I recently got an opportunity to talk with a representative from the Diamond Headache Clinic and they have shared this awesome presentation on childhood migraines, including abdominal migraines that were actually one of the first diagnoses I considered when I first began looking for answers to explain some of the many gastrointestinal symptoms I had as a young child myself. I thought this presentation could be a really good resource to share here in case any of these symptoms can help anyone still looking for answers for their own symptoms.Courtesy of https://www.diamondheadache.com/
The weekend before my next round of cardiac testing started off pretty average, at least as far as my symptoms anyway. Having just recently recovered from the peculiar reaction I had to the one dose of the new beta blocker the cardiologist prescribed (before I was taken off of it when additional cardiac testing was ordered), I was relieved to have a so-called “break”. While I’ve learned to manage life with my usual, everyday symptoms, the real struggle happens when these symptoms either intensify or another one jumps in the mix, making everything that much more complicated and impossible. I kept myself busy through that Sunday afternoon, trying to catch up on everything that had fallen behind and allowing myself to forget about the news from the week before. Perhaps it was all of the stress I was under, I dunno, but that night things everything began to take a turn for the worse.
Given, I had been pushing both my mind and body past the limit by adding more and more things to my to-do list. Honestly, it was way more than I was capable of handling all on my own. Half of this was my own fault for saying yes to too many things, but the other half involved stuff that was dumped in my lap last minute and they were things that I had no choice but to fit into my schedule. Either way, there was no time for any type of rest or recovery and I knew it wouldn’t be long until my body would decide to revolt against me for treating it so badly the last few weeks. Sure enough, I didn’t have to wait that long.
Exhausted, I climbed into my brand new bed and was so excited that I’d finally be able to get a good night’s sleep before my cardiac MRI the following morning. It must have been about 3 a.m. when I was awoken suddenly by a pain in my chest. It wasn’t a sharp pain really. More of a dull, yet stabbing, kind of pain and I noticed that I was a little wheezy and that my nose was also starting to get stuffy. Am I getting a cold? Just what I need right now, with all I have going on. Hopefully, it is just allergies, I think to myself, and I climbed out bed to find some medicine so that I can go back to sleep. I take some additional allergy meds, aside from my daily dose, and hope that it’ll do the trick.
I attempt to go back to sleep, but it was very short-lived. Just as suddenly as the ” cold-like” symptoms came on, next was the onset of extreme abdominal pain, generating from both my right and left side, and gradually moving into the small of my back. Usually, the abdominal pain is focused to my left side, although occasionally I feel it either just above my belly button or lower in my pelvis, just depending on the cause that day. The amount of pain with this, though, was unreal and I have a high tolerance for stomach pain.Shortly after the abdominal and back pain set in, both the muscles and joints in my hands, arms, legs, and feet began to swell slightly, but they instantly became very stiff, making it nearly impossible to find a comfortable way to lay down. Still, while the way that everything set in was slightly atypical for an incoming flare-up, it was nothing I hadn’t experienced before and I just assumed I had done too much. In fact, I was actually kind of grateful that it wasn’t a cold or virus coming on.
At some point during the night, I must have fallen back asleep. My alarm woke me a few hours later and I was actually surprised that I didn’t feel worse than I did. Most of the symptoms from the night before (well, really a few hours before) had gone away, which again, I was grateful for as the ride to the hospital is about an hour and a half away. Not to mention that the MRI itself was supposed take anywhere from an hour and a half to two hours on its own, plus the drive time back. The unfortunate part of seeing doctors in a bigger city, it makes for a really long day.
Anyways, my husband and I get in the car and start the long trek to the main hospital. About 20 minutes into the drive, more random symptoms. All of a sudden, it felt like morning medications were coming back up and becoming lodged in my chest and throat. The nausea increased so hard and so fast, it took everything I had not to throw up in the car. I was plagued by a strong, metallic taste and my muscle began to burn. And not just burn, they felt like they were on fire.
Yet, despite all these symptoms and how uncomfortable the car ride had become, I still wasn’t overly concerned. I was just happy at the fact that I was having active symptoms during the time a test was going to be performed, hoping it would increase the chances for additional findings.
Sadly, this is what it has come to these days –
I’ve resorted to praying for illness and pain,
just so I can get some answers.
By the time I finish the MRI, symptoms are gone. Once we got home, I decided to take a nap since I didn’t get much sleep the night before and, yet again, I awaken to -you guessed it- the same thing. If it wasn’t so painful, I would have been extremely angry and irritated but this time around, it was hard to convince me that I was truly burning from the inside out.
The only way I can describe this sort of pain I’m experiencing is by relating it to how it must feel just moments before you spontaneously combust.
I’m in tears with how bad it burns. My skin is literally hot to the touch, unlike earlier in the day, and starting to change color. It looks like I have been out in the sun all day tanning, even though I obviously had not. There’s no bumps, no itchiness, no rash. Just burning. And it’s coming from INSIDE of my body – just under the skin, almost on top of the muscles. No lotion or medication can relieve it, not even the arsenal I keep in my medicine cabinet.
Perhaps I didn’t roll long enough.
And not only is the burning constant and consistent throughout 75% of my body, it continues on for hours and hours on end, lasting approximately 9 hours before it was all said and done.
As if that wasn’t enough, other symptoms begin appearing as well during this “outbreak”. My heart starts racing, making my body feel like it is running a silent marathon inside. Next I start trembling and shaking, only making me more dizzy and nauseous, before initiating more traditional feelings of pain to the right side of my face, including the throat and jaw. When the pain moved across my chest and down my left arm, I really got scared.
Oh my god- I’m having a heart attack.
At least that’s what I thought anyway. In all reality, though, I really wasn’t.
But you can see how I’d think that given the most recent test results and the amount of stress I have put myself under lately. I guess this was a friendly reminder that I need to make rest a bigger priority. Besides, have you ever looked up the common warning signs of a heart attack in women?
I pretty much live with these symptoms every day.
How would I ever know if I was truly having a heart attack?
Still, I have no idea what this was or the cause of it.Thankfully, the cycle stopped after just three days of on and off random symptoms, but I haven’t experienced any since. *Knocks on wood*
Perhaps something was caught on my MRI. I guess I’ll ask about it at my follow-up appointment with cardiology if it comes back again.
To be continued…
The sadness always follows a hard blow.
I know these feelings won’t last forever,
but it feels like it’s never going to get better.
I feel like I am never going to get better.
It doesn’t help that I have been green with envy lately. One of the support groups I belong to for the compression syndromes has had multiple members just recently complete surgery or are scheduled to have it done soon. Despite the long recovery time, not to mention the pain and time spent in ICU, I can’t help but feel a twinge of jealousy. I’m happy they have doctors that listen to them and are willing to do research. And that they will hopefully be getting better. But I can’t help but WISH that was me.
Yes, I said it.
I am in fact JEALOUS of other people who are sick
and having surgery.
Am I absolutely crazy or what?
I know I shouldn’t compare myself to others, but really, though, I am just sad that I feel like my doctors aren’t concerned about how this illness is affecting my whole life and that it seems to be getting progressively worse. Maybe that’s unfair to say, but it’s how I feel.
I mean yes, they’ve finally run some tests and tried medications, but nothing has made a difference in how I feel. There has been no improvement or relief thus far. Not everything is being documented in my medical records, according to the notes I am perfectly fine (just like my blood work). When I do get abnormal tests, they are blown off as insignificant. How can I not be sad?
I had to put my rabbits up for adoption (still searching for a home) because I can’t clean their cages adequately anymore. My hands are so raw from all the rashes, they hurt to hold anything (even typing on the computer causes pain). My joints are so stiff and I’m too weak to carry the giant cages outside to the trash. I feel like I am falling apart.
All I want is to feel better. I’m willing to do or try anything to have one day of comfort. I just keep feeling worse each day that goes by, but no one besides me seems concerned about this. I’m so sick every time I eat. The pain, especially tonight, is so horrible it HURTS to breath. With every inhale I take I feel like I am going to throw up. I’ve only eaten a handful of tortilla chips today because nothing else will go down. How is this ok? or normal?
Must just be in my head then, right?
I’ve tried to take my mind off my sadness by attempting the tricks the cardiologist recommended to help with the POTS, through water and salt loading (drinking tons of fluids and eating/drinking large amounts of sodium), and low-grade exercise. So far, I haven’t noticed much a difference, but that could be due to the fact that my stomach doesn’t seem to want to cooperate with either food or water intake these last few days. I’ve also been “running” on the elliptical for about 15 minutes a day. Even though I am not “pushing myself” too hard, my heart rate exceeds 200 b.p.m in less than 5 minutes. Shortly after, the pre-syncope comes and I have to lay on the floor until my heart rate goes back down. Today, I decided to check my blood pressure after working out. I waited until I had sat for 10 minutes or so, and my blood pressure read 28/26, with a heart rate of 135. I’m pretty sure I should be dead, according to the chart. And yes, I ran it twice because I thought it was an error. I am not sure how I was upright then, but definitely I feel the effects now.
I am not sure if I should keep going with it or wait until my cardio tests come back. I did finally get an appointment with my primary care physician for tomorrow to get another referral to vascular surgery. After three days of calling and getting connected to the answering machine (that has been full since Friday – and yes, it was the voicemail of no return as well), so I drove down to the office to make an appointment. Yes, this is absolutely ridiculous, but at least I finally have an appointment. More testing on Wednesday in the hospital. On the bright side, at least some of the doctors are still trying. I’m just so tired at this point, I”m ready for this all to be over, but it doesn’t look like that will be the case anytime soon.
I’m sorry for the depressing post, but I just needed to get this all out of my head.
Living with a chronic illness isn’t always about the fight to be strong.
Or motivating others.
Sometimes the hardest part of the fight is just getting through the dark times.
The times you’re in so much pain it hurts to breathe or even cry.
Luckily, these feelings don’t last forever…
“Hang on, when the water is rising
Hang on, when the waves are crashing
Hang on, just don’t ever let go…” (Plumb)
The highs and lows of chronic illness are overwhelming. One minute I am strong and powerful, feeling like I can take on the world. The next, I feel like my world is falling apart all around me. Hour by hour and even day by day, life changes so drastically: I’m tired, I feel good enough, I am violently sick… I’m happy to be alive, I’m sad to live this life, or I’m numb to my feelings. I realized, after the emotional train-wreck that was my day was today, that being sick reminds me of how life was shortly after my mother died… I am stuck and lost within the five stages of grief…
The Five Stages of Grief in Chronic Illness:
“It’ just a cold, it’s nothing.”
“There’s nothing wrong with me.”
“The doctor’s have no idea what they’re talking about.”
“I’m fine, everything is fine.”
“This can’t be happening to me.”
“It’s not getting worse, I promise.”
“Life isn’t fair!”
“I hate this!”
“I’m sick and tired of being sick and tired.”
“I don’t want to do this anymore.”
“Maybe if I do better…”
“God, if you make this go away I promise to…”
“If I keep doing good things, maybe my luck will turn around.”
“I promise I’ll try harder…”
“If only I had kept searching for answers…”
“Maybe I can talk to my doctor…”
“What am I going to do with my life?”
“What’s the point?”
“Life isn’t worth living anymore.”
“How am I going to afford to live? Or my medical bills?”
“I can’t do this anymore.”
“I can choose to give up or I can choose to fight.”
“My illness doesn’t define me.”
“I choose to keep going, despite my illness.”
“I have a greater purpose.”
“I will raise awareness to my disease.”
And today I felt all of these.
“I can’t believe this happening, not again…”
“I hate being sick. I hate this life. I hate not having answers. I hate the unknown.
I hate, I hate, I hate…”
“I need to talk to the doctor, it’s the only way…”
“I can’t do this anymore…”
“I have no choice BUT to keep moving forward.”
I Will Stay Positive…Maybe.
I grieve for what I have lost due to my illness. And what I won’t have in the future, either.
But mostly, I grieve for the loss of myself.
For all that I was and could have been.
What My Chronic Illness Has Robbed Me Of:
- My Dreams:
- I wanted to do so much with my life. I was set to have a bright future.With all I manage regarding my health, I can only imagine the amazing things I could have accomplished by now. Imagine if I put all my energy into bettering my life, where I’d be?
- Instead, I balance:
- Doctor’s appointments and medical testing, sometimes every day of the week and multiple appointments in the same day.
- My Symptoms.
- Medical Records.
- Scheduling and coordination of care.
- There’s no big house with a white picket fence in my near future. Maybe not ever. Chronic illness is too unpredictable for such a big commitment.
- Traveling the world.
- My Career:
- I’ve always worked hard, been an “above expectations” employee… continuing to learn, grow, and advance in every job, even when I started getting sick. But then it got worse…
- I’ve had to change my career goals so many times, I feel like I am back in school… What do you want to be when you grow up? I Don’t Know!”
- Marine Biology?
- Real Estate?
- Veterinary Medicine?
- Health? -nope
- Property & Casualty? -not sure anymore?
- Marine Biology?
- What’s next?
- Veterinary Forensics?
- Forensic Psychology?
- Health Psychology?
- My current job seems like they’re finally fed up with me. I can’t do disability because I can’t PROVE how sick I am.
- My Ability To Do The Things I Love:
- I had to quit competitive swimming.
- and competitive cheerleading.
- and roller derby.
- and dance.
- and surfing (when I was in FL).
- I can no longer go on hikes or go camping.
- Go to concerts and shows.
- Set design/horror make-up/act in haunted houses and productions.
- Go on long drives, exploring new places.
- Volunteer with animal rescue groups.
- Ghost hunting (don’t judge me…)
- I had to quit competitive swimming.
- My Appearance:
- My hair keeps falling out.
- I’m not “toned” because I can’t exercise like I used to.
- Despite that I hardly eat, I often gain weight quickly. Then I lose it. Then I have stretch marks from the constant changing in my body.
- My body is plagued with rashes and sores.
- I can’t wear makeup most days because of how sensitive my skin has become.
- I’ve lost pigment on my back, which is now also starting to happen on my chest, stomach, and arms.
- I have giant, dark bags under my eyes… always….
- Mostly, my confidence. And my smile.
My Relationships with Others:
- My husband.
- My family members.
- My friends.
- Some days, I feel like I can’t even relate to most people anymore.
- I feel awkward and different.
- I feel jealousy.
- I feel disappointment.
- My Faith:
- in the health care system.
- in people.
- in medicine.
- in myself.
- in God.
I grieve often for all the loss in myself.
For what once was or could be.
It’s too easy to remember all the things that are gone.
That illness has taken away from us.
I wish I had appreciated and loved myself more.
That I had done more, lived more.
So many regrets….
What My Chronic Illness Has Given Me:
- Strength and the ability to keep going, no matter how frustrated I get.
- A great deal of medical knowledge I would have never gotten otherwise.
- The ability to understand what it’s like to hurt, whether mentally, physically, or emotionally.
- To feel and understand the struggle of others. AND the WANT to know other people’s struggles.
- To draw awareness to the undiagnosed, the chronically ill, the invisible…
- A drive to never stop searching for answers. In every area of my life.
- Patience. Maybe not so much in wanting a diagnosis, but in everyday life. Like doctors offices.
- Appreciation of those who stuck around and took the time to understand what it’s like to be sick.
- The understanding that I can’t control everything, including my own life.
- That knowledge that change, no matter how hard, can lead to good things.
- Love by so many people.
- Friendship and understanding from other’s also going through a similar journey.
- The ability to cry, smile, scream, laugh, and sigh… all within one conversation. Or blog post.
But the biggest thing I learned is that there are so many ups and downs in chronic illness.
And if I hate how things are today, tomorrow is always a new day.
My future is not set in stone, and although I can’t make plans,
I still have the option to live this life how I choose.
Hopefully find a diagnosis.
And make a difference in this life.
Tonight I cry, but maybe there will be peace tomorrow.
There is nothing more frustrating than to be sick everyday with no answers.
Spending all your “free time” in hospitals and medical clinics.
Test after test, each one giving you hope that you’ll find answers.
To give reason for the suffering. For validation. For purpose behind the pain.
Only to be left disappointed and with more questions than before.
Last week I had my last round of scheduled medical testing for my stomach. I was scheduled for a ultrasound on my gallbladder, impedance and pH study, and a gastric emptying study. It’s hard not to have expectations going in to these tests. I’ve spent so many years researching, studying, and living with my illness. I always THINK I know what the outcome is going to be, but I should know better by now that things are never what they seem (and maybe even more so when you’ve gone this long without a diagnosis). I thought for sure, there is no way that my gastric emptying test would come back normal. I did expect minimal results on the other two, but with all the dysfunction I have with my stomach, I truly believed it was absolutely impossible that this would be just another “within normal limits” result.
- It takes weeks for anything to come out my stomach.
- I can feel the food and where it is in my digestive track as soon as it is swallowed.
- I get severe pain and constipation.
- My food comes out the same way it goes in.
- I won’t go to the bathroom for weeks at a time.
- I feel full after only a few bites.
- I can’t eat and drink at the same time due to filling up too fast.
- I am ALWAYS, without end, nauseated.
- When I do eat, I am bloated for days at a time.
- Most days I feel no hunger at all.
I was convinced that I had gastroparesis. In fact, my GI doctor thought so too, especially after I wasn’t cleared out after my colonoscopy. Now, I wasn’t whole-heartedly thinking that gastroparesis would be my DIAGNOSIS or even the cause of ALL my symptoms, but I thought it was a bi-product or complication of something else.
The gastric emptying test itself takes four long hours and is basically a game of hurry up and wait. We arrive at the hospital early in the morning. You’re not allowed to eat or drink anything after midnight the night before. Usually for the test, they have you eat eggs with radioactive materials as the contrast, two pieces of toast with jelly (evidently the sugar in the jelly is the key to moving the digestive track – who would have thought) and a full glass of water, all in under 10 minutes. Well, since I have an allergy to eggs, I got to do it with plain, sugar-free oatmeal, toast and jelly, and a small glass of water. It’s not that it tasted bad, per say, but it was early and that was the most I had eaten in a long time in one sitting. I could tell the technician was slightly impatient with how long it was taking me to get it down, but I was trying the best that I could and I felt like I was plowing through it (even though I wasn’t). After the 15 minute time mark, she gave up and told me the half a cup of oatmeal and single piece of toast I choked down should be enough. It was, which was confirmed after my first round in the machine, which showed small specs of radioactive material high up in my digestive track.
This is what the machine looks like.
These are how the images come out on the computer screen as they are generated from the scan. I followed along with my results at each hour and compared them to a normal scan. Of course, there’s calculations they make along the way, but it gave me a general idea. And at each check point, I could tell that the test was going to be normal.
So needless to say, after the first two hours of the test, I was disappointed. And I still had TWO MORE HOURS to go.
You are literally in the machine for 5 minutes and then wait to be scanned again in another hour. Wait. Wait. Wait. You’re mind is going crazy. It’s a long test, especially when you feel like it was going to be another waste of time. And I didn’t have any coffee, so I was getting grumpy.
But WHAT IF something happens at the end? I can’t give up yet…
I knew what I would hear when they called back with results. I hoped maybe my attempt at reading my own radiology would be wrong, that my doctor would SEE something abnormal that I didn’t catch along the way…
Again, I should know better. Oh well. I’ll add this test to my long pile of normal results. And wouldn’t you know, I have finally been able to eat this week because of the prednisone i was given for the anaphylaxis, but haven’t had a bowel movement since my test. But my stomach is emptying normally…. *smh* Why didn’t this happen LAST week, when I was testing.
It’s sad when you pray to have abnormal results, but that’s life when you are undiagnosed.
Since April, I have had the following tests for my abdominal pain:
- CT Abdomen/Pelvis with and without contrast
- Upper Endoscopy
- Tailored Barium Swallow
The only test that came back abnormal was the CT scan. It’s just frustrating being so sick but your tests keep telling you that everything is normal. I’m sorry, this is NOT normal, despite what the tests say.
You almost become numb to the all the testing. It’s not they’re enjoyable by any means, especially when you’re doing tests on your GI track. Almost every GI tests involves eating/drinking some disgusting type of contrast material, you starve yourself for days preparing for the test, you’re exposed to an ungodly amount of radiation, and they can make you sick for days after. And more times than not, with abdominal pain being one of the hardest chronic problems to diagnose, you go through all of this for no reason. If anyone says they enjoy diagnostic testing, then they are straight up lying to you. But you do it, because you have hope.
It’s always on my mind as to when the doctor will decide to give up and stop looking for answers. I’m lucky I finally found a doctor who has wanted to continue the search for a diagnosis, when all the other doctors have given up. But I know that there will come a day when she will say, “Well we tried our best, everything is normal. Go about you life”… But wait… I’m still sick…
Seeing as all my symptoms started with the abdominal pain and it causes the majority of dysfunction in my life, I have always centered my “theories” around diagnosis being related to that. But as more tests are done and I begin to connect some more dots from the tests that have actually come back abnormal, I am starting to believe that my stomach and digestive system is not actually the problem at all. Especially with all the other random symptoms that keep rearing their ugly faces every time I turn around. It’s made me start looking into other body systems. I swear, with all the time I’ve spent researching and studying, I should have earned a medical degree by now.
I know I should stop trying to diagnose myself, but how else am I going to find an answer? No doctor is going to, or even has the time to, do this kind of research themselves. If it wasn’t for the time I spend on my online medical degree, then I wouldn’t even be this far. I found all my specialists myself. I find the research studies backing the connections and symptoms. I look for differential diagnoses. If I had left it up to my primary care doctor, I’d be waiving the white flag, accepting that I am a medical mystery, and go about life in pain until I die. That’s just not good enough, I’m sorry.
Most people in the chronic illness community identify the zebra to those who have been diagnosed with EDS, but really, it’s a symbol for all of us who have weird and complicated symptoms that can’t be easily explained or diagnosed. It’s easier to disregard the symptoms than find the cause of them. And we are left undiagnosed.
That’s why these tests are import. Why we have to keep trying to find an answer. Get validation. Prove to everyone that this illness is not in our heads, that this is a real problem that deserves to be taken seriously. I DESERVE TO BE TAKEN SERIOUSLY.
So I’ll keep collecting my “normal” tests until they have literally ruled out everything possible.