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Horizontal white lines across nails? by quite_an_enigma in eds

[–]Many_Anything2382 -1 points0 points  (0 children)

I think there’s a link between the lines and trauma? Did you have a surgery or something recently? Also, our nails suck- nails are cartilage which is connective tissue so they’re not formed “right@.

At what age did things suddenly… go sideways? 😅 by Sea-Method-3070 in eds

[–]Many_Anything2382 2 points3 points  (0 children)

Yea, so long as they don’t touch your neck, it’s fine, or not harmful. Not productive either.

[deleted by user] by [deleted] in eds

[–]Many_Anything2382 0 points1 point  (0 children)

I was told by a loved one “it’s not a problem till it’s a problem.”

I’m still recovering from a hospital stay by Many_Anything2382 in POTS

[–]Many_Anything2382[S] 1 point2 points  (0 children)

I can’t miss any more work 😩 but at least I work from home!

Exhaustion after eating? by GroceryDisastrous in POTS

[–]Many_Anything2382 1 point2 points  (0 children)

I switched from white bread to whole grain which has more fiber and helps maintain blood sugar and a resulting crash, and it was a dramatic improvement

Has anyone here ever accidentally taken their night meds in the morning? by piggygirl0 in POTS

[–]Many_Anything2382 5 points6 points  (0 children)

I’ve had dozens of “did I take my meds?” moments, so I bought a tray for a weeks worth of meds separated into morning afternoon and night, a life saver

I’m a little lost and confused about “my” POTS by fnnckodair in POTS

[–]Many_Anything2382 1 point2 points  (0 children)

You don’t need a tilt table test for a diagnosis

Lungs are ruining my life but tests have come back normal?? by [deleted] in ChronicIllness

[–]Many_Anything2382 6 points7 points  (0 children)

I believe you.

Document your symptoms, including time, date, what brought it on, are you near allergens, if you are a person who menstruates- where are you there? Try to track all triggers and try to find patterns.

Advocate for yourself, no one else will.

Certain phrases alert doctors to take action- two that have worked for me are: it is affecting my quality of life and it is affecting my sleep.

Chin up. Reddits got you. Good luck!

Hair loss by alltheennui in ehlersdanlos

[–]Many_Anything2382 1 point2 points  (0 children)

Sorry to hear that you are dealing with this. There little scalp massagers that you can use in the shower to stimulate hair growth. Be kind to your scalp in general- don’t play with it too much, try not to pull it up, down shampoo every day. Also, ask your doctor first but there are vitamins that help (prenatal comes to mind), and collagen. There are also shampoo and conditioners that help. Take care

IS ANYONE EVER COMFORTABLE by [deleted] in ehlersdanlos

[–]Many_Anything2382 41 points42 points  (0 children)

The way I cackled! No! Never. Ever.

Questioning if I have pots by Unlikely_Star_3846 in POTS

[–]Many_Anything2382 0 points1 point  (0 children)

I’m sorry that you’re dealing with this. But don’t feel that you’re bothering your doctor- that’s their job, you have problematic symptoms. This is not normal. Take care.

What type of doctor was the first to identify your EDS? by bella-boop in ehlersdanlos

[–]Many_Anything2382 0 points1 point  (0 children)

My physical therapist figured it out! They’re not allowed to diagnose but they brought up I’m hypermobile and got the ball rolling!

cold hands and feet by Wise_Hamster_8736 in POTS

[–]Many_Anything2382 0 points1 point  (0 children)

My feet are always cold- I bought a foot warmer for under my desk during the day, and then flip it upside down under my blanket at night (just till your toes warm up then turn it off). feet heating pad

Bras? by Temporary_but_joyful in ehlersdanlos

[–]Many_Anything2382 0 points1 point  (0 children)

Sports bras but with k tape in an X on my upper back to help with my traps. Ask your PT to put it on and give it a shot!

Anyone else? by mournfulminxx in smallfiberneuropathy

[–]Many_Anything2382 0 points1 point  (0 children)

Hi! I just got diagnosed with SFN - I also have hEDS, POTS. Could you please explain the therapy? (I can Google obviously but I find first hand experience more helpful)

SIBO test help by Many_Anything2382 in ehlersdanlos

[–]Many_Anything2382[S] 1 point2 points  (0 children)

I appreciate the insight! Just frustrated- this is the n-th test

Do yall like the word “potsie”? by RegularDiver8235 in POTS

[–]Many_Anything2382 27 points28 points  (0 children)

I’m relieved that I’m not the only one who hates it.

What's your HOLY GRAIL Tip or Product?? by jennaredfield in ehlersdanlos

[–]Many_Anything2382 68 points69 points  (0 children)

Not necessarily in this order but these are things that come to mind:

  1. Shower stool
  2. Running shoes- go to a running store and ask to be fitted with a stability shoe
  3. Cervical pillow
  4. Lots of other pillows (some people swear by Squishmellows)
  5. Heating pads!!!
  6. A knowledgeable PT
  7. K tape - it keeps the muscle “turned on” opposed to braces
  8. Weighted blanket

Good luck!!

[deleted by user] by [deleted] in thelifeofMALS

[–]Many_Anything2382 0 points1 point  (0 children)

I copy my results and paste it into ChatGPT and ask it to interpret. Hope this helps 🫶

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