Living with RSD

Hi, I am Toni, a 28 year old female. I have been going back and forth to several doctors about my condition and no one has any answers for me. I wanted to share with the users of this site my symptoms because after researching RSD I really feel this is what I am suffering with. I am looking for some feedback from others as to what I should do, I have a follow up appointment with a doctor next week and I am wondering if I should ask to be tested for this.

In October 2008, I began walking alot and watching my diet since I am a little over weight. Everything was fine, I did not injure myself that I can remember but one morning in November I woke to find a small lump just under my ankle. It was a little tender to touch and had a red appearance. I didn’t think much of, just thought it was something weird that would go away in a week or so. I waited until mid December and this lump was getting worse, more tender and getting larger. I decided to see my family doctor before the holidays. He had no idea what the lump was and put me on an antibiotic for 10 days.

By this time my foot began swelling alot creating more pain. After finishing the antibiotics I returned to my family doctor since there was no improvement. He then referred me to a dermatologist I seen the derm. by the end of January 2009, he did a small biopsy of the lump at that visit since he was not sure of what it was either. I expressed to him the pain I felt with touch and with my shoe pressing against it.

From here I waited for the results of the biopsy. This took about 5 weeks. During the 5 weeks, I noticed extreme pain at night, my skin had turned from red to bluish purple in the area and more lumps were appearing under the skin. I had been taking ibuprophen for pain and swelling recommended by the derm. I had a friend of mine who is a nurse take a look at my ankle and she said it seemed to be infected even though the site of the biopsy looked fine. My ankle was warm to the touch as well. So I went to the emergency room and seen a doctor there who had no idea what was going on with my ankle and he prescribed more antibiotics for infection along with ibuprophen. This didn’t help.

I was experiencing difficulty walking now and it seemed the more movement I had the more pain increased. The pain was just a dull ache when I layed on the couch with my foot elevated and the coloring would return almost back to normal.

After 5 weeks, the results of the biopsy came back inconclusive. I cried to break my heart when the derm referred me to see a surgeon to get a larger biopsy done. I was frustrated by this time with the pain and that no one could do anything for me. I am feeling depressed these past few weeks since I can no longer drive, its too painful and the only comfort I get is to be laying with my foot elevated.

I felt the doctors were not doing what they should be since no one had asked for complete blood work or even an x-ray, so I went to emergency again and requested this to be done.

So this past Tuesday March 24th, 2009, I had the larger biopsy completed by a surgeon. I also got results back from the x-ray and the blood work that everything was negative. I left the hospital crying once again because I was so discouraged because I was getting no answers. The surgeon was so inconsiderate about my pain I was feeling. I asked to have from my knee down froze locally rather the drive the needle into my ankle since it was just soooo sensitive. But he didn’t believe me that I was that bad and did it the way he wanted to. I felt like I had been traumatized! I shook like a leaf.

Now this past week, I have been taking demerol for the pain, this do not help! I doubled my dosage on my own since I am so desperate for some relief. I feel useless to my kids and husband, my family has been coming by to help with house work and meals. I must say I do have a fair amount of support but I feel like I am no good to anyone. Last night I had to crawl to the washroom since the burning and stabbing was so severe, I cry and moan and I know it must annoy my husband. The pain seems to be radiating further up my leg into my back. I am not sure if my condition is getting worst or if it’s from laying down so much.

I am really desperate for answers, I don’t think I can wait another 5-6 weeks for this other biopsy to come back. I have also been taking extra strength tylenol, tramaset and tylenol 3’s……nothing helps! If anything they give me headaches and make me want to sleep.

So I am asking for some feedback from all of you who understand what I am experiencing and who know what RSD is to give me some feedback as to what I should do next! I am desperate. Thanks