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DiscussionComplex regional pain syndrome or reflex sympathetic dystrophy
Chronic Pain | Last Active: Oct 3, 2023 | Replies (185)Comment receiving replies
Hello Everyone,
I found this forum doing a Google searching for my knee pain. My sister-n-laws mother has RSD and advised me to check in to it. In April of this year (2018) I underwent a Lateral release, chondroplasty and had a piece of cartilage removed from my left knee after a fall on concrete at work and a tear to my patellar tendon. 4 days after the surgery I ended up in the hospital literally screaming in pain.( My Dr. thought it best to cover my drain hole from the surgery earlier that day when I went to see him about the small blood clots coming out and since my leg was leaking so much blood.) He had to do an emergency drain of my knee later that evening, due to the amount of build up. (My knee swelled up larger than a cantalope, so fast and bad that my skin was splitting open). The pain was so unbearable. I cried for 10 hours straight. I stayed 4 days in the hospital after he drained my leg that night. When they were moving me from the gurney of the ambulance bed, ( yes, I went to one hospital and they had to transfer me to another), I had no support for my left knee and leg, so it was just flopping around. I felt something snap inside my knee. I tried to tell the doctor and staff that something snapped but they wouldn't listen to me. The Dr. also did not wait for the numbing medicine to kick in before draining my knee. He just gave me the numbing shot, waited about 3 secs and plunged in the plunger. They had 5 nurses holding me down. My brother and husband had to leave the room because they couldn't bare me screaming the way I was. It was a horrible experience.
I was released 4 days later. I ended up doing over 12 weeks of physical therapy. My leg just wasn't healing well. The Dr. said the only thing he could do was to do exploratory surgery on my knee since nothing was showing up on my scans or xrays. I said absolutely not! I have lost range of motion in my knee. I can no longer, kneel, bend, squat, carry anything over 5-10 lbs, stand for more than 30 mins at a time, have to get up every hour to move my knee if sitting and I walk with a cane.
I went to a 2nd doctor, for a 2nd opinion after the first wanted to re-operate. My knee has been in more pain since before the operation. I get shooting pains in the right side of the knee, ( not the side operated on) and my patellar tendon that was ripped constantly hurts. I have this deep throbbing pain all the time, with a burning sensation. When I take a shower, the water feels like it is burning my knee. The left side of my knee all of a sudden developed this dark line out of nowhere. The burning sensation radiates down in to my calf muscle and shin bone. It also radiates to the tibula where the tendon operated on connects. The pain radiates up in to my thigh muscle, and a lot of the times when I am walking I get such an intense pain in my knee, that if I don't stop walking and grab something my knee will give out on me. The 2nd doctor said he wouldn't advise another surgery now, but that within the next 10 yrs I would more than likely have to have a full knee replacement. The 2nd doctor has told me that the reason I have pain, is that I had a small amount of arthritis before the surgery, and that after the surgery my arthritis is what is causing me pain. I don't believe him. It makes absolutely no sense!!!! I worked in a factory, bending, squatting, standing for 10 hours and I had no issues!!!!
I was given a cortisone shot to my knee and that did not work.
I am also diabetic and have diabetic neuropathy. They are trying to say it is arthritis with a combination of the neuropathy. I don't believe that. I have never had pain in my knees before. Only my feet. I just don't know what to do. I can no longer work at my job, am now on unemployment. The 2nd doctor gave me a disability rating of 3% to the knee, 1% whole body impairment, so I can't even file for disability. How can I have only a 1% disability when I can no longer do anything that I could before? I am already Bipolar/Depressed and now my depression is getting so bad. My shrink thinks I may have PTSD from the experience I had to undergo when they drained my knee. I am seriously going crazy that no one believes I am in this much pain all the time. I have asked for something stronger than NSAIDS, but they won't give me anything. I don't want Opioids. I just want to go a day without having to massage my knee all the time.
I am sorry for the long post/rant. I would just like to know what to do? My sister-n-laws mother say she believes I have RSD, because I have most of her symptoms. How do I ask my doctor without making it look like a suggestion that I may have RSD? I am going stir crazy. I have never been one for not doing something! I can't even bend down in my gardens anymore. I am 40 yrs old. Please advise! Thank you all,
Replies to "Hello Everyone, I found this forum doing a Google searching for my knee pain. My sister-n-laws..."
@jp37019 I am so sorry for what you are going through, I can almost feel your pain because I was in terrible pain before my first TKR (total knee replacement). When I finally saw a doctor to have it done and the surgery was a couple of months off, I got off the phone and got tears in my eyes because I didn’t think I could possibly wait that long. I had a terrible limp too. At this point I have had both knees replaced. The pain, from what I understand, is generally on the inside side of the knee, where it sounds like yours is.
If your knee is that bad, why won’t they do a TKR now?
I have heard/read that the current feeling is that if a TKR is definitely in your future it is best to do it without waiting. The reason probably does not apply to you though. It’s because if they replace it before it degenerates to being really bad the recuperation is less difficult. If you are in that much pain I don’t understand why they want to wait. Maybe you need a third opinion from a doctor at a different hospital - doctors at the same hospital often do not want to disagree with other doctors at the same hospital. My husband had an ankle problem and he saw FIVE doctors before he got a good diagnosis and that doctor performed surgery and fixed the problem.
Also, with the opioid crisis doctors are very reluctant to prescribe them, and that really is the only option other than NSAIDS. The feeling now is that ibuprofen is pretty close to the opioids in ability to help with pain.
I hope you are able to find the source of your extreme pain and get some relief. Please keep us informed.
JK