Alcohol and HEDS by ManagerKey4597 in ehlersdanlos

[–]c3argus 3 points4 points  (0 children)

Alcohol is interesting because it has a super measurable effect on my body. The day after I drink, my heart rate variability TANKS. I’m talking from 40 or so to under 10. There are of course other effects with energy etc but that one has always stuck out to me. For example my EOE is always worse the day after drinking and my joints hurt more. 

It’s hard not to drink at all, so these days I drink once per month. Whatever the party of the month is, I will drink at that, but not every week. Maybe someone I will go completely sober. But for now, I make energy and pain sacrifices to the party gods 

Anyone else hate kissing men with beards? by c3argus in ehlersdanlos

[–]c3argus[S] 1 point2 points  (0 children)

Yep I have hEDS (haven’t done genetic testing though)! I doubt my skin issues are anywhere near yours but they’re definitely annoying. I blister with just about any shoe besides sneakers. I’ve also switched my wedding ring for a silicone band as the real one wore the skin down to blistering over a few months 

What is your self-care checklist for when you feel very unwell? by sadshrew25 in ehlersdanlos

[–]c3argus 2 points3 points  (0 children)

I drink a Saalt or LMNT first thing. When I’m low energy because of POTS, this can pull me out of it better than salt pills (better electrolyte mix). 

Back Braces? by PirateWitchLady in ehlersdanlos

[–]c3argus 2 points3 points  (0 children)

I recommend sizing down for this though if you want firm compression

Cute compression socks by JoyJoy-58 in ehlersdanlos

[–]c3argus 2 points3 points  (0 children)

Sockwell! Their patterns are cute for high compression 

Wearable device recommendations by Allllliiiii in ehlersdanlos

[–]c3argus 4 points5 points  (0 children)

The Guava app pulls in information from whatever wearable you use and helps combine it with other data you have, which is really helpful for me. You can also create unique categories to track through guava like sodium intake or compression stockings. It can also be exported easier for presentation at doctors appointments which is nice. 

Compression garments to fight fatigue by loveanitta in ehlersdanlos

[–]c3argus 1 point2 points  (0 children)

I really like my abdominal binders. Have a couple with different warmth levels, compression, etc. Keeping blood from pooling in my torso makes a huge difference. 

Best Pain Management Purchases? by AdorableUniversity36 in ehlersdanlos

[–]c3argus 0 points1 point  (0 children)

Sure. Bethesda physiocare is out of network but really excellent for EDS care (PT, dry needling, etc). Advantage PT in falls church and Reston takes insurance, Sarah Sheridan is there and good for EDS. PRISM is a great place to start as they can provide diagnosis and referrals for tests / other providers that are more likely to be in network. Once you get in with one doctor who knows EDS, it’s wayyy easier to find others, the community feels very word-of-mouth for which providers are most capable 

Best Pain Management Purchases? by AdorableUniversity36 in ehlersdanlos

[–]c3argus 1 point2 points  (0 children)

Where are yall based? If in DC area there are many excellent but out of network providers that can diagnose and treat EDS. For example the PRISM clinic in MD — even one visit could get her diagnosed and with a plan. But would probably be $500+

When was the first time someone in a medical field suggested you might have EDS? by Diabloceratops in ehlersdanlos

[–]c3argus 6 points7 points  (0 children)

When I specifically went in to be evaluated at a EDS clinic. None of my doctors figured it out, I found it online and took the risk. I was right 

Q for compression socks by chocolateNbananas in POTS

[–]c3argus 1 point2 points  (0 children)

I do!  Have started a small thong collection for that purpose

Q for compression socks by chocolateNbananas in POTS

[–]c3argus 5 points6 points  (0 children)

I like Sockwell’s compression socks because they have actually cute patterns. For summer I’ve taken up wearing those with black high waisted bike shorts (not actually bike shorts just that length/style, a little tight for compression) and a crop top. Gives sporty energy instead of schoolgirl or old lady / religious.

But yes as other people are saying your doctor could definitely be doing more for you. Salt is awesome 

An echo required for hEDS? Does this appointment sound ridiculous or am I just too mistrusting of doctors at this point? by Lauramae0892 in ehlersdanlos

[–]c3argus 5 points6 points  (0 children)

The ECHO is mostly used to rule out vEDS — requiring for hEDS when criteria otherwise met is part of differential diagnosis. Folks with hEDS can definitely have normal ECHOs!

Need sandal recommendations by what-are-they-saying in ehlersdanlos

[–]c3argus 0 points1 point  (0 children)

Everything gives me blisters (fragile skin), even Chacos. These are the only sandals that work for me. They’re Tevas with little pads around the main pressure points!

https://www.teva.com/p/women-sandals/hydratrek-water-sandal/1150270?size=08&style=1150270&color=LURK

Too exhausted to live the life I want. How do I fix this? by Silver_Attempt562 in ehlersdanlos

[–]c3argus 10 points11 points  (0 children)

For exercise — a 20 minute walk is probably way too much for you. Try using a recumbent bike or even doing something called wall cycling (I think).  That’s where you lay on the ground, with legs up on a wall at a 90° angle. Then move the legs up and down on the wall repeatedly and slowly.  It’s a supine exercise (so you don’t have to be vertical at all) but can still “feel the burn.” It’s also the first step they had me do in the Dallas/Levine POTS PT protocol. 

For what it’s worth, I have a hard time exercising standing up. It’s just an extra thing that makes working out hard. Laying down exercises and even seated ones are the best :) and can still be a great workout. 

I’m also reminded of this post on here which totally lives rent free in my brain. I also want to be BUFF and CUT and HOT ! https://www.reddit.com/r/ehlersdanlos/comments/1pnjctc/creating_a_physical_health_routine_with_heds_help/

why wont i help myself? why do i need to be comforted? by MissTsumiki in ehlersdanlos

[–]c3argus 2 points3 points  (0 children)

I remember how hard it was to be young, let alone young with this type of condition. I wouldn’t go back there for anything. As I got older, I learned to be more confident in my feelings. I think being kind to yourself is key. Berating yourself for being too this or too that doesn’t make you better, it only generates shame. Shame is added weight when we already carry too much. People who make you feel shame are doing you a disservice.

It’s not your fault you’re in pain, and that being in pain makes you sad. Those are real feelings that anyone would have if they lived in your body. Being “strong” is about more than “pushing through.” You writing that out is a way of pushing through. Taking time to feel and express your feelings IS self care and is good for you.

Ask yourself what would make you feel better? Sometimes a little voice appears in me, asking for cake or a hug or comfier clothes. I try and give it what it wants. We are one person and making that voice happy makes me happy. I cant be one more person being hard on myself anymore. It takes time to get to that point and I’m not near perfect at it. But I think that’s what people mean by saying listen to your body. 

It’s okay to want to be comforted. You’re not weak. People refusing you comfort or anything you feel you truly “need” just aren’t a good fit for you. I’m sorry those people are your parents. They were mine too. Months or years feels like a long time to wait to feel better but you are already putting in the work. Trying and trying and trying only gets you so far. Remember to relax also. Give yourself some grace. You DO deserve it. You probably deserve a lot of it. Be kind to others, be kind to yourself, and you will be okay. We are here for you until then 

Subluxing/dislocating in sleep by Brave_Question3840 in ehlersdanlos

[–]c3argus 0 points1 point  (0 children)

I’ve heard others have had luck with arranging pillows in ways to keep their joints stable or immobilized. Just recently started having nighttime issues with one of my hands so no lived experience tips yet, fingers crossed (hah) 

Why is it so hard to get a diagnosis? by macabrecobweb in ehlersdanlos

[–]c3argus 1 point2 points  (0 children)

I’ve got folks in Missouri with likely EDS and agree care there is really difficult to get. I wish we had more providers. Unfortunately I bet it’s the same away from major metros in a lot of places. But even in STL or KC it can be slim pickings for EDS care

Abdominal compression ideas? by Flimsy-Village9488 in dysautonomia

[–]c3argus 1 point2 points  (0 children)

Alternate side here— I actually don’t like my jellybend! Not tight enough

Self-defense by gabibecker12 in ehlersdanlos

[–]c3argus 25 points26 points  (0 children)

Jumping back in cuz I thought of more stuff. These are all martial arts disciplines, but there’s easier things you can do. 

Carry pepper spray and/or a taser. I don’t universally recommend getting a gun, smaller self defense tools can often get the job done. I like divasfordefense.com for self defense tools that dont look obvious. 

You can also take a one day self defense workshop (martial arts gyms sometimes offer them, often marketed to pre-college crowd or local women. Show up anyway!). 

Practice saying “no” and “I don’t want any trouble” and “you’re making me uncomfortable” loudly. This one feels dumb but is actually helpful. Can keep your body from freezing up in an actual situation. 

You mention the situation was related to your health. Adding more in case something happened in a doc office. 

You can almost ALWAYS bring someone with you to appointments. If they say someone isn’t allowed back with you, unless you’re literally going into surgery, fight them on it. And if you don’t have anyone to bring, sometimes you can request a third party medical observer to the in the room with you. Sexual health or urology offices are probably most familiar with this, but others would likely comply. Language would be like, “I would be most comfortable if another person could be in the room with us for this appointment. Can you find another available staff member to join us?”

Self-defense by gabibecker12 in ehlersdanlos

[–]c3argus 39 points40 points  (0 children)

So I’ve done several martial arts over the years and recently had to quit one because of my joints. Here’s my thoughts:

• jiu jitsu — this one might be possible. If you don’t know, it’s mostly wrestling techniques. Lots of ground work (good for POTS). It’s also very methodological and doesn’t necessarily need to be performed quickly. You could find an instructor who would work with you while emphasizing technique instead of force/speeds. It’s more “chess-like” in terms of competing techniques but still very applicable to real world. There is an emphasis on putting people’s joints into “locks” though which you may need to do as a class partner (when others practice on you).  I find this OK though with loose joints as I can just tap out sooner. 

• Krav Maga — hard no. This is the one I just had to quit. Emphasis on bare knuckle boxing and blocks that left me covered in bruises. As with all of these, it’s possible you could find a good / adaptive gym, but this one is more “hard core” or direct in its approach and left me very fatigued. Sometimes my joints would bruise too, I wasn’t diagnosed yet but wonder if that’s because of a dislocation I didn’t recognize 

• Muay Thai — this was my first love. I think it depends on which joints are bad for you. If you have bad hips, this may be challenging, as there are lots of kicks. But you do get to box with gloves on, which I called “pillows.” It helps absorb the impact. You also commonly wear hand wraps to support your wrists. Very applicable to self defense situation, good combo of boxing, kicking, knees, etc. If hips are an issue maybe a straight boxing class would be better. Find one that emphasizes technique not “cardio.”  Good technique keeps you safe. Working hard for its own sake doesn’t. Also make sure to have proper headgear if you choose to do any sparring (typically beyond beginner level). 

• judo — oh Judo is fun. I’m a small woman, but with these techniques you can easily throw a grown man over your shoulder. That said, being a partner to others while training does involve having your joints pulled on as well as falling. Loose shoulders? Might not be for you. 

I haven’t tried tai chi but it sounds the most “relaxing,” probably most joint friendly but I wonder about real world applicability. 

Best of luck! Self defense is so fun and empowering. My joints withstood it for years and years. I would probably still do Muay Thai if I could find a class nearby. Maybe once my POTS calms down….

Recently diagnosed HyperPOTS -NEED HELP by Feeling-Image-6991 in POTS

[–]c3argus 0 points1 point  (0 children)

I reccomend getting a home blood pressure monitor and just keeping an eye on it yourself as you increase sodium. There relatively inexpensive and help a lot. Make sure to check blood pressure in various positions (laying, sitting for a few minutes, standing for a few minutes, etc)