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Chronic Pain Stories

A fall at work

Hello, Very scary stories. 2 years ago I fell at work. My left shoulder caught equipment and tore my
rotator cuff. I landed hard on my tail bone to the left side. I began PT. Mostly for the shoulder even
though my spine/left buttock and pelvic area were more painful. L & I decided that they would do the
shoulder surgery to repair the tear. I had two surgeries. In the meantime my left leg and lower back,
side to side mostly in the deep core of the buttocks and pelvic region was extremely painful. I could
not sit, walking was difficult and standing was nearly impossible. I spent about 1 1/2 years putting all
my weight on my left leg/side. I noticed that my left foot slowly started to hurt. It began on the outside
area of the foot and it was so painful to the touch. The pain spread to the heel area. Each passing
day the pain began to increase. I had severe foot cramps . I would just scream in my bed at night.
The cramps lasted for hours. Suddenly I could not put any weight on the foot without severe pain
that paralyzed me. One night, the pain woke me up and I ended up at the Emergency Room.

My L & I Dr. gave me strong pain meds, put a water cast on, held up by an air boot. He sent me to a
foot Dr. who said I was suffering from Plantar Fistula. He gave me a series of 2 steroid shots which
helped in the heel area . The Dr. said it would come back. Then the pain changed , I could feel pins
and needles at all times. I noticed the swelling and I even became sensitive to the touch and the
surrounding air. I went back to the foot specialist who told me it was not a foot problem but a back
problem. L & I is refusing to help. They are saying it is not part of the original injury. My Dr. is trying to
tell them that it is due to the shifting of all my weight to the left foot and it has led to a new diagnosis
called RSD. My doctor confirmed the RSD through a nerve test and a bone scan. L & I is refusing to
cover my treatment. I am not being sent to Seattle Medical to determine if the RSD foot is the result
of the fall I took. If the Dr. disagrees I am on my own to suffer with this crippling condition. I have
noticed that in the past couple weeks. My right foot is not swelling up. I still feel a pins & needles
sensation and it is also in my right hand now. I'm scared. L & I thinks I'm lying and that there is
nothing wrong with me. I can't sleep, walk, stand or sit without suffering for days or hours on end just
by taking a few steps or standing on my foot for a few minutes.

Terrified in Washginton

Who would have thought a Jeep could bring so much pain...?

It was a typical Friday morning at work. I was sitting at my desk on the
phone when I looked to my right and saw a jeep coming toward the building.
I worked in sales at a dealership in south Florida. The jeep jumped the
curb and hit the glass in slow motion pressing on the glass until it burst.
The jeep came through hitting my desk and left me pinned against the wall.
My initial injuries were just minor cuts and sprains, sore ribs and some
muscle pain. I was released from the ER the same day and returned to work
the next day. A few weeks later I started experiencing nightmares and burning
pain keeping me up at night. I had a MRI nerve conduction study, numerous
X-rays and blood work which came out all normal. I was send for a
psych evaluation and was diagnosed with post traumatic stress syndrome. Later
on, I was diagnosed with brachial plexus injury, muscle spasm, neurodermatitis
and cervical disk displacement. I was taking a combination of meds such as
neurotin, trazadone, lexarpo and adivand I was still in pain.

After a year of suffering, day and night. I was fired from my job after I had
given my employer a letter from my primary dr. stating that I was unable to
work at the time. Our intentions were to get me family medical leave to sort
through my medical issues and concentrating on getting better. I sank into a
deep depression from being fired and having to live in chronic pain. I finally
started seeing a pain management dr. who was giving me kenelog nerve blocks and
epidural blocks. I was paying for the pain management care myself. It came to
the point that the pain dr. told me that I would not get better and that I would
progressively get worse. This was the next to last time I saw him. My work comp
program sent me to a pain management dr. who told me there is nothing wrong with
me, however he agreed that I could only work 4 hours a day without lifting no more
than 5 lbs. and prescribing me oxycodone, hydrocodone, flexeral and lidoderm pain
patches. My pervious pain management dr. would no longer treat me because he did
not want to get wrapped up I possible litigations. I have seen at least 10 doctors
and none of them have mentioned RSD. I called my neurologist to see if he would
take the Medicaid that I just had been approved from and I was told he didn’t.
I need to consult with a dr. that specializes in RSD. I still do not have a
diagnosis, but I have every symptom, I have all four symptoms out of four in each
category of the RSD description. I was referred to a physiatrist by my work comp
dr. However, the work comp. administration refused to authorize the treatment. I
live every day with constant pain wondering who will write the next script for
pain and who will finally go against the Florida work comp carrier and admit
that I have RSD.

Jeana
Naples Florida

 

My Life of Chronic Pain

When I was 14, I was diagnosed with scoliosis, and had 3 spinal fusions before I was 20, with a very difficult time fusing. I spent much of my life as a teen in and out of body casts and hospitals. For 18 years Tylenol was able to keep my pain at bay. Unfortunately when I was 37, I began having major back pain once again. After 2 opinions, I knew that I had spinal stenosis and degenerative disc disease. I went to what I thought was a spinal specialist. Unfortunately he was just an ordinary orthopedist. The doctor was supposed to only remove one level, but in a disectomy/ laninectomy, he removed 4 of my lower lumbar discs and put 10 large pedicle screws in my spine. He put a plate in from the front and said that 2 screws came out but not to worry.

Three months later, my life of chronic pain began. I had near constant pain that ran from my elbows to my hands and from my knees to my feet. I began having seizures as well (and this all hit me on the same weekend). I had no idea what was happening. I was diagnosed with epilepsy and chronic pain. I do think the botched surgery had everything to do with my life in pain.

found out that I had never fused in all 4 levels, and that the plate had come out from the front and was embedded in my abdominal aorta. A surgery was done to remove the plate from the aorta, without killing me, plus fuse my spine from the front. It took 5 hours to remove the plate, and the surgeon said that, in a few days, I would need another surgery on the backside of my spine that would take 15 hours. I did not feel like I would live through this, so I went home in a body cast from my neck down to my right knee. The next year I had the 15-hour spinal fusion to repair the damage and to give my spine the support it desperately needed.

The body had supposedly healed, but the pain just kept getting worse. This was when I knew that I would suffer from chronic pain forever. I had come to the conclusion that an implanted pain pump on my spine was the best way to deal with the pain. I had the Medtronic's pain pump put in, and it worked well for about 8 yrs.

In August of 2000, I began screaming in the middle of the night with unimaginable pain. My husband was on a trip, so I called a friend (she had a broken arm), who took me to the Emergency Room. I was admitted, but they couldn't get the painful spasms and burning pain to stop. I needed help faster than I was getting it. When I finally got in a room, I could not even have the bed touch my skin. The pain doctor had an I.V. medication started, and it took a lot just to control the pain. They transferred me to another hospital that had better testing (or so we thought). The radiologist made a major mistake and he drained all the medication from my pain pump thinking it was spinal fluid. I was in pain that I don't want to remember for the next 12 hours since they had no idea of his mistake. The spasms were so great that it spread down to my right foot and curved it completely towards the left. It has never been able to be reversed. Also the ligaments in my knee were destroyed from the spasms that caused jerking for those 12 hours. Finally, my pain physician realized what had happened and he had my pain pump refilled. At this time, I was diagnosed with arachnoid's (this is when the scar tissue wraps itself around the nerves in the epidural space of the spine). My insurance only gave me a week for physical therapy. They did not know how to help me. My pain was controlled for a while with many other medications.

I was finally diagnosed with CRPS (RSD) by my neurologist in November, 2000. My husband left me at about the same time, so my parents moved up. They have lived with me ever since. I finally had a diagnosis, but what treatment? None has ever been given to me except medication.

In 2005 my RSD began spreading for the first time. It has spread to my left foot now and my right foot. Before it spread I had uncontrollable trembling in my legs. I am sure that this was when it spread. It is now in my upper right leg, groin area, upper leg, left foot up to my knee, my right foot now, and my lower arms. It also burns up my buttocks before it rains and sometimes in my body all around.

Denee ~ USA

 

RSD for 19 year's

I've had RSD since I was 15. Back then, they didn't know a whole lot about it at all-even less than they do now if you can believe that! During my second year of high school, a student had accidentally stepped on my foot with one of her crutches and it broke and RSD resulted. You know how it goes...pain, but nobody knows why. They kept X-raying my foot, but it was healed so I tried to ignore it for years.

Then I hurt my knee, had surgery for that and that pain didn't go away either. Still, nobody knew why. Three years later, I finally found a doctor who knew about RSD and diagnosed me with it. I did the blocks, more meds than I'll ever be able to remember, calcitonin injections. Nothing helped. They told me I should have a sympathectomy so I did. They thought this would "cure" the RSD. It didn't. That surgery is the biggest waste of time I have ever gone through. Besides not helping things, it just made things worse. I don't recommend it at all.

After years of trying to deal with the pain and ten surgeries later, I found a pain doctor who knew what he was doing. More meds and then the SCS [spinal cord stimulator] trial. That didn't help me, so I finally had the morphine/bupivicaine pump put in two and a half years ago. That has helped me so much. It's the best thing I have ever done for the RSD.

Sharon ~ USA

 

From something so small.

At age 22, I tripped over a child's gate while helping a friend do some work at his house. I knew I had at least sprained my foot/ankle but oh well I thought I've done it before. So I just kept on doing as I was.

Five days later I went to ER because in the 5 days since I had hurt my foot temperature had not normalized, my right foot (the injured one) was swollen, purple and much, much cooler than the left one. (Like summer and winter). The doctor on call could not diagnose it, nor could the next 4 doctors I saw. Then, after many, many months of pain and various doctors telling my that I would just have to deal with it, or that it was all in my head,I was diagnosed with a severe plantars sprain.

Well the injury did not heal like it was supposed to. Finally, 13 months after the initial injury I was finally diagnosed with RSD. I thought things would get better once I had a specific diagnosis but I was so wrong. 3 months after being diagnosed with RSD in my right foot, "the beast" spread into my right arm and hand. Then after another 6 months the symptoms started to show up in my left arm and hand. So now here I am, in constant pain and discomfort (like many people with this "Beast") that is only just bearable with a mix of 3 different pain medications. I try to console myself though, after all this could be worse, couldn't it?!?!

Jason ~ USA

 

More stories to come, please check back often.

Do you have a story that you would like to have posted here? Email us at: stories@usarsd.org



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