Living with RSD

On December 2, 2006, I went out with my husband and a friend of ours for my birthday. We took the trolley downtown so that we wouldn’t have to drive at all. We had such a wonderful evening out. Patrick danced (club dancing type) for the first time in 13 years. It was magical.

@ 11:30-11:45 pm we decided to head home. I know, early, but at 28 I enjoyed getting up the next morning and having my day be mine. After crossing the street, we were walking on the sidewalk, I stepped onto a covered manhole (you know the hole in the street that workers go underground to fix things - sewers, etc). The lid tipped in, my leg went in with it, up to my right knee, I twisted sideways, landing on my hip and my elbow on the concrete. I hit the concrete so hard I bruised my elbow bone.
I called 911 and an ambulance, police officer and fire truck all showed up just for me. They determined nothing was broken and since I was out with Patrick and our friend, I didn’t want to leave them to take the trolley home, so we called my brother, he came and picked us up and took us back home.

All the research I have done on RSD states that most patients see an average of 5 doctors before finally getting diagnosed. I saw all 5 within the first 5 months. I was begging and demanding help from every one of them. I was in constant, crying, distressing, painful, etc…pain. I went to the emergency room the next morning. I figured that even though they determined I had NO broken bones, I thought well I could have a fracture. The pain was excruciating. The ER determined I had contusions and abrasions. No x-rays were done and they sent me home with a note to see my Primary.

I saw my primary by the end of the same week. He referred me to physical therapy I went 3 times. The little device they use to get deep into the tissue and muscles(?) hurt me immensely. The exercises, while light and not much, caused me to swell up bigger than I was already swelled up. Plus my foot was swelling up and wouldn’t even fit into my tennis shoes. On the first of January, my knee gave out on me, causing me to fall onto my left knee. Back to the ER I went. This time they did an x-ray based on the fact that my knee gave out. They found NOTHING wrong. I called my physical therapist and he referred me back to primary with a note to go to Orthopedics.

So by the end of January I had an appt with Ortho. In February, I had my first MRI Again, NOTHING was found to be wrong. In fact, the doctor said, “I wish I had knees as good as yours.” I cried. I couldn’t understand how nothing could be wrong. I was then referred to Physical Medicine.

Physical Medicine doctor checked me out and couldn’t place why I was in pain like I was. She referred me to Water Therapy.

In water therapy is where I came across RSD I enjoyed water therapy as it felt great to make my thigh stronger. However, the pain after was terrible. It would put me out of commission for 2-3 days, maybe longer. At this point as it was I was already very limited in what I was doing or where I was going.

I came home from my water appt, and did boocoo amounts of research. I read the beautiful words, “if diagnosed and treatment started soon enough, the better the chance to reverse the permanent aspect of this condition.” I called the Physical Medicine doctor and asked her to please refer me to Pain Management. She did.

My first treatment scheduled through Pain Management was a Nerve Block. I had it done in May. It lasted about a week, maybe less. I informed my doctor, and he stated that the Nerve Block is used as a diagnostic tool and if we were to do another one it might last a little longer, but we would be right back in the same position after it wore off. So he stated that he would like to schedule me for the Spinal Cord Stimulator. It was implanted Aug. 20, 2007.

I do not have complete relief. However, I am not bedridden from the pain as much as I was before. Another bad thing I noticed happening was sweating. I would get into the shower (which wasn’t too often either), get all cleaned up, and the moment I stepped out of the shower I was all sweaty again. I am not talking about little sweat dripping down your face, I am talking about buckets and buckets pouring down your face and back and arms and chest and everywhere. Upon placement of the stimulator, my sweating is now at a more manageable level. I still have moments of sweating, but nothing like it had become.

Recently, I was diagnosed with Fibromyalgia. Upon speaking with my pain management doctor, we determined that I had myofascial pain syndrome. If you click on each word, I have provided links to descriptions of each. It seems to be a never-ending process, and hopefully my family can deal with me long term. LOL