Joint Replacement Patient Forum
My OS has suggested that I may have Complex Regional Pain Syndrome. This is partly because I have had more pain than I should have at various stage in my recovery.
Of course I’ve had to research this myself! Here are a few websites that may be useful or of interest to others even if they don’t have this syndrome. I think it’s something that should have ‘raised awareness’ but please don’t let it worry you - it is quite rare.
Potential CRPS cure U.K.
American RSD hope
CRPS resources from CRPS UK
Celle and susieshoes - as always thanks for your wise words - I am much comforted
Not sure whether my son would welcome being called sweet (even though he can be)
More news: my surgeons pa phoned and asked if I could go and see him this afternoon. We have just arrived back. He found no infection, thank goodness, but said I had something called Complex Regional Pain Syndrome and has prescribed Gabapentin. I’m seeing him again in 2 weeks. So we’ll see what happens.
I had a LTKR June 10, 2015 at Swedish Orthopedic Institute in Seattle. I fell on a city sidewalk March 1, 2010 and after various treatments, a TKR was the only thing left to do to resolve constant pain.
I had symptoms of intense pain and was no longer able to put my heel down about 28 hrs post TKR. The nurses said to take more pain medication. No one looked at my leg or questioned the change in my condition. I was medicated so heavily that I was picking spiders off of my sheets (nurse laughed) and talking with my deceased mother.
Dr still wanted to release me the next day even though I told him I was in too much pain. It was the PT assistant who came in for a last session before discharge who thought I may have a clot. Sure enough, "acute near occlusive left popliteal vein DVT".
I was started on medication and stayed another night. My leg was so bruised and swollen that I had gained 10 pounds while in the hospital. After 3 months of Coumadin, thigh high compression stocking, and countless appointments to PT, etc, I am left with complex regional pain syndrome.
I went to the local university medical system for another opinion because my surgeon said "we're not even sure you ever had a clot." The university Dr said I had excessive bleeding the OR and the swelling compressed my vein. He also said he wouldn't have done a TKR for my knee which was damaged from a sidewalk fall. University Dr referred me to their pain clinic. The pain clinic ordered a triple phase bone scan and found increased metabolic activity in my operated leg, this is 2½ years after the surgery.
Several treatments were offered, Duloxetine, PT, TENS, a nerve block, nerve ablation, and high IV doses of a bisphosphonates. I have continued pain, nerve sensations, some swelling. I try to manage with ice, heat, exercise, and sometimes sleeping medication.
Has anyone else had experience with this? I want to talk with the hospital risk management regarding their poor postoperative care and would like some guidance before I talk with them.
I had surgery on my left knee in April of 2017. The surgeon removed a piece of my patella that had broken off. Despite having a nerve block the #CRPS spread. Thankfully, through nerve blocks, massage and PT I have managed to regain most of my mobility in that knee. ROM 15 degrees loss of extension - 130 degrees of Flexion.
My right knee is still more limited. ROM 20 degrees loss of extension and 95 degrees of Flexion.
I have OA in my left knee and am hoping I won’t need a replacement any time soon.
All the best in your recoveries!!
I've been waging a seemingly hopeless war against PT or physio that goes to extremes in bending, pushing and generally making patients do excessive amounts of very demanding exercises. I have now amassed several cases which graphically demonstrate the folly of this approach and the self-fulfilling prophecies of the warnings meted out by the PTs. Things like the "window of opportunity" in TKR and no pain, no gain. These are all myths and very dangerous ones at that.
I want you to listen to this warning as it could mean the difference between you getting a good outcome from your knee and ending up, as PT's so often warn, with a knee 'set like concrete to never move again".
Male, 59 years of age. Accustomed to using gym daily, ran marathons and engaged in many other similar activities. Had bilateral TKR in 2009. He was home on day 5 where tells me he was prescribed oromorph, codeine and paracetamol. He said he took the codeine and paracetamol but rarely took the oromorph as he felt he shouldn't really need it as he could work himself out of pain!
Within 4 days of being home he was back in the gym doing his usual workout plus exercises given him by the PTs. He was also doing his own shopping, housework and gardening.
His exercise schedule went like this with sessions 3 times a day
- 15+ heel slides
- 20+ straight leg raises
- 10+ times up and 10 times down stairs
- 20+ free standing squats
- 20+ wall slide squats
- weighted knee off end of bed (extension) for 10 mins
- 30-40 forced extensions with a Theraband strap
This added up to a staggering 425+ exercising motions every day!
Plus other gym work, walking 1½ hours twice daily.
He also returned to work at 6 weeks as a shelf stacker in a major supermarket (N.B. this is NOT light work and often requires carrying packs up steps to stock top shelves or kneeling to stock bottom ones)
When asked if his knees ever hurt while exercising and he replied "Oh gosh yes - it was agony"!!!
He iced with frozen peas 20mins twice a day and elevated by laying flat on the settee!
Shortly after the TKR, his surgeon decided to fit a patellar button in his left knee but it made no difference to the unrelenting pain.
At 5 years on, he presented in my clinic with a ROM of 90 on one knee and 100 on the other
His legs were grossly swollen and the knees excessively painful, especially the left one and he was seriously considering amputation. However, he was referred to an neurosurgeon who implanted a spinal stimulator. This didn't work well and he had to have it redone a few months later.
12/07/16 Edit to update
I saw him again one year later. He reported that the spinal stimulator never really worked well and things had not improved. He had been diagnosed with #CRPS and was on excessive amounts of pain meds but nothing really worked. He had also been told he had femoral nerve neuritis.
He was more convinced than ever that he should have this leg amputated but I pointed out to him that if he had a mid-thigh amputation, he would still have a length of femoral nerve left and would then be subjecting that to the use of a prosthesis so his pain would still be present.
I did quite a bit of research on CRPS (complex regional pain syndrome) at one time.
What happens is that normally when nerves are stimulated by a pain somewhere, they fire like an electric spark that shoots up the nerve cell (called a neurone) and travels from one cell to another. As each cell fires, it's supposed to go into a short period of rest before it can fire again. But when the leg is affected by CRPS, the nerve cells are just randomly and constantly firing which is why pain meds and all the other usual remedies just won't work.
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There are some do's and don'ts with this - first be very careful of movement or any other stimulation like massage. A CPM is not a good idea as it will keep the nerves firing. Neither is ice or heat. Even hot water from a shower can do it. Rest is your best friend right now. You have to try and figure out for yourself what triggers an attack and then avoid it.
Good news is that CRPS can go into remission if it's allowed to (no CPM!) but bad news is that almost anything can start it off again. You could go into a remission and do certain things a dozen times and then suddenly one day it will set it off again. Some people (lucky ones) just have the one episode and that's it. It can be caused by anything from a broken ankle to several extensive surgeries, from a bad fall to aggressive massage/PT. In truth, as yet this is a poorly understood phenomenon and the best that is known as that there is still a lot to be learned. Every case is individual and has it's own course and manifestations so there is no 'textbook' case to tell you about. I truly wish there was.
@Madbkseller ... I have moved your post to it's own recovery thread. You posted on an old thread from 2010 and no one would have read your comments. Also, could you please modify your signature to show that you have had a LTKR in 2013 and a Revision LTKR in 2015? This makes it more clear for us and we know which knee you're talking about.
The member where you posted was significantly farther out with her recovery than you are and she had developed #CRPS (Chronic Regional Pain Syndrome). At only 8 weeks out from surgery, it is normal to have odd aches and pains like this and it just can be part of the recovery process. I'll tag @Josephine so that she can comment as well.