3

votes

all connective tissue disordered folks sign in here

Answered on August 19, 2014
Created December 09, 2011 at 1:22 AM

ie. ehlers danlos, marfans, etc.

i want to befriend you.

293ba4c95d190bc616b27d85b10d705a

(661)

on December 25, 2012
at 02:58 PM

I have a pigeon chest too .. I think it contributes to me being a neck breather. Pilates really helped with that!

293ba4c95d190bc616b27d85b10d705a

(661)

on December 25, 2012
at 02:56 PM

Drinking less water (POTS had me over hydrated and drinking too much!!) And eating a lot of salt helps. I drink salt lemon water a lot

293ba4c95d190bc616b27d85b10d705a

(661)

on December 25, 2012
at 02:54 PM

Sorry I'm on my phone. Will post more later

293ba4c95d190bc616b27d85b10d705a

(661)

on December 25, 2012
at 02:53 PM

I have not had the actual collagen test but they suspect eds Magnesium has helped me by far the most !!! You should see where you fall on the Brighton beighton (?) scale. I'm 8/9 Gf didn't help me at all. Stabilizing my bs and eating more vegetables and lower carb did. Physical therapy helped me the most (google dr. Evan osar). I have to do Pilates and stability sxercises every day or I fall apart

293ba4c95d190bc616b27d85b10d705a

(661)

on December 09, 2011
at 04:00 PM

yes! i didn't realize that was you. i know ALL about posture and pain now.

293ba4c95d190bc616b27d85b10d705a

(661)

on December 09, 2011
at 03:57 PM

hi! has paleo helped your connective tissues at all?

25b139cc1954456d9ea469e40f984cd3

on December 09, 2011
at 06:09 AM

You called my name?

21fd060d0796fdb8a4a990441e08eae7

(24543)

on December 09, 2011
at 01:52 AM

and at some point, i really have to get something up about this...http://paleohacks.com/questions/28181/paleo-and-pain-which-issues-are-you-interested-in-nightshades-bone-broths-pu#axzz1fzwytqvj

21fd060d0796fdb8a4a990441e08eae7

(24543)

on December 09, 2011
at 01:51 AM

oogie boogie. i feel for you. paleo hasn't helped with connective tissue stuff, but i haven't tried hard enough. like if i start something new and it doesn't help within a week, i tend to get disgruntled and ditch it. not sure if you've read paul jaminet's book, but few know more about micronutrients than him.

293ba4c95d190bc616b27d85b10d705a

(661)

on December 09, 2011
at 01:34 AM

hi! i have eds too! i'm weaning myself into paleo. have you had a positive experience? has it helped with any connective-tissue stuff? i'm trying to control my blood sugar and POTS and i found out i had severe nutrient deficiencies which led to a lot of nerve pain.

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5 Answers

2
21fd060d0796fdb8a4a990441e08eae7

(24543)

on December 09, 2011
at 01:26 AM

Hi friend, Ehlers-Danlos here!
Never thought I'd see another in the paleosphere.

21fd060d0796fdb8a4a990441e08eae7

(24543)

on December 09, 2011
at 01:52 AM

and at some point, i really have to get something up about this...http://paleohacks.com/questions/28181/paleo-and-pain-which-issues-are-you-interested-in-nightshades-bone-broths-pu#axzz1fzwytqvj

21fd060d0796fdb8a4a990441e08eae7

(24543)

on December 09, 2011
at 01:51 AM

oogie boogie. i feel for you. paleo hasn't helped with connective tissue stuff, but i haven't tried hard enough. like if i start something new and it doesn't help within a week, i tend to get disgruntled and ditch it. not sure if you've read paul jaminet's book, but few know more about micronutrients than him.

293ba4c95d190bc616b27d85b10d705a

(661)

on December 09, 2011
at 04:00 PM

yes! i didn't realize that was you. i know ALL about posture and pain now.

293ba4c95d190bc616b27d85b10d705a

(661)

on December 09, 2011
at 01:34 AM

hi! i have eds too! i'm weaning myself into paleo. have you had a positive experience? has it helped with any connective-tissue stuff? i'm trying to control my blood sugar and POTS and i found out i had severe nutrient deficiencies which led to a lot of nerve pain.

1
59eb750a125e920d12e7895582c6abfb

on December 24, 2012
at 03:49 AM

Ehlers-Danlos over here! :)

1
39311794c054f89a226f33e1afd08721

on December 23, 2012
at 05:29 PM

Hi, Ehlers-Danlos here. I answered one other question with a lot about it.

So far, I can sing the praises of what going gluten-free has done to improve my EDS, I'm still figuring out paleo.

1
B121fdbc1aaa6130f5bda3bf84e3ba2d

(952)

on December 23, 2012
at 09:15 AM

Hey! I seem to have a mild version of connective tissue disease.

Manifestations: mild mitral valve prolapse, mild hemangiomas on liver, and physical signs, such as absense of ear lobes, ability to twist a tongue, pigeon chest, soft ears.

Please, share your findings!

  1. Have you been officially diagnosed?
  2. Have you run genetic tests to figure out particular collagens that you have problems with?
  3. Have you found a good doc or online source of information?
  4. What lifestyle changes and/or supplements helped you the most?

Thanks!

293ba4c95d190bc616b27d85b10d705a

(661)

on December 25, 2012
at 02:54 PM

Sorry I'm on my phone. Will post more later

293ba4c95d190bc616b27d85b10d705a

(661)

on December 25, 2012
at 02:56 PM

Drinking less water (POTS had me over hydrated and drinking too much!!) And eating a lot of salt helps. I drink salt lemon water a lot

293ba4c95d190bc616b27d85b10d705a

(661)

on December 25, 2012
at 02:58 PM

I have a pigeon chest too .. I think it contributes to me being a neck breather. Pilates really helped with that!

293ba4c95d190bc616b27d85b10d705a

(661)

on December 25, 2012
at 02:53 PM

I have not had the actual collagen test but they suspect eds Magnesium has helped me by far the most !!! You should see where you fall on the Brighton beighton (?) scale. I'm 8/9 Gf didn't help me at all. Stabilizing my bs and eating more vegetables and lower carb did. Physical therapy helped me the most (google dr. Evan osar). I have to do Pilates and stability sxercises every day or I fall apart

0
Bc51ed51f8942bed55611c0d8140c9e8

on December 25, 2012
at 03:23 PM

https://www.facebook.com/groups/2210965239/ is a very active EDS group :) https://www.facebook.com/groups/377716395655796/ good group, i post there also

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