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.

Catch Up Post

Hi guys! Sorry I've been MIA for a little. A lot of things going on. Just wanted to check in and post about some of the things I've been using lately that have been helping. The past or month or two have not been the greatest (pain-wise) but I'm convinced things will start to get a little better soon. Myofascial Pain Syndrome is a high maintenance syndrome--I need to do a lot to keep up and feel as normal as possible. Dealing with myofascial pain, to me, is essentially figuring out all my perpetuating factors and figuring out how to correct them (i.e., posture, headaches, balance issues, etc.)

1. Sleep (at least 8 hours, or I know I'll feel like shit. Sorry morning people, I won't be around.)


2. Supplements- I am currently taking B-12 and D for those vitamin deficiencies as well as turmeric, Biotin, Align (probiotic), a multivitamin and a few other random ones. I've really tweaked it down and this is what's working for me. Although the grass is always greener, so I'm constantly looking for new and better things.

3. Exercise and Wellness- This is been a long process for me. The last few months I was really starting to think I was plateauing. I was discharged from PT but it was hard to get to the gym to do my exercises. Swimming feels great but immediately getting out of the pool, freezes my muscles and puts me back where I started. I also feel it's very important to have a professional watching you to make sure you don't re-injure yourself, which is very easy to do.

LUCKILY, I have a found a trainer I just started with last week who specifically deals with people with chronic pain. I think it's going to go great but it'll take some time to tell. Ultimately, I need to get myself back into shape and straighten all my muscles that have atrophied and this guy will most likely be the best way to make that happen.

Once or twice a month, I am also going to a chiropractor to get realigned and a massage therapist who works at calming down my nervous system. (Fun fact: when you become a chronic pain sufferer, you become conditioned to associate touch negatively from constant poking and prodding.) Massages are slowly starting to feel good and become less painful.

I am also continuing to get injections once or twice a month depending on the severity of the trigger points. My last visit had 8 people total in the room watching me. I am really developing a posse. And I also made them take a picture because I knew no one would believe me. I spent the next hour or so answering questions and lecturing a bunch of 2nd years about MPS and hypermobility.  I kind of love explaining medical related things to med students as the girl in fashion.  Suck it, med school.

I'm also talking to my therapist when I need her. I think I've been able to handle my stress more lately. 

4. Knowing Your Limits- This seems like it should be pretty simple but is still hard for me to this god damn day. Take breaks before you get pain--whether you're cooking, shopping, whatever. Bring snacks if you get hypoglycemic. Don't be an idiot.

5. Potential Breast Reduction Surgery- Met with a doctor a few weeks ago after both my doctors suggested breast reduction surgery. My posture is bad and I have a lot of trigger points around my bra areas. I don't think it wouldn't..not help at this point, although it will be miserable to do without pain meds. Sad face. But assuming it will be covered by insurance,  I am very excited at the thought of having normal sized boobs.

6. New and Old Products I am continuing to use for pain-
(Where to buy old products in previous posts.  I will link new products.)

China Gel

Kinesio Tape- Like I said earlier, posture is a super important perpetuating factor in dealing with trigger points. Until I can get my breast reduction surgery (and after), I will need to strengthen my muscles to better my posture. You can wear this stuff for a few days and it's pretty water proof, so I even wear it in the shower. I've had PTs put it on me before but I actually prefer the way I do it. You can watch Youtube tutorials but I know what I needed.

RAGE Muscle Therapy Curve Cane- This thing kinda looks like some wild sex toy,  but it's just a theracane for athletes. I like it because I hate touching my trigger points. A lot of them are in my neck and shoulders and this crazy thing actually helps sometimes.

Instant Cooling Towel- So guess what store indadvertedly has the best trigger point stuff? Dick's Sporting Goods. Their Sports Recovery section is just ridiculously awesome. You can wet this towel and it'll immediately stay cool for like 2 hours. Cool, right? Good for long car rides, impromptu pain situations. Me likey.

Aches and Pains Shower Gel- This is made with eucalyptus and menthol. Feels good in the shower and lets me do a little more than I usually could post shower. I put it in straight when I get in and let it sit until I'm done to set in.

Emergen-C- This stuff tastes like nasty crap, but I chug it post injections and it seems to help. Has electrolytes, etc. I felt like I recovered much faster than usual.

Ergonomic Computer Stand- Like I said, posture is key. I lay down a lot when I'm on the computer and I'm slowly transitioning over to sitting with this thing and I think it helps.

Amazing Grass Superfood Powder- It's hard to eat healthy when you feel like shit. This green smoothie supplement actually tastes pretty good. I mix it in my nutribullet with some OJ, water and 3/4 of a banana and try to drink one every day.

Paleo blueberry muffin and green smoothie. Who am I?

TENS Unit

Nike Roshe Runs- I have flat feet and these are supremely comfy.

Resistance Bands and Stretch Out Hamstring Strap

I'm gonna have a whole closet of shit soon.  It's nap time, bai.

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.