ehlers danlos syndrome

Ehlers-Danlos Syndrome Part 2: My Symptoms and Comorbidities

Like I have stated before, there are 13 subtypes of EDS, 3 of them more common than the others, and the most common type being the hypermobility type. Ehlers-Danlos Syndromes do have some symptoms and comorbidities in common, but there are also some that happen only with a specific type. I learn more and more about EDS every day, but specifically hEDS because that is the type I have. Learning that many of the symptoms and conditions I have are because of hEDS is such a relief. Its actually nice knowing that there is a cause for all of this. The symptoms and comorbidities I have are:

  • Fibromyalgia- chronic widespread pain. The best way to describe it is that its like someone gave my nerves megaphones. What may be a very slight pain for a person without Fibromyalgia can cause agony for someone with Fibromyalgia. There are days when even wearing clothes causes pain.
  • Interstitial Cystitis- this is also known as “painful bladder syndrome”. It feels pretty much like I have a constant UTI and it makes me feel like I constantly have to pee. I’m not super sure what causes this. I’ve read some things that say that EDS can make our bladders more stretchy, but I’ve also read that its because the protective lining of the bladder is damaged and it can’t stretch like its supposed to. Contradicting, I know. Either way, I am always VERY aware of my bladder. Maybe I should name it. How about Peter? Get it? Pee-ter? Please, just laugh for me.
  • Syncope- I was recently diagnosed with Vasovagal Syncope, but I’m not totally convinced that’s the reasoning for my fainting/near-fainting. I really think it has to do with Postural Orthostatic Tachycardia Syndrome. POTS is a common comorbid condition with EDS, not too sure about Vasovagal Syncope. Either way…standing up too fast makes me fainty, hot weather makes me fainty, not drinking enough makes me fainty, not enough salt makes me fainty, standing for too long makes me fainty, eating too much makes me fainty. Life in general makes me fainty, haha! (BTW, “fainty” is my way of saying “feeling like I’m going to faint/pass out”.
  • Degenerative Disk Disease- my spine is aging faster than I am. I am 25 right now, but my spine looks like that of a 35 year old. It does cause me some pain and discomfort, and can get worse over time.
  • Scoliosis- curvature of the spine. Again, it causes some pain and discomfort.
  • Irritable Bowel Syndrome- gosh, do I wish that this had a nicer name! There is ZERO way of hiding what this is about. Basically, everything upsets my tummy. Fatty foods, fried foods, milk, stress, heck, even the weather can upset my tummy!
  • Gastroesophageal Reflux Disease- lots of acid reflux and heartburn!
  • Headaches and Migraines- I truly hope you know what a headache is! As for migraines, they suck. Light sensitivity, sound sensitivity, nausea, intense head pain, vision disturbances…
  • Allergies- I’m allergic to life! I have Environmental Allergies, Seasonal Allergies, Food Allergies, and medication allergies.
  • Asthma- I’m really hoping you know what asthma is too. Its not too much of a bother for me, but its there.
  • Soft, velvety skin- This isn’t so much of an issue for me, but my skin is SUPER SOFT. For years people have been asking me how I get my hands so soft. Who knew the answer would be a genetic collagen defect?
  • Stretch Marks- people with hEDS are loaded with stretch marks. I’ve had mine for a very long time, they just sort of started popping up one day. I have them on my upper arms, upper back, tummy, thighs, and chest.
  • Joint Hypermobility- my joints move in ranges they shouldn’t. Joint hypermobility is not the same as being flexible. Hypermobility causes more risk for hyperextentions, subluxations, and dislocations.
  • Muscle Spasms- my muscles work overtime to compensate for the hypermobility of my joints. This causes them to me tense, sore, and spasm.
  • Joint Subluxations and Dislocations- I have daily subluxations, specifically in my left knee. Subluxations are partial dislocations. For some people they cause pain, for others they don’t. For me, sometimes they do and sometimes they don’t. Subluxations for me tend to be quick, my joint will start to pop out, but then pops back in real quickly. Dislocations don’t happen as often, but they have happened. This is when the joint fully moves out of place. It is incredibly painful. I’m thankful that this hasn’t happened in a long time.
  • Hearing Loss- research has shown that hEDS can cause conductive hearing loss due to the fact that the mechanisms in the ear can become hypermobile as well. They are unsure at this time if hEDS can also cause sensorineural hearing loss. I do not have conductive hearing loss (that I know of), but I definitely have sensorineural hearing loss. So, maybe it has something to do with my deafness? Maybe it doesn’t now, but will in the future? I don’t know, but I do feel like its important to put it in here.
  • Gastroparesis- partial or full paralysis of the stomach. I haven’t officially been diagnosed with this, I still have to talk to my Gastroenterologist about getting the testing done. But, my Endocrinologist thinks that I have it based on my symptoms. GP means that the stomach has trouble digesting food, if it digests it at all. A flare for me means that I feel like there’s a brick in my stomach, I’m constantly feeling nauseous, I become constipated, I throw up, I have a GERD flare. Its not pretty. During flares I have to rely on liquids for nutrition because I can’t eat. I become weak and dehydrated.

There’s probably some things I’m forgetting, but this is definitely the main stuff. And, quite frankly, its enough.

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