By Pat Akerberg, Columnist
Millions of us have gone through an exhaustive search involving multiple physicians and tests -- and then waiting and worrying to understand what causes our pain.
When first hearing our diagnosis, there’s relief in finding a name for our suffering. We reason that if our condition has a name, then it must have a cure or treatment. Sometimes things do fall into place that way.
But if they don’t, the uncertain path ahead creates a fear of the unknown and raises many worrisome questions that beg for answers. That was my case.
Here are some lessons that I’ve learned along the way to tame the fear and provide some proactive direction:
Don’t allow fear to take over. It has been shown that stress can aggravate an already painful condition. Worse, underlying anxiety has a way of undermining our judgement and clouding our decisions, just when clarity is most needed. Some medications can even have that effect.
Find an advocate. You may be off-kilter, so it’s wise to enlist a friend or family member to accompany you to appointments. He/she can be an invaluable resource who can take notes, help with recall, and remind you what to ask.
Join a support group. There’s an irreplaceable strength gained from others’ sharing their similar experiences, support, and friendship. Giving help and receiving it offers a two-way chance to find meaning and purpose along the way. My facial pain support group – www.fpa-support.org – is often a lifeline for me.
Slow down. Many of you may be working, have families to raise/support, live alone, etc., and have a heightened sense of urgency to get your pain under control quickly. Speed can cause hasty choices that can’t be undone before the risks of all options are considered.
Become informed. Take an active role in your health care by doing a solid amount of research (see PNN's patient resource section here), networking, and physician interviews. Prepare questions beforehand and don’t hold back. If your questions aren’t received well, that’s a red light.
The decisions you make will impact your life going forward. I assumed there would be responsible, committed after-care with my brain surgery. When serious complications happened, I learned (too late) that was not the case. Had I clarified upfront, my choice in surgeons would have been different.
Learn how to describe your pain. Assist those treating you by using specific pain terms that describe yours, such as: stabbing, shocking, burning, tingling, pins and needles, numb, intermittent, constant and describe where. It helps to keep a daily log of your pain patterns.
Current medical practice relies on the 1 to 10 scale for pain with frowning and neutral faces. Many of us feel pain way beyond a 10 and need to explain that respectfully.
Looks can work against you. If you make the mistake I did (holding onto some vestige of control) by wearing make-up and fixing my hair – beware. Unfortunately, many doctors judge us by visual appearance and if they think we look “good,” disbelief or downgrading of our pain and need for medications may follow. This can apply to some family members and friends too.
Don’t act without a clear diagnosis. Different treatments or medications have varying degrees of success, depending on your diagnosis. Specific protocols for your particular diagnosis need to be followed.
All too often I’ve observed individuals with trigeminal neuralgia who aren’t clear about their diagnosis, anatomy or specific pain, but who still prematurely consider having surgery or other destructive nerve procedures done that they regret later.
Get more than one opinion. Research the experts nationwide who have proven track records. Many surgeons or physicians will consider phone consults. So don’t limit yourself solely to local resources. If I had a do-over, I would have gone out of state.
Don’t wait to do this until you are at the end of your rope. You will also need to investigate what your insurance will and won’t cover. Pay attention to the odds of those things that research indicates are more successful and ask others about their experiences and any complications involved.
One size does not fit all. You can’t automatically apply someone else’s experience to your situation and assume it will be the same. We each have different genetics and medical histories. Results vary individually.
Consider complementary and alternative medicine. If initial medications don’t work, don’t assume surgery is next. There are many combinations to try along with other alternative options. Alternatives can involve upper cervical chiropractic (a unique specialty), acupuncture, cranial-sacral therapy, massage, supplements, and nutritional approaches.
The downside may be some out of pocket costs. The upside holds potential benefits with very low risk.
Trust your instincts. This is the trusty combination of your intuition and innate instincts (or gut feeling) known as the mind-body connection. You know yourself better than anyone. If in doubt, wait until you reach an inner peace or something else emerges.
Begin with the least invasive, low risk options first and invasive last.
Adjust your expectations. Chronic pain alters our lives and that of our loved ones. Some people will have empathy, some may not believe you entirely, others will be amazingly supportive, and others may be pretty disappointing.
It’s not your fault! When you can’t work, get out, drive, or suffer other limitations, it can be very isolating. We can become be our worst critics adding insult to injury. Find healthy distractions, one of mine is coloring books for adults.
Express yourself. To counter blue moods, reach out even when you don’t feel like it. Learn to ask for help. Holding it all in undermines our psychological and emotional well being. A few close mutual relationships with people who care and try to understand are good medicine.
Thankfully, our friends and family help us to cope one day at a time, believe that something better is possible, and know that we are not alone in this learn-as-you-go journey.
Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.