Don’t give up: Stay connected with your medical providers so you don’t miss something new

Contributed by: Virginia
Reviewed by: Evelyn Corsini, MSW, October, 2010

Virginia is 72 years old and lives in Massachusetts.  She had a 30 year career as a physical therapist. Now she enjoys crafts and loves flower gardening, but it increases her leg pain so she must do this in small amounts of time.  She and her husband enjoy fun times with their three young granddaughters who live nearby.

A form of chronic neuropathic pain, thought to be complex regional pain syndrome [CRPS1] began after intense aerobic exercise, on an elliptical machine.  It began insidiously, pain in right anterior thigh and within 6 months, the left thigh.   I thought it might be rhabdomyolysis due to taking a statin medication, or MS [multiple sclerosis] or ALS [amyotrophic lateral sclerosis, also known as Lou Gerhig’s Disease]!    As a physical therapist, I began to fear the worst.

There came a saga of medical tests, a lengthy list of medications.  The anxiety was fierce.  After 3 years of appointments, including neurologists who failed to diagnose, as a Iast resort I was referred to a neurology research center at a large teaching hospital.  Finally my pain had a name.  I dreaded to hear it.   I had patients who developed it as a result of injury.  But I didn’t see it in myself, I’d had no injury.  Reading  information on painACTION, I realize that I don’t have a good handle on the pain, I am usually a 6 pain level, sleep is interrupted, non-restorative.  Worst, I realize that I don’t have an ongoing communication with a physician who really knows my situation.  I am on my own, varying the amount of gabapentin and tramadol, appointments occasionally to report how I am while the physician takes notes.  I keep appointments in case there is something different.

Recently, I changed primary physician, obtained a referral to the Pain Clinic at that hospital.   After hearing my story, a spinal implant was recommended.  I was so hopeful.  Unfortunately it made my pain worse.   I feel I am on my own again, gabapentin and tramadol leaving me tired, anxious and feeling discouraged, excited to become more aware of what I can do.

My best days are with my three young grandchildren, my inspiration, help me manage the awareness of pain, motivate me to take care of my health otherwise.    My garden and crafts  distract, I have support from a terrific husband, self confidence in who I am  and what I have contributed to  the  patients I have helped as a home care physical therapist, contributions to my family and community.

I am angry that neurologists didn’t diagnose this sooner when relief was more possible.  I read that it is more treatable in stage 1.  I sought help in stage 1, and stage 2.  I realize that I don’t have a good ongoing connection with a physician.  A lot of literature suggests support groups are helpful – I don’t know how to find one.

My best tip for my kind of neuropathic pain is to sit in the tub with comfortable hot water. It tends to calm the nerve endings before going to bed.

I realize now that I have some work to do to get connected. I am tired of accepting constant chronic pain with constant fatigue, lacking ability to sleep well, and having low energy for what I want to do.  Sorry, this is not very inspirational.


ADDITIONAL INFORMATION TO MY STORY:

Because of my participation in painACTION I was motivated to make connection again with the interventional pain clinic where I had tried the implant.  At first, when the implant failed, I figured no one there would be interested, but again, because of what I have been reading of the importance of being connected to your pain physician, I made another appointment.  To my surprise, he had another new medication used for Fibromyalgia and recently approved in the US by the FDA. He thought since its effects are on the nerve endings, it might help me and worth a try.  Since then, I have had several more appointments to fine tune medications.  I have discontinued tramadol in exchange for acetaminophen with propoxyphene as the medication for pain, and experience less fatigue.

So now, I have a working relationship with my doctor, we agreed that I should see him periodically as it makes me feel connected and I can keep on top of what might be going on for treatment and research.  I am motivated to be more active in my care and to always be looking for new approaches to treatment and ways to motivate positive thinking.  Although pain is always present, and varies, I have periods of time where the pain level drops to 3 and that lessens anxiety.

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