u/Pibblegirl01 — reddlx

Is it aEDS?

I'm going to MAYO in two weeks because there is not one doctor that knows connective tissues where I am. So much medical trauma going on right now.

So, I've been on the idea that I have hEDS but, the more I dig and more medical records I get I'm starting to get worried it is aEDS. Here are a very high level of issues:

Born with two dislocated hips

A lot of vascular (Celiac aneurysm, hernias) Cardiovascular issues (Mitral valve prolapse w Regurgitation, family history of Aorta Aneurysm and dissections)

GI issues (Gastroesophageal flap valve Hill grade III treatment - completely gone)

Lots of subluxations but not dislocation?

Issues with opening legs because of hips

Then all the normal hEDS stuff.

Is this something I should dig into more.

I have my genetics but its so open ended. Like one parent, one mutation in the COL1A1 or COL5A1.

I found one but it is harmless, so I'm guessing that one is in the normal population.

So confused and overwhelmed.

u/Pibblegirl01 — 2 days ago

▲ 1 r/ehlersdanlos

Itchy

I need help finding braces and compression garments that are soft and not abrasive.

I have a slipping rib but the rib brace is way to scratchy and causes me not to wear it.

Is there autistic, adhd friendly braces or compression leg wear that really work for us.

I hope I'm not the only one facing this dilemma.

reddit.com

u/Pibblegirl01 — 12 days ago

▲ 30 r/savannah

Birds, birds, birds...

Even though I've been physically assaulted by blue jays and mockingbirds alike... Even though they have made me look like an idiot while running and flailing my arms frantically. I do care for all living creatures.

Does anyone know about birds? We have this baby our dog found and not sure if it is a fledgling trying to fly.

Luckily my dog is more worried than hungry, I just don't want it to die or be hurting in any way.

Please help!

Edit: just wanted to say thanks to everyone! The baby was gone when we went to check it and the parents were finally quiet.

u/Pibblegirl01 — 25 days ago

▲ 22 r/Sinusitis

What i figured out on my own, I diagnosed and treated myself.

7 months after covid I got really sick, it's been 1.5 years since this all started. After being shunned by almost every doctor because all of it was complex, i was diagnosed with hEDS. I believed that my NAR was setting off a bunch of reactions, including nerves, throughout my body.

I would go to ENT after ENT. I was always clear.

This was the cycle. It takes 2 to 3 months for an ENT appointment here, i would be so miserable that I would go to urgent care and get steroids and antibiotics. Then when my appointment would come I'd be clear. This was nonstop and no one believed i had an issue. I was told it was all in my head in an appointment that was 10 mins. Finally one time I suffered and they saw the major staph infection i had.

After we got rid of that, I still had issues. With hEDS, most have comobilities of MCAS. So I was wondering if it was mast cells causing the issue. I was so dry and inflamed, mucus was pouring down my throat but nothing in my sinuses. I could feel a drop of nasal spray, saline, or mucus in my sinuses. I couldn't sleep until I spent hours trying to get that drop out of my sinuses.

So, with mast cells, you use cromolyn sodium. I got a bottle of Nasalcrom because I think that is the only OTC.

Wouldn't you know it, 4 days later I woke up and could breathe. I was completely clear. I'm not better but it's under control. I haven't seen many people talking about this so I wanted to share.

I take Nasalcrom, Gaviscon Advance, and Ipratropium bromide spray. I only do irrigation a couple times of week because it dries me out and gets into my front sinuses.

I hope this might give yall something else to try. It's amazing what mast cells do and that it us causing a lot of issues since covid. I'm not sure why the medical system hasn't caught up.

reddit.com

u/Pibblegirl01 — 1 month ago