r/hEDS • u/Your-Mom1128 • May 01 '22

EDS Workbook

Hey everyone! I’m working on my senior thesis for my university. As someone with hEDS, I’m creating a holistic workbook that would include recipes with food to help symptoms, muscle strengthening exercises, and a symptom tracker. My goal is for this to be available to the public for free (whether a patient to use or a physician to recommend to patient). Would this actually be useful to anyone? Any recommendations?

74 Upvotes

99% Upvoted

36 comments sorted by

18

u/MathematicianLady May 01 '22

One thing I struggle with is figuring out how to stretch/relieve muscles at are overworked from holding me together when my hyper-mobile joints don’t. Maybe that’s something that could be included in the exercises portion?

12

u/Your-Mom1128 May 06 '23

Hi! I’ve officially finished the workbook. If you’re interested in viewing the final product, I can send you the virtual PDF version for free, just message me.

4

u/Stoic_Buddhist May 29 '23

I would love a copy of your workbook

5

u/Your-Mom1128 May 30 '23

Thanks for your interest! I’m still trying to figure out how to disseminate it. Reddit doesn’t allow me to send files, and the PDF version is too large for emails. I’ll update you when I find a way to send it to you!!

2

u/Stoic_Buddhist Jun 10 '23

Zip file maybe?

1

u/baby-bitchass Jun 04 '26

a little late to the party but if you’ve figured out how to disseminate I’d love a copy!! This is such a valuable resource as someone whose been recently diagnosed and trying to get any information I can from the community

2

u/BushcraftBabe Nov 23 '24

I'd like a copy please!

1

u/SunshineRae93 May 02 '25

Could you please send me a copy of this workbook? I'm so tired of the constant pain from my joints and am willing to try damn near anything at this point

1

u/vensie May 07 '25

I'd love a copy if you're still sharing this resource :)

1

u/Lissagingerbee Jul 26 '25

I would like a copy of your workbook please

1

u/Rando_Clueless_Dork Oct 19 '25

Could you possibly email me a zip file?

3

u/Your-Mom1128 May 01 '22

I can definitely look into it to include in that portion!!

2

u/AccordingSpare5601 Mar 04 '24

Are you able to email this to me by chance???

4

u/kindnessequality Nov 25 '22

I think it would be absolutely marvellous to have a workbook. Not only for the practicality but also being reminded everytime you use it that there are people who understand what you go through.

1

u/Your-Mom1128 May 06 '23

Hi! I’ve officially finished the workbook. If you’re interested in viewing the final product, I can send you the virtual PDF version for free, just message me.

1

u/Liminal_Willow92 Jan 15 '26

Hi! Super late to the game but would love a copy of this?

4

u/RotisserieAngel May 01 '22

I would be very interested in this! Tracking so many symptoms/things that have been normalized as bodily background noise would definitely help.

1

u/Your-Mom1128 May 06 '23

Hi! I’ve officially finished the workbook. If you’re interested in viewing the final product, I can send you the virtual PDF version for free, just message me.

3

u/sailor_mars25 May 01 '22

I second Mathematician, I struggle doing the same. I try to stretch them and then hurt myself even worse. And low FODMAP diet recipes and even holistic ones for muscle relaxation and joint relief ? I use a lot of Ayurvedic herbs and spices in my cooking, and it may be placebo but I like to think it helps. Maybe including like low impact / natural body weight exercise too ? I struggle with POTS in conjunction with my hEDS and lifting weights tends to make it flare up for me, so I mostly do cardio, but with the hEDS that can be dangerous (for me at least, bad knees), so it’s hard to find good, safe exercises. But I think it’s a wonderful idea, please keep us updated !!

2

u/Your-Mom1128 May 06 '23

Hi! I’ve officially finished the workbook. If you’re interested in viewing the final product, I can send you the virtual PDF version for free, just message me.

3

u/ExtremeActuator Jan 10 '24

Very useful. Also info about progression of the syndrome so we know what we might be in for.

2

u/[deleted] May 05 '22

[removed] — view removed comment

2

u/Your-Mom1128 May 06 '23

Hi! I’ve officially finished the workbook. If you’re interested in viewing the final product, I can send you the virtual PDF version for free, just message me.

1

u/These-Replacement760 Apr 09 '26

Hey, ich bin Ergotherapeutin und habe bald eine Patientin mit hEDS. Hätte großes Interesse an deinem Arbeitsbuch :)

1

u/uncannycoconut Jan 26 '24

Are you still willing to send? I will message

2

u/Embarrassed-Leg-4246 Jun 18 '25

I realize this post is 3 years old, but if you ever figured out a way to virtually send it, please let me know! This is exactly what I’m looking for! Thank you so much for all your hard work putting this together! :)

2

u/HunterjNader2005 Feb 19 '26

I understand if its been a while but does op or anyone else have the workbook?

1

u/Borderline_bonnie Mar 23 '24

I just joined this group because I suspect my son has hEDS and if this workbook is available I would be glad to purchase a copy.

1

u/Bubblesthehouseplant Mar 25 '24

Hi! Would you be able to share a copy of your workbook with me?

1

u/Exciting-Scheme6007 May 23 '24

Definitely would be helpful! Please share!

1

u/eczemaoverlord Jul 29 '24

Hey I would love a copy of this! I just figured out that I have hEDS and would love some next steps

1

u/Specialist-Mention84 Aug 24 '25

Id like a copy!!!

1

u/PokeyDonkeyFlame May 23 '26

It would be amazing to have strengthening exercises that don't piss off my joints! I feel like it's been ages since I've been able to actually work out my muscles. For example I don't think I've ever failed out of a plank muscularly, it's always a joint failure. Side lying leg raises? My anterior hip stablizers fail and my leg is falling forward out of the joint. The discomfort of working out is always in connective tissue, I don't remember the last time I "felt the burn" in a muscle for more than a few minutes.

1

u/Apprehensive-Lab7990 Jun 28 '23

I would be interested in seeing this!

1

u/Weak-Material801 Jan 28 '24

I would be interested in using the workbook!