Peripheral Neuropathy Support Group
 of the
DC Metro Area

No Cure
No "Race for a Cure"
But Hope, Advice, Info
      Mutual Support &
      Being Heard?
Yeah, We got that.

DC Peripheral Neuropathy Support Group

<meta name="google-site-verification" content="rnynLe2vn0ze14KzMXKQbTDqutSiL2j-WGRUn6hJxUA" />

Blog

My Shifting Perspective on Pain

Posted by mandlfoxworth on October 30, 2017 at 12:35 AM

For the past six months my wife has been fighting a back injury. There have been ups and downs, progress and relapse. Currently she is in the recovery-from-relapse phase. Discouraged. Hopeful. Determined.

 

But mostly pain. Constant pain. Her struggle with this pain has driven me to reconsider my attitude towards pain and pain relief.

 

Nature equipped us with a pain system. "It only hurts when I xxx." Response: "Don't xxx!" We would not survive childhood without these warning signals sent by of our nerves to our brain (and other parts of our nervous system).

 

If I stub my toes I can do something. I can (1) wait for the toes to heal and (2) learn to avoid stubbing them again. [Personally, I do other things like yelling and crying, but those are just aspects of "waiting".]


Our perception of pain is mostly in our head. My brain tells me that my toes hurt. But it is not my toes that hurt - pain is my head's interpretation of signals. As long as my PN-afflicted toe nerves are alive and to some degree functional, they will keep sending their distress calls. I don't know how to stop them, though the pattern seems to change sometimes. But I can do something about how those signals are handled by my brain. More importantly, I can do something about how those signals affect the rest of my life.


My toe pain starts at zero and steadily builds during the day. Since it seems relatively minor (compared to what others describe) all I do is keep my brain busy with other activity. I work on this web site and PN related volunteer work. Housework, cooking, eating, talking, arguing, exercise, shopping, planning, volunteering, TV, radio, visits, Skype. We listen to recorded courses as we fall asleep at night. The "pain signals" are not gone, just less relevant. Pain has increased considerably over the years, but it has not had much functional effect. In the future, pain may play a larger role in constraining my functional capability, such as requiring medications with serious side effects. Pain can force trade-offs. For me, for now, that’s not the case.


My wife has migraine headaches. She has learned ways to work through all but the very worst of them. Her back pain is not worse than migraine, but her treatment options are more limited. She must physically rest to allow the inflamed spine tissue and nerves to recover. She must keep her physical therapy routine. She cannot make as much use of her normal "keep busy" techniques to redirect her brain away from the pain. The human spine is "evil" in the sense that it has practically no feedback nerves to warn us before we do something harmful. She's had to learn from painful experience what her activity limits are. She's had two relapses during this six months caused by exceeding those limits. Pain is now in the center. She's found that playing a certain computer game helps. She can focus almost all her attention on that game and the backpain fades into the background. The game helps even when she has both migraine and backpain. This treatment is keeping her sane while her back recovers. Her world has become much smaller as she pours most of her energy into recovery. And recovery will come.


In principal, treatment for chronic pain can focus on two aspects. Stop the pain signals or change the effect those signals have on the way we live our lives. I hope I'm wrong, but I know of no treatments of the first type for PN-related chronic nerve pain (unlike my wife’s back pain which we expect to decrease considerably). There are many treatments of the second type (such as my activity routine and my wife's computer game).


Ever since her migraines stated as a teenager, my wife has tried many forms of relief from this trick her brain plays on her. They all have limitations.

• Activity, “fighting through the pain”, has proved the most reliable. Distractions are important. At home, she plays the radio or runs the TV as she works. But some activities are impractical or dangerous when pain is severe.

• My wife’s computer game leaves her with dry eyes because she fails to blink enough. That’s a risk to her vision.

• NSAIDS, like aspirin or ibuprofen, can help, but heavy use led to “acid reflux” that has taken years to correct. NSAIDS are now basically unusable for her.

• Opioid meds quickly lose their power and require increasing doses. They led to addictive dependence that was difficult to shake. She now lists codeine as an “allergy” to avoid automatic prescribing by doctors. Surgery becomes a very careful dance.

• Self-hypnosis was very effective. It needs constant practice to retain and somewhere she lost that ability. She may try to reacquire it. “Relaxation recordings” attack the same therapeutic path but are less effective for her. Both are time-consuming and prevent other concurrent activity. For me? I couldn’t make it work.

• Acupuncture was very effective and lasted longer than one might suppose. But not something she could do on her own and impractical and unaffordable given migraine frequency and unpredictability.

• Special meds, like Topamax (topiramate), had significant side effects (Patients refer to Topamax as “dope-a-max” because of its dulling of intellectual acuity). Besides that, the brain adapts; its effectiveness steadily faded. Pharmacy companies are excited about potential profits from new research on more targeted migraine drugs. Patient caution is merited.


We are all different. Placebo effects are among the most powerful ever seen. If an "unproven" "snake oil" treatment works for you, give thanks. If a treatment that others swear by doesn't work for you, it may "really work" for those others. The evidence for pain treatment efficacy is unconvincing because the problem is hard, the treatments are legion, the patient population is diverse, the brain adapts and research money is scarce. The treatment that works for you will be one that allows you to function and pursue other life goals despite the pain. For most of us with PN, "being pain free" is unrealistic and irrelevant. We just want a compromise that works.

Mike Foxworth

 

Categories: None

Post a Comment

Oops!

Oops, you forgot something.

Oops!

The words you entered did not match the given text. Please try again.

Already a member? Sign In

1 Comment

Reply mandlfoxworth
9:57 PM on November 2, 2017 
Our member Mei Leng Lau wrote to remind me about QiGong (there are several alternate spellings). Tai Chi is becoming a familiar term, but QiGong is a class of movements that can (among other things) help us relax and focus. QiGong movements are almost always taught along side Tai Chi. They were in integral part of the demo training we took this past Summer. While Tai Chi has been called "moving meditation" it is the QiGong movements many people rely on for daily relief. Personally, I find myself frequently using "sinking the chi" to calm myself in tense situations. Many movements can be done while standing, sitting or lying down and some are thus available to virtually anyone. Anyone who has tried meditation (believe me, i really tried when I really failed) knows that breathing is a big part. In QiGong the movements bring along breath control as a natural side benefit. Mei recommends the Spring Forest QiGong site in Minnesota (Google it). They have some intro videos on YouTube.