When you are researching joint disorders, you often find the words "hypermobility", or "stiffness" or "swelling". You often find, Lupus, Rheumatoid Arthritis, and Carpal Tunnel disease. I was in the United States Navy when my spine started reacting in a way that no one was sure was actually happening- nevermind the number of times it was happening. I was sent to a chiropractor, a rheumatologist, and a general internist and all of them were stumped as to why my back kept reacting the way it did. They were even more confused as to why I would have sudden attacks of stiffness and pain when I was sleeping, or just waking up for a 0400 watch, (4:00 A.M for us civilians). All I ever did know was that while my doctors knew I was in pain, the rest of the crew thought I was nuts.
Since I already had a history of Ehlers-Danlos, and it was determined to be 'benign'- not going to kill me- no one really thought anything of the dislocating lumbar joints. I was sent for body scans to determine if I had any degenerative arthritis, or even bone spurs. Body scans are long, drawn out medical procedures involving the injection of a radioactive isotope and a lot of staying still in a very cold room. This was pre-MRI, and very similar. A machine spins slowly around you taking pictures of the fluid going through the muscles and veins. It's pretty cool to see, but I have no idea if they're even used anymore with the advances in this field.
The attacks progressively got worse the more in shape I became. I would run, lift weights, and eat a fairly fruit and veggie filled diet. At that time, I wasn't really a junk food eater, and had fast food once a week when I would make way to the local Burger King for a Sunday Whopper Jr. and read my paper.
Around this same time, I noticed that I needed to wear sunglasses a lot more than I had in the past. I would go entire summers without eyeware, and looked at sun shades as a fashion item, rather than a tool for vision. Now I needed wrap-arounds just to get through a regular day. My eyes started to get conjunctivitis a lot when I was in my early teens. But, this was different. This was just a searing pain that happened only when daylight appeared. I used to joke with my then-boyfriend that my eyes were transplanted from a vampire.
One of my doctors noted that my right hip was a full inch higher than the other. He said that the scoliosis my Hyde Park doctor found a few years earlier wasn't profound, but it certainly had changed direction since I had my first scans. The letter "S" was taller and thinner, but the right hip was somewhat displaced.
The diagnosis would never have happened had a nurse not casually mentioned just a couple of years back- "Well, you have all the signs except for the light issues- your eyes seem fine." She didn't know about the glasses that are glued to my purse at all times in case I'm near a window, or getting the mail. She went bug-eyed when she caught a peek at the six pairs of glasses I had sitting in my purse in case of different light situations. She was the first person who had ever mentioned this disorder to me, and it was something she ran for the Merck Manual to explain.
"My best friend and her mother have this. I bet you do, too. You need to let the doctor know about your eyes!" The doctor didn't want to hear about it, though. In fact, he said, "It's obvious my nurse isn't a doctor, isn't it?" Well, no, it wasn't clear to me that this medical professional who actually listened to me was unskilled in medicine in any way. In fact, she is now a doctor, practicing in San Francisco, specializing in illnesses of the aged. But, I digress.
The pain I feel in my back is best described as a volt of lightening, pinpricked into the center of my spine, leaving hours of ache afterwards. Some days it would shoot all the way to the base of my head. Other days I would have a searing feeling, as if someone took a pizza cutter and was jamming it in between each vertebra. There would be times when sitting up was nearly impossible. Yet, there I was in the armed services, and there wasn't any room, time, or patience for undiagnosed back pain. I was given a number of trial medications, including Celebrex, to see if it would help. Robaxin gave me the most relief, and that was a clue but not a cure.
The guys on the ship had absolutely no empathy. As far as they were concerned, women didn't belong in their Navy anyhow, so having one more "whining" was just another reason for them to complain. Here was someone who always worked at least three fulltime jobs, or two jobs and school, and had been athletic, and now she was curled up in a ball in the bunk. Whatever was causing this, the work I was doing was apparently making it worse. After nearly four years, almost a full term in the service, I was given a medical honorable discharge.
The DD-214, which is the discharge papers all service members receive after ending term, stated I had a Service Aggravated Injury. The doctors were only sure about Ehlers-Danlos and wrote that into the box. My doctors were stumped as to what was causing the constant back pain, but they were sure with all their tests, that it was a "real issue", and wrote that into the box, too. I guess some people have "vague or imagined" issues, but I didn't know that at the time. I brought this paper with me to all of my future doctor appointments for the first two years out because I wasn't sure what to tell them about that pain.
Six months ago, another doctor casually mentioned, "Oh I see by your DD-214, you have Ankylosing Spondylitis. That is often missed." This wasn't on my paperwork, and my paperwork had been long filed by both me and the Veterans Administrative Hospital. This doctor had read my history from over 22 years ago. He was an intern, subbing for my regular doctor, very young, and very interested in why someone under 50 was in his office. He said he had heard I was a Hypermobile patient, and wanted to see what had been done for me in the past. And, he said, it wasn't uncommon for those who have Ehlers-Danlos Hypermobility Disorder to also show signs of AS, as the connective tissues are greatly affected by both.
Today's Questions- What was the "a-ha" moment for your doctors? When did you find out what was REALLY the issue, and when did your doctors discover it? Do you think that younger, eager, medical professionals are better able to comprehend symptoms than more experienced ones?
Showing posts with label Ehlers-Danlos. Show all posts
Showing posts with label Ehlers-Danlos. Show all posts
Wednesday, December 3, 2008
Tuesday, November 18, 2008
Physically Ill or Depressed or ...
There is a physical state called Dysautonomia. For those who have it, you are probably told you have Adrenal Fatigue, Fibromyalgia, or Depression. For those who never heard of the word, Wikipedia states: "Dysautonomia is any disease or malfunction of the autonomic nervous system. This includes postural orthostatic tachycardia syndrome (POTS), vasovagal syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and a number of lesser-known disorders. Other disorders, such as multiple system atrophy (Shy-Drager syndrome) and chronic fatigue syndrome,[ have dysautonomia as one of several system malfunctions." In English, you feel wiped out, you have a hard time moving, and you certainly don't tap dance and do the Lambada in public nor in private. It's a crappy way to feel.
For people with Ehlers-Danlos Syndrome Type III, also known as Joint Hypermobility Disorder, it's part of the reason why pain doesn't seem to disappear even after taking medications. When I first was diagnosed with EDS, I had no idea what would happen to me years from then. I only knew I had a great amount of flexibility, my fingers went wiggly, and I could snap my elbows, knees, ankles and fingers in and out of the socket at will. I also have been an insomniac for as many years, sleeping less than four hours a night at the longest stretch, and that added to the utter feeling of uselessness. When I was treated for depression, I was also subject to aphasia.
Aphasia is the disorder that a lot of seniors get- they can see and think of a word, but they have a problem bringing it to their mouths. I have that reaction every time I'm on anti-depressant medication. My synapses are being twisted around, and they seem to baffle the vocal functions. This could be the proverbial blessing for any of my boyfriends, or my husband, but it's infuriating for me. More about this affliction later, but for now- dealing with Dysautonomia is a problem for many women, especially those of us with joint disorders, including Lupus, Marfan's, and EDS, and those who are diagnosed with Cushing's and Thyroid disorders.
The first signs of autoimmune disorder started to appear around the time I was diagnosed with EDS. I would have long bouts with sinus infections, and I had tested positive for Mono for years from the time I was 15 until I was almost 30. I never "just" had a cold. I would end up with Bronchial Pneumonia. In the late 1970's and early 1980's very little was known about autoimmune disorders except for the work being done to uncover HIV. There was no clear answer as to why the body would attack itself, although women with fertility issues were often told that their bodies were attacking sperm. It made sense that our bodies would attack an outside source, but doctors didn't understand that our bodies would attack our own organs.
Those who suffer with Crohn's Disease are more than aware of that feeling. Their digestive tracts are in conflict, with their own bodies, and the pain is unbearable for many. For those who are diagnosed with Multiple Sclerosis, or Scleroderma, the reality is apparent to anyone around them- bodies attack themselves. But, for those with hidden illnesses, such as EDS, the obvious dysautonomia isn't easily presented. Doctors misread the signs of extended joint pain and collagen issues as a form of depression. As a result, misdiagnoses are common.
Depression is an all encompassing illness. It's not a "fake" illness. It is a serious, possibly fatal state of mind that can occur in anyone. Those who are deeply depressed don't understand the world outside of their cloud of pain. There is always a negative response to any positive comment. There is a self-deprecation that is far deeper than the local comic's observational chuckle. It is a weed of deep rooted horror that can be a lifelong struggle for some. The more depressed someone is the less likely he will eat well, exercise, bathe, sleep well, or even have healthy relationships. As the physical body gets worn down by bad nutrition, lack of hygiene, lack of sleep, and lack of human contact it starts to break down in others ways. Sometimes that means joint pains and aches. Sometimes that means migraines and constant illness. Depression does cause physical symptoms.
For a doctor to separate Depression from Dysautonomia from Fibromyalgia from Adrenal Fatigue, the medical professional MUST pay attention to the symptoms of the patient. It's not a matter of checklists, and not a matter of blood tests alone. It is an understanding of the person who is presenting the symptoms. This is the primary reason why most who are undergoing physical issues are misdiagnosed. Doctors do not have the time as long as they're scheduled through Managed Care, and they won't make time as long as they are funded by the number of people that can be seen in a day.
A patient is almost expected to spend years going through a variety of anti-depression medications without relief.
For those who need the help there are resources:
Depression and Bipolar Support
American Pain Foundation
The National Dysautonomia Foundation
Ehlers-Danlos Foundation
Adrenal Fatigue Organization
Fibromyalgia
Today's Questions- Did you have doctors tell you physical symptoms were Depression? Did you feel depressed and were dismissed? Do you find it hard to keep the same doctors long enough to have them know you as a person?
For people with Ehlers-Danlos Syndrome Type III, also known as Joint Hypermobility Disorder, it's part of the reason why pain doesn't seem to disappear even after taking medications. When I first was diagnosed with EDS, I had no idea what would happen to me years from then. I only knew I had a great amount of flexibility, my fingers went wiggly, and I could snap my elbows, knees, ankles and fingers in and out of the socket at will. I also have been an insomniac for as many years, sleeping less than four hours a night at the longest stretch, and that added to the utter feeling of uselessness. When I was treated for depression, I was also subject to aphasia.
Aphasia is the disorder that a lot of seniors get- they can see and think of a word, but they have a problem bringing it to their mouths. I have that reaction every time I'm on anti-depressant medication. My synapses are being twisted around, and they seem to baffle the vocal functions. This could be the proverbial blessing for any of my boyfriends, or my husband, but it's infuriating for me. More about this affliction later, but for now- dealing with Dysautonomia is a problem for many women, especially those of us with joint disorders, including Lupus, Marfan's, and EDS, and those who are diagnosed with Cushing's and Thyroid disorders.
The first signs of autoimmune disorder started to appear around the time I was diagnosed with EDS. I would have long bouts with sinus infections, and I had tested positive for Mono for years from the time I was 15 until I was almost 30. I never "just" had a cold. I would end up with Bronchial Pneumonia. In the late 1970's and early 1980's very little was known about autoimmune disorders except for the work being done to uncover HIV. There was no clear answer as to why the body would attack itself, although women with fertility issues were often told that their bodies were attacking sperm. It made sense that our bodies would attack an outside source, but doctors didn't understand that our bodies would attack our own organs.
Those who suffer with Crohn's Disease are more than aware of that feeling. Their digestive tracts are in conflict, with their own bodies, and the pain is unbearable for many. For those who are diagnosed with Multiple Sclerosis, or Scleroderma, the reality is apparent to anyone around them- bodies attack themselves. But, for those with hidden illnesses, such as EDS, the obvious dysautonomia isn't easily presented. Doctors misread the signs of extended joint pain and collagen issues as a form of depression. As a result, misdiagnoses are common.
Depression is an all encompassing illness. It's not a "fake" illness. It is a serious, possibly fatal state of mind that can occur in anyone. Those who are deeply depressed don't understand the world outside of their cloud of pain. There is always a negative response to any positive comment. There is a self-deprecation that is far deeper than the local comic's observational chuckle. It is a weed of deep rooted horror that can be a lifelong struggle for some. The more depressed someone is the less likely he will eat well, exercise, bathe, sleep well, or even have healthy relationships. As the physical body gets worn down by bad nutrition, lack of hygiene, lack of sleep, and lack of human contact it starts to break down in others ways. Sometimes that means joint pains and aches. Sometimes that means migraines and constant illness. Depression does cause physical symptoms.
For a doctor to separate Depression from Dysautonomia from Fibromyalgia from Adrenal Fatigue, the medical professional MUST pay attention to the symptoms of the patient. It's not a matter of checklists, and not a matter of blood tests alone. It is an understanding of the person who is presenting the symptoms. This is the primary reason why most who are undergoing physical issues are misdiagnosed. Doctors do not have the time as long as they're scheduled through Managed Care, and they won't make time as long as they are funded by the number of people that can be seen in a day.
A patient is almost expected to spend years going through a variety of anti-depression medications without relief.
For those who need the help there are resources:
Depression and Bipolar Support
American Pain Foundation
The National Dysautonomia Foundation
Ehlers-Danlos Foundation
Adrenal Fatigue Organization
Fibromyalgia
Today's Questions- Did you have doctors tell you physical symptoms were Depression? Did you feel depressed and were dismissed? Do you find it hard to keep the same doctors long enough to have them know you as a person?
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