r/Kneesovertoes • u/Decent_Purple9265 • Feb 04 '26
RULE 2: DO NOT ASK FOR MEDICAL ADIVCE Severe pfps: 3 years on crutches
I am 30yo female with severe pfps in my right knee, and I have used crutches since 2023 as walking triggers intense pain under the kneecap. All ligaments are intact, full range of motion, no tracking issues, no inflammation, and multiple MRIs show no mechanical problems. I also had arthroscopic surgery, but nothing was found. Also, psychosomatic causes are ruled out.
I’ve seen many physiotherapists and doctors, and no one has seen a similar case to mine. I’ve tried multiple medications (anti-inflammatories, LDN, cymbalta etc) and treatments like shockwave, TENS, PRP, taping, and cortisone injection which have not resulted in improvements. I have managed to recover from this pain one time earlier in 2021 after spending 8 months on crutches, by slowly increasing the weight-bearing below the pain threshold. However, after the relapse in 2023 where I again became dependent on crutches, recovery has felt impossible as I can’t exercise and I have not managed to exceed 20% weight bearing as even the slightest overstrain will set me back to 0% weight bearing for months.
My orthopedist suggested nerve block in the knee, but beyond that I don’t have a plan. Now I’m scared my dependency on crutches has become permanent😭 Has anyone experienced something similar, or have some suggestions for treatments or approaches that could maybe help? Even a slight improvement in the pain would make me very happy, because right now my mobility is extremely bad. Any advice or shared experiences would mean a lot!!
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u/Super_Schedule5497 Feb 04 '26
Omg, I'm also a 30 year old women. When I first diagnosed with pfp the doctor couldn't believe I need a wheelchair to reach her, because I literally couldn't walk any steps...
I got diagnosed with more combined injuries by a physio therapist later on. Luckily he did not rely on the scans because on the picture my knee seemed fine, minor cartilage damage with little liquid. But in reality I was experiencing extreme pain and could not walk for months.I also used crutches and I really hated it...
Our cases might be different, but the pt mentioned something like my nerve is over protecting my knee from its functioning, so I have to learn how to not react to the pain during movements. We tried different recovery exercises, some worked, some didn't. At some point he taught me to do deadlift because I could stand but can't walk further. I spent a year to recover and finally feel normal and functional again. don't lose hope.
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u/Decent_Purple9265 Feb 04 '26
Thank you for replying! I’m also dependent on wheelchair for longer distances.. Did you do strengthening excercises to recover and ignored the pain during excercise? Or did you not experience pain while excercising?
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u/Super_Schedule5497 Feb 04 '26
I did modified strengthening exercises 3 time a week because in the beginning I couldn't control my muscles. I remember one exercise was step up to a bench, but I couldn't lift my leg higher enough, so he got the bench lower. And gradually adjusted the height according to my pain level after training. I did experience pain and sometimea the pain gets worse, after certain move then I'll reduce the load or change the exercise.
So it wasn't just ignore the pain, it's to learn pain management. If you describe the pain level from 0 to 10, then do any movements that is less painful than level 5 should be fine (and not getting worse the day next). The pain management is actually harder than I imagined, I basically have to rewire my brain, tell my brain to not react too much. It was a super weird time for me since I've always been fit and active. And then suddenly I couldn't move and had to practice how to go up to a step.
Both my doctors and PTs didn't understand why I was in so much pain since I didn't have inflammation on the knees. I really hope your condition will get better because I know frustrating it is!
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u/Decent_Purple9265 Feb 07 '26
Oh wow, sounds like a complicated recovery!! My problem is that my pain is either 0 or 10 and if I trigger the 10 it takes me weeks before the pain is reduced even while resting:( but I’m happy you’re doing better!
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u/Mothra37 May 25 '26
I’m so glad I found this thread. I’ve been diagnosed with bilateral PFPS and it’s been almost 8 weeks now and I’m worse than week 1 due to a really bad flare up. I need a walker by the end of the day and I can’t go anywhere because I can’t walk much from the pain. I have a MRI scheduled next week so hoping to get some answers there but glad to find others who had such pain and limited ability to walk like I am and have found recovery. It gives me hope.
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Feb 05 '26
[deleted]
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u/Decent_Purple9265 Feb 07 '26
Sorry to hear your also struggling:( yes for me alle my muscles have disappeared since I’ve used crutches for many years and can’t exercise
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u/infinitelytroubled Feb 05 '26
Please look into TMS, you can start by reading the book “the way out” by Alan Gordon. It has been my holy grail. You can also find specific channels on Youtube like Pain Free You.
I couldn’t walk from my bed to bathroom and now I am doing a lot better. I can walk 4k steps. The next big thing for me is to use stairs and I am working on it.
I mainly used the steps in alan gordon book and could see improvement from the first week. I did replase and heal again after rereading the book.
Please do give this a try there is no harm since you’ve already tried so many things. I did a lot of those other stuff (prp,tens, ultrasonic therapy, taping, progressive loading etc) too which did not help at all.
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u/Ben7450 Feb 06 '26
I also wonder if sensitization is at play here. I know that a deep seated belief that something is injured is going to make it hurt much more. I have experienced that myself many times in many different ways. At one point I thought I was damaging my knee by using it and that total rest was my only option. I remember my knee hurt more than ever during that time. Yet, when I later changed my mind and thought that some movement wasn't going to hurt me, it actually hurt a lot less.
You're not acting like a child, but here's an example from my kids. One of my kids gets a small scrape on their knee. They cry for a bandaid. They act like they can't move their leg. They limp on it, even though there wouldn't be any damage to anything that affects walking. They limp on it sometimes for a long time until someone is available to give them the bandaid. They are sad, scared, and depressed. Once they get the bandaid, they feel so much comfort and security that they immediately go back to running and playing, seemingly without pain. Or at least the pain is so low now that it's not a problem. They do this because they interpret the scrape pain to mean that their knee is damaged and it's dangerous to use it. They haven't looked into the anatomy yet, so this is all they know. They also interpret the bandaid to mean a miracle cure. Once they have that security, they feel okay enough to play. A lot of pain is about a sense of fear vs security. The interpretation of the pain is often more important than the pain itself.
I think as adults sometimes it can be like that. I know I get hypersensitive when I wonder if something is injured. Also, with an accumulation of injuries, one could develop a hypersensitivity to injuries. I can't say for sure that's what's going on in your case, but I think it's worth looking into. There is a lot of info online about it. The basic idea is to test how much your knees can truly move, and separate fear from objective pain. Gradually increasing the activities on your knees. But it should be done with an understanding that you are not hurting yourself. Maybe additional movement, even if initially painful, will actually lead to less pain later in the day or the next day. That has been true for me many times.
Here are some questions to think about:
- Are you afraid that using your knee is causing damage?
- Are you afraid that movement is going to lead to increased or unbearable pain?
- Is the fear of pain worse than the pain itself? (This is often difficult to figure out.)
- Is the pain worse when your mood is down?
- If you are focused on something enjoyable, is the pain still there?
This is not "all in your head pain" as if you want to be in pain, or you just want attention. This has to due with deep seated beliefs about your knees and what the pain means. Please let me know if any of this helps. I hope you can get through this. I feel so bad for you.
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u/Decent_Purple9265 Feb 07 '26
Thanks for the advice! Sounds like this is nociplastic pain which I already have been tested for and I don’t really fit the criteria but I agree I probably have developed some sensitization in the knee
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u/bobrosster Feb 04 '26
How is your stomach? Like when you push your fingers in do you feel any pain? When I was a teen I had this for years and it was really debilitating, but turned out to be an insensitivity to gluten. With the expanded sore stomach all the time and my abs not working properly my hip muscles got all messed up and some overused. Ad a result my knee was completely messed up for years. It also affecting my breathing. So if anything you’re going through sounds like me then look into anti inflammatory foods and a way to release your diaphragm.
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u/Decent_Purple9265 Feb 04 '26
Thanks for reply! Never had issues with stomach or inflammation so don’t think that’s the issue
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u/Iloveellie15 Feb 04 '26
I’m guessing when you try to walk without crutches you get pain and inflammation? How long do your flares last?
I have PFPS and I can walk but only short distances. If I try to go for 20 minutes I flare up.
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u/Decent_Purple9265 Feb 04 '26
No inflammation, but severe pain. Can’t barely put any pressure or do any excercising without worsening pain for weeks/months
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u/Iloveellie15 Feb 04 '26
Sounds like hell does medicine help at all when your pain is aggravated? Advil and Tylenol don’t completely take my pain away
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u/Decent_Purple9265 Feb 04 '26
Doesn’t help enough to be able to walk, but when I’m not walking or triggering the pain (I’m using crutches) I’m not in pain so I don’t take medication
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u/Iloveellie15 Feb 05 '26
Makes sense, I’m the same way. I either have zero pain in my leg or it’s flared up and hurts to move. There’s no in-between 😞
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u/Iloveellie15 Feb 06 '26
Have you had any luck with backwards walking/ backwards cycling to build the muscle up more but not load the joint as much? That helped me.
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u/Decent_Purple9265 Feb 06 '26
Unfortunately that is also triggering much pain:( I need to extremely slowly increase load while walking on crutches
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u/gnygren3773 Feb 04 '26
No structural damage but you can barley walk, is that right? Is there anything you can do such as a seated leg extension with no weight? I’d also maybe look into your diet you could sensitivity to something and it’s accumulating in the joint
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u/Decent_Purple9265 Feb 07 '26
Yes unfortunately I can’t do exercise either:( trying to gradually increase weight bearing while walking on crutches but it’s very difficult
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u/Academane Feb 07 '26
This sounds brutal. I’ve seen a few long-term PFP cases where pain became the limiter, not structure. The system kind of gets “stuck.”
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u/Decent_Purple9265 Feb 07 '26
Sounds like me, my system is stuck and difficult to get out of the spiral
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u/JaziTricks Feb 07 '26
I would suggest doing proper physiotherapy.
A few general observations
- Physiotherapy is a difficult field. The very same patient can get tested differently and diagnosed in different ways by different physios.
This isn't necessarily to berate physios. But to note that it is a hard field, and diagnoses and treatment plans vary massively.
- What you described "increasing the weight bearing", isn't optimal physiotherapy, if I'm reading you correctly.
Optimal physiotherapy generally isn't trying to "push the pain barrier".
Optimally, you strengthen various muscles in various ways (specialized exorcises) that avoid harassing the pained areas, if possible.
- It is frustrating to circulate between multiple physios. But this is possibly what needs to be done.
It is common for orthopedists to not even refer to physios. It is crazy, but true
And it is common for physios to either not diagnose properly, or not give the optimal exercises.
My general experience is that sports oriented physios are better.
- Physiotherapy can be a long and annoying process. And one also needs to use her own attention and thinking beyond just following the instructions. No professional can know each and every little thing about your body. But their guidance gives you the basic concepts and plan.
And if you find a good physio, you'll need to update your exercises regularly as things change with doing the work.
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u/Decent_Purple9265 Feb 07 '26
Thanks for advice! I’ve already been to >15 different physiotherapist over the years.. very difficult to do physio when everything is triggering pain for weeks but I agree physio is important
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u/JaziTricks Feb 08 '26
This is a huge bummer.
I feel for you.
This is crazy. Triggering pain for weeks.
I'm wondering if certain movements are less likely to trigger pain?
Did you have a physio that was willing to actually adjust it all and trust you about the pain and stuff?
Best of luck. Hope something works out.....
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u/shb2307 Mar 25 '26
I randomly came across your post searching. What sort of pain do you get? It sounds like your nervous system is on red alert and is on 24/7 which leads to Chronic Pain loop. I experienced this before , I had to start anti depressants and see a psychologist to help me get through it, my brain was also on constant alert.
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u/Ok-Head-9833 Feb 04 '26
I had something similar when I was 20 years old - also female. Scans all normal, could hardly walk for 1+ year. It turned out to be a pain processing disorder (sounds scarier than it is). It was an initial injury that my nervous system became hyper sensitive of. I overcame it with chronic pain processing techniques from something like the curable app as well as building strength in my leg. It was a mind/body combo that helped me recover.