It's not only the anniversary of this blog, but also the anniversary of my Hypermobile Ehlers-Danlos Syndrome diagnosis. For my final EDS Awareness post this month I wanted to provide resources for anyone who may have just received an hEDS diagnosis or trying to get one.
I felt I needed to share a video with others that was so beneficial for me in "Coping with My New Norm" this past year. A few months ago I was having a tough time dealing with all my new diagnoses and symptoms and I felt fortunate to find this of Natasha Silverman speaking about her own journey. It encouraged me to stop focusing on what I could no longer do anymore or had to let go, but how many ways I've actually adapted to make the best of my life & circumstances.
Would love for everyone to take the time to watch or listen below:
If you are trying to get a Hypermobile Ehlers-Danlos Syndrome (hEDS) diagnosis, here's the diagnostic criteria so you know what the doctor looks for: https://www.ehlers-danlos.com/heds-diagnostic-checklist/ & do this test ->
Be aware that even if you aren't hypermobile or flexible, you can still have one of the other 12 types of EDS. A lot of unexplained pain, skin, teeth, eye, digestive or blood vessel issues are clues and are diagnosed with just a simple genetic blood test. Here's the list of those types & more symptoms besides what I mentioned.
<- This shows what doctors are able to diagnose or have expertise on EDS. A geneticist is considered the "EDS specialist," but those unfortunately are few & far between (mine just retired). I suggest finding an online support group to see if there's a name of a doctor in your area or state that others have had luck with. Mine have been a cardiac electrophysiologist & internist with EDS herself.
Last, I wanted to include the most informative posts I've written so far about EDS:
*Medical Disclaimer: The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. My hope is that it'll provide you direction on finding the right doctor to receive diagnosis & treatment.
For 2020 May Awareness Month I had a little epiphany that what couldn't be more important for awareness than finally sharing my EDS story. I haven't actually shared my story yet on the blog, only pieces and mainly just my journey since I got diagnosed. That's definitely not my whole story and I thought may have been doing a little injustice because many family and friends must've assumed I all of a sudden got sick or started only having problems after my last pregnancy. The truth is I've been having issues and searching for answers for over 20 years. Some people may think, 'but I always remember her healthy and always smiling?' Outside looking in I can understand this, especially since I was a competitive swimmer and huge athlete. I mean there was a reason I went into physical education and coaching, it was my passion.
"But my story is only now beginning Don't try to write my ending Nobody gets to sing my song"
I wrote in last year's EDS Awareness post about the fatigue/exhaustion I had when I was younger and being so clumsy, but there were a lot of other signs that I had since I was a baby and at 12 is when I started really having terrible symptoms. I even sought out doctors then, but no one really helped or knew what to do/or what was wrong. Honestly I thought my joint and muscle pain everyone had or blamed a lot on sports. Plus, my motto was always push through the pain; I mean to a fault. I know some of my friends and teammates could tell you how hardcore I could be. If you couldn't hang during a workout, get out of my way. I would workout a lot on top of the hours and hours of swimming a week. Running, cardio, strength exercises, yoga, you name it. I had some pretty big goals that I wanted to accomplish, even as an adolescent.
I'm a master of disguise and I would put on a brave face (and some makeup) so no one knew, except I think my mom, that after a race during swim meets I would feel like I was dying. I'd have to curl up in the bathroom because my stomach and pelvis would hurt so badly and just cry. I don't know how I did it, but I would try to get myself together to go do it again, sometimes 30 min, or sometimes only 5 min later for another race. I know it was the same exact pain I currently have from the vascular compressions and identical to what I had during labor with my first child. Long bus or car rides to competitions were also miserable because I'd get so car sick and so there was no way I could do homework on the trips. I've since learned and understand it has to do with my vestibulopathy diagnosis because it's only gotten worse over the years and happens when I fly now too.
"This is the sound of surviving This is my farewell to fear This is my whole heart deciding I'm still here, I'm still here And I'm not done fighting This is the sound of surviving"
Some of my teammates may remember my rashes and asthma I'd get from chlorine and the pools, even waking up with asthma attacks. After a meet, I'd actually not be able to eat for hours because I'd feel so sick to my stomach and it would make me feel worse taking any bites of anything so I'd just have to lay down. I tried cutting out so many foods and "eating healthy," but a lot of the time those foods would actually make me worse. Because I was so active, I was pretty thin growing up and would eat EVERYTHING. People would be in shock just how much I could consume and I remember all the comments like "that girl sure can eat!" Of course it was always like a joke because I would do that and not be like crazy overweight, but the food would just go right through me and not be absorbed. I was starving all the time.
My senior year of college I should've known it didn't really make sense to be doing breaststroke at practice and cause a separated rib, also known as costochondral separation. I will never forget my last swim meet at our championship when I was in so much pain from it I almost scratched the last race of my career, which I had never done in all of my 15 years of competing. Whenever I doubt my ability to tolerate pain (or a doctor believing it), I remind myself I still swam that race, not only swimming my all time best, making a national "B" cut, and setting a few records. The 20 hour bus ride home from Iowa afterwards was so excruciating though. I remember when my exercise physiologist professor found out about my injury, he told me he'd heard that it compared to the pain of a heart attack, and I agreed completely. It took months to heal with no activity of any kind where I had difficulty just driving and turning my head.
"These pieces The ones that left me bleeding Intended for my pain Became the gift You gave me I gathered those pieces into a mountain My freedom is in view I'm stronger than I knew"
After my EDS diagnosis is when I realized how many things were not normal growing up. Some of the proof of me having this illness was spraining or breaking toes from doing flip turns, or that my arms and legs would go completely numb during practice. I think back to how horrible going to class in high school was because I would have such bad migraines daily. Oh, and the tendinitis or shin splints were just unbearable. I told C the other day I should've thought hmm... when I could always do the splits even without NEVER EVER practicing them. There was also too many incidents to count when I'd have this certain pain in my joints that I didn't understand. I finally had the "aha!" moment that it happens when I'm subluxing and dislocating, but had completely no clue. Who would? Eventually it would feel better so no big deal right? Well it'd feel better because it went back into place.
I'll eventually share a complete list of all the unique symptoms of hEDS in a future post, but will briefly mention having very bad eyesight at an early age, large amounts of teeth being pulled along with braces from teeth overcrowding, extra sensitive skin, strange scarring, and being overstimulated with lights or noises were all other indications. I am thankful to have gotten my diagnosis while the girls are young so that I can watch out for a lot of these and be extra understanding when they are constantly falling down or tripping, or complaining when a body part hurts. Oh ya, and not being able to fall asleep or always having nightmares as a child and adult. I used to have a lot of guilt because our first born had the absolute worst time sleeping, like almost non-existent, and we tried EVERYTHING. Then we had our second child who was like other normal babies. I felt so bad that I didn't give myself a little grace the first time around instead of wondering what was wrong with me as a mom. I still actually had trouble sleeping until recently when my EDS doctor changed my life by getting me to take melatonin.
"And this hill is not the one I die on I'm going to lift my eyes and I'm going to keep on climbing"
The explained symptoms of my POTS diagnosis is probably still the most hard for me to believe. It even gave explanation to why I felt so beyond awful during both pregnancies with severe morning sickness the whole time. All my life I could not stand long periods, and any chance I would get, I'd have to sit. I feel so dumbfounded looking back and not having the inkling something was really wrong. My legs would hurt so bad. I'd get dizzy, lightheaded, and nauseous so if there wasn't a chair, I'd just sit on the ground, no matter where or how dirty, like airports or gyms. Worshiping at church was excruciating and something I sadly dreaded, but wasn't ever about to sit in fear of being judged. As a PE teacher and coach you can imagine how difficult this might be. I mean there's not a much more active job requiring standing that you can do. I didn't want people to look at me like I was lazy so I would try so hard to push through the pain and would come up with things on my own to make it possible - calf & heel raises, walking back & forth, stretching, or leaning on something. It was so enlightening when I saw my PT after my my diagnoses and learned these were ways she would teach her patients to do to keep from passing out.
It also blew my mind finding out that exercise is not the same for us with POTS. At swim practice my first year of college, my coach would have us monitor our heart rate during sets. My coach would think I was lying about mine because it would be so incredibly high, every, time. I learned it's so easy for us to overdo it if we are going by how we feel when we workout. It was validating to hear my exercise physiologist tell me that when I do too much, the only thing I can do is rest and be more aware next time. I was excited to try my new fitness plan thanks to him, but my vascular compressions have prevented this for now. Unfortunately they cause flares when I try exercising, which is also a symptom.
"This is the sound of surviving This is my farewell to fear This is my whole heart deciding I'm still here, I'm still here And I'm not done fighting This is the sound of surviving"
To this day I'm still trying to retrain myself not to put a smile on my face when I'm hurting or push myself. Evidence of how bad I would always do this is when my husband would have to be the one to say "you are not feeling good, we need to go home." Like when I fractured my foot in NYC just from walking and I'm limping with tears running down my face and C finally tells me we are not doing anymore exploring. I've had to now also give myself a new motto of "strain always = pain." I know most people won't be able to understand that on some days just getting out of bed does this to me and I can't feel guilty about that, I can only listen to my body and give it what it needs because I ignored it for so many years. Did you know that toughing out pain can actually damage your autonomic nervous system? I obviously didn't, but want to share this tidbit of valuable information any chance I get.
I used to think if I had an early diagnosis, it would've changed so much, and my life would've been better off. Not to mention the guilt I had for awhile that I possibly gave it to the girls, even though all my doctors thought pregnancy would cure my issues instead of making them worse. With EDS we know that wear and tear is what causes our biggest health problems. I met a new friend recently who was diagnosed at 12 and still has all my same issues now at 18. I hated hearing that for her, but it did give me some peace. Of course all the repetitive and high impact sports were not a positive thing for me and something I'm glad to be aware for our girls if they have EDS, but I also know being active all my life did help strengthen my body to prevent a lot of other symptoms others deal with like keeping joints stable or in alignment. If one of the girls end up having it, I know we will eventually have to come to an agreement on what is worth doing to give you joy vs. what damage may happen if you participate in it.
"I'm still here Say it to the ache, lying there awake Say it to your tears I'm still here Say it to the pain, say it to the rain Say it to your fear"
I'll admit this past year even after my diagnosis of EDS, I was so afraid the genetic code for the hypermobile type would be discovered and I'd end up not having it. This is what years of not being taken seriously by the medical community will do to you. It makes us doubt ourselves and believe maybe we are crazy. Yes, I've had the popular comment "I think you are just depressed and why you are having pain" excuse along with "I wish all my patients were as flexible as you." The more research I do or see the specialists that actually know about it and the comorbidites, the more I realize I'm like the poster child of hEDS and couldn't possibly be anymore proof of a person with this syndrome. I'm a 9/9 on the Beighton Score Test and over 90% of what my geneticist has seen in women with my symptoms and criteria, in addition to my family history showing that I probably had it on both sides.
I'm so thankful for my rheumatologist finally connecting my issues and thinking connective tissues. I want everyone to know she wasn't even an EDS expert or had come across someone with it before, but just because it is rare, that didn't exclude her from thinking I could have it. I'll be forever indebted to her and love telling her every time I see her. Or my cardiologist who helped diagnose what was causing my digestive issues and pelvic/abdomen pain that I had given up on because a colonoscopy/endoscopy didn't show anything and a hysterectomy didn't fix it. Or my internist that finally believed the debilitating pain I was in and gave me medicine that has gotten me this far in my journey. Or the EDS specialist who is fighting for me and making things happen to get me surgery and pain relief. Or the vascular surgeon who agreed to do whatever it takes to figure out what's wrong so we can do something about it. I can never repay these beautiful souls for what they have done and continue to do, despite years of the opposite before that.
"This is the sound of surviving This is my farewell to fear This is my whole heart deciding I'm still here, I'm still here And I'm not done fighting No, I'm not done fighting And I am still rising, rising I'm still rising And I'm not done fighting This is the sound of surviving"
If you've had a similar story, I plead with you don't give up. Yes, don't hesitate firing those doctors that won't listen or won't help you (I've learned the hard way), it's a waste of time and honestly some of them don't want to learn or actually see you get better. I see you though. I see you making those appointments over and over again because you want pain relief and answers. There is a kind and understanding community that doesn't want you to experience what we have gone through, so please reach out or join these online groups for advice, ideas, and knowledgeable doctor names. You are not alone. #myEDSchallenge #myHSDchallenge
I had a huge response to my vascular compressions posts so I thought would make a similar post for EDS and POTS. I know not everyone is into the articles or research studies so if you are more a visual person, still a little curious about what I have, or have just joined me in my journey, here you go 🙂
This video is one of the best at explaining EDS and what I experience:
A very thorough video describing EDS if you want to know more in depth:
Here's my very first post and my Ehlers-Danlos Awareness Month post from last year where I share a lot of pictures about EDS and how I got diagnosed if you would like to read or learn more. If you missed the Vascular Compressions post, here's Part 1 & Part 2. If you are going how many diagnoses does this girl have? I'm still trying to get a few more to explain issues, but here's the list so far.
This unfortunately is the reality for so many of us with EDS and it's been my life the last two months. Pain takes so much of my energy as well that I have nothing left to even text or write updates, but I didn't want to miss out completely on sharing for EDS Awareness Month. I've just witnessed how it can make a difference in someone's life for me to speak up and hope to write about that soon along with giving everyone some updates. I apologize to all my friends & family who've reached out without a response yet, I promise I haven't forgotten you and it means the world when I'm experiencing the above. #myEDSchallenge#myHSDchallenge
I felt I needed to share a video with others that was so beneficial for me in "Coping with My New Norm" this past year. A few months ago I was having a tough time dealing with all my new diagnoses and symptoms and I felt fortunate to find this of Natasha Silverman speaking about her own journey. It encouraged me to stop focusing on what I could no longer do anymore or had to let go, but how many ways I've actually adapted to make the best of my life & circumstances.
<- This shows what doctors are able to diagnose or have expertise on EDS. A geneticist is considered the "EDS specialist," but those unfortunately are few & far between (mine just retired). I suggest finding an online support group to see if there's a name of a doctor in your area or state that others have had luck with. Mine have been a cardiac electrophysiologist & internist with EDS herself.
