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    Default Differential Needed: Recurrent Soft Tissue Joint Pain

    So I've been dealing with this problem for a while, and it's recently flared up yet again despite my efforts to contain it. I've looked into dozens of solutions and explanations over the years, but have come up with relatively little. As this this kind of musculoskeletal issue is fairly far from my areas of interest, I'm hoping those of you more knowledgeable on such matters than I can shed some light on this issue. If you're short on time, just read the summary.

    Summary: For six years, I've had chronic, recurrent soft tissue pain -- seemingly either at the tendon, fascia, or muscle level -- in multiple joints, with the number of affected regions increasing with time. Currently, both shoulders, both elbows and wrists, my right adductor, my right biceps femoris, my right vastus medialis, and my right masseter are afflicted. Physical therapy has helped, as have strengthening exercises, but the pain inevitably returns with even the slightest increase in use. None of the injuries had a precipitating event or trauma. I've mostly ruled out genetic problems with collagen formation, autoimmune conditions, and hormonal causes. So, I put it to you all: what are some potential explanations for this kind of widespread joint point? What haven't I explored that would be worth my time?

    Pain

    Typically feels similar to tendinitis, with a chronic dull burning pain and at times an acute stabbing pain. In my shoulders and forearms, is frequently bad enough that very light activities such as typing and writing are excruciating. If this just prevented me from lifting, it would be a much less severe issue.

    When this issue first hit and I only had shoulder pain, I was bedridden for three months because the pain was bad enough I couldn't so much as use a remote control without excruciating pain. Eventually compression banding and eccentric training managed the pain and it slowly got better over the course of a year. But it still flares up quite often and can make typing infeasible for weeks at a time.

    Causes Ruled Out

    1. ANA and rheumatoid factor have been negative twice. No apparent arthritis or bone pain. Autoimmune is still technically possible, but seem extremely unlikely.

    2. Hormones are optimized, as I'm on GH, testosterone, and thyroid for separate reasons. rT3 is in range, and no other symptoms of hypothyroidism.

    3. 23andMe found no markers for genetic collagen disease.

    4. Some of these could be considered repetitive use injuries, but typically the level of use that precipitates the injury is far, far below the typical threshold for a repetitive use problem. Given that, this could be considered some kind of hypersensitivity to repetitive use.

    Treatments I've Tried

    1. Physical therapy. Has sometimes helped, but results have been slow and inconsistent, and typically pain returns. PTs are usually stumped. Pain is clearly originating in muscle. Strengthening exercises and eccentrics have helped, but results inconsistent and short-lived.

    2. Trigger point massage. Has helped in some cases and in some regions, but results are temporary. Also in many cases seems to cause enough inflammation or tissue damage that it hurts more than it helps. Granted, my form may not be ideal, but this is really a stopgap measure anyway.

    3. NSAIDs. These do nothing with acute treatment, and make it worse with chronic treatment. Not really a surprise.

    4. SSRIs. Did not by any means eliminate the pain, but probably had the least amount of pain in recent memory while on fluxoetine. Unfortunately, not an option for me for the time being due to bruxism/TMJ.

    5. Curcumin. Also probably helped to some extent, but not too sure about long-term harm/benefit when it comes to collagen injury, and also not feasible due to bruxism/TMJ.

    6. Cissus. Didn't do nearly enough to justify buying more of it. Not really sure I saw much of any effect, and the research on soft tissue injury is nearly nonexistent.

    7. Oral corticosteroids. Saw nothing, though did not run them for very long. (About 2 weeks of moderate-dose prednisone, IIRC.)

    8. Trandermal corticosteroids. Used iontophoresis for this along with dexamethasone. Probably the single most impressive reduction in pain of anything I tried, but I don't like the long-term consequences, and I can't get my hands on this stuff anyway.

    9. Eccentric training. Helped my biceps tendinitis/shoulder pain, but seems to cause more harm than good on other injuries.

    10. Compression banding. Putting pressure on the tendon and surrounding tissues seems to help both my shoulders and forearm, but it's not an ideal solution for obvious reasons. Also doesn't work on other injuries.

    Given that this is flaring up again and I'm seemingly out of options, I'm very interested in any hypothesis or conceivable diagnoses that might fit. I'm more than willing to entertain "fringe" ideas, as no one I've spoken with has a damn clue, and I've spoken with some very, very good doctors.
    Last edited by Ex Dubio; June 7th, 2011 at 11:13 PM.

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    Ex, you have exactly what I have. To a T. My bodyparts are different, but this is very similar to how I would explain it. Do you have any other issues?

    Dry eyes?
    Sensitive teeth?
    Any pain in the joint itself?
    Any joint swelling?
    Do you notice a lot of joint cracking/popping/snapping? In other words, do you think your joints are noisier than they should be?

    Have you ever taken a quinolone?

    Have you ever seen a rheumatologist?

    How is the ESR?
    Other inflammation markers?

    Have you ever had a genetic test for ankylosing spondylitis (HLAB-27)?

    I know you have some sort of hypothalamic/pituitary dysfunction, at least enough to necessitate the hormone replacement. Can you go into detail about your medical history so I can take that stuff into consideration?

    Our cases are so similar I am hoping we can help each other out. I'm usually the person doing the helping (or at least trying to) on other forums, and I notice people haven't been able to give me very much advice (good or bad).
    Last edited by cubbieblue; June 7th, 2011 at 11:24 PM. Reason: I keep fucking changing this, I'm sorry.

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    Quote Originally Posted by cubbieblue View Post
    Ex, you have exactly what I have. To a T. My bodyparts are different, but this is very similar to how I would explain it. Do you have any other issues?
    Interesting, very interesting.

    Dry eyes?
    Yes, but potentially unrelated. I wear hard contacts, and tend to only have problems with eye dryness when wearing them.

    Sensitive teeth?
    Nope.

    Any pain in the joint itself?
    Not entirely sure just how I'd differentiate that from pain outside the joint, but I don't think so. PT evaluations have typically concluded with a diagnosis of myofascial pain or tendinitis, but never anything with the joint directly.

    Any joint swelling?
    Don't think so.

    Do you notice a lot of joint cracking/popping/snapping? In other words, do you think your joints are noisier than they should be?
    Not really.

    Have you ever taken a quinolone?
    I knew you'd ask that! To my knowledge, no. I didn't have many bacterial infections as a child, and I only ever remember taking amoxicillin.

    Have you ever seen a rheumatologist?
    Yeah, he glanced at my ESR, CRP, ANA, and RF, and said I was clear. Not that I necessarily believed him, but there you go. He was a well-respected university doctor, as well.

    How is the ESR?
    Haven't tested in a while. Last test was in 3/08, during a flare-up of pain, and ESR was 0 (0-15). I did hit 26 (0-15) in 11/07, but don't remember what extenuating circumstances there might have been.

    Other inflammation markers?
    CRP at same time as last ESR, during a flare-up, was 0.96 mg/L, I believe. No reference range, for some reason. ANA then was 45 (0-99) and RF was <7 (0-13.9).

    Have you ever had a genetic test for ankylosing spondylitis (HLAB-27)?
    No, but given absence of spine pain, that seems like quite a stretch for a fit.

    I know you have some sort of hypothalamic/pituitary dysfunction, at least enough to necessitate the hormone replacement. Can you go into detail about your medical history so I can take that stuff into consideration?
    There's not a lot to say. Been on TRT and thyroid for 6 years, GH for 3 years. MRI showed nothing wrong with my pituitary and Arg-GHRH test showed normal pituitary GH-secreting function, despite rock-bottom IGF-1 levels. The upshot is that the source of the pathology was never determined, but is presumed to exist at the hypothalamic level. At time of diagnosis, has undetectable LH/FSH, extremely low IGF-1 and DHEAS, and low free T3/T4. It's all still considered idiopathic, and started when I was about 17 years old. Joint problems started about a year later, but I've never found a connection between the two.

    Our cases are so similar I am hoping we can help each other out. I'm usually the person doing the helping (or at least trying to) on other forums, and I notice people haven't been able to give me very much advice (good or bad).
    Yeah, I stopped asking for advice on this years ago, because I rarely got anywhere and usually ended up giving help more than receiving it, which was fine. But there's a lot of new blood on these boards, and I'm getting a surprising revival of pain, so I thought I'd throw it out there and see what people think.

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    If the rheumatologist was worth anything he would have been able to tell you if you had any joint swelling..so it is probably safe to say you don't have much. I don't either.

    That high ESR makes me suspicious.

    I've had positive results on ANA screens, but when they do the quantitative analysis there is actually nothing there. So, from what I have been told by multiple doctors it is not of any clinical significance and in line with a decent percentage of the population.

    If you talk to people with ankylosing spondy (AS) some of them have minimal or no spine pain. It can develop very slowly and hit that area last.

    The idiopathic hormone issues are interesting. I went back and looked at some of your threads and saw you had what looked to be some sort of a crash diet. That may have precipitated things. However, your levels of 78 ng/dl are super fucking low...to low for that to be caused by rapid weight loss alone, I think.

    If you take the quinolones out of my equation (which is hard for me to do, because I am 99.9999% sure they are the causative agent for me) my tendon/joint pain started a little less than a year after starting TRT myself.

    How are your cortisol levels?

    How do you manage your T replacement? Test injections? hCG? An AI?

    I don't think lyme is a possibility but still, have you had a test?

    How are your calcium levels throughout your medical history? Any parathyroid hormone results? (I don't think there is anything here either, but worth asking)

    Have you ever been on any long term (a month or longer) anti-inflammatory (Rx or herbal)? If so did it noticeably help the issues?

    Have you ever had a doctor give you a decent diagnoses or just a fibro type diagnosis with a pat on the back telling you it will be ok?

    Has it seemingly gotten worse since starting HGH treatment?

    Out of all the guys I know with our similar symptoms 2 have AS, 1 is still a mystery, and the rest have exposure to quinolones that make it difficult to diagnose anything but quinolone toxicity.

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    Also, this is NOT normal. Normal people do not have over-use tendonitis in their freaking jaw from chewing. So, do not assume this is just how you are and stop looking for an answer.

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    Quote Originally Posted by cubbieblue View Post
    If the rheumatologist was worth anything he would have been able to tell you if you had any joint swelling..so it is probably safe to say you don't have much. I don't either.
    I'd assume some PT along the way would have seen this as well unless it was very minor.

    That high ESR makes me suspicious.
    Maybe. But doesn't ESR go up during basic infections, including viruses like cold/flu?

    FWIW, I have four more ESR readings from '07 and earlier, all of which are in the vicinity of 7 (0-15).

    I've had positive results on ANA screens, but when they do the quantitative analysis there is actually nothing there. So, from what I have been told by multiple doctors it is not of any clinical significance and in line with a decent percentage of the population.
    Interesting. And I've had two, both definitely negative.

    If you talk to people with ankylosing spondy (AS) some of them have minimal or no spine pain. It can develop very slowly and hit that area last.
    Lovely. Man, that is one disease I'd really rather not have.

    The idiopathic hormone issues are interesting. I went back and looked at some of your threads and saw you had what looked to be some sort of a crash diet. That may have precipitated things. However, your levels of 78 ng/dl are super fucking low...to low for that to be caused by rapid weight loss alone, I think.
    That's a complicated story. The weight loss may have followed the hormonal abnormality, as it was preceded by an extreme reduction in appetite.

    Also, several years later, when at a weight of ~150 lbs., which is pretty normal for someone who's 5'7" with a small-ish frame, I still had low DHEAS and IGF-1 levels. That was before I went on GH, of course, but the point is that even with weight and testosterone/thyroid normalization, the other parameters never recovered.

    And yeah, my testosterone level was stunningly low.

    If you take the quinolones out of my equation (which is hard for me to do, because I am 99.9999% sure they are the causative agent for me) my tendon/joint pain started a little less than a year after starting TRT myself.
    Sounds like quite a coincidence. There are no direct mechanisms that seem to explain that. The only thing I can think of -- and boy is it a stretch -- is that a number of viruses have androgen response elements. But that seems unlikely to be related.

    How are your cortisol levels?
    Not as high as I'd like, but not really all that bad. Usually 12-14 (4-22) at 8 AM.

    How do you manage your T replacement? Test injections? hCG? An AI?
    Did gel for a few years, then switched to testosterone cypionate. Symptoms started while on gel, for what that's worth. No AI necessary, as E2 manages itself, and yeah I've used hCG at 150 IU 2x/week SubQ since I started.

    I don't think lyme is a possibility but still, have you had a test?
    Haven't been tested. I was bitten by a tick when I was young -- about 7 years old -- and did manifest personality changes shortly thereafter, but I always attributed that to my family moving. Also, the tick bite was either in Minnesota or California. For some reason I thought neither of those had a high incidence, but looking now it seems Minnesota does have a fairly high incidence. Still, seems like I ought to have other symptoms to fit Lyme. But I haven't been tested.

    That said, any idea what the recommendations are on testing these days? I imagine Quest/LabCorp has a test of sorts, and I know there's Igenex, but I also know the latter is surrounded by controversy. Guess I'll have to do some research.

    How are your calcium levels throughout your medical history? Any parathyroid hormone results? (I don't think there is anything here either, but worth asking)
    Always borderline high, though not sure what to make of that. Generally right around 10 (8.7-10.2), and occasionally going over the range. PTH was quite normal, though, the one time I had it tested, and was 12 (10-65).

    Have you ever been on any long term (a month or longer) anti-inflammatory (Rx or herbal)? If so did it noticeably help the issues?
    When I first got the pain, I was on ibuprofen for a few months. I've been on ibuprofen for a month here and there since. This recent resurgence may have been triggered by being on high-dose ibuprofen for several months due to my TMJ issues, but it still seems awfully weird to have such a radically pathological response to ibuprofen. We've discussed the research, of course, pointing to its ability to induce MMPs and the like, but I've known too many people who've been on the stuff for years without incident to believe that it could be the only cause.

    Weirdly enough, though, I'm not even sure it really helped. Maybe at first, but definitely not in the long-run.

    As I mentioned before, I also was on curcumin for a few months, which probably helped, but that wasn't during a flare-up.

    Have you ever had a doctor give you a decent diagnoses or just a fibro type diagnosis with a pat on the back telling you it will be ok?
    I stopped messing with Dx codes years ago. I've been with a great doctor for several years, and he's served me quite well, but is understandably stumped by this.

    No formal diagnoses related to the pain. Fibromyalgia might be a loose fit, but it's not like it even matters, as it's almost certainly a heterogeneous grouping of diseases.

    Has it seemingly gotten worse since starting HGH treatment?
    If anything, it got better, but I doubt it had any real effect on the joint pain.

    Out of all the guys I know with our similar symptoms 2 have AS, 1 is still a mystery, and the rest have exposure to quinolones that make it difficult to diagnose anything but quinolone toxicity.
    Interesting. Do AS and the mechanism of quinolone toxicity have any pathological features in common? The scientist in me wants to find the common factor.

    Quinolones induce toxicity by interrupting mitochondrial function, right? Is the full pathway between quinolone action and connective tissue dysfunction mapped out and understood? I'd imagine not, given the controversy, but I know very little about this issue.
    Last edited by Ex Dubio; June 8th, 2011 at 01:27 AM.

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    Interesting, it might help me out too if you figure out what it is. I've been diagnosed with fibromyalgia but I'm not sure if that's what it is. I don't respond to nsaids, acetaminophen, muscle relaxers, curcumin, etc.

    Gabapentin and benzos do work for TMJ and the TMJ-related headaches, while opiates help with the rest of my muscle pain (or what I assume is muscle pain). I've tried almost every supplement except for some of the more exotic and expensive ones.

    I sort of gave up on trying to figure out what it is or how to stop it, but I still keep up with physical therapy and trigger point therapy, despite it not helping hopefully I can just keep it from getting worse.

    I've found dancing to be the most helpful physical activity for short term relief (no homo).
    Last edited by Azx; June 8th, 2011 at 01:27 AM.

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    Quote Originally Posted by cubbieblue View Post
    Also, this is NOT normal. Normal people do not have over-use tendonitis in their freaking jaw from chewing. So, do not assume this is just how you are and stop looking for an answer.
    I'm well aware. If I come off as relatively relaxed about the issue, it's only because I've been dealing with various medical issues for years. If I got worked up about it all the time, I'd never be able to take care of my career. The joint pain is serious and disruptive, but I'm rather seriously managing my expectations.

    As an aside, the jaw pain is the least anomalous of the aforementioned issues. I've had bruxism -- that is, involuntary jaw clenching -- while awake for a few years now, though it was always mild until I had my wisdom teeth extracted. After that, it finally become severe enough that it led to chronic TMJ/jaw pain. But the progression of bruxism to TMJ/jaw pain is not actually that unusual.

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    Quote Originally Posted by Azx View Post
    Interesting, it might help me out too if you figure out what it is. I've been diagnosed with fibromyalgia but I'm not sure if that's what it is. I don't respond to nsaids, acetaminophen, muscle relaxers, curcumin, etc.
    Yeah, I know what you mean about the fibromyalgia uncertainly. As I mentioned, I'm still not convinced that's a single disease. And indeed, I've also found no relief from NSAIDs, acetaminophen, or muscle relaxants, though that might be unsurprising if it's non-inflammatory and not actually related to excess muscle tension.

    Gabapentin and benzos do work for TMJ and the TMJ-related headaches, while opiates help with the rest of my muscle pain (or what I assume is muscle pain). I've tried almost every supplement except for some of the more exotic and expensive ones.
    Yeah, benzodiazepines are kind of amazing for TMJ, but they're so amazing that I've largely stayed away. I've mostly managed with muscle relaxants, trigger point massage -- particularly that damn lateral pterygoid, magnesium, and ice and heat. Definitely better off now than I was, but it's still a bitch. Do you have bruxism too, or did TMJ spontaneously manifest?

    I sort of gave up on trying to figure out what it is or how to stop it, but I still keep up with physical therapy and trigger point therapy, despite it not helping hopefully I can just keep it from getting worse.
    Honestly, that's where I've been for several years. I haven't been bedridden since it started, so it's mostly been a matter of making sacrifices and dealing with the pain.

    I posted because I was sitting in a physical therapist's office this morning as he was asking me where I had pain, and as he predictably responded with surprise when I enumerated the number of affected joints, it occurred to me that this really is exceptionally unusual. And so I figured it couldn't hurt to see if anyone here might have some thought-provoking ideas.

    I've found dancing to be the most helpful physical activity for short term relief (no homo).
    I'm also a fan.

    Actually, I've always found any kind of [low-impact] physical activity to be pretty valuable. When my pain was at its worst, one of the only things I could do to make it stop was to go on long walks. Not sure if it was the increased blood flow or something else entirely, but walking substantially reduced the amount of pain.

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    Quote Originally Posted by Ex Dubio View Post
    I'm well aware. If I come off as relatively relaxed about the issue, it's only because I've been dealing with various medical issues for years. If I got worked up about it all the time, I'd never be able to take care of my career. The joint pain is serious and disruptive, but I'm rather seriously managing my expectations.

    As an aside, the jaw pain is the least anomalous of the aforementioned issues. I've had bruxism -- that is, involuntary jaw clenching -- while awake for a few years now, though it was always mild until I had my wisdom teeth extracted. After that, it finally become severe enough that it led to chronic TMJ/jaw pain. But the progression of bruxism to TMJ/jaw pain is not actually that unusual.
    The jaw pain does make sense when you mention the chronic bruxism issues.

    I know it is a balance between ignoring it and getting on with life and dealing with it...but I'm the typical man who MUST solve problems or else I go nuts.

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    I'd assume some PT along the way would have seen this as well unless it was very minor.
    Maybe. I don't have a lot of faith in most PTs, but if you've seen good ones, then yeah.

    But doesn't ESR go up during basic infections, including viruses like cold/flu?
    It's general inflammation, it can be caused by anything. I have a baseline from when I had no joint issues and it was 7, taken right at the tail end of a grueling rugby season. Mine now, with all of these issues was 2...a lot lower from one would expect.

    FWIW, I have four more ESR readings from '07 and earlier, all of which are in the vicinity of 7 (0-15).
    Most doctors would say "meh" to that number, and I tend to as well. However, if you were pretty inactive with that number, it may be a clue.

    Sounds like quite a coincidence. There are no direct mechanisms that seem to explain that. The only thing I can think of -- and boy is it a stretch -- is that a number of viruses have androgen response elements. But that seems unlikely to be related.
    Yeah, you are right. The thing is I've seen more than a handful of anecdotal reports from people over the years complaining of joint pain after starting TRT. I'm not sure why...and it always kind of stuck in my mind. My theory is that those people started AIs early and heavy and that is the cause.

    Not as high as I'd like, but not really all that bad. Usually 12-14 (4-22) at 8 AM.
    Right about where mine are last time I checked.

    Did gel for a few years, then switched to testosterone cypionate. Symptoms started while on gel, for what that's worth. No AI necessary, as E2 manages itself, and yeah I've used hCG at 150 IU 2x/week SubQ since I started.
    Me too but no hCG.

    Lyme Stuff
    Just go to your GP and ask for a lyme test. Start with whatever your local hospital/whatever lab he works with uses and go from there. I tested negative, but I don't think I've ever been hit by a tick. Get the test and scratch it off your list. If you are still wondering about it you can come back to Igenexx and other shit later on.

    Always borderline high, though not sure what to make of that. Generally right around 10 (8.7-10.2), and occasionally going over the range. PTH was quite normal, though, the one time I had it tested, and was 12 (10-65).
    As long as the PTH is that low you are fine. More on PTH here: Hyperparathyroidism: Diagnosis of Parathyroid Disease (Hyperparathyroidism) by High Calcium and Parathyroid Hormone Levels. Hyperparathyroidism and parathyroid problem diagnosis is on parathyroid.com.

    When I first got the pain, I was on ibuprofen for a few months. I've been on ibuprofen for a month here and there since. This recent resurgence may have been triggered by being on high-dose ibuprofen for several months due to my TMJ issues, but it still seems awfully weird to have such a radically pathological response to ibuprofen. We've discussed the research, of course, pointing to its ability to induce MMPs and the like, but I've known too many people who've been on the stuff for years without incident to believe that it could be the only cause.
    Well, the recent flare up could be some sort of rebound inflammation. I definitely noticed when I stopped curcumin that I flared for about two weeks before normalizing.

    Interesting. Do AS and the mechanism of quinolone toxicity have any pathological features in common? The scientist in me wants to find the common factor.

    Quinolones induce toxicity by interrupting mitochondrial function, right? Is the full pathway between quinolone action and connective tissue dysfunction mapped out and understood? I'd imagine not, given the controversy, but I know very little about this issue.
    AS is an inflammatory chronic condition, widely thought to be an auto-immune disease. It is particularly insidious as there is no easy direct test for it. It's a diagnosis of exclusion and flowcharts. I say "thought" because it's a little bit different than other auto-immune diseases. It seems kind of like the inflammation process is just chronically over-active in it.

    Quinolone Toxicity is a huge fucking mystery. I've attached a paper from Mayo on it. They are off base on blaming its chelating effects...it does chelate Mg and other minerals, but that's not causing the problem. There are two schools of thought:
    - it's autoimmune related (some people have high ANA titers but they are almost always transient) and the flares cycle
    - it's direct toxicity through mtDNA damage

    Within those two theories is the possibility there is some sort of inflammation cycle going on, vasculitis issues, and who knows what else. What confounds the issue a shitload (to me) is that corticosteroids almost universally make the individual much, much worse. In the sense of multi-month/year relapses causing new symptoms (neuropathy, new tendon pains, etc.) It makes no sense.
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    Quote Originally Posted by cubbieblue View Post
    Maybe. I don't have a lot of faith in most PTs, but if you've seen good ones, then yeah.
    I don't either, but I'm thinking it's a numbers game -- it'd be surprising if one didn't, as I've seen something like a dozen. That said, I too share a rather low opinion of most physical therapists.

    It's general inflammation, it can be caused by anything. I have a baseline from when I had no joint issues and it was 7, taken right at the tail end of a grueling rugby season. Mine now, with all of these issues was 2...a lot lower from one would expect.


    Most doctors would say "meh" to that number, and I tend to as well. However, if you were pretty inactive with that number, it may be a clue.
    Yeah, indeed I was pretty active during that time. But I posted them for completeness; it's pretty clear they don't point to much.

    Yeah, you are right. The thing is I've seen more than a handful of anecdotal reports from people over the years complaining of joint pain after starting TRT. I'm not sure why...and it always kind of stuck in my mind. My theory is that those people started AIs early and heavy and that is the cause.
    Interesting. That's quite peciliar, but I'm awfully inclined to go with the AI theory.

    Right about where mine are last time I checked.
    And, in fairness, those really aren't too pathological.

    Just go to your GP and ask for a lyme test. Start with whatever your local hospital/whatever lab he works with uses and go from there. I tested negative, but I don't think I've ever been hit by a tick. Get the test and scratch it off your list. If you are still wondering about it you can come back to Igenexx and other shit later on.
    Yeah, it's actually been on my to-do list for a while, but you're right, I should just get this taken care of.

    Yeah, it was something I checked a while ago, as my mother had hyperparathyroidism.

    Well, the recent flare up could be some sort of rebound inflammation. I definitely noticed when I stopped curcumin that I flared for about two weeks before normalizing.
    I doubt it. I stopped ibuprofen more than a month ago, and the flare-up was more recent. In the past, the post-ibuprofen flare-ups have been quite long-lived, too. My suspicion remains some kind of pre-existing problem combined with increased collagen degradation from ibuprofen. But it's more or less pure conjective

    AS is an inflammatory chronic condition, widely thought to be an auto-immune disease. It is particularly insidious as there is no easy direct test for it. It's a diagnosis of exclusion and flowcharts. I say "thought" because it's a little bit different than other auto-immune diseases. It seems kind of like the inflammation process is just chronically over-active in it.
    Yeah, I've read bits here and there about it, and mostly know enough to know that it's poorly understood and the quality of life of patients is shockingly low in many cases. Will have to do more research, I suppose.

    Quinolone Toxicity is a huge fucking mystery. I've attached a paper from Mayo on it. They are off base on blaming its chelating effects...it does chelate Mg and other minerals, but that's not causing the problem. There are two schools of thought:
    - it's autoimmune related (some people have high ANA titers but they are almost always transient) and the flares cycle
    - it's direct toxicity through mtDNA damage

    Within those two theories is the possibility there is some sort of inflammation cycle going on, vasculitis issues, and who knows what else. What confounds the issue a shitload (to me) is that corticosteroids almost universally make the individual much, much worse. In the sense of multi-month/year relapses causing new symptoms (neuropathy, new tendon pains, etc.) It makes no sense.
    Interesting, thanks. I'll give it a read. Fascinating that quinolones, too, might induce autoimmunity -- perhaps that is somehow the common fixture? I've often wondered if this pain was an odd manifestation of some kind of autoimmune disease, but the lack of systemic inflammation and standard autoimmune blood draws always made me skeptical enough that I ended up not pursuing it.

    Regarding the mtDNA damage, though, I'm curious. Do quinolones pass the BBB? Because much of what I've read suggests that any compounds (or at least lipid-soluble compounds) that induce mitochondrial dysfunction should either induce Parkinson's disease or dramatically increase the risk of it. This is, of course, based on the exquisite metabolic vulnerability of nigrostriatal DA neurons. Along similar lines, if quinolones do cause mitochondrial damage, why is connective tissue preferentially targeted? Do tendons have unusually high levels of mitochondrial activity and/or oxidative stress?

    And I gather no one has even a theory to explain the intensely paradoxical effects of corticosteroids?

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    So, back to the point, assuming we can definitively rule out vitamin deficiencies, as far as a differential diagnosis I can come up with:

    Lyme Disease
    Ankylosing Spondylitis
    Some sort of progressive inflammatory state - like AS but not as severe
    Quinolone Toxicity (sorry, not letting this one go until you can definitively say you've never taken a quinolone...I will put this at the very bottom of the list though)

    I'm not convinced that inflammatory conditions don't exist in individuals with low inflammatory markers.

    And I know we've talked about it in depth, but part of me still wonders if it really is smarter to kill inflammation, even though it may have some long term degenerative effects.

    So, what's been beneficial for the people I've talked to?

    In most QT sufferers: time

    For the AS people: NSAIDs, corticosteroids, and the most beneficial thing has been Humira. Humira has been nothing but life changing for the people I have talked to.

    Interestingly, there is one anecdotal report of a quin sufferer taking Humira for 3 months, having a complete remission of symptoms, and living happily ever after.

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    Interesting, thanks. I'll give it a read. Fascinating that quinolones, too, might induce autoimmunity -- perhaps that is somehow the common fixture? I've often wondered if this pain was an odd manifestation of some kind of autoimmune disease, but the lack of systemic inflammation and standard autoimmune blood draws always made me skeptical enough that I ended up not pursuing it.
    Quins can cause Lupus, Sjogrens, and I think a few others, but that seems to be pretty rare, even amongst the people who have been "floxxed" so to speak.

    Regarding the mtDNA damage, though, I'm curious. Do quinolones pass the BBB? Because much of what I've read suggests that any compounds (or at least lipid-soluble compounds) that induce mitochondrial dysfunction should either induce Parkinson's disease or dramatically increase the risk of it. This is, of course, based on the exquisite metabolic vulnerability of nigrostriatal DA neurons. Along similar lines, if quinolones do cause mitochondrial damage, why is connective tissue preferentially targeted? Do tendons have unusually high levels of mitochondrial activity and/or oxidative stress?
    I think they do pass the BBB to a certain extent. I have never heard of them inducing parkinsons, but they certainly induce similar symptoms. Tremors, myoclonic jerks, fasciculations, neuropathy, etc. Those are actually probably more common than the tendon issues in most. I don't know if the preferentially target connective tissues so much as that's just the most noticeable side effect. They will also eventually get cartilage, muscle, and all the CNS stuff I mentioned.

    And I gather no one has even a theory to explain the intensely paradoxical effects of corticosteroids?
    Most of the quin sufferers are scared, a bit older, and seriously damaged...so much as to compromise the amount of time they can spend on a computer/typing. They are good at noticing trends and communicating anecdotal information but suck at figuring out why things happen. There are a few younger people and long timers that try/tried but they've pretty much gotten as far as they can without the medical community's help. That Mayo paper is relatively new and stuff we all knew for a long time.

    We have about 4-5 known MDs that are floxed, but they haven't been able to figure anything out either. The only theory I've seen is that corticosteroids are detrimental to tendons, and thus it makes things worse. But, then you hear stories about people causing symptoms to get worse from using topical 1% HC cream, which I just can't see happening. Yet, it's been reported more than a handful of times.

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    Quote Originally Posted by cubbieblue View Post
    So, back to the point, assuming we can definitively rule out vitamin deficiencies, as far as a differential diagnosis I can come up with:

    Lyme Disease
    Ankylosing Spondylitis
    Some sort of progressive inflammatory state - like AS but not as severe
    Quinolone Toxicity (sorry, not letting this one go until you can definitively say you've never taken a quinolone...I will put this at the very bottom of the list though)
    Not a pretty list, but this is definitely the kind of stuff I've been looking for, thanks.

    I'm not convinced that inflammatory conditions don't exist in individuals with low inflammatory markers.
    It's certainly in the realm of possibility. I'm unfortunately not well enough acquainted with the mechanisms by which inflammation elevates ESR/CRP to say more than that.

    And I know we've talked about it in depth, but part of me still wonders if it really is smarter to kill inflammation, even though it may have some long term degenerative effects.
    Yeah, I know what you mean. My experience with ibuprofen makes me doubt that on one hand, but on the other, ibuprofen is an absolutely awful anti-inflammatory in terms of MMPs, GAG, and everything else we talked about in the other threads. And I do remember having essentially no problems with pain while on curcumin.

    Now I've just gotta go about finding the strongest NF-kappaB inhibitor that doesn't inhibit MAO.

    So, what's been beneficial for the people I've talked to?

    In most QT sufferers: time
    It goes without saying, but that sucks.

    For the AS people: NSAIDs, corticosteroids, and the most beneficial thing has been Humira. Humira has been nothing but life changing for the people I have talked to.
    Interesting. Corticosteroids have always made me feel amazing, but of course the withdrawal is always awful too. The choice to use Humira would, I'd think, be quite difficult in a case of moderate impairment. I too have heard the drug works wonders in the conditions for which it is indicated, but that's at the price of a significantly increased risk of serious infection and cancer. It's an obvious choice for severe disease, but particularly in a condition without definitive diagnosis, that is a tricky issue.

    Interestingly, there is one anecdotal report of a quin sufferer taking Humira for 3 months, having a complete remission of symptoms, and living happily ever after.
    Well that would support the autoimmune theory. On the other hand, if it's just one patient, perhaps he/she took quinolones and developed AS around the same time, but the latter was the actual cause of symptoms? Quite a coincidence, sure, but it is n=1.

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    It's all still considered idiopathic, and started when I was about 17 years old. Joint problems started about a year later, but I've never found a connection between the two.
    This doesn't feel coincidental to me although I don't have much to offer in the way of explanation.

    I think you are leaving some relevant stuff out of your medical history though, like the complaints and resulting diagnoses that led to your prescriptions for SSRI's and amphetamines.

    I'd be interested to see how you respond to a month of doxycycline.

    It would be cool if you could run a cytokine profile and see what your immune system is up to.

    Have you ruled out celiac disease / gluten intolerance (via a trial of a gluten-free diet)?
    Last edited by FunkOdyssey; June 8th, 2011 at 03:38 AM.

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    Quote Originally Posted by Ex Dubio View Post
    Yeah, benzodiazepines are kind of amazing for TMJ, but they're so amazing that I've largely stayed away. I've mostly managed with muscle relaxants, trigger point massage -- particularly that damn lateral pterygoid, magnesium, and ice and heat. Definitely better off now than I was, but it's still a bitch. Do you have bruxism too, or did TMJ spontaneously manifest?
    TMJ was spontaneous I guess, didn't really notice it until one time I was eating and it sounded like there was glass inside my jaw. I do get bruxism from certain things like curcumin. Lately I've been wondering if the sternocleidomastoid muscle could be the cause of my TMJ or some of my other symptoms, and I've added it to my massage routine. I'm also curious if you've ever had any really intense ear pain from the TMJ? That seems to be a real killer for me and when I tell doctors one my symptoms is extreme ear pain they look at me like I'm retarded or something. Although like you, the TMJ isn't my biggest concern, but what muscle relaxers work for yours? Klonopin just seems to work so much better than any of the ones I've tried like metaxolone (I think that's what its called) though like you say I can never really take it since its got such a crappy profile.

    I've also been wondering if the vagus nerve could play into this, but I don't really know anything on the matter and I pretty much stopped looking into these things a long time ago.

    Also, do you have any numbness or tingling in the extremities? I'm not asking because I think you have exactly what I have, but most doctors ask me this sort of thing right away, which is odd considering I usually have to tell them everything. So I figure it probably has some importance.

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    Quote Originally Posted by FunkOdyssey View Post
    This doesn't feel coincidental to me although I don't have much to offer in the way of explanation.
    My thoughts too. I've got a gut feeling the issues are related somehow. Hypogonadism/hypoadrenalism is often involved in autoimmune disorders.

    Also agree that a gluten sensitivity needs to be ruled out. Easy enough to figure out with a couple weeks of eating clean. An anti-inflammatory diet in general may be helpful.
    Last edited by cubbieblue; June 8th, 2011 at 04:11 AM.

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    Quote Originally Posted by FunkOdyssey View Post

    It would be cool if you could run a cytokine profile and see what your immune system is up to.
    What tests should be included in a cytokine profile?
    (IL) 4, IL-5, IL-10?

    Can the common lab run these?

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    Quote Originally Posted by Azx View Post
    Also, do you have any numbness or tingling in the extremities? I'm not asking because I think you have exactly what I have, but most doctors ask me this sort of thing right away, which is odd considering I usually have to tell them everything. So I figure it probably has some importance.
    Why do they ask you that? I'm missing the connection here.

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