Tracking Your Pain: How to Effectively Communicate Your Pain Symptoms

After 8 years of chronic pain, I consider myself something of a pain-connoisseur. I've tasted the nectar of throbbing joints, whiffed the bouquet of stabbing stomach pains, and drank in all manner of aching awfulness. During those years, I've learned that while our pain may be subjective, a good description can help explain your situation to medical professionals and avoid miscommunications. Maintaining a consistent way of describing your pain can be a great way to assess how well a new treatment may be working, or showing any trends in your illness.

So how do you explain your pain symptoms to your doctor? One of the best ways is through the use of a pain journal where you enter information about your pain at some general times every day (ie morning-afternoon-evening) Here are some basic things to keep track of in your pain journal to help explain your pain to a medical professional.

1. When noting pain's intensity, start on the same playing field, and start on a good one. Pain is one of the most subjective experiences in the world. To try and quantify pain in a more objective way, medical professionals usually use a standard "pain chart." My doctor's office has the standard Wong-Baker smiley-face 10-point chart for pain.  

A quick look shows you that it makes absolutely no sense. If it hurts a little, why is he smiling? Does #4 look pained, or puzzled? And certainly, my face doesn't always read like a little smushed up ball even when the pain is "hurts a whole lot" intense. If my doctor and I are even playing on the same playing-field with this chart... the playing field stinks. I find the more objective Mankoski Pain Scale has a more accurate description of what my "pain level" actually feels like. I keep a copy on the back of my pain-journal, and make sure I print one off for each doctor to keep as well.

0 - Pain Free

1 - Very minor annoyance - occasional minor twinges.

2 - Minor Annoyance - occasional strong twinges.

3 - Annoying enough to be distracting

4 - Can be ignored if you are really involved in your work, but still distracting

5 - Can't be ignored for more than 30 minutes.

6 - Can't be ignored for any length of time, but you can still go to work and participate in social activities.

7 - Makes it difficult to concentrate, interferes with sleep. You can still function with effort.

8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you pass out. 

© Andrea Mankoski 

 2. Notice the qualities of your pain, and describe them consistently. Pains have unique characteristics which make them distinct from each-other. For example, the stabbing pain of a headache is different from the shooting burn of nerve pain. Knowing words that help describe the quality of your pain can help doctors decide what might be causing it. Here's a good "glossary" to memorize. When you're experiencing pain, go to your glossary and try to describe what you're feeling: aching, cramping, pounding, sharp, throbbing, stabbing, shooting, creeping, dull, electric, burning, freezing, spasming, radiating, penetrating, crawling, sore, tight.

3. Record the location of your pain (and use tech to help!) Knowing where the pain is is tantamount to diagnosis on your doctor's part. One way to really show doctors what's hurting is to take a photo of yourself (or find a photo of a basic anatomical illustration) and shade in the parts that are causing pain. Shade in areas of intense pain more darkly. If the pain is radiating, use arrows to show which way it travels. Note whether the pain is superficial (near the skin) or deep inside.

4. Be cognizant of what makes your pain change. Pains respond differently to the daily wear we put our bodies through. Noticing how the changes in your day effect your pain can help pinpoint it's cause.  Does your pain get better or worse with activity? Does your stress level correlate with your pain? Do certain activities like climbing stairs or reaching overhead aggravate your pain? Do things like showers, stretching, or a full night's sleep makes your pain level decrease? More broadly, notice if there certain weather patterns that correlate with better or worse pain.If your pain lets up at certain points, note the duration of time when you're in pain, and the duration of time you're pain free.

5. Make your pain human by relating it to your life. Pain is such an abstract concept that it's often easier for doctors to think in terms of what's concrete, and the way your pain interferes with your life is a concrete measure. If you're having trouble with tasks of daily living like doing laundry, climbing stairs, or personal grooming, make note of that. If it's interfering with your family life or your work responsibilities, mention how.

 

Communication Breakdown: Tips for Fighting Through The Telephone Jungle

When acquaintances ask me what I do, I often say that having a chronic illness is a full-time job. Unfortunately, part of that full-time job is hours upon hours spent talking on the telephone while attempting to navigate our bureaucratic medical system and arrange care. Month after month, the phone bill shows more time spent trying to make appointments with doctors than time spent chatting with friends. And sometimes talking on the telephone can be a very flawed system for relaying information. As you get patched back and forth to receptionists, nurses, and other office staff, information can be missed or misheard, and it can have an impact on your health care outcome.

Recently, I had a misunderstanding with the nurse at my doctors office; she didn't ask/seem interested in my pain level, and upon finding out that my MRI was negative for avascular necrosis, promptly canceled my follow-up appointment because she figured there was nothing wrong. It got figured out in the end, but the miscommunication caused a lot of stress, and also got me thinking about specific protocol to follow to make sure nothing like this happens again.

1. Find our who you're talking to. This is a must-know in case you have any trouble after your phone call. Most hospitals have a fairly good policy in place for staff giving their name and job-position when on the phone, but if you come across someone who doesn't offer their name, don't be afraid to ask. Ask for a name every time you get patched through to someone new, and right the names down if you're prone to forgetting. That way, f you need to call back you can ask for the people that you talked to previously, follow up with any questions, or file a report if something is handled unprofessionally.

2. Take notes. If you recieve an unexpected call from the doctor's office, it's not unreasonable to ask them to give you a second to grab a note pad. Jotting down notes about what you're told as well as what your replies are helps stimulate a more productive conversation. You'll know when you haven't mentioned something, remember the information relayed to you, and can use your notes to gather your thoughts as the conversation progresses. Also, keeping a pen and paper handy helps guard against forgetting what date and time any future appointments may be.

3. Go high-tech... Be a spy! Many phones have features which allow the owner to record voice conversations, and I'm a huge proponent. Recording a conversation keeps both parties honest-- and like taking notes, recording allows you to go back and process. The caveat is that some states require you to notify others when you're recording, so if you live in one of these states, make sure to notify the person you're talking with.

4. Check back. If you have a conversation that leaves you confused or upset, call back or visit the office. That way, you can confirm any instructions, ask all the questions you might have, and air any grievances or concerns you may have. If nobody knows that you're not on the same page, problems unfortunately will go ignored. We must be our own advocates, because there's nobody else to straighten things out.

5. Know when to give up and talk to someone else. Some people are... bitchy. There, I said it. Some people are mean or ignorant or generally rotten, and they do not deserve the stress they'll impose on you. If you keep talking to one person and are having many miscommunications, or feel belittled or ignored, stay calm and politely ask to talk to somebody else, or try calling back a different day. Because our emotional affect is blunted on the phone, tempers can flare quickly. Because it's your health on the line, you have every right to request somebody else. Difficulty with language barriers, accents, and enunciation can also be reasons to ask for someone else. Bottom line is, they are running a business, while you are running your life.

The Pros and Cons of Dr. Google

Ahh, Dr. Google, the one doc who still makes house-class, no symptom too insignificant to warrant careful consideration. One click, and all your symptoms are run through a myriad of databases capable of telling you virtually anything and everything that might be going wrong. But should you Google those symptoms?

I injured my hip in aquatic physical therapy over 2 months ago, and it hasn't healed. X-Rays haven't revealed any dislocation or fracture, and my doctor recently suggested a remote possibility of avascular necrosis of the hip. He explained that, basically, it means that your bone is damaged and isn't getting enough blood, so it stops building up. I left that office that day with a choice to make: do I go to the net and look it up? There are pros and cons to using the great resource that is the hospital of the World Wide Web; here are a few that I've thought about.

Pro's and Con's of Dr. Google

Pro: Knowledge can help you achieve a better differential diagnosis. A differential diagnosis is the list of all possible diagnoses that might be causing the symptoms you're experiencing within a reasonable doubt. If you go online and look up a diagnosis that's been suggested and it sounds totally off-base, you can help your doctor eliminate it from your differential diagnosis. If Dr. Google leads to a disease that fits your symptoms well, you could talk to your doctor about that disease. Bottom line, sometimes a little extra knowledge is helpful in communication with your doctor.

Con: Knowledge can freak you out. There are a ton of horror stories online about missed diagnoses, treatments that backfired, horrible prognoses from illnesses, and general medical malady, and they can drag you down. I'm not one of those people who emphasizes the role of mindfulness and chronic illness, but I believe that a negative, terrified attitude can only make a poor health situation even worse, and it's hard to filter out all the negative information online. A good case in point are drug side-effects: many effects happen to only a handful of people on the medication, but reading them may scare you away from trying it. An adage to remember is: what has been seen cannot be unseen. 

Pro: Internet research can help you feel proactive. When you're ill, the world starts circling around you in ways that are completely out of your control. Symptoms go un-managed, and it can take months to get in to see a doctor to figure out the problem. Turning to the internet gives you something to do in the meantime, and sometimes advice on new home-remedies to try (or those to stay away from.) It's proven that a feeling of control helps people cope better with challenging situations, and using the internet helps you feel more in control.

Con: Not everything you read is true. Does that really need to be said? But when you're hurting, it's easy to latch on to the hope of some miracle diet or new restorative snake-oil, and it's easy to get exploited. Some people share information that is blatantly false, knowingly or not. And moreover, not everything you read on the internet is true for you. Just because something on the internet has convincing results doesn't mean it will work for your specific situation. Just because a diagnosis sounds convincing doesn't mean it's what you have. A hefty dose of skepticism is always necessary. 

Pro: The devil you know is better than the devil you don't. For me, after years of undiagnosed chronic illness, this is always what keeps me looking, motivated, curious. It's more comforting for me to do a lot of research and be able to prepare myself for a number of different things going wrong than to know something isn't right with my body but choose to ignore it. This is a personal choice. For me, the agony of not knowing outweighs the agony of preparing for the worst.

Chronic Pain Fashion Part 2: Fabrics That Aren't Evil

In my last post about chronic pain fashion, I talked about ditching the pants. But another integral step of comfortable clothing when you feel like crap is finding the type of fabric that makes you feel best. Fabrics that cling too tight and squeeze, itch, or don't breathe can make you feel even more awful when you're flaring; some can even promote symptoms like rashes and fevers. he best way to try out a variety of fabric is to go to the local secondhand store; wool, silk, cashmere and other luxurious fabrics become affordable, but you can also run your hands over a lot of polyester crap and figure out what that feels like too.A lot of this is about personal choice and trying stuff out for you, but here are some tips I've learned about various fabrics. 

Cotton: Cotton is my standby fabric because it's so versatile. It breathes really well, which is a huge concern for those of us who suffer autoimmune fevers and hot swollen joints. It doesn't cling, it drapes well across the body and  it moves with you-- important when you've got limited range of motion or when you use mobility devices. There are a bunch of different types of weave pattern for cotton from see-through-beach-cover-up to chunky-sweater, but essentially the clothes made of cotton are fairly lightweight and soft to the touch, so it's a great fabric for all manners of layering. The only drawback I've found is that cotton shrinks.

Wool: For outer-wear, wool is excellent. It's super warm, but it still breathes. For that reason, it's really great for layering. Being cold makes my joint pain and stiffness worse, an wool is excellent for keeping me toasty but not making me roast. Wool's a little stiffer than cotton, but overall still has excellent movement. The one downside can be that wool can be itchy. Really itchy. This is combated by either buying brushed wool (hello, cashmere!), or by strategic placement of layers between you and the wool. For this reason, many things made out of wool come lined in silk. Speaking of which...

Silk: Not much trumps the luxury factor of silk, and treating yourself to garments made out of such a soft material is a great pick-me-up for days when your illness leaves you feeling like crap. Silk blouses and scarves are soft and flowey, great for if you're dealing with skin issues, or if you just want to be cozy with something soft. Silk dresses and nighties are also wonderful, as both make you feel like you're wearing nothing.

Man-Mades (aka, polyester, nylon, lycra, etc.): Ahh, the dreaded petroleum! I try to stay away from man made fibers as much as I can, for a few reasons: it doesn't breathe, it clings all wrong, and it doesn't allow for good body-temperature regulation, which can leave you feeling like crap. Unfortunately, it's is really hard to avoid. As a general rule, a little can be okay, but you don't want it to make up the bulk of your garment.