Saturday, March 11, 2017

Open Comment Forum Again, Your Turn to Speak!

I thought today that once more I'd turn over the mike to all of you. The open comment posts have turned into some of the best read recently!

Again, you're all welcome to discuss whatever you want. If, however, anyone is searching for a topic, here's one that's a bit different: What are some of the best resources you've found online that have helped you with your knee pain (this website excluded of course; I'm not scrounging for compliments :))

Otherwise, hope you're all well, and looking as forward to the end of winter as I am (okay, none of this applies to our friends south of the equator; forgive me for being Northern Hemisphere-centric). I want to ride my bike again but it's hard when the temperature is 16 degrees at six o'clock, like today. Cheers!

36 comments:

  1. Greetings Richard. I bought your book and i started to follow your advice. I had my own experience with doctors. Like the doctors you visited, none of the 5 doctors that i saw, asked me any personal questions about my everyday lifestyle. They didn't ask me about my job. They didn't ask me about my current or past sports activities. They didn't attempt to get a big picture of my life and realize how my lifestyle could affect my knees. All they recommended was VMO exercises. For the past few months i started to walk a lot. I also do kickboxing classes, which helped me lose weight. I do some weight bearing exercises to strengthen my leg muscles. And i take the stairs instead of the elevator. After 4 months i feel better, but i also feel i have a long way to go. I wanted to ask you about the glycosamine supplements. You say in your book that taking them is meaningless since, only a tiny portion makes it to your knee joints - everything else is dissolved in the liver. However Doug Kelsey, in his blog (http://dougkelsey.com/knee-cartilage/) recommends them. What is your take? Alex

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    1. Yes, I can tell that you too were surprised that your doctors didn't take a big picture view of you, their patient. And VMO exercises are at the high end of the uselessness scale, in my opinion. Anyway, sounds like you are on a better path now.

      On glucosamine: I'm aware of Doug's recommendation. Doug is great, and he helped me tremendously (without even knowing it!). But on glucosamine, I'm a skeptic. It starts with my own experience -- I noticed no perceivable benefit myself from taking it. When I started digging into glucosamine, I found more reason to be skeptical (as I explain in the book). And finally, more and more clinical trials are coming out saying it's useless too. (Just Google "glucosamine" on my blog and you'll see some of the evidence.)

      Of course, as with all things, I could be wrong in the end. Or even if it's a placebo effect, that's worth something if you happen to benefit from the placebo effect. Anyway, if you want to take glucosamine to be on the safe side, it should be fine (unless you're diabetic).

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    2. For the record, because others may see this thread, I haven't taken any sort of any supplements at all. Through losing weight, increasing walking and taking the stairs, i begun to see improvement on my knees, without quitting my sports. I feel there is still way to go, but i also feel that my knee is now "safe" and "protected" from further damage.

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  2. Saving My Knees is without a doubt one of the best online resources I have found, along with Dr Scott Dye's website. I have chronic synovitis of both knees (far worse in the left, although the right is catching up after two years of overcompensating for the left!). Knee pain has left me unable to work for the past 5 months (for the second time in two years!) and I am at my wits end with all the things I cannot do. I am now contemplating pursuing a partial synovectomy to remove the chronically enlarged, impinged part of my synovium that is causing pain and effusion. Has anyone else ever had this surgery? And if so, do you have any advice for me?

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    1. Amy, I agree this website and anything written by Dr Scott Dye on PFPS. Also Paul Ingrahams E-book which impressed upon me the radical extent of activity modification that may be required to beat PFPS.

      I'm pretty sure my problem for the past 4-5yrs was also chronic synovial inflammation, but 4-5mths on the anti-inflammatory Celebrex has got it under control. I've been off the drug for over a month now and continue to improve to the extent I'm almost up to racing (=participating!) in a small triathlon again. The anti-inflammatory is part of Dr Dyes treatment protocol.

      Have you tried a long-term course of anti-infmals yet?

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    2. Amy, sorry I missed you. I sent you an email via your web contact form. Let's keep in touch!
      -A

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    3. TriAgain, I took 400mg Advil (ibuprofen) twice daily for 5 weeks on Dr Dye's advice and my knees actually got worse during that time. I waited a while and then recommenced treatment with Advil and had to stop after only eight days. I am sensitive to some foods, products and medicines and when I eat, use or take any of them, they exacerbate my synovitis as well as making me quite ill otherwise. Aspirin, and now Advil, are among the things I cannot take, so I don't think NSAIDs are the answer for me. I am very, very happy for you that you had such a fantastic result with Celebrex. That's wonderful!

      Amy, I will eventually get around to checking the emails sent via my website - I'm a bit time poor at the moment. Thanks for writing!

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    4. Hi Amy,
      There's a blog called 'One step at a time' by Ali Rae. She covers some of the details of her synovitis surgery by Dr. Dye. Maybe you could contact her. Hope things work out.
      Ellie

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    5. Hi Amy. I had this surgery one week ago (late March, 2017). After two years of suffering from inability to sit with my knee bent or walk very far or very fast without anterio-medial knee pain, my orthopedist recommended an arthroscopy for what he thought was probably chondromalacia and possibly also a medial meniscus tear. After five months of physical therapy, relative rest, etc. without any change, I decided to do the arthroscopy. Turns out my articular cartilage and meniscus were in great shape. It was my synovium that was the problem. Surgeon said there was lots of scarring from chronic thickening and inflammation. I don't know how I got it. Could have been from all the running (hope it's not from rheumatoid arthritis, which runs in my family). Anyway, the surgery seems to have gone well. It's still too early to tell if it resolved my chronic pain problems. Still sore and stiff from the surgery, which is normal after one week. If anyone's interested, I can post back with my longer-term results.

      Pax,
      S.A.

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    6. Definitely interested Pax. Post back regularly and let us know how it is going.
      I'm forming the opinion chronic synovial inflammation is massively under-diagnosed. I even asked one 'knee expert' if I had that, and after a quick prod he said no. I'm sure he was wrong.

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    7. Hi TriAgain. It seems synovitis can manifest in different ways and sometimes can only be identified through direct observation during arthroscopy. My surgeon said I had a lot of scar tissue that wasn't visible on the MRI. That's what he removed. It sounds to me like the "knee expert" you mentioned dismissed the possibility in your case too quickly. In my case, the arthroscopy answered a lot of questions. It helped rule out cartilage degeneration and meniscus tear as culprits. Knowing what I know now, synovitis makes a lot of sense. That doesn't mean I'm necessarily out of the woods. It can be a chronic condition that may not resolve with surgery or may come back. I'll continue to post with updates on my recovery. I hope it can help others.

      S.A.

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    8. Yup, after thinking I was really on the mend, I've flared mine up again the last few days. Started with a bad sleep in an uncomfortable motel bed on a work trip, followed by cycling and doing some sissy squats on the same day. The difference is, I now know that all my cartilage has not magically disappeared, and with care I can get things back on track.

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  3. I have been experimenting with the Fasting Mimicking Diet that Prof Valter Longo at USC came up with. It's basically a 5 day 725calories a day with low protein and roughly equal mix of fat and carbs. I've done it 3 times. They've published various papers on it. What they've shown is that fasting puts cells into a protective state, clears out old cells and gets ready for regeneration with a huge increase in stem cells. The regeneration comes when you start eating normally again. It also lowers inflammation. After my third stint at this I feel strangely improved. A lot less pain and stiffness. I might be imagining it who knows. They haven't done any work on whether the regeneration occurs in cartilage that I can find but well anything that lowers inflammation has got to be good...

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  4. Hi,

    I don't know what to do ��. Im dealing with 6 years of bilateral kneecap pain and very close to cracking up. I haven't worked for the last 2 years as my job involves standing. I have difficulty standing, walking, swimming, cycling.....the only thing I can do sometimes is dance as it appears my body "let's go" somewhat. As in letting go of the stress, of the excessive muscular contraction around my joints.....a protective response by my body I guess.

    Onset of pain was 3 months post surgery on my abdomen + 2 months after my first skiing trip where I remember my quads burning + a few weeks after cycling on a new bike (that wasn't set up properly) up hills as part of a commute to work. I think a combination of all of these set me up for pain. I woke up one morning with bilateral kneecap pain and my right hip was also sore. I rested for 10 days, knee pain didn't resolve. My hip pain abated a few weeks later. MRIs of my knees and hips showed no damage.

    Pain initially walking and cycling but I was able to continue swimming for about 6 months before that became painful too. PT was ineffective and within a year I ended up completely sedentary spending a lot of my time sitting on the floor. Any new efforts at PT since then my knees just end up sore.

    The pain I have is an ache. If I've rested for days then I can go out and do a 20 min walk but a few hours later my knees will feel achy and I know I'll be sore the next day. If my knees aren't rested and I walk then I'll likely be sore within 8-10 mins. My body is totally atrophied from doing nothing and when I do anything it hurts. My movement patterning is poor as I avoid knee bends in any activity around the house. It feels like I can't win.

    I have no swelling on my knees, they don't give way, my ROM is good, on any examination they present as perfect knees. I am totally stressed about my quality of life and very worried about everything and I know that makes my pain and muscle contraction heaps worse. I've practiced lots of meditation etc but of no use when I don't have a plan to get out of this mess.

    I started on a 30mg antidepressant this week to try help with my mood/pain. As I haven't explored the medical route yet maybe this will bring some relief. I am really saddened that I gave to go down this path as it doesn't feel right either.

    I've read through a lot of the posts here & Richards and Doug Kelsey's books but because I don't know what my knees diagnosis is I don't know where to begin. Any exercise program be it walking or weight training is going to aggravate my knees and I'm afraid of pushing my body and doing more harm than good. Doing nothing of course hasn't done me any favours.

    Any advice much appreciated.
    Ellie x

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    1. Hey Ellie
      I remember having some of the symptoms you have described. Especially the delayed onset of soreness and the constant worrying about if your knees will be able to handle a certain kind of load. My best recommendation to get better and build some confidence about what your knees can handle would be to try a total trainer. Its mentioned in Doug Kelsey's book (Knees arthritis remedy).

      Initially, I started off by doing 50-100 squats on level 5 and I would have soreness the next day. However, soon I was able to handle level 10 and my delayed soreness started dissipating quicker. Also, slowly progressing through the levels of the total trainer helps to build confidence in yourself after many months of not being able to do much activity.

      Now I have graduated to full bodyweight squats. I add 10-30 lbs on top my knees are feeling particularly good that day. I wouldnt say my knees are fully recovered yet. There are certain activties and postures that cause them to get inflamed and I generally try to avoid those. You mentioned meditation as well. I tried this app called headspace. It did wonders for me as I was finally able to stop worrying about all the things I cant do and just focus on the stuff that I could control.

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    2. Thanks so much for your reply Superman. I tried the Total Trainer after Christmas. I was following Doug's
      Runner's Knee bible guideline so I did 15 mins at level 5/6. I was always sore a few hours later so I didn't continue with it. I'll try again with lower reps/duration. If you were sore the next day would you continue with the exercises anyhow or would you rest for a day or two before starting again?

      I am too stressed/angry to meditate at the moment, when of course I need it most. Thanks for reinforcing the idea though, I'll try again.

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    3. I would choose an even easier setting to start on the total trainer. Some soreness is ok. If it starts hurting for a few days straight, definitely take a day off. Although surprisingly I noticed after a few months of Total trainer my knees would hurt on the days I didnt use the trainer (off days).

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    4. Thanks Superman, I really appreciate your reply. Good to know some soreness is ok, I'm treating myself a little too fragily.

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    5. Hi Ellie,

      I have a similar problem in that my scans don't show much of anything, my ROM is great, but I can't walk unassisted because my knees are in such terrible shape. Like you they get worse if I use them and recover with rest.

      I'm in the process of getting better, but the progress is terribly slow. I don't really have a diagnosis either - I'm seeing Dye, and he says that I have synovitis but I kind of think that diagnosis is kind of like PFPS in that it describes what's happening, but not why, and only what to do about it to a limited extent.

      I'm not sure what about swimming was hurting you, but arms-only swimming was a big help for me back in the fall when I desperately needed a "break from gravity". I have a problem with the water wanting to push my legs in directions that hurt them, but I've learned what to avoid and have been doing ok.

      Another option I'm exploring is the Pilates reformer. It's basically like a total trainer in that it enables you to do a squat exercise on a sliding track so you're using only a fraction of your body weight.

      I wasn't able to find a gym with a total trainer anywhere, but Pilates reformers are quite common and I've been able to negotiate access to one. I'm trying it out tomorrow.

      I have a correspondence with a couple of other knee sufferers and it's been a big help. The psych aspects of this malady is no joke and it really helps to be able to talk to someone.

      Take care,
      A

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    6. Superman,
      When you say "soreness", what kind of soreness are you referring to? I've been avoiding anything that caused pain inside the joint, but from your post it sounds like that might actually not be such a bad sign? Or were you referring to pain in the muscles around the joint?

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    7. Hi Amy,

      Thanks for your reply. I'm considering a telephone consult with Dr.Dye but I'm guessing he will just diagnose synovitis for me too. Did he prescribe an anti inflamm for you too? Re:swimming my knees hurt when I kick my legs, I'll try using a float again.

      It's great to hear you are getting better even though v slow, you need that hope to keep going. I'd love to keep in contact if you'd like too, sounds like we're in a very similar boat. Its beyond hard staying hopeful.

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    8. Hi Ellie,

      Yes, I've been on anti-inflamm since September. Kicking while swimming is absolutely out of the question for me - I have to let them just trail behind.

      You are absolutely beyond right about staying hopeful, let's keep in touch. I don't want to publish my email, but there's a contact form on my website here: http://www.light-holder.com/contact/

      -A

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    9. For those who swim, I was the same, the kicking action of freestyle stirred my knees up. Luckily, one of the triathlon swim drills I used to do was freestyle with 'pull and band' which means your ankles are tied together with a rubber band (I made my own out of an old bike inner-tube) and you have a pull buoy (small, specially shaped piece of foam) between the thighs.
      This means your butt will float, your legs sink less, and you can get a decent swim workout done not using the legs at all. I still swim like this a lot, as my knees are still a bit twitchy with too much kicking.

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    10. TriAgain,

      I've heard about pull buoys, but not how to use them before. So does this let you "get decent a swim workout" by keeping your legs from sinking and dragging?

      -A

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    11. Exactly Amy. You can place them at different positions along your legs. I've seen people put them between their ankles, or knees, but I just have it right up the top between my thighs. Floats your butt, but also keeps your legs up. It can actually become a very relaxing way to swim if you also use a band at your ankles because you are not using the legs at all. Sometimes I dispense with the band, and that allows me to kick a little, but with less knee action. Of course you swim slower with a buoy than without one due to the extra drag, but it is not that noticeable and you get a decent workout.
      If you are looking for a tougher workout, rather than the slow steady plodding up and down the pool most people seem to do (which is better than nothing, but is not much good for weight control or getting faster), do your entire swim as 50m and 100m intervals, with limited rest between intervals.

      I can get a really good 25min swim workout done in my lunch-hour, doing 100m slow easy warmup, 4x100m hard (aiming for 1:35 per 100m) leaving every 3mins, 100m slow easy, 400m solid trying to go under 7mins, 100m slow easy cooldown. On the hard 100s, you should be really puffing at the end.

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    12. Update on the Pilates reformer: I tried it today and it seems very promising. It uses springs of various resistance and there are 17 potential settings.

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    13. Hey Amy
      By soreness I meant a combination of pain and stiffness. Depending on my level of activity my knees would feel restricted when I would bend then at night. If you are sitting with your legs straight and your knees feel uncomfortable then I think it qualifies as soreness. I should also mention that I have been using the pilates reformer all along and had it confused with the total trainer since they are so similar.

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  5. Ellie

    Look at this - https://www.youtube.com/watch?v=jGLisqHx8sM

    And anything else by Dr Scott Dye on the web about PFPS.

    Given your scans show no damage, it is likely to be what he describes - chronic inflammation of the synovial lining (+/- other structures in your knees).

    Been there for the past 4+yrs. Only way I could get on top of the inflammation was with prescribed drugs (Celebrex for 4-5mths), which as Dr Dye says is the #1 priority. Knock out the inflammation before worrying about strengthening.

    I did my first short triathlon in 5yrs y'day.

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    1. Also watch this one by Dr Dye from 2:54 onwards

      https://www.youtube.com/watch?v=fybd4MZe3jk

      This sums up all that is wrong with the current surgical approach to PFPS and really set me on the right track to getting a life back.

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    2. Thanks v much for your reply TriChat. Dr. Dye has a totally different perspective alright. I'll have a think about anti inflammatories. Congrats on your return Triathlons!

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    3. Thank you TriAgain again for replying too. A lot of food for thought.

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  6. Congratulations for triathlon!

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    1. Thanks gcoza

      It still hurt (my cardio system, not so much my knees) & I was 12% slower than my best over that course (which was about 10yrs ago), but I finished ahead of a lot of kids who are 1/3rd my age, so can't complain.

      Still need to go softly softly though so as not to shrink my envelope of function, and keep patiently working to expand it.

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  7. Please read through my history about my knee pain which has ended up in a diagnosis of saphenous neuritis- I do not often see stories that end like mine but Dr. Scott Dye says they are actually quite common:
    KNEE HISTORY

    Athletic history:
    Lifelong dressage rider, currently ride my own horse 45 min a day
    Began running at 36 years old: 2011 ran first marathon. 2012 Olympic tri and second marathon. 2013 3 13.1, 70.3 tri. 2014 3 13.1 trained for 140.6 tri gear lost so no race but otherwise full training year. 2015 3 13.1 and 3 Olympic tris. 2016 3 13.1 and 140.6

    Pertinent details:
    I am a veterinarian
    Father is Mayo trained orthopedist (dad quotes about my injury: “You can’t put the tred back on the tires.” “Its a nothing, there is nothing wrong with you. You overdid it. Just cut back and keep running and live your life.”)

    History of injury:
    July 19 on a long run felt stabbing pain in medial aspect of left knee near insertion of VMO. Stopped running but continued cycling and swimming. Did probably 4 more century rides with only very minimal very occasional irritation that I would work out of. Would only very occasionally feel irritation in knee later in day or during daily activities.
    August 19 developed pain in medial aspect of right knee. Not as severe as initial injury to left knee. Went to osteopath who is an Ironman he diagnosed patellofemoral pain and said keep training and get thru race.
    Sept 25 Ironman no pain during race or after race so I came home and was excited to run again. Started running 6 miles three times a week with day off in between. Minimal stiffness in knee which I would run out of after first mile. Within a month significant knee pain during the day which was delayed after running.
    October went for recheck at doctor and started PT. PT said to cut back on running so I spent the month swimming with pull buoy, occasional sets with flippers, every day and doing PT exercises religiously. PT exercises: clamshells with band, leg raises with band, straight leg extension with ankle weight, balance exercises, core exercises, front, back, side walks with band, glute bridges all worked ok. Lunge with twist, step ups with overhead raise, squats, single leg deadlift all irritated knee but did them anyway. After two months of this no significant improvement. Still irritated during the day especially at work. After 6 weeks I decided to try running again per my father’s recommendation and the fact that PT said try. Able to run with no pain during run for about 3 miles. Built up to 4 miles over the month. Knees continued to be irritated with delayed pain.
    December bilateral MRI in addition to knee films of both knees all normal.
    January 11 Second opinion with orthopedist said cannot say what is causing pain. Steroids wont help. Most likely not plica as no pain on palp and not seen on MRI. Said take 6 more weeks rest with pull buoy swim and walking alternating days continuing PT exercises that dont irritate knee

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  8. Saw the Pain clinic they diagnosed bilateral saphenous neuritis- field blocked medial knees with maracaine and kenalog. Immediate improvement. Now one week out and 95% improved.
    Three weeks out and now living with ADL PAIN FREE!!!! Able to walk 1 mile 3x daily with no pain. On gabapentin 300 QID.



    When/how do knees hurt:
    Prior to July 2016 I never, let me repeat NEVER, had any knee pain at all whatsoever.
    Knees can hurt at insertion of VMO area medial and right beside knee cap. Common place if I feel during swimming, sitting with straight legs, or standing for a long time in same place.
    Occasionally will feel full below kneecaps. Happens at work towards end of day or if I rest for a while laying down and then stand up.
    Never hurt on stairs (although I can hear crepitus in both knees on stairs left more than right)
    Never hurt from sitting down with legs bent or crossed. IN february they started to hurt when sitting.
    When I was running 4 miles in december I would develop heat in the area of the medial condyle at the end of the run which I could feel afterward- would resolve with ice. Happened to both the right and left knee on different days.
    Right knee does have clicking sensation usually when I get off my horse or get up after laying down during the day and start walking something feels odd, then knee clicks, then i can walk normally. No pain felt with the click. Left knee has no snapping or clicking sensations.
    Pain is never greater than 1/10in the morning, mostly it is just irritation. But with increased activity I absolutely have increased pain up to 3-4 while at work with burning pain below the patellas.
    Two weeks into second attempt at rest. Knees 80% improved BUT still having random irritations thru day. Usually walking 3 miles but one day walked 4 and while no pain walking significantly more pain later in that day. Even swimming irritates knees in the medial aspect of patella, medial femoral condyle. I am a two beat kicker which is a VERY minimal kick and I have on neoprene shorts to aid in not kicking and I still feel irritation more right knee than left.
    KT tape somewhat masks the pain during work.
    Starting in February: Left knee very occasional pain directly above or below patella on quad or patellar tendon. Right knee occasional pain below near patellar tendon or on medial side near IT band. Both legs occasional pain at end of day in quads, VMO.
    With second round of PT following 3 weeks rest I find that while the intensity of the pain is less the frequency and consistency of the pain is more. In addition, the pain finally feels as if it is behind me knee cap and inside my knee where previously it was mainly on the medial femoral condyles. ALso, my right knee is having a lot more of the clicking, catching feeling than it ever has before. I think the PT is hurting me. The pain is there earlier in the day and with all activities- walking, sitting, driving, riding pony, swimming with pull buoy, standing at work. By the end of the work day it is like chinese water torture as there is no position I can get into that alleviates the pain. I only work 2 12 hour days a week but I am a veterinarian so there is a lot of standing, squatting, leaning over going on.
    After three weeks strict couch rest I have pain medial to the the patellar tendons. Lidocaine patches OTC seem to help with this pain. My right leg also has developed pain in the area of the pes anserine area which I can feel when I walk . The area of the pes anserine can also be tender on the left leg if I palpate.
    3 Weeks post injections from pain clinic and I am 95% improved. Absolutely amazing.

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    1. Very interesting story, with the saphenous neuritis diagnosis. Thanks for posting all this and please keep us updated on how your knees feel (and if that improvement holds up). I may do a post about this, as it sounds like the pain medication was quite beneficial.

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