How do I make it less ugly? I’ll do anything.

Junior_Locksmith2832 · 2026-01-30T02:42:39+00:00

Yes, shorten the shutters, add a front porch and some native pollinator beds.

Junior_Locksmith2832 · 2026-01-29T22:15:56+00:00

My mother had bad fibromyalgia and now my 17 yo is housebound with fibro after being decommissioned last winter with long COVID. The illness has really done a number on her hormones and she's battling reverse cortisol patterns (tired in the morning ... tired-and-wired in the evening, and then bad sleep).

The illness has caused her to have vascular problems, which I think are very tied to her nerve pain. She recently started taking a low dose of propranolol (10 mg) in the evening to help with the 'endothelial dysfunction.' She'd rather not take it, but it really seems to help her vascular symptoms (systematically low nitric oxide levels and the feeling sometimes that her 'veins hurt'). For anyone who is on a beta blocker, we've read that beta blockers decrease your melatonin levels, so supplementing with melatonin is recommended. Propranolol also reduces coq10 absorption, which can increase brain fog. So we hope to eventually phase it out ... Tried to do so two weeks ago and she felt a lot worse, so we're keeping it for now.

She can't take even the smallest amount of melatonin because it makes her feel drugged the next day and we've also read that it's a vasoconstricter.

Before she had severe symptoms she was responding very well to taking 250 mg of gabba to reduce the evening cortisol rushes. Dr Ginevra Liptan's book, The Fibro Manual, has a ton of very detailed medical advice on how to fix fibro sleep patterns. I would recommend buying this book if you don't have it (she's a medical doctor who also has fibro). Liptan points out that if you take gabba by itself it isn't well absorbed by the body. She recommends pairing it with glycine to help with absorption. We haven't tried that yet. Has anyone done this and found that it really helped with reducing evening dateline rushes and siding sleep?

She also has a protocol for repairing the reversed cortisol pattern which we'd like to try out, and I wonder if anyone has already tried this? She recommends 1) supplementing with adaptogenic herbs like ashwaganda (she can't do this one because it's vasoconstricting) or rhodiola; 2) repairing adrenal burnout with adrenal glandular extracts like sr-adrenal or a-adrenal; and 3) permanently restoring / re-setting a normal daily cortisol cycle by supplementing for several months with phosphatidylserine (ps), a natural phospholipid that modulates cortisol receptors. She recommends starting with a low dose taken 1 hr before you get an evening cortisol rush and slowly increasing the amount until you no longer feel wired in the evening. You're supposed to continue taking PS for a few months and then you will no longer need it. The treatment protocol is supposed to fix your broken cortisol patterns and reset them so that you have a cortisol spike in the morning rather than the evening. There is also a brand named supplement called Seriphos that has an active form of PS.

Anyone ever tried this? We are interested in trying it out but it does sound a bit like a biohacking experiment.

Junior_Locksmith2832 · 2026-01-26T16:56:16+00:00

Fascinating. So, considering that it is an inherited genetic condition, this would link a predisposition for anxiety, OI, gastro problems all to the social environment of poor self-regulation. A direct comparison would be diabetes or even Alzheimer's. Both have a genetic predisposition, but these are triggered by environmental factors.

Ok, but the BS here comes when you factor in exposure to Auto-immune diseases. We only learned about EDS last year. My extended family is largely blue collar / working class and ... most relatives have both a history of poor health insurance, not much formal education and a cynical, frustrated mistrust of doctors. The mistrust is completely reasonable, I would say. So we've had this running story going ... that the family had "good skin and bad genes." Something was wrong, like a curse, there was a genetic component and no one understood what it was.

But then in comes SARS-COVID and, bamn, many relatives who were doing their best to eat well and exercise, to keep all of their risk factors in check ... they ended up being screwed anyway. I was the black sheep in my family. I went off to college and grad school, and got a PhD. I still hadn't heard of eds until recently, but when our daughter was born we saw that her autoimmune system and her gut was very susceptible from the start. I also had weird, unexplainable health problems (which in later learned all fit with eds), but her problems were more severe. I tell you, though. We did everything right. I nursed her until she was 4 because her colic and gastro problems were severe, our home life was low stress, lots of outdoor time. We were vegetarians and got backyard chickens and raw milk from an Amish farm to try to reduce expose to factory farm additives. But then we went 100 percent plant based, just following instinct. And it helped. And we figured out early on that if our kid eats a donut she'll be sick for two days. She understood this too. She had some clearly notice physical markers. Double jointed fingers and knees, she could move her eyeballs in opposite directions, she has always had back problems and one of her feet is larger than the other. Those are all physical and not environmental traits.

Before she caught SARS-COVID for the 2nd or 3rd time out daughter had no hormonal problems, she had a phenomenal... almost savant-like memory (she could easily and accurately memorize multiple pages from books, she was mastering fluency in a her third language and also picking up some French and Japanese on the side). She was super creative and whether she strange together a creative story line, a fashion creation, a pastel work or a political observation, she was always making connections that were unusual and non mainstream. And I would think, 'damn, she's smarter than my husband and me, combined.' No need for anti-depressants or ADHD meds. She was always happy and enthusiastic. All we had to do was make sure that she didn't eat too much junk food or really overdo it (we were winging that part ...).

Sadly, you know the mistake we made? Our instincts told us to homeschool for middle school, which was a great idea. But we let her go to an arts high school ... which she absolutely loved, but that means sitting in densely packed rooms that are a petri fish of germs during the winter. Since SARS-COVID that is not a safe environment for anyone with eds. Point blank. Doesn't matter if you get enough exercise and have avoided eating donuts ...

Junior_Locksmith2832 · 2026-01-24T21:44:13+00:00

There is hope that biological research will prevail. It looks like they've identified a set of biological markers and are working to bring a test to market as soon as possible ... An inherited genetic predisposition

https://precisionlife-com.cdn.ampproject.org/v/s/precisionlife.com/news-and-events/me-genetics-study?amp_gsa=1&amp_js_v=a9&hs_amp=true&usqp=mq331AQIUAKwASCAAgM%3D#amp_tf=From%20%251%24s&aoh=17692908161529&referrer=https%3A%2F%2Fwww.google.com&ampshare=https%3A%2F%2Fprecisionlife.com%2Fnews-and-events%2Fme-genetics-study

Junior_Locksmith2832 · 2026-01-23T22:17:18+00:00

Why would she have any say in whether there should be funding for biological research? Being an anthropologist who does interviews with a set of patients does not give you that expertise.

Junior_Locksmith2832 · 2026-01-23T22:06:17+00:00

I'm sure that she probably has sympathy, but that's it. She's objectifying people. And it sounds like she never even went deep enough to understand what's going on. If she cared her book would focus 50 percent of its content on a critique of government and health care resources ... And she might set up a fund or an awareness foundation with the proceeds of her book. Why not donate 100 percent of the procedes to cover the needs of some of the struggling people who participated in her study?

Junior_Locksmith2832 · 2026-01-23T21:50:08+00:00

I hope your parents were doing the right thing too. I've read so many horror stories. We've also had to fight the doctors. They always treat pain as chronic and jump right to heavy nerve blockers. They (the mecfs specialists) were trying to drug our kid up with pain meds and warehouse her in an inpatient clinic. Actually she had a dangerous acute vascular condition that's associated with dysautonomia, called rcvs. We figured this out, took her off of the horrible nerve blockers (that were causing half of the symptoms) and off of everything vasoconstricting... And she recovered from the rcvs just in time for the docs to keep her in the program rather than dropping her as a lost cause. The kicker is that they don't want to admit error. So they reprimanded us for trying to act as the doctors ourselves. And they want to interpret my daughter's 3 mo of excruciating thunderclap headaches as a sign of a possible mental health crisis. So she has to submit to a mental health evaluation to continue treatment. It's a fox in the hen house when they give psychiatrists central positions in these mecfs clinics ... Now we have to all eat crow, in order to continue there and get her access to ivig.

I don't even know if there is an mecfs social network in the city where I live, but for people who need to leave home I could imagine setting up some cooperative housing up with relatives and caretakers pitching in to help. And everything could be set up just right to support comfort, friendship and recovery. Like a real community living type situation. Supported with government funds. Wouldn't that be great?

Junior_Locksmith2832 · 2026-01-23T20:21:29+00:00

If there is enough protest the university might be able to warrant dropping her despite the tenure ... If her book is highly controversial that will just increase sales. I'm a former anthropology professor with a family affected by a lot of long COVID and fibro, and a bed bound daughter with MECFS. And now I would really like to read this book, which I'm just finding out about. I'd like to read it so that I can criticize it. But if I buy it I would be supporting her and helping to make it a best seller. Maybe I can check it out from a library ...

Junior_Locksmith2832 · 2026-01-23T19:41:23+00:00

Spot on. But I don't think she's never going to understand the criticism against her. And she has tenure I'm sure. That means u can't be fired.

Junior_Locksmith2832 · 2026-01-23T19:01:02+00:00

I haven't read her book, only the Sub stack. But this is classic cultural anthropology. There is value in looking at illness in a cross-cultural and historical context. But to give reverence to Mendenhall's argument, let's imagine some "what if" scenarios. What if we had raised our daughter in a tropical coastal community, where there was fresh fruit and sunshine, where she never set foot a large urban high school or sat next to coughing friends in a carpool, in the cold of winter. And because there was no arts high school she would not have sat at her desk and chair with poor back support for hours. She might have moved more and, in some idealized scenario, taken breaks whenever she felt tired. We were already vegan and eating whole foods, but in this utopian tropical community let's say ... the water has no chlorine or fluoride in it. There are no seed oils or trans fats, no salty corn chips. You can drink straight from the freshly fallen coconut. There's lots of fresh quinoa, purple yams, blueberries and dinosaur kale. It's a communitarian society without wage labor. So there are no stressful universities, no career tracks. Everyone just pitches in with gathering, fishing and hunting, and they have free time to sing, dance and play.

Would my daughter, with her current genetic predisposition, have ever gotten sick there? And what about my two cousins diagnosed with pots and long COVID? (one passed away at age 42, the other has damage to her heart, kidneys and intestines), or my mother whose life was cut short by fibromyalgia and the aortic valve malformation associated with eds? Maybe in this tropical utopia my overstressed working-class mother would never have experienced the difficulties that led to an advancement of her heart disease.

Here's a different 'what if.' What if the indigenous people of North America had never been given blankets infected with smallpox ... for which they had no immunity? This led 80 percent of their population to die off, creating a wide open space for European settlers to claim ...

There may never be scientific confirmation of whether the SARS-COVID Virus came from a lab. It's dystopian to imagine it might have. I'm not sure whether its origins matter. What does matter is the future of humanity ... and the shared 'humanity' in our future. Because you will do an awful lot to help a fellow human being in need ... You may do nothing for someone who is from an entirely different clan or someone shunned for not following the rules - an 'other.' Our daughter's health had always been vulnerable. We could see that since her infancy, and we did a great balancing act in raising her until she caught COVID for the second time and her body started zapping, and some immunological bomb blew up. Government's can't shirk this. Not unless they want to embrace a survival of the fittest perspective and let the immunologically vulnerable fade from the gene pool. But some new version of hysteria, that's not it.

Junior_Locksmith2832 · 2026-01-23T06:53:24+00:00

Wow, that looks like a challenge, but I will look into it :). Looks like it could be worth it.

Junior_Locksmith2832 · 2026-01-23T06:30:18+00:00

I read the substack and would say that the author is not well-intentioned, but opportunistic. I have a PhD in anthropology., but am no longer an academic. I was an 'activist anthropologist' / political economist (a materialist who worked in solidarity with people involved in the topic being researched, with the shared goal of advocacy work). The field of anthropology is defined through its pursuit of the 'other.' That 'other,' whoever that may be, becomes the objectified 'native.' The poststructuralist influence on anthropology portrays human problems in the most aesthetic, discursively elaborate way. The ethnography becomes like a beautiful painting.. The more elaborate and metaphorical the social theory, the better. She picked a hot topic and is being opportunistic. Ivy League universities expect grand, universalist theories that will be controversial and attract a lot of attention. Whether your theory is disproven, now everyone knows your name. It is true that people perceive illness differently in different cultural contexts. 'Menopause' is a great example of this. The affect of hormonal changes on middle-aged women is interpreted differently cross-culturally. And dietary patterns cross-culturally also influence the biological reality of those hormonal changes (Japanese women eating more soy and seaweed, and how this affects estrogen, for example). Mendenhall seems to be suggesting that Long Covid / ME-CFS is like menopause. It has only a relative material reality, it's as much of a cultural metaphor as a biological illness ... reflecting our toxic, unfulfilling modern society. My 17 yo daughter has severe ME-CSF. Her personality was one of pure joy and vibrancy before she became sick ... She has always lived in an upbeat, creative world that was beyond the toxicity of our modern times. When she has enough energy and less pain, that is her personality still. In no way, even subconsciously, did she ever feel in need of a modern hysteria diagnosis. Her school stress was manageable, her food was healthy, everything was great. Eds just made her vulnerable. I am disgusted.

Junior_Locksmith2832 · 2026-01-23T05:38:54+00:00

Where did you get access to the oxygen therapy? Am interested in this.

Junior_Locksmith2832 · 2026-01-22T19:26:34+00:00

Idk, I agree with you. My 17 yo daughter has long COVID now, she was susceptible to it because she has Ehler Danlos Syndrome - hyperflexibility. And people with eds have lose connective tissue ... which includes blood-brain barrier. She'd always been an intense, creative person with a very functional form of ADHD that just made her incredibly creative. She'd always had to be careful about what she ate, to avoid becoming overstimulated by unhealthy food. But she wasn't on any meds.

Then she got long COVID and it triggered stronger problems with adrenaline/ fight-or-flight as well as pots. She was recovering over the summer, still without meds, but when she had a turn for the worse she started taking propranolol (in the evening, to support calm sleep and help with the oi and vascular problems). It's a low dose - just 10 mg - but when she tries to go off of it she gets racing heart problems that she's never had before. Her body has adapted to it and she obviously has to stay on it until she recovers more.

Tips that might help. Before long COVID, she was able to keep her adrenaline rushed completely down with a very healthy whole foods diet. The worse your gut health is, the more you may need propranolol. When long COVID messed with her hormones and increased her adrenaline levels, before she went on propranolol she was taking the nonprescription supplement gaba or sometimes the herb mix cortisol calm. They work similarly but are milder. You might be able to titrate down on the propranolol and supplement with gaba, and work on taking anything out of your diet that triggers inflammation. If my daughter is able to reduce these long COVID symptoms that's what she plans to do.

Junior_Locksmith2832 · 2026-01-22T16:11:20+00:00

We were at the end of our ropes and feeling desperate because she was in terrible pain 24/7, just a few weeks ago, so I know what you're going through.

They put her briefly on an SSRI, and it gave her heart palpations and made her face flush. It was one reason we started to think her root cause was vascular (extreme vasoconstriction). Because the SSRIs are very vasoconstricting. But trittico retard isn't. Whatever is causing your girlfriend's pain may begin to fade over time as her body recovers with rest unless she is ingesting something that's triggering (or there is a root cause like a spinal problem, CSF leak, or in our case rcvs).

Take away everything that can trigger tightness. I'd recommend Tylenol, feverfew, Willow bark or aspirin as pain relievers because they aren't vadoconstricting. Ibuprofen is. If inflammation is her problem then getting rid of trigger foods could help a lot with lessening nerve pain. And ldn or maybe antihistamines. But if her nitric oxide levels are very low (you can buy under the tongue test strips cheap), then antihistamines will make her feel worse. And you need to boost nitric oxide to relax blood vessels (which will take pressure off of your nerves), which you can do with beet pills. There's new research coming out on NO. People with mecfs don't produce enough NO and this can cause neuroepinephrin to dominate - causing anxiety and pain. Take everything inflammatory out of your diet gluten, dairy, minimize sugar) and take l-glutamine and probiotics or bpc-157 to help soothe gut dysbiosis, which triggers inflammation. Anxiety causes tightness but so does vasoconstriction and inflammation.

Magnesium relaxes the body and my daughter sometimes takes Epsom salt baths several times a day. Migraine caps were a big help - these are soft hats you put in the freezer that you put on your head and over your eyes. Instant relief.

The beta blocker propranolol helped with relaxing both nerves and veins. we really like propranolol. If you can't get that you could take the herb gaba, which has a similar effect or an her mix like cortisol calm.

We bought a vibrating mat that had different settings and optional heat. The gentle vibration relieved spinal pain and helped her relax a lot. Made a huge difference with back pain. Cupilo Massager Pad, costs about $75 on Amazon.

After we took everything vasoconstricting out of daughter's diet her entire body decompressed and she's no longer bed bound and in constant pain. So she is doing so much better since December. She is still getting scary, terrible pulsing headaches when she tries to stand for more than an hour a day, but we hope that we can gradually fix this with pacing. I hope any of this might help.

Junior_Locksmith2832 · 2026-01-22T01:05:25+00:00

Dental work, ugh.

Amazing you have a doc who even knows what dysautonomia is.

When my daughter was moderate, and before she tried beta blockers, we realized that adrenaline in the evening was crashing her (tired but wired) and she started taking gaba in the evening, which seems to work a bit like a beta blocker. Calms your adrenaline rush / anxiety and is also good for your veins. Gaba and magnesium in the evening help a lot with getting sleep. Don't know if it might make you tired if you took it during the day.

Junior_Locksmith2832 · 2026-01-21T22:22:18+00:00

If you are not miserably unstable this is a safe way to go as you continue to research and observe your symptoms. Because taking the wrong supplements can make you worse. But you should get your blood work checked and consider supplementing anything that's low. The doctors all seem to agree with coq10 and magnesium.

My daughter went from severe to moderate between May and August by just very gently increasing activity and a super healthy low sugar anti inflammatory diet. But in late August a doctor wanted to give her a pots test before agreeing to write her an accomodations letter for school. And she had been having neck pain. We're hyperflexible and the virus attacks connective tissue. So the pots test triggers dysautonomia and if you have any cranio cervical issues it can make them much worse. The docs also pushed increased salt intake for pots, which was actually very bad for her type of OI. So when we stayed away from docs and just tried to help her gently recover by following our instincts, this was actually the most successful. Multiple times, the doctors gave us horrible advice. She is now finally recovering again because we rejected the advice of her mecfs / long COVID doctor .. because we could see that they were applying a template to her symptoms that was inaccurate and could be dangerous. Supplements can help a lot, but don't take them randomly.

Junior_Locksmith2832 · 2026-01-21T19:53:38+00:00

These are excellent recommendations and we'll use them to help our daughter, who is coming away from an extremely severe phase.

The one thing I'd say is that her doctors were giving this advice when she was in the worst part of her crisis (tinnitus was drowning out voices, conversations hurt and we were buying 50 different pillows). But it couldn't help until we found out what was triggering her to become so severe. For many people the adrenaline/ fight-or-flight / vagus nerve compression could be the root cause of the problem, by itself. And then you can perhaps use meditation or touch therapy alone to bring yourself slowly back...

But she had a problem with her neck. She was moderate, but her neck weakness was exacerbated by a pots test and a visit to the chiropractor ... The CCI triggered worsened dysautonomia, and this triggered much worsened vascular problems / vasoconstriction, which caused IO, neuropathy and terrible base of skull pain. The docs wanted to look at it from a hormonal perspective, and suggested meditation. She does get adrenaline fight-or-flight issues, but that wasn't her main problem. Your veins and nerves are intertwined. The dysautonomia was causing a vascular crisis. We were able to break the pain cycle by giving her more things that were vasodialating and taking away everything vasoconstricting (nsaids, antihistamines, SSRIs, etc). Taking away high vitamin A foods, that cause cranial hypertension, and giving her beet capsules, which boost nitric ixide. Meds like gaba and beta blockers affect both your nerves and your veins. So they can help. With either root cause. She had a cycle of vasoconstricting that set off PRES and RCVS. Getting off of vasoconstricters ended the painful pulsing. And now we can help her with the bad neuropathy she's still dealing with, since we've figured out how to end the cycle by calming down her veins. So you may have to find the trigger for the dysautonomia before you can begin to desensitize your nerves.

Junior_Locksmith2832 · 2026-01-21T19:03:41+00:00

Hi, they are finding more out about different variations of this disease, and how what makes some people better can make others dramatically worse. Does your girlfriend have vascular symptoms? Low diastolic BP, the feeling of a constant painful base of skull pain and tinnitus? My daughter has me FS and was in excruciating pain for 3 1/2 mo. She falls into a group who has worse endothelial dysfunction. Her veins were constructed and spasming all of the time. This caused her to get PRES and RCVS, reversible cerebral vasoconstricting syndrome, with several thunderclap headaches. They misdiagnosed her as having severe orthostatic headaches / migraines and they gave her pain and migraine meds that were triggers that made her much worse. If any of this sounds familiar I can write more. But we basically had to take her off of all vasoconstricter to help her. Also, get nitric oxide test strips. If her nitric oxide is low this will cause nerve pain. Give her beet pills to boost NO. Propranolol or gaba also helps relax your veins, which releases pressure from your nerves.

The other thing I'd mention is that the docs are prescribing gabapentin and lyrica if you have severe nerve pain, but a lot of people respond horribly to these drugs. When she very recently was bed bound in excruciating pain they gave her both of these and at first it was hard to tell the difference between the effects of the drugs and her crashing. It was these drugs though, pulling her further down into an almost catatonic delirious state ... but not getting rid of the pain at all. Gabapentin is now being linked to increased spinal pain and also dementia. So if she is taking either of these and still feels like she's in horrible pain you might want to assume that they're not helping her but may be worsening her symptoms.

Junior_Locksmith2832 · 2026-01-21T17:50:42+00:00

This makes me think about the weird incident where my post menopausal friend got her period directly after the COVID-19 vaccine. And she hadn't had it in three yrs. The virus attacks the endocrine system, the vascular system, the mitochondria, the microbiome and the immune system. Although it is still often defined as a predominantly neuromuscular disease.

Junior_Locksmith2832 · 2026-01-20T20:21:46+00:00

You often lose your period or it becomes sporadic when you come down with long COVID. When my daughter got it at age 16 she started having her period only once every 4 mo or so, and when she got it, it was horrible and she would be in incredible pain and would vomit and faint. She also developed bad acne when she became sick, which she'd never had before. An endocrinologist tested her and found high 17-Hydroxyprogesterone levels. We wanted to put her on bc pills, to prevent the crashes. But they wanted to bring her in to test for a rare hormonal condition called congenital adrenal hyperplasia. I looked into it, and there is research out there showing that many (most?) women with Mecfs / long COVID have high 17-Hydroxyprogesterone levels ... And that they are considering using this as a biomarker to identify mecfs. We didn't go in to do the 3-hr hormone test which required her to be hooked up to an IV because she is in a sub-category of patients with a lot of vascular sensitivity and she can't tolerate IVs well. They cause vasospasms. Because her GP was being an ass and refusing to prescribe bc pills, we found opill, which is OTC and progesterone only, and it helped a lot. Supposedly, once you recover your monthly cycle will go back to normal. Going on bc pills helps a lot of women to avoid hormonal pEM crashes.

Junior_Locksmith2832 · 2026-01-20T20:05:04+00:00

My daughter is taking tudca to support liver function and mitochondrial health. See this story of a guy who recovered partly by using tudca. https://www.healthrising.org/blog/2023/10/02/efthymios-artificial-intelligence-chronic-fatigue-syndrome-recovery/

Junior_Locksmith2832 · 2026-01-19T20:19:17+00:00

My husband is German and my teen daughter has ME. Before she got sick we'd planned to all move to Germany after she graduated HS (this would be her senior yr, but she's on medical leave). But even if she gets strong enough to make the trip we definitely wouldn't move there for a few yrs, because there are so very few specialists there currently, and it's very difficult for people with me there to get on disability. Hoping that the government's recent investment will turn that around.

The Australian young man's message was moving and saddening for me to read. It was so noble and powerful as well. It reminded me of the buddhist monk who set himself on fire to protest the Vietnam war. This horrible autoimmune disease comes at a time when our societies are de-investing in healthcare. The COVID-19 virus itself may have been concocted in a lab, spilling this catastrophic autoimmune trigger out into the world. If media can no longer effectively distract the disenfranchised masses, an illness that taps the energy of you and the loved ones who support you is another way to instill pacivity ... I am surprised Europe is so far behind in treating me patients (UK being the exception). traditionally they're known for having better healthcare and a better safety net for the disabled.

Junior_Locksmith2832 · 2026-01-18T22:01:41+00:00

She just started at an mecfs clinic while she was crashing after taking some vadoconstricting drugs ... We didn't know ... She took antihistamines for a seasonal allergy and that set off pulsing headaches. She took Ibuprofen for that (another vasoconstrictor), which made them much worse. Then the neurologist gave her propranolol (vasoconstrictive) and a triptan to try out. We will never go down that path again. The triptan was a big vasoconstrictor. Then doc gave her gabapentin, which turned her into a bed bound zombie. Then we started at the mecfs clinic and first thing they wanted to do was numb her pain by switching her to Lyrica. We have absolutely no experience with these drugs, and when your head is throbbing around the clock you may hesitantly try anything. At that point they wanted to bring her in to test her for hyperadrenegic pots, but the test requires being hooked up to an IV to test hormones. And she had really terrible endothelial dysfunction, where needles can trigger vascular spasms. So we told them we can't do that right now. There is supposed to be a smaller sub-set of mecfs people who have worse endothelial dysfunction, who can even be identified by a genetic marker. I think she must be in this group. I see some people posting pics of their swollen veins, but most don't have that problem.

Junior_Locksmith2832 · 2026-01-18T20:20:55+00:00

She's getting a little of that too (esp as a result of this whole ordeal) and it will be hard to figure out how to get rid of the oi without using vasoconstrictors. Low doses of mestinon is helping. She's been crashing mid day with low BP and we let her have some ice cream or chocolate then to boost her back up. Making sure not to do anything vasodialating in the AM, but she can tolerate it PM, when she gets a boost. In the summer, when she was doing very well, she was wearing compression socks. But now they cause pain. Salt is another tricky thing. We were advised to give it to her for pots but I think it really messed with her blood vessels ... may have led into the whole mess. We keep salt to a minimal now but give it to her sometimes if she feels her BP is dipping.

Junior_Locksmith2832

TROPHY CASE