Thomas suffered from intense pain in his legs….mostly in his feet. As an active man entering his retirement years, he was finding it a challenge to get the enthusiasm for two of his favorite pastimes: hunting and camping. For Thomas, being outside and being active showed that he was still able to enjoy his life. Hunting required a significant amount of time on his property getting ready for the “season.” Many hours and many miles were spent trudging through the acres and acres of his property checking tree stands and clearing brush.
The debilitating pain of neuropathy came on fast and slammed Thomas hard. He couldn’t stand for too long without the throbbing sending him to a chair for hours at a time.
Trying to find the source of the pain was extensive and long. Test, x-rays, therapy and much more did not seem to come close to reducing the pain; Thomas couldn’t even take his much-loved boxer-puppy, Toby, for short walks.
Then he and his wife Alyce were told that pain management might be helpful and provide Thomas with a better chance of returning to a life that he loved and so Thomas and Alyce started a journey that neither had ever expected.
Thomas’s doctor tried one type of medicine and then another; then a combination. Some worked for the short-term and some not at all. In each case Thomas seemed to change slightly. At one point, while at their “snowbird” home in central Florida, Thomas was placed on an opioid he had not yet tried. Shortly after starting this new drug, Alyce was looking for him after breakfast and found him sitting on the toilet. When she asked him why he was sitting there so long, he answered that he forgot how to stand and then became angry because he didn’t recognize his wife of over 30 years.
It took nearly three years to get the right balance of pain medication for Thomas. He grew angrier with his doctors and Alyce each time a new treatment plan was implemented. Thomas never returned to the man who loved to camp and hunt for days at a time. He sleeps a lot now and isn’t very involved with things outside anymore. His years of intense pain and reactions to the opioids took its’ toll. It was not due to poor medical advice but rather not knowing what to expect and not expecting to be “pain free” with each new plan of action. He didn’t know anyone else wo was going through pain management to talk about his concerns and expectations.
Alyce had always been the family “scheduler.” If something needed to be done, Alyce made sure it happened. She was always supportive of Thomas for his long hunting trips and camping endeavors. Alyce loved to camp just as much as he did. She also hunted a bit over the years (but can’t remember shooting her gun).
One day Alyce noticed Thomas wasn’t as happy about getting ready to leave the house before daybreak to get to the tree-stand. When she asked him, he told her his feet were bothering him. This went on for a while. Later in the season Thomas told Alyce he didn’t think they could go to their cabin because he wouldn’t be able to walk the trails “all day” with her. They did go after much coaxing as Alyce thought once they were there it would be better; unfortunately, it wasn’t.
At the cabin Thomas pretty much stayed inside while Alyce went for a few short walks. On the drive back they had a long talk about how the pain in his feet was literally draining his energy. Alyce knew she had to make an appointment with Thomas’s primary care physician.
They were able to get in to see their doctor within a few days. He gave Thomas a few options for pain relief. Alyce, as always, had her notebook and kept close track of the suggestions and the eventual decision. To Thomas, this one appointment was supposed to get rid of all the pain and he would be back to 100%. Alyce shared his optimism but had slightly lower expectations as she heard the doctor suggest that success would greatly reduce the pain – not eliminate it. This course of action didn’t work. Nor did the next few attempts. Finally, after many months, the primary care doctor told the couple he was referring them to a pain management doctor because he didn’t know what else to try. This was not a relief to Alyce, but to Thomas it was what he wanted because his doctor “didn’t know anything.”
Through this experience Alyce was becoming concerned because she wasn’t sure what to expect or how to support her husband. Thomas’ pain was changing him and their relationship. None of Alyce’s friends had ever gone through this; they had not experienced changes in their spouses’ personalities or significant changes to daily life. She didn’t know anyone who was dealing with a spouse who was taking opioids. Alyce felt she was in this alone.
Alyce scheduled a visit to a pain management doctor who also put Thomas through a battery of tests. Thomas expected this doctor to “fix him” because it was his specialty after all. Alyce saw first hand the anger in Thomas when the doctor talked about a plan to treat the pain. Thomas snapped that he wanted it “gone” and walked out of one appointment. Alyce stayed and apologized and talked to the doctor a bit longer. She was concerned about the slow progress and the rising anger and depression in her husband.
There were several attempts at getting the pain under control. Alyce knew it wasn’t going to be as easy as Thomas insisted. Each new attempt and modification to the opioid based program continued to change his personality and their relationship. Alyce was becoming Thomas’s personal care assistant as he was forgetting when he was supposed to take the medicine…or even what meds he was on. She saw him age quickly and their once robust life reduced to Thomas becoming totally dependent on her. Alyce was becoming increasingly saddened by what she saw as their future.
Thomas has been able to recover some of his life. He still is dealing with significant pain but at least he can enjoy camping and hunting (although for much shorter periods of time). He also sits in his chair for the better part of the day. Alyce is still the “scheduler” of his medical appointments and his personal care aid. There is a regimen of medications and pain patches. She knows she must remind him to take his pills and she has to change his pain patch every three days. Their relationship is a different one now, but at least there is a little less depression. They still don’t know what to expect and have yet to meet anyone else who has lived through this experience.
InvisionHealth Foundation Stories like Thomas and Alyce are not uncommon. Over 100 million adults in the United States are suffering from chronic pain. The journey of developing a successful pain management program, often including opioids, is truly a personal and individualized experience.
InvisionHealth Foundation has developed a program to help couples such as Thomas and Alyce. A multiple week support program works with patients who are being prescribed opioids (or who are planning on using different opioids). The initial meeting will cover some of the expectations of opioids and the changes and challenges they may expereience. They will also work with a trained professional on how to deal with pain. This group will meet several times so they can continue to learn and understand their shared experiences; know that they are not alone in their efforts; and can begin to create a meaningful life while coping with a certain level of pain.
InvisionHealth Foundation had developed a companion group for those that help take care of the patient. This support system will also meet over several weeks as they and their loved one navigate their individualized pain management journey. They will learn how to help “their” patient and how to help themselves. They will understand that they are not alone in this shared journey through pain management. Each seminar will cover a new topic, such as how to deal with depression (both personal and from the patient).
There will be no personal charge to the patient or their care team. Each group will have a trained therapist to help guide and assist them in understanding realistic outcomes and expectations.
Thomas would have benefited from hearing others’ stories. He would have heard from his peers that it wasn’t an easy fix and it took time to find the right combination of pain medication and life modification to get the best quality of life possible. Thomas would have learned how to better understand that he was not in it alone.
Alyce would have found that critical element that she needed. She would have learned from others that there would be tough times ahead and to expect some changes for her husband, herself, and their relationship.
Please consider a donation to InvisionHealth Foundation so together we can start this proactive endevour!