Living with Ehlers-Danlos Syndrome, Type III – Hypermobile

Medical Problems

EDS3
EDS Type III - Hypermobile

The following table itemizes the medical problems I have experienced throughout my life. Does this table seem excessive? Try living it. Does the table look familiar? I am so sorry for you and whoever the person in your life is that lived it. The table lists only a few of my injuries, because they are too numerous to include, and most patients with EDS3 break bones and joints on a regular basis like I have. It does, however, include surgeries and procedures requiring anesthesia. To date, there are nearly three dozen that I have records for. It is not a complete list either.

Medical Problem Age (Years) Lasted Until How It Happened
Intense stinging in my feet 4 or 5 Never ended Jumping from barn roof to empty hay wagon
Broken left ankle 6 Unknown Stepped in a pothole running to car, then car wrecked on the way home. Not sure which incident broke the bone.
Severely nearsighted 6 Never ended Discovered by 1st Grade Teacher
Broken toe(s) 10 Happened often through current date I have broken each toe so many times I have lost count.
In-grown toenail removals 10 Age 20 Repeated doctor visits due to recurrent in-grown toenails finally culminated in surgery to permanently remove the problem on both feet.
Debilitating pre-menstrual cramps 13 With each cycle until a complete hysterectomy at the age of 30 I was doubled over, sobbing, in my middle school class until the Principal came and helped me to his office. As a father, he “diagnosed” me as a young girl experiencing ovulation for the first time.
Surgical removal of nine teeth 14 Permanent Some teeth were baby teeth that would not fall out on their own. The other teeth were permanent teeth removed due to overcrowding.
Menstruation-related pain (unbearable for at least three weeks of the month) 13 Age 30 I had intense lower back pain the week before each period; intense abdominal and back pain during each period; intense ache in abdomen but even worse in low back.
Three broken ribs 17 Six months later I slipped while exiting a row of chairs in the theater. I fell on the arm between two chairs.
Blood Sugar Problems 18 Roller-coaster ride This is common in my family. Both of my parents were diabetic before they died, but so far, most of my siblings are hypogly-cemic. I started out with low blood sugar in my teens, which lasted more than 20 years. I became insulin-resistant around the age of 38, at which time I began taking very expensive medication to treat it. I eventually stopped taking the medicine because we just could not afford it. Apparently, my body no longer needed that stuff, because I had no ill effects to the loss of it. When I later had a gastric by-pass surgery, my blood sugar problems were cured. At least they were cured. They seemed to come back when I gained weight again.
Chronic Depression 19 Suppressed 3 years later This was my first official diagnosis of mental illness.
Broken right elbow 19 Six months later I slipped getting out of the shower and landed on my right elbow. My employer, a lawyer, refused to accept that it was truly broken. I knew he might feel that way, so I went to my employer’s doctor, who was also the team doctor for the LSU football team.
Gained 60 pounds in three months 20 26 years later In and out of hospital for most of a month; digestive system had shut down. Continued to gain wait until the process was finally reversed with Rouen-Y Gastric By-Pass surgery. Lost 150 pounds.
So much pain in feet, could not press pedals in car 22 Never ended Podiatrist was convinced it was bunion pain. He performed Bi-Lateral Bunionectomies.
Surgical areas would not heal from bunionectomies 22 2 years later My body rejected the metal screws and other objects inserted, like pins. So, Podiatrist operated on both feet again to remove hardware.
Reflex Sympathetic Dystrophy (RSD) in both feet 22 2 years later, sort of; still being treated for nerve pain almost 30 years later The anesthesiologist was using twilight anesthesia during bunionectomies. He did not have me sufficiently sedated, and I was participating in the conversation of the podiatrist and the surgical staff. I felt him screwing the metal screw into my bones, and I screamed, “Drug me!” The anesthesiologist cranked the valve open and immediately knocked me out. But because he was worried, he brought me back around just in time to feel the screw being drilled into the bones of my other foot. The result? I was conscious when the pain was so great that it short-circuited the nervous system in both feet. Thus, RSD. I was in intensive therapy for six months. I had to learn to tolerate the touch of bed sheets on my feet to eventually tolerate socks and shoes, and finally walk.
Endometriosis Mid-20s Unknown We were hoping this was the cause of the pain surrounding my periods. I had laparoscopic surgeries twice, two to three years apart. The endometriosis was widespread both times.
Possible Miscarriages 22 5 years later My husband thought we should invest in pregnancy test companies because I bought them so often. My periods were unpredictable and heavy. At least three times per year I would believe I had lost a pregnancy. No miscarriages were ever documented by a doctor.
Infertility 25 2 years later I was married and not using protection for a number of years without having a successful pregnancy. Both my husband and I were tested for our fertility. My husband was fine. I was told I would not be able to conceive.
Irritable Bowel Syndrome 25 Never ended I remember starting with constipation before I started elementary school, but I finally saw a doctor for it 20 years later.
Insomnia 26 Lifelong This was officially diagnosed, and medicine was prescribed to treat it when I was 26; but I have had insomnia as long as I can remember. When I later became pregnant, I was so excited that I would have someone to keep me company in the middle of the night.
Generalized Anxiety Disorder 26 Never ended At this time, I was put on Valium. I do not remember much from this diagnosis at this age.
Pregnancy 27 40 weeks I successfully conceived and carried my son full term. However, I had morning sickness for the entire pregnancy. I was confined to the couch and had to prepare to vomit when brushing my teeth or pretty much any other time of the day.
Fertility diagnosed 28 2 Years Later OB-GYN declared I could have an unlimited number of children.
Adenomyosis 30 Permanent After two years of trying and failing to conceive, the same OB-GYN acknowledged that I was infertile. He performed a complete hysterectomy, removing my uterus, both ovaries and tubes, my cervix, and more endometriosis. Laboratory testing of my removed uterus confirmed that I had adenomyosis. I believe this is a major, unidentified symptom of EDS3.
Tib-Fib fracture 31 6 months I was bed-ridden recovering from the repair surgery that once again added metal screws and pins in my bones.
Hardware removal 32 Limp Continued My body again rejected the foreign material. The pins were working themselves out and were threatening to burst through my skin. Therefore, I had another surgery to remove the pins.
Fusion of right ankle 32 1 year Totally bed-ridden while the bones were growing together. In a mental stupor from painkillers.
Bi-Polar Disorder 33 Never ended This was the first time I received this diagnosis. I had heard that I had two cousins with this diagnosis, one on each side of my family, as well as an older sister. I later came to believe that my father would have been diagnosed the same way if he had ever submitted to a psychological examination. He was diagnosed with dementia several years before he passed away. I believe there is a link there, and I am hoping I am wrong. His dementia was very destructive to family relationships before it was over.
LASIK vision correction 37 Age 42 Eliminated glasses and contact lenses for a few years. Halo-effect never went away.
Facet blocks and neurotomies 41 Age 47 A dozen or so procedures aimed at pain management over a six-year period.
Fat Necroses of the Breast 41 42 Seatbelt injury in car wreck damaged right breast. Eventually, damage was removed.
Allodynia 41 Never ended I was raised in a very physical culture, and my family was more physical than most. Let me be clear: my family is and was very affectionate when it came to hugging and similar loving contact, but there was absolutely no sexual impropriety in the household in which I was raised. They would, and still do, gesture by slapping someone’s knee, putting a hand on someone’s arm, giving someone a gentle squeeze. These loving touches are, and were, incredibly painful to me. It made me a touch-me-not, which is a sad thing to be when one is raised to express affection this way.
Spondylolisthesis with Disc Injury 41 Never ended This was not fixed in its entirety because it was two widespread. I did later have a spinal fusion of one of the worst joints at the time.
Herniated/Bulging Cervical Discs 41 Never ended Every time I have an MRI, CT-scan, or X-ray of my neck, it shows continued deterioration. I have been treated with physical therapy, including massage, chiropractic adjustments, steroid injections, nerve blocks, etc. At present, I just deal with it (and the resulting extremely painful neck pain and headaches) the best I can without outside intervention. I have basically “called in sick to the doctor.” It feels too bad to let them mess with it.
Meralgia Paresthetica 42 Never ended This another problem I had for many years before it was ever diagnosed. My doctors always told me it was caused by obesity, but it did not go away when I lost 150 pounds.
Fibromyalgia 42 Never ended Again, a problem I had for probably at least a decade before it was diagnosed. This made me even more of a touch-me-not, which is a very lonely thing to be.
Oral surgery, again 44 Permanent tooth removal, but bony plate removal only lasted a few months Removed wisdom teeth due to oral overcrowding and removed bony plates from upper and lower gums. The gum surgery would not heal as expected. By the time the gums began to heal, new bony plates had started growing in again.
Gastric By-Pass Surgery 46 2 years I began gaining weight at the age of 20, so this should be listed then; but I did not successfully get rid of the weight until the age of 46. The weight came back when I was going through a divorce at 49 to 50.
Stomach Ulcers and Strictures repaired 46 The second surgery was a permanent repair I believe these two surgeries were complications of my gastric by-pass. These problems never repeated after I healed from the gastric by-pass.
Surgical removal of malfunctioning gall bladder 46 Permanent I now have trouble digesting fried foods, and most meat makes me vomit. I have become a functional vegetarian.
Surgical fusion of broken left fibula 46 Permanent Another time in which I broke my left ankle. This time it required surgery to repair it.
Degenerative Spine Disease 46 Never ended I had surgery at 47 to fuse joints L4 to L5. However, the rest of my spine, especially the lumbar and cervical spine, is still in need of repair.
Osteoarthritis 47 Never ended This pervasive problem was not officially diagnosed until I was 47, but I was treated for it in different joints years earlier. For example, I had rooster comb injections in my left knee over a period of months.
Left Knee received rooster comb injections 47 Injections were given over a period of a couple of months My left knee had worn away its cartilage, resulting in a bone-on-bone situation. Therefore, the doctor substituted the artificial cartilage to minimize bone damage and to lessen the pain of knee movement.
Spinal Fusion surgery 47 Permanent Vertebrae L4 and L5 were fused together, removing what was left of the disc between them. Now I have more pain in the vertebral joints around the ones that were fused.
EDS3 47 Never ended This was the first time I ever heard of EDS3. My rheumatologist diagnosed me, and, when he did, he recommended that I read a book on the subject. The more I read, the more upset I got. Every page revealed more and more symptoms that I never dreamed of linking as part of the same illness. I was partly to blame for my late diagnosis. I never told a single doctor everything I was experiencing at one time. But how do you know what you don’t know? Read that question again. That is exactly what I felt. When I was just a quarter of the way through the book, I threw it on the floor. It felt as though the more I learned, the more I recognized in my life. I wanted ignorance, as if I pretended it did not exist, it would go away.
Attempted Suicide 48 48 I tried to split my veins from wrist to elbow so that I could bleed out before anyone found me. My husband came home unexpectedly and found me in the tub bleeding. He called an ambulance. Once my physical wounds were treated, they sent me to a behavioral hospital for one week for psychotherapy.
Atrophy Predominating Frontal Lobe 50 Never ended This diagnosis came as quite a shock. I had fallen in the shower, hitting the back of my head on the tile above the tub. The Emergency Room doctors ordered a CT-Scan of my head and neck. They did not find any damage from my fall; rather they found that most of the frontal lobe of my brain was dead space. I am waiting to see a neurologist to get some of my questions answered. Is this related to EDS3? Did it cause the EDS3? Did the EDS3 cause the atrophy? Is it a result of all the opioid painkillers I took for years? This finding deserves an article all its own.

Please click here to share your similarities with me. Please tell me of other symptoms you have that you believe are connected to EDS3, as well.

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