My Story: Learning to Live with RSD

My Story: Learning to Live with RSD

My journey with Reflex Sympathetic Dystrophy (RSD) started in early 2006 after I had surgery.  I had been diagnosed with thoracic outlet syndrome, so I elected to have surgery to remove the first rib on my left side.  The rib was removed by going under the arm to access the rib cage.  Right after the surgery I knew something was wrong.  My left arm was sensitive and painful.

I went to my family doctor who ruled out everything from lupus to breast cancer, which took months.  I was in horrible pain.  I was also sent to a rheumatologist and a vascular surgeon.  None of them knew what was wrong.  My doctor ended up telling me, “You will just need to live with some pain.”  I couldn’t accept that.

I pressed further for a solution.  I ended up going to a different Internal Medicine doctor who finally diagnosed me in 2007 with RSD in my left arm. We suspect that the nerves were damaged during the surgery and never healed correctly.  I had already been through so much just to find out what this was – I had no idea the journey that lay ahead of me.

Beth Fredrickson and family.

Beth Fredrickson and family.

While I finally had a diagnosis, there was still the challenge of getting it under control.  I went through two more years of trying out medications and ruling out ones that I couldn’t take due to side effects.  It was affecting my job performance and my family, and eventually developed into depression and loss of hope.

I was on narcotics 24 hours a day. Working a full-time job became almost impossible.  I spent the weekends sleeping.  My arm was discolored, swollen, on fire and sensitive to touch or air movement.  I saw a pain specialist who said that I needed to be in rehabilitation four times a week.  I would have had to go on disability and would have lost everything including my job, my house and cars.  That just wasn’t an option.  I had to do something else.

Through an online blog I ran across a person here in Minnesota that was seeing a pain specialist/spine surgeon for RSD. I made an appointment to see that doctor.

After assessing my situation, the pain specialist/spine surgeon felt that medications weren’t going to be a solution alone and that I was an excellent candidate for a spinal cord stimulator.

After deliberating what my options were, I elected to take the chance and have the stimulator implanted.  With the high probability of RSD moving to my right arm, I had leads implanted to control both arms. Thankfully, the doctor knew this, because a year later it did spread to my right arm.

Upon the implant of the stimulator, I had immediate relief of 70% of my pain and the sensitivity was gone.  I was able to wear long-sleeved shirts again without pain.

Anyone who deals with chronic pain knows that nothing will take away all of the pain.  I’m still on some medication but it has been reduced and without daily narcotic medication.  The good days now outnumber the bad.  The winter season is still hard for me and I have flares every now and then; but my life has been dramatically improved.

My journey with RSD will never be over but I am determined to keep pushing forward.  I have learned that there is always hope and tomorrow is a new day.

Beth Fredrickson lives in Farmington, Minnesota with her family.

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Authored by: Beth Fredrickson

There is 1 comment for this article
  1. Iraida Lopez-King at 10:39 am

    I would like to tell my story how my Bilateral implant surgery instead of giving me happiness has provided a stressful and painful life. It could serve as a warning to patients that go to clinics, listen to their doctors and looking for answers as I did. The problem that happen is that since this operation is done every week and according to the doctors “without problems at all” they closed their eyes and didn’t listen to my claims. Instead, decided to ignore the complaints, rather acting in a very unprofessional manner in front of me. A year passed and after much of the incredible pain and suffering I had to endured by then a nerve damage to the trigeminal nerve, the 5th Cranial Nerve had already occurred. I had to go thru a second surgery to replace one side implant, but unfortunately, no remedy to the damage could be done, it was already too late. After 3 years a new neurologist has revised my case and reevaluated as a CRPS condition instead of a TNA.
    I have nerve damage in my cranial nerves and is progressive.