Let me start of by saying, I am very happy I don’t have cancer. It’s a horrible disease and I don’t wish it on anyone. That being said, telling me “At least it’s not cancer” is not making me feel any better.
Fibromyalgia the mysterious disease
I live with Fibromyalgia, there’s not a whole lot known about the disease. We have recently found out that it’s a progressive neuro-disease. At least that’s what they think now. It changes about every year, because the fact is, they really don’t know. It’s mysterious and there is no cure.
I am in pain every single day, the pain travels through my body. I never know how bad it’s gonna be, where it’s gonna show up or if I’m even able to function at all.
With fibromyalgia comes the fibro fog, or brain fog. That means that it feels like there is a thick fog in my brain preventing me to think clearly. Or even find the simplest of words, in any laguage for that matter (I speak three on a daily basis)
Next to my Fibromyalgia I have been diagnosed with Graves’ disease and Hashimoto’s disease (both autoimmune thyroid disorders), Celiac disease and Raynauds disease (both autoimmune as well). They say when you have one autoimmune disease, more will follow. Why is that though?
Many vague symptoms
Prior to being diagnosed with any of my conditions I had a long list of vague symptoms that didn’t seem to correlate to eachother. The first thing they test for is cancer. It’s the most well known disease that can show itself in different ways.
Along with a bunch of other test, including general autoimmune (ANA) test they came back. All your test results are negative. You are the picture of perfect health.
People around me were relieved. “At least it’s not cancer”. While I was relieved I didn’t have cancer, I still did’t know why I felt so ill all the time.
At the young age of 19, after 3 years of being tested on a range of things without any results, this one came back positive. I had Graves’ disease. It was so extreme and in such far stages, that my main symptom (being out of breath) was caused by the strain on my heart.
At the age of 19 I was rushed into the heart monitor room because they were afraid I could have a heart attack at any moment.
But at least it’s not cancer, right?
The way to treat Graves’ disease back then, is to give you some type of chemo therapy, to slow your thyroid down. By the way chemo therapy is also used on patients with Lupus, RA and other autoimmune conditions as a treatment option.
A decade later
Fast forward a decade and some. The Graves’ disease is in remission, yay! I’ve gotten all the new diagnosis I’ve mentioned above. But also a msyterious new thing that is making me loose weight, fast. Very fast!
Even though I eat plenty, I keep loosing weight. Again they have done a lot of test, tested for cancer again. All clear. “At least it’s not cancer” someone says to me. Uhm that’s all nice and all, but I am loosing weight so rapidly that my organs are now in danger of failling. And they can’t figure out why.
“At least it’s not cancer” is again not making me feel any better.
6 months go by, and I weigh 45kg/99 lbs and I am 1.73cm/5 feet 7 I am very very underweight. Finally they figure out I have a bacteria causing all my issues and the road to recovery can begin. Yet again
What does the future hold?
At this point in time I think I have all my autoimmune issues and other health stuff under control. They are chronic, meaning they will never go away. The furture is uncertain, because we simply don’t know how my issues will progess with time.
I have new undiagnosed issues, like my teeth dissolving from the inside out. No idea why that is happening, but we’re trying to treat it.
I concider myself very lucky that I don’t have cancer. That is a fact. It’s also not what the article is about. My point is, there are things that are just as bad and deadly as cancer. And things that need to be treated the same way as cancer. The diagnosis “not cancer” isn’t always a good one. Please remember that when you tell your friend next time “At least it’s not cancer”
I have had stomach problems since I was a teenager, but I took me a until I was in my thirties to figure out the cause of my issues was actually Celiac Disease. As a teenager, I always had terrible cramps and acid reflux. By the time I was sixteen, my doctor put me in acid blockers to try to control my symptoms. I took the medicine every day for years and it helped, but my symptoms still persisted. Being that I was sixteen, the doctor’s attributed the cramps to my monthly cycle and figured the acid blockers would resolve the rest. But they didn’t. I eventually just learned to live with the symptoms and go about my life. I thought this is just how my life would have to be. After all, I was feeling better, just not good.
When I was about twenty, my cramps became even stronger and more frequent and I was having trouble coping with the pain. I once again returned to my doctor, and he suggested that I do an elimination diet to see if what I was eating may be contributing to my symptoms. He suggested I replace the multigrain bread I normally ate with plain white bread or spelt which would be easier to digest and that I should eat a lot of yogurt, which has good probiotics and is easy to digest. He also prescribed a medication to help with the cramps. I made the dietary changes, took the medication, and it helped a little, but I was still suffering.
It’s Hard to Work when You’re Chronically Ill
While I was trying to figure out the cause of my gastrointestinal issues, I was also working a full-time job at a call center. This was the type of job that required you to clock in and out every time you took any kind of break. Even if you were just going to the bathroom, you were required to clock out when you left and back in when you returned. My symptoms had gotten so bad that I would have to go to the bathroom six or more times a day and I could be in there for ten minutes each time. Well, my employer took notice of this and I was called in for a meeting. As much as I tried to explain that I was legitimately ill and couldn’t help it, all my employer saw was the time and my contract was not renewed. After about six months, this extreme flare finally calmed down. My stomach ache and acid reflux were just a part of my everyday life, but we’re not so bad that it was disruptive to my day or my life.
On Vacation, but not from my Symptoms
Some time passed and now I was about 26 and I went on a vacation to the Azores, Portuguese islands in the middle of the Atlantic Ocean. I looked 4 months pregnant! My stomach was extremely swollen and it hurt a lot. I had been been living on antacids and other medicines, but nothing was really working anymore. At the time, I thought my body may be reacting to the different foods I was eating. In this area, they tend to prepare everything using a lot of butter and I had stopped eating butter years ago, so I thought I must not be used to it anymore and that’s what was probably causing my reaction. I was convinced the butter was the cause of my problems. Even when I just ate a salad, which obviously had no butter, I still felt really badly. It was so extreme. I was only there for a week or two, but when I showed people pictures from my trip, my physical transformation was so drastic that people would ask me if I really was pregnant.
I didn’t know what was going on. As chronic illness life goes, you get some bad days, then you get some good days. Every year you have is different. Still, I was undiagnosed and I went on with my life. All the while, I kept taking stomach liners, acid blockers, and other medicines for my bowels. This became my daily regimen in order to live without constant abdominal pains and cramps.
Some more time past and now I was 31 or 32 years old. I started researching more into my health and looking into natural remedies and the holistic way of living. I wanted to change my lifestyle to try to feel better. I had stopped eating sugar years prior and it made me feel so much better, but I noticed after a couple of years, the effects of that wore off or something. I decided to make some other changes I hoped of regaining that feeling. I knew I had to do something drastic. That’s when I started the autoimmune protocol diet. For this diet, you cut out all sugar, lactose, gluten, rice, seeds, and beans and then slowly start reintroducing them back into your diet to see which ones are aggravating your body. For me, cutting out gluten was the hardest. I’d literally dream of bread and croissants and pizza. It was crazy!
After being on the autoimmune protocol diet for about 3 or 4 months, I really did start to feel better and I tried to introduce things back into my diet. During that time, I would get together with a group of friends monthly, and we would cook and eat dinner together. This day, we each brought something to be grilled and so we would all prepare the food and then share it amongst the group. One of my friends made something breaded. I don’t remember what is was, but it was being cooked on the same grill with everything else. As I was still not eating gluten, I did not eat the breaded food, but instead partook in the other options. but it was in the same grill.
By the time I got home and I was so sick! I got cramps and I had major brain fog. I couldn’t think straight. I was sweating profusely and was sick and exhausted for three days. I thought this was an extreme reaction, so I started doing research into what could have caused it. That’s when I discover the cross-contamination that can occur with gluten. Still, I was surprised that I had such a strong reaction. I learned that this is actual quite normal when someone is exposed to gluten after long periods of time without it.
My Daughter is Following in my Footsteps
About six months later, I noticed my daughter, who was about four at the time, was very tired and cranky all the time. She was a picky eater and would only really eat bread, potatoes, doughnuts, and of course candy. This seemed strange to me, so I brought her to he pediatrician thinking she may have picked up a bacteria or parasite somehow. We went to the doctor and had her tested, but the tests were negative for any bacteria or parasites. Still, I knew something had to be wrong, so I asked her doctor what else could be done. He told me there were two things we could try. The first option was to virtually turn her inside out running tests to look for anything and everything. Since she was still so young, her doctor thought that would be extreme. The second option was far less invasive. He suggested eliminating gluten for about two weeks to see how she responded. This made a lot of sense to me in light of my own experiences with gluten, so we decided to give it a try.
Going gluten-free was very upsetting to my daughter at first. She had seen the strict autoimmune protocol diet that I had been following and thought that was what she would have to do too. I explained to her that what she was doing was not nearly as strict. She would not have to give up everything, only the gluten. Over the next three days, we finished all the bread and doughnuts and other gluten-containing foods in the house and went 100% gluten-free. The rest of my family wanted to support, so they stopped eating gluten too so she wouldn’t feel so badly. Her dad, my mom (her grandma), and my sister (her aunt) all gave up gluten so my daughter wouldn’t feel alone.
After four days, I had a different child. She had energy and was not so cranky. I could hardly believe the difference! Just by not eating bread, cookies and other gluten-containing foods, I had my daughter back. I still let her have some treats, like cake, but she ate the gluten-free kind instead, as I wanted her to still be able to eat similar foods to what she was used to. After a month, we went back to the doctor to report how it had gone. The doctor said that her improvements indicated that she has celiac disease.
It’s in my Genes!
By this time, my daughter was feeling better and had gotten accustomed to eating the gluten-free foods, so my mom and sister thought it would be okay for them to go back to eating the regular bread and other foods they had given up to support my daughter, but their bodies had other plans. When they ate regular bread again, they got really sick. Unbeknownst to all of us, we all had celiac disease.
It all made sense now. As a baby, my daughter had the worst acid reflux. She couldn’t hold her milk down and she never wanted to eat the porridge. It was difficult to make her eat stuff because she couldn’t keep it down. Thankfully, now we know why. She had been diagnosed with celiac when she was 4 and now we know that it tends to run in the families.
Everything is Starting to Make Sense Now
It took me over 30 years to figure out that I have celiac disease. I believe that many of my autoimmune issues stem from me having undiagnosed celiac disease. Celiac disease is an autoimmune disease in which your own immune cells track the gluten enzymes within your small intestine. Your body is basically attacking itself. Looking at my timeline of all my diagnosis, I think this could be the cause of many of my chronic illnesses. I started having my Graves symptoms at 16, but I only got diagnosed at 19. Then at 28, I had Hashimoto’s Disease that went undiagnosed for about 6 years. After my Hashimoto’s diagnosis, I started having Raynaud’s disease, which is also an autoimmune disease that effects blood flow. If you don’t figure out what’s causing autoimmune conditions, they have a tendency to accumulate. Since I discovered my celiac disease so late, I wonder if that may have been the catalyst for my other conditions. I may never know.
I hope my family’s story helped you in some way. I know by sharing my experiences with my own family, my mom and sister have given up gluten and are now feeling better. It’s not for everyone though. Some people have experimented with going gluten-free to try to lose weight or think it’s the cure for any ailment, but it’s not. Going gluten-free is not necessary for everyone. If you think you may have celiac or be gluten intolerant, talk to your doctor and consider trying an elimination diet to find out. Some people can eat gluten with no problems, but for those with celiac, it is a real and serious autoimmune condition that effects their daily life and not just another dietary fad.
I didn’t know I had celiac disease, also know as a gluten allergy, until about six years ago, and now I have to be careful eating everywhere I go. Gluten can be anywhere, even hidden in places that you wouldn’t expect it to be. I have had to become a food label detective in order to keep myself as well as my daughter safe. When you have a gluten allergy, or any food allergy for that matter, there are some things you need to consider in order to remain safe.
Think and Prepare Ahead
Recently, I was visiting my friend, Hemme in her home. She knows me very well and is aware of my dietary restrictions, so prior to my visit, she asked me for a list of foods that will be safe for me to eat during my visit. I sent her a list of foods that are generally okay for me to eat, and she actually did a great job accommodating my gluten allergy. Even still, I nearly had a reaction.
She was preparing fish with a breading and thought that she could simply make mine without the breading and I would be fine. What she didn’t realize is that by having the fish on the same tray or even in the same vicinity, cross-contamination could occur. This is a huge problem people with gluten allergies commonly encounter. She was really happy I caught her and called this to her attention before I got sick, but such realizations are not so easy when dining out in a restaurant.
Then, Hemme was going to prepare some pasta. I eat lentil pasta because I can’t have the corn or rice that is often in other kinds of gluten-free pasta. She consulted the list I had sent her prior to my visit and bought lentil pasta for me to eat with my fish. Hemme bought frozen lentil pasta instead of fresh or dried. I read the package and sure enough, it contained cornstarch and rice flour, so I could not have that either. Sometimes things that seem like they are safe at first glance really aren’t.
The Packages are Lying!
I’m sure we have all been to the grocery store and have gotten lured in by all the different packages. We look at the front of the package and pick which variety of a product to buy. It may list a few key ingredients and maybe some nutritional information, but that’s just the beginning of the story. In order to get the full picture, you have to turn the package over to the back. That is where you’ll find the rest of the information: all the ingredients and nutritional information.
Sometimes, you even have to be a scientist or detective to find out exactly what you are eating. Especially with more processed foods, ingredients may go by different names or contain additives to make foods shelf stable for longer periods of time. Sometimes you almost need to recognize the elements of ingredients or certain key words to know if something is safe to eat. It can be very deceiving. For example, something that does not typically contain corn may use corn syrup as a sweetener. If you can’t have corn, then you also can’t have corn syrup or corn starch, and therefore this product is unsafe to eat.
The Dangers of Cross-Contamination
My daughter also has celiac disease. I have to educate people as to what is safe for her to have when I am not with her. She went to my friend’s house one day to play with her daughter. I’ve eaten there many times before and have never gotten sick, so I thought she would also be safe eating there. My friend is always very careful about how she prepares food, but she had gotten her some fries from a takeout place. Well, later that night, my daughter wasn’t feeling well and I recognized her symptoms as a reaction to gluten. I was really surprised. I thought maybe I hadn’t cleaned the oven well enough after my boyfriend used it to make regular (non gluten-free) bread. I questioned my friend about what my daughter ate when she was with her, and she told me about the fries.
What my friend didn’t understand at the time is that even though the fries themselves might be safe, if they are fried in oil with other things that contain gluten, this can cause cross-contamination. That’s why when we go out to eat somewhere, we have to be sure that if she orders something like fries, they are the only thing the oil is used for. The restaurant using the same oils to fry something like chicken nuggets can result in an allergic reaction. Similarly, cooking areas and utensils need to be sanitized or designated as for gluten-free use.
Allergy Vs. Intolerance
Some people may not have a true allergy to gluten, but are rather just gluten intolerant.
When you’re gluten intolerant, you may get sick when you are exposed to gluten. Your stomach may hurt, or you’ll feel tired and just generally may not feel well. With a gluten allergy, also know as celiac, your body will actually attack the enzymes of gluten within the body creating an autoimmune response. This can often lead to other health issues as well. While not confirmed, I suspect that some of my other health issues may actually stem from having celiac disease and eating bread and pizza for 30 years.
Gluten is Everywhere!
Gluten is a group of proteins, termed prolamins and glutelins, stored with starch in the endosperm of various cereal grains. It is found in wheat; barley, rye, and oats as well as products derived from these grains such as breads and malts. It’s is found in many of the most common foods we all enjoy eating and can be very difficult to avoid. It’s in breads, cookies, cakes, pizza, cereals, and many other places that you wouldn’t suspect.
You always have to check the back of the package when you are trying to avoid gluten because, like I said before, the front of the package lies and the back of the package actually tells you what’s inside. You have to make sure that it says that it doesn’t have any wheat or wheat derivatives in it and that it actually says, “gluten free”. Gluten can be in unexpected places, even in foods you’d think would be safe, like chocolate or hamburgers. It is necessary to become a food detective and read what exactly goes in to a given product. This can be tricky as it can vary by brands of similar products and even by different varieties of a particular brand.
While I focused on gluten allergy and intolerance, as that is what effects my daughter and me, the same potential dangers exist when addressing any food allergy or sensitivity. Always consult the back of labels when addressing any food allergy or sensitivity. Even things that appear safe at first glance may not always be. Beware of cross-contamination. Taking these steps will help keep yourself and your loved ones safe and free from food-related reactions.
Tip number 1 is probably the hardest but most important.
Don’t accept anything but support.
This is something that can be difficult. Especially if you
have close family and friends who just don’t seem to get it.
Honestly, if they cared, they’d get with the
I’m not talking about the people who mean well but
accidentally slip up. I’m talking about the people who introduce you as “one of
those gluten-free people” or who don’t apologize when they accidentally serve
you non-gluten-free food.
When even the smallest crumb can determine if you’re going
to be a slave to the porcelain throne for the next few days, you have to take
Now sometimes you need to “earn” support. Despite having a
pretty serious diagnosis behind you, sometimes people need convincing of how
real this disease is.
My top convincing statements:
My body literally attacks itself when I eat gluten
I’m at higher risk for stomach cancer when I eat gluten
I’m at higher risk for osteoporosis
I’m sick for days after eating gluten
Try anything that conveys the severity.
If they still don’t get it, distance is your friend and when
you do run into these people, make it clear whenever possible that this is not
just some fad diet you’re following for a few months, this is for life.
While support is vital to managing relationships with Celiac
Disease, you can’t just expect everyone to learn about your condition
Celiac disease is tricky, and you can share as much or as little as you want with people. It’s important, however, that people understand that this condition is a lifelong condition. This means you aren’t going gluten-free temporarily. This diet is for life.
Basically, managing your relationships with Celiac means
everyone including yourself being fully aware of what this condition entails.
be Afraid to Ask for Help
Being gluten-free with Celiac Disease can be exhausting.
Watching for ways people can contaminate your things and food (like when your friend
eats a sandwich and then grabs your notes) is time-consuming and energy
draining. I swear I wash my hands almost every hour out of fear.
Being aware and advocating for yourself can be overwhelming
so don’t be afraid to ask for help.
Personally, I ask my friends to act as buffers for me when I
order at restaurants like Chipotle. I know I am the most unpopular person in
the building when I ask the line to change their gloves and serving utensils in
support of my allergy. Having people in front and behind you to prevent hearing
what people are saying under their breath can be the world of difference. Even
just knowing you have 2 people in the building who support this whole effort is
I’ve also had friends ask for their meals to be served
separately from mine to prevent the potential of cross-contamination when
Get creative and let your friends and family be allies.
Make it easy for people to support you by laying out your
needs for them. Whether it’s your friends, family, or significant other, be
clear on what it is that you need from them.
My friend’s, for instance, know that I get severely ill when
I eat gluten, so they are all aware that if we go out for dinner, we have to go
somewhere I can eat.
My boyfriend, on the other hand, knows that if we want to
share a kiss, he needs to brush his teeth and rinse with mouthwash in order not
to transfer gluten to my mouth.
You might need your partner to be gluten-free around you, or
be gluten-free in the house. Whatever you need, make sure you are clear on
those needs and the consequences if those needs aren’t met.
For instance, my boyfriend knows if he doesn’t brush his
teeth and rinse with mouthwash, I will break out in a horrible rash and feel
sick. Who wants to be the cause of their loved one getting sick? Not a partner
worth any of your time.
Friendships, family, significant others, all of these
relationships can be tough to maintain. For a long time, I used to think no one
would want to date me.
Comments like “you’re special” and “wow, that’s a lot”
plagued my social circle for a long time. People used to say that it was a
sacrifice dating me, but despite my Celiac Disease, I grew to practice
self-love and compassion. I grew to understand I am worthy.
I am worthy of respect, effort, and consideration, and
so are you.
The world is a dangerous place for Celiacs, dramatic but
true. I don’t need anyone who isn’t on my side traveling it with me.
Written by Tayler Silfverduk. She is a Dietetic Technician Registered (DTR) with Celiac Disease. She’s been living with Celiac Disease since high school and it is her mission to help other thrive on a gluten-free diet.
It was a windy day, but so beautiful out on Lake Michigan. However, I really tested my body’s ability to move that day. First, I want to tell you a little bit about myself.
I have been diagnosed with multiple disorders, two of which can cause chronic pain and two others are definitive. Therefore, I talk about them more than the others. All of this has affected nearly every facet of my life. From relationships where I’m deemed lazy or overreacting, to jobs, to friendships where I miss out on huge events (weddings, births, etc.) in those friends’ lives; all because I’m not feeling well. Let me provide a little more detail.
The Frustrations of Chronic Illness
I have days, sometimes weeks, where my pain level is a low 3 and days/weeks where my pain level is unbearable to the point I want to go to the hospital, get an IV of morphine and hope for the best, although it doesn’t work. There are days I wobble when I walk because my hips are so unstable due to the Ehlers-Danlos causing “loose joints”. There are days where I can’t lift my arms above my head because my shoulders hurt. My fingers swell. My ankles roll out from under me. My knees lock up, and my neck feels as though it can’t support my head anymore. On top of that, having Celiac disease means anything with gluten causes bloating, joint pain, severe stomach pains, fatigue and other problems which are a little too gross to convey. Sometimes, sufferers of chronic pain are labeled pill chasers or hypochondriacs. However, we know something is wrong, and all we really want is to feel better, or at least live a near-normal life again. So, when we finally get diagnosed, we feel vindicated! We feel as though our entire life finally makes sense.
Warren Dunes Adventure
One Saturday not too long ago, I was climbing to the top of the Warren Dunes with my 9-year-old daughter, Gracie, and I had a moment when I wanted to give up. I was pushing through the sand to get up that hill, and I stopped to sit down. All it took was one look from Gracie, and three words, “hike faster, mom”, for me to realize how much of a damper I’d put on our day if I couldn’t make it. So I dug my feet into the sand and I pushed myself to the limit, not past my limit though, for I didn’t want to pay for it in the days beyond. I didn’t give up and I made it. I did it. It was SO worth it. My daughter deserved that day. For her and for my youngest, Mira, I will never give up. I will try to push myself until I KNOW I can’t go on any longer (I don’t want to permanently injure myself at almost 30 years old).
My Spoonie Pledge
I will continue to be a voice for those too afraid to speak up. I will forever push people to see as many doctors as possible if they KNOW something isn’t right with their bodies. It was a long and arduous seven years to find someone to truly listen to me and get me to the right doctors. I had twenty-nine years of weird things that I could do with my body, but then, a full seven years of pain, dislocations, torn ligaments, swelling, hives, gastrointestinal problems, bladder issues, fatigue, dizziness, fainting episodes, etc. Seven years of thinking I was crazy. Now, at least I know that I’m not crazy, or at least not in that way.
We Are All Warriors
It took until then to realize why they call us “warriors”…. I am a fighter. I am a chronic illness/pain/eds/celiacs warrior. I will live my life and I will be the best I can be at all times. WE ARE ALL WARRIORS! We can break the barrier and take the stigma away from chronic illness, one voice at a time.
You see them everywhere, awareness ribbon charms, pins, magnets. Do you ever wonder what the colors mean or wonder which color represents your chronic illness? We have gathered the most common Spoonie and Chronic Illness ribbon colors here to help you out.
Dysautonomia (“Dys” from the Greek word for bad or malformed and “Autonomia” referring to the body’s autonomic nervous system (ANS)) is an umbrella term referring to a failure of the sympathetic or parasympathetic parts of the autonomic nervous system (ANS). It may also refer to an overactive ANS. The ANS is what controls the involuntary functions of the body. It affects the nerves, which carry information from the brain to the rest of the automatic nervous system, including the heart, blood vessels, bladder and sweat glands.
Dysautonomia can cause problems within the heart, affecting heart rate, body temperature and blood pressure. It is often a secondary symptom of other chronic illnesses. Some dysautonomia conditions are reversible however, many conditions, such as co-morbidity with Parkinson’s disease are not. It may affect a local area of the body, or be more generalized throughout the body.
Dysautonomia affects over one million Americans and close to 70 million people worldwide. It affects both men and women. Despite its prevalence, dysautonomia may take a long time to be diagnosed due to the lack of awareness among patients and physicians. It is an “invisible” disease, as symptoms occur within the body. Often symptoms are more observable after the patient is exposed to heat, anxiety, or physical activity.
The most common forms are POTS (Postural Orthostatic Tachycardia Syndrome), NCS (Neurocardiogenic Syncope), MSA (Multiple Systems Atrophy) and PNF (Pure Autonomic Failure).
Dysautonomia can occur due to injury of the ANS from another disorder, and may be genetic. It may also be caused by exposure to toxic chemicals, trauma or a viral illness. Some of the diseases that may cause dysautonomia are:
Diabetes Multiple Sclerosis
Alcoholism Guillian Barre Syndrome
Parkinson Disease POTS
Ehlers-Danlos Syndrome Lyme disease
Injury to the spinal cord or nerves HIV
Celiac Disease Lupus
Symptoms and Diagnosis
To diagnose dysautonomia, the physician will test the functionality of the ANS, especially on the organs that are affected. Tests will likely include measuring blood pressure and heart rate in several positions, using a tilt table, sweat testing, and deep breathing.
Common symptoms of dysautonomia are fatigue, impotence in men, faintness upon standing, rapid pulse rate with exertion, weakness, dry mouth, cognitive impairment, orthostatic hypotension, urinary incontinence, and constipation.
Treatment and Management
While there is generally no cure for dysautonomia, treatment of the co-morbid illnesses may be beneficial in reduction of the symptoms. Medications may be used to treat the individual symptoms of dysautonomia, such as controlling blood glucose and using medication to treat acid-reflux, or giving injections of botulinum toxin type A to manage hyperhidrosis (excessive sweating). Other management measures can include elevating the head of the bed, and adding a high-salt diet and other lifestyle changes. Taking cooler showers, standing slowly from a sitting position and other postural changes may help.
Depending on the cause of dysautonomia in the individual, prognosis can vary.
Hello! My name is Amanda (or Mandy, I go by either one), I’m 24, and I’m a “spoonie for life.” I was diagnosed with Gastroparesis in 2010, and it was decently well managed (only 1-2 ER visits a year) until early 2015. At that point, my overall health took a big turn for the worse, I was in and out of the hopsital, and my health was an absolute wreck. This year has been filled with new specialists, many hospitalizations, countless tests, and new diagnoses. I have a decent list, but my “main ones” are Gastroparesis, Fibromyalgia, Celiac Disease, and Dysautonomia… and there’s an unfortunate possibility there’s still something going undiagnosed.
Every day is a struggle— a struggle to eat, to not lose my balance when I stand up, to walk up the stairs without taking a break, to push through the pain and the awful fatigue… but I’m a fighter!
Despite all this, I still work, in fact I own my own business! I’m self-employed as a horseback riding instructor. When my health allows it, I’m also a horse trainer. But I can teach while sitting down or while having a bad health day, so I try to make teaching my focus. I work 6 days a week, just not very many hours at a time due to fatigue.
My doctors have thankfully found a good mix of medications for me and I’ve been staying out of the hospital lately. Now that I’m stabilizing, I hope to start volunteering at a therapeutic riding facility this upcoming spring. I eventually want to become a therapeutic riding instructor, or perhaps even get into hippotherapy. I strongly believe in the healing and strengthening power of horses. The horses I work with keep me sane and focused through this crazy life I’m living 🙂
The spoon theory explains how to cope with chronic illness using spoons as a metaphor for our limited energy supply. It was originally written by Christine Miserandino. You can find the original article here.
People who could relate to the spoon theory started to refer to themselves as spoonies. A spoonie is a person with an invisible illness or chronic pain.
Here at The Unchargeables we use the battery analogy to explain our limited energy levels.