It seems like we’re overdue for another open comment forum. Talk among yourselves in the comment section below!
What you can use this forum for: (1) Introducing yourself, and some of the knee pain challenges you’re grappling with (some other readers may have a thought or two about what might help you (2) Including a status update of how you're doing (3) Writing about anything else you want to!
If you’re stuck but want to contribute something, here’s a question to get the ball rolling: What’s the (surprising) thing your knees hate? In other words, if you say your knees hate carrying an 80-lb. safe up six flights of stairs, no one is going to be surprised. If, however, your knees hate warm massages, well, that’s a bit odd.
So there you go! I hope everyone is doing well. I just finished riding 52 miles on my bike; the legs feel tired, but in a good way. The knees continue to be happy. Cheers!
My name is Amy and I have lived with bilateral knee pain (which was initially unilateral) for over three years. I have a few pain-free days on occasion, but only if I have rested all day and avoided all triggers, such as sitting with my knees bent. My knees actually do hate massages. Every time a physiotherapist massaged my knees, they got worse very quickly. This made perfect sense once I learned that I have synovitis! My knees also react badly when I carry anything over about 2kg in weight.
ReplyDeleteAh, whoops! Didn't realize I was revealing your secret, Amy! :)
DeleteSorry Richard - I don't understand your comment. What am I missing? :)
DeleteSorry, I was making a bad (and apparently confusing) joke because I wrote that it's odd if your knees hate warm massages, not realizing that there was someone out there whose knees hate warm massages! :)
DeleteUnderstood. :-D I should have re-read your post.
DeleteHad to cut this into several sections, but would like to share my story and hope no one will mind that I fll this space:
ReplyDeletePart 1
Hello everyone. I am taking this open post session to join the club of doctor-perceived helpless cases of chondromalacia/“PFPS”. First of all, reading this blog, and also your book, Richard, is basically the only thing that keeps me sane these days – so my sincerest thanks, to all of you. The intelligence of the hive with all its accumulated knowledge is really really appreciated.
Here is my story, and apologies in advance, because it is long and will be a familiar read. I could copy-past large sections out of Richards books or the many other stories of fellow sufferers from these pages. I will write down my own long story in any case because I know how much I have benefitted from others doing the same. Just ignore it or skip individual sections as you like.
About 3 years ago I went through a for me very traumatic break-up from my long-term partner, which caused me to do something stupid. My emotional pain was so extensive that I didn´t know where to put it, so I started intense sport activities from almost zero exercise at that time. I was 27 and in best physical health. My body had never failed me before. The worst thing I once had was a cracked forearm from falling onto the curb at age 3, and I only remember wearing a cast from pictures. I had always been an active and sporty person, eaten healthy, and looked after myself. I was never a fitness person, but I love all sorts of ball games and would play active league games of all sorts of things, 2-5 times a weak. However, and I now believe this was one problem, 2 years prior to my injury I relocated for a Masters Programme and more or less gave up my sports in the new city. First reason because I didn’t find the right teams to play in, and secondly I was consumed by the Masters. I also had to give up my usual transportation of using my bike to go to varsity, because biking in the less developed world is not the same as in Europe. Then a PhD programme followed at the same University, and I had been sitting most of the time during these academic projects.
After the break-up I started running, boxing, hiking up mountains from almost nothing. Intense sessions, basically every day. This was half a year into with my PhD, and it went ‘well’ for 3-4 months. The exercise was my drug out of the emotional daily rollercoaster I couldn’t handle. I wasn’t mentally functional without. And I was getting physically really strong. But I was also literally asking for physical pain. I wanted to turn the emotional pain into something ‘real’, I wanted to feel my muscles ache and run through all of that mental pain, and just leave it behind. I was getting too good for my daily running of a 7-10km trial, so I looked for other exercise on top. So I would go to boxing classes after the running, each boxing session would start with 20-30min of rope skipping. Unknowingly I was planting the seeds that would result in the biggest disaster of my life. You might shake your head at my now, and I shake my head at that person I was, but I did what I did.
Part 2
ReplyDelete2.5 years ago, my right knee, one day and without any warning sign (and really, there was none as far as I remember and I am a very body-sensitive person) got a bit swollen posteriorly (back of the knee). It wasn’t painful, just annoying and I thought, ok, I really overdid it and this is the time to at least for now stop these mad exercises. I am not the type of person who ignores body warning signs. I never push through pain and am a bit of a weakling when it comes to handling pain. I also (at least I thought so) know my body well. So I stopped, did the usual thing for 1-2 weeks. Rest, ice, creams, etc. Condition stayed the same. Because I am not on medical aid and was and am a poor scientist/student I avoided doctors and went to a few sessions with a recommended PT (actually a good move so far). She examined my knee thoroughly, but her assessment was that there was nothing wrong with it. She said I should rest it, and although she did not mention articular cartilage could be the problem, she suggested to not do any exercises. She referred me to a conservative knee doctor/surgeon should the symptom not go away. I did not go to see the doctor then, but rested the knee (what I thought was resting). However, my injury was around August 2015 and at that time I had already planned and booked a backpacking/hiking trip through New Zealand with some friends for December. Interestingly, I managed to do the trip with relative ease. I was wearing a knee brace and was taping my knee (although I had no idea what I was doing as I had no idea of the injury, but intuitively probably got it right). We were carrying heavy backpacks, 15-20kg on daily walks of up to 15km over difficult terrain over 1.5 months. On interval hikes for 3-5 days. We were all biologists and photographers, so I was carrying my heavy gear. Ridiculous in retrospect. During the hiking I was relatively fine. The swelling came and went and the knee felt okish, so I thought well, its probably going to be OK. But it was not, in retrospect I just really wanted to go on that holiday as it meant the world to me after this horrible year. I needed that time with my friends.
Afterwards and back home my knee felt the same as before or slightly worse from what I recall now. I wasn’t monitoring it rigorously, and also, and this is one of my biggest “problem” in comparison to many others I believe, I never had “pain”, just a really ugly feeling of discomfort that something is not right. It was and is very very easy to push through it. So in February 2016 I went to the doctor my PT recommended. We did a MRI and found bad cartilage. He didn’t explain to me where the damage is though, and at that time I knew nothing about PFPS, chondromalacia, and also very little about the knee-joint. I thought for a very very long time that the cartilage was degenerated at the femur/tibia interface and not behind the patella. Because I did not have pain anteriorly I never googled or looked up PFPS even and also did not get diagnoses with it. After all the back of my knee was feeling weird, not the front! Doctor suggested I should do: Nothing. Great advice actually. He was of cause right, but he was still a horrible doctor because he gave absolutely zero suggestion or advice on what that actually meant.
Part 3
ReplyDeleteSo I did ‘nothing’, cut down all exercises but of cause kept my main daily things I had to do — I was in the middle of an intense PhD project I was so enthusiastic about, and this caused a lot of pressure too. The symptom stayed basically the same for over a year until I got desperate and made my worst decision. I saw the apparently knee-magician-god-doctor/surgeon in the country, the man who heals the national sports teams and so on. He said my cartilage has been bad for such a long time, it won’t heal unless we do something. Without it would only get worse, these were his words. Arthroscopy and cutting out the damaged cartilage with microfracture of the bone didn’t sound too invasive to me at the time. And idiot-me was at the edge of what I could take (so I thought). So I scheduled the thing for May 2017, financial pressure included. At that time I still had not even understood that the actual damage was actually behind the patella! I almost feel embarrassment thinking about this now. I am a biological scientist. I have a very good basic understanding of living organisms and processes. My scientific training though made me vulnerable to the dogma of scientific medicine, and also the doctors treated me as one of many unqualified patients instead of really looking at what was going on. They failed big times to enable me to understand my condition, which could have resulted in the right measures to heal myself. My part in this is that I am a rather shy person and that I did not ask all the right questions. But it is also very difficult to ask these questions in 5 min consultation with the doctor just running out as quickly as he can.
The actual arthroscopy went “well”, I had no pain whatsoever, hubbeled around on crutches for a time. I was hopeful, but disaster was just around the corner. Because I was standing only on my left foot now, my left knee started showing signs of the same symptoms as my right had. Very very subtle, but it got me thinking and scared. I went to the doctor saying I am worried, and he said I must get off the crutches. I didn’t trust my right operated knee, but for the first time after almost 2 years that knee was symptom free when I stood on it. It was amazing, I could basically walk normally. This was only 3 weeks post-surgery. At this time I had already been doing rehab biking on the special machines that move for you. One bike, called the “Grucox”, works in the way that you have to resist the rotating engine. However, in retrospect getting of the crutches after only 3 weeks was the worst idea ever. I asked the doctor how much I should walk etc. And he said: “Walk normally”, but I should continue with the rehab on the bikes. Readers of this blog already know what will follow now. The rehab and ‘normal’ activities pushed me straight into the rabbit whole. Because I still had no real pain, the PTs pushed up my program, increasing the force of the bikes. They had a weird scale of a pain threshold from 0-10, if the pain would be below 4 they said I must continue the 20min biking session. Because I was now in this “sports science” environment, I made friends with the PTs as I basically went there every or every second day for the bikes over weeks. They all wanted to help me and gave me the usual VMO-shit. You know the story. The cartilage regeneration from the micro fracture was worn off within days or a few weeks, and my left knee got damaged and at times felt worse than the right. Because I was feeling so horrible I went back to the doctor complaining, almost crying in his practise. He said I should stop the rehab biking, maybe keep biking in the gym though on a normal bike. It still never occurred to him to ask how much I would walk, and that in order to get to the gym/sports center in the first place, I had to do extra effort and even extra steps that I would not have done normally.
Part 4
ReplyDeleteThis odyssey went on until September last year. I was even stupid enough to still go to that gym regularly to do upper body stuff. People were constantly convincing me that I needed to do something otherwise my body will get weaker and weaker. And for the rehab I had signed a yearly student membership anyways because I anticipated it to be long. With the upper body stuff my knees also got worse and worse. After all I still had to go there, I would still do 10min of biking on zero force, just to keep the knees moving. And I would carry weights even when only for a few meters. After all, I managed to injure my elbow and now have lateral pain in this too. I think its cartilage as it produces similar crepitus. So then weights were out and I did gentle crunches and stuff. I thought there are no joints in my belly - I was wrong. My left hip now has some mild problems. And my left Achilles tendon is weirdly numb and strange too. I think because my calve muscles are constantly trying to overcompensate. But who the hell knows. Ask the ghost in the machine!
The surgeon doctor basically gave up on me. He said there is nothing he can do for me anymore. He said theres is not real mechanical reason why my knees are the way they are or could not heal. I think this was the first good thing he did, sending me off and not causing more damage. However, he sent me to a rheumatologist, sound familiar? Guess what, I do not have any inflammation markers for RA. I am perfectly healthy in most ways.
But this brought me to another doctor and he is good. Even if he also made my knees worse by putting braces on me (more to braces later), he did something important. He listened and encouraged me to find my own way through and out of this hell. We tried out the general knee braces and also hyloaronic acid injections after the braces didn’t really do much. I was also starting to wear the braces on different knees to see the difference. At this time, October-December last year (2017) I was at the absolute low point. Luckily, something good happened a few months ago. I submitted my PhD thesis and that pressure is gone for now, and I will be a doctor myself — and for the sake of it not a medical one. So I started doing my own research, read many scientific articles and also found Richards book by complete coincidence. I downloaded the thing one day at 9 pm onto my reader, and had read through it entirely by 8:30 am the next morning! Then I made a cup of tea and went to bed. (Don’t worry, I am usually a good sleeper and sleep at night. The one thing I still have it seems).
This is were I am at now. Over the past 1.5 months I have been trying to explore my envelope of function. I also read most of Scott Dyes papers. I started by 3000 steps and couldn’t maintain it. I regularly exceed 4000 steps and I figured out that my left knee is probably good with 3000 steps but my right (arthroscopy) is not good with 3000 and probably is nearer to 2000. I also got unbelievably frustrated at the fitness watch I bought, because this privacy-data-monster is programmed to encourage you to walk as much as you can and do as much exercise as possible. If there is a programmer out there, please develop a rehab app!!!
So, this is my story. I told you it was long and a repetition of all of you. Thanks for bearing with me. Here are some considerations, also what makes my knees worst.
My biggest “problem” is that I have absolutely no perceived pain despite being a very pain-sensitive person. I actually had a huge discussion with my current doc what pain actually is. I said I have extreme discomfort and a horrible feeling in my knees and he argued that extreme discomfort is pain. But I kind of disagree in a way and there doesn’t have to be a defined answer either. It just highlights the problem that I have to rely on other indicators and lern “knee-language”. I believe learning this language is absolute key.
Part 5
ReplyDeleteDespite lying on the couch my knees feel best when walking, but only a few hundred steps maximum at a time. Then pause.
They are worse when standing and feel immediately “full” after just washing 1-2 dishes etc., so I do 1-2 then go back to lie on my bed.
When I overuse my knees through whatever, there is a subtle and annoying burning mostly at night, but one that up until now I could easily draw my mind away from. That burning is gone after a good night sleep.
I also read TriAgains story, and I have the same thing that my knees get freezing cold and that is mostly when they are bend. Sitting for 5 min and the knee-caps, and only the knee-caps!, get like ice. I need to get up, prop my legs up an wrap them in a blanket even with 30°C outside to get rid of this. I am trying to figure out if my body wants them to be cold though. I don’t know. Actually, hot days are the worse. Cold days are much better. I think this is because I grew up in a cold climate and my body is conditioned to that. My physiology does not work as well when its warm, so in an injury/chronic disease a joint that is out of homeostasis anyways will suffer quickly?
Alcohol is the worst, not because of the alcohol I believe, but I drink one beer or a glas of wine and my symptoms are gone. Its also extremely tempting… I can walk almost normally, but that doesn’t mean that my joints are any stronger or walking would do them better. Doing so sets me back weeks.
I think the same is the story with the braces. They increase the muscle tonus and by that increase the pressure of the surrounding tissue, which pushes back the slightly increased pressure in synovial fluid that causes my subtle symptoms of fullness. Putting on braces and that feeling is gone. My knees feel relatively normal and I can walk 5-8,000 steps. But I pay for it the next days and over time it kills the joints. Symptoms are always 2-3 days delayed so it took time to figure this out.
I need to mention that I have been following a rigorous diet and reduced all things that are known to flare up inflammation while maintaining things that are needed for cartilage growth. However, I am not even sure how important the diet is really in my case. Although its seems like its starting to get worse, I have always had very little inflammation in my body because otherwise I would have stronger symptoms.
Another problem is that my two knees are both almost the same, but also very different at the same time. I now think that cutting out that damaged cartilage was a really a bad decision. I am repeating the consensus of this forum to not cut open your knees unless it is really (and I mean really!) needed.
The hyluaronic acid injections — I don’t know. The effect varies in me. Sometimes my knees feel great afterwards for a few days. But then the effect worsens. I got them cheap through a medical friend off the internet and actually still have 4 of them lying in my fridge, and my doctor has agreed to give them to me without a consultation charge. Because I am poor and he is great. But honestly, I think its time to give my knees what they need — time and the right environment to heal. There are no shortcuts.
Part 6
ReplyDeleteOne thing I would be really interested to hear from people here is if they feel/felt stuck in life when their knees are/were the worst or got injured. Obviously this a difficult feedback situation as bad knees really do make you feel stuck. But what if the knees are a cause of the initial situation and heal once the initial situation is eliminated? My bad knees were caused by a break-up, so I read with more interest when Richard wrote that he got married and his children were underway, and that seemed to coincide with his knees getting much better. A few posts touched on this, but not in great detail. And of cause these things are or can be very personal. I just see the connection in me, and I healing these knees for me also means healing from the break-up even when it lies years ago. Maybe something to elaborate on because I think that these emotional things are way more important in the human body than science will ever be able to prove it.
Well, so much to me. Its a crazy journey and I want to encourage everyone to stay positive. It’s really difficult, maybe worse that bad knees to have a clouded state of mind. But I think I have a similarly analytical skill set to many people here including Richard, so analysing every bit of the condition is what is my path. And it helps to stay positive.
Blessings to everyone,
Jannes
What a story, Jannes! Thanks for sharing. So many elements are familiar to me, and other readers here (but apparently, not so much to doctors ... hmm). Just one element I wanted to be clear on: my getting married and having a child I don't think was related to my knees getting better; the events just happened to coincide on the timeline, I think. But it is true that stress can increase knee pain certainly, and so if you can get yourself in a better frame of mind, that should help. Best!
DeleteHi mate, I agree with a lot of what you're saying. I have also had microfracture on my patella in May last year. My surgeon never discussed this with me and just did it when it there to trim the plica. Anyway a year later and yes I keep getting that "full" feeling right through the knee. It's horrible. Like you say - worst decision of my life. Surgeon keeps saying rebuild the quad, push through the pain but that's not working.
DeleteI've just signed up with an ortho bionomy guy. Not keen at all on surgery again.
Yes I think I can trace the original pain back to a stressful time in my life. Which slowly brought on my pain. In hindsight I should have spent atleast 2 years trying natural remedies. Instead I chose the "non invasive arthroscopy" to "fix the problem".
All we can do is maintain hope and continue to search until we find a cure for our pain. Best wishes.
P.s I'm a 32 yo soldier and was highly active before this surgery so my goal is to get back to full training everyday!
I engage in regular exercise and am very conscious of my knees. My Pilates instructor always introduces exercises that are 'good for people with bad knees' and shoudln't hurt. I can't do a single one without pain, so I no longer try.
ReplyDeleteI've also been told that the stepper is very good for people with bad knees. Nope - not me.
I do have a limit on the treadmill (brisk walking) in that if I "overdo" it, my knees will have issues (not pain per se). Unfortunately, I can't accurately determine what "overdoing" it is. I think it varies.
Dear Jannes,
ReplyDeleteSorry about your suffering.
Just want to tell you I have found traces that suggest my break up with a beloved one heavily influenced the trigger of my misery and the healing afterwards. However, it is too personal to go into details here. Also, that was only a part and not the whole story.
Also want to add that I am sure that, in general, inflammatory markers that are okay does not mean it is certain one does not have inflammation.
Good luck,
S.
Sounds like classic Dr Dye synovitis/loss of tissue homeostasis to me Jannes, and classic medical ignorance (negligence almost!). Like most of us, you'll probably have to plot your own path to recovery through trial & error over a long period. I found when my knees were at their worst, I could not figure out what made them better or worse, it was just turmoil with no rhyme or reason. Now that they are much improved, it is much easier to figure things out. Strange that you did not have any real pain though. I definitely had constant aching/burning. I do recall talking to another runner who I think was on the brink of PFPS and he said his knees felt like they had tight bandages wrapped around them. But it seems they never progressed to the dire situation of mine. Then he got heart problems!
ReplyDeleteAll the best.
I can relate to the feeling of tightness in the knees. Although over time they only felt tight when bending around 90 degrees. I also felt no "pain" in my knees. Only a mild discomfort anytime I sat down or at night while trying to sleep. Keeping a pillow below the knees to prop them up a bit was good for them. I cannot emphasise how important it is to keep a healthy attitude towards healing. That is probably the hardest thing I had to figure out. Best of luck with everything Jannes.
ReplyDeleteHi everyone,
ReplyDeleteThis is Elly, posting another update. I'm now 6.5 months from the first day I started to truly Rest (yes I capitalized it), and about 8 months from when I experienced the first burning pains (although I didn't know what they were at the time...and it wasn't that bad in teh beginning, so I stupidly pushed through the pain, which of course got worse and eventually landed me in a completely debilitated state).
So where am I now at 6.5 months? I'm doing better. As long as my life does not involve stairs/squatting/running/lunging/jumping, I can do most "normal day to day" things. Although I am still crushed that I cannot participate in an active lifestyle, I am glad to be able to walk more than two blocks on flat ground. At my worst, I could not even stand without aid (also couldn't sit with knees bent...which is a HUGE inconvenience...also couldn't sleep at night because burning knees). So being able to walk normally (not hobbled, bent over, slow shuffling gait) for 6000-8000 steps in a day, is a vast improvement (even though it feels like it took forever to get here).
I can now sleep through the night without waking up due to knee pain. I can walk very small elevations, stretched over a considerable distance. On a good day, I can walk briskly (flat ground only) and show no outward appearance of a disability. I can sit with knees bent for a couple hours without pain.
Although there's still much I can't do, I AM getting better. The hardest part now (well, as it has always been), is patience. On my good days, I tend to get excited and attempt a flight of stairs. I did that 2 weeks ago, 10 steps going up, without using the handrails (when I use the handrails, I've noticed my knees tolerate 10 steps well...so I thought to try without rails...the load difference must have been too much). This resulted in a several day flare up of burning, aching pain (again). So whenever that happens, I just take it really easy until the flare subsides. Then I try to push my EoF a little further, again. Instead of 10 steps without handrails, I'll try 20 steps with handrails. I was also looking at the total body machine Doug Kelsey mentions, but I haven't anywhere to put it for now.
Hello Elly, thanks for posting your experience with synovitis It's very inspiring.What specifically did you do to REST ? Can you give some details about what you did to get better ? Thanks, Ileana
DeleteThe machine folds up and stands upright. It doesn’t take up much space and fits in a closet when folded.
DeleteHopefully, for everyone else who is suffering this gives them hope. I feel lucky that I did not encounter any doctors who pushed surgery--no one did. If they had, I would have agreed, because the pain and despair was so bad.
ReplyDeleteThe only drug interventions I have had, to date, are the following:
- Medrol dose pak, 2 times
- Kenalog injections, each knee -- performed by Dr. Dye
- Piroxicam, 10 mg, once a day for 2 months
Honestly, the cortisone (kenalog) shots did nothing for me (as far as I could tell). It actually caused a flare-up (which can happen in up to 10% of patients). And, it caused me to have 2 periods in 1 month...I would NOT EVER do shots again. The Medrol helped dampen the pain by 30-50%, briefly. The Piroxicam, can't tell if it helped or not.
I also did PT with experienced therapists who listened to me and were very very gentle in our program. Actually, they were so good that they would tell me to slow down (when I felt good, I would say, yeah let's try some more! and they would say no that's enough for now, baby steps). Of course they were right. Every time I tried to push myself on my own, I paid for it. So my increments are too large. I just need to figure out "pushing more" to a much smaller degree.
Icing has been a huge relief for me. As well as a TENS unit (bought one for $30 on Amazon). I probably iced too much--they say to keep it to 20-30 minutes at a time, 2-3x a day. Too much icing can retard healing. Well, for months, I would just ice for hours until everything was good and numb. For me, when my knees get warm (shower, bath, under blankets), they get burning achy. These days, I don't need to ice for hours anymore. Doing 30 minutes 3x/day.
So, I don't know if 6.5 months is considered a long time or short time for healing. I know everyone is different. I'm still not 100%. Climbing 10 steps causes painful flareups that last for days (although no pain is felt at the time I'm doing it...good ol' delayed 6-24 hours cytokine action). Going DOWN steps causes immediate jabby pain. I am far from the lifetsyle I used to have. It depresses me even now to think about what I used to be able to do. Ah, but that's a killer--you must stop thinking about what you used to be able to do. Half a year ago, I would never have been able to climb even one step (with or without handrails). Now, I can do 10, with handrails.
I had major crepitus in my right knee as well. That has gone down by 95%. There used to be a movement where I could, 100% of the time, create the large patellar skip. Now that same movement, results in no skipping. So there is definitely some kind of healing action going on. Cartilage? Ligaments? Who knows.
Don't lose hope. Enjoy every day as much as you can. With chronic pain, you are in it for the long haul and there's no straight path out of the woods. I think a huge reason why it's difficult for prescribers, is that there is a huge variation in what works, and that programs need to be closely monitored and tracked. This is not financially possible in today's health care system. You still have to be your own health advocate.
I also bought one of those geriatric toilet seat lids with the handles. When I sit down/stand up, I notice that I'm able to rely on the handles less, than 2 months ago.
Endurance, patience, and careful progression with FULL REST whenever your knees tell you. I'm still not sure if I'll ever make it to 100%. But I have reframed my state of mind to accept that gains take months to years, and it is what it is.
Good luck everyone!
Elly, I think that it is very positive omen that the crepitus is gone (terrible synovial fluid?) and you do not have pattelar skips (enlarged synovium?). In hindsight, when those two symptoms were gone in my journey, it was the turning point in the battle and what followed was faster rate of healing. Be careful with the ice because too much not only slows down healing but also may cause damage to the myelin sheaths of your nerves And it may be hard for you to believe, but trust me - neurological pain is more scary than inflamed synovium. I found out that 20 minutes at a time is the optimum. Maybe you may want to consider doing it more often but for less time.
DeleteGood luck,
S.
Do not lose courage and hope of recovery even if it is slow and looks impossible!
That is an excellent post Elly, and mirrors my experiences very well....though I'm now 6yrs down the track, and 80-90% cured. I can do some pretty hard stuff on my knees (about to go out for a 1.5hr ride with friends), but they rarely feel 'normal', and can flare, though nothing as bad as they were & I know how to get it back under control within a few days now. Key points from your post which resonate with my experience are:
Delete- really resting (I failed mostly at this, which it why I don't have a Richard result yet)
- patience....you need soooooo much patience (fail again for me)
- icing yes, but not too much (no more than 1-2x/day for 15mins for me)
- TENS machine was a Godsend for me during really bad flares. I really only need it once every 3-6mths now
- Becoming your own health advocate. YES, YES, YES! After 2-3yrs I figured out the 'experts' were mostly guessing and locked into their 'pet treatment'. Through my own research, trial & error & finding Dr Dyes work, I mostly figured it out for myself.
- No straight path out of the woods. So true, and this is where the experts & patients both fail. Chronic synovial inflammation is an absolute mongrel of a thing to get on top of, but it can be done.
Like you, I'm not sure I'll get back to 100% - mostly due to my exercise addiction & inability to sit still for long - but if this is as good as it gets, I'll take it because it is way way better than at its worst.
Hi Triagain,
DeleteCould you explain how you used your TENS machine to help flares? Where you placed the little patches? I have one of those things I had forgotten about.
Heather, I put the patches on either side of my kneecap. on the lower half of the kneecap. So they are only a few centimeters apart.
DeleteI've had JRA since age 2 (I'm 47 now). I've never known a time my right knee didn't hurt, ache, felt weaker than other, etc. I hate my knee touched in any way. I just discovered Richard's book, and planning on trying a swimming, walking regiment like I've never done before. I have always tried to stay active, but this time with a commitment never done. I usually get in the pool twice a week and walk my dog down the road and back. I'm hoping to be able to improve my knee even slightly would give me a better quality of life.
ReplyDelete@Ileana: What specifically did you do to REST ?
ReplyDelete- sat on a L-section couch with legs extended all day. Iced knees. Treated my knees like they were made of frail glass. tried to have zero load on them. Used crutches and got around in wheelchair at the worst points. They were so bad they couldn't bear my weight standing. This went on for a good 2-3 months. Mentally, I was in full despair and contemplating suicide. Slept with ice too, because of the nonstop burning.
Can you give some details about what you did to get better ?
- yah i got a bunch of posts throughout this blog. i don't have a magical formula. but basically, the first 3 months, i was forced to rest a bunch, cried my eyes out, ate as healthy as i could (husband helped a lot here, i had zero appetite), and used a peddler for a minute here and there, just to have some low load movement in the knees. did PT exercises starting in the 3rd month, i think. saw great PTs who paced me really slowly. Clams/Bridges/sideways leg lifts/Thomas test hip flexor stretch/stationary bike/very gentle therapist massages aroudn knee fat pads/
@Sveto and TriAgain: good to hear from you two =) thank you for your input. will respond more later =) (gotta get ready for bed!)
Elly thank you so much for your detailed answer. My daughter had a synovectomy for PfS with Dr Dye about seven weeks ago. Her pain is starting to get better, but she can only walk about 1700 steps, and when she does physio she experiences pain (5/10) for several hours afterwards.
DeleteWas this your experience with physio? Did the pain from physio eventually go away completely ?
When you first starting walking a bit did you have any pain that eventually went away ?
thank you. we're worried about her. regards, Ileana
hi Ileana, I still have pain and have to tread carefully. progress is extremely slow. my personal experience with my PT was such that we were ok with say, level 3 one day, then try a baby step of a "more challenging" exercise (which was like...very small increments such as going from 10 heel raises to 15 or soemthign like taht). i went 3 times a week, spaced 1 day apart. kept everything else the same, so we could more easily dtermine waht worked for my knees and what didn't. if pain went up a notch, we were ok with that. but more than that, it was time to back off and take it easy for a week until i got to "baseline" pain level. it's like the stock market. up down up down but overall, a very small slope rise (taking a long time to heal). don't focus on number of steps. it's not going to be a linear increase. there will be many setbacks. healing is operating within the envelope of function and gently nudging that envelope at the same time. 7 weeks is nothing in the course of knee healing. i'ts best if one thinks in terms of months/years. if you don't listen to your body, and try to push too much too soon, you will regret it and just add to the amount of heal time, and lose all that careful slow progress (could be setback of weeks...i remember at one point, i had pushed too much, and set myself back 4 weeks). one thing you'll note is that everyone' recovery, while different, has the same thing in common: takes a really long time. so when i read that you are worrying "7 weeks and she can only walk 1700 steps"...i don't think that's a bad thing at all. but, of course, talk to your doctor about it too. when i first started walking, yes, it was painful. so i didn't do much of it. almost a year goes by, i can walk normally for the most part now, on flat ground. i'm not sure what you are expecting at 7 weeks--what does the doctor say? in my experience, i really just had to take the tiniest baby steps and geeeently nuuuudge those knees.
ReplyDeleteHey guys, I'm Deb I had a synoctomy with Dr. Dye 3 months ago. Still doing 1500 steps on one crutch as I am limited by pain, which always gets worse with physio.....anyone else been at such as low step count and so limited that recovered partially?
ReplyDeleteI didn’t have a synovectomy or any other surgery. Thankfully my orthopedic surgeon said PT was the only way to recover. At my worst (around November of last year) there was no such thing as walking without any pain. I probably did about 2,000 some days and some days less than 1,000. I would wake up at night and feel like someone was drilling into my kneecaps.
DeleteThis was after months of doing ineffective PT and things that I hadn’t accepted as making my knees worse.
The thing that seemed to help was the second round of PT (at the start) where I did pool excersises (not swimming). This really got me out of the worst of it.
Then I began to do the water excercise and regular PT. Including leg presses, excercise bike, and hamstring curls. I foolishly pushed through pain and either continued to recover because I rested so much when not at PT or because of it, I don’t know which. I wouldn’t recommend that route. Eventually I had a whole month with 0 progress and realized I was on the wrong path. The water excercises were great though.
It seems I’m now on the right path using a total trainer to do reduced load squats.
My life is nothing like it was a year ago before this nightmare started, but I have partially recovered from what I thought was a hopeless situation. I still have a long ways to go though.
Take it slow and accept where you are now. Don’t dwell on what you used to be able to do, but use it as motivation to keep moving forward.
You will get better.