We’re shining a spotlight on rare chronic pain conditions, that are often misunderstood, to help people learn about what they are and how Oska Pulse can help. Our first spotlight is on Complex Regional Pain Syndrome, or CRPS, a very rare chronic pain condition that typically affects an arm or a leg, but can also spread throughout the body and even switch limbs. Usually developed after an injury or even a stroke or heart attack, CRPS is characterized by a lingering pain that’s disproportionate to how bad the initial injury is, meaning that a minor injury could cause prolonged and severe, debilitating pain. Though symptoms vary from person to person, they typically include pain, swelling, hypersensitivity to cold and touch, muscle spasms and limb discoloration.
We talked to CRPS patient, Tracey Morales, about her battle with the condition and how Oska Pulse has helped her:
Q: Tell us more about your battle with CRPS.
A: My RSD (Reflex Sympathetic Dystrophy)/CRPS story starts in January 1998. A toy computer fell on my left foot, fracturing two toes and crushing the MT joints (or toe knuckles). After two weeks, I knew something was very wrong. My leg felt like it was on fire, but ice cold to the touch and so discolored from my groin to my toes that it looked like someone colored my leg with a black magic marker. I had six outpatient sympathetic nerve blocks and an in-hospital six-day epidural over the following six weeks. All worked, but wore off within 24 hours or less. RSD comes back fighting, worse after each treatment I soon found out. I decided to have a sympathectomy, or a surgery to remove part of the nerve going down my left leg two months after the initial injury.
The morning of that surgery, my big toe was beginning to gangrene. Luckily, the surgery worked and I went into remission for four years. I went back to work, got married and had my second daughter. But when she was two, she had her tonsils removed and I stayed in the hospital with her. I fell asleep next to her in the bed, not realizing that my foot was pressed up against the footboard. I awoke the next morning, stood up, and the RSD was back. The pain was so excruciating that I couldn’t even put weight on my foot. Over the next five years, the RSD spread throughout my whole body and I was bedridden 95 percent of the time due to the debilitating pain. I tried more sympathetic nerve blocks, lidocaine infusions and many different medications over the years, but nothing worked. The pain only got worse.
A friend suggested I try experimental ketamine infusions, so I waited on a list for a year and a half for my first appointment and started the infusions in January 2007. For ten years, I had 10 days of infusions, then three days of booster infusions every 2-3 months. The infusions worked for eight years. And then for two years they didn’t and my pain went through the roof again. My last infusion was in December 2016 and in April 2017, I started using Oska Pulse. I’ve now been using the Oska Pulse PEMF machine for two years.
Q: How did you first learn about Oska Pulse?
A: I design RSD/CRPS awareness items and have a store on Zazzle. A former Oska Wellness employee and board member emailed me through my store about a ribbon that I had designed. I noticed his email was from Oska Wellness, so I asked him what that was. This led to a dialogue about Oska Pulse and RSD/CRPS and eventually a friendship. After learning about Oska Pulse, I immediately ordered one for myself and one for my daughter who has Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS) and Temporomandibular Joint (TMJ).
Q: How has Oska Pulse helped you?
A: Oska Pulse has brought my pain down to almost nothing. It's helping with so many different symptoms and I have been able to take back my life and do the things I love to do again. I’m getting more relief using Oska Pulse than from the very expensive ketamine infusions I received for 10 years. I haven't had a flare in over a year, even with a few falls. The swelling and discoloration in my leg is also gone and I'm in the process of decreasing my pain patch.
Q: How do you use Oska Pulse?
A: For the first two months, I used Oska Pulse six to eight times per day with full 30-minute sessions, plus under my pillow every night for at least one session. Then, after about two months, I'd forget to use it during the day (still using it at night) because I wasn't in pain. Two or three days would go by and I'd start to have a bit of pain and I'd realize I hadn't used it. My pain had gone from a 9-10 to under a 2 in a matter of three to four months. That’s how much it helped me. I started to only use Oska Pulse during the day as a preventative at that point, if I was gardening or out shopping, to avoid a pain increase rather than because I had pain. Now, after using Oska Pulse for two years, I still use it every night under my pillow, but only during the day as a preventative measure a few days a week, if that.
Q: Is Oska Pulse helping you reduce or eliminate medications?
A: When I started using Oska Pulse two years ago, I was on the fentanyl patch receiving 200mcg every two days, which I had been on for 16 years. I also used Opana 10mg for breakthrough pain as needed. Thankfully, I have not needed to use Opana since the first week I started using Oska Pulse and I've been very slowly weaning off the fentanyl patch since November 2017. I'm now down to 25mcg every two days. I have one or two more decreases and I'll be totally off ALL meds thanks to Oska Pulse!
Q: Tell us more about what you wish people knew about RSD/CRPS.
A: I wish people understood how extremely painful and debilitating RSD/CRPS can be and that it can spread to anywhere in the body where there’s a nerve. Also, not every person with RSD/CRPS has the same symptoms. Each case can be very different and that needs to be recognized. In many cases, the symptoms aren’t visible either, so just because you can’t see them, it doesn’t mean we’re faking or exaggerating the pain. The pain, fatigue, depression, loneliness and many other symptoms of RSD/CRPS is very real. So, believe and support those loved ones who struggle with chronic pain because that support is so necessary.
Q: Any advice for someone struggling with a chronic pain condition?
- Remember that having a chronic pain condition like CRPS is not your fault and that you didn't ask for this, so don't feel guilty or let anyone make you feel guilty about it.
- Accept it. Once you accept that your pain has changed you, you can focus on how to do things differently and what is important. Find new ways to do the things that you love to do.
- Find a doctor that is knowledgeable of your condition, believes in it and believes that your symptoms are real. Trust in your doctor is essential.
- Distance yourself from people in your life that are putting you down and don’t support you. You need positive, helpful and understanding people in your life.
- Surround yourself with a good support system, whether it's family, friends or a support group (in-person or online). Having a support group is very important because it’s helpful to have people in your life that truly get what you are going through.
- Do your own research and be your own advocate. Don't blindly trust your doctor. Find someone you trust that can be your advocate when you can't be.
- Don't be afraid or embarrassed, or feel guilty, to ask for help. Whether it's help with chores or if you're having a bad day or dark thoughts, ask for help when you need it.
- Find something that can distract you from your pain. Coloring, drawing, music, etc. can all be helpful.
- Put yourself first and rest when you need to.
- Lastly, get an Oska Pulse!