Let’s talk about EDS

May is Ehlers Danlos Syndrome awareness month, I have not been as active as I would have liked due to a dislocation this month. Nevertheless I reached out to all of you on instagram and asked you to send me the questions you have about EDS. Because I got an overload of questions, I am going to put the top 20 questions into 5 sections and then you can scroll to specific sections.

I want to start by just giving the definition of EDS:

Ehlers-Danlos Syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

ehlers-danlos.com

For more of the basics on EDS please click here and it will take you to my EDS information page.

Here are the different topics I will be covering in this post: HEDS most frequently asked questions, joints + braces, EDS & co., Day in the life, and EDS + Relationships.

Quick PSA: PLEASE NOTE

  1. I am NOT a doctor
  2. Everyone with EDS presents differently with each and every case- it’s okay if we do different things and have different experiences
  3. I am always learning about better ways to explain things but try my best to be as factual as possible

HEDS Most Frequently Asked Questions

+ How do you handle people’s questions about what happened to you?

“What on earth happened to you?!” This is a question I get in various different forms whenever I seem to leave my house, and there are always people who don’t come up and ask but give me the look. I know you know the look so back to the question. Normally the person has assumed my injury or how long it will take for me to recover (which I don’t understand as I could never imagine saying something like that to someone else), but I will normally say something along the lines of, “I have a genetic condition called EDS and it causes defective collagen production. Basically my joints are held together by chewing gum and cause lots of chronic dislocations.” Sometimes will give longer answers or just go along with whatever they said because I am too tired to explain. Also know that you have no obligation to share what’s going on with others, share what you are comfortable sharing and move on.

+ Can you have EDS and not be super flexible or “double jointed”?

Yes. There are 13 different subtypes and each present with different symptoms my joints are hyper mobile, but I cannot perform crazy body contortions or anything like that. Some people can, some can’t- there is more to EDS than hyper mobility alone.

+ Is the wheelchair permanent?

This was a question I decided to include when I asked my husband about what he gets asked about most frequently and this was it. Many people with EDS (and other chronic illnesses) are part time wheelchair users for different reasons in different seasons of life. Right now the wheelchair is going to be “permanent” for the foreseeable future but anything can happen!

+ Is EDS progressive?

I have doctors who say it is and others who say it isn’t. EDS is so complex and it comorbidities can vary which is what makes this question so hard to answer and I would encourage you to talk with your doctor and research your subtype, comorbidities, and personal case.

Joints + Braces

+ How often do joints dislocate/sublux and what do you do? Is it painful? What joint is the worst? Can your joints dislocate while sleeping? Do your joints hurt all the time?

I looped these few questions together because it is easier to answer together. I have many subluxations a week that vary, but thankfully since working with the Muldowney Clinic for over a year, proper bracing (and learning how to best utilize my braces), and continual body awareness/mindfulness I have less than one full dislocation a month- knock on wood it stays that way!

Yes it is painful. Full dislocations for me typically require pain medication and lots of ice. Subluxes hurt but typically are not bad enough to require any special treatment. If something is subluxing constantly (as in more than 10x in a day back to back) and I fear that it will fully dislocate I will brace or tape it for 24 hours.

For me the worst is my hips, but because I have a really great brace it doesn’t go out regularly so if I went by which joint is the most unstable it would easily be my shoulders.

Yes! I cannot tell you how many times this has happened! Some tips we have learned are to make sure any sheets or blankets I use are untucked from the bed so I don’t have any resistance. I also sleep with my body pillow which helps me stay still so I don’t have the opportunity to move around as much.

Yes sadly my joints hurt all the time. I would say half of my daily meds are for my joints. Things like heat, ice, lidocaine patches, joint corrections, and rest help but ultimately the pain is always there.

+ Why so many braces? Why don’t you have to wear them all the time, and how do you decide when you need them vs when you don’t? How do you move with them?

I have so many braces it’s insane everything from standard to custom braces. There are certain braces I use way more often than others, but each brace does something different.

At this exact moment in my life I do not wear one singular brace a full 24 hours a day. I have to wear my knee brace and hip brace out of the house, but I am SO blessed to be allowed to take a break at home (as long as the joint is not bothering me and I am being super mindful of my actions.) Over the past 9 years, we have learned from lots of mistakes and created boundaries for myself and with my joints. Sometimes mistakes are still made mainly when I am not being mindful, but ultimately evaluating each day as it comes is the most effective way for me to determine what I need and don’t need.

When I am wearing a brace, I am wearing it so that I can move and be at my best. I have an AMAZING brace specialist who works so hard to make the braces as comfortable as possible. They are bulky, but they give me freedom and I am endlessly grateful for that.

+ How do you sleep with all the braces?

It’s not always easy. The only brace I typically wear to bed is my neck brace, and when my neck brace is on my neck feels so much relief that I have a harder time sleeping when it’s not on. As far as my other braces, if I am wearing one to bed it is typically because I am recovering from a full dislocation. In that case I am normally on medication that helps me fall asleep, and even if I am not taking any extra medication the brace typically relieves some of the pain. I don’t brace for the hell of it, my braces can allow the muscles to stop spasming after a dislocation and allow that area to rest.

EDS & co.

+ Why does everyone’s EDS story look so different?

This is a question many people have when they know or are following multiple people with EDS. Everyone who has EDS presents differently on it’s own and comorbidities make it even more differential. I remember talking with Kathleen Muldowney and she told me that they see people who live a fairly normal life and others who have lost their ability to live a normal life. EDS just has its own set of rules I swear.

+ What are comorbidities? 

Comorbidities is defined as: the simultaneous presence of two chronic diseases or conditions in a patient. Many people with EDS can have Dysautonomia, Chronic Pain Syndromes, Mast Call Activation Syndrome, and more. Many HEDS patients have the trifecta of some form of Dysautonomia and MCAS. All of these comorbidities can start causing symptoms at any time and can be anywhere from mild to severe. I am currently being tested for MCAS, and currently being treated with a typical treatment program for it while we wait on the blood work. I also have Dysautonomia and RSD/CRPS.

+ Why do you have a port?

The port was placed for two reasons, to allow me to receive home care infusions and to mostly eliminate the need for peripheral IV’s for meds or blood draws. The infusions and IV meds I receive are to help control Dysautonomia symptoms, the best part is that I don’t have to be at the hospital a couple times a week (which has been the greatest blessing!!) The reason eliminating PIV’s were so important is because I could only use a 24 gauge needles (which are really small) and no one could get an IV without ultrasound. This made it impossible to get anything done without some kind of admission.

+ Why do you wear a mask?

I wear a mask to prevent from catching common colds and viruses along with keeping me free of allergens. My immunology team had me start wearing masks at about one year ago when I started have more serious allergic reactions and my good friend Jill made reusable masks and sent some to me. Thanks Jill! Now my amazing younger sister-in-love is making a bunch more for me!

Daily Life

+ What are your top 3 tools/products that have been the most helpful in regards to managing EDS?

  1. My body pillow: My husband will attest that this was probably one of the best purchases we have ever made. I use it 24/7, it goes on trips with us, and when I need to be in the hospital we bring it with us there. Life would not be the same without it. Also for all my friends who suffer from dislocations while sleeping- this pillow really helps!
  2. My Medical Cart: This cart has been instrumental in our medical organization. This medical cart holds all of my medications, tapes, and port care supplies.
  3. The “Living Life to the Fullest” by the Muldowney Clinic. I am fortunate enough to work with them weekly, but for those who don’t know them this book is great to read and give to your PT! It’s like an EDS 101 book
This is the body pillow!

+ How do you handle medical trauma and dismissive doctors?

This one is hard. So many of us have been exposed to medical trauma and dismissive doctors as those with EDS are neglected in so many ways regarding treatments and quality care. My best advice is work with a great therapist often.

+ What are your thoughts on being called a warrior? 

I am very mixed about this word and have been for a long time. I overall know that people mean it in an encouraging capacity- even I have encouraged others with that phrase. The problem I have with being called a warrior is that it implies that you are fighting a battle you can win. You can’t always win with a chronic illness. It’s not as black and white as the word warrior makes it out to be. If that word encourages you- use it often. If that word doesn’t encourage you then don’t use it. I use it sometimes but not often. In my opinion it is okay to have times where you feel like a warrior and it is okay to have times where you don’t feel like one. I personally love the word overcomer and use that in place of warrior 90% of the time.

+ Do you have any life hacks or lessons you have learned? 

Yes! My top three would be:

  1. For those with ports, instead of buying expensive shirts with zippers, adapt the clothes you already have. My mother-in-love had the idea to ask a friend who is a seamstress to add zippers into my clothes- and it was cheap and fantastic. I am always able to reach my line when I need to, and honestly it is so helpful.
  2. Frosting works as fast acting glucose if you are allergic to citric acid (make sure the frosting doesn’t have citric acid in it though!!)
  3. Bring card games to the hospital to help pass time, our all time favorite is 5 crowns!

+ How do you deal with restrictions?

In the past I am quick to admit that I did not deal with them well. I hated them and worked against them for a long time, and it never paid off. As I have gotten older, I work hard to try and remember that by following my restrictions and knowing my limits is actually an advantage. When I do what my body can and don’t push it, I am giving myself a chance at a better day.

EDS + Relationships

+ How has EDS affected your family?

Honestly, in every way. We have to keep the EDS in mind all the time. Thankfully as a family we battle this, and I am so grateful to have a supportive family. It has changed our relationships significantly though some areas for the better and some areas for the worst.

+ How does EDS impact your marriage?

Balancing the husband-wife relationship with the caregiver-patient relationship is messy to say the least. We did a lot of premarital counseling specifically to work on figuring out how we would best balance the two. In a lot of ways I would say that we do a great job, but we will always have room to grow. The fact of the matter is having a chronic illness impacts every part of your life, and once you accept that it is a little easier to move forward.

+ How do you handle the guilt and weight of having a chronic illness?

I handle it by acknowledging it. I don’t avoid it. I work hard to grieve when I need to and my therapist is a HUGE help. There is no timeline of grief, a few nights ago I broke down and allowed myself to validate my own feelings. I go by the ten minute rule which I will link here, in case you are interested, as it has been a life changing rule in my personal life.

And last but not least…

+ What is the one thing I want people to know about EDS more than anything?

If I had to put one thing at the very top of this list it would be: I need you to fight alongside me for a cure- not try to give me one.

_____ will not cure me.

Positivity, while great, is not a cure. Tumeric, while great, is not a cure. Collagen Injections, have nothing to do with EDS. Exercise, while great can be detrimental to someone with EDS and regardless is not a cure. *insert whatever Dr. Oz was talking about* is not a cure. Not talking about EDS and ignoring it will not cure me. Surgery will not cure me. The miracle supplement that your aunt is selling will not cure me. Need I go on?

Here’s the thing about EDS- it is genetic. It will be apart of me until I die or until a cure is found. That is why I need you. I need you to share about EDS. I need you to promote awareness and the desperate need for research. With you in my corner, we can fight this.

To donate to the Ehlers Danlos Society click here!

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