Rare medical conditions – EDS?

[Del]

I am 25 years old, male, and seem to display a lot of signs of EDS: some joints (fingers, shoulders, hips) are very flexible (although they do not get dislocated), the skin is very flexible (especially facial skin), I can change the volume of my tongue by an insane amount (“hypermobile tongue”), local anesthetics are not effective when applied to my facial area. There are other parts of my body that are extremely flexible. I am also very skinny (heights: 180 cm, wight: 55 kg), have low bone density, my hair is thin (fine), and I have very smooth skin.

I seem to suffer from chronic fatigue syndrome (along with excessive daytime sleepiness), have a VERY low tolerance for high temperatures (more than 25 degrees Celsius), have slight photophobia (much higher sensitivity for sunlight, than artificial light), have frequent sinus and migraine headaches, occasional periods with impaired memory, occasional periods of night sweats. MRI scan of my brain indicates my blood vessels are thinner than normal, globally.

All of the above signs could be prescribed to EDS, I think. But, here are some general and current rare symptoms that I have had or am having, that I suspect are related to EDS. It would be great if someone can provide more info on this.

(i) As I child I had a very rare form of a benign tumor called ganglioneuroma in abdomen.
(ii) As I child I also had a very rare conditions called Meckel’s diverticulum.
(iii) I suffer from a rare condition called retrograde ejaculation. Current hypothesis is that this might have been caused by the operation of the tumor, but this has not been proven.
(iv) I have chronic sinusitis, with constant post nasal-drip. Antibiotics are not effective.
(v) Recently, I have been having constant headaches and sinus pain with post nasal-drip (5 weeks non-stop). During this time, I have developed yet another very rare symptom called median rhomboid glossitis (a rare form of tongue inflammation).

My current hypothesis is that probably all the symptoms are related to EDS. I have decided to take systemic antifungal medication to treat sinusitis and glossitis.

In addition, I have an extreme form of fear of heights (acrophobia) since I was born, with no apparent trauma. I wonder if this could be somehow related to EDS. I doubt it is, but I will leave it here, as there might be interesting opinions. Also, I have a slight hypokalemia.

It would be great if anyone has a feedback to share. ^^

[SunshineLollipops]

Hey There,
I started a new eating plan that I think may help your sinus problems, which may be due to an overgrowth of yeast. The website is http://www.healingnaturallybybee.com . I am not affiliated with the website but yeast overgrowth can have so many of the same symptoms as a lot of us have and could also worsen them. Hope you get to feeling better soon.

[Barbara]

I’m sorry but I don’t have experience or knowledge of any of the particular complaints you have been diagnosed with, not even the sinus problems but I know many on here have. Your thin blood vessel walls I have come across in passing, is your skin translucent ? Have you been checked for EDS ?

You certainly have hypermobility from the sound of it and that, plus the blood vessel thing is a collagen issue. Do you get much meat, fish, poultry, eggs, nuts in your diet, essentially every day and what’s your intake of fresh fruit and veg like ? Both of these are very important to help make good collagen.

Also try to get 2-3grams of iodised salt every day, otherwise it may be irrelevant what you eat, as it won’t be being digested and absorbed properly.

[Author]

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