Dealing with a New Chronic Illness Diagnosis

Multi-colored background with an image of a carotid artery with FMD; the title text is in dark blue font: Dealing with a New Diagnosis: Fibromuscular Dysplasia Below the title is the website painfullyliving.com and with the waterlily above it.

When I received the diagnosis of Fibromyalgia in November of 2018, I was actually relieved. It helped to explain the issues I was having and gave me, then, a pathway for learning to manage it. Also, it ruled out life-threatening diseases, such as cancer through all the testing needed to rule out everything else. While Fibromyalgia is a life-changer, it does not in itself cause damage to the body and is not considered fatal. This new diagnosis of a rare disease that is damaging the lining of my arteries and can lead to stroke and heart attacks is not one that I was prepared for when I visited my ENT about the whooshing sound I’ve had in my ears for the last 15 or so years.

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1st Specialist Visit: Otolaryngologist (Ear Nose Throat Doctor)

I had asked my primary care physician (PCP) if he would refer me to an ENT to check into the bruit (a whooshing or heartbeat sound) that I constantly have playing in my ears. Over the past 15+ years, I have mentioned this issue to my doctors, but after listening to the back of my neck, they just shrugged and really didn’t say much about it. After finding that it had a name (through discussion in one of the Fibromyalgia groups I belong to), I looked up what may cause Pulsatile Tinnitus. And while the reading I did say that it was pretty common, it also said it could have more serious reasons behind it: an aneurysm, increased pressure in the brain, and hardening of the arteries, among some other scary things. I was going out of the mentality of “just checking”, never thinking it would be anything of issue.

My visit with the ENT was difficult for me. I think, just me guessing here, that he thought I wanted him to stop the annoying sound that has kept rhythm to my life day in and day out for so long. After checking my hearing and other possible issues, he met with me to tell me the results. “You hear like you’re a teenager and there are no other problems that would be the cause of the pulsatile tinnitus.” He then, read my chart closer, and brought up Fibromyalgia. In the course of our talk, he brought up going for therapy three times. Of course, he had no idea that I have (and believe it to be helpful for people living with chronic pain and/or chronic illness), but the way he said it made me feel silly for coming to see him about the issue in the first place. As I prepared to leave, he did say that he was going to recommend I have a CAT scan with contrast of my head, “Just to rule out all issues.”

I’ve gotten quite hesitant about any medical procedures, so after setting up the appointment, I actually messaged him and said, “If you really don’t think that this is anything to be concerned about, I would rather not have the CAT scan.” His reply is that he thought it would be best if I went through with it so that we could be sure. And so, I did.

A few days later, I received a phone call from him. He let me know that the imaging showed that I had Fibromuscular Dysplasia (FMD) in my carotid arteries and that he had let my PCP know who would most likely follow up with some referrals to get it checked into. Of course, that led me to get on the computer to find out what FMD was. I quickly found some very helpful resources, but also found out that this was not only a rare disease but one that was life-threatening.

Here’s a very helpful explanation of FMD:

Fibromuscular Dysplasia, commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur.  If narrowing or a tear causes a decrease in blood flow through the artery, symptoms may result. Many people with FMD do not have any symptoms or signs on physical examination and are diagnosed by accident during a radiology scan for another problem.

FMDSA Welcome Page

2nd Specialist Visit: Neurosurgeon

My primary care doctor referred me to a neurosurgeon and neurologist, in no particular order. So, when they called, I made the first available appointment for each one. The neurosurgeon was available first, a full two months before the neurologist had an opening. So, I went, not knowing at all what this appointment meant and what it would do for me.

I’m thankful to have found a couple of helpful groups to get more knowledge before going to the appointment, but I wasn’t quite prepared for how he received me. His first question after looking at my chart was, “Why are you seeing me?” Well, I pointed out, my GP made the referrals and he was the first to have an opening (I didn’t know any better). Again, I got the sense that he thought I wanted surgery to eliminate the Pulsatile Tinnitus. Ah no! I don’t want any unesscessary surgery near my brain!

He proceeded to barely check me out or ask me questions. He told me that I definitely had FMD in both of my carotid arteries, but since I have FM, IC, and the Nissen procedure for GERD 15-years ago, there really wasn’t necessary to check to see if I have it elsewhere in my body at this time. I sheepishly agreed with him. Again, I’m not wanting medical tests just to have tests. Not only are they costly but they are scary, especially during the time of the COVID-19 Pandemic. I left with the directions to see the neurologist, who he thought would agree with his thoughts on no further testing needed and to take a daily low dose aspirin (which I had already started the month prior).

A multi-color background with a list of some of the FMD symptoms (Text in white): Bruit/Pulsatile Tinitus
Pain in the neck
Headaches/Dizziness
Stomach pain after eating
High-blood pressure
Stroke/Heart attack due to SCAD  
Many go undiagnosed due to having no symptoms

3rd Specialist Visit: Neurologist

This time I was more prepared with a list of questions and issues I’m having. My main goal was to find out if I have it elsewhere in my body (for monitoring purposes) and find out what preventative measures I need to implement. This doctor did take more time with me and asked quite a few questions. He also did some physical checks having me push up with my arms, move my eyes around, walk in a straight line, etc. He was pretty matter-of-fact, but I felt that he was making sure to check into everything. At the end of our appointment, he noted concern about my fairly sudden increase in my blood pressure which, as he explained, can be a sign that I may have it in my renal (kidney) arteries. And so this coming few weeks, I am having a redo of the initial CAT scan with contrast because he wants to have it from the shoulders up, not of just the head as was done the first time. Then, an MRI of my brain “in case you have a stroke we want to have a baseline”, and an ultrasound of my kidneys to see if I have it there as well. He’s suggested that my PCP refer me to a cardiologist to check into the heart pain I have that is to the left of my sternum (breast level) which I’ve had since I was a teen and have always equated it with my body’s way of showing I’m stressed/anxious. It could be a sign I have it in the arteries of the heart.

I left the appointment knowing that there wasn’t any mistake that I have the beaded form of FMD on both of my carotid arteries, and because of this, I am to continue taking the low dose aspirin every day. However, his parting words ended up making me feel like I had a time bomb in my neck. He told me not to massage it, have a chiropractic adjustment of the neck, put weight on my neck, or move it quickly out of its alignment because I could cause dissection of the artery. What is dissection? A tear!

Multi-colored background with a yellow clipart bomb lit on a tan clipart brain ;under in dark blue font painfullyliving.com with the waterlily logo above it.

My Initial Reaction

In the office, I was calm and matter-of-fact like the doctor. However, once I got into the car with my husband and began to explain what I learned and what I was to do, I began to cry. I could feel the anxiety welling up in me. My neck, which normally has pain in it seemed all of a sudden more prominent. As I told Kelley what the doctor said about taking care of my neck, I really felt panicked. The past two years, I had done pretty much everything he had told me not to do to my neck.

When I was first diagnosed with Fibromyalgia, I had most of my pain in my shoulders and neck area. The summer I spent in physical therapy focused a lot of stretches in that area. I had gone to a chiropractor several times, each time my neck was jerked one way and the other. In yoga, I had extended my neck back and down. I did self-massage directly on my neck with my massage gun, generally on the highest level. All I could think of (and almost viscerally feel) was a ticking (coinciding with the heartbeat in my ears) time bomb ready to cause a stroke or worse.

That was seven days ago. Luckily, I had my EMDR therapy appointment that next morning. I have just started back after the initial pandemic lockdown. Then, some extra support from the Healing Circles group leader, Elaine Merryfield, through her Healing Messages cards she sent me. And on Friday, I had my first health counseling appointment with a fellow Michigander, Sharon Waldrop, who has lived with Fibromyalgia for 20+ years and has recently finished her training for wellness counselor.

In addition, I have done more research and have taken some steps to help me feel a bit more settled about having Fibromuscular Dysplasia. I know it’s a serious issue, but I also know that many live with it well into old age without having any issues. Through an online group, I’ve gotten more questions answered and have even found a doctor in Michigan that specializes in FMD. To my surprise, I was able to get an appointment with him in early January.

I know that dealing with this new diagnosis will be much like the process I went through in accepting and living with Fibromyalgia. I know there will be ups and downs, but overall, I know that I have the tools to continue living my life FULLY despite the disease.

How to Handle a New Diagnosis

  • Learn as much as you can: Finding reliable resources and learning about my illnesses has given me the needed information to impact the handling of my diagnoses. It helps me to have realistic expectations.
  • Take responsibility for your own care. I had always taken doctor’s directions as gospel, but what I have learned from having Fibromyalgia is that doctors aren’t able to know everything. One article I read explained that there are so many diseases/syndromes/illnesses/issues out there that it’s impossible to think one person would know everything about everything- that’s why it’s called practicing medicine. So, I now view my doctor more as a teammate. I sometimes give ideas (through my research) to him/her. I’ve developed trust in them and from them so that I have actually introduced new treatment ideas that they have said they’ll use with future patients who have the same issue.
  • Know your body. Make sure you keep track of symptoms and any other data that would be helpful for deciding treatment options. I do struggle with this one, but I have a few things that I use that have made me be a bit more diligent in keeping records. 1. The app DAILYo is where I keep track of my mood, symptoms, activities, weather, and medication at least one time per day. I can see a variety of reports easily. 2. Google Keep-I keep any questions that come up and even links to research articles to read or share. 3. My Health is an app that I have on my phone; it’s an online system that Spectrum Health care uses to communicate with patients. I can see appointments, message my doctors, order meds, see test results, etc. 4. Fit Bit: Right now I’m mainly monitoring my sleep quality with this.
  • Build a support team. This includes any experts in the area of your diagnosis. I have not only my PCP, but some specialists. I try to keep them all in the same network or at least able to communicate with one another. I also look to online groups who have both medical specialists and those living with the same chronic illness as me. This is probably where I have found the majority of helpful ideas for self-care and treatments that work.
  • Make a plan. My plan involves evolving self-care/treatment protocols. But, a plan won’t work unless it is faithfully followed.
  • Reach out for support. It’s easy to get caught up in wallowing in what isn’t pleasant news. Depression is a common occurrence in those living with chronic illness. For me, I’m seeking therapy and have a monthly meeting with a small support group for encouragement and help with developing healing self-care. I also am open with my husband who has been a major source of comfort. He is understanding; however, he also is great at pushing me to be active and making me laugh when I need it. I’ve also shared how I am with my sister and friends who are quick to give me a hug or want to talk (made a bit more difficult in the area of the Corona Virus). And finally, writing. There’s just something in it that helps me process things.
  • Live as FULLY as you can within the parameters of your chronic illness. Due to FMD, I won’t be skydiving. Never really wanted to anyhow. But I can get out in nature for walks, kayaks, and even X-country skiing. I can play make-believe with my granddaughter. I can have pamper-night with my daughter where we do facials, our nails, and watch JULIE AND THE PHANTOMS. I can create: writing, playing music, and doing crafts. Focusing on what I can’t isn’t helpful; focus on what I can and then go forth living.

Focusing on what I can’t isn’t helpful; focus on what I can and then go forth living.

Dealing with a New Diagnosis-katie Clark

What has helped you to deal with your diagnosis? What have you found to be detrimental? I will be sharing more about my journey with Fibromuscular Dysplasia as time goes on. This week, I have the head/shoulders CT w/contrast.



teal line drawn waterlily with teal lettering of the title and motto

13 thoughts on “Dealing with a New Chronic Illness Diagnosis

  • November 8, 2020 at 7:01 pm
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    Hugs to you, Katie. What a scary situation, but it sounds like you’re handling it the best way you can. I’m sending prayers and healing vibes your way. And I hope your appointment in January will give you some positive results.

    Reply
  • November 9, 2020 at 3:34 pm
    Permalink

    Great advice on handling a new diagnosis. It can be really tough, and we never know how we’re going to react. I’m sorry the doctor was kind of a jerk at first! Thank goodness for the internet and chronic illness groups that help us cope with this things.

    Reply
    • November 9, 2020 at 3:44 pm
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      Yes, I know that I’ve been able to find help and answers so much faster because of these resources.

      Reply
  • November 11, 2020 at 12:04 am
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    Excellent advice for how to handle a new diagnosis and I see that you mentioned the same thing I briefly mentioned to you in a comment elsewhere – how hard I kept it together in the office and how hard I cried as soon as I got out. It’s wonderful that you’ve listed everything out here and that you’ve provided clear guidance that is reassuring and helpful. I’m so sorry you are dealing with this after a great vacation. Take good care, Katie. Always here for you.

    Reply
    • November 11, 2020 at 8:58 am
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      Thank you, Carrie. Yesterday, just after the CT scan, I cried, making the poor young, male nurse really uncomfortable. Tried to pull it together by asking him how he didn’t have foggy glasses while wearing his mask. Hard to explain the emotion in such a brief encounter.

      Reply
  • November 12, 2020 at 5:49 am
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    I am so sorry to hear about this new diagnosis, Katie. And to think You’ve been living with it for so long! 🙁 Message us if you ever need a listening ear. Sending love.

    Reply
    • November 12, 2020 at 11:13 am
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      In a way, it’s comforting that I probably have had it all my life. It means I’ve been functioning okay even so. I’m glad though we found it now so that we can monitor.

      Reply
  • November 16, 2020 at 3:04 am
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    This must feel so scary but I am glad your PCP encouraged the CT scan and you’ve come this far. Big hug and loads of strength to you Katie. I’m sure this isn’t easy but thank you for sharing this with us.

    Also… While reading this post of yours, it suddenly struck me – the next time I am to go for an appointment that throws major news or a new diagnosis, I will hear the doctor, ask what comes to mind, and then ask if I can wait outside for 20 minutes or so, gather my thoughts, note down if any other questions come to mind and then go back in to ask those. Because this is all, like you said, overwhelming. And some times, these appointments can feel like a blur. If only we can slow them down a bit by giving ourselves some space to think and go back in, it would help rather than go home and wait for the next time.

    I hope you will keep us updated on your journey with FMD – wishing you all the love.

    Reply
  • November 16, 2020 at 9:57 am
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    Katie – thank you so much for sharing your experience with us so fully! Thank you for educating me on Fibromuscular dysplasia! When I hear FMD I think ‘Functional Movement Disorder’, as that’s the subcategory of FND that I have(and the one with the most obvious treatment regimen). This is a lot to process hugs. I’m glad you’ve gotten clearer information and that your neurologist seems to be thorough and thoughtful.
    As for the list of don’ts…you survived the times you did these things, but now that you know, a bit of caution shouldn’t hurt you. It’s definitely scary though to learn in retrospect that things you did were less safe than you’d thought.
    I’m so glad that you’ve got the support you do and you know I’m always glad to be a listening ear.

    Reply
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