Saturday, August 12, 2017

Low Dose Naltrexone for Damping Inflammation?

Sometime visitor “Racer R-X” (that’s his full handle, if I recall correctly) occasionally drops a comment below one of my posts.

I’ve maintained for a while that I get the smart readers in the world of knee pain – thoughtful, analytical people who are in full-on search mode for ways to get better. Every time I hear from Racer R-X, I’m reminded of this.

He’s pretty much beaten his knee pain and is back on his bike, powering up mountains. It took him a while to reach that point, he learned a lot, and I’d love for him to tell his complete story here at some point. (There are bits and pieces in the comments he’s left, scattered over a number of posts.)

Anyway, he dropped in a link to an article, "The use of low-dose naltrexone as a novel anti-inflammatory treatment for chronic pain."

First, people with stubborn knee pain usually suffer from the bad kind of inflammation: chronic inflammation that has a harmful effect on their joints. Getting inflammation under control is important to getting better.

This article suggests that low doses of naltrexone may be helpful for certain people:
Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome. We review the evidence that LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells.
Yes, no overt mention of knees, but complex regional pain syndrome may be a factor in some cases of knee pain, according to one reader of this blog who has researched this extensively.

Naltrexone apparently is used mainly to treat dependence on alcohol or opioids. It’s sold under the trade names Revia and Vivitrol, for example. If you’re having trouble with subduing inflammation, I encourage you to take a look.

Advantages of taking naltrexone include its moderate price (less than a dollar a day) and infrequent side effects.

Disadvantages are worth pointing out too: It’s unclear how to determine the best dose for particular individuals, and the default dose commonly used (4.5 mg) isn’t a size that tablets are now created in. Also the authors note: “Even though naltrexone has a long history of safe use with a wide range of large dosages, we know very little about the long-term safety of the drug when used chronically in low dosages.”

As usual, my standard disclaimer applies: This is not in any way my endorsement of this drug. I’ve never tried it myself; I don’t know anyone who has either. But when I was dealing with knee pain all the time, I eagerly read about anything and everything that might help me. So consider the above link in that spirit.

44 comments:

  1. Hi,Richard! Here in Brazil we use it to treat immunne disords and cancer. Naltrexone/low dose is well know to boost the immune system.
    It is a alternative treatment and only in the black market we can get the drug.I intend in the future make an experiment with it and will share the results here.
    Up to now every stage you described in your process of healing i`m experiencing.Your Book is compass for me.Before i was lost. Thanks so much

    ReplyDelete
  2. Hi Richard,

    Read your book and blogs. I was wondering if you could answer some questions for further clarification:

    1. When you talk about setbacks, could you describe what was the worst one you had during your recovery process? What kind of symptoms, duration, frequency, etc.

    2. During your setbacks, did you ever fear that you had made things worse and would never recover? If so, how did you deal with those thoughts, that life is getting worse, fast?

    3. Can you describe your symptoms in further detail? At any point, did you have an ever changing roster of sets of symptoms?

    I am a 37 year old female who suffered an injury to my right knee 2 months postpartum. I have always been in excellent shape with no excess weight to lose (5'4" 110 lb), and no family history of OA, and no knee/hip problems ever. During my pregnancy, I exercised with lunges and squats, in order to strengthen my legs for the birthing process. It went well. I resumed high impact activities after the 6 week OK from my OB/GYN. I suffered an injury while trying to stand up from a kneeling position, where my RK buckled inwards. (september '16). Long story short, MRI's and Xrays said they were fine, just "mild chondromalacia patella". But couldn't squat, kneel, stairs, jump, etc without severe pain and a large "skip" in the RK patellar tracking during flexion (let's call this symptom Skippy). Interestingly enough, no pain for 2 weeks after the initial trauma, then pain progressed over a couple days to the point where I couldn't stand.

    Went through months of PT in the last year from 2different places, also ruled out RA. At one point, April-June, things were finally looking up, although Skippy was still ever present but to a lesser degree, and squats and kneeling were still huge no-nos.

    But in late July, suffered a huge setback (suspect PT lunge session that went awry, after being told to "go deeper" and resulted in RK pain; and ramping up walking activity with hills to strengthen legs). Was down for a couple days where I couldn't walk, but due to a completely different set of symptoms that come and go, that I had NEVER experienced before (the cigarette-lighter burning sensation you mention in your book, Left Knee also symptomatic as well, twinges, jabs, aches, and moviegoer's knee).

    The interesting thing is, Skippy has completely gone away. But only to be replaced with a new set of symptoms that aren't any better, and possibly worse (before Setback, never had any pain at rest). It's been 3 weeks since this setback, and every day brings a varying recipe of symptoms. Overall, am getting better, but am actually still worse off than before the setback. Trying to reset the clock from 11 months progress to zero again...it's demoralizing and draining.

    So, just wondering how you were able to keep your spirits up, and if things ever got so bad to the point that your setbacks set you back to point zero or even negative.

    Thanks!

    ReplyDelete
    Replies
    1. I had a number of setbacks. I talk about some in the book. My biggest setback was probably the failed attempt at leg exercises in the weight room, to build up my quads. What a terrible mistake. It left my knees burning all the time -- and before that, I would usually have some good moments in the morning. I can remember shuffling around the streets near my office when my knees burned so much I couldn't sit and do my work comfortably. I was completely miserable.

      But at some point, you either give up or try to find a way forward. I used research to get smarter, and meditation to get calmer. What got me through the day was my strong belief that I really could heal -- not because of dumb hope, but because of what I was reading in clinical studies. And in the end, thank God, my program worked.

      Delete
    2. Thank you Richard for your response. Were you able to squat/kneel/stairs despite the setbacks? I remember reading in your book, that you were able to do stairs, but it was standing in the elevator and sitting at your desk that aggravated the burning.

      Delete
    3. I didn't really have a problem with stairs (unless I was carrying something). Squatting and kneeling though I tried to avoid, as they could cause flare-ups later.

      Delete
  3. I wish I knew if and to what extent inflammation was part of my chronic left knee pain (overuse injury from running) so I'd have a better sense of what my treatment options are. When I had my diagnostic arthroscopy in March the surgeon said my cartilage looked great, meniscus looked great, everything looked fine except for abnormally thickened synovial tissue (which he removed) along the medial border of the patella. When I met with him after the surgery he explained I had synovitis. I know synovitis is an inflammatory condition, but from my research I also know it's usually a secondary condition (a response to something else). When I asked the surgeon what caused the synovitis he said he didn't know and just left it at that. The removal of the thickened tissue helped with being able to sit without too much burning irritation, but I still have lots of soreness and stiffness if I try to do anything but slow walking on even surfaces. I'm unable to descend stairs normally, and exercise (running, cycling, swimming, elliptical) is out of the question.

    The surgeon and physical therapist tell me that the pain related to weight-bearing activities is due to muscle weakness, which is causing patella maltracking. But this part confuses me. Which is the underlying problem: patella maltracking or synovitis? Are they related? Is one causing the other? And if so, which is which? These are the questions that nobody seems to be able to answer for me. Yet understanding these issues seems fundamental for being able to accurately treat the problem.

    Many of the muscle-strengthening exercises my physical therapist is having me do aggravate my symptoms. I've found, as did Richard, that slow, regular walking every single day really helps with pain and stiffness, but I've hit a plateau and don't know where to go from here. This keeps making me think about the inflammation question and whether my doctor is doing enough to address that aspect of the problem.

    Pax,
    S.A.

    ReplyDelete
    Replies
    1. Hi Pax,
      Sorry to hear about your struggle. I have no idea about your condition and also I have no medical background. However, I have experience with thickened and inflamed synovium. Also have had a lot of muscle atrophy. So I share my thoughts.

      It is hard for me to believe that someone, apart from you, can tell if the synovitis is gone. I had and still have to some extent pain from weak muscles but when I recovered from the synovitis, I could tell clearly the difference. For me, there was something inhumane the way synovitis hurt. It is something I haven't experienced before in my life. And I had my share of pain before that.

      Frankly speaking, If I were your surgeon, I wouldn't have said you had synovitis but rather - I excised some inflamed synovium that I saw. Full stop. From my point of view, nobody knows if he found it all or how the knee reacted to the intervention. In my experience, I strongly believe that poorly treated and undiagnosed injury of the head of the fibula inflamed with time the entire joint, including the structures of the head of the tibia on the other side, as well as damaging the plicas. Could a doctor see all of that during arthroscopy? I have no clue but somehow doubt it.

      Also, from what I gather, there are not that many doctors who have great expertise in this field. You may want to consider doing distant consultation with Dr. Dye about your questions. This is just some brainstorming.

      Finally, you may find it interesting to know that I have a lot of soft tissue damage from the long standing inflammation but now that it is gone (I am completely sure though I know that I have to fight and protect from it till I breathe), I am not constantly miserable despite the structural damage, which causes a lot of irritation and dysfunction as well pain from the initial cartilage overuse injury. However, I clearly feel the joints are striving towards balance and the there is an ongoing process of healing. Although I do not know what that will look like in the end with the damage I have. However, sometimes it is helpful to remind myself that there are many cases where knees go into almost complete homeostasis despite considerable structural damage. And vice versa. You never know.

      I wish you good luck and all the best!
      Sveto

      Delete
    2. Just to add that despite the abovementioned structural damage and lack of clean ROM, I am able to strengthen my quads. I do not use the elevator to get to the 6th floor, just did 600 repetitions on the TT and do not worry for the morrow etc, etc. When I had synovitis I was literally crawling to the toilet and couldn't climb stairs.

      So you may want to question quite thoroughly your doctor and PT why they believe such debilitating pain comes from muscle weakness or any structural damage, which you have none if I understood correctly.

      S.

      Delete
  4. Hi Pax,

    Sorry to hear what you are going through. It totally sucks. I started keeping a daily log, with notes of symptoms at what times, and tracking activities (Fitbit has been helpful in that regard), and assigning an overall score in the mornings and evenings (like Richard did in his book).

    In short, I think sticking to what makes you feel better, without overdoing it, is going to be key in the recovery process. And planning a 2 year recovery process (if doctors can rule out everything else, and don't know what's causing the issue and say "you should be fine." If they don't answer, that means they don't know.).

    Recovery is extremely slow. But, when I look at the average score on a biweekly basis, the numbers show improvement (not much, but again, I've learned to adjust my thinking to a 2-year plan).

    What I've also learned is that just because someone has a degree, doesn't mean they necessarily know your body better than you do, if you have done your own research and study as well. I am mindful of the exercises I've learned from PT, but I modify or delete any that aggravate my knees for the time being. Then I'll try it again in a month. If you can assemble an incline plane with a smooth surface, you can do modified activities at a fraction of your body weight. Doug Kelsey explains how to do this on his blogs/books, although he uses a Total Trainer. I haven't tried that, but it's something to explore.

    I think it's also important to minimize NSAID use, and use only to manage uncontrolled inflammation. Clinical studies show deleterious cardiac effects with chronic use.

    Finding the underlying problem is limited to Xrays and MRIs with today's technology. I think what they should be doing, are dynamic images, but it's not financially possible as a business model (well, more like, the current system has no incentive to make that a feasible model. Chronic pain is a money maker!!). Imagine having an MRI for every degree of flexion of your knee. It would probably take the entire day. And even if they have that data...would the doctors know how to analyze it?

    Good luck.

    ReplyDelete
    Replies
    1. Hi Elly. Thanks for sharing your insight.

      To add to what you wrote in your final paragraph, even an exploratory arthroscopy doesn't always find an underlying problem. My doctor expected to find worn cartilage under the patella (Chondromalacia) and/or a torn medial meniscus (my symptoms are concentrated on the inside of my knee). But it turned out I had neither of those problems. The only objective pathology he found was the thickened cartilage from chronic inflammation. And as I explained in my post, that solved a piece of the puzzle but not the whole mystery.

      I'm still undecided how I feel about prescription anti-inflammatories, but I completely agree that you have to modify exercises to what works for you. My physical therapist is very knowledgeable and competent, but I suspect she has little experience with non-specific Patellofemoral Pain Syndrome. Right now I'm taking a break from her because I'm doing extended traveling. I think I might try to find another physical therapist who specializes in my condition. (If they exist!)

      My heart goes out to you about the frustrating you're feeling.

      Best,
      Pax

      Delete
    2. Elly C, what an excellent point you made about the fact that MRI images are not dynamic! My MRI images on which Dr Dye could see synovitis are the same set of images another surgeon used to tell me my only problem is CRPS!

      Delete
  5. Elly and Pax

    My theories on all this have reached the following points:
    1. The knee pain you describe (which plagued me for years) is chronic inflammation of the synovial lining and perhaps some other structures. You have to beat this to get recovery. Pax, even though some of your synovium was removed, I'd guess there is still inflammation there. And probably synovial thickening. This can take years to get under control. I'm sure mine is still somewhat irritated, though much less so.
    2. I think this chronic inflammation is often triggered by another knee injury, which may resolve itself but the chronic inflammation lingers.
    3. PTs are dangerous and simplistic when it comes to chronic knee pain, esp synovial inflammation - stay away from them like the plague. As Elly says, you know your own body best, and the tiny subtle things that make it better or worse.
    4. I disagree with Elly about anti-inflammatories. For me, they were the key to getting my inflammation down without going to the extremes of movement limitation and quitting work as Richard did. I'm now off them and able to do far more with my knees. Def not 100%, but at least 80% better.
    5. For me, they key to know I'm heading in the right direction is the duration of flareups and the nature of the pain. I still get them but they last days, not weeks or more. And none of that constant burning/tingling.

    All the best.

    ReplyDelete
    Replies
    1. I've been using "Pax" as a sign-off, but it seems that's how I've become known on the blog, so I'm going to use that from now on as my username on my posts.

      Hi TriAgain. Thanks for your reply. I'm considering asking my doctor about Celebrex or another anti-inflammatory, even though he hasn't been keen on it when I've brought it up in the past. I know I need to build more muscle strength in my injured leg (which is visibly smaller than my healthy leg after two years of muscle atrophy) if I want to get off this plateau, but many strengthening exercises are irritating. Recently I've been focusing on stretching and muscle strengthening exercises I can tolerate fairly well, like four-way straight leg raises with ankle weights and short arc quads (bending and straightening my knee with ankle weights and a rolled-up towel under my knee). Elly, this, along with gentle walking daily, has really helped with painful patella snapping with flexion.

      Last year I purchased and read Doug Kelsey's book. It's been a while now. I should go back and re-read it. I've discovered that there are no easy answers with this, even with the best doctors (I've consulted multiple in two countries), and that it's an on-going process of trial and error. At least I have more information now after the arthroscopy (knowing my cartilage and meniscus are fine is an important piece of the puzzle).

      Pax

      Delete
  6. Thank you TriAgain,

    I believe I was misunderstood about my statement regarding NSAIDs. I still stand behind what I said about NSAIDs: "I think it's also important to minimize NSAID use, and use only to manage uncontrolled inflammation. Clinical studies show deleterious cardiac effects with chronic use."

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3158445/
    https://www.health.harvard.edu/blog/fda-strengthens-warning-that-nsaids-increase-heart-attack-and-stroke-risk-201507138138

    Nowhere did I say to never use them, and in fact, said to use them in cases of uncontrolled inflammation. But, having been there myself, I know that it can become a blurry slope of what one believes is uncontrollable vs controllable. Humans are designed to be pain averse. And if 400 mg every 4 hours provides some relief, why not 600 mg for better relief? And since we feel better, perhaps we start moving in a way that our body isn't ready for yet, but we don't know that because we have dulled the pain? Also, there is the question as to how much pain to block out in order to treat the underlying causes of the condition.

    Clinical studies do indeed show deleterious CV effects with chronic use.

    I apologize if I wasn't more clear. NSAIDs should be used cautiously and only when necessary, as they come with their own serious side effects with chronic use.

    Glad to hear that you have recovered where you no longer need them. =) Chronic knee pain is a condition that no one seems to take seriously (it's not fatal, after all), nor is well understood by professionals, until they experience it for themselves.

    May I ask the following: How long was your recovery process? Do you have any speculations as to what triggered your condition? Did you ever have any arthroscopic procedures? What kinds of activities have been most beneficial to you in your recovery? What are the range of activities you are able to do now? At your lowest, how were you limited and for how long did it last? How did you deal with feelings of hopelessness, if it ever happened to you? I am struggling.

    That burning is pretty awful, isn't it. And I thought labor pains were bad. They are, but you know they are gone as soon as the baby is out. Dealing with angry knees is a constant worry of "if I climb these 5 stairs, is it going to be an agonizing burn and crepitus for the next 2 weeks?"

    Well, on the bright side, no one ever died from chronic knee pain, unless it was a self-inflicted fatality from being unable to cope with the loss of functionality. Sorry, I'm at a low right now. Females have to deal with monthly hormone fluctuations too. =P

    ReplyDelete
  7. Also TriAgain, can I ask, Which NSAIDs worked best for you, in your experience, with the max amount of benefit and least amount of side effects? And what dosing ranges did you find that provided the best balance of relief with minimal side effects? Thanks!

    ReplyDelete
    Replies
    1. Hi Elly

      To answer your questions:
      1. My recovery process was about 5 years - but really only accelerated when I got on anti-inflammatories for 5mths (Celebrex 200mg tablets, once per day). I had no side-effects.
      2. Hard triathlon training - esp hard cycling on an indoor windtrainer I suspect started me down the path, but an arthroscopy for a sudden medial meniscus tear in my L knee was the straw that broke the camels back for BOTH knees.
      3. I've had 2 arthroscopies on my L knee. An exploratory only one in my early 20's when I hurt my knee at rugby. It showed no damage. Another on the : knee at 49 to remove a torn piece of meniscus.
      4. Most beneficial in recovery. Easy walking. Wandering about fly-fishing. I also swam freestyle with a pull buoy and ankles strapped, but that was more to maintain fitness without stressing my knees.
      5. Now I can do triathlon (swim/run/ride) and quite substantial leg weights (50kg deadlifts, body weight sissy squats, 20kg kettlebell swings) BUT I only do a about 25% of what I used to do in volume as my knees are still prone to flare.
      6. At my lowest I could not squat/kneel, we sold our house with a large garden and got another with a small easy care garden. I ended up on anti-depressants (still on them - they have helped me in other ways), I even contemplated dual amputation at once stage just to get rid of the terrible burning. I was very low. I was (am) an extremely (too extreme?) active person, and I didn't know if I could live this way anymore. It was complete sh*t! Everything in my life suffered.
      7. I dealt with the hopelessness by finding websites like this and people who had come out the other side. Racer-X was a huge help in this regard. We emailed each other (he's in the US, I'm in Australia). He even posted me some exercise bands which he used to strengthen his legs without over-stressing his knees. I just sent them on to Sveto in Blugaria last week - The Brotherhood of the Traveling Bands lol!
      8. There was also a point where I realised some leg weights (esp deadlifts, kettlebell swings and sissy squats) were building my leg strength without the long-term negative effect that triathlon activities caused. This gave me some hope and, along with the Celebrex, stopped the negative spiral and got me moving in a positive direction.
      9. Reading all Dr Scott Dyes work and esp watching his videos gave me hope too. It got me thinking chronic inflammation was more my issue, as opposed to cartilage damage. That was when I took his work to my GP and said I wanted to trial anti-inflams, which he agreed with. BUT as you rightly say, even with the anti-inflams, you have to still be very careful with your knee activity. It is a two-pronged approach. Plus I found a TENS machine (cheap - only $125) really helped quell the pain of my flare-ups.
      10. Re anti-inflams, I also tried Neurofen and Mobic, but never for more than a week or so. It required months on Celebrex plus careful use of knees to really break the inflammation cycle, though I recall getting relief within days.

      Delete
  8. Hi TriAgain,

    Thank you for sharing your experiences. I can't imagine having to go through 5 years of pain and figuring a way out. I will ask my doctor about the possibility of inflammation in addition to chondromalacia, and Celebrex options, after I work up enough energy to make an appointment (after 2 PCP's, a rheumatologist, 2 ortho specialists, and 2 PTs in the last 11 months...I don't know how much more they can help steer me in the right direction, and I am too depressed to bother with another inconclusive appointment right now, what with a full time job, a new baby, and my incapacitated knees).

    So the L knee injury ended up compromising both knees? That has happened to me, too. Initially I had a R knee injury with no L knee symptoms. Then I suffered my Setback in late July, and the major symptom that was plaguing my R knee (skipping kneecap during flexion, could not bear enough weight for kneeling/squats/stair descents, but at least I could sleep in peace and sit in a chair for hours with no pain) has disappeared...to be replaced by this godforsaken burning in BOTH knees (and now they are both very angry...have been hobbling/shuffling feeling like an 80 year old, but am now walking slowly feeling like a 65 year old with arthritis.)

    Sleep and sitting at rest are no longer periods of respite, for the past 3 weeks. But, am trying to just take it as slowly as possible, and take whatever gains I can. I can tell myself, I was able to walk 1000 more steps this week than last week, so even if I still have pain the whole time, the pain must have decreased to the point where I was able to walk 1k more steps (I'm not pushing myself through the pain. I always stop and sit down whenever it hurts. Then of course, have to usually get back up and shuffle around again, since sitting too long, hurts).

    Still, it's a paltry gain. I faced a series of 5 shallow stairs today. Even using the handrail to pull myself up, it was too much for my knees to bear. I often wonder if I will ever get better. Or if in 5 years, I am going to be living life from a wheelchair.

    It is hard, to be stuck in that train of thought and keep picking yourself out of it, despite the pain and lack of concrete answers. I will say, you are much braver than I am!! I have never contemplated dual amputation. Instead, I jump right to suicide, something I have contemplated. But I know that it would be unforgiveable for me to do so, as a wife and mother. Still, I know that the pain and the months are chipping away at my personality, and I am not the happy carefree and active person I once was. And I cannot be engaged with my daughter as normal moms can. I can't hold her and walk around. It's hard to get down and up from the floor where she plays. It hurts my knees when she sits in my lap. I have to push her away when she giggles and waddles too close to my legs, for fear of upsetting my fragile knees that feel like thin glass. I feel so cheated. And she is growing up so fast. I have cried a lot, but usually by myself. Life has to find a way to go on, after all.

    ReplyDelete
  9. Post continued (HTML limit)

    One of my biggest dreams was to someday take my currently 1 year old daughter to Lake Wedgmount in Whistler, Canada. I love hiking. I never thought at age 37 with a perfect health track record (up until this condition), I'd be praying just to be able to walk normally, and get up from a toilet without handrails, and not feel a pitfall in my heart at the sight of a step. Holding my daughter in my lap would be wonderful, too, and carrying her around...but I try not to think about that too much, that usually makes me shut down for a number of hours.

    So I know about when you say that this condition, takes the active part from your life and you have to deal with just basic movements of getting around. But I'm so happy for you that you have finally regained abilities to do all the things you mentioned, even if it's only at a 25% capacity. Running sounds pretty spectacular to me. Are you able to ascend and descend stairs with no problems? It gives me hope for my condition as well...that it CAN be possible to get out of this dark pit of despair.

    Did the doctors ever tell you what your diagnosis was? I have been reading about chondromalacia patella, but more recently have also started reading about patellar tendonitis. I suppose it's possible to have both.

    Thank you for mentioning the exercises that worked for you. I'll look into trying them out, cautiously, when I feel that my knees are strong enough. I have not heard of Dr Scott Dye. But thanks to you, I have just found his 56 minute youtube video. I'll be watching it!!!

    ReplyDelete
    Replies
    1. Hi Elly

      This - "...to be replaced by this godforsaken burning in BOTH knees (and now they are both very angry...have been hobbling/shuffling feeling like an 80 year old, but am now walking slowly feeling like a 65 year old with arthritis.)"

      Is exactly how I felt. I went from smashing out half-ironman triathlons at age 49 to hobbling like a 90yo. It was the speed with which this happened (a matter of months) that had me thinking the medicos were all wrong and there had to be another answer. I even asked one knee expert in Sydney could I have synovitis and he did a little prod and said "definitely not" - but he was dead wrong. I never got a diagnosis other than the dreaded PFPS (which basically means we don't know why your knees hurt). However Dr Dyes videos got me on the right track. He also has a 25min one which you can find on Youtube.

      Your path and symptoms are almost identical to mine & Richards, and Racer-Xs. I'd say a very strong chance you have synovial etc. inflammation, and even though it feels like your knees are gone forever, they are not. The burning sensation indicates to me your main problem is not the chondro, but a loss of tissue homeostasis in your knees = chronic inflammation. And chronic inflammation can lead to further cartilage deterioration. Getting on top of that inflammation is the #1 priority.

      I can't imagine how much extra stress you'd also have with a new baby, and it sounds like you have depression (not surprising). I don't think the knee experts are likely to help you much more, nor pain experts (I ended up with one of them too and he put me on Lyrica - did nothing). The most useful medicos for me were the local OS who did my original meniscus tear and warned me against any surgery for my PFPS (excellent advice), and my GP who was open minded enough with my own research to prescribe the anti-depressant/anti-anxiety drug Celepram, and later the anti-inflammatory Celebrex. The Celepram helped deal with the pain, stress, loss of function more easily. The Celebrex got my knees on a much faster path to recovery.

      From what you've written, I'd just go to your local doctor (not a knee specialist) and discuss these medication options. You don't have to be on them forever, and they can help you out of a very deep hole like they did me. Also give him the link to the 25min Dr Dye video if he does not believe you! I had to take a 1.5page of my knee history which I wrote to my Drs to really get any traction. Once they realised I'd already tried numerous things and knee experts, they started to listen to me more seriously.

      Stairs - I'm still a bit careful on them - often use the handrail, but much better than before.



      Delete
    2. Hi Elly,

      it is heartbreaking to read about your suffering. In some respects you remind me a lot about a certain nightmare I found myself in about 1,5 years ago. However, it is very easy to project one's experience with the knee pain onto others. I found many people doing that on my struggle. They had some nagging pain for a month and thought they know it all and it is the same, and I wildly exaggerate in my reaction. Even doctors. Especially doctors. One suggested straightforwardly that I am just a drama queen when I refused to squat when he asked me to do so. Later, he told my family I just need a psychiatrist. However, previously, after my first misdiagnosis, I learned quickly to discard idiots. But my family was quite confused, which created a lot of issues I had to navigate while in a dire state.

      So, please, be just very careful with your movement and also with what people tell you about your condition!

      If I could go back in time, I would have avoided trying to move as much as possible and looking obsessively at my fitbit stats as you might be doing (that is a guess) and also trying to push forward (it took me an year reaching that point).In the beginning, I was just totally clueless about my real envelope of function as you may be (another guess). Mine was zero.

      At the same time I was thinking I do not move enough but that was my delusion, which was based on comparison with my healthy function. One has to quickly forget about that. For now try to accept that is a meaningless point of reference. That can lead to further troubles!

      Did you try rest? And by rest I mean real rest, which may take weeks or even months. Major part of my healing begun when, after trying many things, I just read Dr. Dye's theory that the knee is a self-repairing mechanism and let it repair itself by offloading the joints completely for months and getting on crutches. Later, I spent many more months doing about 1000-2000 steps a day and just gently moving the joints in the air (and had some adverse affects if I increase the frequency!). It may be hard to believe, but this is a major part of what helped me move on the healing track. Many people told me it is a terrible idea to get on crutches. In hindsight, this was one of the best ideas ever. It started as an experiment and luckily my intuition told me this is the right thing to do for quite some time. Wish I've done it from the beginning.

      As I understood it, Dr. Dye's idea is that the real envelope of function is loading of the joints that is completely asymptomatic. Now that may not be entirely possible in many circumstances but it is very good idea to keep in mind.

      Do not lose hope by any means! However, prepare mentally for what can be the biggest trial in your life so far. You'll need all your inner strength&perseverance.

      Best of luck,
      Sveto

      Delete
    3. Thank you TriAgain and Sveto,

      This is my 4th attempt to write a response. I restarted the browser--it was accepting my clicks for "publish" but erased my responses instead. lol!

      First of all, thank you sincerely for taking the time to write. Hope is a scarce resource these days, but reading abour your recoveries helps me.

      TriAgain--writing a note for the MD is a great idea. I've just done that, and will bring it to the MD office this week. I'll also ask about Celebrex.

      Sveto--I had not thought about "not resting enough". I used to be so active, so for what I'm limited to now, feels like all I'm doing is resting. But perhaps my envelope of function is close to zero as well. I cannot stand/walk without symptoms. I tolerate standing and walking short distances. You are right, I have been focused too much on my steps, and not enough to my knees. Based from what I've read, there appears to be a line between not moving enough and moving just enough, in order to get healing. It has been difficult with a full time job and baby.

      I did take 1 week off 2 weeks ago, and felt small improvement (ie, didn't get worse). But then I had to go back to work, and here I have lost the small improvement. Although I requested accommodations for limited standing, it's still too much for me. I try to sit at the desk with my legs elevated, but the position is not ideal and now I'm getting back tenderness.

      I am going to request medical leave. Either my MD will supportive of that, or won't, and will push for surgery (he did mention arthroscopy on the last visit, but that was before I had burning pain symptoms). Because I did start to improve with 1 week of continuous rest, I would want to explore further rest before surgical intervention.

      If that doesn't work, I'm also thinking of going to see Dr. Dye, since I live CA.

      I'm pretty disillusioned with the entire medical community at this point, with the exception of Drs. Dye and Kelsey.

      Delete
    4. Sveto--am also so sorry to hear about your experience with doctors. What an a**hole, to disregard your pain and then disclose your personal private information about your health, to your family, with a recommendation to see a psychiatrist. In the United States, if you did not consent to your health disclosure, that is a HIPAA violation and that doctor would be subjected to huge penalties and fines, with a risk of license suspension.

      Delete
    5. Elly, if I were in your shoes I wouldn't waste any time and consult Dr. Dye asap. He is the guy who can tell if you have problems with the synovial lining. Not many doctors pay attention to that. Many of the guys I consulted saw my MRI but only one surgeon in Munich noticed enlarged synovium on the images. And by that time, I've went through enough literature and gathered sufficient amount of subjective observations to self diagnose myself. At that point I was on top of the inflammation and was searching for his opinion what to do with the damage in my plicae, which again I self diagnosed myself perhaps correctly. In my experience, doctors just look at the cartilage, the menisci and major structural problems.

      Also you have to understand that for active people this small amount of movement may seems rest but that may not be the case if your synovium is terribly inflamed. Then any movement can be counter productive so you do not heal at all but perpetuate the problem. I had to go for around 50 days on crutches and then many many many months just going to the fridge and the toilet and moving the legs in the air very very slowly. All this time in terrible pains. Only then my body&mind started winning the fight and I could expand my envelope of function with short walks which also took quite some time before I could start working on strength in the muscles. So it is slow beyond imagining. But also this was the right path for me, which is the only thing I care about. It is not fun but there are guys who spent 6-7 months on crutches in order to quench the fire a bit so they can move around the house. So do not waste time wallowing in self pity, rather feel lucky you can tolerate short distances and have Dr. Dye nearby to check your synovium because there are folks who are much worse and cannot consult anybody but clueless doctors who suggest bizarre stuff.

      I am crossing fingers you get better as soon as possible!

      Warmly,
      S.

      Delete
  10. Have any of you considered trying a Regennex procedure? I have been struggling with patellofemoral pain for almost three years and I am not considering a stem cell treatment. Just wondering if anyone has any thoughts on those....

    Scott

    ReplyDelete
    Replies
    1. If you have the type of loss of tissue homeostasis which Dr Scott Dye describes in his videos, stem cell treatment will just be an expensive waste of time (it costs $9000 per knee here in Oz). It is really only an option where you have a definite serious loss of cartilage in the knee. If you don't have that, forget it. I know some people with bad cartilage loss who swear by it, and other who it does not seem to have helped.

      Delete
    2. What is your basis for this claim? If he talks about stem cells in one of his videos, could you send me the link? I have read stem cell success stories for various knee problems, which don't appear to be based on the degree of cartilage loss.
      Scott

      Delete
    3. First, so we are clear, I'm talking in the context of what I call true PFPS which is caused by loss of tissue homeostasis.

      Based on the reading I've done, and anecdotal evidence from people who have had stem cells.

      Dr Dye does not talk about them. The PFPS Dr Dye treats is due to loss of tissue homeostasis = chronic inflammation. Stem cells may treat the structural cause (e.g. cartilage damage) which perhaps later triggered chronic inflammation, but my research does not suggest it will assist the chronic inflammation. I had PRP treatment (which is supposed to stimulate a stem-cell like reaction, and assist inflammation) but it did not in my case.

      There are much simpler and cheaper ways to treat loss of tissue homeostasis based on what I've read - the keys being avoid over-loading/aggravating the knees (so stay a mile away from PTs), and anti-inflammatories (DR Dye seems to do an initial Kenalog injection - which I did not have - followed by a course of anti-inflammatories - which were the key for me getting things to settle down to a point where I could engage in some leg strengthening = less stress on the knee = upward cycle of improvement).

      What other knee problems apart from clear structural damage (cartilage, ligaments) have you read that stem cells might treat? I've only read about them being used for cartilage loss/damage.

      Delete
  11. I guess you are right; most of what I have read is that stem cells are for mainly structural repair, but they do advertise treatment for patella femoral pain/chondromalacia (which I realize after researching are not the same thing). I guess I am just hoping there is a quicker way to heal this injury. I had bilateral meniscectomy over 2 years ago to repair some minor tears, and the doctor decided to clean up some roughening on the back of my kneecap (grade 3 chondromalacia), and I have had anterior knee pain ever since. So, it would seem at least part of my pain is coming from structural damage... Would you agree?

    ReplyDelete
    Replies
    1. That is exactly what happened to Racer-X. The surgeon played God once he got in there and did some 'cleaning up' on his patella which sent Ed into years of knee purgatory - from which thankfully he has recovered by doing similar to what I did, but he beat his inflammation naturally where as I used drugs.

      From my reading, there is no evidence messing about with the cartilage on the back of the kneecap can come to any good.

      The critical issue in all this - which both the experts & the laymen seem to miss, is the nature of the pain. I've had both patella chondro pain (as I have some pretty ugly damage there) and PFPS pain.

      People say "I have knee pain under my kneecap", but in my experience patella chondro is a sharp catching pain with certain movements, while PFPS is a constant burning/ache/stiffness that can be there all the time to varying degrees. Mine thankfully settled at night so I could sleep, but once I got up and started moving about it started up again.

      I never once had one of these over-paid experts specifically ask me what sort of pain did I have. Bloody useless.

      I still get chondro pain, but that is much easier to live with than PFPS pain, which thankfully has virtually gone now.

      I think (from reading his book) Richard had PFPS pain - the burning/tingling/loss of function etc. more so than the chondro pain.

      Delete
  12. Hi!
    Im 24 years old and I have 3 kids. Oldest is 4. After my second child I started doing an excercise program that had lot of squatting in it. This was about 2.5 yrs ago. I also biked/walked on hilly golf course. I started getting pain on my left knee and it swelled up a lot. I couldnt sometimes even put weight on it. I stopped doing the squat, probably wasnt even able to go on that position. I kept biking/walking on the golf course. I became to notice that the knee would be really swollen the day or two after I exerciced. So I stopped exercising. At some point my right knee had started swelling also. Fast forward.. I still have the same problem. I had MRI done 2 yrs ago of the left knee, nothing wrong. Lots of fluids. I have pains going up and down the stairs, going sitting, getting up from sitting, a sharp pain on the sides often when i do stretching.. I have become quite depressed because of this. I dont see any future for my self. I have seen so many people for this and my family dr said its arthritis, rheumatologist wanted to give me medication, and physiotherapist says patellofemoral pain. I am just soooo done with this all. I dont know what to do. I google my symptoms a lot and seems like not so many people have so much swelling.. and one thing also, my knees dont start hurting when Im sitting. I dont have pain at night time. I just dont know what to do anymore. Its effecting my every day life, as a mom and wife, effecting my husbands mind and our whole relationship. I am just so broken that its hard to show love and happiness.
    I would appreciate if you could read the text and maybe even give your opinion. Thank you.

    Oh and also, I take a lot of different supplements, and I quit sugars and whet, it helps so that the knees wont get so so puffy.

    ReplyDelete
    Replies
    1. You mention a change in diet helped -- maybe someone else here might want to chime in? We've got a few regular readers who believe that dietary changes are very important, though I don't think they made much difference for me. Because you've got so much swelling, you may want to make sure you rule out something like rheumatoid arthritis ... sounds like there may be something systemic going on? Good luck.

      Delete
    2. During my ordeal (which is only partly over), I became born again diet believer. Many of the doctors who otherwise take the Hippocratic Oath, which is one of of the oldest binding documents we know about, have long forgotten the words of the great man: “Let food be thy medicine and medicine be thy food.”

      However, the conundrum is to figure out what is best for your particular body and condition.

      I found a research about a test called ImuPro, which shows some promise.

      http://journals.sagepub.com/doi/full/10.1177/0333102410361404

      The disclaimer is that it is expensive and I haven't tried it myself. I just know about it from a lady who was hit by multiple sclerosis a decade ago. She spoke very highly of the benefits of the test. She is also doing quite fine given her condition and scores of lesions in the brain. That is why I searched for her opinion about healing issues.

      It will be interesting if someone else can share experience with diets and food tests.

      Good Luck, Katja!

      Sveto

      Delete
    3. Hi!
      Thanks for all your messages. I appreciate it.
      I have been trying to go physiotherapy but seems like my knees are just getting worse from trying to strength the muscles. I also got orthotics that I started to use. The knees have been worse than for a long time now. I just want to give up.
      I have seen a rheumatologist, he sent me to do a blood work and everything was fine! I dont understand. This all started from a rapid increase of exercising 2.5 years ago. I have had Mri done in the left knee 2 years ago (knee not bent)
      Its just killing me not knowing what to do and where to seek help from. I have 3 little kids and Im barely able to take care of them mentally. Physically I cant go outside and start playing with them. Maybe I just start taking anti depressant and believe that something will happen some day.

      Delete
    4. Katja,
      See what I wrote to Elly because it may be useful to you as well. You can make a distant consultation with Dr. Dye so he can assess if your synovium is inflamed in which case any strengthening, exercise and movement is just the opposite of what you need. It is very counter intuitive but there are case where you have to do nothing for a long while in order to get just a bit better.

      Very best wishes,
      S.

      Delete
  13. katja_tuulia, you have my complete sympathy. I know what a terrible situation you are in and understand the physical, psychological and social impacts it has.

    Regarding diet, in my own personal case, a multitude of food intolerances were contributing to the knee pain I suffer from as a result of chronic peripatellar synovitis, and to symptoms of rosacea and pain in other joints as well. Removing sugar, dairy, gluten, and additives such as artificial colours and preservatives (among other things!) from my diet put my rosacea and small joint pains into remission and did play a role in reducing my knee pain, although I must add that while my knee pain has improved somewhat, I have had no improvement in knee function. (That is, the physical activities that cause my knee synovitis to flare up will still do so if I take part in them, despite my dietary changes.)

    What amazed me the most about the many food intolerances I identified with the help of a dietitian and a clinically relevant elimination diet program was that I am highly sensitive to preservative 202 (potassium sorbate), which is found in some medications and in many processed foods, including the medication I was taking for knee pain! I couldn't understand why I got temporarily worse every time I took a certain brand of pain killer until I noticed the preservative listed as an ingredient on the pill box. I have now proven a direct relationship between preservative consumption and flares in my knee pain in the absence of all other possible causes.

    If I could give you a take away message from my own experience, it would be to look at possible systemic causes for your knee pain in addition to reducing your physical activities to a point that allows you to experience some pain relief, as well as considering the use of a nerve (not muscle!) stimulating TENS machine.

    ReplyDelete
  14. There is this research about the anti-inflammatory drug canakinumab that got my attention lately
    http://www.nejm.org/doi/full/10.1056/NEJMoa1707914#t=article

    ReplyDelete
    Replies
    1. And here is the article that led me to the research https://www.theguardian.com/science/2017/aug/27/anti-inflammatory-drugs-may-lower-heart-attack-risk-study-finds

      Delete
    2. And perhaps I need to add something because it is not clear from the links. The drug is currently tested for some arthritic conditions. So it may be a good idea to keep an eye on the outcomes.

      Delete
  15. Thanks Sveto, yes, I still have options to explore. :) I can't see Dr Dye immediately though, so I saw my usual ortho to give him an update about my latest injury that sent me into this burning spiral. Going on Medrol Dose pak 4mg for 6 days for joint inflammation, then follow up appt in a week to assess. Quads noticeably atrophied. Ice as much at i want and can try 5 min heat therapy 2* day to aid in healing. Might do a cortisone shot if the Medrol doesn't work. Bad burning this morning, suspect that it was because i tried to stretch my quads (bending them slowly one at a time on a massage table, i didn't put weight on it but i guess i can't even flex that far). I have sulfa allergy which renders me incapable of tolerating celebrex. Just trying to get through the pain and immobility one day at a time. I feel like i will never get better. But i reread the posts here about people who beat it. It helps me keep fighting for another day.

    ReplyDelete
  16. F/U: Medrol appears to be helping--much less burning on day 2, can walk halfway decently with compression sleeves. Am keeping activity very minimal and behaving as if I wasn't on drugs, because I'm aware of the danger of masking pain. After reading TriAgain's experience with NSAIDs, realized every person's case is different and in some, it may be warranted, just to get the inflammation under control so one can start the healing process. biggest worry right now is that i am getting "false healing" by masking the pain, and that when the Medrol dose pak is over in 4 more days, the pain will come back the same or worse. reviewing my Fitbit stats thanks to Sveto, i also realized i was pushing myself more than I shoul dhave been. i've also made in appt with Dr. Dye for next month (soonest I could get), and have MRI/Xray/bone scan scheduled. His staff was very helpful after I explained I'd be flying in from out of town just to see him, and they made arrangements to get everything done in one day.

    Oh yes...and my current Ortho? A nice enough guy, but (TriAgain, you might laugh sardonically at this), glanced at my pain logs and symptom documentation progression for 15 seconds...then at the end of hte 10 minute session, asked "did you want me to keep these?". Lol. When I asked what was going on with my knees, he said, inflammation can happen from chondral fissures. I pretty much know exactly what I did to set it off, though (3 day uphill/downhill walking with baby in stroller, proved too much for my 110 lb small frame). Mind you, this isn't a random dude either. He's got the pedigree from the fancy schools and practices in a fancy area. Not taht Yelp is a great indicator for health care practitionaers, but he does have 5 star record there as well. Maybe he's really good at surgery. But that's what I'm trying to avoid...because I think by the time I qualify for surgery, I'll have wasted all the precious time I had to figure out a way to prevent that. Modern medical practices really need to catch up...so disappointing. At least I have hope with Dr. Dye for some real, concrete answers.

    ReplyDelete
    Replies
    1. Hi Elly

      I think you are on the best track now seeing Dr Dye. And you are right, you need to be really careful with your activity on the Medrol so you don't over-ride its effect. Knocking out the inflammation is your #1 priority. Err on the side of caution with all movements.

      Your current Ortho is where 99.9% of them seem to be at when it comes to PFPS, as are 99.9% of physios and PTs. It is disappointing.

      Delete
  17. Just wanted to give an update. I'm doing better in the sense that symptoms have stopped getting worse, and have lessened in intensity and frequency. I don't have as much pain at rest anymore. When I keep my legs extended, my knees feel normal (used to burn at rest, too, wish was driving me insane.. not exaggerating). Slowly walking very gentle on flat ground with lots of rest.

    What i think helped:
    Medrol dose pak: helped to break cycle of CONTINUOUS pain even at rest
    LOTS of TRUE REST. like other ppl have said, don't compare rest to how you used to be before. in my case, i wasn't resting enough and was fixated on fitbit stats. I took leave from work and sent the baby to daycare all day. I literally rested for 4 weeks just living life from a couch, legs extended, knees iced a lot in the beginning, and gradually less so as the burning started to subside.
    Sleep position: everything hurt my knees except lying on my back legs straight. but this would result in red hot stiff knees in the morning. i talked to my 3rd PT, who came highly recommended by my rheum whose own family sees her. She is very gentle and has real knowledge.. example,, she was helping me through a very gentle stretch and when i said there was pain, she asked me to describe it. then she repositioned her hands along my knees and muscle and stretched it again and voala, no sharp pain this time. my muscles are so tight and weak, and she knew exactly how to position her hands to assist with painless stretching. anyways she suggested soft towwl support under my knees during sleep to prevent locked position all night. i did so, and next morning noticed a 50% reduction in the usual morning symptoms.

    ReplyDelete
  18. plenty of sleep and water. i can't measure exactly how this helps. but when i don't get enough of either, i definitely feel worse.
    eating a really healthy diet, high protein, low sugars low carbs.
    being low weight to start with. less pressure on knees
    bi
    boiled chicken feet. it's pure, natural collagen. better than the powdered stuff. yeah it's gross in the beginning bc , feet. but it tastes like the broth you cook it in, and gelatinous. i don't know if it's the timing, but after 2 weeks of eating this, i could look back and say "i am definitely on a slow long path of positive healing now".
    NEVER PUSHING MYSELF THROUGH PAIN. i am never doing that again!!! every time i did that, a guaramteed set back. listen to your body.
    PATIENCE and prayer/meditation. im not religious but i was having suicidal thoughts a lot. i felt like what's the point of living life in my 30s in the body of a crippled 90 year old. if i kill myself now, my baby too young to remember me and my hubby can just remarry, win win.l for all. yes, this is how terrible chronic pain can be. it slowly kills your soul. you need to find a way to have mental health in tact. nyquil at night also helped me sleep.
    I'm still a long way from 100%. but i have hope now, bc the worst +(i hope) is over. you just have to figure out the path of healing. it's not easy. but you have to balance rest and low load high rep movement, be aware of 6-24 hour lag time for knee feedback, and NEVER push through pain, and know it can take aLONG time. i still live life mostly from a couch. it's torture for us once-active people. but every week, i can do a little bit more. definitely have a larger envelop of function than 4 weeks ago.

    ReplyDelete
  19. This is great, Elly. Thanks for the update. I always read these reader updates avidly, hoping for good outcomes! Please check back in later and let us know how you're progressing, cheers.

    ReplyDelete