ladysprite | State of the Knee, Round 3

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State of the Knee, Round 3

I made it back to the orthopedist today, and he poked my knee and bent it back and forth, and came to a pretty quick conclusion.

The good news is that he doesn't think it's a recurrence of the synovial plica, and that I don't need more surgery.

The bad news is that I'm developing arthritis, and that I'm pretty much stuck with it for the rest of my life. Oh, he made noises about how, if I feel like it, I can try taking glucosamine and anti-inflammatories and going to physical therapy, but he seemed to think that these were all pretty much just busy-work to make me feel like I'm doing something, and that he doesn't actually expect any of them to help. His final pronouncement was that the best I can hope for is to eventually reach a point where I have more good days than bad ones.

I suppose it could be worse, and I suppose I should be grateful that this is such a livable problem. But.... I'm not.

Damnit, I'm too young to have a permanent problem like this! I'm 32, not 82. I'm thin, I'm fairly muscular, I eat a healthy diet, I'm in an active job, and I exercise regularly. Isn't that supposed to keep you healthy? Isn't that supposed to protect you from crap like this?

I'm not ready to stop moving. I *like* walking, and dancing, and doing yoga, and climbing trees, and a whole host of other things. I'm not ready to just sit down and accept a life of pain and limited mobility. If I were 80, maybe I could swallow it without a problem, though I'm inclined to think that even then I'd be too damn stubborn to surrender quietly. But now? I've only just started my life, it's not fair to make me stop doing things already.

I know this is stupid of me, and that there are people out there with problems that are so much worse, and I'm being selfish and ungrateful, but I can't help it. I'm doing everything I can - I've started mainlining glucosamine, and I'm already taking as much Advil as I can handle, and I'm trying to get through to the physical therapist to make an appointment, but apparently even with all this it's not going to make much of a difference.

Not fair, not fair, not fair. I almost wish it *was* something surgical, because at least then I'd have a chance at getting better. Tomorrow I'll put on a happy face and have faith that I'll still manage what I call for my patients a Decent Quality of Life, but today I think I need a little time to wallow....

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Not to jump in too fast with a fixit, but have you considered talking to Mistress Catrin? She's been making huge progress with her arthritis through diet modulation - like 1000% improved. Between that and her jin sin jyutsu, I'd say she's a poster child for kicking the ass of arthritis.

All that said, you are totally right and it's not fair at all.

Diet? That's not something that I've heard about - thank you for the heads-up. Time to start doing research....

My sense is that she got a lot of the same bill of goods you got handed - oh, woe, nothing helps, suck it up until we give you steroids and surgery for minimal improvement. And she said, "screw that!" and went on an elimination diet, one food at a time, and figured out what helped and what really hurt. It probably won't be the exact same foods for you, but definitely give it some thought.

If you find something about this, would you be willing to post a link in your LJ? I've apparently inherited pretty serious arthritis myself (hence the neck surgery) and would love to find alternative methods of moderating it, too.

More generally, that sucks, probably even more than being diagnosed with arthritis at 41 (which is still suckily young, but at least there's a higher first digit). I suspect you'll find some way to continue to live and thrive and be active despite it, however!

I have heard that going vegan actually helps a lot with rheumatoid arthritis, though I can never remember if that's the kind my friends have or not. Scientific studies back me up!

Glucosamine does actually work quite well, as long as you take it early and take enough for your body weight (neither of which I did).

When it gets to the point of being unmanageable, knee replacement surgery is an option -- it's done wonders for me. But be warned, if you're under 50 they'll give you BS about being too young. Fight them. Tell them that you want the mobility now, not when you're 70. The surgery is also incredibly painful and the early days of recovery are not for wimps. However, if you do the PT religiously, you can end up with painless knees with 95% or better of normal range of motion.

I've heard good things about glucosamine, actually - and other things here or there, so I wouldn't give up on the moving thing just yet. You may just have to get active, research & try things to find what works for you, but there's a fair chance you can find something that will work for you & keep the arthritis manageable, perhaps even non-interfering under normal circumstances...

This does suck honey, and you have a right to complain about the fact that it does as often as you like.. because it does.

I think you should take some time to be upset, but also listen to the people above and likely the people below who will also echo them, I think the doctor is being too pessimistic about the treatments out there. Take some time to work through the frustration, and then go out there and figure out what you CAN do.

I have degenerative arthritis in both knees. I can't take glucosamine, because the supplement is always seafood based (oyster shells, etc.) and I'm allergic to fish... it gives me a nasty allergic reaction. However, in my experience, moderate (low-impact to knees, so running is right out) exercise helps more than rest. Keeping the weight off, which you have obviously done, is also helpful.

That's my experience anyway.

Actually,

ert's father is fatally allergic to shellfish, and we found him non-sealife-based glucosamine for Christmas last year. Not that he'll take it, as he's an eternal worrier, but I'll dig up where we got it and pass the info on if you like.

Oddly enough, I found and ordered some shortly after I posted. I am pretty psyched!

I'm a fan of the glucosamine. It made a huge difference in TidBit which led JMac and I to take it. He didn't think it helped until he quit taking it and realized that it made a huge difference.

I second

dreda's suggestion of talking with Catrin. Also, my grandfather is in his 80s with arthritis, and he's kicking it by doing swimming exercise a lot and taking the glucosamine chondritin. So there may be something to that.

*hugs*

Mmm...I would think that low-impact exercise (like yoga) is GOOD for arthritis.

Hugs.

Yeah, so would I. But the doctor specifically told me that I would probably never be able to do yoga again. He says that it might push the patella out of alignment.

This is probably the worst part for me. I've come to rely on yoga for the meditation and mental stability it provides - I feel like I'm being told that I have to choose between being sane and being able to walk...

I think you need a 2nd opinion there, because that sounds like errant bullshit to me. Exercise of a gentle nature is good for the body. You'd KNOW if you were pushing your patella out of alignment... no way you could miss that level of pain.

Working on it - the doctor was very fatalistic, and I let myself accept his mindset. But seeing all the advice here, I'm working on getting a second opinion from another doctor. If I can find someone who can 1) confirm the diagnosis and 2) actually work with me on a positive outlook and a plan for making this better, I'll feel a lot less dismal.

Thank you for making the suggestion....

Yes, I'm sure.

The diet bit above sounds promising too

I concur with

sjo -- get a second opinion, possibly from a physiatrist, rather than an orthopedist. It may be that you need to avoid or modify certain yoga poses, but I am not buying the idea that you need to give up yoga entirely.

Oh oh oh! Physiatrist! I whole heartedly agree and have two I can recommend. Both of the ones I have seen are dynamite and also are willing to entertain things like acupuncture.

He says that it might push the patella out of alignment.
Not every last yoga exercise under the sun. There might well be a few positions that you shouldn't get into at all and maybe a few more that you should only attempt with one of those neoprene knee braces to restrain the patella, but the rest of yoga should be fine.

Better to do the yoga you can do, and retain the meditation and mental stability, than do none at all.

Until your cartilage has degenerated to the point of being non-existent, there will always be things you can do. Swimming is excellent low impact exercise for the leg muscles. Strengthening them will help keep the patella aligned.

Don't, whatever you do, do what I did and resign yourself to being crippled for life. That way leads to despair. (and I'm still digging myself out of it 2+ years after the 2nd knee replacement.)

I could see where some specific movements and poses might be bad, but cutting out all yoga all together? That sounds honestly absurd to me. I hope you can get a second opinion from another doctor, and regardless talk to someone - maybe a physical therapist? - who can give you a realistic idea of which MOTIONS might be a bad idea. There's a fair amount of yoga that doesn't have to stress your knees at all, and if your doctor doesn't even consider that, he doesn't sound very useful to me.

Also, while I'm recommending people, I will put in the obligatory plug for Barry Meklir. Not so much for fixing as for talking to somebody who is a truly holistic bodyworker for ideas about how to help the rest of your body compensate for what is effectively a chronic injury, without throwing the rest of the body out of whack.

Second! He will be able to give you a realistic idea of if yoga can REALLY hurt or help.

Thirded!! He really knows his stuff and can do wonders for all sorts of musculo-skeletal problems.

...well, suck. *hugs*

I'd really encourage you to get a second opinion, though, because from all I've heard, arthritis is generally much more manageable than it sounds like this orthopedist was saying - and if yours is special in some particular way that keeps the usual things from helping, he should have explained how / why that is.

In addition to glucosamine chondroitin, there's fish oil for omega-3s - as that page says, the clinical studies regarding its assistance with arthritis are limited... but promising, and it's been shown to be good for you in other ways, so hey.

IIRC, there's also some prescription meds derived from hot oils? - if you remember Ellen B. from college, she had pretty bad arthritis of the hands (nasty for someone so heavily into computers / academic paper-writing); she had meds which I believe she took for the worse flare-ups or if she knew she was going to have to do a lot of typing.

I know this is stupid of me, and that there are people out there with problems that are so much worse, and I'm being selfish and ungrateful...

Hey, you've been threatened with having to cut something out of your life that you really enjoy and which does good things for your physical and mental health. Even if the underlying problem isn't life-threatening, that's in many ways a larger practical blow than a condition whose required lifestyle changes merely involve adding something to one's schedule ("do these exercises every day" or "take a month to recover from surgery" or whatnot).

Something else to consider is talking to a yoga instructor who's also a physical therapist or something about your situation; it might well be that you could simply avoid some small percentage of positions as involving too much strain, but continue with the other 80-95% of yoga?

I know this is stupid of me, and that there are people out there with problems that are so much worse, and I'm being selfish and ungrateful...

Horse hockey. When I was getting through early stages of recovery for brain surgery, people actually told me I should be grateful because there were people suffering in Iraq and at least I wasn't going through that.

Horse hockey. Again I say it unto you. Horse hockey! Pain *is* a solid cause for complaining when you need to. The threat of losing something you love *is* a solid cause for feeling miserable. And you are FAR too young to have to give up. Quality of life *IS* important, and anyone who tries to tell you otherwise deserves to have his kneecap broken and told the same about his own misery.

On a happier note, my 70+ year-old mother has arthritis in her back and legs. A year ago, we were afraid she would never walk without props again. Through a combination of physical therapy and tai-chi, she is doing MUCH better. What's even nicer is that she's getting some of her old self-confidence back. When she and my sister started doing the tai-chi together, Mom had to sit down through the entire thing. Six months or so later, she was able to stand up through the first 15 minutes or so of the half hour video.

On a practical level, I'm told that royal jelly is helpful. I'm also told that dairy can hurt. Since I haven't had to deal with arthritis, I can't tell you either of those things for certain, but they have been passed along to me, so I pass them along to you. I hope they help.

Good luck to you, Hon. You deserve the best.

My parents have arthritis. They take glucosamine every day and both think it helps a lot. Yes, more anecdotal evidence, but I hope it will help. And I would definitely seek a second opinion.

I'm really sorry. I know how much dancing brings you joy and I would just cry if you couldn't dance. But, I'm going to be positive and hope you get a more optimistic and helpful second opinion.

I'll just add some anecdotal stuff about yoga. My mother has bad knees (from years of teaching aerobics on concrete floors) and can't twist or torque them (I know that's not the same as arthritis). She does yoga all the time and it has helped a lot (as did acupuncture, believe it or not).

I'm sure someone has already suggested a consultation with Barry the Wonder Worker.

Oh, ow, hugs and sympathy, from someone who was told "it's arthritis, and there's nothing you can do about it" when I was still under 30. Turns out it's gout, and there is something can be done about it. ("Oh," they said, "but gout is a form of arthritis." Yeah, but it's a form that it turns out you can do something about.) So, not wishing to disrespect your orthopedist completely, but is it possible to look a little further, find out more about your particular arthritis? And even if it is essential and untreatable, look further into yoga: uninformed general intuition makes me think some form of it oughta help, and even if not, surely there's forms that don't hurt?

...and other sympathetic, supportive noises.

Gee, most of what I want to say has already been said by someone else :-)

I see you're working on getting a second opinion - that's great. My mom ended up with a doc that said "tincture of time" for a problem that (in hindsight) should have been treated fairly aggressively to prevent the degeneration that is now permanent. Oh, yeah, then the same doc said she wasn't "old enough" and "she'd have to learn to live with it". She's 64, dammit, not 80, she's _very_ active, and comes from a family background where she can reasonably expect to live into her 90's.

Nutritional supplements: you've seen how chondroitin sulfate and glucosamine work for arthritic dogs, right? And how fatty acid supplements work for inflammed skin? And how acupuncture helps make 'em more comfortable? And moderate exercise is a good thing?

What I'm saying is that it sounds like your doc isn't keeping up with current research :-) Talk with the yoga instructor, get a referral to a good physical therapist (maybe ask the yoga instructor or friends who do a lot of exercise for a recommendation, if the previous one didn't suit?). For your second opinion, try to get into someone who does sports medicine (the physiatist recommendation also sounds good). Check into acupuncture. Heck, I suspect I've told you about the patient with elbows so bad he had trouble walking, the orthopods at OSU said fusion or nothing, and after a couple of weeks of acupuncture, he was off jogging with the owner? Or the Akita who couldn't do steps at all, who went on for an additional 6 years or so with Adequan + Cosequin? (human version of Cosequin, BTW, is CosaminDS, and many pharmacies are carrying it OTC)

Tell all these folks what you've told us here - you're 32, and you don't intend to shrivel up and lie about, because you have living to do. And you'd like to keep your original parts (even the damaged bits) as long as you can, please :-)

Edited 2007-11-27 17:35 (UTC)

Something else that I have found helps is what they call parafin treatments. Messy, but it works for hours and sometimes longer.

Get large plastic tablecloth, and about a 3 inch decent paintbrush. Melt parafin on lowest possible heat and **Carefully** paint on knee, using thin layers. Much better thin layers than one or two thick ones, less chance of a burn.

Cod liver oil has helped me a good bit. Thankfully it comes in a pill form with no taste.

You can mix paraffin with mineral oil to lower the melting point and heat it in a crockpot.

Sucks to have bone anomalies... sigh...

I have been danncing for over twenty years you'd think it would help too, eh?

The back, hip and knee issues so suck but the worst suck is losing my eyesight gradually to the icky glaucoma crud... but that should be in another post..

I have been a participant in a really neat research study at one of the research hospitals in Boston on the use of Vitamin D to help assist in management and rebuilding of degenerative joint issues. Not that the research trials are done yet... but the vitamin D supplements really do seem to help. I am done with the initial phase of being a test bunny for them and now have a regular supply of daily dose Vitamin D... The vitamins and regular gentle mobility exercises keep things manageable for me with the two slipped discs in my back, the over extended pivotal hip pocket issue (curse the turnout from my ballet I guess :-)) and the arthritic knees.

I still dance... sure the first 10-15 minutes is a big challenging but once stuff gets warmed up it is better than sitting at a desk all day.

My big problem now is trying to find people to drive me to dancing or stuff at night as the eyesight has gone south enough that the driving thing is not allowed anymore... now time for my frustrating scream therapy... sigh.

If you want more info on the Vitamin D research just ask... I have lots of pointers.

*hugs*

The other "alternative" treatment that you might consider is Feldenkrais. The deal there is that there is not one way of doing things, but there is a way that works the best for your body at this time. I believe the man who developed it had knee problems, and (re-) taught himself to walk without pain.

Oh, oh, yes! Definitely worth looking into - I know a number of people (musicians, mostly) who thought they could never do the things they loved again because of degenerative or other kinds of chronic pain, and are back up and at it.

One of them, Josh Schreiber Shalem, is a wonderful viola de gambist who has started his own local practice in Arlington.

Whoa! I went to Bennington with Josh, back when it was a tiny 300-student village.

The world, she is very small. He really is a wonderful musician - his most obvious local group, Seven Times Salt, is playing a solstice concert on the 18th. Worth a look.

::hugs::

I can't add too much more to the current comments, although I'll chime in on the glucosamine, and on getting a second opinion.

My chiropractor recommends Cetagen for some forms of arthritis... it might be worth looking into.

::more hugs::

Well, that sucks -- go ahead and wallow. But also feel free to pursue a referral for a specialist or second opinion.

*hugs*

I've got problem knees too, and I'm really hoping it isn't arthritis. I don't think so, since they've been better since I've been climbing, which has strengthened the supporting leg muscles a bit.

I know this is stupid of me, and that there are people out there with problems that are so much worse, and I'm being selfish and ungrateful, but I can't help it.

Not stupid. Not selfish and ungrateful. ("I tell you three times.") (And I'm one of those people with worse problems, but y'know, those problems had a starting point, and there was, for me, that same anger/despair.)

Now that I've gotten that out of the way:

First of all, get another doctor. The whole "doctor roulette" thing is an incredible pain, but you've got to believe you're deserving of one who will work with you, not just issue Proclamations From On High.

Secondly, the glucosamine thing: A month or so ago both hips started giving me utter hell. Nothing comfortable, no position sitting or lying, don't even think about moving. I mentioned it to my doctor when I saw her a couple of weeks ago, and added that I'd switched from glucosamine/chondroitin to "glucosamine blend" about 6 weeks ago to save on costs. Her response was that studies have shown that it's the chondroitin that's most effective for arthritis. [And this from a non-naturopathic MD at a public health clinic. She's the reason I fuss with a ferry trip over to Seattle and the hellish parking there; no way I'm changing doctors when I've got one that understands fibro, CFS, migraines, arthritis, and the rest of the mix.]

[Best affordable source for supplements: Trader Joe's. IMO, YMMV, etc.]

So, I've been back on the g/c for a couple of weeks, noticing marginal improvement the last couple of days; it does take up to 6 weeks to kick in, I'm told. Also, anecdotal evidence of its effectivity; it took the conversation with the doctor to realize that's what changed, which, in my mind, eliminates placebo effect. Again, YMMV, etc.

Third thing, which I learned from my oldest aunt, who suffered badly from arthritis: Keep moving. Do not let it disable you. Figure out what you can do, then do it, in moderation. (I mentioned that to Jessica (my doc) and she just lit up, with this pleased expression, I suppose that she wasn't going to have to argue with someone's instinctive response of "pain=don't move." Did I mention that she's great?)

Edited 2007-11-27 22:39 (UTC)

I can only offer sympathy and second all the good suggestions that have been made.

Our sympathies. We both have arthritic knees which are usually OK but certain days/weather are much worse than others. (I've been taking staircases one stair at a time since Thanksgiving. Bleah.) Hopefully you can find which specific movements aggravate it and work around them.

Good thoughts on the knees. I'll also chime in on the glucosamine. Another option that helped me quite a bit (gave me three totally pain-free years) was hyalgan injections in the knee. The injections replace/supplement the synovial fluid in the joint and really help with cartilage problems.

http://www.hyalgan.com/

http://en.wikipedia.org/wiki/Synovial_fluid

I hope that you find something that works for you.

Hugs and sympathy -- I've been taking the glucosamine supplements religiously for the past couple of years, since I started showing symptoms in my knees. (With osteoarthritis on one side of the family and severe rheumatoid on the other, I always figured the odds were against me.) It seems to be helping: I've gone from frequent bad days to rare ones. Note that Costco's house brand of glucosamine-condroitin (Kirkland Signature) is accounted to be the best deal: a good price, and more consistent levels of the effective ingredients than most brands.

And I've heard a fair amount of evidence that the diet thing does matter a lot in some cases. I gather that some food allergies mainly wind up causing inflammation that can lead to painful arthritis, and that removing the cause of the inflammation helps a lot. I haven't dug into this deeply, since my own case is relatively mild, but it does seem to have made a huge difference for Catrin...

I don't have a properly aligned left wrist, post break, and my consultant recommended the glucosamine/chondritin combo as slowing the excess wear. "Not properly clinical trialed", but he believed it helped.

And check the active ingredient levels. They vary wildly between brands.

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State of the Knee, Round 3

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Hugs with some other research I know of...

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Mostly repeating what everyone else seems to have already covered, but...

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