Power of Pain: Choosing to be Happy

By Barby Ingle, Columnist  

Mental health can be disrupted by chronic pain. Anxiety, depression, hopelessness, isolation and helplessness can increase to dangerous levels. Particularly for people who have been suffering with chronic pain for a long period of time, life can become overwhelming.

When I finally realized that chronic pain had no cure and that my future would include pain on a daily basis, I began to have dark thoughts. I did not want to end up at risk of suicide, so I started to build tools into my life for emotional comfort. 

There are going to be good and bad days, and if this is a bad day for you, remember to focus on the good days, good feelings, positive past, and future experiences. It is very important for you and your family to recognize the symptoms of diminished emotional well-being and take action.

Understand that these feelings and thoughts are common among people living with chronic pain. It is helpful to create an overall strategy to get through the rough times.  Chronic pain patients learn over time that they can better cope and adjust to both the physical and psychological consequences of their disorder with the help and support of spiritual guidance, family and therapists.

Creating an arsenal of tools, such as spirituality, physical modalities and meditation, are all ways to better your situation. Turning to God has especially helped me with anxiety, depression, and other psychological and physical challenges; and it offers a great way to cope with and put situations into proper perspective so we can learn to live with them.

Chronic pain is not understood very well, and there are physicians and psychiatrists who believe that it is all in our heads or that people just complain for the sake of getting worker’s compensation or some other benefit. If we are seen as malingering patients who just won’t go away, doctors who don’t understand chronic pain may find it difficult to look for any other diagnosis other than psychological. A lot of my stress could have been avoided if doctors had really listened to me from the start, instead of looking at my marriage troubles as an excuse to “be ill for attention.” 

There were stages to my grieving. First was hope. I hoped that there was some cure to make the pain go away. Second, wondering if the treatment I was receiving was appropriate, I got angry. Feeling resentment and depression when I realized that this is not temporary is sometimes overwhelming in itself.

When this happens, I try to rationalize and evaluate the changes in my life and how I live it. In doing this I come to an understanding and acceptance of what my place is with permanent pain.

Despite the difficulties we experience, it is important that patients with chronic pain and other chronic conditions maintain a healthy lifestyle, including getting enough sleep, exercising, and eating healthy foods.

There are long-term health consequences created by leading a more sedentary lifestyle due to our pain. Because we are less active, we are at greater risk for developing other medical problems. We need to watch out for cardiovascular disease, diabetes and osteoporosis, as the risk for these conditions is heightened by inactivity.

I myself have been dealing with poor posture and sudden weight gain and loss. I fall easily and have trouble gripping and holding onto things.  

No matter the challenges of today, they will pass, and in retrospect, they will not seem as bad as time moves on. The challenges may just turn out to be a bump that looked like a mountain at the time.

I have found that when I live life with a negative attitude I am saying that I do not respect myself and do not believe success is possible. Try working on displaying a positive attitude and the moods of others and the challenges of life will become easier to deal with.

Choosing to be happy starts with you. No person or thing can make you happy and positive. It is a skill you have to practice and develop when living with chronic pain. When you are able to live in a happy, positive and optimistic light, your life will become a life worth the ups and downs that come with it.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: NERVEmber

By Barby Ingle, Columnist  

In a few short days Nerve Pain Awareness month begins – a global movement known in the pain community as NERVEmber.

I began the NERVEmber project in 2009 as a way to bring more attention to chronic nerve pain conditions such as Reflex Sympathetic Dystrophy (RSD/CRPS) and diabetic neuropathy. The term NERVEmber is derived from the burning pain people with neuropathy feel, combined with the month of November. 

The Power of Pain Foundation hosts the official NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber and bring awareness to the 150 plus conditions that have nerve pain as a symptom.  

The color orange is the international color for chronic pain awareness, which also fits right in with the fall colors we typically see.

Our largest spotlight throughout the month shines on RSD, which is one of the most painful conditions known to mankind. Yet, like many chronic pain conditions, RSD is misunderstood, mistreated and often misdiagnosed. 

Each day during the month of NERVEmber the Power of Pain Foundation will present an awareness task that we can all participate in. This year we are also giving away over $1,000 in prizes -- available to anyone who registers to participate and uses special hashtags on social media, completes daily tasks, and hosts or attends an event. The more you participate in official NERVEmber events, the more chances you have to win!

You can bring more awareness to conditions like RSD, CRPS and diabetes by posting every day in NERVEmber using social media tags on your posts such as @powerofpain and #PaintTheWorldOrange. Using these tags will earn participants chances to win some great prizes.

The Power of Pain Foundation and the #NERVEmber project is also supporting the #CRPSdayofaction, #RSDdayofaction, @theproject3x5’s, #OrangeInitiative,  #ColorTheWorldOrange, and #ColourTheWorldOrange. 

Official events include tasks shared on social media, wearing t-shirts, Paint the World Orange, and educational series.

The daily calendar of events are available here on the NERVEmber webpage.

One of our newest additions to the project is #painPOP. We are asking people to get involved by popping a balloon and challenging others to do the same or make a donation to help the Power of Pain Foundation continue our education, awareness and access to care programs.

We are asking participants to text, post or say something similar to, “I have the NERVE to be HEARD!"

We will also be posting educational videos on YouTube and our website. Watching videos and commenting on them gives participants more ways to win great prizes. For #PaintTheWorldOrange, we ask participants to post their #NERVEmber pictures on social media and to share your pics as you #PaintTheWorldOrange. Be sure to hashtag it #NERVEmber #PaintTheWorldOrange to increase awareness and your chances to win POP prizes.

Participants are also invited to create graphics of their own using #NERVEmber and #PaintTheWorldOrange. Don’t forget to WEAR ORANGE all month long! You can upload your orange photos to help us paint the world.

Tens of thousands have participated in past years from around the world and we are expecting even more this year. Don’t miss out on being part of a movement to make a difference.

For more information on NERVEmber visit http://powerofpain.org/nervember

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: Tools for Today and Tomorrow

By Barby Ingle, Columnist

Taking each challenge one step at a time can help you gain perspective on your future. There are multiple aspects to pain management to be considered, such as physical and mental health, trends in the healthcare industry, and personal injury liability. Learning about them and putting life into perspective can help us deal with behavioral changes, social isolation and spiritual concerns. 

Understanding that pain causes depression, not the other way around, can be a good place to start. Realize that you have control over your actions, and feeling bad is not a proper excuse for treating others poorly. Doing so can lead to social isolation.

You may not feel like having others around or it may make you self-conscious about losing the ability to do simple activities with them. But creating a support network and staying socially involved can increase your quality of life as a chronic pain patient, as well as increase the human connection that we all need.

Once again, I need to emphasize proper communication for better treatment, attitude, and comfort. Working with your social network, finding out about future trends, and what your doctor has learned can help you keep the pain perspective.

Have hope that a cure will develop. If a new procedure becomes available, you will be prepared and have the support of those around you. When you hear of positive news like a new treatment, ask your doctor about it and if they are willing to give it a try. Find out if it is just another gimmick or if there is real science behind it. Be sure to do your own research and be comfortable with your choices. 

With chronic pain diseases, you have to be your own advocate and motivate others to advocate for you. If you were injured through someone else’s negligence, find out the legal consequences and if any action can be taken. Speak with a personal injury attorney to find out if you have a case. If you do, he can instruct you on how to arrange payments for medical treatments and how the lawyer will be paid. Question if the defendant is responsible for your bills now or if you have to find a way to cover your medical bills and be paid back when and if you win your case.

It is also important to know what happens if you don’t win your case. Ask if you will have to pay charges your lawyer paid to prepare the case or if you have to pay liens. Liens are holds or rights to property or monetary gain on property. Many doctors’ offices will put liens on your case. This means that they get paid before you receive any awards.

Becoming prepared for these new life changes will keep the perspective to your new life on a positive track. Use your community resources such as food banks, church support groups, and non-profits to get the help you need. Help is there, you just have to be willing to take it and put in as much as you can to keep your life on track.

Because chronic pain and bad health in general weakens the immune system, your ability to heal and fight diseases is also compromised. I often can catch someone's cold by being near them through physical contact, such as hugs or sharing candy out of the same dish with a child who has dirty hands.

Often as a pain patient I do not want others to touch me, both for my health and because -- unless they really know me -- they don’t know where it hurts. So I usually ask people not to touch me without asking.

Be prepared to face the pain and have a plan.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: There is Great Reason for Hope

(Editor’s note: Pain News Network is pleased to welcome Barby Ingle as our newest columnist. Some of you may already know Barby from her work with the Power of Pain Foundation, but you may not know the story behind her activism on behalf of pain sufferers. You can read all about it here.)

By Barby Ingle, Columnist

The good news is I have taken control of my chronic pain diseases. It has been a long tough road -- 18 years of living in the healthcare system have taught me to stand up for myself and learn to be my own best advocate.

It all began when I developed endometriosis in 1997 and worsened when I developed Reflex Sympathetic Dystrophy (RSD) after a minor car accident in 2002. I thought endometriosis was bad until I got it RSD.

Prior to the accident, I was a business owner and head coach at Washington State University for the cheer and dance program. I was living a great life and was successful in managing the endometriosis through medication and surgery. After the accident I had shoulder pain. Even though there were no signs of an injury on x-rays or MRI images, doctors suggested I have shoulder surgery. This surgery did not fix the pain and only made things worse.

Doctors were stumped and sent me a TOS specialist. After more tests the doctor realized I needed surgery again because bone spurs from the first TOS surgery were going into my lung and nerve bundles in my right shoulder.

BARBY INGLE

BARBY INGLE

In 2005, I was finally diagnosed with RSD and learned that TOS was a symptom of RSD. By the time of that diagnosis, I had been treated by 42 other healthcare providers and been told many random strange things, from “It’s all in your head” to “Your boobs are too big. You should get a breast reduction.”

My RSD symptoms were called “bizarre” by one prominent neurovascular surgeon. Some of those symptoms included severe pain, sweating, skin discoloration, sensitivity to touch and light breezes, dizziness, vomiting, syncope, and gastrointestinal issues.

Every procedure was a new trauma that increased my pain and other symptoms.

Learning about RSD

The 43rd provider finally looked at my records in their entirety before coming into the exam room. He was the one to figure out I had RSD and give me some of my first answers. I remember being so excited because I finally had a name for what I was dealing with.                                                     

But once I started to research RSD on the internet, that excitement turned to fear. I took the time to find out who the best providers were and found ways to get to see them. I have now been treated by over 100 providers since 1997.

Having experienced painful injuries many times in my life, I thought all pain was the same. Now, I know there is a difference. I learned that you can have more than one type of pain at the same time (burning, stabbing, cutting, electric, etc.). I feel bad for the people I knew with chronic pain before my experience began. I thought they were constant complainers. I was wrong.

I was humbled as I needed help with ordinary activities of daily living, like dressing, bathing, traveling, cooking, shopping, and walking. What I was going through was traumatic and depressing. The burning pain was never ending.

Living with pain is a big life challenge. It has been hard. Through this challenge I have learned we all have a right to proper care and treatment to ease our pain. Don't stop until you get the help you need.

Remission

As of 2009, I have been in and out of remission. What I found that worked best for me is the use of an oral orthotic (a mouth device that lowers brain stem inflammation), IV infusion therapy, aqua therapy, heat, traction, better posture, improved eating habits, and stretching exercises. There was not a one size fits all cure for me or any of the thousands of patients I have met in my pain journey.

I have come in and out of remission since then. In the beginning I would be so afraid that this time the doctor would not be able to help me. Now I know that if one doctor can’t help there are others that can. Not all providers offer the same knowledge or access to treatments that may be right for me. I have to research for myself to find out what I am comfortable going through.

We all have to learn to be the chief of staff of our medical team. Be empowered patients and live life to the fullest each moment. Don’t feel guilt if you can’t do something right now -- make it a goal to accomplish once you are able.

When you think it can’t get any worse, it can. And when you think is can never get better, it can. Take life moment by moment and know that we all have ups and downs. Never give up and never give in!

My drive to turn pain into power comes from my motivation to find a cure for RSD. No one should have to go through my experience. 

Barby Ingle is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation.

Barby is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found by clicking here and at the Power of Pain Foundation.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.