When Things Cannot be Solved Only Managed

Lots has happened since my Dexa scan in June that I wrote about here.

One thing I noticed on the scan was my hands. Even though I had walked over 2 kms to the health center for the scan, on a warm June morning for my 11:00am appointment, (which certainly should have got my blood flowing nicely), my hands showed completely purple on the scan, which is an indicator of lack of blood flow. Even though it is somewhat normal for blood flow to be less in hands and feet, in my scan my hands showed a marked difference than that of my feet.

I felt this “proved” (at least in my mind) the pain I had been feeling in my hands since wintertime, which had not gotten any better now that it was summertime. I called my doctor and started a series of appointments and tests.

On August 14, 2025, at 54 years old, I was finally diagnosed for the first time with hypermobile Ehlers-Danlos Syndrome (hEDS).  Additionally, I drew the “Could come with a heart valve problem” card: I have grade 2 (out of 4) mitral valve regurgitation.

Story:

I have had 10 years of complaints to doctors, including dizziness, (had my ears and hearing checked to no avail), Achilles tendon issues, painful crepitus in my knees, an inguinal hernia seemingly out of nowhere, slow gastric emptying and digestion problems, excessive allergy reactions that felt like over-reactions or immune reactions, just to name a few of my various complaints, which ultimately led nowhere when discussed with various doctors.

Not to blame the doctors, different ones tried to help at different intervals, but my issues were all over the map, with some rising to an acute level, (which would then prompt me to go to the doctor each time).

If there is difficulty connecting the issues, think “connective tissues…”

My most significant symptom was by January of 2020.  I would feel shortness of breath if I suddenly had to jog across a crosswalk, despite walking daily and otherwise being reasonably physically fit. And I would feel winded when carrying something heavy, like a bag of dog food from the store to my vehicle. I felt like I could not take as deep a breath as I used to. The doctor never listened to my heart, he just ordered a lung function test, the results of which were that my lungs were fine, and that was the end of it. 10 years of complaining…only to be told over and over how great I look, and nothing could be wrong…that I probably just had anxiety…

Spoiler alert, it was not just anxiety.

To finally get some answers, it took severe attacks of Raynaud’s phenomenon in my hands, (since 2024 continuing to present, resulting in painful neuropathy, which has also now started in my feet), which led to finally having an echocardiogram ordered, the results from which I found out I have heart valve disease.

When I saw my mitral valve on the ultrasound…both sides looked like tattered drapes…it’s an image that is kinda burned in my mind. 3 days later I was told what the “tatters” indicated: “A torn chordae tendineae of the mitral valve results in mitral regurgitation (MR) when the damaged fibrous cords can no longer properly support the valve leaflets, causing blood to leak backward into the left atrium during the heart’s contraction.”

But why did I develop heart valve disease?

Diagnosis:

Ehlers-Danlos syndrome, hypermobility type (hEDS), which is a connective tissue disorder. This has led to progressive heart valve disease, specifically grade 2 mitral valve regurgitation complicated by the fact that both sides of my mitral valve are involved in the leak (bi-leaflet).

“Ehlers-Danlos syndrome can cause dysautonomia, specifically autonomic nervous system dysfunction affecting blood pressure, blood flow, and body regulation, including dizziness, lightheadedness, temperature and sweating dysregulation, and issues with the gastrointestinal (digestive) system, such as delayed gastric emptying, bloating, cramping, or constipation.”

These are all symptoms I have, but the doctors told me it was anxiety, wanted to give me anxiety meds, but I said no thanks. Other than taking daily Gravol for dizziness, and more recently Tylenol 1’s with codeine for the pain in my hands, I do not take any prescriptions at all. I am being referred to an ophthalmologist to establish a base line for my eyes. Ehlers-Danlos can negatively affect the eyes, more so than regular aging. I am also waiting to see a cardiologist.

Currently, my rate of heart valve disease progression is unknown, as this is my first diagnosis via echocardiogram, and I do not have any previous echo for comparison.

“Your measurements fit with Grade 2 / moderate mitral regurgitation by standard echo criteria.

You have:

• Bi-leaflet prolapse

• Eccentric jet

• Vena Contrata (VC) and PISA at upper-moderate range

(Based on an echocardiogram, having a Vena Contracta (VC) and PISA at the “upper-moderate” range means you have significant, or severe, valvular regurgitation = leakage). 

• No left atrial enlargement yet

• Mild left ventricular dilation but preserved function”

I plan on living a long time with this heart valve disease. Best guess I was stage 1 about 5 years ago when I first noticed symptoms (and sadly still felt somewhat gaslighted by the doctor, even though he sent me for the lung function test, ug). That means I could have 10 years before stage 4. Unfortunately, when both leaflets prolapse like mine have, it’s called bi-leaflet mitral valve prolapse.

“This pattern is less common than isolated posterior leaflet prolapse.

—Significance: Severity risk – Bi-leaflet prolapse can sometimes be associated with a higher likelihood of progressing MR over time, because both sides of the valve are involved in the leak.

—Surgical repair: In cases that become severe and need surgery, repair is still possible in experienced hands but can be a bit more complex than isolated leaflet repair.”

Frankly, I cannot see me ever having open heart surgery to try and repair the valve, even if it gets to stage 4. Because of the Ehlers-Danlos, I think (I have not yet talked with a cardiologist) that it would be like sewing cardboard to tissue paper. Instead, I am just going to continue to live my best life each day, love on my husband and our home and our pets, and work to keep my heart muscle as strong as possible, so it can handle the pressure of the back flow of blood (thanks to my shredded heart valve) for as long as possible before causing other problems. Despite how bad it sounds, I am otherwise in excellent health (which is why it was a huge surprise for my doctor, after the echocardiogram). This is proof you need to be your own advocate. If you think something is wrong, even when you “look” fine, do what you need to do to keep following up.

hEDS is a spectrum, so not all cases will look alike. Of the 13 (or is it 14) types of Ehlers-Danlos the hypermobility type is only one without a genetic test to confirm. In fact, because I am 54-years old and post-menopausal, I cannot demonstrate the hypermobility I have had historically. Right up until the last minute, during my July 2025 rheumatologist appointment, he was almost going to send me on my way with another “It’s all in your head” attitude, then he finally listened to my heart. Not everyone with hEDS will have mitral valve prolapse, let alone progress to full-on mitral valve regurgitation, but when he heard what he called a “significant murmur,” that was when he finally looked at me as though there really could be something wrong.

Unfortunately, it took drawing the heart valve card of hEDS to get noticed.

I am glad to finally be believed: “Oh, maybe your hands do hurt more than average.”  But I will admit, I am a bit saddened to find out I have heart valve disease that cannot be solved, or cured, only managed, for the rest of my life.

So, I move forward with the determination to double down on my health journey. I have upcoming appointments with an ophthalmologist, a cardiologist (when I get through the wait-list), then a bone scan done at a hospital (because “a Dexa scan is not medically diagnostic” according to my doctor, lol).  And I am glad I do not have to play catch up on my health, having made changes for the better more than 2 years ago.  Instead, I can just keep doing what I am doing, and work to improve my body composition with less body fat, more muscle. I will manage this diagnosis just fine.  I am only just starting to learn about hEDS, and mitral valve regurgitation, but building lean muscle and overall strength will truly serve me.  Sitting back and not moving daily will decondition me faster than average.  I will continue to prioritize daily walks and healthy eating.