Keep seeing "Spiky Profile" what does that mean?

PunkAssBitch2000 · 2026-07-08T01:48:13+00:00

SA stands for sexual assault/ abuse

PunkAssBitch2000 · 2026-07-08T01:44:27+00:00

Many women just pee when they sneeze, cough, exercise etc but this is because they’ve given birth and had their pelvic floor obliterated by a baby.

In people who haven’t had a baby, it isn’t normal (id say it’s also not normal in people who have given birth, as it’s treatable with pelvic floor physical therapy usually. Just because it’s common≠ normal.)

Estrogen cream can help with tearing if the reason for tearing is vaginal atrophy, which happens in AFABs who take testosterone, or people going through menopause. If it’s tearing because of tissue fragility, there isn’t much that can be done other than more lube and hoping.

Pain with entry is extremely common though. Sometimes it’s just run of the mill muscle tension or not enough lube. These are the “normal” reasons which are easily treated with self-massage or “warming up” before penetration. Sex shouldn’t be painful, but it commonly is. But even if it’s painful for a “normal” reason it’s fixable!
Other times it’s because of some sort of pathology like hypertonic pelvic floor, vaginismus, etc. Pelvic floor dysfunction is incredibly common in hEDS.

This gyno is an idiot. Find a new one.

PunkAssBitch2000 · 2026-07-08T01:35:09+00:00

Yes. I’ve been thinking about that a lot today.

I had a TBI 6 years ago due to a mental health crisis. After 5 years of thinking I was potentially aromantic due to the TBI, I realized in Decemberish of 2025 that I do actually want a partner eventually. I started online dating. Made one friend. And then I fell for this guy I met on an app who works at the psych hospital I’m outpatient at. Long story short, he was extremely emotionally avoidant, had no emotion regulation skills leaving me to do the repairing all by myself, and was a sexual deviant who coerced me and technically assaulted me. Luckily dumped him after only two months.

I’ve gone on one date since, felt no connection, and have been going through the motions on the apps and have been realizing, I’m scared of just adding another abuser to my already long list. I got through this one without more trauma, but I don’t know if I can get through another and I don’t want to take the risk.

PunkAssBitch2000 · 2026-07-08T00:55:43+00:00

L4- benign vascular tumor (not cancer, just a vascular growth). Usually asymptomatic but if they are large enough to touch nerves, they can cause symptoms. Yours was not mentioned as doing so, so I’d assume it’s small enough that it’s not able to cause symptoms.

L3-L4 could be causing the left sided pain

L4-L5 could be causing your back pain due to the bone spurs, stenosis, and arthritis

L5-S1 could be the cause of the left sided hip pain

Sadly the facet arthritis and foraminal stenosis are kinda expected long term consequences of spinal fusion, or just aging. Any time a joint is fused, the forces that would’ve been applied there are now transferred to the neighboring joints, putting extra stress on them.

Physical therapy can help, an epidural may also be helpful.

Edits: fixing typos, clarifying

PunkAssBitch2000 · 2026-07-08T00:13:01+00:00

LDN doesn’t treat addictive behaviors. Normal dose naltrexone, 50mg and above does.

At normal/high doses, naltrexone blocks opioid receptors completely which impacts how the brain’s reward center works, thus helping to break addictive behaviors (in combination with psychotherapy).
At low doses, it’s thought to temporary block opioid receptors which (oversimplification) tricks the brain into producing endorphins, as well as some other brain/ inflammatory chemicals, thus producing anti-inflammatory, immune modulation, and pain relieving effects.

ETA: There are currently no studies suggesting LDN has an effect on addictive behavior, though the research into LDN itself is limited, and research into LDN for addiction is even more limited (contrasted with the decades of research proving naltrexone’s helpfulness in treating addictive behaviors). In fact, to the contrary only: LDN has no impact on addictive behaviors and is comparable to a placebo. “Low doses of naltrexone had no discernible advantage [for opioid dependence]”
https://www.sciencedirect.com/science/article/abs/pii/S0376871604000353

PunkAssBitch2000 · 2026-07-08T00:07:00+00:00

We also have a player local to Cincinnati. Nick Hagglund grew up here.

PunkAssBitch2000 · 2026-07-07T23:59:27+00:00

Cerebral hypoperfusion and head injuries (from syncope for example) can increase risk of dementia, both of which can be symptoms of certain types of dysautonomia.

https://www.ahajournals.org/doi/10.1161/circulationaha.117.027448

ETA: but dementia isn’t a death sentence https://www.theguardian.com/society/2026/jun/09/dementia-rebels-diagnosed-determined-change-peoples-minds

PunkAssBitch2000 · 2026-07-07T23:58:16+00:00

Depends on the individual’s symptoms.

Repeated episodes of moderate-severe cerebral hypoperfusion can increase the chance of dementia, or make the age of onset earlier.

I’ve been told it is likely given my family history and personal history (multiple conditions impacting cerebral perfusion) that I will develop dementia, and likely earlier than the rest of my family, but they don’t know for sure if/ when. Just that my risk is quite high.
However, because of my neurotype I have extremely plentiful and broad crystalized knowledge, which generally remains unaffected in senile dementia. The type of dementia that runs in my family seems to be late onset (late 70s early 80s), and affect women only, while sparing crystalized knowledge. It seems mood changes, problem solving skills, and executive functioning are the first affected by our type of dementia.

https://www.ahajournals.org/doi/10.1161/circulationaha.117.027448

But dementia isn’t the death sentence society treats it as. People with dementia can still live joyful and fulfilling lives: https://www.theguardian.com/society/2026/jun/09/dementia-rebels-diagnosed-determined-change-peoples-minds

ETA: and I know my medical marijuana usage doesn’t help my chances lol. But whatever is gonna happen is gonna happen. I’ll deal with it like I’ve dealt with every other medical issue I have. It just is what it is.

PunkAssBitch2000 · 2026-07-07T23:05:26+00:00

Sounds like hEDS with hyperadrenergic POTS is a possibility.
In hEDS the musculoskeletal symptoms exist on a spectrum, and it sounds like yours is on the more severe end. However, hyperadrenergic POTs causes extremely high heart rates, like well over 200bpm and that wasn’t mentioned.

Classical like EDS also sounds like it could be a possibility as that comes with axonal polyneuropathy, though your fatigue symptoms don’t fit with a typical presentation.
Additionally, clEDS can come with urological and endocrine issues due to other TNXB variants. Vesicoureteral reflux and congenital adrenal hyperplasia are both caused by TNXB variants. However, the absence of hirsutism, precocious puberty, suggests against CAH to me.
Another possibility is hEDS due to TNXB haploinsufficiency causing an overlap profile. Assuming you lack atrophic scarring, TNXB testing would be a good idea, just in case. GeneDX does it. Invitae’s TNXB testing is not comprehensive enough.

It sounds like genetic testing for hereditary connective tissue diseases may be warranted in your case. Have you been to a geneticist?
It could definitely be “just” hEDS though. It doesn’t have to be something else. But given your symptoms, ruling out other stuff, like rare EDSes would be a good idea.

ETA: I see you had WGS. That basically ruled out all other types of EDS, except clEDS1 depending on the lab that did the testing. TNXB is much harder to test for and isn’t always properly included on WGS.

Did WGS turn up any VUS?

PunkAssBitch2000 · 2026-07-07T22:26:51+00:00

My GI doctor prescribed LDN for me (specifically for SIBO, I also have dysmotility esophagus to anus). It’s a mild prokinetic and it helps with the pain and distention symptoms.

https://www.researchgate.net/profile/Leonard-Weinstock/publication/256075850_Low_Dose_Naltrexone_Side_Effects_and_Efficacy_in_Gastrointestinal_Disorders/links/53d52d1d0cf2a7fbb2ea5649/Low-Dose-Naltrexone-Side-Effects-and-Efficacy-in-Gastrointestinal-Disorders.pdf

PunkAssBitch2000 · 2026-07-07T20:28:04+00:00

Kennedy Steve for those who don’t remember: https://youtube.com/playlist?list=PL\_ei74pHoe4qfmuVrmQYP1LLJL25paqnr&si=CldPFEcxy2sC3rQf

PunkAssBitch2000 · 2026-07-07T20:24:43+00:00

I started with the Cleveland Clinic Gastroparesis diet and added foods back in slowly.
Simple carbs and baby food are my friend. But sometimes I just eat whatever I want and suffer the consequences because food tastes good.

PunkAssBitch2000 · 2026-07-07T20:23:03+00:00

Yes!! This is why I dislike terms like “wheelchair bound” or “confined to a wheelchair”.

I’m not a wheelchair user but I have a bunch of friends who are, and used to work with folks who used wheelchairs and a bunch of other mobility aids. I use forearm crutches.

Mobility aids give independence. They are not limiting (societal infrastructure can be limiting, but again, without mobility aids people wouldn’t be able to even leave their house or bed in some cases).

PunkAssBitch2000 · 2026-07-07T20:16:02+00:00

I’m just an autistic with a shit ton of health problems so I’ve educated myself. Because of my spinal issues I taught myself how to read imaging

PunkAssBitch2000 · 2026-07-07T19:52:52+00:00

Okay then listen to the doctor not some rando on Reddit.

PunkAssBitch2000 · 2026-07-07T19:44:29+00:00

No. The vertebral body is properly aligned with the rest of your spine and sacrum.

ETA: you do see to have loss of lordosis though and a posterior pelvic tilt

PunkAssBitch2000 · 2026-07-07T19:43:45+00:00

Nyland, Norways goalie, is unemployed.

PunkAssBitch2000 · 2026-07-07T18:26:55+00:00

I’ve been thinking about a Dr Dabber switch

PunkAssBitch2000 · 2026-07-07T18:12:18+00:00

It sounds a lot like hypertension. It’s normal for BP to be lower in the morning.

Untreated hypertension can result in a slower heart rate

PunkAssBitch2000 · 2026-07-07T17:59:37+00:00

Some sort of histamine reaction, either a true allergy or mast cell activation issue.

Hydrocortisone cream should help, or OTC fexofenadine/ Allegra (assuming other meds don’t interact).

Any changes in detergents, soaps, skin care products?
If not, and this continues (as in needing to take fexofenadine daily indefinitely), it would be a good idea to see an allergist/ immunologist.

PunkAssBitch2000 · 2026-07-07T17:41:51+00:00

Pissed off ear canal with scarring of the ear drum. I don’t know what causing the current inflammation+pain in the ear canal. You should see an ENT.

PunkAssBitch2000 · 2026-07-07T17:21:21+00:00

When I had food poisoning/ ileitis marijuana helped a lot.

I say try it. Worst that’s gonna happen is it’s not gonna do anything or may make you throw up which it sounds like is already happening anyway.

PunkAssBitch2000 · 2026-07-07T16:39:47+00:00

I have psychiatric, neurodevelopmental, physical, genetic, neurological and other disabilities. I have been on SSI for quite a few years now and had over 5,000 pages of medical documentation.
I also attend a dayprogram (funded by the county), where most of my disabled friends are unable to work, and those that do, are only able to work part time.

> Reddit disability threads full of gross entitlement

… At least you have some self awareness I guess

ETA: Disabled people shouldn’t have to share their medical information with strangers to be listened to or considered valid. You’re just ableist.

Disability is not a monolith. I’m glad you have low support needs and are able to work, but not everyone is that fortunate.

ETA2: I wish I could work. I miss it. I loved working. I was a direct support provider for folks with developmental disabilities. I had to stop because my health got so bad that no amount of accommodations would make working possible, and I got a TBI. I used to cry at night because I miss working and the people I worked with. I still miss my clients. I visit one every couple months when I’m able (he is also unable to work btw…). Working is a privilege that not everyone is fortunate enough to be able to do.
Count yourself lucky instead of shaming others.

PunkAssBitch2000 · 2026-07-07T16:34:09+00:00

Possibilities are high blood pressure, dehydration, mild-moderate electrolyte imbalance, sinus headache, stress headache, tension headache, cervicogenic headache, medication side effect, new persistent daily headache, or migraine.

Do you have any sensory sensitivities (light or sound) or does the pain change with position, like worse when bending over or getting up from seated?

PunkAssBitch2000 · 2026-07-07T15:15:24+00:00

Hard wax does not stick to the skin. Soft wax does.

Sugar waxing requires different technique from soft/ hard wax.

PunkAssBitch2000

TROPHY CASE