My Pain Diary

One of the characteristics that chronic pain sufferers share is the willingness to try anything within reason to eliminate, relieve, or manage  their pain. This may lead to an eclectic collection of over the counter and prescription medications, some or none of which may be effective; pain relieving rubs, creams, oils, and gels of dubious effect; and gadgets and gizmos that may or may not  live up to their manufacturers' claims.

I confess, I have my share of pain pills, preparations, and pain relief tools, the most recent of which is an iPhone app called My Pain Diary: Chronic Pain Management, which is about the most helpful app I own. It's super easy to use, and works just like its developer says it should.  Let me tell you more about it.

Developed by a man named Damon, who lives with RSD/CRPS (Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome), the award-winning My Pain Diary is completely customizable and allows you to keep track of several pain conditions at once. Even better, you create your own list of conditions rather than pick from a pre-selected list. You also create your own lists of:

•  trigger factors
•  adjectives that describe your particular pain
•  the specific parts of your body affected
•  the remedies you use to gain relief 

Tracking the intensity of pain is easy, either by using numbers (0-10) or faces (emoticons). 

To track even more information, you can add notes at the end of each entry.

Like pictures? You can include them in your entries.

And, if you suspect the weather may be a catalyst for pain, you can keep track of it, too.

The app also lets you graph your data, which allows you to analyze your pain history and look for common patterns.

You can  also create a written report, which can be shared with your doctor and other pain management practitioners via email or print.

All this for $1.99.

I could go on with more features and benefits, but I'll let you look into for yourself. My Pain Diary:Chronic Pain Management

Spring Fever

Every once in a while I get one of those days, a day without pain, when I can almost forget about the TOS.  Today is one of those days. It's my day off from work.  I completed all of the tasks on my to do list.  I gave an hour to the food pantry at  my church. I went out for lunch with my husband.  I'm writing this post.  And is it a coincidence that today also happens to be a near spring-like day in early March?  Temperatures in the low 60's, mild breeze, sunshine.  Maybe it's just a touch of spring fever, but I'll take it, and revel in every moment. 

Funny thing about chronic pain.  When it's got me in its grip, I can't do much of anything.  I do only as much as I can of what's really got to be done, and let the rest slide for a better day. Then the better day comes, and I feel like taking on the world, but I hang back, because the threat of spiralling back down into the coccoon of exacerbated pain and all it requires nips at the edges of my comfort level.  Just one wrong move, one minute too long at the keyboard, one overly complicated recipe, can be the catalyst for a flare-up, and I'm back on the couch with the heating pads, the TENS unit, the NSAIDs. 

So although many people may see a day like today as an ordinary day, I see it as a gift, precious hours and minutes when I am free to be the me I want to be, the me I was before the TOS.

Take My Hand

TOS is full of surprises, such as the one in the picture. Last night, while I'm sitting on the couch, watching a movie with my daughter, I look down at my hands and see this: the left hand is sickly white; the right hand is swollen and red. The reason I looked at my hands is because my left hand was freezing, and that's what usually happens with TOS - very cold, sickly white fingers on one hand (or both), maybe just one finger (or five, you never know), occasionally juxtaposed against the other hand, with fingers that might be red and swollen (as above), or simply blue and scary, because blue body parts are a sign of poor circulation, lack of oxygen, and possible danger.  This happens frequently enough that I no longer panic when it does, but it sure shocks other people who catch sight of it. And no, it's not Raynaud's Phenomenon, which can occur with TOS.  I saw an Independent Medical Examiner for Worker's Comp several times who insisted I had Raynaud's.  I finally had a full rheumatological workup and the finding was TOS, not Raynaud's, was the cause of my discolored fingers. So, the colored fingers can show up at any time, during any activity, but often when I'm resting, and even more often when I'm working on a computer (like now, and the right hand is freezing), because the thoracic outlet is constricted by the position of my arms.  Changing position or activity will usually make it go away, which is why this post ends here.

The Spoon Theory

A TOS friend led me to this excellent essay about how it is to live with chronic pain.  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Shock & Awe

So little is known about Thoracic Outlet Syndrome (TOS) that when I tell someone  I have it, I find myself launching into a long-winded, clinical monologue about causes, and symptoms, and treatment, and even I get bored.  I was a nurse for 15 years, and read medical records for a living, before I heard of it for the first time, when my doctor suggested it might be the cause of my unrelenting arm pain and the nocturnal numbness and tingling in my hands. TOS is so uncommon, most doctors have not heard of it.  It's also a diagnosis steeped in controversy, so when the doctors have heard of it they may or may not believe it exists. Try explaining this to your spouse, your family, friends, employer, and coworkers.  "I'm in agony because I have this medical problem that may or may not exist, which you've probably never heard of, and I need long-term and expensive treatment that may not help much, and, guess what? I probably won't be able to work anymore."  Yeah, this goes over real big.

Shock and awe are just two of the emotions I've experienced over the last five years of living with TOS.  I'm in shock, because I can't believe this has happened to me.  And I am in awe, because it has taken so much from me.  TOS changes your life.  It changes the way you see yourself, the way you do things, your hopes and dreams for the future, your day-to-day life.  I deal with it every minute of every day, managing symptoms, managing insurance benefits, managing how I make a living after I was forced to give up a good job with great benefits. There are good days, and sometimes there are only good hours.  I take each as it comes, plan for the best, but prepare for the worst.  It's all about respecting my limitations, knowing when I can most likely spend time on my computer without causing a flare-up of symptoms, or knowing when to spend the day quietly reading and watching TV while huddled with a heating pad and some pain medication on board.  I count my blessings.  I have a husband who's my rock, the best 16 year-old daughter around, a great family, good friends, a lovely home, and a part-time job I enjoy.  Life is good.  My faith in God has been renewed these last years, when I don't know what I'll be doing tomorrow, but I do know that God has something good planned for me. 

Living with TOS is not unlike living with any other life-changing medical problem.  You make concessions, you rewrite your life plan,  you try to come to peace with the new you.  It is easy to lose hope, to wallow in the misery, to give up.  But even if I have not yet been fixed, and may not ever be fixed, I refuse to let the occasional shocks wear me down, and I intend to enjoy my awesome life.