I’m a big believer of science. Science doesn’t negate medicine, but I would say I first need to properly change how I treat my body for it to work optimally.
— Diana D.

Let's talk PAIN

It's that bad four letter word we've come to know so well.  No matter what type of EDS you have, this unwelcome friend has probably hijacked your body and your nervous system.  So let's talk about it.  Let's learn to take back part, most or as much of our lives as we can.  Not every therapy, drug, or method will work for everyone.  We are all unique organisms, and we need to listen to our bodies to know what works best for us.  I am still learning what works best for me and unfortunately I am not a doctor so I cannot prescribe methods or medication.  That being said we must be vigilant in our search for relief.  Please peruse these articles and please, PLEASE try one or more of these things.  Give it a chance, learn to smile, and love yourself again.  You deserve it.

There are drug therapies, which sometimes are a necessity, natural therapies and methods that will surprise you at how effective they can be if you are willing to be consistent.  I know we tend to put ourselves last, but this isn't the flu or your common cold.  We only have one body, and these bodies need all the help we can give it so be kind to yourself, tend to your body and learn what works best for it.

 

I pull many of these articles and videos from EDS Facebook groups, and general research, and am sharing them here in one location.   I am currently trying to provide new content twice a week, so please check back for current articles, and information.

 
 

Propriopception Tools

I am beyond excited to be testing out and working with Body Braid!  Proprioception is a huge issue.  Random, large bruising, and the possibility of subluxing is only amplified by our inability to perceive the location of our extremities, and body in general.  Body braid was created out of necessity to help heal and facilitate a more comprehensive healing process.  My comprehensive, I mean this tool allows your body to comprehend the location of your body, allowing you to more appropriately respond to your body, your environment and move with confidence.  I just received my Body Braid products so I do not have a full review for you yet, however there is a huge level of excitement over here after trying it on for the first time.  I have seen this product before and was intrigued by its function, and the hopes that it may help.  I'll be posting a full review later after I have had a moment to fully absorb all aspects and functions of the Body Braid, however I am happy to bring you a 5% discount if you don't want to wait, or have been eyeing this product for a while and what to take the plunge.  Use code "EDS Needs" at checkout for your discount, and click on the logo to check out what this amazing product from Blair Voyvodic MD is all about!  Why am I listing this under The Pain Game section, well less impact, subluxing, and random injuries due to poor proprioception means less pain and recovery overall!


Do you have musculoskeletal pain?

I just read a great article and review about how a TENS machine can help alleviate chronic musculoskeletal pain.  I must admit I have been curious if a fellow EDS'er had tried one of these machines after seeing one at a fair for $200.  Yes, AND she provides an amazing source for an AFFORDABLE machine that comes with a lifetime warranty.  Thank you Kendra Nielsen Myles!  Read her review here entitled CHRONIC PAIN MANAGEMENT WITH TECHCARE MINI MASSAGER TENS UNIT – A PRODUCT REVIEW, and check out the TechCare massager here for $24.99, or click on the photo!   I literally just ordered mine, thank you!  I'll post how I get along with it in the future after I've had a chance to get a feel for it.


Making progress together with ehlers danlos

New research on Orthopaedic management of the Ehlers–Danlos syndromes, Ehlers–Danlos syndrome, classical type, Oral and mandibular manifestations in the Ehlers–Danlos syndromes, Gastrointestinal involvement in the Ehlers–Danlos syndromes, Psychiatric and psychological aspects in the Ehlers–Danlos syndromes, Chronic fatigue in Ehlers–Danlos syndrome—hypermobile type, Cardiovascular autonomic dysfunction in Ehlers–Danlos syndrome—hypermobile type, A framework for the classification of joint hypermobility and related conditions, Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history, all published in the American Journal of Medical Genetics Part C: Seminars in Medical Genetics in the month of February alone.  Currently trying to get my hands on these to share here.  Click on photo to be taken to the individual abstracts of the articles listed above.


The Mighty has an amazing resource of relevant articles, this one resonated with me today.  16 easy steps to take when you're feeling overwhelmed by neuropathic pain.  Click on the photo for a direct link.


One of the most recent posts from the EDNF really resonates with me.  I've suffered my entire life but I started complaining about my pain exactly 20 years ago.  At the bottom of the post there's a link to add striping to your profile picture to help raise awareness!  Click on photo to read more.

 

Joint hypermobility: emerging disease or ILLNESS BEHAVIOUR? AN ARTICLE BY RODNEY GRAHAME

 

Having an invisible illness can be overwhelming.  Hearing, "we just don't know," and  "there's nothing we can do," can feel like an elephant sitting on your chest.  There are people out there who understand, who empathize, and seek to change the mindset of the medical community.  This article is from 2013, however still full of pertinent, validating information for those of you who may need a little inspiration to fight a little harder in the new year.

 

"Can a body pillow reduce stress?"

"The act of hugging your body pillow can improve both your mental and physical health because it calms the mind and eases physical aches and pains simultaneously."

Stress, fatigue, aches.  These are all issues that plague all EDS'ers.  Here is a great quick article on the benefits of body pillows and how they can help improve our daily lives through improved and quality sleep.  Every little bit helps.  Let's be our best together.

 

10 WAYS TO ACTIVATE YOUR VAGUS NERVE + INCREASE TONE

For those of us who have digestive issues, and for those who suffer from gastroparesis, here is a quick list of simple ways to stimulate the vagus nerve from Organic Olivia.  Did you know that a low vagal tone not only reflects digestive issues, but can attribute to fatigue, anxiety, depression and food sensitivities as well?  Read on to see what activities you can incorporate into your daily routines, and which ones you can adapt!

 

Ehlers–Danlos Syndrome—Hypermobility Type: A Much Neglected Multisystemic Disorder

A wonderful comprehensive outline of EDS type 3 and how it effects the body as a system.  If you have been recently diagnosed, have a loved one who has been recently diagnosed, or a professional patient looking for validation that you have been unable to get from medical care providers, please read.

 

With fall coming family gathering and the obligatory family gathering schedule can seem ominous and unbearable for the chronically ill.  Take a moment to check out this article on fun things to do this season.  Remember these activities can be conformed to your physical abilities.

 

Successful communication

You're familiar with this chart aren't you.  Did you know that when you are asked to "rate your pain,"  your doctor may be referring to a scale you may be unfamiliar with.  This makes effectively communicating with your caregiver and being treated properly slightly impossibly if you are not on the same page.  Take a moment to read the following short article to make future visits more productive.  Working together is key.

 

 

 

Using Mindfulness to approach chronic pain

I know it can seem far fetched to some, however it is proven that techniques such as practicing mindfulness distrupt pain neurotags in your brain, and help combat the ill effects of chronic pain.   This article introduces a few techniques you can practice daily to help you take back your life.

 

CHRONIC PAIN

The American Chronic Pain Association has some great resources for helping you navigate communication with your provider, pharmacist, treatment options and every day tools.  They alsohave listings by state for the US and Canada for support groups for chronic pan sufferers.         

 
 

The Unbroken Smile, where chronic pain conditions unite worldwide.  They have a section for chronic pain tips and nutritional suggestions that may be beneficial.

THORACIC KYPHOSIS

How to fix Thoracic Kyphosis, or rounded back.  Do you have that neck "hump?"  Slouch unconsciously?  Have the ability to dislocate, maybe you don't dislocate that often and just kind melt into an awful posture that wreaks havoc on your spine and before you know it you cant move you're in so much pain?  This is an 8 minute video that guides you on exercises to help strengthen your muscles.  Don't forget to take it easy though,

 
photo courtesy of terimiyahira.com

photo courtesy of terimiyahira.com

5 Easy All-Natural stress reduction Techniques

You may not realize how much stress effects your mood, well-being and pain.  They are unfortunately directly correlated.  Take a moment to catch up on these 5 easy steps.  They may be the first small step in regaining your health, sanity or they may just save you from constantly lashing at out loved ones.  Either way these don't cost you anything!

 
photo courtesy of terimiyahira.com

photo courtesy of terimiyahira.com

 

5 natural ways to reduce anxiety

Again, often misunderstood is the relation between anxiety, stress and pain.  Here are another 5 FREE tips from my favorite Ph.D. to help you slow down, and hopefully help you enjoy life a little more.