Living with RSD

Unlike many here, my RSD didn’t occur until recently. My story is long, but I will try to make it as short as I can.

In August, I went to my PCP as I had a pain in my heel, but could not find anything wrong that would cause pain. I basically went because I am flat footed and have diabetes. The PCP had x-rays done and they found a heel spur and diagnosed plantars fasciitis. However, the DR that read the x-rays must have seen something, as next thing I knew, I was scheduled for an MRI of my foot. Although nothing stood out, I was next scheduled to see an ortho Dr.

After spending some time with me and having me do all kinds of things with my foot, the ortho ordered and MRI of my lumbar spine and sent me to a neurologist for an EMG. The MRI showed a few minor problems with my lower spine, but the EMG was conclusive for neuropathy of the L-5 and S-1 nerve as well as tarsal tunnel. Back to the ortho I went and in 5 days, I was under the knife for tarsal tunnel release.

I was told that I would be back to work originally in 5 weeks. I was on FMLA and short term disability for 12 weeks while I tried to heal from the surgery. The ortho put me on lyrica and darvocet to begin and eventually took me to lortab 7.5. When this wasn’t controlling the pain, he added tramadol and celebrex. My insurance wouldn’t pay for the celebrex so I was only on it for the 15 days that the ortho gave me samples for. He also had me start physical therapy as I was loosing the range of motion in my ankle. This made things worse, so he discontinued it after three sessions. I saw my ortho for my last appointment on the 17th of December. He wanted me out of work until the end of January, but I had to return on the 16th at the end of my FMLA. So his office made me an appointment with a pain managament Dr for the 21st of January, with a possible diagnosis of RSD

I began to read up on RSD as I had seen others discuss it on a work comp forum that I am a member of. No, this isn’t a work comp case, it is all through my private insurance. As the days passed while I waited, I went into a deep depression and almost took my own life over the holidays. The pain that I was experiencing was like nothing I had before. I have a high tolerance for pain, going as far as having a tooth removed with just a local and then going back to work within an hour. And I never knew that there was a pain as excruciating as this. I prayed that the new Dr would tell me it was caused by something else.

My appointment on the 21st turned out to be my worst nightmare. Just looking at my foot and ankle, the Dr knew that I had RSD even before he touched it. He also diagnosed me with lumbar disk disease and radiculopathy of the lumbo/sacral area. He upped my Lyrica by 75 mgs a day (I had been taking 150 mgs) and gave me a scrip for fentynal 25mcg patches to be changed every three days.

On the 2nd day of wearing the patch, I had a severe allergic reaction to it. I called the Dr’s office and was told to discontinue the fentynal and that they would call me in a scrip for Mobic, an anti-inflammatory for arthritis. I still can’t figure out why he took me from a high dose opiod narcotic to an anti- inflammatory which has done nothing for me. In fact, as I told his nurse when I called her today, it has caused more swelling in my foot, along with nausea, severe stomach cramps, diahhrea and problems with my vision.

They had me come in and get a scrip for Kadian this afternoon and told me to keep my foot elevated as much as possible. I took the scrip to the pharmacy to have it filled after I left the Dr’s office, only to be told that my insurance won’t cover it, because there is no generic for it.

So I sit here in pain tonight at 1 in the morning, waiting for my insurance company to approve the Kadian. The pharmacy said it will take 72 to 96 hours for that to happen.. if it does, as they have to fax a paper to my Dr, who has to fill it out and fax it to my insurance company to see if they will approve it. I doubt that they will, as they denied me the Celebrex, stating something about gastro-intestinal problems, as well as the increased risk of heart attack or stroke. Instead they said I could take over the counter motrin and get the same effects. What they don’t know is that my body has become so used to motrin, that it taked almost 2500 mgs every 2 hrs for it to help minimally at best. As I am generally up 14 hrs a day, that would mean almost 25,000 mgs a day. Now I wonder what would do more harm.. 25,000 mgs a day of motrin or 25mgs of Celebrex a day.

I am scheduled for a stellate ganglion block on the 12th of February. However, I know that I can’t make it that long without some kind of relief for the pain. I get about 3 to 5 hours (not all at once as I awake frequently during the night) of sleep a night. I am having problems doing my job now, as the pain makes it hard to concentrate. And althoug it is sedentary work at a computer all day, sitting at the desk puts pressure on the back of my leg, making the RSD pain even worse as well as making my lower back hurt. I feel as if I am damned if I do and damned if I don’t. I am getting close to the short end of my rope and seriously considering ending it all. It isn’t worth all the pain and stress that I am under.

Although my boyfriend tries to be understanding of all of this.. he doesn’t have a clue about what I am going through and can’t even support me in my effort to find a way to get back to my old life. I asked him to take the day off on the 12th and take me, as I need a driver to get me home. He started throwing a fit, so I just called a girlfriend who was with me when I had my surgery for the tarsal tunnel . as once again he couldn’t take off work (although that time I understood, as he is a teacher and they were doing TAKS tests .. special tests here in TX). She was more than happy to rearrange her working schedule so that she could be there to drive me home and make sure that I am okay. Since all of this started, he has been to the Dr with me once.

I just don’t know what to do anymore. All I know is that I want my life back, and the harder I try to accomplish this, the farther away I get.