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Sonja’s Fight Like a Girl Story (Reflex Sympathetic Dystrophy)

Sonja's Story (RSD) My name is Sonja. I’m 24 years old. I developed a condition called RSD (Reflex Sympathetic Dystrophy) when I was 20 years old. It has been severely debilitating. RSD is the most painful disease, ailment, or injury that is known to mankind. It surpasses cancer, non-surgical amputation, and unprepared childbirth without medication, on the pain scale. RSD typically is brought on by an injury. RSD can spread with or without cause throughout the body.

My battle with RSD started after I was in a series of accidents. I dislocated my shoulder which brought on brachial plexopathy and RSD. My shoulder became paralyzed. I decided to go through surgery to get a device implanted called a spinal cord simulator. The surgery caused many problems. It caused my RSD to spread. I just had surgery May 30th to remove the device because it was broken and causing many problems.

The RSD has caused much pain and disability. I am winning my fight because I wake up every day and I choose to live through it. I choose to smile and laugh. I choose to love my family and my husband.

I have trouble with eating, digestion, and with my intestines, but this is also linked to RSD. I also have a heart condition linked to RSD. It is so hard to get up in the morning. Sometimes lifting my head off the pillow in the morning is the hardest thing in the world. I won’t give up though. I won’t give up because I love my family, my friends, my husband, and I love my life. I am proof that life can go on even if you have an illness or disability.

Sonja
Kentucky
Submitted 6-2-2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

2 comments

  1. OMG! i have been diagnosed with the same disease. I finally had to just so No More! I can’t walk without winsing with pain. no medication takes the pain away. ANy help with this would be appreciated. I am now 54 yrs old and being forced to retire is heart wrenching. I am. so depressed and hate the fact my entire family thinks I am a drug addict. I just want some relief, please,if you can, tell me your secret?I

    • Hi I’m sonja the author of this story. There is no secret. RSD is a very debilitating and painful disease. I have lost many friends and abilities, but I have gained a new perspective. I also have gained great friends who love me no matter what. The best advice I can give you is cut people off who are contributing to you being depressed or feeling down; this will only make your illness worse. Don’t let people belittle you. If they aren’t willing to learn or understand honey they are not worth your time. Also you can visit rsdsa.org and get a printable card that will explain your condition for others. As far as treatment I’m not going to lie to you I have been through the wringer. Treatment for RSD is very much trial and error; what works for one may not work for another. It is not in your head. It helps to see a therapist and talk about it though. It helps so much to have someone not involved to unload your feelings to. As far as medications I’m in the same boat as you…nothing quenches the pain, but some things make it bearable. It is always there. You have to focus on the positives in life though, the people who love you, the things you love, the things you love to do, etc. I can’t walk well either. Some tips I can give you for the long run are (1) Take care of your skin (between years 3-5 onward you will typically start developing skin problems due to immune dysfunction). I take warm baths with a good skin healing lotion added to the water (3-5 squirts of it), bubble bath with relaxing scents that are good for skin, and small amount of epsom salt to battle inflammation. Also use lotion and cortisone cream when needed (cortaid, cortisone 10). (2) Take the medicine as directed. Do not use more or less. Check your medicines for interactions and allergies as the pharmacy can miss this sometimes. Do not pay attention to what others say. YOUR DOCTOR WHO KNOWS YOUR CONDITION HAS DEEMED THIS MEDICATION NECESSARY. (3) You must do physical therapy even though it hurts. Make sure you don’t overdo it, but you must make sure your body is getting some type of activity or the RSD will only get worse. (4) Surround yourself with loving supportive people. (5) Prayer or meditation. (has been scientifically proven to at least help depression) (6) Anesthetics can be our best friend. Ask your doctor about lidocaine. (7) Sympathetic Nerve Blocks and Epidurals may be helpful. (8) Don’t be afraid to tell people how you are feeling. If you can’t take another step speak up. If you must sit down immediately say so. You have a very unpredictable illness and you do not need to over do it. (9) Enjoy the simple things in life. I personally love records. I have a ton of Vinyls. Music is my escape. (10) Establish a good sleep routine. Work with your doctor on this. Trust me I know how hard this is. (11) Make sure you have a doctor who is well versed in RSD. (12) You don’t have to learn to live with it. Never give up. There are a wide range of treatment options. (13) Topical creams are good. I use a lidocaine cream, but there are many others. (14) Antiepileptics are very helpful. (15) Tricyclic antidepressants are very helpful to treat all types of pain. Elavil and Nortriptyline are examples. (16) Heat is my best friend. NEVER USE ICE. Ice can cause RSD to become worse. (17) Don’t get down because of your disabilities, but rejoice in the abilities you still have. Remember you are lucky to be alive. In the end you can win if you never give up. (18) Do things that remind you of your life before RSD. Do things you enjoyed before you became ill. Don’t forget that you are still a person. You are not this disease. (19) Companion animals are proven to decrease pain levels by releasing hormones in your brain that make you feel good (natural pain killers and anti-depressants). (20) Don’t become a shell of who you used to be. Become a new you. Attitude goes a long way. Those are 20 recommendations based on my experience. Everyones experience is different. I’m not a doctor, please refer to your doctor for treatment recommendations. I cut almost my whole family out of my life till they came around to understand. It took that for them to take this seriously. No matter what happens I hope things improve for you and I will be praying for you. Please don’t ever give up. My email is rcombs0053@yahoo.com if you ever need to talk or you can get me on facebook at https://www.facebook.com/RobertVincetCombs. I share an account with my husband. God bless you. I hope this comment find you in a better place.

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