Finally Some Answers: My Journey to Duke Health

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It’s been a long, hard road of pain and worry. In my 27 years of life, I’ve had 15 surgeries. I wouldn’t say that I’ve had major problems, though. I have never had anything life-threatening, but I have had problem after problem most of my life. All of those little things add up and can really take a toll on your body. I’m going to give you a little background before I get into my actual trip so you can understand everything a little better.

In my early teenage years, I was diagnosed with Temporomandibular Joint Syndrome (TMJ). My jaws pop really loudly and lock up sometimes. I quit chewing gum several years ago, because anything I do excessively with my jaw only makes it worse. This was really my first sign of any joint problems aside from my joints always popping and being flexible, which I always thought was normal.

When I was 17 years old, I started having the worst back pain. I saw a few specialists, but was never diagnosed with anything. I was given huge shots near my spine to block the pain, pain medications, and chiropractic care.

Aside from the chiropractic care, and the pain meds helping me sleep, nothing else worked. The pain blockers and shots I was given only temporarily relieved the pain, so after two procedures with those, I stopped getting them. They really hurt, had several risks, and were very expensive.

As if the back pain wasn’t enough, I started getting pains in my chest along with muscle spasms around my ribs, and it hurt to take deep breaths. I also had a slightly abnormal EKG. If there was a Price is Right for doctor referrals, I would be the winner every time. Can you hear Bob Barker asking, “Who wants a turn to spin the wheel of health? Alright Brittany, Come onnnnn dowwwwwn!” I can see Vanna White showing me my prize right now. Unfortunately, it’s not a new car or a trip to the Caribbean. You guessed it. It’s a trip to the Cardiologist!

Thankfully, my heart is healthy and wasn’t the problem. After ruling that out, I was told that I more than likely have Costochondritis, which is inflammation of the cartilage in the rib cage. It causes pain and tenderness, and usually flares up when I am stressed. Not only does it hurt sometimes when I take a deep breath, but my back will even pop while taking a deep breath. Weird, right?

When I tell you that I can’t even go for a regular check up without something more being wrong, I’m not exaggerating. I went to the eye doctor for a check up thinking I would only leave with reading glasses. Wrong. I left with reading glasses and an eye surgery. Can you believe the nerve? No really, it was my nerve. I was referred to another Optometrist and was diagnosed with Fourth Cranial Nerve Palsy. It sounds scarier than it really is, but still, another surgery. Surgery fixed the problem, and my eyes are fine now, other than I can’t see the greatest. Just ask Dustin. We were driving down the road the other day and I started slowing down. I thought there was a person in the road. It was a garbage can. A garbage can, y’all! Don’t worry, I wear glasses now.

Fast forward to age 20, which is when my joint pain started to worsen. I noticed my hips started popping really badly. My joints have always popped, but I never thought much about it until then. It was so bad, you could hear my hip pop when I would walk or bend my leg a certain way.

I was sent to yet another specialist, who diagnosed me with Coxa Saltans, otherwise known as Snapping Hip Syndrome. Snapping Hip Syndrome is a condition where you feel a snapping sensation or hear a popping sound in your hip when you do certain activities like walking, bending, or swinging your leg around to step over something. He also referred me to another specialist to further look into my joint problems.

At this point, I had already seen a Chiropractor, a Pain Doctor, an Orthopedic Doctor, an OBGYN (my back pain would worsen during my period), a Cardiologist, and now I was being sent to a Rheumatologist. At the time, my pain was the worst in my back, hips, knees, elbows, and my wrists.

You know you have a lot going on when the Rheumatologist tells you that he wishes he had a student with him, because it would be a great learning experience for them. The Rheumatologist I was sent to diagnosed me with Benign Joint Hypermobility Syndrome (BJHS), Restless Leg Syndrome (RLS), and tendinitis in my wrists.

Hypermobility Syndrome is a condition where your joints move beyond the normal range of motion and it causes joint pain. Restless Leg Syndrome or RLS, is a condition that causes an uncontrollable urge to move your legs, usually at nighttime. Tendinitis is a condition where the tissue connecting muscle to bone becomes inflamed.

While other people my age were going out and having fun, I was just trying to walk around without sounding like a bag of popcorn. I know what you’re thinking…is this girl 27 or 72? I feel like I’m closer to 72. If you ask me, I’m still pretty talented. I mean, my knees can tell you what the weather is. Is that skill or what?

While I was in X-ray school, my body was so stressed out, that I got shingles. Yes, shingles. Most people who get shingles are over the age of 50. You think that’s bad? Not even one year later, I got shingles for the second time. I honestly don’t know what I did to deserve that, because if you’ve never had shingles, they are painful. I still have nerve damage from the first time I had them, because it was so bad.

Dustin and I got married when I was 23. You know it was true love, because the man knew I had a lot of issues. My Dad told him he couldn’t give me back once we got married (such a funny man). I think he was just happy to get me off of his medical insurance (I’m joking…sort of).

For the first 5 months of our marriage, I stayed sick. I was so miserable. I basically lived on the couch and the bathroom floor. Such a nice way to start out a marriage, right? After being referred to a Gastroenterologist, we found out my gallbladder wasn’t working at all. Literally, I would eat, and my food would barely move through my system, causing me to become extremely nauseous and sick. If you’re wondering why it took 5 months to figure that out, it’s because my pain was on my left side. Your gallbladder is located on your right side. It’s rare to have pain on the opposite side, but mine was, so they were checking everything else but my gallbladder.

After having so many surgeries, you kind of get used to the process, but you’re never any less nervous. Although, I have mastered the whole, “I’m fine, this doesn’t bother me. Let’s do this,” facade. The truth is, I’m so nervous each time, it makes me want to throw up, but not for why you think. It’s not really the surgery that scares me, but the recovery. Let’s be honest, the surgery is the easy part. You have no idea what’s going on, and it’s over before you even know it started.

I’ve never done well with anesthesia. It makes me so sick, and I know that it’s going to happen every single time. Puking your guts up while doubled over in your front yard at 3am after a trip to the ER (on the same day you had surgery), with 4 cuts across your stomach, is not fun. I thought I was going to die that night, and if you ask Dustin, he will tell you he has never been more worried about me than he was that night.

That was just in the first year of our marriage. The 2nd year brought our little bundle of joy. It was a rough pregnancy on my body, because of my joint problems. So much so, that I had to start seeing a Chiropractor again while I was pregnant. My hips would slide out of place and they were always hurting. When it came time to give birth, I couldn’t give birth naturally and ended up having an emergency c-section. I was in labor all night and most of day. I was already dilated to a 9, but my pelvis wouldn’t allow Austin to come out. Talk about miserable. I was very sick then, too.

Not long after I gave birth to Austin, I started having problems with my head. I’ve always suffered from headaches, but this time I was getting a funny feeling in my head and I would get so dizzy. You’re probably tired of reading this, but I got a referral to the Neurologist. They diagnosed me with getting migraines and that was that.

Later, I started to have problems with my digestive tract. I went back to the Gastroenterologist, and was diagnosed with Irritable Bowel Syndrome (IBS). It was actually a blessing in disguise that I went, because I had a colonoscopy to check for Crohn’s disease before they diagnosed me with IBS. I didn’t have Crohn’s, but they did find a polyp. They sent it off for testing, and he told me if they didn’t catch it, I could have had full blown colon cancer 5-10 years down the road. Most people don’t start having colonoscopies done until they are 50 years old. I was half that age at the time, and if it wasn’t for my stomach issues, I would have never even gone to the doctor and had that procedure done. The Lord really does work in mysterious ways.

In our 3rd year of marriage, Dustin started out the year by having his gallbladder removed. I think he just wanted to be like me. A few months later, I had to have another surgery, and was diagnosed with Endometriosis. Three months after having the endometriosis “removed,” it came back. If you don’t know what Endometriosis is, you can read my other post about it here.

After I was diagnosed with that, I was referred to yet another Rheumatologist. My blood work I had done was showing positive for an auto-immune disorder. It always has, but no one has ever been able to diagnose me with anything.

For the last year and a half, I have had test after test and been to the doctor numerous times. My symptoms started to progressively worsen and my quality of life took a huge hit. I was diagnosed with Arthritis in my lower back, which explained some of my back pain, but not the pain in the rest of my body and the major fatigue and loss of energy. Some days I wake up and I’m barely even able to walk. My whole body will feel bruised all over and tender to the touch. Even wearing tight clothing makes my body hurt sometimes.

I remember waking up one night last December at 3am. Every part of my body was screaming in pain and I couldn’t move without crying. I was up the rest of the night until Dustin left around 6am for work. He almost called out of work, because he was so worried about me. When I woke up a couple of hours later, and stepped onto my feet, I immediately felt hot tears streaming down my face. The bottoms of my feet felt bruised all over and it hurt to walk. I spent the entire day on the couch and only got up to see about Austin or if I absolutely had to. It was a miserable day to say the least.

Now we are in our 4th year of marriage, and boy did I start this year off with a bang. I had a cyst rupture on my ovary, and then I got sick with a cold a few weeks after that. Just as I was on the mend, I got shingles for the THIRD time. Then just as I started to heal from that, I started breaking out in hives from head-to-toe. Miserable, itchy, burning, hot to the touch, swelling hives. They would pop up in one spot, go away 20-30 minutes later, and then pop up in a new place on my body.

They weren’t just any kind of hives, though. We thought it was an allergic reaction, but after shots and a lot of anti-histamines, they didn’t go away. Wherever I touched, or applied pressure, they popped up. It was one of the most miserable things I’ve ever experienced in my life. Not even Benadryl could touch it.

This is what got me my referral to Duke University. Well, the hives and a little advocating on my part. My primary doctor suggested it, but it still took some pushing on my part. I remember her telling me that no one around here would probably know what was causing it and it would take longer to find out. She said it would probably be best if I went straight to Duke if my current Rheumatologist thought it was best.

I came home and called my Rheumatologist and they said I should go if that’s what my doctor wanted. I called my doctor’s office back to get the process started for the referral, and they told me they wanted to wait. I needed to come back for some blood work and we would just go from there. When I hung up the phone, I cried. They weren’t little tears either. I called Dustin up at work to let him know that the plan to go to Duke was put on hold. He was furious, and I was beyond upset, because here I was completely miserable and I felt like no one was listening to me once again. The prescription they gave me for the itching helped some, but it also made me very drowsy, which made it hard on me during the day since I have Austin. I was tired of feeling the way I did and wanted answers.

When you’ve had as many symptoms as I have for as long as I have, you start to feel a little crazy when no one can tell you what’s wrong. It’s like everyone thinks you’re exaggerating, but the pain is real. I’ve known this whole time that something was wrong with me, and it makes it so much harder when you feel like no one believes you.

After a couple of weeks of being persistent, I finally got my referral to Duke. They called me to set up the appointment, and their first available appointment wasn’t for a couple of months. I felt defeated again, because all I could think about was me breaking out in hives every day for two more months. I didn’t let it upset me, though. I was mostly just relieved that I got an appointment with a doctor at one of the best research centers, and I had faith everything was going to be okay.

We left for Duke, which was a 7 hour drive. Well, it was longer for us, because we had to stop for gas, food, bathroom breaks, food, bathroom breaks, gas, and more food. Traveling with me is like traveling with a child, okay? I like to eat and I’m not really allowed to drink much.

We made it to Durham, NC and I was exhausted from traveling. Sitting in the car made my body feel stiff and I was already hurting, not to mention nervous about my appointment the next morning. I was so tired and anxious, that it made me feel sick. I was nauseous until we got to my appointment the next day. Everything I’ve ever heard about Duke Health is so true. They were so attentive to me and everyone was very helpful and friendly.

If you know me, you know I like to be prepared and organized. I spent about an hour a couple of days before our trip writing down every single surgery, procedure, symptom, allergy, and medication I have had into my notebook. When the nurse pulled me back and started asking questions, I just handed her my pages (yes, plural), and she entered everything. The doctor came in and did a physical exam. After doing the exam, looking over my notes, labs, tests, and talking everything over with me, he told me exactly what I already knew; I have Fibromyalgia.

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. There are also studies showing that people with Fibromyalgia also have IBS, TMJ, migraines or tension headaches, anxiety, and depression. I have all of those, so it only further confirmed it after having a few more blood tests to rule out other things.

He also told me I definitely have Benign Hypermobility Joint Syndrome, just as I mentioned before. He explained everything to me so that I can now understand it better, and work towards reducing the pain some. Basically, my joints hyperextend past the normal limit that they should. When that happens, my tendons and ligaments are stretching past the point they are meant to, causing me a lot of joint pain. My goal is to strengthen my muscles a little around those tendons and ligaments so that they don’t hurt as bad when stretched passed their limits.

As far as treating the Fibromyalgia, I am trying a new medication and hopefully in time, it will help with the pain. So far, it makes me very tired, but they said that’s normal when you first start taking it. It’s slowly getting better. I’m just taking it one day at a time.

I knew in my gut that I had Fibromyalgia, but every time I brought it up to my doctor’s here, it got ignored. No one listened to me, and made me feel like I was imagining it. It’s not like I wanted to have it. I just wanted to be diagnosed so I could get treatment. Fibromyalgia is not something you can run a test for. It’s something you are diagnosed with after ruling out all other conditions associated with the same symptoms. I’ve had so many tests over the years, and every symptom I had was pointing to Fibromyalgia. I’m so glad I followed my instincts and pushed to get to Duke.

I’ve always been the type of person to sit back and accept things as they are, but this time I had enough and couldn’t live like this any longer. I stood up for myself and advocated for my own health to get a diagnosis. It wasn’t easy, but it was so worth it to finally hear that what I’m feeling is real. The doctor I saw at Duke even told me he was so sorry that I’ve been in pain for this long and he knows it’s been hard on me. We need more doctor’s with compassion and who take the time to listen. My mind feels more at peace, because I’m not constantly wondering what is going on with me anymore.

As for the hives, he said there are several different types and mine could be triggered by stress. I had a blood test for a certain type that came back negative. For now, I will take extra anti-histamines when I break out (which is not as often now–thank the Lord), and if it gets bad again, I may need to get a skin biopsy to further diagnose it.

I’m still not feeling the greatest, but at least now I’m on the right track to hopefully feeling better. It’s been hard for me, but also for Dustin and Austin as well. Austin is too young to understand why Mama is always so tired and doesn’t feel well. He also doesn’t understand why I can’t be tugged on and rolled on all the time, and it breaks my heart.

He’s so energetic and it’s all I can do to keep up with him. Even getting out of the house to do something with him, takes every ounce of energy I have and it’s tough. We don’t always get to go out and do fun things, because it’s just hard. I want to feel better not only for myself, but also for him and his dad. I love my family and want to be the best that I can be for them. As hard as Dustin works, he also understands how hard it is on me and he knows I stay exhausted. He was already a great dad, but in the last year he has really stepped up to help with Austin more. I love him even more for it.

If you’re struggling with health issues, I want you to know that you are validated to feel the way that you do. Not everyone understands, and that’s okay. It’s hard for someone to understand when they haven’t experienced it for themselves.

Some people may think it’s a small problem, but when it’s you who is going through the problem, it’s a big deal. You’re the one it’s affecting and even the smallest things can be difficult at times, especially when you are facing it day after day. You need to know that you’re not alone. There’s someone out there going through the same thing. If you’re looking for answers, trust your gut and have faith. If I didn’t do those things, I would still be sitting here wondering and worrying.

Nothing can happen without God’s permission, and God will not allow a difficulty unless He has a divine purpose for it.

To be honest, if I never had any of these problems, I don’t know that I would even have this blog. My pain has driven me to do something more; to be something more. I’m not broken. I’ve just had several setbacks that have tried to slow me down from reaching my goals. The enemy knows that God has big plans for me. That’s why he has done everything he can to wipe me out. I have a purpose and I plan on continuing to be what God created me to be.

I’ve spent the last several years of my life feeling sick. These last few years have been the hardest, but I’ve gotten to a point where I’m sick and tired of feeling sick and tired. I’m so thankful that I was able to get a diagnosis. I know it’s nothing life-threatening, but it’s still something that causes me pain. I’m choosing to believe there is purpose in my pain. I believe that God is going to use my pain and struggle to help someone else. I don’t know if it will be through this blog or some other way, but I’m ready to be used for His glory.

God has a purpose for your pain, a reason for your struggle, and a reward for your faithfulness. Trust in Him and never give up.

***Disclaimer: These are my own personal experiences. If you are having symptoms or have concerns about your own health, please consult with your own Physician.***

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