15 Things No One Tells You About Chronic Pain As A 20-Something

Syndicated from Huffington Post.

This was originally published on The Mighty, a site that finds the strength, joy and beauty in disability and disease.

1. Sometimes you feel like a lab rat/medical experiment gone awry.

"House M.D." doesn't even begin to cover all the weird treatments and experiments you've undergone to aid your health. Your "medical team" becomes the people you know and hear from most.

2. The idea of going out and maintaining a normal 20-something social life is laughable.

Think you're going out for a few drinks tonight? Oh wait, you can't because of your specific diet, medications you're on, etc. Friends may be disappointed. You may be bored (really bored). Netflix will be your bestie, don't worry.

3. Some people are really open and kind about your chronic pain. Some are just the worst.

Explaining your chronic illness truly becomes an art. You read their body language and take their past experience and personality into consideration before divulging your illness. Then, usually, it's a game of 21 questions.

4. There are good days and bad days.

Good days and bad days depend on a lot of the perpetuating factors you may have. Some days, I'm good enough to take a day trip to go shopping and other days, showering is a legitimate goal if you can make it out of bed.

5. You become your own doctor/pharmacist/advocate.

Doctors can make mistakes sometimes. I double-check all of the interactions of my drugs when I'm prescribed new drugs to make sure I'm not going to accidentally kill myself. Do your research. Many of the things that work for me now consisted of a series of trial-and-error combinations of medicine and therapies.

6. With chronic pain comes new and different priorities and limitations.

The way I best describe any given day is that my life is like an iPhone battery, and I'm on energy-saving mode. Everything from cooking, to getting dressed, to going out to eat, to working take a little (or a lot) of battery. Some things I used to love to do are just not worth it anymore.

7. Chronic pain is a full-time job.

I'm not kidding. If I could show you my calendar, between all my specialists, I have on average about four doctor's appointments weekly. Half of them are usually out of town -- meaning they're out of state. I also, on a monthly basis, get acupuncture, chiropractic work, Reiki, massage, trigger point injections and see a personal trainer (who specializes in chronic pain) twice a week to weight train. If something pops up out of nowhere and everything needs to be rescheduled, I'm on the phone for sometimes hours rearranging appointments.

8. Certain foods become your best friends.

When my pain was at its worst about a year ago and I had no medication to help my pain, all that could comfort me was mashed potatoes and ice cream. Turns out, mashed potatoes and ice cream are not a cute look for my body and with my physical limitations, cooking healthy food for myself and exercising is much more challenging.

9. Sleep, above all, is key.

Seriously, if I get no sleep the night before, my whole day and body goes to sh**. Getting enough sleep is worth it.

10. Maintaining a love life? LOL.

I haven't even begun to crack the chronic pain code on this one. I have no answers here.

11. Get a pain guru.

Having someone close who's been through the ringer with everything you're dealing with is so helpful. Anytime I call her frustrated about something, she has five to 10 different solutions I never thought of. My pain guru happens to breed puppies. Speaking of which, puppies are just about the best therapy you can have, so get those, too. Nothing feels better than lying in a pile of puppies.

12. You will have haters.

Send donations in their honor to your favorite chronic pain charity.

13. A few people will be inspired by you, a few people may feel too sad to even be around you and a few people may slit your tires when they see you in handicapped parking with a handicapped tag.

The tire thing didn't personally happen to me, but it did happen to someone I know. Don't forget, just because you can't see an illness doesn't mean it's not there! Don't be those people.

14. Silver lining: you get to watch every show you ever missed out on and try a lot of hobbies you never thought you'd have time for.

Hobbies I've started since medical leave: learning French on Rosetta Stone, writing, flower arranging, pottery, painting/sketching, jewelry design, puppy socializing, volunteering at a pit bull rescue, cooking, baking and reading.

15. Chronic pain has forced me to see the world in a different way. It has forced me to embrace all of my vulnerabilities and genuinely be a better person. Ironically, because of my chronic pain, I am now finally able to do exactly what I always dreamed of.

Yesterday, I spent an entire day under observation at the doctor's office.

Yesterday, my mom and I spent an entire day with my doctor at Hopkins (and stayed overnight) so I could try my last and final pain killer for breakthrough pain. 

It didn't go well. 

I tried sublingual buprenorphine (which is pretty much just sublingual morphine equivalent). We thought it was a good idea because it was mixed with naloxone (supposed to help with some of the pain killer side effects) and thought the sublingual would dodge my digestive track. Boy, were we wrong. 

The first hour was great. But after, within minutes, I started feeling insanely dizzy, nauseous, itchy and sweaty.

It progressively got worse. I physically couldn't move or lift my head up. If I did I would throw up, which happened a few times. I had to keep my eyes closed because the room was spinning.

I hadn't eaten or drinken anything since 7 AM, when we left in the morning. I should also mention I am hypoglycemic, adding onto the problems I was currently having, I was on the verge of fainting at any time. My doctor and I had some back and forth. We didn't know how long the drug would stay active in my system and I needed IV fluid and a Zofran drip. I also couldn't physically stand or sit up and the idea of stretcher seemed really good, but I ultimately decided not to, for fear that some dumb doctor I didn't know would try and pump me with more drugs I couldn't handle, so my mom went out to get my a wheelchair, I vomited the whole way to the hotel and just focused on not dying.

At 10 PM, my mom got me Chick-fil-a (which I normally would be against given the LGBT platform) but it was the first thing I ate all day and I just wanted a god damn chicken sandwich. And it was delicious.

My Love/Hate Relationship With Food Since My Diagnosis

This is a hard thing for me to talk about and a post I had been dreading for awhile. Maybe even more so than the pain itself. It wasn't until a few months ago that I could even say the word "weight" without starting to cry. I have gone up and down on the scale in the past but never like this. Once I got into my college routine I naturally lost enough weight to a point where I was incredibly comfortable with where I was. I walked (read as: pretty much ran) miles a day and was too busy to snack. At my smallest I was a size 4. Before my pain started, as long as I was continuing to run around like a mad woman, I could eat what I want and manage to maintain.

I think it first started when I was working after graduation in my new job. I was so physically and mentally exhausted from my job that I just ordered take out all the time. After I was diagnosed and my pain hit me like a ton of bricks, food became even trickier for me. After I was disability from work, I couldn't grocery shop or stand long enough to cook anything I bought so I needed to eat things that were instant and continued the take out trend.

Even once I moved home, I solely relied on my parents all of my food. Days that I had major, major pain, I told myself I deserved it and ate literally anything and everything with little to no exercise or even mobility. There were months I couldn't move- period. It was a good day if I made it up the stairs.  Naturally, 2 years in, I went from a size 6 to a 14 and gained 50lbs. It's still hard for me. I've received a general amount of pressure from my weight gain--when I gained my most weight I was self conscious about people seeing me eat.

But once the pain kicked, that was it. I used food as crutch and I was fully aware of it. I didn't care if it wasn't good for me because good food made me happy and I figured once I was "better", I would lose the weight. Good plan, right? (Side note: I love cooking/baking/eating in general. I am a huge foodie and at one point in college I seriously considered being a food stylist.) It was my only form of control I felt like I had on my worst days. At that point, I couldn't control my pain and I just felt lost. I had a closet full of clothes that didn't fit. On any given day with pain (which was most of them), I would say to myself "I deserve ice cream for dealing with this shit." Or mashed potatoes. Or anything. I just wanted so badly to feel comfortable.

If I had pain and was hungry, at least I knew I could solve my hunger. If I could physically make it out to a restaurant (rare), I went buck wild and ordered the most ridiculous thing I could fathom, usually including apps, entrees and dessert. In my old days, if I had gotten to this point weight wise, I'd be dieting and doing serious gym time. But once I was diagnosed, I had masked my depression with cooking and baking when I was able to.

Limitations are still my problem. I can plan a week's worth of meals, feel good, go out and buy the groceries and then have 3 bad days after that. By that time, all my groceries would go bad. I've also had to take into consideration things like hypoglycemia (caused by my trigger points) requiring me to eat every 2-4 hours (which I'm still not used to) or my whole body starts shaking, sweating and I start to throw up. With the severity of my acid reflux, I have a STRONG sense of smell since my nose surgery and there are certain foods that even if I smell, I throw up. I've been working for months to figure out how to make a good salad dressing because every single dressing in the grocery store has vinegar/mustard, which is another ingredient I've had strong reactions too. I've cut alcohol (which I never drank much in the first place) soda, and coffee out of my diet. There will be another post on this, but alcohol was not just cut out of my diet for GERD purposes---it dehydrates my body/muscles and made my pain worse.

Now I need to have healthy meals/snacks consistently (which sounds easy, but I always thought I was invincible and skipped meals if I got too busy) and watch things that trigger my acid reflux. The other major issue has always been my over-ambitiousness to lose the weight--I would work out so hard that I would hurt myself. This would cause me to be bedridden from days to weeks. Because of my low blood pressure from hypermobility, I also get extremely dizzy so I also need to keep a lot of salt in my diet.

Now that I am slowly getting better, I am starting to see a difference. I've seen a dietician several times and now have a personal trainer who specializes in chronic pain. My trainer is helping significantly and I am finally starting to get excited about going to work out! I'm start understand what's hurting, when and what I can do for it, but most importantly when I'm doing too much.

I've recognized things I naturally gravitate to (like bagels and ice cream) and substitute them for quick, healthier things that are still fast to make. As much as I can (with the exception of injection days), I am aiming to eat as many non-processed, whole foods with high fiber as possible. The high fiber helps with IBS. Like I mentioned previously, I don't eat anything with vinegar, coffee or alcohol anymore. Most of my key items: almond milk, organic high fiber cereal, heathy muffins, green smoothies, apples, salads, soup, fish, "healthy" desserts, hot lemon water, veggie omelets, whole grain e'erythang, popcorn, eggs, slow cooker steele cut oats, organic yogurt, a shit ton of water and tea and as many fruits and veggies as I can stand by slowly cooking them into other things, you get it. Substituting doesn't feel like I'm constantly sacrificing what I like and I don't want to deprive myself. I also try and cut down my portions.

I make a lot of different things all the time now but these are some of my go to fast and yummy recipes (most of the stuff I eat now doesn't need to be cooked since I am slowly working towards my whole foods goal):


Turkey Meatball Soup with Spinach and Farro (sometimes replace the farro with barley because Hershey's a shithole and sometimes doesn't have it) but this is a very good and filling lunch

Deep Dish Cookie Pie- this girl's healthy dessert blog is AMAZING--this recipe has a ton of chickpeas in it and is my favorite healthy dessert. So much fiber, I can't even handle it. 

Amazing Grass Green Superfood Berry- this is a great green supplement smoothie that I had 2 oz of water, 6 oz of orange juice and 3/4 of a banana too. Great for breakfast. Obviously, a green smoothie with real fruits and veggies would be better, but this is easier for me so it stays for now.

Slow Cooker Apple Pie Steele Cut Oats- this is super easy to make ahead of time and last for awhile.

Pumpkin Cream Muffins- only 75 calories and delicious, seriously...

Spinach and Mushroom Quinoa- quinoa doesn't always cook as fast as I'd like it to but this makes a pretty good pilaf style side dish

Roasted Shrimp Quinoa Spring Rolls- these are a little messy (the quinoa falls out) and hard to eat but totally delicious and worth it.

Banana Oatmeal Chocolate Chip Muffins- easy, yummy, GF, what more could you ask for?

I've finally got a good salad dressing and I'm going to start experimenting with other healthy desserts and veggie noodles like zucchini and sweet potatoes. 

Have a good evening. :) 

The 411 on Getting Injections

I decided, since I got my monthly injections yesterday, it would be good to talk about what happens when you get them, what they feel like and what I do to make it through post-injection hell.

Disclaimer: If you are a squeamish person/hate needles, do not read this. It isn't for the faint of heart. 

If you had the chance to read my story, you have some brief understanding. (I try not to make myself too redundant but I'm sure not everyone that reads my blog reads everything and I don't want anyone to miss out!)

The day/night before: My goal the day before injections, since there is a chance I won't be mobile for days, is to try and get any pending chores/errands done that need to be done and shower. Try not to mentally freak out. I usually get a lot of anxiety the night before injections (and yes, I had been getting them since January and weekly). Get some sleep and eat something healthy because the next day is not going to be a good (healthy) eating day. Do not make plans for at least 3-4 days after injections. You really cannot commit to anything after you get them.

The day/morning of: Wear comfy, loose fitting clothes. (No crazy/super sexy undies either.) You'll be in a gown and chances are, your entire backside (short of your underwear) will be exposed to several different people including your doctor, several residents and whatever poor relative has to watch this happen.

I also usually bring these hilarious stress squeeze pigs along with me because it fucking hurts and sometimes I bruise my parents hands from squeezing them so hard.

That being said, always bring someone with you. Depending on where you get the injections, I could barely stand/walk/function and clearly am not fit to be driving my ass anywhere. I also got a form filled out from a doctor for a handicap tag to put in my car for those special hip injections days where walking was not happening. Once you are finally on the bed/table, before anything starts, request numbing spray. The initial penetration of the needle will be much less painful and makes a significant different when you're doing 15+ injections and acupuncture in one session.

So, before I go into what physically happens, I want to show 3 visuals to explain what trigger points actually are:

Here, you can see where the muscle band is taut, there is a contraction knot vs a normal fiber. 

When you have one trigger point and it is activated or pressed, the pain can spread to several other areas surrounding it. That is referred to as "referred pain". 

Depending on the trigger point, doctors don't always injection straight into it, but will use several other techniques to deactivate it.

Before my doctor starts, we have a chat about which "areas" we want to focus on and what spots have generally been hurting me the worst. I'll decide to focus on my sides, lower back and back of my thighs for example and that's where the injections and acupuncture will be concentrated. The needles are usually pretty long and filled with lidocaine solution, but can also be cortisone/steroid and dry needling (good for if you have an allergy to lidocaine) as well.

The technique (per 1 trigger point) usually works like this: I show him the general area where I am getting a spasm, he pokes around and when I feel sharp pain (that may also shoot to another spot), he sprays the numbing spray and injects 5 separate spots around the trigger point, twists the needle and lets it hang for a while, while simultaneously injecting the fluid to deactivate it. Sometimes when this happens I cry instantaneously, vomit, swear like a sailor, feel like I'm going to faint, or all the above. Sessions usually take at least an hour. Just an FYI, when lidocaine is being injected, it usually feels like something is hot and burning as it goes in. You can feel it.

(My doctor at Hopkins does injections differently and it is much more painful/traumatic. He takes an even longer needles and goes in and out of the muscle until it is violently twitching and then ceases. I hated this.)

At this point, I am a mess and completely fucking over it. I am ready to go home.

After injections: Once I get home, I am usually miserable and try to take a nap to compensate for what I was just forced to experience. I usually nap for an absurdly long time but when I wake up, the pain is usually worse and I am probably nauseous from having so much pain. But comfort food always makes me feel better when I am having pain. One time I asked a pain specialist at UPenn what I should do when I'm having so much pain and he said to me "eat well." Okay, dually noted, pain doctor. (I will have a post of food in the near future.)

Things I ate yesterday after my injections (for realz):

• friend egg and cheese sandwich 
• meatball parm sub from my favorite local pizza shop
• lobster mac n cheese (my parents went out to dinner with my grandpa)
• chocolate cake 
• Drumstick ice cream cone
• raisins and iced green tea (healthy for some reason? >> not normal)

No shame.

If you're home alone after you get them and no one can make you things, my easiest meal was leftovers. We always keep them in the freezer. It is really important though to drink copious amount of water though. Even though it may seem like a super good idea, drinking alcohol isn't a great solution (unfortunately). It dehydrates you and never actually makes you feel that much better anyway. Also, if you're feeling really nauseous from all the pain, I take something called Zofran. It's a pretty intense anti-nausea medication, but it works better than anything else I've tried. 

Distraction is key post injection days. For me, when pain is bad, it is hard to focus on anything. Shows about anything with an involved plot or complicated thought is usually out of the question. I keep it easy and end up watching shows as dumb as they get like Spongebob Squarepants, Rocko's Modern Life, Sex and the City (that show is dumb), Bob's Burgers, Family Guy, Too Cute! (if you haven't seen this show on Animal Planet, you need to.) or just any old cartoons you used to watch on Nick as a child, etc. (I plan on making a pain scale with equivalent, corresponding TV shows at some point for your reference in the near future.) 

Needless to say, make sure you have heat and ice if you need it and something to help you sleep. When I first started getting injections, it would freak out my entire body and then the rest of my body would start spasming after the injections (if that makes any sense--some of this shit is hard to articulate). I was and am still not sleeping well. Even though I surprisingly fell asleep relatively early last night (before 2 am) watching Too Cute!, I woke myself up from pain early this morning and was incredibly nauseous. The Zofran helps, but it's not completely taking the nausea away.

The other thing that helps: having (what I call) a "pain posse". This consists of a group of (at least) 2 dogs that will never leave your side.

These two laid beside me all day yesterday. 1) Because they're needy/a little clingy. 2) Because dogs rule. 

Usually the first and second day after injections are the worst and I always hurt the worst first thing in the morning and late at night. But, after three or four days I can tell I am slowly getting better. My best tip is to ease yourself back into doing things once you're feeling better. Don't, for example, go for a hike or take a trip 3 days after your procedure. I usually start off with, as sad as it sounds, going to the grocery store, baking something relatively easy or attempting to take my dog for a light walk. (She's insane so this isn't always my go-to thing.) The next day back at PT post injections is also a water therapy day to ease me back into exercising. (i.e. I got my injections on Thursday and the following Tuesday will be a water PT day, Thursday will be back to land exercises.)

This may all seem mundane, but it really is important to know if you have the unfortunate possibility of starting lidocaine injections. It took me a while to figure out but now luckily my recovery time is a lot shorter and lot less painful than it used to be!

Now, back to Rocko's Modern Life.