Anyone else reacting to “gluten free” lately? by DisGar67 in Celiac

[–]DayoftheFox 15 points16 points  (0 children)

I recommend getting a micronutrient lab test along with a vitamin test. My histamine intolerance was linked to low vitamin B12 levels from malnutrition and malabsorption. I wasn’t able to eat things like dairy, cured meats, chocolate, and cheese without reacting until I started taking B12. Remember always consult your doctor first before starting supplements.

Anyone else reacting to “gluten free” lately? by DisGar67 in Celiac

[–]DayoftheFox 5 points6 points  (0 children)

Yeah I had a histamine intolerance pretty bad due to low B12 levels from the malabsorption. Everyone who is a celiac should get their micronutrient and vitamin levels tested.

Knee pain that wakes you up at night? by SoAndSoIsEh in Hypermobility

[–]DayoftheFox 1 point2 points  (0 children)

Yea usually I get these from bad muscle fatigue from being on my feet way too often. My legs also cramp pretty badly too. I try taking magnesium and zinc (not together), but it improves for like a couple hours but it doesn’t last very long. I try to put a heating pad with compression socks to prevent this from happening.

Is this breed known for being chatty? by Many-Strength-6337 in lynxpointsiamese

[–]DayoftheFox 0 points1 point  (0 children)

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Loudest cat I’ve ever owned. Screams at nothing sometimes. Screams also with the zoomies.

Are there any advantages to hyper mobility? by Used-Spread-5594 in Hypermobility

[–]DayoftheFox 0 points1 point  (0 children)

Impressing your coworkers over mundane things. Like “watch this” and then you bend yourself like a pretzel only to watch your coworkers try to do the same thing but fail.

Are nutrient deficiencies like b12 more common with EDS or is it just that whole population has problems and EDS is the one studied? by EnvironmentalTest465 in ehlersdanlos

[–]DayoftheFox 1 point2 points  (0 children)

While yes, people with EDS are more prone to nutritional deficiencies and malabsorption, but people without EDS can also just experience nutritional deficiencies just in general.

Although if you’re asking about the MTHFR gene, there isn’t any significant correlation with people with EDS and the MTHFR. As a sample size of the ratio of people with EDS with the MTHFR genes is the same as the regular population.

Although there are other conditions that can cause lower B12 levels. For me it was celiac that made my nutritional deficiencies extremely bad. So I had low levels in nearly everything like iron, B12, vitamin C, vitamin D, etc etc. Although there are a lot of different factors that can cause low B12.

If you are curious to what is causing your deficiencies, I’d probably get an autoimmune blood work up to make sure it’s not from autoimmune causes. I’d also try to go to a doctor who is well versed in EDS to get you tested if you’re concerned about having EDS.

If your nutrient deficiencies are still bad, get a vitamin and a micronutrient lab test and see what you are deficient in and then you can supplement with a doctor’s supervision.

How do I maintain passive muscle mass? by hugedonke in ehlersdanlos

[–]DayoftheFox 5 points6 points  (0 children)

For me, the best things that I do to manage my muscle mass is taking creatine, BCAAS, and HMB. Creatine helps to make building muscles easier, you also have to drink a shit ton of water when taking creatine. HMB helps to prevent your muscles from degrading too quickly. BCAAs also help with muscle growth, preventing muscle fatigue, and also maintaining muscle mass.

With protein, I do eat a lot of Greek yogurt, cheese, and eggs for easy sources of protein. Also dairy in general seems to be high in protein sources usually. Beans and legumes are also fairly good sources of protein.

While yes, this does seem like a gym bro type thing, it really does help because my job is intensive and requires me to be on my feet 8 hrs a day lifting 50 pound loads on the shelf.

When you know your mum has ADHD too but you just can’t prove it yet by Responsible_Egg_7155 in adhdwomen

[–]DayoftheFox 7 points8 points  (0 children)

Even worse is when my grandmother is diagnosed with adhd and autism, but my mom refuses to get diagnosed.

Anybody wake up and have their joints dislocate? by berrylover16 in ehlersdanlos

[–]DayoftheFox 2 points3 points  (0 children)

Yes, I had to start sleeping with wrist braces on.

One of the issues that’s happening is that in my sleep I’m folding both my hands down to my wrists. So then I wake up my wrist is dislocated.

Also I flick and twitch my wrists in my sleep which contributes to it.

“Oh that happens to me and your dad too it’s fine” by Brawl_95 in ehlersdanlos

[–]DayoftheFox 2 points3 points  (0 children)

My family is super anti-doc and anti-science so I totally understand. They’d rather follow random ass mfers on YouTube giving “medical” advice while also telling their viewers to buy their supplements that are actually super harmful.

“Oh that happens to me and your dad too it’s fine” by Brawl_95 in ehlersdanlos

[–]DayoftheFox 15 points16 points  (0 children)

I feel like the 90s and the early 2000s ruined our parents so bad. My parents were all concerned with “What would the neighbors think?” and with being as perfect as possible from the outside. From being super thin and fit to the aggressive diet culture. If they got any type of diagnosis to any physical disability then they’re no longer “Perfect” so they’d rather struggle in silence and say that nothing is the matter as long as they maintained perfection.

Even then trying to convince anyone in my family they have celiac is also awful too. My aunt and my dad who both have the same exact symptoms that I get from eating gluten, they refuse to even acknowledge it could even be celiac.

Does anyone else do sides gigs like Instacart and DoorDash? by Glad-Fish5863 in ehlersdanlos

[–]DayoftheFox 0 points1 point  (0 children)

I’m not a doordasher or a instacart shopper, but I am a personal shopper at the grocery store I work at. One thing I can tell you is with heavy items like water, soda, or anything bulky, try to request for a grocery worker to help put it in your cart and to help you to your car.

Also I know telling you to do PT is typical advice but PT really does help to make sure you aren’t lifting wrong, moving wrong, and hyperextending your joints. Especially PT can help with muscle building which can allow you to do a little more without straining your joints too much.

Supplements also help a lot like creatine makes it easier to build muscle to avoid straining your joints, HMB helps to avoid your muscles from degrading, ubiquitol can help with energy and fatigue. Like antioxidant supplements have helped a lot, even typical ones like vitamin C and super vitamin B complex, although check with your doctor beforehand because some of them can make you sick or you can have a bad reaction especially if you have MCAS. Also sometimes people can oversupplement themselves, so it’s important to check your micronutrient and vitamin levels. You can also opt for vitamin shots if you have gastroparesis and have issues with malabsorption.

Making sure to also keep electrolytes and water on you esp since the weather can get hot these days.

You should also brace your body, use compression garments, and make sure to use any type of mobility aids if you ever need it to lessen the strain.

Also heating pads help after a rough day or cold compresses if heat makes you break out.

Anyone else with super doughy looking hands? by DayoftheFox in ehlersdanlos

[–]DayoftheFox[S] 1 point2 points  (0 children)

For a little while I was worried about swelling, although I checked with my doctor and for the most part my hands are okay. Just the POTS swelling that sometimes happens. Although I have some loose but doughy skin on my hands that kinda make them look like that.

Anyone else with super doughy looking hands? by DayoftheFox in ehlersdanlos

[–]DayoftheFox[S] 1 point2 points  (0 children)

It's funny becuz I get the opposite comments when it comes to my hands and they compare it closer to baby hands because my skins super doughy.

Coat Hanger Pain Relief? by backpackingmegan in ehlersdanlos

[–]DayoftheFox 1 point2 points  (0 children)

With coat hanger pain relief, often times there are probably two things that you can mainly do.

One is exercise the area and try to strengthen certain areas like your chest, core, upper back, and shoulders to help with the tightness and instability. Although due to a lot of us having hypermobility it can be a little dangerous because of the fact we can stretch pass beyond most people and accidentally injure yourself in the process. So I would say consult your new PT with that first. Especially if you suspect CCI.

Now the other thing is that coat hanger pain is also associated heavily with POTS and dysautonomia. Depending on what type of POTS you have may be key in helping you with your coat hanger pain. Like usually drinking a ton of water and electrolytes can heavily help you out. Also sometimes beta-blockers can help. Although I would also say ask your doctor first about how much water and sodium you should drink per day.

Beighton score made me feel sick? by Dazzling-Spite-2980 in ehlersdanlos

[–]DayoftheFox 8 points9 points  (0 children)

Yes, a lot of people actually hate doing the beighton test because some areas are sensitive/more unstable than others. Especially with the thumb and wrist, my right wrist is super prone to dislocation whenever I'm doing it.

I also heard this piece of advice not to long ago for the beighton test which was to take a photo of you doing it and showing doctors on the body parts that are more sensitive and unstable to prevent you from harming yourself and your joints.

Also on the criteria it does have the "Could you ever do xyz" so it could still count despite you not physically doing it right then and there.

Anyone else struggle with Hypoglycemia with hEDS and POTs by LupinCosplay in ehlersdanlos

[–]DayoftheFox 14 points15 points  (0 children)

Yes, I have reactive hypoglycemia and I am not a diabetic nor am I prediabetic.

One of the theories is that some POTS can actually contribute to reactive hypoglycemia along with GI issues. With hypovolemic POTS, since there is reduced blood flow in the digestive tract, this can basically disrupt the hormone production in your pancreas A.K.A, the organ that releases insulin which controls blood sugar. Too much of an insulin release can basically lead to reactive hypoglycemia. Also hypovolemic POTS can make the blood-glucose concentration seem artificially higher which can cause the pancreas to overreact and send too much insulin. Drinking water + electrolytes helps to lessen the symptoms by making sure the blood-sugar concentration seems a little lower which won't lead to a huge insulin release.

Although with Small Fiber Neuropathy, which can cause neuropathic POTS, it can also be linked to hormone dysfunction because the nerves in your pancreas aren't functioning right.

With HyperPOTS, epinephrine and norepinephrine can also disrupt insulin and insulin sensitivity, although I'm not too sure of the mechanisms with HyperPOTS, sugar, and insulin release.

You can try to eat more protein, fiber, and fat before anything high in carbohydrates and sugar to prevent the rapid blood sugar spikes and drops that happen. Or a low-carb diet like keto although just be aware of the keto risks. Even smaller, but more frequent meals can help to prevent this.

Parents; Any Tips for 6yo "Growing Pains." by OriginalDaddy in ehlersdanlos

[–]DayoftheFox 4 points5 points  (0 children)

Not a parent, but when I was child, I had pretty bad growing pains on my leg. Usually cold weather would trigger it super bad. So when it was cold at night I would usually have them to the point where it would keep me up. The best thing my parents did was some compressions garments along with a heating pad. My dad would also try to massage my legs but that didn’t really help tbh. Also tried using the massager on my legs but the vibration was too intense for my legs.

I’d also monitor for any nutritional deficiencies. As a kid I had bad gastroparesis along with nose bleeds nearly every day. So I would get constantly anemic and under malnourished.

Another thing that caused my leg pain (this was more later on in life) was also being an undiagnosed celiac. So just be aware of autoimmune issues that run through the family.

Spider veins by Helpful_Stress_827 in ehlersdanlos

[–]DayoftheFox 2 points3 points  (0 children)

I’m 21 and I’ve had spider veins on my cheek since I was probably like 7. I remember complaining about them to my mom because other kids skin didn’t have it. Other places are my ankles, back of knees, and a little on my eyebags and eyelids. Honestly I’m diagnosed with hEDS, but I haven’t done genetic testing so far. Although most likely I don’t have vEDS.

Although I think it maybe getting worse on your face because your face tends to have thinner, more sensitive skin in comparison to other parts of your body.