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This section is a place to share stories about Living with RSD
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RSD Has Changed My Life
by: DonnaM
on Wed, Sep 12 2007
I fell and broke my pinkie finger on my dominant hand in early May 2006.
I can’t remember feeling pain that intensely before in my life.
My experience at the emergency room hurt almost as bad as my hand did. I was treated like I was some sort of “cry baby”, or “whiner”.
I’ve had 3 other broken bones in my life thus far, one of them I didn’t even get treatment for, another I waited 3 days before I went for medical help.
I am NOT a Whiner!
They finally gave me a pain shot, the relief was almost instant ( Thanks be to God)!
I was sent to the orthopedic surgeon because my finger was separated from the rest.
My Surgery was scheduled the very next morning.
In the 5 days prior to the surgery, I had stayed medicated, the temporary cast caused me extreme pain ( or that’s what I thought at the time)
When I woke up in the recovery room, the pain was so intense, I started sweating and shaking.
I stayed that way.
The pain would not go away.
I thought the cast was too tight or maybe my hand was too swollen.
Another week went by before I went for my check up.
The Dr. tapped my middle finger which was sticking out of the cast.
I almost fell to my knees!
I had no idea why a little tap to an uninjured finger could cause me to almost scream.
I went home, stayed “medicated” and did ok as long as I had medicine in my system.
3 weeks later I got the cast taken off.
I was so happy to get that monster off my hand!
Well, that feeling was short lived.
I chalked it up to “Cast i tis” .. you know, the feeling you have of stiff wrist, and unbendable fingers etc.
My Dr. suggested Physical Therapy, but, I refused it, saying that I would do all the “exercises” at home.
If the truth be known, I didn’t want anyone to touch it!!
a week later, the Dr. insisted I go to therapy. He explained how the bone was healed, but, that he was afraid I may have something called RSD Syndrome.
I had no idea what he was talking about, but, it scared me.
the Physical Therapy started the very next morning.
It was one of the worst things I have ever had to endure!
I couldn’t do the simplest of “exercises” .
After 3 weeks of trying to squeeze, lift, pull, and touch, they told me I was wasting their time.
They also told me that my injury was in my head.
I went home crying, believing that something was wrong with me not only physically,,, but mentally too.
The pain I suffered from constantly never ceased in those days.
mine was like a bolt of electricity running through my limb down to my finger and side of my hand every few seconds.
It was just like being shocked all the time!
My hand would “jump” slightly every time this happened.
I went to the Dr. the next day, expecting him to be angry also because I couldn’t do the exercises at Physical therapy
Instead, he calmly apologized for sending me there, stating that not many people knew or understood RSD
He asked me to let him try one other approach. I said alright.
That’s when I started going to the Pain Management Clinic.
I am to this day still a patient there.
I started physical therapy again.. only this time, it was with a therapist who was trained and knowledgeable in RSD.
I was thankful for finally finding a place that not only understood RSD, but, helped me to understand it as well.
I take Lyrica twice a day along with hydrocodone.
The combination has been a blessing for me.
The Lyrica has tamed my “electric shock” immensely. It isn’t constant anymore, or as intense.
the pain is still always there though, but, I have learned to deal with it.
This site, was a tremendous help to me.
I was thankful (and still am) that a site such as this one is out here for others that may go through a similar experience.
Finding out I had RSD was devastating, but, having access to information about this disease has been a comfort.
I’m learning day by day to live with RSD and have even started learning how to use my other hand to do everyday things, like pick up clothes my 13 yr old throws down, or clean out a sink.
I still struggle, but, I’m not giving up.
I hope you don’t give up either.
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September 2007
- 2 years with RSD - by Lori - (Tue, Sep 25 2007)
Its been 2 years since I was diagnosed with RSD and the only thing that has changed is the size of my leg. I broke my ankle and within weeks the leg swelled to twice its size, the coloring changed and it burned like someone set me on fire. I have a hard time wearing shoes, walking distances and steps.
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- Left Hospital with RSD - by Lori - (Tue, Sep 25 2007)
I went into the local hospital for a kidney infection and 8 days later I went home with RSD. The nurse had placed the IV incorrectly and I had a reaction to an antibiotic that caused clotting in my right arm, then RSD set in. It has now been 2.5 yrs and it has only temporarily improved with nerve blocks and vicodin.
[more..]
- rsd and spinal cord stimulator - by ML - (Mon, Sep 24 2007)
I would like to know if anyone has used a spinal cord stimulator and if it helped. I have had RSD for four years - it is now whole body RSD and the doctors now want to implant the stimulator after numerous failed blocks and too many drugs and too much pain.
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- Life with RSD - by claudna - (Fri, Sep 21 2007)
i was diagnose in 2000, and nerve bblocks surgery to relief stress on the nerves and every tape of pills their is. I was hit on my left hand by a burglar bar at work from a student.
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- I’m 15 yrs old and have RSD - by Amber - (Thu, Sep 20 2007)
My name is Amber. I am 15 years old and have RSD. I first got RSD when i was 2 years old. But I was finally diagnosed when i was 12. I have had a lot of compications with RSD. But any doctors I have gone to have been unable to treat me.
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- The doctors act like it magically disappeared! - by BB - (Wed, Sep 19 2007)
Seven years ago I had an achillies tendon repair and suffered horribly afterward. I developed RSD in that foot/leg and it spread to the other leg/foot also.
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- My RSD in remission - by dantesnana - (Wed, Sep 19 2007)
I had RSD. It started in 1993 after a flu shot. Instead of being localized in one area, it started in my feet and spread over my entire body. Every nerve burned and stung, hummed and vibrated.
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- My experience with RSD - by Jenna - (Fri, Sep 14 2007)
I was 9 years old when I was getting ready for a basketball game and I was coming down the stairs and tripped and fell. I had a weird pain in my right ancle and it hurt to move it. I was taken by my mother to the hospital to get some x-rays to make sure that I didn’t break anything… nothing came back on the x-ray and they simply told me that I spraned it and it would be fine in a couple of days armed with a pair of crutches I left.
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- My Story, My Journey with RSD - by Debbie - (Fri, Sep 14 2007)
I could have never imagined that a fall I took on a stairwell so many years ago that finally led to surgery for my shoulder to help 1) with the instability n the shoulder to help stop the ongoing pain I was having would turn into a lifelong journey of dealing with pain.
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- The pain is MOVING - by Kelly - (Thu, Sep 13 2007)
I hurt my left elbow at work in 1997. After my second surgery in 1999 my O.T. questioned my doctor if I had R.S.D. it hurt his feelings and he did nothing for MONTHS. I lost my marriage, my child is pulling away from me.
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- where do i try now? - by Linda - (Wed, Sep 12 2007)
In Oct 2006 I had knee surgery..the knee felt great for a few weeks after the surgery. Then the pain started again, couldn’t go up any stairs without practically screaming. They drained fluid off the knee did xrays and said everything was good. Several weeks later my right hand swelled up and was so painfull i knew something wasn’t right.
[more..]
- RSD Has Changed My Life - by DonnaM - (Wed, Sep 12 2007)
I fell and broke my pinkie finger on my dominant hand in early May 2006.
I can’t remember feeling pain that intensely before in my life.
My experience at the emergency room hurt almost as bad as my hand did. I was treated like I was some sort of “cry baby”, or “whiner”.
[more..]
- My Story - by Michael - (Tue, Sep 11 2007)
I contracted RSD in June 1989 after left knee arthroscopic surgery. The severe burning pain that I awoke with after the surgery was unbearable. After many months, appointments, tests, and procedures, I was diagnosed. I presently am on my third implanted morphine pump, and take a large amount of oral medications.
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- Yet to be undiagnosed RSD - by Diane - (Tue, Sep 11 2007)
In 2004,I has an accident involving my right arm, for several months I had every symptom from the pain, bluish olor, hot/cold feeling to my right hand.
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- Living with it - by Colleen - (Fri, Sep 07 2007)
I fell and broke my right wrist.I was diagnosed shortly after the cast came off. I have a lot of faith in Dr S. in Phila. He wanted me to go to Germany to be put into a coma for a week.
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- I have RSD & Need advice! - by Michele - (Thu, Sep 06 2007)
In 2005, I fell in a restaurant on wet cobblestone flooring, breaking both sides of my ankle. I was a temp & had no insurance at the time, and ER would not do surgery! They wrapped me up and sent me home.
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- HOPE FOR RSD SUFFERERS - by LT - (Wed, Sep 05 2007)
I too have had RSD since I was 24. I still have it today and I am 28 but I barely notice it. I can walk, not limp and I am not bed ridden anymore. After being mis diagnosed I learned I had to be my own doctor, and demand the BEST care.
[more..]
- Torturous nightmare - by BJ - (Mon, Sep 03 2007)
My RSD started after i fractured my left ankle Feb 1996, nerve blocks ,sympathectomies and suppressive, sedative debilitating drugs and nothing works, 1999 started work in wheelchair, 2005 pain increases, 2007 to dangerous to drive anymore,
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- The Pain is Real - by EW - (Mon, Sep 03 2007)
I suffered a major trauma to my left foot in December 2006. I had an x-ray and and I&D immediately after the injury. The pain was unbearable for 6 weeks afterwards. MRI’s and Ultrasounds were inconclusive.
[more..]
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