Learn how this survivor copes with the symptoms of Reflex Sympathetic Dystrophy (RSD) – she was diagnosed 10 years ago. Her tips for living with chronic illness can change your life!
You may be surprised to learn how many people are diagnosed with Reflex Sympathetic Dystrophy every year…
“More people have Reflex Sympathetic Dystrophy than Multiple Sclerosis, HIV, and breast cancer combined,” she says. “There is upward of 78,000 new cases of Reflex Sympathetic Dystrophy diagnosed each year in the US alone. RSD can affect anyone, regardless of age, race, gender, or financial status. Paula Abdul – a famous singer – has Reflex Sympathetic Dystrophy and struggles with the same physical battles that we as chronic care patients deal with every day.”
Does it help to know you’re not alone in your struggle to live with Reflex Sympathetic Dystrophy? Here, 39 year old Barby Ingle from San Tan Valley, Arizona, describes what it’s like to be a 10 year veteran of Reflex Sympathetic Dystrophy.
She is the author of RSD In Me! A Patient And Caretaker Guide To Reflex Sympathetic Dystrophy And Other Chronic Pain Conditions – as well as another book on Reflex Sympathetic Dystrophy called ReMission Possible!
How Barby Developed Reflex Sympathetic Dystrophy (RSD)
I developed symptoms of Reflex Sympathetic Dystrophy after an auto accident in 2002, and wasn’t properly diagnosed until 2005. I am currently in remission. Any time my body perceives a trauma, I can come out of remission. Therefore, I am unable to do a lot of physical activity. I have to be careful and stay away from activities that can injure me.
As I search for a cure for Reflex Sympathetic Dystrophy, I have become my own best advocate. After seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, and so much more – I did not give up or give in! I was tested to my limits and realized they are past the boundaries I placed on myself. If I can do it, anyone can.
I learned to take a proactive approach to my medical care, an empowering step that helped in my health journey.
What is Reflex Sympathetic Dystrophy?
Reflex Sympathetic Dystrophy is a progressive Autoimmune Neurological condition that affects multiple systems in the body, and needs to be treated early so that disability does not take over.
I know how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you’re saying about your symptoms of Reflex Sympathetic Dystrophy.
What Barby Wishes She Knew When She Was Diagnosed With RSD
I wish I would have known that the healthcare system is not always what we are led to believe. People look up to their doctors and put total faith in them. I have learned though my own health experiences and through volunteering with the Power of Pain Foundation that I am responsible for me, just as you are for you.
It is important to remember that doctors study a particular practice of medicine. Just because they are a Neurologist doesn’t mean they can treat Diabetic Neuropathy, Multiple Sclerosis, Lyme, and Reflex Sympathetic Dystrophy. Each doctor gets a small variety of a medical field and then finds a part of a specialty that they love and work on with great ease, research and education.
Therefore, it is important to find a doctor that specializes in your specific condition. Become the Chief of Staff of your own medical team!
Tips for Living With Reflex Sympathetic Dystrophy
Prepare yourself for changes will keep your life with Reflex Sympathetic Dystrophy on a positive track. Use your community resources such as food banks, church supports, and non-profit support 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.
Be prepared to face the pain that the symptoms of Reflex Sympathetic Dystrophy can bring, and have a plan. In order to remain as independent as possible and to minimize the disruption of daily life, consider changes to you daily routine and surroundings. If you have Reflex Sympathetic Dystrophy, you want to stay independent.
Unfortunately, pain still poses a problem for patients who are under-diagnosed, over-diagnosed or misdiagnosed with Reflex Sympathetic Dystrophy or other chronic illnesses. Controlling the pain you are in is essential to quality of life. Knowing the characteristics of pain and why it is happening will give you an advantage in coping with it.
Taking control of your life and being responsible for yourself will help you cope with the symptoms and treatments of Reflex Sympathetic Dystrophy.
If your RSD symptoms include fatigue or exhaustion, read Too Tired to Work? How to Survive Chronic Fatigue.
Tips for Family and Friends
Take care of yourself first! You cannot care for someone with Reflex Sympathetic Dystrophy if you’re not keeping yourself together. And, try not to feel guilty when you need a break to do something for yourself. No one can be there for someone else around the clock.
You might also consider joining a support group for people affected by Reflex Sympathetic Dystrophy.
Barby’s Books on Reflex Sympathetic Dystrophy
I wrote two books, RSD in Me! (the link to Amazon is at the top of this article) and ReMission Possible: Yours, If You Choose To Accept It, which are more than one patients story. They are books of hope, inspiration and positivity, even when facing the toughest of times. The books offer practical advice, tips and tricks for better daily living and resolutions to the challenges of living with chronic pain.
All proceeds from the book sales go to the Power of Pain Foundation. Learn more about Reflex Sympathetic Dystrophy (RD) and other neuropathy conditions at the Power of Pain Foundation. To learn more about me, visit Barby Ingle or my Facebook page.
What are your thoughts on surviving Reflex Sympathetic Dystrophy? Your comments are welcome below…
If you’re living in harmony with or fighting illness, I’d love to share your story. Go to How Do You Live With Chronic Disease? Stories From Survivors.
2 comments On Reflex Sympathetic Dystrophy – How Barby Survives RSD Symptoms
Hello Terri, Thank you for sharing your story! I was also a person who cleaned and did all of the housework to make sure my house was immaculate. Then I couldnt anymore. My husband has to work, and I had to come to a realization that having a perfectly clean house was the least of my worries. It is ok if your house is not perfect, you have better things to spend your energy on. The financial burden can be very depressing. Have you tried Co-Pay Relief fund? They give out grants to help you pay for your medications so that you can better afford living expenses. I gained 40lbs from the steroids. Since I couldnt workout, I did research and found a pill that is used for both weightloss and depression. Talk to your doctor about Wellbutrin XL, and if it is right for you. I lost all 40lbs without working out and in 2-3 months time. I felt so much better about myself when I got that weight off. (tip: I found that the generic version of WXL does not work the same because the fillers are different), and if you doctor doesnt think Wellbutrin is good for you, ask him what other options would work. Thank you for the compliments, and I too wish more people had the public eye, but we are all making strides, and stories will add up to more awareness.
Thanks Barbie! I was diagnosed with RSD March of 1991 after a brachial plexis pinched nerve while at work Sept. 4th, 1990 & it’s been a nightmare ever since. My whole life was changed in an instant. The biggest problem I have because of the pain is the inability do do my house work & I don’t know where to turn for help. I get WC but it is at wages I was receiving in 1990 so there’s not enough to pay someone to do it for me & I used to be an immaculate house keeper. Now it just makes me cry! i was turned down for SS because I was just short of enough working quarters in after returning to the work force when my children were old enough not to need a babysitter all day. So I feel frustrated on top of financially drained & depressed with the weight gain due to the steroids they kept giving me, so what’s a girl to do?
Thank you for all you do for RSD awareness, I wish more people had the public eye like you do!