What do you do when you experience a myriad of symptoms but struggle to find a diagnosis? This is the boat I have found myself in for over a year. Some days the seas are calm, and I feel healthy. Other days the waters are choppy, and flare-ups occur. At times it feels that the hardest part is having no diagnosis – no set course to navigate back to land, to a body that isn’t constantly under attack by one wave of symptoms or another.
The Ever-Elusive Diagnosis
In 2018 I hoped to solve the mystery of my symptoms. I wanted a concrete diagnosis so that I could better research a path back to wellness. I had test after test and saw specialist after specialist. But I rarely received answers that would ease my worries and give me confidence for the future.
That’s not to say that everything was fruitless. After months of battling the sudden onset of severe acne near my mouth, my dermatologist took only a moment to diagnose the issue as perioral dermatitis. When I sought answers for my purple toes and increase of blood vessels in my left foot, my family doctor detected a heart murmur. A follow-up echo cardiogram confirmed mitral-valve prolapse. Multiple flare-ups and thus multiple trips to three different gynecologists finally resulted in the biopsy and diagnosis of sebaceous cysts.
But I still don’t know why my toes and the top of my left foot turn purple when I am standing or cold. My cardiologist said that my heart is not the cause. Multiple tests ordered by my vascular doctor have yet to diagnose my symptoms.
And there is an odd pain that I often feel on the left side of my abdomen. Both the endoscopy and colonoscopy that I had last fall revealed no known cause. A recent trip to the ER for severe pain in that region and in my back ruled out kidney stones. Though my appendix showed inflammation, the doctors could not diagnose my symptoms.
Update: On February 28th, 2019, I was diagnosed with May-Thurner Syndrome. You can read more about that in my follow-up post: Finally a Diagnosis: May-Thurner Syndrome.
Do Diagnoses Help?
When we experience symptoms, we all want to know what caused them. Sometimes a diagnosis reveals a root cause that, when treated, resolves the issue. But often a diagnosis only serves to give a name to the symptoms without providing the underlying reason for those symptoms.
Was I relieved that my dermatologist could diagnose my issue of perioral dermatitis? Of course! But she couldn’t tell me why I was suddenly plagued by acne. Instead I received a script for a month-long course of antibiotics which, after further research, I chose not to fill.
Am I glad to know that my gynecological flare-ups are only harmless sebaceous cysts that can be removed if needed? Yes! But I still don’t know why mine are painful when most women who have them never notice them. I suspect that a food intolerance may be the cause, but I am still in the process of confirming that with an elimination diet.
If a diagnosis merely gives a name to my symptoms but offers no explanation for the root cause, have I gained anything by that diagnosis? Even if doctors can diagnose my other health issues, will there be steps that I can take to not only treat the symptoms but to fix the causes?
What to Do While Awaiting a Diagnosis
Nourish Your Body
One of the major steps I’ve taken to combat my symptoms is to seek better nourishment for my body. I have chosen to do an elimination diet to attempt to pinpoint any foods that may be causing increased inflammation. When I eat, I focus on consuming nutritious food rather than counting calories.
Last spring I saw a doctor who analyzed my blood work to reveal my vitamin and mineral deficiencies. Since then I have gone from taking zero supplements to taking several a day. Testing is not cheap. Neither are supplements. But I have confidence that providing the nutrients my body needs will help me regain my health.
Reduce Stress
We all know we need less stress in our lives, but actually reducing our levels of stress takes being intentional. In my life, this looks like cooking the same set of meals on a regular basis and frequently serving leftovers so that I don’t have to worry about what’s for dinner. In other areas it looks like setting priorities for my time so that I have enough margin in my days and weeks for rest.
Find Support
Let others know that, while you may appear healthy on the outside, you often don’t feel all that great. Not only may they be able to pray for you and help you in times of need, but they may have had similar experiences and can provide advice and resources that could benefit you.
Don’t Give Up
It’s hard to go to appointment after appointment and do test after test without finding any concrete answers. But medical advancements are made on a regular basis, and new information about achieving better health is constantly on the forefront. In the meantime, don’t give up. Focus on nourishing your body, reducing stress, and finding others who can support you on your journey to better health.
Did you enjoy this post?
Let’s keep in touch.
Subscribe | Follow on Pinterest
Jolynn
Wow! I had no idea you have had so many tests and everything you talked about. So sorry you have had all these issues going on. I am sure trying to homeschool has been more of a challenge but am happy you are trying to de-stress were you can. Will put you on my prayer list and ask God to heal you. You are an amazing wife and mom Rebecca and you will get through this. I enjoy reading your blog.
Rebecca
Thank you for your encouragement. Last year when I made the rounds with so many doctors, trying to get babysitting while not becoming a burden on the same people over and over for help was definitely stressful – that and not often being told any information that helped figure out the causes of my symptoms. My cardiologist had said that he could tell me what I didn’t have but wasn’t sure he could tell me what I did have. I did not expect that statement, given so early in my journey, would haunt me at so many other appointments too.
Sarah R.
We often time look for these labels and sometimes they’re helpful other times they’re just labels. I’m glad that you already have that insight. I was diagnosed with fibromyalgia 9 years ago and after many doctors and specialist there was nothing that conventional medicine could do to help. In fact, I was told that I’d always be in pain and that there was no cure. But God had other plans…. After suffering a little while (1 Peter 5:10) he showed me the way to restoration. I clung to that verse (and many others) and one day had the faith in it’s truth over my life. I won’t go through the long journey and all of the details here, but I’ve been pain free for 5 years now! Though I’m still battling other health issues, I’m no longer disabled from pain. God restores! I pray that he will restore you as well, with or without answers, and that he would give you faith to hold you through the uncertainty.
Rebecca
Sarah, what a wonderful testimony! Thank you so much for sharing part of your story and for the uplifting Bible verse and prayers of restoration.
Faith
Rebecca, thank you for sharing so much. Interesting that I have mitro-valve prolapse and I think Gay Gay did too. I am sorry that you have had such a difficult time and will continue to pray for you. For our church retreat this year we chose
Be still and know that I am God. Psalm 46:10
Be still and know that God has you in the palm of his hand.
Rebecca
Thanks, Faith. It’s been quite a journey trying to figure out why I have odd symptoms at times. I am glad that I have changed my eating habits to focus on nutrition. I know that God will see me through this, and I thank you for your encouragement.