What Would My Life Be Like Without Chronic Pain?

I’ve been thinking recently about what my life would be like if I did not have chronic pain.

I generally try not to dwell on such things. Despite having clinical depression, when I’m /not/ in the midst of a depressive episode, I’m a generally optimistic person who tries to see the best in every situation and every person. It’s not really my nature to ruminate on the “ifs” about my body I can’t control. And really, although I have chronic pain, I haven’t had to have surgery, and I can generally function okay, so I consider myself very fortunate compared to plenty of other people with arthritis.

But this pandemic and prolonged self-isolation with no regular contact with anyone except my husband has brought out more of my melancholy side, and the fact that I couldn’t get a massage for three months has only emphasized how my pain influences my life. I can now get massages, and just returned from my second one since Virginia tentatively started allowing them again, and part of me just can’t help but wonder. Massages can help me get to a 4/5 pain level out of 10 rather than a 7/8, but what if I could actually get to 0?

If I didn’t have osteoarthritis in my neck that has led to chronic neck and shoulder pain over the past 10+ years, what would my life be like? What would I be like? Would I still be the same person?

For starters, I’d have a lot more money. I wouldn’t have racked up the credit card debt and personal loans that I did during law school and post-law school, as I wouldn’t have had to see the massage therapists, the chiropractor, the acupuncturist, and the doctors simply to cope. I wouldn’t have tried anxiety pills that never worked for my pain. I wouldn’t have bought countless numbers of massage tools, pillows, and posture correctors, hoping that something would work. I wouldn’t have had to have so many massages a year just to manage. I wouldn’t have gone through so many rounds of steroid injections to prove to insurance that additional treatments would work. I wouldn’t have gone through radiofrequency ablation on my neck twice, burning off the arthritic nerves there. I wouldn’t have gone through two rounds of prolotherapy, hoping maybe it would strengthen my tendons and ligaments enough to lower my pain. I wouldn’t have gone through physical therapy for my neck, going 2-3 times a week for over a month to learn strengthening exercise for it.

Think about how much time that all took too. What if I had that time back? What books could I have read? What friends could I have spent more time with? What blog posts could I have written?

Although my clinical depression and ADHD were both diagnosed in high school, when I still had only a stiff neck and not a chronically painful one, would either condition be nearly as bad as it is without my pain? Would I have the attention span of more than a cat? Would I be on the pills I’m on or would I use the mental health tools I do to keep my mental state under control? 

Would I be interested in having children if I didn’t have pain? If pregnancy wouldn’t exacerbate all my existing pain issues considerably? If I didn’t have to think about how carrying a small child around with me would affect my pain? More than once while playing with a small child I’ve had to ask them to be careful with my neck or my shoulders while they roughhouse or hug me or whatever.

I probably can’t give a kid a piggy back ride anymore. I don’t know. I haven’t tried it since I was diagnosed with arthritis.

Of course I have many other reasons for not wanting children, but the increased pain is such a huge issue (regardless of the methodology of acquiring said child) that I have no idea how I’d feel without that. I would have liked to be able to make that decision on my own.

I would be able to sit on a couch for longer than 10 minutes without worrying about it increasing my pain and giving me a nasty headache. I wouldn’t have to sit in floor chairs while watching TV. I could go likely out in the sun without sunglasses without getting a headache almost immediately. I could craft without worrying about how much I’m looking down at my work; looking down always makes my pain so much worse.  

I could try as many different types of exercises as I like without worrying about my neck. Perhaps I wouldn’t have to eat carbs to get rid of my cervical headaches. Perhaps I wouldn’t struggle with my body image or my diet or my overall health the way I do.

Or perhaps I would. I don’t know. I’ll never know. This is as good as it gets, kids; there’s no cure for osteoarthritis and I’m certainly not getting any younger. Unless someone manages to develop a miracle treatment in the future, this chronic pain is a permanent thing.

I’m not holding my breath.

You know, I used to love riding roller coasters when I was younger. I miss that. Roller coasters hurt me now. It’s such a stupid little thing that really doesn’t mean anything in the grand scheme of things. But I used to love the way they made me feel, the whoosh and the speed and the screaming at the top of your lungs as you hurtled into the sky above. And I can’t feel that way anymore. If I do dare to ride one, I take pain meds and anti-nausea meds before hand and anticipate feeling shitty afterward. It’s hardly ever worth it for the trouble. I miss the freedom I used to feel.

I could go to bed at night without using a heating pad on my neck. I could wake up in the morning without thinking I need to do my stretches and exercises and use my massage machine or my massage ball. I could maybe even survive a week without ibuprofen or acetaminophen.

At 32, I could look forward to the rest of my life without knowing with certainty that I would be in pain for all of it.

It seems silly to complain. I am so fortunate in so many ways. My problems are little compared to so many people in this world. I’m really fine. Don’t worry about me; I’ll be fine. Go worry about people experiencing systemic racism, or the protesters getting abused in the streets, or about the essential workers who’ve been working for ages to try to save lives, or about any of the countless other things wrong in this world that we need to try to fix.

But sometimes I just can’t help but wonder.

I'm a ChildFree MomFriend and That's Just Fine With Me.

I used to think I really wanted kids, but over time, as I grew up and realized that I didn’t have to want the same things as everyone else, I determined that it was a lot more complicated than that.

Now, I’m not anti-kids at all.My nieces are one of the best parts of my life and I really enjoy talking to children. They’re hilarious. But I also really enjoy handing them back to the parents at the end of the day and going home with my husband to a quiet house. I totally support any of my friends who want to have kids and will cheer them on and give their kids stuffed animals and personalized onesies galore, but it’s just not for me. And John agrees as well!

Me as a kid, with my dad. I was a handful, can you tell? And let’s just be honest, if John and I procreated, our child would be way too smart and mischievous for anyone’s good.

I DO have some very maternal qualities, and I really enjoy taking care of other people. A friend labeled me “a momfriend” not too long ago, and I loved it. I want to check in on my friends and make sure they’re doing okay; I definitely worry about them and try to help them whenever I can. I love having a house that my friends feel comfortable in and I hope they realize that they can always come over if they need to get away from their parents or roommates or boyfriends or whatever. I like feeding people! I also adore my cats and mother them ferociously. But just because I have those qualities doesn’t mean I want to be an actual parent.

First, I have lots of medical issues, y’all. Chronic neck pain from osteoarthritis, clinical depression (which is controlled and generally stable now, but still exists and is a real concern in my life), ADHD, the New Fun Unnamed Chronic Pain is still rearing its ugly head pretty regularly, bad allergies, plantar fascitis (so my feet hurt all the time, yay), occasional tendinitis in my wrists, and now I have this deviated septum thing that needs to be fixed. Have I mentioned I also have a bicuspid aortic heart valve? I literally have a valve in my heart that’s SUPPOSED to be 3-sided but is actually 2-sided. This doesn’t generally cause a problem, but it does make me more prone to infections and such. And I’m 31! Like - who knows what else is wrong with me that I just haven’t discovered yet? I may develop something new tomorrow. And pregnancy and a baby would literally make all of those issues worse. It wouldn’t improve /any/ of them.

Second, partly because of said medical issues, partly because of…just my own personal feelings, pregnancy is like one of the most terrifying things in the world to me. My body does PLENTY of things on its own already that I don’t want it to do; the thought of actually losing it to another being is really unpleasant. Every time I hear about someone’s pregnancy or what it does to them, I just….ugh, no. It sounds awful. No, thank you. I’ve already firmly decided that if I ever DO change my mind and want a child (not likely), adoption is the way we’re going. I know it’s expensive and not easy, but pregnancy is just not a thing I’m ever willing to go through. My feelings might rise to the level of an actual phobia of pregnancy, honestly; it’s called tokophobia! It sounds like it’s hellish for people who WANT kids but are terrified of pregnancy/childbirth; I feel lucky that that’s not my situation.

I did almost buy this father’s day card for John and sign it from the cats, but I just sent him a picture to save $5 instead, lol. (He HATES the entire concept of calling pets your children, hah).

Third, from a purely practical standpoint, life is expensive and my husband and I are often struggling even just with us two. And we’re lawyers! We’re better paid than many! But our house has lots of issues that still need to be fixed and my body persists in developing new problems that require lots of money, so money is still a serious concern. I can’t even comprehend the idea of trying to fit a kid into our budget.

Finally, I just really like my life the way it is. I enjoy having time to spend with my husband and with my friends. I like being able to participate in community theater. I love that my day job is flexible enough that I can also fit in writing on this blog and creative writing! I want to travel the world and see everything out there. These things are all certainly possible with children, but they are certainly much more difficult. And it should be! I value children enough to know that having them shouldn’t be a default or an afterthought. I don’t want to have kids unless I KNOW I really want them and am wiling to put in the time and money and effort needed to being the best parent I can be for that kid (not in a pinterest perfect way but in a “I need to help this tiny human become a decent person” way). And I’m not willing to do that, so - nope! No thanks. I’ll spoil my family’s kids and friends’ kids instead. :)

On Being Ill, with Rachael and Virginia

While on the subject of chronic pain, it appears I might have an even newer, funner type. :/

As I’ve mentioned before, I’ve been feeling pretty terrible for the past ~5 weeks at this point. I’ve been having a ton of painful sinus pressure, headaches, and fatigue, along with fun spats of dizziness, lightheadness, blurry vision, and nausea. I’ve seen my general practitioner twice in the past month; he said my sinuses were inflamed, so we assumed it was a sinus infection. I’ve tried three different antibiotics and a course of oral steroids.

This photo meme of my cat wearing a tie has nothing to do with this post but look how charming he is!

I still feel awful, so I went to an ENT (ear, nose, and throat) doctor yesterday. Dr. Sharma looked around in my nose with a scope and told me that there’s actually no sign of a sinus infection at all, or any sign of what is actually causing the pain. He posited that it might be a side effect from one of my medicines, so he started looking around online for those, but didn’t find anything that seemed to fit. His next suggestion was to wait a few weeks before I get a head CT, but it’s been so long and this is really affecting me so badly at this point, that I just asked if we could do the CT now. I’ve got an appointment next Wednesday.

This constant pain in my maxillary sinuses and head is really starting to take a toll. I’ve had way more trouble this month focusing on work than I usually do. I’ve taken off more sick days than I have in years (although of course not as much as I’d like, because I can’t actually afford to take off that many days), and I haven’t been writing as much on my short stories or on this blog as I’d like. And now on top of that, I’m worried about what it might be that’s causing all this. It might be like, sinus headaches or something simple I can treat relatively easily and quickly. Or it might be something more serious (my mother helpfully informed me shortly after I relayed this information to her that two members of my family have died from brain aneurysms in the past. So comforting, right?).

I’m rather nervous about it all, and my nerves are already frayed from ~35 days of sinus pain and headaches, but I’m trying not to google symptoms any more and just be patient. I may need to meditate and read a lot more over the next couple days to keep my mind off of it. Because even if the CT doesn’t give me a definitive diagnosis, it will at least be helpful for ruling out options.

It all makes me think of Virginia Woolf. In 1925, when she was in bed recovering from suffering a nervous breakdown, she wrote “On Being Ill,” a beautiful essay on the nature of illness that was published by T.S. Eliot in The Criterion. In it, she asks, how can something so common and universal be so little written about?

Her opening sentence can be a little hard to read, as it just keeps going and going, but it is so beautiful when you actually parse it out and examine it [line breaks mine]:

Considering how common illness is, how tremendous the spiritual change that it brings,

how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to light, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us in the act of sickness,

how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of the angels and the harpers

when we have a tooth out and come to the surface in the dentist’s arm chair and confuse his ‘Rinse the mouth—rinse the mouth’ with the greeting of the Deity stooping from the floor of Heaven to welcome us

—when we think of this an infinitely more, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature.

Then she continues:

Novels, one would have thought, would have been devoted to influenza; epic poems to typhoid; odes to pneumonia; lyrics to toothache.

But no; with a few exceptions De Quincey attempted something of the sort in The Opium Eater; there must be a volume or two about disease scattered through the pages of Proust—literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear, and, save for one or two passions such as desire and greed, is null, and negligible and non-existent.

And so she continues. You should go read the whole thing, it’s great.

I would like to write such wonderful odes to sickness. I think I will at some point. I feel I am getting better at writing all the time; already, just looking at stories from a few months ago, I see the things I would change or phrase differently now. I see how I would tighten a chapter or make a story beginning more interesting. I will write such things soon, but for now, I am behind on a short story I wanted to have finished, polished, and published online by now, so I should go work on that. But yet my head aches so, even with loads of ibuprofen and sudafed, and it is difficult for me to remember from moment to moment what I should be doing.

The “On Being Ill” essay was actually the first one to really get me to understand “creative nonfiction” as a concept. I learned about it from “Reading Like a Writer,” by Francine Prose, which helped me really start to think about the craft of my writing. That section actually helped “Estate Sale,” which was my first real attempt at creative nonfiction. I tried to emulate a lot of the imagery filed sentences and careless grammar that Woolf uses. This book also fed into my short story “The Caterer,” as it was what inspired the first and second person POV.

I don’t exactly know where I’m going with this post. I’m essentially saying I plan to write something epic and beautiful about illness someday, but not right now. This is but a Tribute .

An ADHDer's Guide to Chronic Pain: Daily Management Part 2

 If you haven’t read the other parts of this series yet, here they are!

An ADHDer’s Guide to Chronic Pain: Getting a Diagnosis

An ADHDer’s Guide to Chronic Pain: Daily Management Part 1

4. Make Simple Adaptations in Your Daily Life to Reduce Your Pain

If you’re still having pain issues after getting treatment from a doctor and/or a physical therapist, look at what else is going on in your life that might be exacerbating it. Even if one thing isn’t /causing/ the pain, doesn’t mean it isn’t a factor in it. There are often a lot of small changes you can make to your life to reduce your pain level.

For example, sitting on a couch can actually really make my neck pain worse. It promotes bad posture and doesn’t give me the support I need. So I pretty much never sit on couches these days. I use a floor chair, which offers me a lot more support and still allows me to “chill out” in a way that a straightback chair doesn’t. Heavy purses also can make my pain worse, so I usually use a backpack if I’m carrying anything significant around. If I do use a purse, I make sure to regularly clean out anything that could make it heavier.

If you have neck or shoulder problems, like me, make sure you’re using a mattress and a pillow that properly supports your neck and body. You spend so much time sleeping that you NEED to have a good setup or you’re going to just undo all your pain relief work every night in bed. People have different opinions on pillows; I have, gosh, probably 3 that I’ve bought specifically for my neck? One that has water in it, another that’s got microfoam beads in it, and another one that’s memory foam. I’ve tried them all and the memory foam one works best for me personally, but you should try them out and take notes on how you feel the next morning to figure out what works best for you!

Finally, I’ve done a lot of research on home office ergonomics and made sure that my workspace actually fits right for my body. I recently discovered that my desk and chair heights were completely wrong for me! I’m so short that the average measurements for a man just aren’t accurate, so I had to modify a few things and add in a foot rest to make it all work. I also use a headset while making or receiving phone calls so I don’t have to crane my neck in weird ways to hold a phone.

5. Massages and Home Tools for Muscle Pain

Massages have never “cured” me of my pain, but they do tend to really loosen up my muscles and prevent them from “fossilizing” or getting overly stiff. I have a Massage Envy membership and go in once a month as a maintenance measure.

I wish I could afford to go in more often, but since I can’t, I also have numerous tools at home that I use for massaging or relaxing my painful neck/shoulder muscles. I leave little reminders for myself to use these tools in a mass to-do list note I keep on my phone and in my journal. Alarms can be good for this too, but if you’re setting an alarm for medicine and stretches and pain relief tools, you might just get to the point where you have so many that it doesn’t even register for you, so be careful with that.

Me using the acupressure mat and pillow while guest cat Martok nests in my hair. He LOVES my hair.

One of my favorite tools currently is an acupressure mat and pillow, which has tiny plastic spikes all over it. I don’t entirely know how it all works, but lying on this really relaxes my neck and shoulders and make them feel like they’re “melting” and less stiff. It’s a relatively cheap option, but you do need to lie on it for 30 minutes + for it to have any effect. In addition, for best results, you probably want to be shirtless. So it’s not the most convenient pain treatment.

Another cheap and easy options are tennis balls and pressure point tools. I keep a Back Buddy Jr. by my desk and pull it out to work on my neck when it’s getting really stiff. It’s great for pushing on stiff areas you can’t quite reach on your own. Lying on a tennis ball or putting it in between your pressure point and a wall can be really effective, if initially painful. With these tools, you can either just apply pressure straight on, or you can rub the tool or ball around and on the stiff point; both techniques work pretty well.

I also have a massage machine that works really well when placed between my neck and a wall, but its fabric cover has come off over time, so it’s more painful to use than it used to be. I can’t use it too often without really irritating my skin.

6. Use Over-The-Counter Medication and Treatments

If you have chronic pain, you’re probably very familiar with ibuprofen, acetaminophen, and aspirin. These can be really valuable tools in reducing your pain, but remember to watch your dosages and not overdo it; you can definitely screw up your stomach or other parts of your body. Also remember, no aspirin if you’re under 18!

Here’s another trick though: taking a pain reliever with a small amount of caffeine can actually reduce your pain further. It’s unclear how much caffeine can do on its own, but it does appear that it can reduce joint pain and headaches as well. This article on Disabled World explores that topic if you’d like to know more.

There are a few natural supplements out there that can really take the edge off pain as well. I’ve tried turmeric and capsaicin pills before and had some good results. I also take vitamins, fish oil, and probiotics, which all play different roles in keeping my body healthy and reducing inflammation. WebMD has a great overview article of different supplements and how they treat pain.

Finally, don’t forget topical treatments! Lotions or rubs containing menthol or camphor create a cooling sensation that can really distract you and make you forget the pain. Capsaicin lotions can also really help joint pain or nerve pain, although it can also irritate your skin if you’re not careful. In addition, you’ll want to use gloves to apply this, as it can be pretty difficult to wash totally off your hands. I’ve accidentally got capsaicin in my eye before and it really hurts!

Well, that’s all I’ve got for now. Thank you for reading. I hope this helps!

An ADHDer's Guide to Chronic Pain: Daily Management Part 1

If you haven’t read the other parts of this series yet, here they are!

An ADHDer’s Guide to Chronic Pain: Getting a Diagnosis

An ADHDer’s Guide to Chronic Pain: Daily Management Part 2

I wrote this whole post and then realized it was over 2,000 words and should probably be split into two parts. Oops! Here’s the first one!

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 blog post series will hopefully help other people dealing with the same issues- the first post addressed getting a diagnosis, and the second and third posts will address day to day management. 😊

The first post also summed up my background with both ADHD and chronic pain, so this post will go ahead without recapping that much.

I tried a LOT of different things to treat my chronic pain before I actually got a diagnosis of osteoarthritis, but I’m going to focus on the time /after/ I got a diagnosis, just for simplicity’s sake. If you are having chronic pain, I do think it’s important that you get to a doctor to figure out what the underlying issue is, if at all possible. If you don’t have the insurance or money for a doctor though, there are a lot of options out there for DIY relief, which I’ll cover further down in the post.

A lot of this advice focuses mostly on painful muscle treatment, because that’s what I deal with and am most familiar with, but hopefully the general headings and tips are helpful even if you have non-muscle pain issues! I’m not going to discuss opiates in here because I personally have very little experience with it and don’t feel fully qualified to cover it in depth. I do have friends that use opiates for pain relief though, and I plan to interview them for this blog soon!

1. Follow the Treatment Your Doctor Prescribes.

I currently undergo radiofrequency ablation about once or twice a year; this burns off my arthritic neck nerves and really reduces my pain. However, 1. this procedure never COMPLETELY erases my pain, 2. the procedure itself is very painful and expensive (even with insurance) and 3. the nerves grow back and I have to go through it all again.

But it’s still the best option I have for actually treating the root cause of my chronic pain, so I undergo it. Don’t let yourself feel guilty for using what’s available to you. A lot of people out there say “Oh why don’t you just do X?” or try essential oils or whatever and downplay your pain; ignore them. You, as the owner of your body, get to decide what’s best for treating its pain (in conjunction with your doctors)

If the treatment you’re getting isn’t helping as much as you thought it would, or if it’s giving you bad side effects, let your doctor know! A lot of times you can follow up with your doctor without actually coming in for an appointment. My pain doctor actually is cool with me emailing her, which can be VERY helpful, as I’m bad about remembering to call her office and setting follow-up appointments.

2. Try Physical Therapy and/or Daily Exercises/Stretches!

So after I told my pain doctor that the radiofrequency ablation wasn’t completely getting rid of my pain, she wrote me a referral for physical therapy. I then ignored that referral for like, a year and a half, because I had some strange idea in my head that PT wouldn’t help me. I had gone through some basic stretches with a chiropractor years before and that didn’t seem to do much, so I didn’t believe it would help this time either.

However, earlier this year, I managed to pull a muscle in my leg badly enough that I was still in pain a few months after the initial injury. I did actually go to PT then (after getting a referral) and it REALLY helped me. I was out of pain before my second appointment. That made me a believer and encouraged me to finally sign up for physical therapy for my neck! I did about a month-ish of PT and it made SUCH A HUGE IMPACT on my pain. It really reduced my every day pain level and reduced how many tools I had to use to manage the pain. My therapists taught me various exercises and stretches and had me do them daily; they also did a few dry needling spots, massages, and manipulations on them. I’m now capable of treating a lot of my own issues at home. It’s pretty awesome.

So I highly suggest Physical Therapy - when you get that referral, set up an appointment with a PT right away so you don’t forget it or lose the script! And once you start doing the exercises and stretches, put an alert on your phone or computer so you remember to do them daily. I’ve got a “neck stretches” one that goes off every night at 9 pm. And if you’re not as connected to your phone as I am and need a different reminder method, a post it note on your bathroom mirror or by your daily medicines can be a good method.

3. Pay Attention to Your Mental Health Too

Honestly, chronic pain can be incredibly disheartening and it can really mess your brain up. For a while when I was younger, I developed a certain fatalism and would often say things like “oh I don’t think I’m going to live past 30,” because no one I knew had the same pain problems I did. I clearly remember asking my parents at one point if they had chronic pain issues. They said no, and I was seriously so depressed by that. I was 24 and having more pain problems than my almost 60-year-old parents.

When you have chronic pain issues, that does become the focus of a lot of your medical visits. However, be sure to talk to your doctor about your mental health as well. If you’re experiencing mood swings, feelings of guilt, worthlessness or helplessness, irritability, persistent sad, anxious, or “empty” feelings, a loss of interest in things that were once pleasurable to you, and/or major changes in your sleeping or eating habits, get to a therapist as soon as possible. Talk Therapy can be incredibly helpful for sorting through a lot of these thoughts and you may be able to get a prescription that could help you as well.  

Walking outside can also be a great tool for helping your mental health. It’s low-level exercise that gets you moving and makes your brain release serotonin, which can be a mood lifter and a pain reliever. There are also studies that show that just being outside under the sun can have a huge impact, so if you’re not up for walking or doing anything else, just sitting or standing outside for a bit can be helpful as well.

Don’t forget to read Daily Management Part 2 as well!

An ADHDer’s Guide to Chronic Pain: Daily Management Part 2

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:

An ADHDer’s Guide to Chronic Pain: Daily Management Part 1

An ADHDer’s Guide to Chronic Pain: Daily Management Part 2