Blue Sclera

[JenBoo333]

Hello everybody. I recently joined the Health Unlocked community to try and get answers about severe pain I’ve been having behind my right eye and in my right temple. It is stabbing, pressure like and nipping. I have a much older half sister who had a ruptured brain aneurysm in her mid to late 30’s. I have been extremely worried that this is a brain aneurysm. I have had an MRA scan that has come back clear but my worries have not subsided at all.

When I went to my neurology appointment, he pointed out that I was hyper mobile. After doing research about this, I found that I meet a reasonable amount of the criteria for Hypermobility Spectrum Disorder but not hEDS. The thing is, I don’t really have joint pain. I’ll describe my symptoms below. They are all long-standing. I am a 21 year old female.

1. Blue sclera which I will show in a photograph. Can this be a sign of anything else? This in particular has worried me a lot.

2. Dizziness in standing.

3. Generalised hypermobilty.

4. Exercise intolerance.

5. Severe leg pain that eases when my legs are up against the wall, I can feel the blood pool in my legs and it aches a lot.

6. Weak enamel on my teeth.

7. Pain in one knee joint.

8. Severe fatigue.

9. Severe pain after dental injections, they do not numb me properly.

10. Poor nutrients absorption.

11. Extremely cracking and crunching jaw.

My mother has also had stomach hernias, severe knee pain and what she thinks is early arthritis, (she is in her late 40’s). The half sister who had the brain bleed is on my fathers side. My father has aortic valve regurgitation and his son, (my half brother) has the same valve problem. He is in his 50’s. I have four other full siblings and they all meet the hypermobility criteria. They all have blue sclera and other symptoms that I have mentioned. However, like I have previously said, none of his really have chronic joint pain like the criteria says for HSD and hEDS. I’m so worried.

I am terrified because I’m my Neurology appointment the doctor said there was a link between hypermobility and brain aneurysms. I was already terrified that this pain behind my eye was something serious like that or that it’s in my family or something so this scared the shit out of me. I also have a cousin who died really suddenly and early in her early 30’s. I’m now worried she died of a brain aneurysm. I’m so confused. I have had this pain for nearly seven months and it just came on one night. It is always behind the same eye. The only other health problem I am known to have is low iron/ferritin. My level is 6 and it hasn’t been above 13 in the past five years or so. However, I do not have anaemia. I just want my life back but I’m terrified all the time. I’ve tried everything to get rid of this pain but now the hypermobilty too, I feel like it’s just been missed.

A side note: the blue sclera is a lot more prominent in real life.

[Myflexiblefriend]

Hi Jen - im sorry to hear about your challenging and scary situation. My daughter who was recently diagnosed with HSD and suspected POTS (we're waiting for the tilt table test to confirm but it seems very likely given her symptoms) has many of the symptoms on your list including the blue sclera (but not the eye pain). My limited experience is that these are conditions that manifest in many different ways in different people because the condition is systemic. When we eventually found a doctor with the experience to diagnose HSD and a PT willing to research and pay close attention we found better ways to manage some symptoms. I definitely suggest you look into POTS if you haven't already. Salt tablets and increased hydration make a huge difference for my daughter in dealing with the dizziness on standing up. Keep us in the loop and beat wishes.

[gillianTS]

Have you had your eyes checked by a ophthalmologist it's important that you get this checked out too.

[Saassii]

Just because you don't have chronic joint pain at 21 doesn't mean a thing. At 21 I didn't either and I sure as heck didn't even know what EDS was. Yet I'm definitely hypermobile with skin findings clinically diagnosed as classical EDS. The best thing would be to get genetic testing. That's quite definitive. You definitely describe many other symptoms. Have you done the Beighton Score test yourself? Do it online! If you score 5> then ditch your rheumatologist and find a more helpful person.

Don't stress about bleeds and aneurysms, that won't help. I pray and then place my trust in God. That definitely helps. Definitely don't take the pill, that makes the risks much greater for aneurysm, clots etc.

Xx

[Jamhol]

Have you gotten this checked out? I’m experiencing all those symptoms plus more.

[skingLFH]

So so late to this post, but would love to know how things turned out for you. As I was reading this paused for a minute bc it was if I wrote it myself and I was like how does she know me!!?

[Bookbabe007]

hi! Ok so it sounds like you might have migraines you can have migraine with or without aura (one sided face pain common in the temple, near the eye. Dizziness can be from migraine. If you do have migraines sometimes it can lead to bruxism( grinding of your teeth, TMJ - cracking of your jaw) or the bruxism can worsen migraines and facial pain. Although your symptoms sound like they are consistent with Ehlers-Danlos syndrome. EHS can cause problems with your perfusion/vascular function such as the pooling of blood when you work out. Aneurysm, stroke, bowel perforations, eye problems, hyper flexible joints and joint dislocations, retinal hemorrhage, hernias, bruises/cuts/injuries to the skin that take forever to heal and bruises that look worse than they should…. Fatigue, muscle weakness and pain…. All cardinal symptoms of EHS. Dyslexia is also linked to EHDs. Children and young adults may not shown enough symptoms so people tend to get diagnosed in their 30’s and later. Also celiacs disease can be common in EHDs. My recommendation would be to see a rheumatologist. Unfortunately with the shift in medicine all about volume and not about valued time, listening to the patient, and quick treatments instead of getting to the root cause. Many autoimmune diseases run together so if you are having lots of these symptoms don’t give up. I’m saying this as a migraine sufferer with hashimotos, raynauds, idiopathic urticaria, bruxism, and wouldn’t be surprised if I have EHDs. There are a lot of medical journals that have very informative articles on Hyperflexibility of the joints and how it is accompanied with many of the other symptoms you just listed. The main thing is to keep your stress levels down, as we all know stress is the number one killer. … fyi I went into the medical field to help others and to find out why I felt the way I did when doctors would look at me saying “you look healthy” when really there was a war going on in my body. My health has dramatically improved with a great health care provider who listens to what I say, I eat all organic/non processed foods, limit sugar, use non toxic cleaning supplies, and make sure to make self care a priority. I hope you find your answers but above all I hope you live a happy and healthy life.

[Yogibear11]

You may possibly have vEDS or another type. Best to see a genetesist