I've been diagnosed with arthritis. What's in store for me?

Miscellaneous and Personal Stuff I Must Share
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Yesterday I saw the doctor, after almost a month of knee pain, and he confirmed one of my worst fears, arthritis.

Both of my knees are structurally deformed, and 5 surgeries did not do too much to help them. But now the right knee is going downhill. He said he could see “a ton” of arthritis there.

He said my knee was so structurally messed up that the surgeons who did my 5 surgeries had to try to make chicken salad from chicken droppings – there was just nothing to work with. Nice, eh?

He prescribed physical therapy for the knee muscles because of the deformity, and then anti-inflamatory medicine and some pain medicine too for the arthritis. But I was so shocked and upset that I forgot to ask some questions – maybe you all can help?

Is there anything I can do to slow down the progress of the arthritis? Supplements or something?

Besides the therapy, should I try to not use the knee as much? The only sort of things I do are walking, household things, taking care of my fish, cats, and guinea pigs, shopping occasionally, things like that.

Please advise.

Bethany, with the chicken-doo knees

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Can you look into joint replacement? I knew a woman whose husband had severe arthritis, and he had just about everything replaced. She called him the Six Million Dollar Man. Insurance covers it. I know the pain is virtually non-existent once the surgery is done.

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Bethany - I was born with bad knees but never really started to notice anything was seriously amiss until I was into my early teens. After numerous arthroscopies and x-rays it was determined that I have bilateral patellar dislocation due to a deformity in the shape of my kneecaps. This means that my knees will dislocate themselves with very little effort and the pain has been constant for several decades now.

Arthritis also runs in my family and over the past couple of years the pain in my knees has also moved into my hips and ankles. My grandfather had 8 hip surgeries between the ages of 65 and 85 and passed away soon after having his 9th surgery at the age of 87.

Physical therapy is important to maintain strength in the affected joint and painkillers and anti-inflammatories can reduce the pain. Not doing anything is the worst thing to do as you want to maintain good muscles tone around the affected joints as that strength provides stability.

At one time I participated in a large number of sports such as hockey, volleyball, running, karate, swimming, cycling and weight lifting despite the physical cost and over the years the list of things I do has gotten shorter. I could still do them but the consequences usually outweigh the benefits.

I coach track and field for Special Olympics and ran (jogged) a few laps around the track last night… I can hardly move without intense pain today and won’t be going anywhere today without my cane and an added dose of painkillers.

I think my sports addiction, a masochistic streak, and a freakishly high tolerance for pain has kept me rolling as long as I have but the day when I seriously consider joint replacement is getting closer and closer.

I still have way to much to do like chasing my kids and my wife which I think is the same reason my grandfather kept walking and working when people told him to stop.

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I had ACL replacement surgery on my left knee about 5 years ago. They also found evidence of arthritis at the time of the 'scope. My knee is now much more stable and somewhat less painful than before the surgery. I also have a good bit of pain in my left hip joint that I suspect may be arthritis.

First, ask your doctor what exercises would be good. There are a good many (e.g., straight knee leg raises) that are prescribed after knee surgery that would probably help.

Second, unless the doctor says to, DON’T stop exercising. You may have to change the KINDS of exercise you do, however. My joints feel much better if I regularly do low-impact stuff like stationary bicycle riding* or slow, easy walking. Start small and build up. Swimming would probably be good, or water aerobics, which would also minimize the joint impact. (I don’t have easy access to a pool, so I have no personal experience with water exercises.)

I don’t believe joint replacement is an option for most younger (younger = 50 or under) folks unless the damage is very severe. What I’ve heard (anecdotal) is that joint replacements are only good for about 10 years. That being said, I have an acquaintance with rheumatoid arthritis (different from osteoarthritis, which is what I have and what you probably have) who has had both knees replaced. She’s a good bit younger than 50.

Some people swear by glucosamine and chondroitin supplements. I have no experience with them at this time.

Good luck, keep moving as much as you can. NSAIDS are your friends, if your stomach can handle them.

*stationary bicycle riding = mindnumbling boring unless you have something to occupy your mind, or you have a higher tedium threshold than I have.

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The first thing you need to know before you start researching arthritis is that the term “arthritis” refers to any one of at least three different conditions.

What you have is traumatic arthritis. It is local, isolated to the joints (in your case, knees) that were messed up by traumatic circumstance such as injury or (in your case) a congenital condition; I don’t know a whole hell of a lot about the prognosis and the up-to-the-moment treatments available, but I do know that you could end up reading scary stuff that doesn’t apply to traumatic arthritis if you go googling for “arthritis”.

The type of arthritis that conventionally plagues the elderly is osteoarthritis. That’s where the cartilage at the ends of the joints wears out and the bone surfaces themselves start to grate together. It is generally not localized, although it can be – that is, once one joint is starting to wear out from osteoarthritis chances are good that the others are pretty close behind. This would not be the case with the traumatic arthritis that you’ve got.

Then there’s the truly scary one, rheumatoid arthritis, which is an auto-immune disease that generally hits people (women more often than men) in their twenties or thereabouts. The body attacks its own joints and makes a mess of them; it’s systemic, it’s progessively disabling, it can result in bent and knobby and twisted joints that won’t work at all, all throughout the body, and can even be lethal. Again, things you read that pertain to rheumatoid arthritis would not apply to you, including things like elevated likelihood of you coming down with other things like lupus, scleroderma, multiple sclerosis, and so forth.

Hope this helps. Standard disclaimers. IANAD. YMMV.

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And if you are really lucky, you can have all three forms of arthritis. Well, the hands have not developed into full blown rheumatoid arthritis yet, but they are trying.

You will probably be able to tell when a weather change is coming. I can’t always tell what kind of change, but I do notice when a front moves through. I do notice that more in my shoulders than my knees, so you may not have that, at least for a while.

Get used to taking pills. I am up to 1500 mg of Naprosyn a day on a bad day.

A woman at work had both of her knees replaced. Unfortunately, she developed a large amount of scar tissue and it has not helped her. I am hoping to make it a few more years before I contemplate it, but I am only 40, so I should be able to manage that.

Good luck, and listen to your doctor. And make a list of questions to take in with you the next time you see him.

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Bethany - I think the hamsters ate my last post.

A word or two on painkillers - The most commonly used medications to treat arthritis are non steroidal anti inflammatory drugs (nsaids). All are designed to limit the effect of the cox-2 enzyme which is the cause for the pain and inflammation we experience.

The older nsaids like aspirin, ibuprofen, naprosyn, motrin, etc. all effectively inhibit the cox-2 enzyme but also inhibit the similar cox-1 enzyme which your body produces to protect your stomach lining. Some people (like me) cannot tolerate these medications because of a sensitivity or gastrointestinal conditions such as ulcers. There is a warning on most nsaids stating “this medication may cause internal bleeding” and is not to be taken lightly as quite a high number of people die each year due to nsaid related bleeding. On the bright side, most people can use these medications without negative effects and if they are working there’s no reason to change medications.

I was prescribed Naprosyn many years ago and could not take it due to the horrible side effects. I also don’t tolerate aspirin or ibuprofen very well.

If you’re me you would be taking the newer cox-2 inhibitors such as Celebrex or Vioxx which are more specific in their targeting and have a much reduced chance of causing gastrointestinal complications as they do not affect production of the cox-1 enzyme as much as other nsaids. I can also take tylenol 3 with codiene (prescribed) in addition to the celebrex if additional pain management is required. I have to be in pretty bad shape before I will consider this route as codiene has some nasty side effects too… in particular constipation.

Many health care plans will only cover these newer medications if you are unable to use other nsaids as their cost is many times higher.

All medications have benefits and risks, your doctor should be able to give you good advice and there are many online resources that you can check yourself.

Another factor that contributes to arthritis is weight as being overweight puts additional stress on the affected joints. I don’t have the option to lose anything so my cane serves as a weight reduction device when my knees are really bad.

Oh… and it’s perfectly normal to get really pissed off as arthritis is an evil condition that keeps people from doing what they love to do. I can’t go on long shopping trips, sit or stand for extended periods, or play many of the sports I enjoy. Even swimming can cause unbelievable pain as I cannot properly kick with my legs anymore as that motion has caused dislocation of my right knee (the really bad one).

I woke up in pain today (more than usual) so I’m a tad bit cranky…

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Thanks to all who have responded. The doctor prescribed Moebic, which I’ve never heard of before, and Lortab. So far the Moebic hasn’t hurt my stomach, but then again, I’ve been munching down pretty heavily (pms + bad medical news).

I have a lot of problems with my feet anyway, an undiagnosed painful neuralgia, and I have spent a lot of time and money trying to get a diagnosis. My knees have always been very undependable, so I haven’t ever done any running, dancing, sports, and the like. A walk is the best I can do. I have chronically dislocated patellas.

I went to my first physical therapy session today – I hate physical therapy. I’ve spent so much time in pt offices, I think it adds up to a few years of my life. I told the guy as much, and I had to go through the whole history of doctors and sugeries and previous therapy. It is not good, it’s like having to describe the details of being mugged or beaten or something. But the guy was super nice. He said he believed I had osteoarthritis from the degenerative condition of my knees.

I still have to do the exercises though, and boy are my knee muscles pissed off.

I am used to taking pills, so two more will be no problem. My list of medicines is so long that it won’t fit on any of the doctors forms, I just give them the sheet with the list on it and have them make a copy.

The thought of rheumatiod arthritis just squicks me out so bad. My aunt had it, and it totally consumed her body, and eventually killed her at 54. The thought of her pain horrifies me, how much she had to suffer.

They say I am too young for knee replacement, but sheesh, with 5 reconstructions in the past, if they had given me fake knees at 15, I’d just now be ready for my second set.

The therapist said that the exercises were important, but limiting my walking was a good idea, at least until my muscles are stronger. The thing about strengthening my good muscles is that it also gives strength to the bad muscles, the ones that jerk the knee out of place with any given misstep (or even a regular step). So, I am not excited about this.

Sorry to have such a long post. I’m glad that you all are posting, not that I’m glad you have it; that is horrible. But it is nice to talk about it, to hear new ideas and advice. Thanks so much.

Bethany