In May of 2012, I had surgery on my left knee to remove plica around the knee cap. I went through physical therapy for several months. I dealt with constant pain, even after stopping therapy. I was on pain medications, steroid injections for months after my surgery. Nothing seemed to help. I saw the PA at my ortho's office almost on a monthly basis trying to figure out what was going on. She was convinced that I had RSD, but my orthopaedic surgeon wasnt convinced, due to the only symptom that I had was constant pain,no physical symptoms. I had a bone scan on my knee and leg, and it showed numerous amounts of uptake and my leg was lit up on it. The Dr said he had no doubt that I was telling the truth about the pain I was in, but he still didnt believe it was RSD. He then decided to send me for an MRI on it. The MRI showed alot of scar tissue build up in the knee and he said it was pulling my knee cap out of place. The only fix was a simple surgery to remove all of the scar tissue and I wouldnt be in pain anymore. So we scheduled surgery for January 24th, 2013.
On January 24th, I went in for surgery. Surgery took a little longer than expected due to there was more scar tissue than he thought originally. When I woke up from anesthesia, I was screaming because I was in the most excruciating pain that I have ever experienced. Simple little surgery right? Didnt feel so simple at that moment. They were giving me dilaudid and that wasnt helping, so the recovery nurse called anesthesia and they came down and gave me a nerve block. After the nerve block, I was feeling no pain. Couldnt get the nausea under control though. Several hours later, they finally let me go home. Thank goodness :) While having the nerve block I wasnt any pain, but on Friday it started wearing off and the first place I got feeling was in my toes and foot. Finally it wore off completely and I was back to being in alot of pain. I was taking two pain pills every 4 hours and it wasnt even touching it.
On Sunday morning I woke up and my toes and foot were numb and felt tickly and pringly. The only way for me to describe it, is it feels like a 1000 little needles sticking my in the foot. Deep down I knew that something wasnt right with my foot. Monday morning I went to my post op appointment with the PA and I told her what I was feeling in my foot and she said it could be that Im feeling some effects of the nerver block. When she removed all of my bandages, I noticed that I had the same feeling in my calf as well. I took her word for it and left. I continued to have the same feeling throughout the week. On Thursday, I had my first physical therapy appointment. I have only been able to tolerate wearing a fuzzy sock on that foot, but had to deal with it and wear a shoe and sock for therapy. It was painful and uncomfortable, but I made it. :) I explained to the therapist what I was experiencing and she agreed it wasnt normal and suggested I call the dr. Later that evening, I was propped up and my husband placed his hand on my calf and it felt as if I had been sitting in a tub of ice. The calf and foot were ice cold, and purple with little white splotches all over it. My husband freaked out and told me that I definately need to call the dr first thing in the morning.
It is now Friday morning and I have put a call into the doctors office. The nurse and PA are in agreement that it isnt normal and I need to come in immediately. So, for me this will be the first time to drive since surgery, so I wasnt able to take any pain meds :(
I get to the office and the nurse checks my foot and calf and is in agreement that it feels like ice. So the PA comes into the room and I explain to her what I have been experiencing. The first thing she checks are my circulation and pulse in the foot, those are great she says. She starts looking at my leg and foot and thats when she looks at me and says " You know I have thought all along you have had RSD, and now I am 100% sure it has now set in" My heart just sank. I could not believe what she was saying. I think I was in shock, I didnt believe it was real. She told me to hold on for a minute and she left the room. When she returned, she said that the Dr wanted to start me back on the Lyrica since that is one of the main medications for it. I agreed, but not thrilled at the idea. I was on it back in November and it made me feel like a zombie, I was sluggish and felt like I was moving in slow motion. I was forgetful and tired all the time. So I am currently taking the Lyrica 50mg and tomorrow I increase that dose to 100mg and they increased my pain medication to higher dose, which I am still taking 2 every 4 hours. They are working on finding me a pain management doctor that specializes in treating RSD.
So this is where I am at currently, just learning how to cope and deal with it. If I have my leg propped up on my wedge pillow, the color stays somewhat normal unless it starts getting really cold. I tried to shave my calf last night and managed it but just barely. I could hardly stand the sensation of it touching my leg. I am currently on crutches from my surgery, but there is concern on if I will be able to walk again. I cant put any sort of pressure on my foot at all. Last night for the first time ever, I felt the burning in my foot. It was under two of my toes and it was horrible.
Tonight I took a bath like I do every night and when I placed my foot in the water, it felt like it was on fire! It was the worst feeling I have had so far. This whole ordeal is scary, but talking about it definately helps. I will be documenting my journey from day to day. I will be posting pictures as well. If anyone has questions, please feel free to ask. I will be more than happy to answer what I can.
In the top picture, this was taken to show the color change that has already taken place. This picture was taken after I went from the couch to the kitchen and had only been up about 5 mins or so. In the bottom picture, I had just finished taking a bath last night and it was all spotchy. Just a little idea of how RSD affects a person. I will post more pics throughout this blog.
((Hugs)) Kim
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Hi Kim! I got your blog URL on the FB HeretoHelp. I am so glad you started this blog. I wrote one in 2005 about my kids' RSD, but I still haven't finished mine about my own RSD. I should have recorded my own at the beginning, but I was in denial even though 2 of my kids had been dxed with it. My oldest daughter went into remission after 3 years of the nightmare. I have had it for 17 years. I strongly urge you to keep moving that leg and foot as much as you can and put a little pressure on it even if you cannot put much. I have communicated with hundreds of folks with this over the years. The ones that do the best keep using their limbs! I have it in my right leg and right arm. I get the same discolorations you are experiencing, but I am mobile! I will share my blog site with you, but it isn't finished. Good for you! Keep adding to this! I am interested and care about you!
ReplyDeleteThank you so much Nita :) I will definately be keeping this up to date. :) I am definately having a hard time dealing with this and for me talking about it is the best way to cope with it. I really hope that my blog can help someone.
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