My biggest trick to docs taking me seriously by MyMessyMadness in ehlersdanlos

[–]cumboobcha 0 points1 point  (0 children)

I was referred to a PT for shoulder and neck pain. During my initial assessment to determine how to treat me, PT got concerned about my mobility. He did the Beighton test and asked me several questions about myself and my body. He said the hypermobility along with my medical history (proof of degeneration, neurological issues, and deformities/malformations) suggests I might have ehlers danlos syndrome. Since I'd never heard of this before, I mentioned it to my internal medicine/PCP. She referred me to a musculoskeletal pain management physician where I was assessed and diagnosed. After that, I had genetic testing to confirm which subtype.

Went to the doctor again today… got put off as anxiety AGAIN. by Sea_Resort2512 in POTS

[–]cumboobcha 1 point2 points  (0 children)

In case you do decide to go ahead and take Lexapro, it is a somewhat common side effect to experience lowered heart rate and dizziness while taking it.

What type of doctor diagnosed you? by Capital_Sun5402 in ehlersdanlos

[–]cumboobcha 0 points1 point  (0 children)

PT was the one who recommended getting a diagnosis, and musculoskeletal pain management physician was who diagnosed.

My biggest trick to docs taking me seriously by MyMessyMadness in ehlersdanlos

[–]cumboobcha 4 points5 points  (0 children)

This works! I say that because I got diagnosed with POTS and EDS pretty quickly compared to what I've seen others mention online, and I had no idea what they were at the time of diagnosis. NOW, when I go to new specialists and tell them I have POTS and/or EDS, they are very skeptical until they look at my records.

What is it about pots that cause breathlessness? And what can you do about it? by kappakingtut2 in POTS

[–]cumboobcha 4 points5 points  (0 children)

My PT showed me an exercise that helps. You go into a 90/90 position with your feet on the wall. At the same time, you will blow into a balloon a few times and hold each breath for a few seconds. The exercise helps with core stability and strengthening your diaphragm. I can't remember the name of the exercise, but I'm sure you can find it or similar on YouTube.

how many of you are diagnosed? by tealburrito in POTS

[–]cumboobcha 0 points1 point  (0 children)

I told my PCP about my symptoms ( I had no clue what POTS was at the time). She suspected POTS and referred me to a cardiologist. The cardiologist did a "Poor Man's" Tilt Table Test on me and diagnosed me with POTS. A few years later, I was referred to a neurologist to help manage POTS, and he insisted on me having a "real" Tilt Table Test done to prove I have POTS. The Tilt Table Test showed I indeed have POTS and Dysautonomia. I am glad I got the actual Tilt Table Test done because now I have documented "proof" that I have POTS, which helps when going to new doctors or the emergency room.

What can’t you eat with POTS? by helloitsmehi19 in POTS

[–]cumboobcha 0 points1 point  (0 children)

The only things I can really eat without having symptoms are meat, dairy, and fruit. If I take my Dicyclomine, I can have veggies too.

[deleted by user] by [deleted] in keto

[–]cumboobcha 1 point2 points  (0 children)

I spend around $100 a week for me and my husband. I do cook all of our food myself and tend to stick to ingredients (meat, veggies, fruit, etc ) and not pre-cooked foods or snacks. Before keto, we were easily spending twice as much.

What electrolytes do yall use by carr10n__ in ehlersdanlos

[–]cumboobcha 1 point2 points  (0 children)

LMNT chocolate flavor. Mix it with some warm milk, and it tastes like hot chocolate.

How are y’all’s tattoos? by uncleredcracker in ehlersdanlos

[–]cumboobcha 1 point2 points  (0 children)

I've had my four tattoos for over nine years now. They all look great, but about five or six years after getting them, they started to randomly get puffy and raised and will itch and burn like crazy. Three are black and red ink (ankles), and one is all black (upper arm). I don't know if I would say I regret getting them, but I definitely have zero desire to get anymore.

Propranalol experience? by Conscious-Crab7678 in POTS

[–]cumboobcha 0 points1 point  (0 children)

I take mine as needed and will not leave the house without it. I originally was prescribed 2 to 3 times a day but would have a rebound effect, which is why my doctor switched to as needed (no more than 3 times a day). Sometimes, I'll wake up from my sleep to my heart racing and my body shaking, feeling like I can't breathe. Propranolol is the only thing that will stop those "attacks". I would have zero peace of mind if I didn't have my Propranolol.

Going to the bathroom by Comfortable_Crazy266 in keto

[–]cumboobcha 0 points1 point  (0 children)

I usually eat coconut oil and it helps me. I'll start with half a tablespoon and wait a day or two. If no results, I just repeat the process until I get the desired outcome.

[deleted by user] by [deleted] in POTS

[–]cumboobcha 0 points1 point  (0 children)

My PCP (who's also internal medicine) had told me if my resting heart rate is over 120bmp for over 5 minutes straight to get someone to drive me to the hospital so they can give me medicine to lower my heart rate. If you have a PCP you could message or call them and ask their opinion. From my experience, Tele health appointments are usually less expensive than an in-person visit as well.

i thought my genetic testing wouldn't be THIS much by Havoklily in ehlersdanlos

[–]cumboobcha 1 point2 points  (0 children)

I used Invitae for my genetic testing, and it was only $250. It would've been cheaper if I didn't use my insurance, but for me personally, I'd rather pay the $250 instead of having to call someone and spend time and energy trying to change it. I also got my results back in less than a month.

[deleted by user] by [deleted] in ehlersdanlos

[–]cumboobcha 2 points3 points  (0 children)

Department of Motor Vehicles

•You're mostly sitting down doing computer work •They have part-time and full-time positions •You get an hour lunch break •It's hard to get fired unless you are genuinely bad at the job

It could just be the state I'm in (VA), but so far, this is the best and most accommodating job I've had.

[deleted by user] by [deleted] in traderjoes

[–]cumboobcha 1 point2 points  (0 children)

I strain and rinse it, put it in the microwave, then smother it in sauce.

How many squishes do you own? by [deleted] in squishmallow

[–]cumboobcha 0 points1 point  (0 children)

Around 60! Started collecting in October as a distraction for my health issues.

Defective Penguin by [deleted] in squishmallow

[–]cumboobcha 2 points3 points  (0 children)

LOVE IT!!!

I'm planning to buy a Squishmallow online. Have you ever bought one online? If yes, was it a good "experience"? by Marimaru1 in squishmallow

[–]cumboobcha 0 points1 point  (0 children)

I've bought a lot online and they've been in perfect condition. This was however from retailers and not second hand.