For those of us who’ve been living with ME/CFS or fibromyalgia or any other chronic pain condition for a few years, it might be hard to recall those early days after we were first (finally!) diagnosed.
But for those people who have just gone through that experience, you may be feeling a myriad of competing emotions, stirred together and topped off with a healthy measure of “What the heck do I do now?”
Here are ten tips to help you manage the confusion and overwhelm following a diagnosis of a chronic pain condition.
1: Understand Your Chronic Pain
While it’s unquestionably true that the experience of a chronic pain condition can vary drastically from person to person, you should take time now to find out what you’re dealing with, as soon as possible. Find out as much as you can about the “usual” progression of your disease or condition, as well as the range of symptoms and associated conditions you might expect along the way.
Knowing what to expect is important when you’re beginning a long journey with a new condition. You’ll find out soon enough that every new ache and pain and discomfort can soon make you nuts, wondering “Is this something to worry about? Or is this just part of my condition?”
If you can get as much information as possible at the outset, you can save yourself some anxiety, and make better decisions about your medical care.
2: Stay As Active As Possible
Study after study shows the benefits of light exercise for chronic pain patients. (Just this week, we hear news of a study showing adolescents with fibromyalgia experience less pain if they maintain some level of activity — Doctor’s Guide, via Fighting Fatigue.
Good choices for those living with chronic pain conditions include walking, swimming, yoga, and Pilates. Start with a one-on-one class, if you can — and if your area is lucky enough to have such a person, find a teacher with experience dealing with students who have chronic pain conditions. (Tip: Identify all area yoga teachers, for example, then call each studio and ask if any teacher there has dealt with your disease or condition, either personally or through students.)
For more on getting an exercise program in place while you’re coping with chronic pain, see my recent post “Exercise and Fibromyalgia: A Love/Hate Affair.”
3: Make New Friends Who Know What You’re Going Through
Support groups can help — but they can also hurt. Be careful with this one.
Here’s why: How we talk to ourselves about our pain has a definite, measurable effect on our perception of that pain. Given that we all have a right to put a voice to our pain, to tell our stories and have them understood, a support group would be a natural way to explore that process.
However, the catch is that when we all tell our similar-yet-different stories, we’re all susceptible to a perceived or real increase in pain.
So, it’s important to find a group that encourages healthful, positive ways of dealing with the disease.
This is not to say that you should tell your story only to Pollyannas, who will then tell you to smell the roses and just get moving or try this, that, or the other alternative treatment and you’ll be right as rain. That, to my way of thinking at least, would be worse than being hyper-aware of my pain, frankly.
What I am saying is this: look for a group that focuses on solutions — that allows its members to freely discuss their stories and rant and rave if they like, but that, in the final analysis, wants to help each other do better.
That’s real support. Otherwise, it’s just a bitch session over coffee and for that? I have my best friend.
4: Keep A Wellness Log to Track Your Symptoms
Get in the habit of keeping a daily record of your symptoms, together with any factor that can affect your experience of your pain. You can do this in a computer file — a plain text document, for instance, or an Excel spreadsheet if you’re feeling really ambitious.
Or you can get a simple flip-top reporter’s moleskine, which is what I use. Here’s an example of this model, from Amazon (affiliate link).
At a minimum, you should track:
- Your daily food intake
- All medications, including time and dosage
- All supplements you take, including time and dosage
- Your sleep — duration and quality
- Your activity level, including household chores and more formal exercise
- Any significant alterations in mood and stress level
- And, of course, your symptoms, preferably ranked on some sort of numerical scale
A note about pain perception scales: whether you use the traditional “1 to 10” or some other model, ranking your pain is not about minimizing it or defining it. Rather, it’s merely a useful tracking tool for you and your physicians to be able to see changes over a period of time.
For instance: if you experience a flare-up within 24 hours after you attend a particularly strenuous yoga class, and this continues to occur as a pattern, you can make an informed choice about whether a more slow-paced or restorative class focus might be more beneficial to you.
5: Talk To Your Family & Significant Other About Your New Journey Together
Get those close to you on board with the concept of this new experience as a marathon, not a sprint. It will affect all of you, and you should start now to cultivate a habit of open, honest communication with them about your condition.
Sit down with them for an extended “family meeting” and make sure you cover the following points at a minimum:
- Your diagnosis
- Your prognosis
- Likely symptoms you may experience — even if you’ve had them already, you need to make sure they understand, very simply, how you feel
- What they can expect from you
- What you need from them
Cultivate a “team approach” right from the start, and then when things inevitably get more stressful down the line, you’ll all feel more comfortable having an honest talk about it sooner rather than waiting until feelings reach the boiling point.
6: Monitor Your Sleep
Changes in your condition often manifest first in your sleep patterns. Note these changes on a daily basis in your wellness log, but also pay attention to your “sleep hygiene” — the practices and “rituals” you’ve developed, sometimes unconsciously, surrounding your nightly sleep.
In many cases, simple adjustments in your nighttime rituals can enhance the quality of your sleep. But first, you have to know what you’re doing now.
Take note of whether you read or watch television; what you read or watch; what music you listen to; the temperature of the water if you take a bath; how close to bedtime you last ate or drank anything; how often you get up to go to the bathroom at night …
These and other factors can indicate a potential problem with your sleep patterns, and you can then work to change those rituals to increase your body’s chances to heal itself while it rests.
7: Revise Your Expectations of Yourself
While I don’t advocate thinking of yourself as a victim or a patient, you will have to wrap your brain around a changed reality, at least for the time being.
Normally, by the time you reach a diagnosis, you’ve already had some period of time where you’ve experienced the pain symptoms. But it’s all too human to think “This is just temporary. As soon as I find out what it is, I can cure it and I’ll feel all right again.”
Of course, everyone hopes that’s the case. But the sad truth is that with most chronic pain conditions, we have no cures. We have treatments, and many of them may offer substantial relief.
But even the mere act of finding those treatments that are successful for your disease can be quite exhausting. So lower your expectations of yourself for awhile, while you get acquainted with your condition and your changed reality.
8: Clear Your Plate
Healing from a chronic pain condition takes an awful lot of energy. Don’t let self-imposed feelings of obligation diffuse that energy unhelpfully.
Think carefully about obligations you’ve incurred in the past, and ask yourself a hard question: If this obligation presented itself to me today, would I say “yes”, knowing it takes energy and time away from my efforts to heal?
Some obligations you can’t — and don’t want to — give up. Although child care is a taxing prospect even for the perfectly healthy, for instance, I’d never let my child live somewhere else, even though she has many relatives who love her dearly and would care for her if I couldn’t.
The truth, for me, is that caring for my daughter gives me as much joy and pleasure as it takes away in energy or time. So — again, for me — this is not an acceptable obligation to walk away from.
But a great many of your obligations can and should be renegotiated. Your priority must be your own health. Don’t just give lip service to this idea. Do yourself the honor of making this a true commitment, and let go of those things that impede your progress where you can.
9: Practice Radical Self-Care
Taking care of yourself is about to take on a whole new meaning for you.
Radical self-care is all about protecting yourself, knowing that when we put ourselves first, we are then more capable of helping others.
Radical self-care is a concept that deserves a more thorough treatment than a single mention in one post, and it’s a favorite topic of mine that I’ll address in more depth in future posts. For now, just be aware of what it encompasses:
- Eating the highest-quality whole foods you can afford and drinking the most healthful beverages only
- Taking total care with and paying perfect attention to your medications and supplements
- Dedicating sufficient hours to restful sleep in the most serene, comforting environment you can manage to create
- Daily meditation (and prayer, if it comports with your spiritual beliefs)
- Daily movement and light exercise — always honoring your limits
- Integrity in your commitments to yourself
- Managing your expectations of yourself
- Maintaining positive self-talk (see the next item in this article)
- Practicing impeccable hygiene on a daily basis
10: Learn and Change Your Inner Monologue
The words we use in our thoughts and the long-running “tapes” that keep playing in our heads have real, concrete effects on our physical lives.
Pay some cold, hard attention to the inner monologue you’ve got running now. Is it full of hopelessness and despair? Is it based on fear?
If so, welcome to the human race. It’s only natural, once the giddiness of finally obtaining a name for the mysterious beast you’ve been fighting for so long evaporates, to find yourself focusing on the end game and wondering just how long you’re going to have to struggle with this pain.
While it’s perfectly understandable, and you should absolutely acknowledge and deal with all your feelings, including the so-called negative ones, you should take care not to allow those feelings to become the source of your inner self-talk.
Take some time every day to counteract those normal feelings of anxiety and worry with positive imagery and messages.
Tell yourself the truth — you don’t know how long this will last but you are doing everything humanly possible to manage it and heal from it. You’re taking radical care of yourself, you’ve put yourself and your own wellbeing ahead of everything, you’re in the process of renegotiating obligations that prevent your healing, and progress is being made every single day in the fight against chronic pain.
Let that be your gift to yourself. It really does help keep your energy and your spirits up — and yes, it does make a difference in how you manage and deal with your chronic pain.
To all my fellow old-timers, what did I miss? What advice would you give the newly diagnosed? Leave your suggestions in the comments!