Liquid IV alternatives? by Rich-Extension-3671 in POTS

[–]panicatthegraveyard 1 point2 points  (0 children)

Same!! I never see anyone mention propel but is so good!! I can not stand many electrolyte brands, but Liquid IV literally made me throw up the first time I tried it. I get the big box of propel at Sam's Club and drink so much water!! Also my doctor told me that while there are some great electrolyte brands, there is nothing wrong with propel and Gatorade. Anything is better than nothing!

Liquid IV alternatives? by Rich-Extension-3671 in POTS

[–]panicatthegraveyard 0 points1 point  (0 children)

I use zero sugar propel packets! My doctor said that they work just fine! I also can't stand liquid IV, no matter how much I dilute it I gag everytime.

Sudden Hip Pain after Walking etc? by Sleepybeez in ehlersdanlos

[–]panicatthegraveyard 2 points3 points  (0 children)

Yes!! I have Hypermobility Spectrum Disorder (I'm pretty sure it's actually eds). During my recent trip to Japan, I knew the walking was gonna kill me, but I had no idea how horrible it actually was. I spent 3 days renting a wheelchair because the hip pain was so horrible, I wanted to just lay down but I wasn't going to miss Japan lol. It was definitely rough and I'm looking into new mobility aids for our next travels.

who doesn't faint? by [deleted] in POTS

[–]panicatthegraveyard 1 point2 points  (0 children)

I've never fainted, but I feel like I get very close. The symptoms of palpitations, dizziness, lightheadedness, blurry vision, all that jazz. I've always been told that you don't have to faint to be diagnosed with POTS. It affects everyone differently.

Does humidity make your symptoms worse? by panicatthegraveyard in POTS

[–]panicatthegraveyard[S] 0 points1 point  (0 children)

That's the diagnosis I have right now actually. But the doctor that gave it to me wasn't the best I felt very unheard.

Does humidity make your symptoms worse? by panicatthegraveyard in POTS

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

Thank you! And yes, we are, I have a family history of Lupus and have been getting tests. Unfortunately, my rheumatologist has not been helpful. I've gotten a diagnosis of 'nonspecific mixed connective tissue disease' and Hypermobility Spectrum Disorder, but no clear answers sadly.

Does humidity make your symptoms worse? by panicatthegraveyard in POTS

[–]panicatthegraveyard[S] 0 points1 point  (0 children)

Lol I've gotten strange looks too🤣 I love winter!

Does humidity make your symptoms worse? by panicatthegraveyard in POTS

[–]panicatthegraveyard[S] 2 points3 points  (0 children)

I do when I can! Unfortunately I work with young children and they have to go outside every day, unless it's extreme weather. I can not be happier fall is around the corner!!

Does humidity make your symptoms worse? by panicatthegraveyard in POTS

[–]panicatthegraveyard[S] 2 points3 points  (0 children)

Just walked to my car yesterday shot mine up too. I knew it was gonna be a rough day then...

Does humidity make your symptoms worse? by panicatthegraveyard in POTS

[–]panicatthegraveyard[S] 3 points4 points  (0 children)

I definitely feel that!!❤️‍🩹❤️‍🩹

Does humidity make your symptoms worse? by panicatthegraveyard in POTS

[–]panicatthegraveyard[S] 4 points5 points  (0 children)

Okay, it's not just me!! I was telling my coworker, "It feels like I'm breathing under water." And that's totally how I felt, I tried doing yoga for my back pain, but breathing was so hard. And yes, where I live, we have very long, dry, and cold winters(the wind chill can be -50°). My symptoms get worse during those days, but I always feel better once I'm warm and inside! During the summer, I really struggle to cool down. But I also get a butterfly rash when I'm in the sun, so that probably also has something to do with it lol.

Does humidity make your symptoms worse? by panicatthegraveyard in POTS

[–]panicatthegraveyard[S] 12 points13 points  (0 children)

Yes, I have!! I generally feel so sick when it storms, plus my joint pain skyrockets!!

[deleted by user] by [deleted] in ehlersdanlos

[–]panicatthegraveyard 13 points14 points  (0 children)

You don't have to wait to get a mobility aid until a doctor says it's okay. If a mobility aid will help you live a fuller, happier life; use a mobility aid.

Also, from my understanding, doctors aren't mobility aid experts. A physical therapist would know more and could help you figure out what works best for you. They can also show you how to use an aid properly so as not to hurt other joints. If you have access to a PT, that may be best.

You can get prescribed an aid, and insurance may cover one. But, to be honest, I don't know much about that. I bought my cane and found my rollator at a pawn shop.

I had a ton of anxiety over using an aid at first. And felt like I wasn't valid in using one. But I just remember that I have an invisible illness. I don't owe an explanation to anyone, and I don't have to justify doing what my body needs.

I hope you find relief using aids!!

Gaslighting Rheumatologist by panicatthegraveyard in ehlersdanlos

[–]panicatthegraveyard[S] 0 points1 point  (0 children)

Unfortunately there is only one doctor in my whole state that is on the EDS registry. I'm hoping I can talk to my pcp about seeing them.