Tag Archives: RSD

If my life was a hockey game, I’d have a hat trick!

I was diagnosed with systemic Lupus and Fibromyalgia in Aug. 2000. I already had scoliosis, but never had any problems as a result of it, up until I was having Lupus related problems. Lucky for me, I lived as a military spouse on one of the best medical military posts in the world. The military had no reason to make me continue coming g to the office for ‘follow Suppo appointments, or running all kinds of UN necessary tests, at which the general public doctors are in my opinion,guilty of doing. So it took them only 9 weeks to diagnose mewith the symptoms I was having.

I was sick and had ‘flair ups’ for 5 years. I am very blessed, and ay times actually forget my ‘chronic’ conditions.

The hat trick comes in June of 2011. I was on a family fishing trip on a charter fishing g boat. When trip was over, I was disembarking the boat when my foot hit the ramp, it was wet and I went flying. Immediately my foot was purple! I kept repeating ‘I broke my foot’. The pain wasn’t immediate. I was embarrassed, and jumped up like I was OK.

That night, the throbbing and pain was horrible.

I went to my orthopedic the next a.m. not broke!! How could it hurt so bad?

Months went by, I continued to work because after all ‘it was only a sprain’. I made decision to go to a different doctor when my orthopedic seemed disappointed that he wasn’t going to be doing surgery on a broken leg. I ended up having surgery for torn meniscus. But only after being told I have RSD. Before she could do the surgery, I had to start spinal blocks. Since the day I was diagnosed with RSD, I have gone through denial, depression, anxiety, anger, resentment, confusion, etc.

I have heard ‘well maybe if you get up and move around’ so many times I could scream!

There are days that my foot/ankle look fine, yet I’m in pain. People always say,’well at least its not swollen’ yet I wish it was so I at least had something to show for the inner pain that I’m in!

As I lay here with my leg elevated, my foot is purple and ICE cold to the touch, yet its on fire!!

I wish I could get my family to understand, I may look OK, yet I’m dying inside. Every day I wonder, ‘where will this RSD take me?’ Why is it that I have 3 chronic conditions, with no cure? What can I do to change my situation? Do I want to live my life with this stopping me from doing the things I enjoy?

The depression at times sets in and I feel sorry for myself. My life flashes in front of me, what have I done to deserve all this?

I wonder what its like to be someone else. To live life healthy, happy and free from pain. I realized today, I have lived almost my entire life in pain. Mostly physical, which ends up emotional pain.

I tell myself, this to shall pass……but will it?

Why do I have so many chronic conditions?

For years I had different symptoms, illnesses etc. I was told I was ‘it was just in my mind’. Although I knew it wasn’t and I had legitimate illnesses, I started to wonder myself ‘maybe I’m going crazy?’

In Aug. 2000, my than husband was stationed at Fort Bragg N.C.

My daughter(13) at the time and myself were living there by ourselves, far from any family. My husband was in Missouri, and I had no one to turn to but myself and God.

I will never forget the day… I had been having so much pain in my entire body,radiating in my back. I couldn’t state awake, yet I couldn’t state asleep either. I would be driving my daughter and I, and have blackouts. Would wake up driving, not no how I got there. My daughter Chelsea had no ideal would call my mother who lives in Floryida several times a day. Acting each time like all was well.

Than came the day, I had so many tests run, blood taken, MRI’s, cat scans etc. I got the call telling me I have systemic Lupus and Fibromyalgia. What in the world ate those? I said. I was Tod to clear in and we would discuss my options.

I immediately called my mom in Florida and went and picked my daughter up from school. I thought,’maybe I will just leave and go back home,and everything would be ok’.

My wonderful mother made the decision to come to Bragg for few weeks. I again, put on that I was OK.
I was pretty much bed ridden for 2 months, was on a lot of steroids, pain meds etc. Felt defeated. Went through bouts of depression.

Second guessed my doctors diagnosis, but couldn’t figure out why I was feeling so aweful.I finally stopped fighting my emotions of the stigma of having a chronic condition.

As the years have passed, I have had my ups and Downs. I have been mostly good.However when I do have flair ups,there bad. I have to physically and emotionally come to grips with letting it run its coarse. ‘This to shall pass’. Its been my experience that the emotional is at times, much worse than the physical.

In June 2011, I fell on a boat, jury my knee and ankle. After months of MRI’s, etc. I ended up with yet another chronic condition RSD!!

I have decided that life could be worse, I could have terminal cancer, brain tumor, heart attack, stroke… My attitude is a direct reflection of how I feel and I have to always remember, it could be worse ๐Ÿ™‚

My Life with RSD

RSD means you don’t have a normal life. Things that mattered before RSD, do not matter now. The cold, windy, wet days when you can’t even go outside. It’s like having a demon on your back, even though you want to fight him, he won’t quit.

My name is Sylvia Brown, and I have had RSD since 2002,after a minor bicep tendon repair that turned into two surgeries, as the left arm was useless, and I’m left handed. It all begin as a simple surgery that meant I could go back to playing racquetball, tennis, weightlifting, etc. I’ve always been an active, sports-minded person, enjoying a variety of things. That came to a dead stop, one month after the surgery I was in the worst pain I’d ever had, and I’ve had 3 children. Even hard labor does not compare. Suddenly your friends who you thought were friends just quit coming around. No one knows what to do, so they do nothing.

At one time I was on 31 pills a day, still with hardly any pain relief, living in a dull, aching, burning, foggy life. I wanted to kill myself, because I couldn’t stand to watch my 9 year old daughter, Raechel, taking care of me, when she should have been out playing with her friends, like a normal child. I spent my days in bed, my massage chair, and the couch, crying, screaming in pain like I was being punished for something I didn’t do. I spent 31 days in the hospital, after being prescribed Cymbalta, had an allergic reaction that caused hallucinations for 3 weeks. I wasn’t myself. Something had taken my life over, and I couldn’t do anything about it. I tried treatment after treatment, visiting MD’s who said I was fine, which made me feel even worse. I have been disabled for 9 years, living with my husband and last child, Raechel. I’m doing better now than before, as I’ve discovered ECT, Electro Convulsive Therapy, which stimulates my damaged nervous systems, allowing me to have immediate relief of pain. Picture, if you will, having a one ton rock crushing you, then being lifted off. It gave me my life back. I still have RSD, and I’ve only cried once this year, being mad at the world, asking my Father in Heaven why I had to have it. He gave me an answer. You need to carry on and help people to understand this disease. Care and compassion. Visit the chronically ill people who have no hope, and show them that there is hope, that God will return for them, and take away their pain, once and for all. Thank you for listening to my story. If I could say one thing that would help you to tell others who suffer with this disease, I would say tell them you can’t imagine having the pain we suffer. Tell them you care, and you love them.

Bless all of you who suffer from RSD, and other chronic pain diseases. May the good Lord grant you the ability to help yourselves and others.

Love and peace,

Sylvia Marie Brown
RSD Support Group Advisor

I am not giving up in the least. I will always fight this. I will fight it until I get better.

I started physical therapy Monday. They showed me them exercises. I have a lot of pain when doing them. More on the right side. Its always the right side. I can do them. I have been told at this time, chiro care is not good. Until I get a MRI.

I was in a serious car accident 10 years ago. Shattered the bone in my right arm. Had a rod, pins, wire put into the arm for six months. For bone to grow back. Took a year to get use of the arm back. Since then, downhill. Not the same since. I am lopsided in posture. The right side of my body is taller by 2 inches. Chiropractors have tried to straighten it. My hip is also not right. I most likely got a pinched nerve. I have also scars that took quite a time to accept, but have now.

Then came Fibromyalgia. Been in two whiplash car accidents now, in the last 2 years. Both times it causes the pain and everything to flare up. All the accidents too, were not any fault of mine. I have tried everything one can think of. Really. Its to the point I can not afford it anymore. I have no health insurance. Its the last 10 years I have put the weight on.

I thought too that low carbing would help. Take the weight off, help with the pain, you know carrying around extra weight does not help. I started with over the counter pain relievers. Worked my way up to Tylenol threes and fours. Then to vicodin. Now percocets. Thinking of drying myself out on the pain killers. I am tired of taking them. They can cause damage to the liver.

After the first car accident. After recovering from the surgeries. I just let the mild pain go, didn’t go to a doc for it. I wish I did. Sometimes I think if I did go early on for the pain, then all my physcial health problems wouldn’t of gotton so out of control like they are now. I have and use a handicap parking plackard too. I also use a tens unit.

Right now suffering from migraines, ear aches, jaw pain, tingling in the face, hip pain radiating to the front and down my thigh. Lower back pain, neck pain, knee pain. Morning aches and pain, hot showerd do help.

The diet did do wonders, until the newest car accident. I was able to stop using the cane, to walk long distances. Since low carbing, I have had less pain in the hip and leg. Migraines have let up. I been struggling to go to work. Been through Vocational Rehab even. Its all down in medical files, how well I improved. I got a lawyer, not going to get screwed this time around with the accident. Since the accident, chronic pain has re entered the picture. Well, its always there, in less degrees and more stronger ones.

I remember when I first did a search on Chronic Pain and Illness. Its shattering to say the least. To be in my thirties, and feel as bad as I do. At one time I was almost in a wheelchair.

I am not giving up in the least. I will always fight this. I will fight it until I get better. Got a job interview, as a leasing consultant coming up Thursday. It pays so well, and they have a hot tub and exercise equipment I can use if I work there and get a job. Its close to home, so less driving time. I have a good feeling, I will get the job. The pay is very good too. Also I applied to back to school, and do what I always dreamed of doing. Graphic design. I am a born artist for sure. Never too old to follow your dreams. I wish I woulda done it years ago though. I start in the fall.

So, Luna, don’t wait. Please go to a doctor. If you feel something is not right, get it checked out. One thing can lead into another. I wouldn’t want my worst enemy to feel like I do. It could also be posture related. Chiro care can help some. Physical therapy too. I can understand that its hard to do it, with no insurance. Try some free clinics, or low cost ones if you need to. I found the best understanding wonderful doc through one. Good Luck!

By Sunshyne

CRPS treatment with ketamine

From a press release: Thirty-three patients with unrelenting CRPS (Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy – RSD) were treated using this novel approach developed by Dr. Graeme E. Correll, BE, MBBS, in Mackay, Queensland, Australia. Pain relief and the duration of this relief appeared impressive. After only one treatment, there was complete relief in 76% (25) of the group. 54% of the patients remained free of pain for more than three months, 31% for more than six months. Although the relief of pain did not last indefinitely, it was noted that following a second treatment given to 12 of the patients, the outcome was improved. In this retreated group 58% remained pain free for more than a year and almost 33% experienced relief for over three years.

Intrathecal Pump

An Intrathecal Pump (“Spinal Morphine Pump”)? is a specialized device, which delivers concentrated amounts of medication(s) into spinal cord area via a small catheter (tubing).

Am I a candidate for Intrathecal Pump Implant

Currently at TPM, Intrathecal Pump is offered to patients with :

Chronic and severe pain, who have not adequately responded to other treatment modalities. Some of the examples are failed back syndrome, cancer pain, RSD. These patients receive infusion of painkillers such as Morphine or Dilaudid.

Spastic disorders such as Multiple Sclerosis, Spinal Cord Injury – associated with muscle spasms. These patients receive infusion of an antispasmodic medication called Baclofen.

What is the purpose of it?

This device delivers concentrated amounts of medication into spinal cord area allowing the patient to decrease or eliminate the need for oral medications. It delivers medication around the clock, thus eliminating or minimizing breakthrough pain and/or other symptoms.

How long does the procedure take?

It is done in two stages. In the first stage, a single injection is made to assess effectiveness and screen for unwanted side effects. If this trial is successful in relieving symptoms, then the permanent device is placed under the skin. The patients have to meet certain other screening criteria before implanting the pump.

Will the procedure hurt?

The procedure involves inserting a needle through skin and deeper tissues (like a “tetanus shot”). So, there is some discomfort involved. However, we numb the skin and deeper tissues with a local anesthetic using a very thin needle prior to inserting the needle. Most of the patients also receive intravenous sedation and analgesia, which makes the procedure easy to tolerate.

Will I be “put out” for this procedure?

The placement of the tubing is done under local anesthesia with patients mildly sedated. The amount of sedation given generally depends upon the patient tolerance.

For the pump placement, patients are given stronger intravenous sedation and analgesia.

How is the procedure performed?

It is done with the patient lying on the side. Sometimes the tubing is placed with the patient sitting up. The patients are monitored with EKG, blood pressure cuff and blood oxygen-monitoring device. The skin is cleaned with antiseptic solution and then the procedure is carried out. X-ray (fluoroscopy) is used to guide the needle for inserting the tubing.

Where is the tubing inserted? Where is the pump placed?

Tubing is inserted in the midline at the lower back. The pump is then placed on the side of the abdomen.

What should I expect after the procedure?

If the procedure is successful, you may feel that your pain may be controlled or quite less. The pump is adjusted electronically to deliver adequate amount of medication.

What should I do after the procedure?

This procedure is normally a day-procedure and patients are kept overnight for observation and pump adjustment.

How long will the pumps last?

The medication contained within the pump will last about 1 to 3 months depending upon the concentration and amount infused. It is then refilled via a tiny needle inserted into the pump chamber. This is done in the office or at your home and it takes only a few minutes.

The batteries in the pump may last 3 to 5 years depending upon the usage. The batteries can not be replaced or recharged. The pump is replaced at that time.

Will the Intrathecal Pump Implant (“Spinal Morphine Pump”) help me?

It is very difficult to predict if the procedure will indeed help you or not. For that reason a trial is carried out to determine if a permanent device (pump) will be effective to relieve your pain or not.

What are the risks and side effects?

Generally speaking, this procedure is safe. However, with any procedure there are risks, side effects, and possibility of complications. Please discuss your concerns with your physician.

Who should not have this procedure?

If you are on a blood thinning medication (e.g. Coumadinร†), or if you have an active infection going on, you should not have the procedure. The patients also have to meet certain other screening criteria before implanting the pump.

Additional information?

More detailed information is available from the manufacturer of this device. At the time of consultation you will receive a Synchromed™ Infusion System Patient Education Booklet. Additional information is also available at the Medtronics™ Web Site @ www.medtronics.com/neuro/apt/faq.html.

In chronic pain for 14 years

It’s not something that others can easily see

by Shannon Leidig

The author is a chronic pain sufferer who lives in Washington County. She wrote this as part of the educational component of Pain Awareness Month.

Who would ever have thought that my life would change forever on Tuesday, Feb. 13, 1990? Until then, I was a normal college student, majoring in music therapy and piano at Shenandoah Conservatory.

That morning I awoke with my hand in severe pain and very swollen and waxy looking. The pain was so intense that I could not finish my piano practice. A nurse gave me ibuprofen and said if it didn’t improve, I might have to see an orthopedic surgeon.

That night, my friends and I went to Subway. Ever try to eat a sub with one hand? Not very pleasant, but necessary, because my right hand was in severe pain. I did not sleep that night or go to class the next morning. It was the worst pain I had ever felt. Little did I know it would get worse.

At week’s end, I went to see the surgeon, who thought it was carpal tunnel syndrome. She splinted my hand and gave me medication. Over the weekend the pain became even worse, so I saw her again on Monday and had a cortisone injection, which hurt like heck! I then had nerve conduction studies and was told my hand was “dead.”

I was scheduled for a carpal tunnel “release” Feb. 22. When they came to prep me for surgery, they tried to scrub my hand. I could not tolerate even the slightest touch. I was sedated so they could finish prepping me.

As I recovered from that surgery, the pain in my right hand was still intense, but then my left hand began to hurt. Even closing a cupboard door or driving over a bump in the car would bring me to tears.

My surgeon knew something was going on, but could could not understand what. She knew she had to alleviate the pain in my left hand, so I ended up having carpal tunnel surgery on that one as well.

My left hand was bandaged like a boxing glove and I still could not use my right hand. I could not feed myself, bathe or even go to the bathroom by myself – very humiliating for a 19-year-old. My father would feed me like a baby, but my mother ended up doing everything else.

I recovered at home from both of these surgeries. Then both feet started to hurt. Now, I thought, I am really starting to lose my marbles.

I ended up going to Good Samaritan Hospital in Baltimore. In late March they called and asked me all kinds of questions about the pain, the color of my skin, if it were waxy, if my extremities were red or blue or if I was sensitive to touch. They diagnosed me with Reflex Sympathetic Dystrophy Syndrome and I became a patient there.

They put me on high doses of steroids and antidepressants, stating that it would help “ease the pain.” The drugs made me eat and become a very nasty person,

I was discharged after 10 days and returned to college. Friends helped to catch me up on what I had missed. I finished the semester but it was very difficult.

My medications sent me through many mood changes. One night I cursed out my mother. I was so angry I ripped the phone out of the wall and said that I wished she was the one who was sick. I regret that comment to this very day.

By Memorial Day, the pain had spread up both arms and all the way up both legs. I could not walk, so I used a wheelchair. I became a patient at Good Samaritan again.

The doctors thought I was crazy and brought in psychiatrist after psychiatrist. Being on steroids also increased my appetite, so I went from 105 to 190 pounds. Talk about embarrassing!

I went to another physician who took me off all of the medications and began performing nerve blocks, both stellate ganglion and lumbar sympathetic blocks. For the first time in months, I had some relief.

This doctor believed me, which was a huge help. He and his staff encouraged me to go back to school and to continue to do things, being mindful of my limits due to the pain. I transferred to Hagerstown Community College and Shepherd. I was determined to obtain my degree and have a life. It took me six years, but I graduated cum laude with a bachelor’s degree in psychology, and a minor in music.

I am now 33. I still have RSD, although it has a different name now – Complex Regional Pain Syndrome. I have seen many doctors at the nation’s best hospitals. Some believed me, some didn’t! I have been on many medications. Some helped, some didn’t.

Once I almost died due to an overdose. I have had numerous surgeries and yet the pain is still here. It has never gone away!

The pain in my arms and hands is almost nonexistent now, but my legs are a different story. The pain shoots and burns, as though a volcano will erupt inside. And my legs jump inside, like jumping jelly beans. The intensity of that and the pain brings me to tears.

I do not drive much because I do not trust my legs. They are not strong and I lose sensation and would not want to cause an accident.

My career goals are not what I had originally planned, but I continue to work. One, because I can work, just not full-time, but also because of the high cost of treatments, medications and insurance.

There are days when it is a struggle to get out of bed. I walk every day because I have been told that if I do not, I will lose the use of my legs.

My family has been very supportive, especially my parents. I am so blessed to have them and am very thankful for all they have done. My faith and relationship with God has also been a huge source of strength.

These 14 years have been quite painful, not only physically, but emotionally as well. I have fought many battles. With my family, who didn’t understand what was going on and with friends, who got upset when I had to cancel plans because my body wouldn’t cooperate.

I have had to fight doctors, nurses, and the entire health-care system. Some nurses at a local hospital told me that when they know they must tend to pain patients, they do, but only do it reluctantly.

How would that make you feel? Employers do not have a clue when it comes to dealing with pain. I work from home, doing transcription, but I also accepted a job so I would have health insurance.

When employers hear the words “chronic pain,” that automatically sends a red flag, meaning lost time. No, I can work and I am willing and want to work. There is nothing wrong with my brain, just my legs. It has been a nightmare, but there have some good things that have come out of it. Even though there are days when I feel 133 and just because I have a chronic pain condition does not mean that I have to look sick.

People do not see that it takes me quite a long time to get up and moving in the morning. I do not sleep well at night and sometimes it is when “normal” people are getting up when I finally get to sleep. My sleep is not restful and there are days when I am just dragging to get through the day and pray that tonight will be the night I can finally sleep.

These 14 years have taught me a lot, too, in that I never take anything for granted. Also, if a person says they have pain, believe them. Even though each person experiences pain differently, pain is real and it does exist.

I want to try and make a difference so that the other people who suffer in pain do not experience what I have gone through. Pain is a part of me; it is not who I am. My pain is with me 24 hours a day, seven days a week. I have good days and not-so-good days. There are days when it is truly a struggle to get by, but I have my faith to get me through and friends, family, a very caring doctor and supportive nurses who walk with me each and every step of the way.

Shannon Leidig is a Washington County resident. There will be “public listening” for chronic pain patients, their caregivers and those want to support them on Saturday, Sept. 25. For directions, call 301-393-4855 or visit www.marylandpaininitiative.org.