Dealing with Fatigue, Frustration and Fear

As published on Pain News Network (www.painnewsnetwork.org) on August 6, 2015.

Sometimes it just gets to be too much; the pain, the fatigue, the frustration and the fear. 

Wondering if things are ever going to get better.

Wondering if there will ever be a day without pain.

I have always thought of myself as a stubborn and determined person.  When I was four years old I had to wear a cast on my right leg to help stabilize my arthritic ankle.  Even at four, I didn’t let that stop me from keeping up with my twin brother on the playground.

While I was in the middle of my j-pouch surgeries I was determined to finish my doctorate degree.  I finished my dissertation and two weeks after my second surgery, while in pain and out of it because of the pain meds, my mom drove me to L.A. so I could defend my dissertation and get that “doctor” title that I had worked so hard for.

Three months ago I hurt my right knee.  After two rounds of prednisone, physical therapy, rest (sort of) and X-rays, my rheumatologist still doesn’t know what’s wrong and I still have pain every day.  Since the injury, and against the wishes of my husband to stay home and rest, I have continued to go to the gym so I can at least get a kick ass arm workout.

Why have I done all of these things?  Because I’m stubborn.  And I’m determined.  I try my hardest not to let the pain stop me from doing the things I want to do.  I try to be as normal as possible, because I hate feeling like I can’t do something and I hate for others to think that I am weak, even though I know that I am not.  I also try to take advantage of each day as much as I can because I never know when or if I will be in the hospital again, when or if I will have to have another surgery, or if my arthritis will get worse.

But sometimes it just gets to be too much.  Dealing with pain every day is tiring!  And dealing with the fatigue that comes along with the pain is tiring!  In addition to that, the frustration and fear that things will never get better and that they could possibly get worse can be incredibly overwhelming.

So here is what I do when things get to be too much.  I hope some of these tips will help those of you reading this:

• I take a little time for myself, even if it’s just five minutes.  If I am at work, my favorite thing to do is close my office door, open YouTube on my computer and put on some yoga music.  Then I sit back, close my eyes and take deep breaths.  This does amazing things for my mind and my body.
• I try to remember what is good and positive in my life: my son, my husband, my family, my friends.  While I still have pain, there is still so much I can do.  It helps to focus on what I can do instead of what I can’t do.
• Get outside.  I love the beach.  It does something for me that no other place can.  But I can’t always get there, especially with family and work demands.  If I can, that’s my preference, but if I can’t, even just sitting in my backyard can do the trick.  Fresh air and vitamin D are proven mood elevators.
• I write.  Writing about the pain, the frustration and the fears can be very therapeutic.  Have you ever wanted to vent so badly about the way you are feeling but don’t want to bother anyone with it?  Writing down exactly what you would say to someone else is a great alternative.
• I focus on a goal and plan on how I am going to reach it.  This helps me to focus on something other than my pain and fears.  It can be a big goal (passing my final licensing exam) or a small one  (doing as much as I can this weekend with my son despite my knee pain).
• Sometimes I just have to take a rest and realize that it is okay.  This is really hard for me to do but sometimes it is necessary.  Those of us with chronic pain can’t be expected to do everything and we can’t expect ourselves to do everything. 

Balance in life is key and part of that is taking care of ourselves and letting go of the guilt that comes along with it.

When Nobody Believes You

As published on Pain News Network (www.painnewsnetwork.org) on April 30, 2015


“It’s all in your head.”

“Your doctors are wrong.”

“You don’t really feel as bad as you say you do.”

“You must not really be in that much pain because you look fine.”

These words are far too common in the ears of chronic pain patients.  They can make one feel isolated, alone, and as if nobody cares.

One of my patients told me the other day, “My husband doesn’t believe I’m in as much pain as I say I am.  He thinks it’s all psychological.”

A week earlier, a friend told me, “No matter how many doctors and specialists I have been to, my family still does not believe my diagnosis.  They think it is wrong.  I feel like I have to hide my pain around them.”

I listen to story after story from patients and friends with chronic pain stating the same thing: that family members, friends, doctors, co-workers, teachers, etc. do not believe they are in as much pain as they say they are. Often it’s because they look fine on the outside.
 

 

They have told me they feel like they are whining about their pain, that people just brush them off or that they feel guilty for even talking about their pain. 

They ask me, “What’s the point? I feel like nobody believes me anyway.”

No matter how many times I hear these stories, it still angers me.  Chronic pain is not something that anyone should feel like they have to convince another person of.  It is not something to feel guilty about and it is not something anyone should feel like they have to hide -- especially from those closest to them.

Unlike having diabetes, cancer or a broken arm, most people do not understand chronic pain and the effects it has. And many who think they understand are misinformed.

What they often don't understand is that chronic pain sufferers don’t always look sick.  Because their pain is chronic, they have learned to go on and live their daily lives to the best of their ability.  Just because you can’t physically see someone’s pain, that doesn’t mean it is all in their head and it doesn’t mean they are fine.

And being told that their doctor must be wrong or that they should hide their pain only makes things worse.

When someone is diagnosed with chronic pain, they want more than anything for that diagnosis to be wrong.  However, more times than not, the diagnosis they receive, especially if they have been to multiple doctors, is correct.  After the shock and denial has worn off, that patient, more than anything, is going to need support and acceptance, not criticism and disbelief.

Being diagnosed with a chronic condition is life changing, even for the strongest individuals.  It means finding a new normal, contending with things that are unimaginable and going through life feeling like those closest to you will never understand.

It means trying to make sense of this new person they have been forced to become and the new reality they are now living.  All of these things could be managed just a little easier by hearing the simple words, “I believe you.”

The Sleep-Pain Connection

Sleep and pain are quite connected.  Disturbances in sleep patterns are either a symptom or cause of a problem.  With chronic pain, it is often both a symptom and a cause of increasing pain.

When I first began working with chronic pain patients I read about an interesting study where “normal volunteers” were awakened throughout the night over successive nights.  They were awakened such that their REM sleep was disturbed each time.  After a few nights, the volunteers developed symptoms of a chronic pain disorder called fibrositis.  Fibrositis is characterized by a variety of symptoms.  The primary symptoms are painful patterns of muscle points in the neck, shoulders, arms, back and legs and a feeling of fatigue.  Headache and related problems often accompany these fibrositis symptoms.

The neurochemical serotonin is involved in many things, including sleep, digestion, mood and pain.  We also have natural pain relievers called “endogenous opioids”.  Changes in serotonin levels participate in lowering the levels of these natural pain relievers which allows an increased reception of pain throughout the nervous system.  This pattern creates a change in sleep and mood.

After learning about this sleep-pain connection years ago, I made it a point to concentrate on sleep hygiene with all of my chronic pain and chronic illness patients.  If you are having difficulty sleeping, try some of these sleep hygiene techniques to see if they help you get a more continuous, restful night sleep.

During the Day:

• Remain as active as possible during the day without overdoing it.
• Avoid naps unless necessary for pacing.  If naps are necessary, keep them to 20 minutes maximum.  The more you sleep during the day the more difficult it will be to sleep at night.
• Limit caffeine, especially in the afternoon.
• Participate in regular exercise – whatever you can do: walking, swimming, etc.
• Take a hot bath or shower to relax yourself.
• Keep work out of the bedroom.  The bedroom should only be used for sleep and sex.
• Get out of the house and do something, even if you don’t have anything planned.

Evenings and Bedtime:

• Establish a bedtime routine: brushing your teeth, washing your face, changing into pajamas, etc.
• Engage in a relaxing activity such as reading or watching TV for a set amount of time.
• Avoid caffeine in the evening.
• Stop drinking fluids at least an hour before bed to avoid waking in the middle of the night to use the bathroom.
• Prepare for the next day.  Set out your clothes, write down things you need to get done, concerns you may have, etc.  That way, these thoughts won’t keep you up at night.
• Try some light stretching before bed.
• Go to sleep and wake-up at the same time each day.
• While in bed, engage in relaxation techniques, such as progressive muscle relaxation (if it is not painful for you), deep breathing or pleasant imagery.
• Keep your bedroom dark, quiet and comfortable. 
• Do not focus on sleep.  Thinking about how you need to get to sleep or worrying about not being able to sleep will only prevent you from sleeping.  Instead, focus on relaxation and deep breathing.
• Use thought stopping to keep yourself from thinking negative thoughts.
• Use a heating pad or ice pack to help relax your muscles.

Interrupted Sleep:

• Use relaxation techniques to help you get back to sleep.
• Stretch or change positions.
• Use whichever techniques helped you get to sleep in the first place.

Sweet dreams!