My Symptoms

    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

    60 Comments

    1. gtahsuda

      Hi,I am a senior in high school and have been dealing with chronic pain my whole life. I have bounced from diagnosis to diagnosis, and just recently my new OT suggested I get looked at for connective tissue disorders, particularly EDS. I have been unable to pursue this further, as my depression and its resulting hospitalizations have eaten up much of my family's funds (insurance companies are ignorant). However, I'm still trying to prove my illness, and reading your list of symptoms, I can relate to almost all of them. I would have never thought my adhesive and latex allergies could be potential symptoms! Anyway, I just wanted to thank you for putting this information out here and providing a valuable resource. It's incredibly difficult to find information on this condition as it is, and even harder to find others who have coexisting physical and mental differences. Thank you.

      Like

    2. DD

      I was born with EDS it runs in my family, my dads side. I have live all my life since I remember with pain. I am 47 years old, my parents spent a lot of time asking different doctors about my pain. Sometimes my pain is so high that I can not walk. As a child my parents were scare of this events. I have every single Symtom describe in this site. Sometimes I cry because living all this years with so much pain, abdominal problems of all kinds, migraines, neck, back, legs, arms pains. I have modify my diet, I exercise even if it hurts just because I need to be slim, body weight make it worst. This site is one of the most simple and complete guide of comprehend our condition and how to deal with it. I go to a psychologist frequently it helps with the ansiety and the frustration that people can't understand your pain. I have a wonderful rheumatologist but I haven't found an specialist in EDS.

      Like

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