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Do you have a lot of pain? I’ have pain to the point of not being able to function. ID Dr says pain isn’t a symptom of NTM PD
Replies to "Do you have a lot of pain? I’ have pain to the point of not being..."
HI Renee - I did have pain while I was being treated for MAC, and I tried to attribute it to the infection. Five years (and a lot of hard work) later I have a better understanding of what was happening to me.
I was very ill by the time my MAC was diagnosed, along with bronchiectasis and pseudomonas. My health had been on a downward spiral for 2-3 years, I coughed all the time, had crushing fatigue and was generally miserable, so I spent most of my time in bed, on the couch, or in a recliner, getting up to drag myself through appointments and vital chores.
The worse I felt, the less I moved, and the less I moved, the worse I hurt...repeat, repeat, repeat. When I finished my antibiotic therapy in December 2019, weak, tired and in pain. After seeing and talking to my primary several times about this, and not getting any better, I was referred to a pain rehab specialist - remotely since this was during Covid. Together they determined that in addition to the remnants of my infection/treatment, arthritis and fibromyalgia, my body overreacted to all pain and immune system stimulus - creating the cycle. This is sometimes referred to as Central Sensitization Syndrome (CSS) and is manageable.
Over the past 3 years, I have seen the pain rehab docs, talked to a psychologist, had extensive PT - and done a lot of work. I learned what pain is signaling an illness or injury and a need for intervention, and what pain is chronic - just as real but needing to be managed it with exercise, distraction and mindfulness and other techniques.
One tool I found particularly useful was the book "The Way Out" by Allen Gordon and Alon Ziv which explains the concept of neuroplastic pain - pain which may be referred from one part of the body to another, caused by stress, and managed by the techniques the book outlines.
This is just a synopsis, and something to think about...
What does the doctor suggest?
Sue
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In 5 years of treatment, the only pain I have had is a couple rib sprains from coughing. One was actually caused by Arikayce. Each lasted about a month.