[Disclaimer: This is not a substitution for medical advice. I cannot diagnose or treat. This post is just sharing things that I believe should make you ask a doctor about so you can seek the right specialist to rule out an EDS diagnosis. After my diagnosis I didn't realize some of the below were things I should've mentioned. If you don't have the flexibility or hypermobile things, but a lot of the others, I would strongly consider doing the simple blood test for the other 12 types.]
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| Wait this isn't a normal and comfortable thing to do at 36 weeks? |
- Muscle & joint fatigue young - I would blame on athletics
- Muscle & joint pain young - Usually blamed as "growing pains"
- Subluxing or dislocating fingers and joints - What causes me to do this is having to push buttons (like a toilet or seatbelt). I knew my fingers always hurt, but just didn't realize what was happening and currently in the process of getting splints for my fingers.
- Hyperextended elbows - Handstands were difficult or cheerleading and ballet poses without looking funny
- Hyperextended knees - My cardiologist even got a protractor to measure and was a little shocked at the degree
- Scoliosis or lordosis - We believe this is the cause of my multiple vascular compressions
- High arches or flat feet - Always picky on shoes or wanted to be barefoot
- Bad eyes - Specifically astigmatism / near sighted. I was close to being legally blind, but had LASIK at 22
- Blue sclera in the eyes - Bluish coloration of the whites of the eyes that my dermatologist found
- Swimmer's ear & earaches - I actually learned our anatomy is different that can cause these and TMJ
- Specifically shaped ear - So I didn't know this was a thing, but my sister-in-law learned about noticing ears for EDS diagnosis in a class for her Nurse Practitioner degree (was interesting because my husband always joked about my "elf ears" - it was in a sweet way that he loved my ears like Arwen)
- Hearing loss - I've always had issues hearing or understanding someone with background noise
- Small palate and teeth crowding - I had 15 teeth pulled out when I was young (some baby and some adult to make room for all my teeth) and still also had braces for 2 years
- TMJ or overbite - I actually didn't know I had TMJ because my mouth didn't pop when I ate (it can actually cause migraines and there's something you can do to help if you see the right specialist)
- Teeth problems - Can range from sensitive teeth, gum disease, more likely to have cavities no matter how well brushing or flossing
- Extra flexible - Like zipping your own tops or dresses, never had to practice splits, PE flexibility test was always easy
- Shin splints & tendinitis - I should've caught on to this because I had it constantly and would even get from doing flip turns at swim practice
- Subluxations - Which I didn't even know I was having until a few months after diagnosis when my wrist hurt really bad again and I started moving it around and realized joints would always stop hurting soon after when I put them back in place and then I realized all the other joints it happens to
- Dislocations - I did it with a rib and didn't know you could, you need to be aware it's definitely possible
- Fractures - Another common and discussed symptom, but when it happens like just walking, THAT'S NOT NORMAL
- Sprains & breaks - I would sprain and break toes like crazy when I was young doing gymnastics, cheerleading, flip turns in swimming (broke my pinky finger playing volleyball)
- Constantly rolling ankles
- Randomly falling down or losing balance - I learned I just had to start laughing at myself because what can you do?
- Severe bruising - Didn't ever know where they came from
- Fatigue - Not just being tired, but more like can't get out of bed or move
- Digestion issues - Usually misdiagnosed as IBS, but we can have gastroparesis, or vascular compressions and I think everyone with EDS needs to learn about "fight and flight" because we are more prone especially with digestion that can cause the issues (Listen to Heidi Collins)
- Lots of rashes or reactions - For me it really started with chlorine as a swimmer
- Velvety skin - When the tech for my neurologist was doing some testing and was like wow your skin is so soft
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| This was just from a blanket |
More unknown & unusual
- Look younger - When doctors talk to me especially when they didn't want to give me pain medicine they kept forgetting I am actually in my 30's and have children
- Skin imprints (above) - Tight clothing, waistbands, socks and honestly just sitting or laying on something will do it for me
- Piezogenic papules on the heel - You have press your heel down on the floor for them to pop up
- Skin issues like ichthyosis vulgaris (extremely dry scaly skin) & eczema - A dermatologist was actually the first specialist to confirm my EDS
- Eye floaters - I mentioned eye issues, but didn't know it wasn't normal to experience this all the time (very important to get eyes checked often if you have EDS because if you wait too late, irreversible damage can be done)
- Cannot hold a pen correctly - I've actually found these special pens to write that are way easier (#paidlink)
- Sit in weird positions - I could never sit correctly at the dining table or computer chair
- Irritation from sticky stuff or bandages (last pic below) - PICC line was awful because of this
- Trouble falling asleep or staying asleep (autonomic system dysregulation) - I've recently started melatonin thanks to my EDS doctor and it's life changing for me and my oldest
- Vivid dreamer and nightmares
- Overstimulated and oversensitive to light, noise, or touch
- Shiver A LOT and it hurts - Another one I didn't know that wasn't normal
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| My youngest getting lip/tongue tie procedure |
Women, Childbirth, and Motherhood
- Pelvic pain and difficult periods
- Imperforate hymen - Seems to be hereditary also
- Tilted Uterus
- Difficult getting pregnant
- Pregnancy & hormones - With the hormone relaxin it makes our joints even more lax and more likely to have 👇
- Pubic Symphysis Dysfunction (now called Pelvic Girdle Pain) - I wish I had known and made more of a request to get imaging because I was told it was just normal to feel that way, but I was in a lot of pain
- Quick deliveries - For my oldest's birth my water broke the morning I turned 37 weeks (since she wasn't a preemie didn't think anything about it) and even though she was born OP, was a very short delivery (was also dilated and effaced very early on when they checked at 34 weeks)
- Bleeding & hemorrhaging - My youngest's birth
- Lip/tongue tie - Both daughters had, but awareness is also lacking for this (what should've been looked for and diagnosed right after they were born when they had difficulty nursing, but my oldest had it clipped at 3 weeks finally, then after having issues again found out it can grow back if not lasered with exercises and had to have it lasered at 6 months)
- Overproduction with nursing & painful production - I had to wear nursing pads the whole 15 months I breastfed my first and could only nurse her laying down (I also had no idea other moms didn't have pain or realize until I was in an EDS Mom Facebook Group)
- Prolapse - I thankfully haven't experienced yet, but actually a positive that I had a hysterectomy (know it can be not just uterine, but bladder or rectal prolapse as well and a doctor should have you stand to check)
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| It never fails, this was only from an hour |
Ones to be aware of
- Difficulty healing - For me it started with chicken pox scars that were prominent and even though my c section scar healed normal, my much smaller hysterectomy incisions did not (keloid)
- Problems metabolizing medicine - I'm usually a rapid metabolizer, if I metabolize something at all (why testing is so important for us)
- Anesthesia & epidurals won't work effectively or sometimes at all (same with local anesthesia like getting something done on at the dentist) - Make sure to mention to any doctor before procedures
- Sensitive skin - Makeup, soap, lotion, detergent
- Pain - Like I didn't know it wasn't normal to wake up in pain and that's my first thought when my eyes open
- We hyperextend and go way past normal range of motion - Something I've learned what the correct range of motion should be thanks to Jeannie Di Bon and my PT. I found out from my EDS doctor we can have hypermobile urethras, what the what what?!
- Elastic Heart - Just kidding not a symptom, just the name of Sia's song (who has EDS), but we do have elastic bladders.
If you are curious about other diagnoses I have that are caused by EDS and those particular symptoms, read this post. Any symptoms or something you've experienced I left out? Any that you wonder are connected? Please share!
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