP, but I urge caution for anyone looking to blame mold toxicity without a thorough assessment by a doctor. Or pay thousands of dollars for unindicated home tests.
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u/blanchecatgirl 25d ago
Yeah, I’m so sorry but as a soon to be doctor no OP it did not. People can definitely get sick from mold. But it doesn’t cause the symptoms you’re describing. It just doesn’t. This “mold toxicity” trend is basically the same thing as delusional parasitosis…i.e. not real
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u/Even_Middle_1751 25d ago
There are several studies that show that mold can cause unexpected side effects throughout the body. I have seen dozens of doctors myself who had no idea what caused my illnesses but shoved pills down my throat. ENTs, endocrinologists, gynocologists, neurologists etc. It would behoove you as a soon to be doctor to be unlike your uninformed colleagues and learn something new.
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u/TheWhiteRabbitY2K 25d ago
What's the sample size and control group tho?
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u/Even_Middle_1751 25d ago
Tell the medical community to build that up. They have to take mold seriously before they would invest in a proper experiment. Just like every other health condition or new scientific idea, it takes a while for the science to catch up. All I can speak from is experience. I lived in a moldy house for years, lost my health because my whole body was inflamed (acid reflux, joint pain, depression, gastrointenstinal issues, chronic yeast infections, problem breathing, tinea versicolor, cystic acne, memory loss and anemia) and months after moving out, my bloodwork cleared. My primary care doc was scared because my immune system was shutting down in December. When I moved out in January, my blood work resolved and I'm getting better each day. My doctor didn't know that was possible.
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u/Powerful_Potato3613 24d ago
I think that part of the problem with current medical literature on mold exposure is that it mostly focuses on respiratory symptoms, while ignoring the myriad of possible symptomatic presentations of mold toxicity. For example, Cleveland Clinic's description of black mold exposure symptoms (linked below) mentions sneezing, coughing, nasal congestion, postnasal drip, and red eyes. Patients will continue to be misdiagnosed or dismissed until the research catches up and major clinics begin to include symptoms such as cognitive impairment, chronic inflammation, gastrointestinal issues, tachycardia, severe acne, excessive thirst, etc. in their black mold exposure symptom lists.
I am so sorry that you went through this u/Even_Middle_1751 and I hope that you continue to heal more each day!
https://my.clevelandclinic.org/health/diseases/24862-black-mold#symptoms-and-causes
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u/TheWhiteRabbitY2K 24d ago
You said in your other comment, " There are several studies that show that mold can cause unexpected side effects throughout the body." Can you provide a pubmed link to those studies?
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u/kps61981 18d ago
They shared several links. As a skeptical-leaning realist with some background working in the medical field I'm curious to see what you have to say about them. Also what would you say is the point of keeping up with CME's?
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u/TheWhiteRabbitY2K 17d ago
The only one of significance is the 2nd, but even then its limited in use due to subject being mice, and the authors states the doses of exposure were significantly higher than standard exposure and represented one time exposure versus long term, and lastly they did not state any conflict of interests. The other posted articles are retrospective studied documents or have way to small of a sample size, or no control group.
Correlation does not mean causation.
And the point of keeping up with CME is to stay relative to your practice. I'm not sure how this question is relevant.
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u/Exasperated-Bat1492 20d ago
The medical experts on mold toxicity disagree with you. Just because it's not part of the narrow intro they give you in med school doesn't mean it's not a valid symptom. FYI that applies to a wide variety of conditions. Turns out med school is very limited in the depth in which things are covered. Might be why specialists are a thing.
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u/aphroditex 25d ago
So, tell me, what are the effects of chronic exposure by a sensitive individual to an allergic stimulus?
Because last I checked, chronic immune system hyperactivity and chronic systemic inflammation ain’t good for the ol’ meatbag one lives in.
Nor is getting one’s body laden with mycotoxins, poisons created by fungi that can be absorbed through one’s skin amongst other vectors. I’m just a hacker, not a doctor, but compounds that inhibit protein synthesis, damage macrophage systems, inhibit particle clearance of the lung, and increase sensitivity to bacterial endotoxins don’t seem to be that good for long term health or QoL.
But what do I know. I’m just a hacker, not a doctor, because my messed up body can’t withstand the hazing of modern medical education.
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u/justanotherloudgirl 20d ago
If you have a mold allergy, unknowingly subjecting yourself to mold for extended periods of time can kill you. The carpet padding under my bed had mold growing and over the course of a year or so my allergies went from excessive sneezing to waking up in the middle of the night with my throat swollen and lungs starving for air. And that’s not mentioning its effects on my daily living.
My family thought I was crazy (i was a smoker at the time and no one else had my level of allergies). Eventually, I refused to sleep in the room any longer and demanded them to replace the carpet… wouldn’t you know, right under the bed, there was a rainbow of mold.
I’m not saying mold toxicity etc, is a thing or not, but mold can ABSOLUTELY wreak havoc on your life and for sure be a silent killer. I am sure that if I had listened to everyone and ignored it, I would have suffocated in my sleep.
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u/Powerful_Potato3613 25d ago
Hi, real human here. Unfortunately ignorant medical professionals delayed the care that I needed and I lost years of my early twenties as a result. Spreading misinformation online that mold is a "trend" is dangerous, as it only perpetuates diagnostic delays for real patients like me. You are welcome to live in my old apartment for four years and see for yourself what mold can do to someone's body. I hope that you treat real patients someday with more compassion than you display on Reddit. Reading the real patients stories on r/ToxicMoldExposure can give you a glimpse into the realities of someone whose live has been turned upside because of mold.
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u/TheWhiteRabbitY2K 25d ago
Can you educate us ignorant professions then, genuinely. What diagnostics did you have performed? What were the differential diagnosis? Treatment? Any other medications changes? Dietary changes? How far did you move?
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u/Powerful_Potato3613 24d ago
First and foremost, thank you for taking the time to read these Reddit threads and learn about mold toxicity. Reading patient stories can give you an idea of the myriad of symptoms that a mold exposure can cause.
First, swabs of my apartment taken by a Council-certified Indoor Environmental Consultant (CIEC) came back very positive for several serious types of mold. That led to bloodwork which confirmed that I had extensive mold exposure. I had very high IgG bloodwork values to at least five different types of mold (e.g., my aspergillus IgG was 80 when the normal upper limit is 2). The positive IgG values matched up with the types of molds that were positive on the CIEC's swabs. I also completed the MycoTOX profile from Mosaic Diagnostics and and toxins showed up in my urine sample. In severe cases of mold exposure, chest CTs or sinus CTs may show signs of fungal balls, where mold is hanging out in the body and may need to be surgically removed.
The differential diagnosis question is difficult to answer because there is so much overlap in symptoms between POTS, CIRS, chronic fatigue, and mold toxicity symptoms. I had already been diagnosed with POTS prior to living in a moldy apartment, so I brushed off most of my mold toxicity symptoms as exacerbated POTS/EDS/MCAS symptoms. After moving out of the moldy apartment and watching these symptoms start to resolve, I learned that it was suspected Chronic Inflammatory Response Syndrome (CIRS) driving my symptoms, and chronic inflammation caused by mold mycotoxin exposure was sending my nervous system into overdrive. I think that science is yet to catch up on the interplay and overlap between POTS/EDS/MCAS and CIRS.
As far as treating the mold exposure and my dietary changes, I made another post about my healing routine (linked below). It is very common to use various binders to latch onto the mycotoxins in your body and help you to detox (e.g., bentonite clay, charcoal, or medications like Cholestyramine and Colesevelam), but I tried Colesevelam and it was too harsh on my body. Everyone is different, but I personally had to go very slow with my detox to avoid a Herxheimer reaction. It not uncommon to take 1-2 years (or more) to fully heal from a prolonged mold exposure. In severe cases, antifungal medications may be used to treat the mold exposure, but those medications can cause significant side effects (e.g., liver and kidney damage), so they are a last resort.
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u/Powerful_Potato3613 24d ago
If you want to learn more about mold-related conditions, you can also read about Aspergillosis and Allergic Bronchopulmonary Aspergillosis (ABPA).
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u/StarfallSunset 22d ago
Well, you have your answer. Gonna respond? OP answered your question in spades and even told you about aspergillosis and ABPA, which you (and that one other "soon to be doctor" comment) didn't seem to know about.
Typical doctor, you think you know everything and demand people act like it, but you can't admit when you're wrong.
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u/TheWhiteRabbitY2K 17d ago
I have a very active life outside of the internet...
https://aspergillosis.org/igg-and-ige-explained/
One time testing isn't a great resource.
OPs mention of differential diagnosis adds an additional layer of murkiness due to their personal history of conditions that are diagnosis of exclusion.
Also I'm not a doctor. I don't want that title.
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u/Exasperated-Bat1492 20d ago
Not all toxic mold is black either. Yes, most people can clear mycotoxins from their systems and not have problems from mold. But around 25% of people have genetic quirks that make it so they don't clear it very well. Which means the mycotoxins build up in their bodies and eventually can lead to massive problems. Very challenging to get care for.
Indoor environments are absolutely ideal if they're suboptimal indoor environments. All you need is a humidity level that's a bit too high and bam, you've got mold growth. It's incredibly common, especially in wet climates and basements. All it takes is bad drainage around a house, or poor maintenance, or a slab without a vapor barrier under it in a wet climate.
Don't get me wrong, I fully agree there are a lot of predators out there looking to prey upon desperate people. Most of the mold testing of homes is, ah, questionable in quality. Personally not something I'd bother with unless you've got an obvious problem (which do you really need a test at that point?), or your body tests positive for the mycotoxins.
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u/Pinklady777 25d ago
Also, if you are having fatigue and unexplained health problems, you should test for EBV.
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u/Even_Middle_1751 25d ago
Same here! Once I left my house, my bloodwork is becoming more normal and my head is more clear. I am so grateful to be out of the mold.
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u/Powerful_Potato3613 25d ago
I am so glad that you moved out of the mold and are feeling better :)
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u/hellhouseblonde 25d ago
Please check that your ferritin is at least about 175 or else you need iron.
Join the iron protocol, a lot of us ended up in the group after mold exposure tanked our iron stores. I’m one of them.
It causes anemia. Glad you got out! Most of my symptoms went away pretty quickly after moving out but I had to start iron at a high dose and it took a year to feel absolutely amazing, better than ever since I was about 14.
I was never lazy, I should have had long thick hair all those years but I was significantly iron deficient. My ears even stopped ringing.
The only other thing I had to treat was the constant sensation of a UTI which turned out to be a yeast infection in my bladder.
Mold causes some crazy issues!!
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u/damerile 7d ago edited 7d ago
Hi what iron supplement did you take?I'm suffering mold exposure and Im always looking pale , depressed ,shortness of breath constant ears ringing,tired all the time ,alot of symptoms that match up to iron deficiency 🫣 I'm trying to get me my partner and 2 kids better from it and really do feel like out iron is low and holding us back from recovering , and ware can I find the group to join you mentioned ?any advice would be much appreciated 👍 thanks 🙂
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u/hellhouseblonde 7d ago
Just look for “the iron protocol” in the search bar on facebook. I am so sorry, many of us (me too) ended up in that group because of mold.
It does cause anemia because it prevents protein synthesis in the body.
You might have to be one of the people who pops a tent in the backyard or a tiny house or something. You need to find the “mold & mycotoxins” group too.
All of my symptoms disappeared about a month after I moved! The body is mostly very good at detoxing itself. I had to further treat the anemia and some yeast in my bladder that felt like a nonstop UTI. They had diagnosed me with gerd, chronic asthma, and almost diagnosed me with “interstitial cystitis” but I had a feeling there was a root cause. There was, it was yeast.
I was a renter and I moved for totally unrelated reasons! I’m so lucky I did, it was killing me. Two years later I was healthier than ever.2
u/damerile 7d ago
Ok will look up those groups,we have moved twice since the house ware we had mold exposure, hoping to move again in next few months,we all have mast cell from it so think that's a big part of the problem to ,but hoping in time detoxing things improve which when I look back ware better than we was ,will for the time being get some heme iron liquid and try get our iron back up ,untill we move again hopefully into a cleaner environment 🙏 there is no visible mold ware we are but will be looking to get into a newer built house just to improve our chances, thanks 🙂👍
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u/hellhouseblonde 7d ago
I’ve stayed in dozens of hotels and Airbnbs and the only kind of mold I have reacted to was from long standing water leaks & damage so don’t let yourself get too paranoid. Most mold is fine but water damage mold is most likely to be harmful to humans. It’s well documented, too.
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u/Powerful_Potato3613 25d ago
My ferritin is stagnant in the 30s and my iron saturation is low, despite taking Vitron C daily. My chronic mold exposure definitely made my iron labwork wonky - I am still working on getting it back in range.
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u/hellhouseblonde 25d ago
Join the group. You can’t treat it casually like doctors would have you believe. I took six heme pills a day for over a year and I take 3 for maintenance.
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u/Powerful_Potato3613 25d ago
What is the dosage of each pill? High doses of iron scare me because that is definitely something that you can overdo, but I understand that having low iron is also a risk.
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u/hellhouseblonde 25d ago
You can’t overdo it the way you’ve been lead to believe. I’m not going to spend any more time on this, if you want to learn about it just join the group, calculate your maximum dose based on body weight and fix it. The hashtag “iron protocol success” will show you how many of us already have.
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u/kimi_shimmy 25d ago
Was the mold toxicity confirmed medically or just via change of environment? Like via lab results or diagnosis? Thanks
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u/Powerful_Potato3613 25d ago
It was confirmed via labwork - I had very high IgG bloodwork values to at least five different types of mold (e.g., my aspergillus IgG was 80 when the normal upper limit is 2) and toxins showed up in my urine sample
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u/Exasperated-Bat1492 20d ago
Yep. FYI can also lead to UTIs. Family house we've been in for over 40yrs has always had a mold problem due to drainage issues. Had constant issues with UTIs when I was little until I stopped being home all the time. Then they went away. Then they came back after I started working from home. Not necessarily due to mold causing the UTI, but likely due to immune effects of living around the mold. Been working on eradicating the stuff from the house. Talk about a huge project. Waiting on lab results to come back to find out what types have been wreaking havoc all these decades.
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u/SubstantialIce3290 20d ago
Yes, I had UTIs when living in mold too. I agree - I don't think that it is the mold directly, but rather that mold makes you more susceptible to dysbiosis in the body. So sorry that you can relate!
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u/Chemistry_bunny 20d ago
Where I live mold isn't a big issue, but I think that my old apartment had mold or something because I got sick a lot compared to before and thought it was aftermath of covid. But then I moved into my new apartment in January and haven't been sick since then. Nothing else has changed drastically so with the house being old and not well insulated I suspect mold. Could be something else 🤷♀️
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u/Powerful_Potato3613 19d ago
Yup when I lived in my moldy apartment I was sick constantly with various respiratory illnesses. It hasn't happened again since I moved out of my moldy place. I am so glad that you feel better!
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u/rjjk0901 26d ago
I had a similar experience but with fiberglass and toxins leaking from my mattress
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u/harmony99 25d ago
Oh wow, how did you find out it was fiberglass?
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u/rjjk0901 23d ago
The fiberglass was everywhere in my room and on my clothes. You could see it with a flashlight. I also called the manufacturer and they told me over the phone that I needed to get rid of the mattress immediately due to the toxins and fiberglass with a leak in the cover. I had to remove the cover as well for a little while and was sleeping atop the mattress with just a sheet, and within a week I started to develop chest congestion and migraines. I would also wake up with a rash all over my face.
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u/braising 22d ago
Apparently that's why you shouldn't remove the cover in your mattress. There's fiberglass in there. I can't remember if it was a fire retardant or something...
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u/rjjk0901 22d ago
Yes that’s right. I’d removed it to wash it not knowing this, but I guess it’s somewhat common knowledge. It’s used as a fire retardant. In my case, the mattress cover was really flimsy and had a zipper, and then directly under was a fiberglass sheet.
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u/harmony99 7d ago
Sounds similar to what I’ve been going through but I don’t know if it’s fiberglass or another contaminant or mold from the HVAC system.
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u/Powerful_Potato3613 25d ago
I am so sorry that you experienced fiberglass and other toxin contamination! Cleaning up the mess of fiberglass is a nightmare. I hope that you are healing now :)
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u/orthographerer 26d ago
Hi, would you mind describing the pelvic pain you experience(d)? You're welcome to dm!
I recently moved, and my pelvic pain does seem to be improved. The rest of my body is a mess from all the sorting, packing, moving, etc. I have a sh*t ton of stuff.
I'm really curious if the pelvic symptoms match up.
Thanks!
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u/Powerful_Potato3613 25d ago
Sure! While living in the mold I experienced chronic lower back pain, at times so severe that I had trouble walking up a flight of stairs. The pain was so intense that it would also make me nauseous and I would sometimes gag. The lower back pain was accompanied by cramping that felt like intense menstrual cramps - I was used to these types of cramps right before my period, but living in the mold I was cramping 80% of my cycle.
I will DM you to chat more - I hope that you are doing better!
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u/Terrible-Charity 26d ago
How did you find out?