As some of you know, I have a disease or disorder called hypermobility that causes severe joint stiffness and joint pain. Every now and then, no matter how much exercise I get, or how much sleep I get, or how healthy I eat – a flare up will happen and it renders me useless. But I don’t remember a flare up this bad in years. It seems that the more time that passes on, the worse this disease gets and I’m able to do less and less.
Rather than wallow in self pity, I thought I would take a moment to share what a flare up is like to help spread awareness around EDS and hypermobility. I also thought I would share a few things that I do for selfcare when the pain gets to be too much. It seems like no amount of medication a person takes makes the pain go away. You pretty much just have to wait it out. Like a storm.
What is Ehlers Danlos Syndrome?
I’m still learning all the things that comes with Ehlers Danlos Syndrome. What I have is called hypermobility – and I’ve always known that. What I didn’t know growing up was that there is a connection between EDS and hypermobile joints. What I’ve learned in recent months is that everything I have had issues with, all my life, can be explained by an EDS diagnosis.
To help you understand a bit more easily, EDS are described as a “group of rare inherited conditions that affect connective tissue growth and function.” Connective tissue supports function in skin, joints, tendons, ligaments, blood vessels, organs and bones. Therefore, EDS can affect your entire body and attack organs as time goes on.
About a month ago, out of curiosity, I took the EDS criteria test and I scored fairly high. The more I learn about EDS, the more I realize that I am a likely candidate for it. I’m currently on disability leave from my job and likely will have to go on permanent disability at some point. I’m waiting for a referral to a rheumatologist for an actual diagnosis. But while I am at home, I am using the time to learn as much as I can.
There are many types of EDS and hypermobile EDS is one of the most common types. But some of the types can overlap – which makes diagnosis difficult. I know for sure, that I have the hypermobile version of EDS because my joints have always been super loose and dislocate easily. To the point that when I was 8 years old, I had surgery on my right knee to stabilize it. I developed arthritis at age 34 after a bad knee injury that wouldn’t heal. And now I have arthritis in my fingers from being a musician for 40 years. My fingers lock up and seize up while playing the piano. My toes also pop out of place, cramp up and lock. And now my shoulder pops out on a regular basis.
But there is so much more, as I’m learning that comes with EDS and it’s been a real eye opener. I truly believe that I’ve been misdiagnosed all my life. And therefore, the actual problem has been neglected and has grown worse with age.
What are Ehlers Danlos Syndrome Symptoms
- An increased range in joint movement or joints easily dislocating or “popping out of place” (hypermobility)
- Stretchy or fragile skin that bruises easily or takes a long time to heal. EDS skin can also be prone to skin infections, acne and other lovely conditions that may arise during a flareup.
- Joint pain, stiffness, clicking and popping of joints. My left shoulder makes this grinding noise and my knees and ankles pop every time I stand up.
- Extreme fatigue is easily the worst part of EDS.
- Stomach issues that resemble IBS that can result in heartburn, constipation or diarrhea
- Dizzy spells and increased heart rate when standing up – it can also affect your blood pressure as I’ve learned.
- Issues with organ prolapse – check yes for this. My uterus collapsed about ten years ago. My gallbladder also failed me when I was 20.
- Bladder problems – stress and incontinences. Signs of infection when no infections are present.
- In some cases, blood vessels can be affected and this can cause things like varicose veins, fragile blood vessels that can bulge or tear (this is why I get so many migraines), and blood clots in rare cases. Check that too – I have a rare blood clotting condition.
- Hypermobile fingers and toes – check and check. Small earlobes, check that – I get ear infections all the time. Delayed wound healing – I type this as I have a bruise that has been on my leg for nearly a year.
- Curvature or the spine (scoliosis) – very mild but yes – since birth.
- Weak muscles – check.
- Fragile eyes that worsen with age – check.
I also recently learned that EDS can cause severe anxiety. As symptoms worsen, they can spike up cortisol levels. Cortisol is a hormone which can cause stress or anxiety. The more cortisol you have in your body, the more prone you are to experiencing things like panic attacks or anxiety. This explains so much for me right here.
What are treatments of Ehlers Danlos Syndrome?
Without seeing a specialist, most physicians will just try to treat the most troubling symptoms with medications and pain treatment. For a while, that worked for me. But now I’m to the point where this has seriously taken over my life. No matter how much exercise I get, or how well I eat, or how much weight I finally lose – these symptoms are always there.
There is no cure for EDS and the disease is degenerative. It will get worse with age, wear and tear. The more dislocations you experience, the more a person becomes prone to things like osteoarthritis and even blood clots in some cases.
And for those with the vascular type of EDS, there is a shorter life span expectancy. Most patients will have had a major blood vessel incident by age 40.
My knees are so bad from pain that I can’t go for walks anymore. I try and walk and exercise a little bit every day. But on rainy days like today – it’s hard to even get out of bed. And so, I mostly just sleep.
I’ve tried various pain medications over the years from Celebrex, Toradol, to Cymbalta, Amitriptyline, and Mirtazapine. Some medications just made me want to sleep all day. While others worked for a while, and then stopped after a year or two.
If you struggle from hypermobility or EDS, I recommend getting a team of medical professionals who can help you with various symptoms.
- Primary Care – for prescriptions and referrals
- Hematologist – blood vessel or vascular issues
- Occupational therapist – if you plan on working
- Rheumatologist – joint issues and pain
- Genetic counseling – if you plan on having children
- Therapist – to help with the anxiety and cope with the disease
EDS is an inherited disorder. I think it was passed on from my mom’s side of the family. I’m still learning what this all means to me. The more I learn, the more it helps me to understand my medical history. I’m making a list of questions to take with me to my appointments.
Selfcare for flareups
It’s been up and down all the past week in terms of weather. I find that the joint pain and symptoms of hypermobility get worse when it is raining or the weather changes. More specifically, there is dampness in the air. When the weather becomes more stable, flareups can happen less frequently.
I thought I would share some of the ways I practice selfcare during these wicked flareups. My big struggle is the guilt I feel when I can’t do things like go visit my dad. I’ve kept putting it off this week until I finally accepted today that it’s not going to happen. I went out for a few an hour yesterday, and today, I can barely move.
The migraines haven’t even been so bad lately, it’s more the debilitating joint and muscle pain, and stomach issues that cause me to full on stop.
Here are some things I do on really bad flareup days. This is why I batch prep and cook all food. I can pull out the leftovers and heat them up in the microwave when I don’t feel like I can cook. Or like today, I might order in as even that is too much work.
- Have a warm bath with Epson salts. Light some candles and listen to music.
- Lay down on the couch with a pillow, blanket, hot cup of cocoa and binge watch your favorite comfort show.
- Watch your favorite movie that makes you cry. This can be cathartic release.
- Go for a massage or physio therapy visit to help alleviate some of the pain.
- Have a quiet day to yourself and shut off your phones and social media. Read a book. Sit outside if it’s sunny out. The warmth of the sun can feel good on the skin and bones.
- Treat yourself to your favorite meal. Have someone cook it for you, or order in from a restaurant.
- Sleep. Your body needs rest on these days and sometimes sleep is the best medicine.
These are just a few ideas. I think for me today, I’ll be lying down on my couch and binge watching some older movies. My headphones broke last night, snapped right in half. So, I’ll be using speakers today and stretching out. I am going to try and exercise a bit later.
Then I’m going to order in some food. I have no idea what yet. Maybe pizza for my cheat meal. Or something more healthy. There’s a Celtic restaurant that makes really good shepherd pie. I wish the Danish restaurant delivered because I would order that in – in a heartbeat.
Don’t feel guilty about taking the day off
I used to feel extremely guilty when I called in sick to work. Now that I know what my medical issue is, I’m actually amazed that I was even able to work at all. I think I ignored this for too long. And now that I’m at home, my body has had a chance to rest and it’s like.
“Okay Wendy, that’s enough. It’s time for you to just rest now.”
I’m trying hard to forgive myself and not feel guilty about canceling plans. I’m so glad that today was my first day away from the church and I am taking more time for myself. There’s no way I would have been able to play today. Even typing this blog post hurts.
I’m not writing this for sympathy. I’m writing this to connect with others who live and struggle with hypermobility and EDS. Or other rare diseases. I’m here to offer up friendship and support. And to let you know, that you are not alone in this.
Let’s create a safe community and support each other. Because that is the greatest selfcare you can give yourself.