[caroline-margaret]

This surgery saved my life. So happy I went through with it. I've been able to eat and digest food, sit up, and many other basic functions. My fusion scar is turning out really nice. Hopefully those EDS skin symptoms don't change it.

[blackjackwannabe-deactivated201]

Time: 12 Minutes Equipment (OPTIONAL): Wall or other support Work: 30 Seconds Rest: 10 Seconds Exercises: 6 Rounds: 3

Front Leg Lift (Left)

Front Leg Lift (Right)

Opposite Toe Touch (Left Hand to Right Foot)

Opposite Toe Touch (Right Had to Left Foot)

Kickback to Side Lift (Left)

Kickback to Side Lift (Right

PLEASE DO NOT FORCE YOURSELF TO DO ANY MOVEMENT YOU ARE NOT COMFORTABLE WITH. You can find alternatives to the exercise, skip over the exercise, or you are welcome to contact me for suggestions.

This is a slower pace workout, but it will still work the muscles very well. In the modified version, I am holding onto the wall for support. The eventual goal is to build up the deep muscles (“balancing muscles”) enough to not have to rely on the wall. Do not rush to complete as many reps in the given time frame - take your time to complete each exercise and work on taking longer during the balancing portion to improve the muscles. 

Keep reading

[spoonsandstripes]

What is Ehlers-Danlos Syndrome (EDS) and could I have it?

When to suspect EDS (in plain English!)

So you think you have EDS (good overview of symptoms associated wtih EDS)

Symptoms and associated conditions of EDS hypermobility type (many will apply to other types as well). This is a great resource, especially if you are new to EDS. It is written in plain English, and all the conditions are explained

Getting diagnosed/dealing with doctors

Beighton scale (note a positive beighton test does not mean you have EDS, and a negative does not necessarily mean you are not hypermobile. This is just one factor in a complex diagnosis)

Brighton score (used for diagnosing hypermobile type)

Genetic testing?

How to prepare for your appointment

Getting the most from your appointment

Preparing a medical history

Being your own advocate

EDS “bill of rights” (if your doctor is not doing these things it’s a big red flag that you should find someone else)

Suggested medical workup for those traveling to see EDS specialists  (you can save precious time & money by having these results before your appointment and will likely have a much more useful session) 

Hypermobility vs joint hypermobility syndrome (JHS) vs EDS?

When does hypermobility become a problem?

Are EDS hypermobility type and joint hypermobility syndrome (JHS) the same thing?

Hypermobility and illness discusses how hypermobility is associated with ill health, and what might suggest something like JHS or EDS is at play

EDS and low beighton score?

Study that showed poor collagen in people with low beighton score EDS and JHS

Study that showed tendon retraction is common in people with EDS (especially children) causing a falsely low beighton score

About EDS types:

(Note - hypermobile and classical EDS are by far the most common, and probably account for about 90% of all EDS cases)

Hypermobile type EDNF , EDS UK,GeneReviews (most in depth, but written for medical professionals and harder to read)

Tenascin X deficient EDS (previously considered a subset of classical or hypermobile type) EDS UK

Classical type EDNF , EDS UK,  GeneReviews

Vascular type EDNF , EDS UK, GeneReviews

Types with less than 100 reported cases worldwide

Kyphoscoliotic Ehlers-Danlos syndrome EDNF, EDS UK

Dermatosparaxis Ehlers-Danlos syndromeEDNF, EDS UK

Arthrochalasia Ehlers-Danlos syndromeEDNF, EDS UK

Other hereditary connective tissue disorders

Marfan syndrome

(the marfan foundation link)

Osteogenesis Imperfecta

(OI foundation link)

Loes-Dietz Syndrome

(national foundation link)

Stickler Syndrome

Other related disorders

Vascular EDS resources

EDNF vascular resource guide

Ritter rules (life saving rules designed to help recognize, treat and prevent thoracic aortic dissection)

Condensed list of life saving procedures in the ER, during emergency surgery, and post operatively

Understanding vascular complications

clinical reference guide, vascular type

Online vascular EDS support groups

Special precautions for EDS

Why to avoid Fluoroquinoles Antibiotics unless absolutely necessary

A paper explaining that many EDS patients do not respond to local anesthetics. Useful if your Dr does not believe you!

Guide for emergency room doctors

How to decide on what treatment to pursue for your joint problems (especially surgery)

how to handle fragile EDS skin, poor healing, and easy scarring during surgery

Printable wallet card for EDS

Surgery in EDS (especially vascular type)

EDNF medical resource guide

Recommendations for anesthesia and perioperative management in patients with Ehlers-Danlos syndrome(s) (from a medical journal, full text available for free)

Management of autonomic dysfunction/POTS during surgery (bring to Dr if needed?)

How NSAIDS as a long term medication can make things worse

A primer on EDS for the massage therapist

Pain Management

EDNF brochure on pain management

Management of pain and fatigue in EDS hypermobility type/JHS this is written in medical speak, but it has really good information. They break pain down into many different types, give short and long term treatment advice, prevention strategies, and treatments to avoid. Super useful

Drugs and other treatment options for pain in EDS

Breaking the Cycle of Chronic Pain/Poor Sleep/Depression/Fatigue another very useful comprehensive look at a lot of the problems with with EDS face. Lots of good information and treatment ideas. You can watch the full presentation here or read through the slides here

Summary of cognitive pain management and how a pain psychologist might be able to help.

Why testosterone replacement is recommended in male and female chronic pain patients

Better scale for chronic pain (impact of chronic pain scale) The link will have you select answers to questions and will then generate a number

Depression increases perception of pain

Medication and pain relief

Non pharma strategies for pain management

the pain toolbox

Daily living and occupational therapy

Great slide show on pain management from an occupational therapy perspective. It has a lot of ideas for improving your function around the house, adaptive tools, and ways to be more productive and effective in general.

Advice to patients on daily activities. Everything from standing, beds, driving, and gardening

EDS do’s and don’ts

Advice on splints and braces

Great general guide from a physical therapist. Touches a lot of different things from shoes, to TMJD, to PT, posture, and dysautonomia. Very solution focused! I highly recommend reading this if you have just been diagnosed

Working with arthritis

Kids and teens

An educators guide to meeting the needs to an EDS child

Managing pain in children with EDS (video)

articles explaining hypermobility suitable for ages 5-11

teens and dysautonomia

Injury help

Seriously don’t ice your injuries! And this is coming from the doctor who originally coined the term RICE. Also what to do after a sprain instead

What is tendonosis and how is it different than tendonitis?

How do you treat tendonosis

What is Prolotherapy?

What is Stem Cell Therapy?

What is Platelet Rich Plasma Therapy?

Exercise and Physical Therapy

Do’s and Don’ts: exercising with JHS/EDS

Exercise is medicine - especially for EDS (video)

Physical therapy in the hypermobile adult (written for medical professionals)

Physiopedia entry for EDS

Yoga tips for hypermobile students

how pilates can be helpful for someone with EDS,and ways to modify poses to make them more EDS friendly.

Supplements & diet

Here is my massive collection of supplements that may help Ehlers Danlos or an associated condition.

All about magnesium and Ehlers Danlos. A very important mineral, and a very common deficiency

A proposed approach to treating EDS with nutritional supplements

Low FODMAP diet and EDS

low histamine chef (if a low histamine diet is recommended)

Secondary conditions

Dysautonomia/POTS

What is dysautonomia?

POTS overview

POTS: What helps (really great comprehensive list of treatments!)

POTS - What to avoid

common myths

Is your low blood pressure being ignored (aka why low blood pressure can be a problem, and associated symptoms)

POTS, Hypotension, Fatigue and Upset Bowel

Dysautonomia and EDS, symptoms, diagnosis, treatments

Pseudo Psychiatric Symptoms in EDS: This is a must read, even if you don’t have psychiatric symptoms as it is a great explanation of the autonomic dysfunction (dysautonomia) that tends to occur with EDS, how that can effect the body, and some basic treatment ideas. Great and thorough explanation of the symptoms of different types of autonomic dysfunction.  

Useful links on dysautonomia and related conditions

Mast Cell

Mast cell pamphlet

What are mast cells and why should we care about them

Symptoms of mast cell activation disorder (MCAD)

Presentation from the 2014 EDNF conference on mast cells and EDS (option to view as recording or slides)

Spine and brain

What is craniocervical instability? Definitely start with this article. It clearly explains the types of spine and brain problems commonly seen in EDS and is a great resource. I shared this with friends and family to help explain what was going on.

Craniocervical Instability (Dr Henderson the 2012 EDNF Confrence) Video

Craniocervical Instability in Ehlers-Danlos Syndrome (by The Chiari Institute) (video)

Chiari malformation and EDS

Yes, EDS and connective tissue disorders are associated with chiari malformation (study)

Chiari surgery with EDS or instability (please read if you are considering surgery for chiari malformation)

About tethered cord

About basilar invagination

About syringomyelia

Headaches

Causes of headaches in EDS (although there are others reasons people with EDS can have headaches besides these listed)

Ehlers Danlos Syndrome and headaches (presentation slides)

EDS and TMJD and CCI (presentation slides)

TMJD checklist

Self massage for TMJD

GI

The role of connective tissue in the GI tract and common GI problems in EDS

Bowel in EDS and JHS

About gastroparesis

12 ways to help a nauseous or unhappy EDS stomach

Fatigue

The importance of orthostatic intolerance (POTS) in chronic fatigue patients (study)

Fatigue and hypermobility

EDS and fatigue (presentation slides from Dr Tinkle)

Causes of fatigue in EDS

Breaking the Cycle of Chronic Pain/Poor Sleep/Depression/Fatigue (video) Also included in the pain section. This is a very helpful look at the issues EDSers face, and how to treat them

Management of pain and fatigue in EDS hypermobility type/JHS this is written in medical speak, but it has really good information. Very specific treatment recommendations

Non-restorative sleep in EDS (presentation slides)

Neurological and mental health

Connective tissue disorders and autism

Neurological manifestations of Ehlers-Danlos syndrome(s): A review This summarizes the wide range of neurological disorders related to EDS from seizures, headaches, neuropathy, structural anomalies, and more  (from a medical journal, full text available for free)

Hypermobility associated with abnormal brain structures and vulnerability to neuropsychiatric symptoms (study)

Poor proprioception and EDS (people with EDS have a poor ability to sense where their body is in space)

Pseudo Psychiatric Symptoms in EDS: This is a must read, even if you don’t have psychiatric symptoms as it is a great explanation of the autonomic dysfunction (dysautonomia) that tends to occur with EDS, how that can effect the body, and some basic treatment ideas. Great and thorough explanation of the symptoms of different types of autonomic dysfunction.  

EDS and anxiety - good review of the research and potential causes. People with EDS are up to 16 times more likely to suffer from anxiety than the general population

Clustering of generalized joint hypermobility with attention deficit/hyperactivity disorder, atypical swallowing and narrative difficulties (study)

Psychopathological manifestations of joint hypermobility (study) “Interestingly, in addition to the confirmation of a tight link between anxiety and gJHM, preliminary connections with depression, attention deficit (and hyperactivity) disorder, autism spectrum disorders, and obsessive-compulsive personality disorder were also found”

Other

Skin and EDS - overview of many potential features and management

Bladder and pelvic floor problems and EDS

hormones and hypermobility

MTHFR and EDS (an anecdotal story, but an intriguing one)

Common foot and ankle problems in EDS(presentation slides)

Miscellaneous

Why the zebra?

Advice for care givers

the difficultly of explaining EDS to others, and some suggested questions friends and family may ask someone with EDS

Still have questions? EDNF has an extensive FAQ

Forums and support

EDS clinics (UK)

EDS hotline (UK)

EDS helpline email (USA)

Find a support group (UK)

Find a support group (USA)

Find a support group and online forum just for Canadians

Find a support group for dysautonomia(international)

List of other national organizations for EDS

Dysautonomia international forum

Inspire ehlers danlos forum

Resources

EDNF is the National foundation for EDS in the United States. They have some good info on their about pages, but the real gold lies in the presentations from past conferences (many of which are linked to here). If you go to events, then annual conference, then select a year you will find them.

Ehlers-Danlos Support UK - UK national foundation for EDS. They have really wonderful resources, and many are linked to here

Hypermobility.org is the website of HMSA, a British national foundation for EDS and other hypermobility syndromes. They have excellent info about systemic manifestations of EDS/hypermobility.

Chronic pain partners hosts a webinar featuring and EDS expert twice a month where you can listen to the speaker present on a topic of their expertise, and ask questions in real time.This is one of the best ways to get cutting edge information and to hear from specialists who you would not be able to see otherwise. They maintain an archive of past talks in video, audio, and slide forms. Their original articles focus on modifying daily living, coping with EDS; and inspiration.

Dysautonomia information network has a TON of information about dysautonomia, as well as forums, community, awareness, and help finding doctors

Dysautonomia international - is another excellent resource, providing goo info, hosting an annual conference, connecting patients to studies, raising awareness, and more

This was made my Nina! I live in the US, have EDS and really enjoy researching and organizing things. I blog about managing EDS and related conditions at spoonsandstripes, about coping with chronic illness at howilearnedtocope, and about life and positivity at expeditionhappiness

Last updated 8/31/15

[caroline-margaret]

Three weeks ago I had a craniocervical fusion 0-C2. I had craniocervical instability and a retroflexed odontoid. I have EDS hypermobility type and hopefully *had* POTS due to the compression of my brain stem. I haven't found many others who are in the same boat as me. I would absolutely love to offer advice, learn, and befriend people on similar situations. I just know that this is really hard to go through alone.

[deardiariesarestupid]

Looking back on your childhood like, “That was a symptom”… “That was a symptom”… “Oh, remember that time? Yeah, a symptom.”

[creativeronica]

*uses cold hands as ice packs*

[chronic-confessions]

Confession #516

I get green with envy when I see how well my college friends are doing. They are doing all the things I want to do that my health doesn’t allow. Some are Ph.D. students, some moved to the city, some settled down and moved into a nice house… I’m even envious of the ones who are just working full-time.

[caroline-margaret]

my blood tests: you're in perfect health and nothing is wrong

me: *looks at body*

me: you lying little shit.

[fight-until-the-wars-done]

Anyone have experience with Reglan? Side effects associated?

[caroline-margaret]

I absolutely loved Reglan! Made me hungry and able to eat along with my intestines actually moving. Sadly it only worked for me for about 6 months.

[fogblogger]

painkillers are the worst because like you just DONT poop and because you’re on painkillers your stomach doesn’t hurt as much so you don’t realize 

[ok2befat]

IZ- fashion for wheelchair users

“We believe wheelchair users should have access to the same styles and trends everyone else has, without ever having to compromise comfort.

Our clothing has signature cuts and styles to fit a seated body shape, falling and draping naturally without interfering with wheelchair mechanics. We use top-quality fabrics that look beautiful and feel luxurious.

Our Easy Zip Back option in coats is just one way that we’re making layering up and staying warm easier than ever. Discreet zippers in the back mean that Easy Zip Back coats separate into two individual pieces. 

Our signature ‘L-Shape’ means that IZ coats have the length you need over your lap while looking sleek and clean so you don’t sacrifice your style.”

The IZ Collection goes up to a 2X and has a wide range of masculine and feminine clothes.   

They look gorgeous, but be prepared. They are expensive.

[themanicpixiedreamgrrrl]

This is so rad

[scyphozoic]

netflix and ch(ronically)ill

[confessions-of-a-crohnie]

Normal person: * pain

OMG WHAT IS THIS NOW? AM I SICK? AM I DYING? I FEEL WEAK!?

MAYBE I HAVE EATEN SOMETHING BAD? 

Person with a chronic illness: *pain

Meh. 

[junkblog888]

I finally made a new video I actually really like! At one point or another every spoonie has heard at least one of these things haha. I hope you watch and enjoy! Let me know in the comments what you think or if you have any others to add! 

Happy Holidays! 

[spooniestrong]

Oh my gosh I love this 💕

[chronicallypainful]

You know you’re chronically ill when

while getting your blood drawn, your main thought is not “I hope it’s nothing serious.”

But instead “I hope it’s something treatable.”

(Corollary:  If those tests show nothing abnormal, you think “darn,” rather than “phew.”)

[sapphire-eyes]

So fucking accurate it hurts.

[whatshouldwecallchronicillness]

When my doctor is explaining the surgery I’m going to have next month...

[fyeahmovieclub]