The Spoon Theory written by Christine Miserandino

The Spoon Theory written by Christine Miserandino

Need to Get it Off My Chest..... Literally

For the past few months I have been having problems with my rib popping out of place beside my spine. This has become a very painful problem, that is affecting my quality of sleep almost every night. Laying down is killer! I am still waiting on a referral to a pain specialist from my GP. It seems like every year the problems from EDS just multiply, get worse and even more bizarre. Coping with Ehlers Danlos has been a process. I miss the days when I didn't have pain every day. My best days anymore still feel like I am coming down with the flu. I'm tired and I ache all over. I feel terrible that my children have to also be affected by EDS (not just with their own hypermobility), but having to cope with a mother who is not always up for fun and games. Chronic pain and fatigue is a vicious cycle, and I hope to get some better management soon. Some days I feel like I am merely surviving rather than living. So many people don't understand why you never feel up to doing anything but just sitting around your own house. I have begun to feel very socially isolated. At this point I am still working full time, but this is taking everything out of me. After work I have nothing left to give, and no energy to do anything else. People don't understand that either. My family likes to give me the "if I would just....." speeches; and If I wasn't dealing with chronic fatigue and pain I probably would......... I hate those speeches! Do people really think a person in pain enjoys being in pain?!?!? Chronic pain and fatigue is a vicious cycle that you can only understand if you deal with it. It zaps you of your vital energy and sucks you dry, just like a parasite. There are a lot of misconceptions out there about chronic pain and invisible illnesses. It's amazing how quick people are to judge a person who deals with chronic pain. I have talked to my family about my diagnosis of Ehlers Danlos, most of them refuse to educate themselves. They only continue to judge, and blame me for my pain. I am doing the best I can with what I've got, this is all I can do.       

What Does Ehlers Danlos Look Like? Here is how it affects me.

Hyperelastic Skin

Atrophic Scars

Random Bruising of Unknown Origin

 

 Hypermobile Elbows

Hypermobile Fingers

Hypermobile Toes

Gorlins Sign

I am also hypermobile in my spine, knees, wrists, ankles and hips.

All of these areas cause me a great deal of pain.

Detachment From Pain: Detachment From Self

As far back as I can remember, I have been dealing with pain. As a child, there were signs that something was not quite right. I remember having a lot of "growing pains". I remember sitting on the sidelines by choice during sports because I always ended up "jamming" my fingers or twisting my ankle. I remember complaining to my teacher that my hand hurt while writing, of course that was never taken seriously. I remember getting in trouble during PE because it hurt to participate. I remember being taken from specialist to specialist because I was "pigeon toed". The chiropractor said it was because my hips didn't sit right, and I endured a series of painful adjustments when I was 10 years old. The adjustments would only last a few weeks and my toes would slowly turn to meet again. I learned from a very early age to mask and hide my aches and pains. No one believed that this little person could actually be suffering consequences from doing the seemingly simple tasks of childhood. Of course, I was always willing entertain and make people laugh with my sideshow tricks. People thought it was amusing that I could contort my body in such bizarre ways; no one ever suspected that these seemingly benign party tricks could be a sign of something very wrong. As I got older, I began experiencing pinpoint pain in a number of joints. There was no obvious deformity, swelling, or redness surrounding the joints that hurt. I bruised easily, and would even have spontaneous ruptures of the small vessels in my eyes. Once they ruled out pathologies of the blood, this too became somehow normal. In fact its so normal, that I still have yet to meet someone who sits down to lunch and by the end of it looks like they got hit in the eye!?!?! I often wondered, where are these other "normal" people like me? My complaints of pain began to be dismissed as over dramatization and attention seeking. The pain was there somedays and absent others, with no obvious pattern to follow that would raise further questions to a medical professional. Silently I suffered, I began to believe since there is nothing wrong with me, everyone must feel pain like this. I began to doubt and ignore the messages of pain my body sent me. To cope, I had to become detached from myself. Early adulthood brought about new pains. At nineteen I went to massage school. I quickly began having problems with my hands. An observant instructor noticed I was hyperextending my fingers, even with minimal amounts of pressure. Our anatomy instructor who was a chiropractor, suggested some hand strengthening exercises. These exercises always led to more pain, so were not very effective. Six months into my career I had to quit due to the unbearable pain in my hands. It was also around this time I became pregnant with my daughter. I often complained of pain in my back and pubic bone. My OB-GYN dismissed these as "normal" pains of pregnancy. Even when I became tearful, screaming for someone to remove the invisible crowbar that was prying me apart at the joints, it was normal and I was being dramatic. After pregnancy I continued to have back pain. I was diagnosed by an Orthopedic with a spondylolisthesis in the lumbar spine. Even with so called proof of my pain, my complaints were often dismissed as some sort of histrionic attempt for attention or drug seeking. I actually had a "friend" of mine tell me I was completely annoying and she was sick of hearing about my aches and pains. I then remembered what I had learned early in life...... shut up and detach. For years I silently suffered, thinking if this is "normal" I want no part of it. I began having trouble with anxiety and depression. Over the years my joint pain has become increasingly worse and my fatigue at times is unbearable. I always feel like I am coming down with the flu. I would go to the doctor scared to talk about it, for fear of being shutdown yet again. Over the years x-rays were done of the areas that caused me the most pain. All my x-rays would reveal osteoarthritis or degenerative joint disease to some degree. I began to get the impression that it must be normal for someone in their early 20's to develop widespread arthritis. The medical professionals seemed completely unconcerned with me having polyarthritic joints, not mention the pain it was causing me. Looking back now, the lack of concern for a 20 something with polyarthritis really pisses me off! As a registered nurse, I can tell you without a shadow of a doubt... that is NOT normal! Developing poly arthritis alone at a very young age should have shot up a HUGE red flag that led to further medical investigation. It wasn't until I was 30, that I found a doctor who immediately became very concerned when I told him my health history. He was in complete disbelief that no one had ever even considered the possibility of something autoimmune. He could not believe I had suffered in pain for nearly 10 years with a diagnosis of polyarthritis, and NOT ONE medical professional investigated further! Lupus was his first suspicion. My blood work came back inconclusive for any autoimmune rheumatologic disorder. My doctor was shocked. He told me he really thought it was lupus, it explained all my signs and symptoms. As crazy as this sounds, at the time I was upset it wasn't lupus. I was sick of feeling crazy, like some sort of histrionic playing on things that aren't even real! I wanted answers as to why my body was turning on me! Part of me knew I wasn't crazy, but a larger part of me really began to wonder. My doctor gave me the diagnosis of fibromyagia. He was baffled, and assured me he would try to find the cause of all my pain. He at least validated that my pain was real, at least he was not going to stop at fibromyalgia. The diagnosis of fibromyalgia was upsetting, I know how the majority of the medical world views "fibromyalgia". Only a handful of healthcare providers even believe it exists, so I began to research. I came across an article of a study that reflected a large percentage of its participants diagnosed with fibromyalgia actually met the diagnostic criteria for something called benign hypermobility syndrome or BHS. BHS is studied and diagnosed far more over seas than here in the states. By reading about BHS I also ran into articles about Ehlers-Danlos Syndrome. I quickly realized that not only did I meet the criteria for BHS, I also met criteria for Ehlers-Danlos. After researching, I brought up the possibility to my doctor that all my pain and arthritis may in fact be coming from being hypermobile. At first he thought I was joking. Then he began bending my joints, and had me do a mini version of what I now understand as the Beighton Scale. His mini assessment concluded that the degree of hypermobility I had was NOT normal. I asked him if he thought a visit to a geneticist was warranted. He agreed it was a good idea. After researching various geneticists in the Louisville, KY area, I decided to go Cincinnati, OH to see Dr. Bradley Tinkle. He has written two books on Type III EDS, genetic connective tissue disorders are his area of specialty. I figured if anyone was going to know the answer, it would be him. Dr Tinkle's team was amazing! First a genetics counselor spent time gathering a family history. My mother while not as obviously hypermobile as me, has quite a few similarities. She too has suffered from migraines, early onset polyarthritis, easy bruising, and multiple areas of weakened connective tissue problems such as varicose veins. Both my children are hypermobile and also have traits of EDS. Like me when I was a child, they often complain of various aches and pains without any known trauma. I will be taking them in the next year to see Dr. Tinkle. Dr Tinkle spent the 1st thirty minutes or so physically assessing me. Through his assessment, he concluded that I have a Beighton score of 9/9, soft doughy skin with mild hyperelasticity, (+) Gorlins sign (the ability to touch the tip of my nose with my tongue), dental crowding, hypermobility of jaw, Pes Plantus (flat feet that collapse when standing, but appear normally arched when elevated). His physical exam along with my extensive and documented medical history of early onset polyarthritis, polyarthragia, fibromyalgia, hiatal hernia, spondylolisthesis, degenerative joint disease, anxiety/depression, palpitations, increased heart rate (at times well over 100 beats a minute), dizzy spells, episodes of hypotension, chronic fatigue, IBS like symptoms, reoccurring gastritis, varicose veins, TMJ, and oracular type migraines led to a diagnosis of Type III Ehlers Danlos. It's appalling that until seeing my current Doctor, NEVER ONCE did all the tangible evidence of something wrong set off a red flag to any former doctor or nurse practitioner! Thirty years of being told my pain was not real, or as bad as I was making it out, has not resulted well in my psyche. I have become detached from myself and distrustful of others. I was ignorantly told for years (and sometimes still am) how I should and shouldn't feel. This has caused a large degree of isolation, loneliness, bitterness, doubt and depression. Detaching from myself was the only way to survive the very real pain that for so long people assured me was not there. To make matters worse, people tend to think being in pain is your fault! If only you would (insert random stupid solution here) or wouldn't (insert random action here) you wouldn't hurt. Ehlers Danlos is a congenital defect in the collagen of my body's connective tissues. Telling someone with EDS that they should be able to just take control of their pain, is equally as stupid as telling someone with Hemophilia to just stop bleeding! When your tendons and ligaments are overstretched like an old rubberband, you're going to hurt! There is no pill, surgery, exercise, snake oil, or magic wand that will make EDS go away. What it does mean is I know the source of the problem and can work towards doing my best to preserve my body as long as possible. Preserving my body takes the form physical therapy, occupational therapy, pain medications, braces and other assistive devices. Treatment for EDS is not curative, and every year I deteriorate a little more. I don't know what will happen to my body in a decade or even next week, and that’s terrifying. Being that my children also are also showing traits of EDS, its upsetting and guilt provoking to think about what unknown course EDS will take with them. I decided to write a public blog to bring awareness to others about this very real and rare congenital disorder. Many studies have estimated 1 in 10,000 to 1 in 15,000 people suffer from Type III EDS. The number could be greater than this considering so many go undiagnosed and live out a lifetime of chronic pain. Living with untreated pain like this causes a person to detach from themselves physically. I believe this also leads to detachment of the mind and spirit. I have had to start over in the process of becoming the person I was meant to be, despite of my physical suffering. Now that my pain is beginning to be somewhat managed, I can put more energy into focusing on what’s important in life. I also have hope that my children will not have to suffer so long without an answer.