An ADHDer's Guide to Chronic Pain: Getting a Diagnosis
If you haven’t read the other parts of this series yet, here they are!
An ADHDer’s Guide to Chronic Pain: Daily Management Part 1
An ADHDer’s Guide to Chronic Pain: Daily Management Part 2
I’m a young adult with both ADHD and chronic pain. These two issues can often work counter to each other and cause a lot of frustration, but over the years, I’ve learned a few tips and tricks to get better about dealing with both of them. This two-part blog post series will hopefully help other people dealing with the same issues- the first one will address getting a diagnosis, and the second will address day to day management. 😊
First, a little background.
ADHD: I was diagnosed with ADD (now referred to as ADHD) in my junior year of high school when I basically had a depressive breakdown due to stress from my undiagnosed focus issues. I went on ADHD meds at that time (Concerta) and remained on them through college. I eventually stopped taking them for a couple of years, not really for any good reason that I can recall. I went without them for probably 5-6 years, but got back on them after about 8 months into my current job. My job can often be repetitive and unexciting, and these things set my ADHD off like crazy, so I really needed to have the meds to function. I’ve been at my job at just over 2.5 years now, so clearly they’ve helped! My main ADHD symptoms are forgetfulness, time blindness, focus issues, and impulsivity. I use a lot of different techniques to keep focused at work, which I blogged about here.
Chronic Pain: I have experienced some degree of stiffness and pain in my neck since at least high school. I cannot recall exactly when it started. I was officially diagnosed with osteoarthritis in my cervical joints (neck joints) in 2017 shortly after I turned 29. I’ve tried a TON of different things to help my pain, but currently, I get my arthritic nerves burned off with radiofrequency ablation 1-2 times a year, I get massages at least once a month, and I do daily physical therapy exercises and stretches. The PT is a really recent addition, but it’s been WONDERFUL; these exercises have really improved my symptoms!
I have also had some other recent chronic pain issues that are of a slightly more private nature that I’d rather not discuss in too much detail. However, I handled getting the diagnosis of this pain MUCH better than I ever handled my osteoarthritis pain, so I’m going to use that process as an example for a lot of my tips here.
Getting a diagnosis of your chronic pain can be a complicated and frustrating process even if you DON’T have a mental condition that reduces your ability to remember symptoms and advocate for yourself. But hopefully this guide helps!*
(*Quick note: this guide doesn’t address money and insurance issues because that’s a whole complicated issue on its own that I’ll try to discuss in the future.)
1. Pay attention to your pain. Don’t ignore it; your body is telling you that something is wrong! It almost certainly won’t go away on its own, and ignoring pain can lead to exacerbated symptoms over time.
I ignored my chronic neck/shoulder pain for YEARS, to the point that I literally can’t remember when exactly it started. Part of this was ADHD forgetfulness – I’d intend to go to a doctor and forget to put it on the calendar and part of this was just not wanting to make a fuss. Women in particular in our society are often taught to just grin and bear it, and I think I honestly took that too much to heart. I didn’t want to be annoying or a burden. In addition, when something is chronic, you often get so used to it that you don’t even consider it something abnormal or worth reporting. So I said nothing and I did nothing about it until it became too painful for me to ignore. And that’s sad, because honestly, if I had received treatment and physical therapy years ago, I probably wouldn’t have developed the level of osteoarthritis I have now. This is not a reversable condition, so it’s just something I have to manage from here on out.
Let me emphasize something here. Chronic pain is not normal. I don’t care if the pain isn’t too bad or if it’s manageable. It needs to be addressed.
Fortunately, when I developed New Fun chronic pain this past year, I started addressing it much more quickly and scheduled a visit with a doctor right away.
2. Document Everything. As someone with ADHD, I’m really bad at remembering things. This led to some trouble when I tried getting my neck pain diagnosed, as I’d get asked if there was any inciting incident, or exactly when it started, and I had to say that I genuinely didn’t remember. That was fun.
When I developed my New Fun chronic pain, I started writing down when my pain appeared and where it appeared. I initially chronicled this (unintentional pun!) in the notes app on my iPhone. Eventually I downloaded the Cara app, which allows me to track a LOT of different things and symptoms – pain but also what food I was eating, when I was working out, etc. This was really helpful in tracking down what my actual issue was.
3. Persist in Advocating for Yourself. The first doctor you see for your chronic pain may not be the right one. Pain in any one area can originate from several different places! And the doctors or health professionals you see may not be terribly helpful in giving you next steps to take in figuring out your diagnosis, so you’ll have to keep working on your own to get there.
In my 20s, I talked to my primary care doctors several times about my neck pain. One of them thought it might be just due to stress, and told me to stress out less (that was helpful). She also briefly put me on anxiety medication, which didn’t help my pain at all, and made me feel like I was losing control entirely (I got off it really quickly). I saw a pain doctor in Chicago who put me on some prescription strength NSAIDs, but said he couldn’t do anything more for me without an MRI, which I couldn’t afford at the time (my insurance was….really bad at the time and my deductible was sky high). So I had some pain relief for a while, but then I ran out of refills and went through minor withdrawal. I also saw masseuses, a chiropractor, an acupuncturist, etc. – nothing worked. This was over the course of YEARS. Once I got my current job and got good insurance, I went to my current pain doctor, who diagnosed my arthritis with one X-ray and started getting me treated immediately with radiofrequency ablation. After a couple years of that, I was still having more pain than I liked, so I went to physical therapy this last May, and finally got my pain really reduced!
A screenshot of the Cara app I used to track my symptoms.
For my New Fun chronic pain, I initially thought it was due to one specific issue, and went to specialist A for it. Twice. Specialist A ran tests on me twice and said they were clear, but didn’t give me any idea what else it could be or any guidance on what to do next. She DID however help me, because she made an off-hand remark about “oh there are thousands of things that can cause X,” which made me realize I really needed to go to my primary care doctor next. I went to PCP, he ran some tests, those tests were also clear. By that time, I had done a decent amount of research online and talked to my family about their various medical histories and come up with a hypothesis as to what was causing the pain; so after the third test came up without any problems, I went to specialist B, he ran a test, and FINALLY, I got a diagnosis and got put on some meds to get rid of the problem.
I had to do a lot of work by myself. I had to continue booking appointments with doctors until I got a diagnosis, google a lot about my symptoms, gather information from my family, come up with ideas as to what the issue might be, and keep track of what it definitely was NOT so I could relay that to my doctors throughout the process. It was kind of exhausting, and not cheap (even with my very good health insurance). I highly suggest ZocDoc for finding doctors in your area that take your insurance and setting up appointments; I know my ADHD brain always procrastinates making a phone call, and just being able to book an appointment online was a huge weight off my back.
So that’s what I have for getting a diagnosis. Next blog posts in this series will deal with pain management for ADHDers. You can read those here: