Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Invisible Illnesses, Life Lessons, Rare Diseases

Just Chillin’

For those of us living with chronic health issues, life can get a bit overwhelming at times. Doctor appointments, treatments, etc. can be stressful for anyone, but when you figure in the uncertainty of chronic illnesses, things can get out of control pretty quickly. We quickly learn to look for ways to make life a little easier. I don’t know about anyone else, but I’m willing to try anything if there’s a possibility it might help.

With my Complex Regional Pain Syndrome, pain medications didn’t control the pain. They just made me sleep 18-20 hours a day. When I was awake, I was tired and didn’t function well. I basically didn’t even know I was alive. I just knew I was in pain. I didn’t like the way the meds made me feel, so I refused to take them. I told my doctors we needed to find another form of treatment. Like most people with complex chronic illnesses, I’ve tried many things. I’ve researched CRPS and read books on how our bodies process pain. I’ve done relaxation, psychology visits, physical therapy, graded motor imagery, mirror box therapy, injections, blocks, etc. The list of things I’ve tried seems endless. As I’ve mentioned before, my doctor implanted a nuerostimulator in 2004 to help block pain signals. I think everyone living with CRPS would agree that it’s very painful. I wouldn’t wish it on anyone. The nuerostimulator helps make the pain more tolerable, but I still cannot walk due to pain and weakness. It’s not a fix, but I’ll accept every little bit of improvement I can get.

Gastroparesis has been just as challenging. My doctor diagnosed me with idiopathic gastroparesis. Idiopathic means they don’t know what caused it. I imagine that diagnosis must be just as frustrating for the doctor as it is for the patient. It’s very difficult to fix something, when you don’t know what needs to be fixed. They do know that my gastric emptying scan shows that my stomach isn’t emptying my food into my small intestines. They also know that a biopsy of my stomach wall shows a lower than average number of nerve cells. However, they don’t know what is causing those two things. We tried medicine and that didn’t help. The trial gastric neurostimulator raised my stomach’s ability to empty from 30 percent to around seventy percent, so I agreed to have a permanent nuerostimulator implanted. Again, this nuerostimulator isn’t a fix either, but it is an improvement. I’ve also had to make some major changes to my diet. They say fat and fiber slow down digestion and since my stomach is already too slow, they have encouraged me to stay away from fatty and high-fiber foods. It has taken some adjusting to learn how to make tofu and other vegetarian protein packed meat substitutes taste good, but it’s better than being sick all the time.

Somewhere along the way, I started hearing about restorative yoga, essential oils, and aroma therapy. I live in a small town where these alternative treatments are not readily available, so I did some internet research. I thought I might find a restorative yoga class online that I could do at home while watching a video. I’ve still not found a restorative yoga video that fits my specific needs, but I did find some yoga positions that help ease Product Detailssome of my pain. I also found something on Amazon called Pinga, which is advertised as a 30-day pain relief program for treating and defeating complex regional pain syndrome. The entire program costs less than ten dollars and claims that it may free a person of chronic pain in as little as thirty days. I must admit, I was pretty skeptical, but it sounded simple and I was willing to give it a try. The book comes in paperback and digital format. The digital book was cheaper and allowed me to start reading instantly, so I downloaded the book from Amazon here. While the book contains scripts of the four recordings (introduction, session one, session two, session three), I felt I would benefit from having the MP3 recordings to guide me. The digital book cost almost six dollars and each of the four recordings was less than a dollar each. So, you are probably wondering  “What is Pinga and how does it work?” The book basically explains that you must do any of the three sessions, three times a day. You can do each of the three sessions one time each day, one session three times each day, or any combination of the three. The book explains that the most important part is to make sure you do three session each day for at least thirty days. Each session lasts from ten to fifteen minutes, so it doesn’t take a lot of time. In each session, a gentle relaxing voice leads you through focused breathing, relaxation techniques, and guided thinking/imagery.

 

As skeptical as I was, I wanted to complete the program and see if it worked. If you are still reading this post, I’m sure you are wondering, “Did it work?” My answer would have to be yes and no. I know that doesn’t seem like a fair answer, but it’s the one I have to give. After thirty days, I’m not pain-free. The program didn’t heal me. However, I’ve continued to use it periodically since purchasing it in 2014 and I’ve discovered that on days that I’m having more severe flare-ups, I can turn on a session of Pinga and relax. It doesn’t make my pain go away, but it does help me relax, which relieves the tension the pain is causing in my body and helps ease the pain a little. On nights when I am having trouble sleeping because of my complex regional pain syndrome and/or gastroparesis, I find myself turning a session of Pinga pain relief on, putting it on repeat, and letting it play all night long.

Will Pinga help everyone relax and rest better? Absolutely not. The guided imagery requires a person to be able to turn loose of their mind and let their imagination take them wherever the session leads it.  Just like everyone doesn’t get the same relief from medications and other treatments, meditation and guided imagery doesn’t work for everyone either. Like I said, it didn’t defeat my CRPS. Some days it doesn’t help at all, but on the days it does help, it’s worth it.

I share all of these things that I’ve tried as a way to encourage others not to give up. We get our hopes up, thinking a treatment might work and then if the treatments fails, we feel defeated. Every treatment option doesn’t work for every person. Our bodies are all unique and what works for me might not work for you. I encourage you to do your homework. Regardless of what chronic illness you might be fighting against, research the available treatments and don’t be afraid to try even the most simple things. No matter how silly something might seem, you won’t know if it works for you until you’ve tried it. A person can only fail, if he/she fails to try. Stand tall, hold your head high, and show your illness that you are a warrior and you aren’t giving up or backing down.

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