My (yes, all me!) symptoms from EDS, POTS, bipolar disorder and PTSD:

  • Chronic pain (as with most people who have EDS-HM) in the following: neck, spine, back, shoulders, elbows, wrist, hands, fingers, hips, pelvis, legs, knees, ankles, feet, etc.
  • Bursitis (currently in both hips) and tendonitis (elbows)
  • Dislocation of joints (my worst are my knees and shoulders)
  • Subluxation of joints (slipping, almost dislocating, but not completely)
  • Semi-thin skin that tears easily
  • Extremely long healing times
  • Easy bruising
  • Slight scoliosis in lower back and a ‘forward-neck’ (neck curves opposite of how it should)
  • Sensitivity to latex (hives or rash, not breathing issues)
  • Allergy to adhesives
  • Tape will rip my skin, so NO tape for blood draws, surgeries, etc.
  • Insomnia
  • Restless-Leg Syndrome (diagnosed thru sleep study)
  • Decreased sexual drive (though I went through a period craving sex as a way to connect and receive “love,” which I have since come to learn was due to sexual abuse)
  • Irritability
  • Memory Loss
  • Anxiety
  • Chronic fatigue
  • Bruxism (grinding of teeth, especially at night), TMJ Disorder
  • Joint dislocation during sleep
  • Nerve compression in hands (similar to carpal tunnel pain)
  • Knee: recurrent patellar dislocation (knee-cap dislocating) and patellofemoral joint syndrome (PFJ) (dull ache behind knee cap, pain in surrounding soft tissue)
  • Weak ankles, dislocate sometimes, pop/click always, pain after standing/walking, etc.
  • ‘Knock-kneed’ – foot and ankle aligned wrong, alignment of muscles and bones in legs try to compensate, creating imbalance and more pain, thigh bones rotate in creating more problems (ortho said if this gets any worse it will require surgery to realign the bones in my legs)
  • Clumsy
  • Slight aortic dilatation (needs to be monitored by echocardiogram yearly for possibility of aortic aneurism – so far, just ever so slight and of no worry to cardiologists)
  • Tachycardia (crazy heart palpitations)
  • Orthostatic hypotension (blood pressure lowers when changing positions, moving)
  • Dizziness
  • Passing out (black out – sometimes I am on the verge, sometimes I actually pass out)
  • Severe headaches
  • Migraines (with nausea, vomiting, blurred vision, spotty vision, pain)
  • Eyes – 27 with a cataract in right eye! (which will eventually need to be surgically removed), astigmatism in left eye, need glasses for reading, computers, night-driving, dimly lit rooms, movie theaters, etc.
  • Gum disease
  • Mild asthma, especially with allergies
  • Chronic IBS and other gastrointenstinal problems
  • Chronic UTIs, leading to some bladder infections and kidney infection
  • Scarring on skin is weird – my scars become strange and thin and spread out. Also, everything scars – even paper cuts! – but, most scars spread out and aren’t super noticeable, very odd
  • Mild musculoidal pseudo-tumors on elbows
  • Bone loss – until you are after menopause, they just refer to it as low bone density. My levels from my DEXA are all that of osteopenia (pre-osteoperosis) and one level is right on the border of full osteoperosis.
  • Mild arthritis in knees and shoulder, shown on xray (I would bet in my fingers, too!)
  • I have been told I have fibromyalgia as well (my grandmother has it) – though, so many symptoms seem to overlap. I have been treated for this sort of simultaneously.
  • Definitely have issues with the sleep -> mood -> energy cycle (I will talk about this in another post)
  • I have also been diagnosed with Chronic Fatigue Syndrome
  • Mania (extreme enthusiasm, energy, passion, easily distracted, irritable, mean)
  • Depression (no motivation, sleep too much, withdrawn, sadness, despair)
  • Suicidal thoughts and attempts
  • Nightmares
  • Night-sweats

One Comment

  1. Tynamite

    Hello I see this symptom page shows your symptoms. I have a question. I hear that EDS is a dehabilitating condition. Why is this? What is so bad about EDS?


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