I have not seen much detail on setbacks in the book and here. You and others mention them, but I am always hungry for more detail to help manage my expectations (do they last days or weeks for others? What works when they happen? etc.) I wonder if another Open Comment Forum on this topic would be useful at some point.Yes, setbacks are incredibly frustrating for someone working to rehab bad knees: you're slowly getting better, getting better, getting better ... then all of a sudden, you slide backwards. Healing then becomes something like a cruel mirage. Will you ever be pain-free?
So, below, I invite all of you out there to discuss setbacks. It would be especially useful to hear from those people who successfully battled through them: How frequently did you find yourself dealing with setbacks, how long did they last, what did you find was the best approach to overcoming them (regarding state of mind, reduction in movement, etc.)? What caused your setback in the first place (if you know)?
Or, again, feel free to talk about whatever. Open comment forum! I'm out!
I have been struggling with bilateral PFPS since 9 months.
ReplyDeleteI stopped running completely since then, and focused on the usual PT stuff that 99% of the medical professionals prescribe, i.e. quads strengthening, stretching etc.
I have to say that initially I felt an improvement in my condition. Then I added glutes and balance exercises, and these helped more than the quads one. In my case actually I have constant pain all-day long, but it is worse when I am sitting and resting, even with legs extended, or standing for a while. It seems that immobility makes it worse. I have most of the time burning pain on the medial side around the kneecap, some other times is a more "bony" deep ache. But if I walk for a bit (not too much of course), then the pain is relieved.
This is actually very deceiving and I cannot find my envelope of function.
Does anyone of you had this pain pattern?
In April, I was feeling good and I decided to try a short hill walk.
That was a mistake. The day after, the burning pain came back. Furthermore, three weeks ago I was at the airport and had to run to the gate to catch a flight which was closing. It was barely 200m or so, but this episode aggravated my PFPS and since then the pain has not lessened.
I now feel I am back to square one and thrashed months of work and progress. It is very depressing and my mood is at its lowest. I am hopeless and I don't know how to cope with this. Most of the time I am catastrophizing and thinking that I will end up with severe disability, like some horror stories than can be found on the Internet.
Besides, I am supposed to start a new job in two months and move from the UK to the USA. This big move, that once was my dream and for which I devoted a lot of effort in the past years, is now scaring me.
Hi Mante
DeleteYes, all of that rings a bell. At one stage I was so sick of the constant burning/ache I started to wonder if dual amputation would make my life better. I too thought I was going to be disabled for life with chronic pain. It is a long road (6yrs for me now, 5yrs before I really started to make real progress), but I've come out the other side, even doing a little MTB racing and thinking I can do some short triathlons again next season. Hang in there. 9mths in the PFPS world is not very long. Finding a way to conquer the chronic synovial inflammation is the key, but the way to do that seems to vary from person to person.
For me, Celebrex was the key to get on top of the inflammation, followed by gym work to strengthen hips/glutes/quads/back/core etc. muscles once I could handle it, then a gradual return to cycling & now a little running (though running is still suspect for my post-surgery knee cartilage, so I have to really limit it).
It really does make one fearful for the future, but know that as bad as it feels now, it can get better.
Mante, are you Adamas over on Knee Guru?
DeleteMy setbacks often come from the emotional side of it. To go from being a fit and healthy 20-something to unable to climb stairs is sometimes unbearable. I try to work out what I did wrong. To overcome it, I remember where I was a few months ago and I try to convince myself I am healing....even if I can’t feel it.
ReplyDeleteThanks for the blog Richard - it’s been my lifeline for over a year!
Hi Richard, as bad is this may sound I'd like to have a setback as this would mean I would have been progressing! Anyway I'm looking as visiting Dr Dye for my patellofemoral pain. 90%of the pain is from surgery I had a year ago. Through your studies - is there another specialist you would recommend seeing over Dye?
ReplyDeleteWell, I wouldn't advise seeing any of the ones I saw. No, seriously, I don't have a great knowledge of who's out there practicing and what they believe in. Dye has the smartest take on patellofemoral pain that I know of, by a long shot, but that doesn't mean there isn't someone else out there who might be even better. Perhaps another reader has a suggestion?
DeleteHi Richard and everybody! It's my one year anniversary of my debilitating injury to both of my knees! I just read about a set-back I had in October of last year that read like it was painful, but I'm here to celebrate and give credit where it is due! Richard, I know I'm not the only one, but we thank you greatly! Anytime I see someone suffering in knee pain I tell them about your blog and what a Godsend it was for me and that they need to read your blog and your book and get back on the road to recovery!
ReplyDeleteLast night my wife and I were pulling out of the IMAX movie theatre and saw (Han) Solo in 3D and we noticed a stranded motorist in a busy intersection at about 9:30. A year ago, my suv was the stranded car that we towed to the car dealer and then tried to push into a parking spot and that's when all hell broke loose in my knees.
A year later, the same thing, I knew I wanted to help, but also knew I could not do it by myself. Right about the time when I was giving up a guy in a monster truck pulls up and jumps out looking fit. I plead with him to help me help the lady out there stuck in traffic! He says OK and we get close to the car and it was a Dude, like a twelve year old Dude! So Monster Truck Guy and I push this small suv up to the gas pump of the nearby gas station, but again there was an incline and boy were those last few feet hard, but we got it done! Monster Truck Guy and I say our Goodbyes and he says, "I need a beer!" As I'm walking back to my wife I'm trying to assess and get my inner medical detective on full blast to see if I had re-injured myself and no! I could barely catch my breath, but my knees are good! In fact on Saturday I did a 40 miler on the road bike, no pain, in a little over three hours and I'm going to go ride the mountain bike for a little bit! Remember someone who sacrificed it all today!
Great story! Thanks for coming by, Bobster.
DeleteI'm still in the midst of it. Recent flare ups due to pushing a flatbed cart at Home Depot for a short distance across the parking lot. Last two days flared for reasons I can't figure out, other than the weather (Humid, low pressure system came through named Alberto). I had been doing a little better. Its so hard to be essentially disabled. I'm on three meds that should help with pain, so now when I flare them I have to wonder is my knee even worse than I think?
ReplyDeleteI think its harder when you can't figure out why you flared them. With the Home Depot flatbed cart... I just wont do that again. Easy. No problem. But today, I just don't know what did it. My core routine has been fine a number of times so I don't think that was it. The only new thing I tried was 10 calf raises. I wont be doing that again anytime soon now but I am not convinced that was the cause. (next time, I will try just one leg... as a science experiment. But that is not going to be anytime soon).
ReplyDeleteA few months ago I posted my crazy story in a (maybe too) detailed post. There were ups and downs since, while so far the ups are usually short-lived. I can definitely relate to the setbacks having a strong emotional component. I am currently working almost more on my mind than on my knees, because I realised that I hardly feel my knees being bad when I am in a happy space. I have reasons to think that its predominantly this way round - but it also doesnt matter.
ReplyDeletePhysically, I still have little idea what exercise my knees like except sleeping and watching movies while lying in bed. Ive tried walking on crutches for over a month, reducing the load and increasing the repetition, but that didnt really do much. I am also vary of being on crutches for too long since I have lots of other nasty systems too and don’t want to make things worse. I am now exclusively using them for stairs.
Then I did something fatal. I bought a tiny little “bike”, which are simply a pair of pedals on a little frame. Over the day I started with about 5 min/h of slowest movement without any resistance, which caused the worst set-back ever. After 3 days on this pedal device I was lying in bed wanting to shoot myself. It took me a week to get out of that misery, then slowly started my walking regime again building it up to 2-3000 steps a day. Slowest walking seems to be the only thing thats kind of good for me. About a month after that “biking-incident” I am now back to where I was before it, but I feel unstable still with more variation between the days than before. Last week I did have 1-2 days where I thought my knees were getting closer to healing. So in conclusion, I probably lost a month, maybe more because of something I tried out with that biking device. My advice for others is to be massively and overly careful with biking. I thought I was, but I had to learn the hard way.
In many ways the setback was important though and I am kind of grateful for it. It pushed me to dig even deeper in my psyche, really, and I mean really, working on my attitude towards life. I am proud I got out of that space and feel much stronger now mentally. The last weeks have been great despite my knees being often really shit. I also think I laid better foundations for healing now by really asking my family and friends for help, which before I had only done half-heartedly and so I wasnt truly heard. Because I look perfectly normal and healthy from the outside, I often have the problem that people don’t realise how bad my condition actually is. Its probably something many of you can relate to… I caught myself carrying the crutches around for that reason, to get parking at the disabled spaces, or people making space for me in public like on a bench I really need to sit because I walked too much. Its silly, but it can help sometimes.
The setback also pushed me to getting some more medical insights. I am done asking doctors for “help”, but I see the value of tapping into their expertise to add to my own knowledge. In that I now found out that I am hyperflexible, which I had always been aware of, but I didn’t know that it was a real medical term and condition that can lead to problems like I have. In flexibility my joints are not as protected by the surrounding tissue. I should never stretch, never do yoga, never do any high-impact sports or weights. Never ever. I did a lot of stretching and yoga when I injured myself with lots of running… Hyperflexibility is something doctors should have diagnosed me for a long time ago, as it has major implications on what exercises one should do! I am glad I know this now. Its another little piece in the puzzle. So in short, as horrible as my last setback was, I am much more positive now.
I hope I will see you on the healing side when I will write my next entry in a couple of months from now.
Cheers,
Jannes
Fascinating update, Jannes. Yes, please keep us updated. It's a really good group here, and I think a lot of people are quite interested in your story.
DeleteI am into 16th month of my knee pain. I don't know if I am recovering or not but yes situations have worsened lot of times. Since last 6 months I have tried my best to find the matrix of my knees but whatever movement is done, works against the recovery. I've noticed that even a walk of 1000 steps a day is getting harder for my knees to handle.
ReplyDeleteI tried gliding excercise on my glass table with a smooth silk cloth which hardly allows any friction. During those days I would hardly walk 500 steps throughout the day.
I've noticed that movements are just making my knees swollen.
According to my recent ayurvedic doctor, I've pain because of synovitis. So any movement will just increase the friction and will damage it more. He recommended me to wait until the swelling completely goes but it just doesn't. Slightest movements are giving me minor swelling at the downward side of knee cap.
Now if anyone of you can answer this question I'll be glad:
After an unpredictable knee use i.e. using a flight of stairs to go to 1st floor or just some more walking, I experience more rubbing of my knees.
So I have been trying to find the answer to this:
Are my knees rubbing because of the damaged cartilage or
Are they rubbing because of the synovial fluid not giving the lubrication they need?
Also for some more hints; they only rub more after an unscheduled use.
I would like to mention more details if I get a response. Thank you Richard sir :)
I started struggling with this problem about two months ago. I had extreme symptoms, barely able to sit with knees bent, I had the ol' cardboard box under the desk to prop up my legs for about a month. My commute to work was horrible. I take the subway and used to walk about 1.5 miles the rest of the way but had to start taking the bus. On days when I couldn't get a seat the standing still was horrible. And if I was seated I would stick my legs out into the aisle- a big no no in NYC.
ReplyDeleteAnyway, I finally got an appointment with my rehab medicine doctor. He told me keep going to work, blah blah, it's all fine.
It was not fine. After two more weeks I was limping around. I started physical therapy- my knee pain was about a 4 upon waking with a 7-8 in the evening. Very gentle physical therapy was going ok I guess. Two weeks later I had corticosteroid injections. Horrible corticosteroid flare! Totally immobile for 3 days. Physical therapy soon after. That totally crippled me and here I am today....
What I'm wondering is can I just go take a month long vacation in Nicaragua and sit by my favorite crater lake? I feel like from what I've read the physical therapy is just too much. All of the things they can do there I can do myself without the added pressure of somebody pushing me to destroy any progress I've made.
Has anybody really tried rest for a good long time? Like a month? With maybe gentle walking or swimming to keep the knee moving of course. It seems like physical therapy is not working for so many of us...
Sorry for the uncontrolled kind of off topic ramble- UGH. Just want to avoid more setbacks. I'm totally willing to cut down my physical activity in a serious way if that's what will really help.
Hello everyone,
ReplyDeleteThis post just came when I needed it!
I had synovectomy two months ago after a couple of years of excruciating inabilitating pain.
I felt released almost from day one, they took my plica out as the doctor found that it had been left under the patella and the femur, creating inflammation.
After a month with 2,then 1 crutch, I improved my walking and was able to do some steps and walk mild hills.
The thing is that it was still sensitive in the inner side of the patella, but I have just had one crisis and it is taking longer than usual,almmost a week so far.
I was thinking about going for a corticoid shot-
It is a very intense irradiating pain -my neck and jaw get tense from the pain and I feel really weak, so it is really as a nerve pain.
I wonder why this kind of nerve pain, if... my plica was removed?
is it still normal to have this pain even if the plica was removed?
My Doctor is away all week so I am really lost...
Thank you so much in advance!
Any inputs will be appreciated
Hi everyone , I’m unfortunately new to this pain. Just a month. But damn, you all are scaring me that I’ll maybe feel like this forever. I’m 29 and active. I hurt my knee in a basketball game and it never healed. I rested it, it got better, then would go out and do something active on it (couldn’t run, more like hiking or yoga) and would reinjure it again and again for 3 months. Finally, after a walk and two doses of yoga, it flared to a point where I am now (5-7/10 burning pain at all times in the knee; standing, sitting, lying in bed, etc.). It’s been a month post the big flare up, thankfully I live near Dr Dye in SF so I’ve begun seeing him (he thinks he can help but I’m an Uber skeptic of any doctors, mentally I’ve also convinced myself there’s little hope). I’m on crutches now but I’m seeing no sight of any envelope of function (ie. I have pain all day, from when I wake to when I go to bed no matter what I do, even if I rest it up all day, pain is burning at rest and sharpish when I walk around, which is nearly never now).
ReplyDeleteSo my questions!
1) Does anyone have any evidence of someone in my position, someone with NO envelope of function (meaning intense pain at all times, no matter what they do) recover from this? Even a little?
2) Dr Dye said that if I wasn’t getting better in the next 6 months he’d potentially go in arthoscopically and cut out inflamed synovial cells. Has anyone had this surgery? Any evidence it works?
3) Do I stand a better chance as a younger person?
4) Anyone live in SF? I need a hug in a big way.
5) Has anyone who’s had this chronically for a long time been able to build a happy life? Obviously one with struggle and strife, but one where you could make it out the other end mentally and get yourself out of bed every morning? One where you maintained a stable job and just learned to live with it?
6) Would a TKR help me?
Thanks,
Ben
Hi everyone,
ReplyDeleteI've got posts sprinkled throughout this website, and thought I'd post another update. Hopefully it helps. I'm seeing patient-specific questions, and I think that no one has the right answer for each person, because each case is different. But what I've noticed and read so far, is that chronic synovitis is a very long careful road to recovery...and you must stay within the EoF.
So, I'm about month 11 on this hellish journey. I've been doing pretty good, actually, in terms of normal daily living. Was able to walk over 10k steps at Universal Studios, no problem. Unfortunately, this resulted in a wave of confidence and (yet again), put me in another setback since I attempted to do a 2 mile hilly walk. I've been sticking to flat ground or short distances of hills, and for this jaunt, I had been enjoying myself so much that I forgot to keep track of what I was doing.
The knee-pain-lag thing (thanks to cytokines needing 6-24 hours to build up before telling your brain heeeeyyy you shouldn't have done that) really makes the whole EoF a challenge and figuring out what happened (although in this case, it was pretty easy to pinpoint).
Still, there's a silver lining with everything, and the pain is not nearly as bad as it would have been, had I attempted the same walk 2 months ago.
I was not happy for a long time, but the worst is over. I still can't do stairs/squat/run/jump/kneel, but being able to get around on my 2 feet most of the time, is a huge relief. I used to enjoy an active lifestyle, so this condition hit me (as it does everyone else) really hard.
So right now, in a setback, tolerable burning that comes and goes. Means I'll have to take it easy for a couple weeks, and then I can try to do a little more next time. The setbacks are tough. Because if you're doing everything you're supposed to be doing, you'll start gradually doing a little more and then not be as cautious because you start feeling good.
At my worst, I cried when I woke up, I cried at night, I cried all day, i thought about suicide, i thought about being disabled for the rest of my life and felt like just giving up. But reading about other people's experiences really helped to let me know I was not alone...and that if you take care of yourself and let your body heal, and truly accept this is a condition that takes years to recover from...you will get better. Good luck, everyone.
PS. I saw Dr. Dye. He's genuinely passionate about knees and his work. I had seen several other doctors before him, but he was the only one able to give me a specific diagnosis of chronic synovitis, not just "chondromalacia patella" or "pfps".