Good morning all.
I'm so happy to have found this site. To cut a long story short, I had a loose fragment taken out from my kneecap by arthroscopy on July 26th. I was super fit and did many sports 7 days a week previous. Also it showed up on my first MRI that I have grade 4 patellofemoral osteoarthritis which tbh had not really caused me any concern before the operation.
Since then, 12 wks has passed and I have got progressively worse. I read about this disease quite early on and my consultant and one physio almost laughed when I mentioned it. I am still on crutches and can't walk that far. I can only bend my knee to 80 degrees and I have become severely restricted in doing anything. I do have full extension though. I am very depressed.
Fortunately I did find another consultant in London who deals with arthrofibrosis ( the only one in the uk) who I have seen and last week I had an injection of anakinra in the knee. He says he has had good success with this but also not success so I am presently waiting.
Along the journey I've very mixed opinions with the physio.I was told immediately to be off crutches, then on. Now I'm doing lots of straight leg lifts and quad sets as my right thigh has lost a lot of muscle. Sometimes I'm not sure whether these help.
I'm also on naproxen and paracetemol. I've been on naproxen for ages and hate the idea of constantly taking these pills. I've also seen a pain specialist who has suggested duloxitine but not until we see how the anakinra injection has worked.
This all plays with my mind and I'm not sure when but if it doesn't work, my next option the consultant suggested would be another arthroscopy above the patella to try and remove the scar tissue. He does not use a tourniquet and I think would prefer to use most other options before surgery.
I'd be most grateful for any suggestions to do with painkillers and anything at all you could help me with , with all your knowledge as it gets very confusing and deeply plays with my mind as only 3 months ago I was a very different person.
Thank you
Nicola
Thank you very much for all your advice and such a swift response.
I do get achey legs after standing for a long time or walking. I wouldn't say extremely painful but almost like a low grade burning. But then sometimes I think , well of course my leg feels weird and funny as it hasn't been used for 3mths and before that I was running and walking many miles a day.
There was a time when I wasn't taking any painkillers and then I got put back on them and tbh, I'm not sure the Naproxen makes that much difference anyway. It's annoying as both the Doctor and the pain specialist recommended I still take them. It's very upsetting as you automatically trust these professionals and just do as your told but when things sten't working then it's time for a change. Before any of this happened I'd barely touched a pill in my life.
I live in Oxford, England and there has never been a mention of a cpm. I wouldn't even know where to start to get hold of one or for someone to teach me how to use it. Do you know where I cound get hold of one?
Hello Nicola,
Thank you for reaching out to us, arthrofibrosis takes an enormous toll. I can pass on our understandings of what might help, and what might be counterproductive, but please understand that I’m not a clinician, and I can’t provide medical advice.
Firstly, the science indicates that inflammation causes depression, so effectively treating inflammation often helps with depression. The science also indicates that long-term treatment with NSAIDs, such as naproxen, actually increases inflammation, in contrast to short-term treatment (under one week). The exception to this is aspirin, which is why it’s used long-term to treat heart fibrosis and other forms of fibrosis, while other NSAIDs are known to increase the risk of fibrosis.
Secondly, if you have an impinged Hoffa’s fat pad (IFP) then even minor exercises like straight leg lifts and quad sets can pinch it between the bones and make the situation worse, and the same applies if your patellar tendon is inflamed. So, if your knee is more painful afterward doing these activities, or the knee becomes stiffer, then it’s probably a good idea not to do those. Signs of an impinged IFP include pain after standing and walking, or doing steps etc, and if this sounds like your knee, then the crutches should help to prevent further aggravation.  PTs experienced in treating arthrofibrosis recommend the use of crutches for up to 6 weeks post op, or longer if required. You have probably read the information about the IFP on the IAA by now.
You may have read the blog about muscle atrophy, which is caused by inflammation. The science suggests that exercising an inflammation leg could actually increase the inflammation and fibrosis, while not succeeding in building muscle, as the inflammatory factors prevent this from occurring. The focus at this stage should be on restoring the joint, and joint health, and not on muscle building, that can come later.
It’s great that you’ve been given an anakinra injection, I hope you see a real benefit. Of the surgeons that do provide this treatment, many give repeated injections to ensure that the treatment helps for long enough to stop the fibrotic processes. I think that your desire to delay further surgery is sound, the resolution of arthrofibrosis takes a lot of time, and surgery will create more inflammation.
You might have already read about CPM here, it might help you to increase ROM if you use it carefully for long periods every day. You could ask your pain specialist about Pregabalin, which can help nerves to heal. Obviously there are opioid painkillers that are usually effective in the short term.
If you would like to complete the Surgical Checklist at https://www.arthrofibrosis.info/surgical-checklist that would help the IAA.
Please feel free to ask questions, and all the best,
Kayley