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Author Topic: PFPS sufferer sharing his story and seeking advice.  (Read 383 times)

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Offline CWDK

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PFPS sufferer sharing his story and seeking advice.
« on: April 29, 2018, 09:17:05 PM »
Dear KNEEtalk,

I am a 33 year old PFPS sufferer through almost 1.5 years now and my name is Mads.
I am one of the many who have tried so many things but still have chronic pain in both knees. That is why I reach out to you as I have followed your research and read about many PFPS patients who have benefited from your understanding of anterior knee pain.
I am a pharmacist and I am used to trust in scientific studies and certainly not trust in mumbo jumbo (I wish I did – maybe the placebo effect could help me).

I have already read a lot in here - thank you all for sharing. I surely hope that some of you will take the time to read my story and look at my questions below.
I will share my story with you – I guess the more details you get, the better. I will love to call you sometime and pay for your expertise. I am just so tired of trying hundred different things – and I have also given up to some extent and lost hope. So I would like to keep it simple and seek advice from a person, in whose knowledge I trust.

I have always been very fond of endurance sports – both running and cycling. The gym has never been anything I’d enjoy, but running and cycling like crazy has been my thing. I was the person that trained too much and progressed too fast (easy for me to see in retrospect). I trained together with a good friend to run for a marathon. One day at one of the 18K runs I stepped in a rather large hole and strained my hip/outer thigh. I felt a stinging pain in the hip and IT band. Didn’t think more about it and continued to run a week after. But then in September 2016 at a 15K run, I felt a stinging pain on the outside of my right knee after running 5K. I went to the GP and was diagnosed with “Runner’s Knee / IT band syndrome” and was redirected to physiotherapist. I didn’t progress much here – wasn’t too happy about her. She told me run even though I was in pain…
Times went by – I tried different exercises and was in general very annoying about my Runner’s Knee. I just wanted to run! One cold morning in February 2017 I thought to myself: “Well if I can’t run, then let me go back to cycling”. Then I sat up on my singlespeed mountainbike with maybe a little too heavy gearing and too low saddle and biked like crazy to work (8 kilometers). When I came to work I suddenly had a constant tingling pain in both knees. I went to the GP once again and he told me it was normal signs of overuse and told me to stretch my quads and rest. I stretched the quads, rested and applied Voltaren for 14 days. And well the constant tingling pain actually disappeared! But I did the (I guess classic rookie-) mistake to sit up on my bike once again and – bam, the pain was back with a vengeance!
And that’s when my nightmare and mental rollercoaster began; Trying to get rid of the pain! This lead me to visit many different PT’s and try different treatments – none of them helped me. I tried to do weight-bearing squats and other weight-bearing exercises – this just aggravated the pain A LOT. Also cycling, even with low gearing also hurts.
To be honest, I’ve been chasing the easy solution – just take a pill or find the right stretch and then everything will be back to normal. But that is certainly not the case – this is about being patient (which I am not).
I’ve been to the hospital and had different scans done (will describe them later on) and they diagnosed me with PFPS in both knees together with IT band syndrome in right knee. And well, recently they have discharged me with the words; “sorry there is nothing more we can do!”.

I am an office worker and sitting for so many hours every day is a nightmare. I try to stack some things below my desk so I can put my feet up – this helps a bit. But in general I am in bad condition and I do not trust my own body any more, as I haven’t had any success for quite a while. Together with the PFPS, I also got carpal tunnel syndrome and back pain – I feel like a 90 year old man.

So I guess I am pretty much on my own now – I need your help and advice! I think my next move should be based on staying within my envelope of function. I have read quite many promising recovery stories with positive results from staying within the envelope of function, but I do not know which actions to take or how to proceed. I guess sitting down and waiting is not enough?

Below I have tried to list the vital things from journey with PFPS and at the end I have some questions on how to proceed;


What works?
•   True rest: Putting my feet up and really rest my legs works. It will ease the pain to some extent, but the constant tingling is still there
•   Stretching/foam rolling quads/hips/abductors/adductors/hamstrings: Stretching also eases the pain. I have managed to get rid of the pain by stretching my quads one time – but it came back.
•   Voltaren gel: Well to be honest I do not know if it helps, but I feel that it eases the pain. And I can see it also help for others
•   Warmer weather: During a vacation to Cyprus the knees were A LOT better than during the cold Danish winter.
•   Stop worrying: When I get stressed or worry too much if I’ll ever go back to sports or get pain free (or this will be permanent or lead to further tissue damage) the pain will just get worse. When I distract myself by seeing friends or do other great stuff in my life, the pain will lessen.

What does not work?
•   Bad PT’s: I have tried many personal trainers and physiotherapists. Some of them have used the old school theories with strengthening the VMO, others have focused on the hip. Some have “prescribed” heavy-weight bodybuilding exercises like squat which aggravated my pain (although deadlift seemed to be okay). My issue is that I read many scientific papers and if they deviate too much from the scientifically proven results, I lose trust in them. And I also feel like I have spent thousands of dollars on bad advice that just ended up aggravating my pain.
•   Cycling: I have read that other people benefit from this, but this will just worsen the pain for me.
•   Prolonged sitting with bent legs: I guess this is pretty well known for many PFPS sufferers.
•   Patella taping: Gave some short-team relief and stability in the knee – but no long term relief
•   One-legged exercises: Everything I do on one leg seems to aggravate my pain.
•   Knee brace: Seems to help a little when e.g. biking – gives me the feeling of stability and heat around the knee. But does not help anything long term.

Examinations
•   X-ray: Everything looked fine – absolutely no patellar tracking issues (which makes believe more and more in Dr Dye’s work and less in the old patellar misalignment theory)
•   MRI: Everything looked fine besides very little cartilage damage, which, according to the doctor, should not be a contributing factor
•   Ultrasound: Everything looked fine and jumper’s knee was ruled out.

My possible contributing biomechanical factors
•   Very poor ankle dorsiflexion
•   Poor stability very standing on one leg (Lack of strength in the hips)
•   Different leg length

Mental status
The mental part is the worst for me. I have lived with chronic pain from I wake up in the morning until I go to bed – every day for 1.5 years now. I do not live with pain – I AM the pain. I am afraid of doing anything wrong to aggravate the pain – and e.g. if I do exercise I feel the slightest pain I stop everything and stop trusting the process.
I have been very obsessed with going back to sports as it was a very big part of my life. I have been living in the past for sooo long; “I used to be able to run, so why can’t I run now?”.
I have lost quite a bit of social life that I had through cycling and running as well. I am quite sure that I would get a rather high score on the depression scale if I went to my GP. This impacts me in so many ways – I hope lost hope and it is very very hard for me drag myself up from the hole I dug myself into. I truly would like to have some success in some kind of way, but haven’t had any yet – so I do not trust in myself or my own body.
I am also very confused. I have read a thousand articles and webpages with information about PFPS. I have too much knowledge but I do not know how to utilize it or what to trust. At the moment, it is very hard for me to convert the knowledge to action.

How are the knees today?
I still have the constant tingling pain in my knees. Both my knees are also very stiff. One PT told me that my retinacula are possible shortened. I do not know what to believe in, but they are certainly very tense and sore. I feel my ankle flexors and knees are so stiff that I feel like I I am walking on sticks instead of legs. My legs feel very stiff and at the same time weak!
If I either walk too much on stairs/hills etc, squat down or bend my feet in outward positions I feel a sharp stinging pain.
Both my knees and hips are clicking/popping like crazy – that was not the case before I got this condition.
Of course, prolonged sitting with bend knees will aggravate the pain and stiffness. And at the few times I have biked, I can really feel how I’ve lost function in both knees. They are so stiff and sore – feels like they are filled with potato flour.
I am truly afraid that this will last forever and lead to e.g. osteoporosis or simply just never get better – it sometime keeps me awake at night.
I have yet to explore more about the mind-body connection. I have never been into meditation or yoga - i've always been the person who meditated during a long hard run.
To be honest, i am not very good at taking care of myself. I have had a hard time prioritizing my sleep and i drink too much coffee. I have also had a very stressed job, but i have just got a new job where i begin 1st of June - so hopefully it will give me the energy to focus more on my knees.

Questions to the readers
•   How should I translate the “Envelope of Function” theory into action, besides resting? I see that many people have revamped their rehab and strategy and started with light walks. What else have you done?
•   Have anyone in here had any progression by exercising? My current plan would be to have focus on my glutes, hamstrings and hips and begin with light bodyweight exercises + doing a lot of stretching and foam rolling.
•   Do you have any other advice? I would love to receive some advice or hear some recovery stories that can give me some hope.
•   Some of you mention that you have had success with pain relief by rewiring your nervous system. Which technique have you used?


Thank you for reading through this.

Kind regards,
Mads

Offline tensters

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Re: PFPS sufferer sharing his story and seeking advice.
« Reply #1 on: April 30, 2018, 08:26:33 AM »
What worked for me was gentle exercise and time and patience.

I followed the ideas in this article to get over multiple simultaneous injuries/issues: http://www.ismoc.net/nopillsnopain.html.

Good luck with your recovery.

« Last Edit: May 15, 2018, 11:10:03 AM by tensters »

Offline Brandon123

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Re: PFPS sufferer sharing his story and seeking advice.
« Reply #2 on: April 30, 2018, 08:50:10 AM »
Sorry to hear about your struggle, Mads. Chronic knee pain for long periods of time certainly wears you down, physically and mentally.

Have you read the following (success) story:

http://themindfulcaveman.com/my-knee-story-part-1-injury-and-recovery/

http://themindfulcaveman.com/my-knee-story-part-2-reflections/

In addition to some hands-on tips in part 1, many of us who struggle with long term knee issues will recognize much of what he writes in the part 2 reflections.
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline Geronimo

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Re: PFPS sufferer sharing his story and seeking advice.
« Reply #3 on: May 02, 2018, 05:38:06 PM »
your symptoms are like mine and most likely it's chondromalacia patella. i've been dealing with this chit for a few years now just like you with ups and downs.

here's what I  learned:

1. Rule #1 which should be the law for everybody with this condition , both for your body and your mind. DO NOT AGGRAVATE THE KNEE.  Even if you are in deepest hole even a small positive trend will do wonders to your mind and soul, on the other hand, every step back is a nightmare. For me this means:

1. No squats, lunges or anything that puts extreme patella pressure. 
2. No bicycle.
3. No standing for extended periods of time (last time I  had to stand for two hours and it sent me to the biggest flare up ever)
4. No stepping machines.
5.  Don't let your muscles shrink, do whatever you  can, but do it.

Here's what helps me:

1. Walking. I walk 7k+ steps daily. Sometimes I walk 15k steps. This makes me feel much better and I can actually reach livable condition with some discomfort but no pain.
2. PT. I  do theraband, I  do leg raises with weights, i do foam rolling, i do stretching, i swim, I do everything I can to improve my strength without aggravating the knee.
3. TENS unit also helps to distract from pain and discomfort.
4. i always have pain pills with me and take them when i get too much pain which affects my quality of life (no opiates though).

Another thing you  have to understand is that knee is slow to heal, so it's a very long journey, you  can spent two months improving yourself and then one concert where you  had to stand for a few hours or a dozen of squats will send you to square one.

Also, i'm not sure which state you  are in, but i've found out that smoking a few hits of weed helps with depression, so you  can try that with your PCP if this is an option.

hope this helps. 

Offline BusterCatLegs

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Re: PFPS sufferer sharing his story and seeking advice.
« Reply #4 on: July 01, 2018, 02:55:51 PM »
Hi Mads,

We are lucky enough to be sharing the same exact symptoms. I am only 3 months into this terrible nightmare at this point but it is looking like a really long long road ahead. I'm a 39 year old woman living in NYC who was very active. My life has been turned upside down.

I have done tons and tons of reading. It seems to me that nobody knows exactly what fixes this condition or what causes it. For people with long term issues it seems that all of the success stories I've read involve very limited physical therapy and lots of rest and gentle walking. So this is what I'm going to try I guess.

I am struggling right now to control the inflammation. I had it down to a near zero pain condition 6 days ago after nearly three months in my left knee and right knee was maybe a 2/10. Then I walked up and down two flights of stairs and I am back to square one. The thing that got me to the glorious condition I was in a mere week ago was tons of rest. I spent many days inside waiting for the burning to go away. Then I added house chores, so very limited walking. Even taking a shower in those days had me in tears nearly every time. I finally started walking outside a tiny bit. Maybe around the block or something. Then I felt so great that I went and took the subway and ruined everything.

I'd love to hear about your progress in the last months. This is going to be a long journey.

One question I'm wondering- I'm so afraid to go back to physical therapy...how important is maintaining muscle strength? Is it really more important than rest and allowing things to heal? Should I just give up on trying to gain strength? It seems like that doesn't work out too well for so many people...




Offline James NZ

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Re: PFPS sufferer sharing his story and seeking advice.
« Reply #5 on: July 09, 2018, 02:08:56 PM »
Hi Mads,

As frustrating as it is, be thankful that you are trying many different options before looking at surgery. I got pushed through the system, had surgery without doing any reading and ended up 100 times worse off. I too am 33 and was highly active prior to this. I have done a lot of reading and believe 100% you can recover from this back to 100% if you give the joint the rest and recovery it needs. Surgery is absolutely the last resort as there are no guarantees. Especially when scans are not showing any damage. I'm picking you have loss of tissue homeostasis. A Dr Dye special!

Have you watched Dr Scott Dyes videos on YouTube? He is a true patella femoral specialist and surgery minimalist. I am travelling from New Zealand to meet with him in San Francisco next month. He has also published papers which are available for download. Fingers crossed he can help, I am very cautious about who I trust with this now as most are just out to line their pockets.

Another great resource I found was  a book called saving my knees which is for sale on Amazon. Keep gaining knowledge and remain hopeful that it will get better.  Wishing you all the best.