Less Wrong is a community blog devoted to refining the art of human rationality. Please visit our About page for more information.

Request for community insight

-4 Post author: Caerbannog 23 November 2012 02:20PM

Hi LW. I think that this community's insight could help me with my problem. I may have an undiagnosed medical condition, and I wanted to present it here in order to get some ideas, either on what it is, or what I should try to do to figure it out.

I'm a relatively active and relatively healthy-eating 36 yo male, but over the last 5.5 years I've had a bunch of musculo-skeletal problems (joints, tendons, muscles) each lasting a long time. Each of these by themselves would not be that unusual, but most have not resolved, and they are just so widespread:

- r ankle (1 yr. minor catching, occasional worse pain)

 - both knees (5 yr. major pain, catching, crepitus)

- both hips, (1 yr. major pain, better right now, but not gone)

- r shoulder (major weakness resolved after 2y by aggressive stretching)

- neck (6 mo., helped by stretching upper back , but still a problem: can't swim)

- l elbow (3yr. minor pain and weakness)

Some (maybe all) of these feel like they could be due to muscles getting so tight or short that they overtax the connected tendons/bones/cartilage.

The knees are the worst right now, though the hips were just as bad. I'm not sure what made the hips get better, possibly strengthening hip abductors.

Additionally, approximately at the time this started, I became lactose intolerant, but am currently okay. I also started getting springtime allergies for the first time 5.5 yrs ago.

I started a gluten-free diet a couple of weeks ago, and have also stopped all exercise for the last 3 weeks, but no effect so far. Because I've been active and athletic for so long, the physical problems are a major impact on my life and have a huge negative impact on my mood. I've never felt worse in my life, honestly.

I'm presenting this here because I know the reponses I get will be well thought out.

I appreciate your time. Thanks!

Comments (12)

Comment author: shminux 23 November 2012 03:53:18PM 13 points [-]

I have some ideas, but first things first: what does your doctor say?

Comment author: PhilipL 24 November 2012 04:59:59AM *  0 points [-]

This, pretty much. Most of us here are decidedly not qualified to give medical advice. (Edit: didn't see Caerbannog's comment in the thread above.)

Comment author: noen 23 November 2012 04:17:51PM -2 points [-]

You're getting old. The long term prognosis is that the condition is fatal. ;)

Comment author: NancyLebovitz 23 November 2012 04:37:42PM 2 points [-]

What he's describing isn't normal aging.

Comment author: Kawoomba 23 November 2012 07:20:53PM 1 point [-]

Depending on the kinds of sports he did, and the intensity with which he pursued them, it might well fall in the normal range of expected attrition.

Comment author: NancyLebovitz 23 November 2012 07:25:16PM 5 points [-]

It might be, but noen's implication that he shouldn't try to do anything about it is still bad advice.

Comment author: Kawoomba 23 November 2012 07:43:12PM 1 point [-]

I agree.

The advice should be to go somewhere where they can actually physically examine him, there's a host of hands-on physical tests that would point the way.

Barring that, he is missing a host of crucial information, such as family history, connection of affected joints to sports done at the time, what kind of pain, triggers for the pain, the list goes on.

That he doesn't provide his health care provider's opinion makes me wonder if he even sought professional medical attention. If so, why withhold it and make it even more of a guessing game? If not, I mean, really? (It'd be hard to help someone who - if my suspicion proved correct - chooses such an irrational way of solving a problem that he attributes "feeling the worst he ever felt in his life" to.) OP, if you're reading this, what did the orthopaedic doctor say? Had any bloodwork done, ANA, dsDNA etc. antibodies in particular?

I wonder why noen's bad advice is downvoted, while a random stab of "might be autoimmune" isn't.

Comment author: NancyLebovitz 23 November 2012 07:51:33PM 2 points [-]

I'm one of noen's downvoters, so I can at least explain part of what's going on.

Their comment seems wrong, malicious, and destructive, whereas drethelin's advice is a probably harmless suggestion to investigate. My stab in the dark would be to check for side effects of prescription drugs, some of which (statins) can affect connective tissue.

Comment author: Caerbannog 23 November 2012 09:54:28PM 0 points [-]

I've been to doctors for the major joint problems, but they've said various contradictory things that have never helped. They've told me that it's aging. When I had my knee scoped the orthopedic surgeon told me that I "have naturally soft cartilage" . I don't think highly of that diagnosis.

In my experience, modern medicine is not that good with things unfamiliar to it.

I have been to doctors many times, but I don't believe that they've given me information that's useful.

Comment author: Epiphany 28 November 2012 03:07:12AM *  1 point [-]

I learned from various people I've talked to who have had actual health problems that doctors often fail to figure things out (Examples: They do a pile of tests that come out negative and shrug it off or throw pills at it and never get down to the root cause.) and even fail to give useful referrals, so if that's why you're asking, I can grok why you're looking for answers here.

I find that if I just go to any old doctor, they have no idea what is wrong. The only way I've ever been helped is to find someone who specializes in my set of symptoms and has lots of experience with it. The absolute best thing to do would be to find somebody who has had the same problem and has seen it resolved by a doctor who specializes in those symptoms, and get a referral to THEIR doctor. (That, more specifically, was what I did.) A group dedicated to your problems might be a good place to ask for a useful referral.

Barring that, a doctor or GP who has a special interest in your group of symptoms is likely to be more useful than an arbitrary general practitioner. GPs have to remember tens of thousands of symptoms and match them to tens of thousands of conditions - not a very reasonable thing to expect of a human brain when it comes down to it. That's a key reason I think the people I know are so frequently having problems with getting a useful diagnosis. (Note: www.diagnose-me.com claims to help counter this problem. It's a program that takes a 1000 symptom questionnaire and searches a bunch of medical data to give you suggestions for what might be wrong, and they have doctors on staff to review the results as well. I've tried it - it's inexpensive and marvelously detailed. Not all their info is accurate, but if your expectation is simply to get ideas to have checked by your doctor, this is likely to give you some.)

I'm not a doctor, but here's an idea you can take to a medical professional to get evaluated for if interested:

Your digestive system and immune system seem involved. It occurs to me to mention that one can have an infection in their digestive system without realizing it. Aside from your immune symptom (allergies), and digestive-immune link (I read that the majority of your immune system is located in your digestive system) there may be another link: I read somewhere that the immune system outputs substances that cause aches and pains when fighting infections (if I am not mistaken, one specific substance that causes this is tumor necrosis factor-alpha).

Consider getting tested for microbial imbalances in your digestive system. Candida albicans, a yeast, is supposed to be a common cause of dysbiosis and might be especially useful to research.

Before killing bugs in your digestive system, ask the doctor if doing dietary modification before taking the anti-microbials would be a good idea. Helping them multiply by giving them the foods they prefer while also killing them off can result in a prolonged Herxheimer reaction. This essentially results in feeling 10x worse for however long.

Let me know if that helps.

Comment author: NancyLebovitz 23 November 2012 04:43:55PM 0 points [-]

I've had a possibly similar problem with my right leg. It's almost entirely cleared up now, presumably as the result of high quality massage. I'll ask the person I go to what her background is if you're interested.

Comment author: drethelin 23 November 2012 07:01:21PM -1 points [-]

Could be some variety of auto-immune