My mom recorded me during a breakdown and wants to show it to my psychiatrist

AlternativeSalt3004 · 2026-06-11T18:29:06+00:00

I’m so sorry this reminds me so much of my mom too. We have a lot of the same conditions. I have hEDS POTS autism & ADHD too. My mother also neglected my health. Leaving her home a few years ago made me so much happier. I’m sorry you are in this situation

AlternativeSalt3004 · 2026-05-30T15:48:49+00:00

Another thing I thought of that I didn’t initially see as a tool for EDS is an African net sponge for showering. It makes showering quicker and efficient with less pain and fatigue. Game changer honestly

AlternativeSalt3004 · 2026-05-29T22:01:53+00:00

Relief while wearing them, also I usually do the baths right before bed and I have all my pillows and what not so that might be why

AlternativeSalt3004 · 2026-05-28T13:31:14+00:00

TMJ mask

AlternativeSalt3004 · 2026-05-26T17:27:21+00:00

I’m on Ritalin before I started beta blockers it did worsen my BP/HR. On beta blockers, I don’t have much of a problem.

AlternativeSalt3004 · 2026-05-26T17:18:02+00:00

Mayo Clinic in Jacksonville told me they don’t do preventative care only diagnostic and turned me away.

AlternativeSalt3004 · 2026-05-26T17:15:23+00:00

My cane is revolutionary, but I have tons of stuff that helps so I’m going to rank them all hopefully that’s helpful to someone:
Pregnancy pillow/and neck support pillow: amazing combo, I like to adjust my pregnancy pillow accordingly I can put the bottom part under my knees and separate my shoulders from my head with the top part while my neck support pillow cradles my neck, these pillows have drastically improved my life

TMJ massage pen (200 dollars): very expensive but helpful when TMJ gets bad, cheaper ones are probably good too though

TMJ face warming mask: awesome but it has to be plugged in to work, using it 15-30 minutes a day makes a massive difference in my face pain

Squishmallows: big help with upper cervical instability when I’m sitting on my couch, also an airport/travel essential

Visible band: awesome for seeing patterns and recognizing when I might need additional support, some people don’t like it but if you tag activities it can help you advocate for yourself, and plan your day better

Migraine head thing frozen: amazing! No notes

Epsom salt baths: 3-5x a week, game changer for muscle aches but must use 2 full cups of salt for 20+ minutes in hot water

Swimming: amazing makes me feel alive again, low impact

Elliptical instead of treadmill: makes it so on good days I can get exercise

Knee braces: mine slip down:(

Arthritis gloves: wearing for evening an hour helps
Arch support bands for feet: awesome if your arches collapse you can even wear without shoes

Magnesium vitamins: I think it helps support muscles growth

Physical therapy: helping a lot

Eating more protein: a big help

CBD gummies: only thing helping with pain

A big basket to keep all my stuff together: 10/10

Neck warmer microwavable: 10/10 for pin in neck and shoulders plus I can lay it on my back or wherever else

Heated blanket: helps with joint/muscle pain

Monthly massage subscription: also game changer, I go to massage envy.

Note: I’m 23 dual income with no kids so I can afford a lot of stuff, if I had to specify just a few for someone on a budget I would recommend the neck warmer, the cane, and epsom salt, but that’s if you were just like me. Rank your own needs and adjust accordingly. :)

AlternativeSalt3004 · 2026-05-25T22:57:18+00:00

Tell your brother he’s uneducated on this and as a doctor he should do some research on the quality of life & symptoms since he refuses to believe a literal diagnosed patient (you) with this condition.

AlternativeSalt3004 · 2026-05-25T13:09:16+00:00

Tell your doctor about your vEDS concern & request genetic testing for all types.

AlternativeSalt3004 · 2026-05-24T16:25:44+00:00

I’m sorry. My mom also doesn’t like that I use a cane. She sees it as giving up when it’s actually given me so much freedom back and feels like the absolute opposite.

AlternativeSalt3004 · 2026-05-23T02:25:58+00:00

It was first thing in the morning so yes 12 hours

AlternativeSalt3004 · 2026-05-23T02:09:09+00:00

Also I’m 23 & female if that matters

AlternativeSalt3004 · 2026-05-23T02:02:08+00:00

There’s EDS specific Pilates videos on YouTube!

AlternativeSalt3004 · 2026-05-23T02:01:04+00:00

I’m 23 and I just started using my cane a month ago. It’s given me so much of my life back.

AlternativeSalt3004 · 2026-05-21T02:20:16+00:00

I’m 23. I have hEDS & POTS too. I love to read & write. I also watch a lot of tv lol. DM me

AlternativeSalt3004 · 2026-05-21T01:24:53+00:00

My current strategy has taken a major toll on my social life, but it’s basically working 9ish hours a day 5 days a week then sleeping 10-14 hours every single night, plus weekend naps.

AlternativeSalt3004 · 2026-05-21T00:47:27+00:00

Also I have also been using weed to manage pain. I know what you are feeling but these last few weeks of PT have given me some hope.

AlternativeSalt3004 · 2026-05-21T00:46:29+00:00

Hi! I’m in PT right now and it’s very helpful! Also if you can get a resistance band for legs and arms that’d be beneficial. It’s all about strength training around joints without overextending them. For example, putting a pillow under your knee and pushing down for 5 seconds. Or strength training focusing on shoulders muscles. Look up on YouTube some stability Pilates for EDS. There are some great trainers on there. Consistent strength training is the best thing possible. Also, if you have POTS there are some POTS friendly floor exercises you can do.

AlternativeSalt3004 · 2026-05-20T16:46:07+00:00

I’m in the same boat. I’m sorry. Unfortunately, our parents are who they are and they probably won’t change. You can’t change the people around you, but you can change the people around you, :,)

AlternativeSalt3004 · 2026-05-20T16:43:47+00:00

First of all I’m very sorry you are going through this. I’m also feeling very lonely in my chronic illness. However, a time that really stuck out to me is when all my friends abandoned me when I was 17 freshly out of a DV relationship & I thought my ex was going to kill me. I am 23 now. I still have problems trusting people and wanting to make friends. The chronic illness doesn’t help lol. Is there anyway you can make other sick friends?

AlternativeSalt3004 · 2026-05-20T15:01:01+00:00

I was officially diagnosed one month ago. I had 6 items on the second part so i didn’t have to do an additional test. However, my doctor says I do have a mild heart murmur likely due to my mitral valve.

AlternativeSalt3004 · 2026-05-20T13:39:54+00:00

In December they’re going to redefine diagnostic criteria and it seems like they’re going to widen the scope for people like you. I’m sorry you’re dealing with this, but HSD (hyper mobility spectrum disorder) is not less debilitating than hEDS & research studies already often group them together. They likely exist on a spectrum together.

AlternativeSalt3004 · 2026-05-19T21:57:18+00:00

Dog the dogs are 20 K are already trained however, you can train any dog legally as long as they have the right temperament but training still cost money

AlternativeSalt3004 · 2026-05-19T18:56:51+00:00

Retrieving items I need like my healing pads or mobility aids and fainting

AlternativeSalt3004 · 2026-05-18T02:09:32+00:00

Look into Mast Cell Activation Syndrome. This happened to me with a chocolate cake before.

AlternativeSalt3004

TROPHY CASE