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  1. #21
    Senior Member Azx's Avatar
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    Quote Originally Posted by cubbieblue View Post
    Why do they ask you that? I'm missing the connection here.
    Anytime I tell a doctor I have neck pain or shoulder pain they ask me about arm / hand numbness, I think usually they're looking to see if it's a pinched nerve in the neck or some other sort of disc issue, which I would guess is the most common, in the case of my neurologist he asked when he suspected I might have fibromyalgia. One of the things I immediately noticed with myself was that hand and arm numbness / tingling coincided with the onset of pain. which inevitably became chronic. I had though it was odd that my xrays and MRIs showed absolutely nothing wrong when I had the numbness, but this seems really common in fibromyalgia suffers, though I'm far from a fibromyalgia expert. In any case, my chronic pain is practically the defining aspect of my life so I am projecting a little of my own symptoms on someone like Ex Dubio when I see some similarities.
    Last edited by Azx; June 8th, 2011 at 04:31 AM.

  2. #22
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    Quote Originally Posted by cubbieblue View Post
    What tests should be included in a cytokine profile?
    (IL) 4, IL-5, IL-10?

    Can the common lab run these?
    Oh yeah, I'll provide some examples tomorrow from Quest.

  3. #23
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    Going backwords a little bit:

    When you were worked up for hypogonadism how was the TSH and T4/T3?

    Was Kallman's Syndrome looked for (you are not red/green colorblind are you?)

    Did you go through puberty OK?

  4. #24
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    Quote Originally Posted by Azx View Post
    Anytime I tell a doctor I have neck pain or shoulder pain they ask me about arm / hand numbness, I think usually they're looking to see if it's a pinched nerve in the neck or some other sort of disc issue, which I would guess is the most common, in the case of my neurologist he asked when he suspected I might have fibromyalgia. One of the things I immediately noticed with myself was that hand and arm numbness / tingling coincided with the onset of pain. which inevitably became chronic. I had though it was odd that my xrays and MRIs showed absolutely nothing wrong when I had the numbness, but this seems really common in fibromyalgia suffers, though I'm far from a fibromyalgia expert. In any case, my chronic pain is practically the defining aspect of my life so I am projecting a little of my own symptoms on someone like Ex Dubio when I see some similarities.
    Have you seen a good physiatrist? Just because you can't see it on imagery doesn't mean something structural isn't going on. May be worth looking into.

  5. #25
    Senior Member Azx's Avatar
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    Quote Originally Posted by cubbieblue View Post
    Have you seen a good physiatrist? Just because you can't see it on imagery doesn't mean something structural isn't going on. May be worth looking into.
    Good point, no I haven't, there aren't too many in my area but I may make a trip to see one. It is frustrating that most doctors look at the scans and think that's the end of it, or worse, some think that you're just making up shit and being a hassle or trying to score meds. One doctor looked at my scans and basically went "lol k thx, bye". Wrote a prescription for advil and told me to see him again in 6 months, freaking lol.
    Last edited by Azx; June 8th, 2011 at 05:06 AM.

  6. #26
    Senior Member djremix's Avatar
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    hi,

    if muscle relaxants do work to alleviate the pain, you may want to try the following combination

    pregabalin 150mg 3 hours before you sleep
    another 150mg 1 hour before you sleep

    4mg Tizanidine (brandnames Zanaflex, Sirdalud)or a similar strength and activity muscle relaxant right before you sleep

    if you find you have some insomnia,, 0.25 xanax would do the trick.

    for me tyhe above has solved almost all soft tissue pain, pinched nerves(took 2 days) and even wrist trauma(3 days).

    maybe worth a try in your case
    Currently remixing this old body!

  7. #27
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    Quote Originally Posted by Azx View Post
    Good point, no I haven't, there aren't too many in my area but I may make a trip to see one. It is frustrating that most doctors look at the scans and think that's the end of it, or worse, some think that you're just making up shit and being a hassle or trying to score meds. One doctor looked at my scans and basically went "lol k thx, bye". Wrote a prescription for advil and told me to see him again in 6 months, freaking lol.
    In my experience, there are way too many doctors like that. I feel bad for the people that don't advocate for themselves, because I can't even imagine where the hell I would be if I didn't learn that a long time ago.

    Ex,

    Has the tendonitis ever fulled healed or does there always seem to be some sort of damage done?

    Do you have to do anything to really precipitate the flare or do you find yourself wondering why the hell something hurts when you haven't done anything with it?

  8. #28
    Senior Member morganpmiller's Avatar
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    I know this suggestion is going to be looked at with skepticism and criticism, then again you did say you were open to more "fringe" treatments. Have you ever looked into platelet rich plasma or prolotherapy for treating your tendonitis issues?

  9. #29
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    Quote Originally Posted by morganpmiller View Post
    I know this suggestion is going to be looked at with skepticism and criticism, then again you did say you were open to more "fringe" treatments. Have you ever looked into platelet rich plasma or prolotherapy for treating your tendonitis issues?
    I really don't think much skepticism is deserved. I've done prolo and it seems to work. The problem is that whatever is causing the systemic tendon issues is still ongoing. For Ex it would be like throwing just a little bit of sand into the fire. If the damage remains after figuring out a way to treat the causative agent then I agree that prolo would be something to look at to repair that damage.

  10. #30
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    Anyway, I think looking at this DD and some of following posts it would make sense to:
    - get a lyme test done
    - start a gluten free diet and see how you feel after a month
    - seek another opinion by another rheumatologist, perhaps with AS as the prime diagnosis of interest
    - as far as the inflammation goes, you could ask the rheumatologist for a long slow taper of a corticosteroid. I have a feeling he will recommend this anyway. If not he will probably load you up with NSAIDs. It may be worth taking them, or an anti-inflammatory you agree with to see what happens.

    I think I'm going to give some serious anti-inflammatory use a good look here shortly...perhaps an NSAID combined with a decent dose of curcumin. I am really seriously considering trying a corticosteroid taper too, even though many floxxies tell me it could be disastrous.

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    Quote Originally Posted by FunkOdyssey View Post
    Oh yeah, I'll provide some examples tomorrow from Quest.
    Having looked into it further, Quest and Labcorp only have a subset of the cytokines of interest available which sucks. Labcorp does offer the valuable CD57 NK cell count, and the following useful tests are available through both quest and labcorp: TNF-a, IL-1beta, IL-2, IL-6, TNF-alpha, c3a, c4a, IFN-a.

    I'm going to see what else is out there as far as more comprehensive options (although the above would be an excellent start).

  12. #32
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    Quote Originally Posted by FunkOdyssey View Post
    Having looked into it further, Quest and Labcorp only have a subset of the cytokines of interest available which sucks. Labcorp does offer the valuable CD57 NK cell count, and the following useful tests are available through both quest and labcorp: TNF-a, IL-1beta, IL-2, IL-6, TNF-alpha, c3a, c4a, IFN-a.

    I'm going to see what else is out there as far as more comprehensive options (although the above would be an excellent start).
    What will high or low levels of these cytokines tell us? That there is an overactive/underactive inflammatory process? Or is it more complicated than that?

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    Quote Originally Posted by cubbieblue View Post
    What will high or low levels of these cytokines tell us? That there is an overactive/underactive inflammatory process? Or is it more complicated than that?
    At the very least, you'll learn whether something abnormal is happening with the immune system which could confirm suspicions that a mystery illness is autoimmune or infection related. At the most optimistic, some diseases and infections feature distinct immune signatures (as was recently published by Lombardi et al for XMRV/CFS, for example) that can point you in the direction of a specific diagnosis.
    Last edited by FunkOdyssey; June 8th, 2011 at 05:03 PM.

  14. #34
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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.
    For the sake of completeness, I'll just reiterate here that I agree completely, but finding that systemic cause is far from easy. It's doubly so because my symptoms are intermittent and are, though severely impairing at times, nowhere near as dramatic as the reports I hear of the most severe cases of systemic diseases like CFS, fibromyalgia, and Lyme. Not necessarily a totally appropriate comparison, but it makes me doubt the systemic angle at times. That said, I'm increasingly coming around to think there may be more here than I once thought.

    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.
    This is a fair point, but part of the problem is that I stopped interacting with a doctors in the traditional fashion years ago. For 3-4 years now, I've pretty much just requested different drugs and tried them out. I started SSRIs in large part because I was going through an extremely stressful period, and was starting to crack from the anxiety. I never received a formal diagnosis, though, and instead just asked to give one a try. That said, I've had anxiety issues since I was a little kid, though I never intended to directly address them, as they are oddly egosyntonic. Maybe a product of OCPD.

    I'd be interested to see how you respond to a month of doxycycline.
    I am indeed increasingly interested on this option. I'll be sure to post a follow-up if and/or when I get a chance to so.

    It would be cool if you could run a cytokine profile and see what your immune system is up to.
    This is a great idea, and something that I'm absolutely intending to do.

    Have you ruled out celiac disease / gluten intolerance (via a trial of a gluten-free diet)?
    This is a great question. Truthfully, I've been meaning to try a gluten-free diet for a few months now, but I've kept putting it off due to technical difficulties arising from the fact that my girlfriend is a pasta-loving vegetarian.

    That said, I am just about to go in for a blood test including gliadin antibodies (IgG, IgA) and anti-tissue transglutaminase, so perhaps that will be revealing.

  15. #35
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    Quote Originally Posted by Azx View Post
    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.
    Jesus, that sounds awful.

    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.
    Well, it's certainly reputed to be involved. Have you ever massaged that lateral pterygoid? It's one of the muscles that you pretty much have to work from the inside of your mouth. I found it to be one of the most heavily involved in at least my version of TMJ pain.

    I'm also curious if you've ever had any really intense ear pain from the TMJ?
    Really intense might be pushing it, but yeah I've definitely gotten some pain that feels like it's coming from the inside. That's the particular kind that seems to have benefited most from lateral pterygoid massage, for what it's worth.

    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.
    Ah yes, high-quality medicine.

    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.
    Benzodiazepines are effective, but they're my absolute last resort, as the rebound is awful. The only muscle relaxant I've had a good experience with is Flexeril (cyclobenzaprine); it was impressively effective. For what it's worth, the TMJ specialists at UCSF swear by cyclobenzaprine.

    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.
    No idea about this.

    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.
    Only in areas where I have joint pain, it only occurs during flare-ups. For example, I have lateral (medial? I always get them confused) epicondyle issues, and when that region gets inflamed, I'll get numbness, tingling, and pain in my 4th and 5th digits. But it's almost certainly due to inflammation from the muscle or connective tissue spilling over into the ulnar nerve.

  16. #36
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    Quote Originally Posted by cubbieblue View Post
    When you were worked up for hypogonadism how was the TSH and T4/T3?
    TSH was high, which is of course paradoxical for hypopituitarism, but I never got anywhere in terms of figuring that out.

    At the time of original TRT prescription, TSH was ~7, free T3 was 2.4 (2.3-4.2), and free T4 was 1.1 (0.8-1.8). About 6 months later, after being on thyroid replacement for the full six months, I was forced to stop it. (For stupid reasons that don't matter.) Two months after stopping, my TSH was 4.24 and free T3/free T4 were 2.4 and 1.2. Note that

    Given how quickly thyroid typically normalizes, at least when it's otherwise healthy, I concluded at the time that it wasn't just going to spontaneously improve, despite the contradictory nature of elevated TSH with hypopituitarism. And yet, so Hashimoto's antibodies, so no primary thyroid condition. Weird stuff.

    I have, however, changed thyroid medication around here and there over the past few years. I've noticed that flare-ups tend to coincide with times that TSH was approximately equal to 1 uIU/mL, in contrast to other times when it was undetectable. Still, this seems very unlikely to be related and is most likely coincidence.

    Was Kallman's Syndrome looked for (you are not red/green colorblind are you?)

    Did you go through puberty OK?
    Never did a work-up on this, but my sense of smell is fine, and puberty was not delayed. Seems very unlikely.

  17. #37
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    Quote Originally Posted by djremix View Post
    hi,

    if muscle relaxants do work to alleviate the pain, you may want to try the following combination

    pregabalin 150mg 3 hours before you sleep
    another 150mg 1 hour before you sleep

    4mg Tizanidine (brandnames Zanaflex, Sirdalud)or a similar strength and activity muscle relaxant right before you sleep

    if you find you have some insomnia,, 0.25 xanax would do the trick.

    for me tyhe above has solved almost all soft tissue pain, pinched nerves(took 2 days) and even wrist trauma(3 days).

    maybe worth a try in your case
    It's simply not that kind of pain. Muscle relaxants have worked well for me for TMJ and bruxism, in large part by reducing involuntary muscle movements, but even with months of taking them for TMJ, I never noticed any alteration of flare-ups or related pain.

    The problem here is that the shoulder pain, for example, is not neuropathy or neuralgia. It manifests exactly as tendinitis or tendinosis would, with inflammation and palpable heat when irritated, a strong guarding reflex, subjective sensation of instability, and progressively increasing pain with work.

    Even opiates aren't particularly useful here, since they do attenuate the pain, but do not remove the subjective sensation or weakness and/or guarding reflex.

    I do appreciate the advice, though.

  18. #38
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    Quote Originally Posted by cubbieblue View Post
    Ex,

    Has the tendonitis ever fulled healed or does there always seem to be some sort of damage done?
    There have been periods where it's been asymptomatic. Two years after the initial shoulder problems, I even managed to take up rock climbing for a few months before symptoms re-emerged.

    Do you have to do anything to really precipitate the flare or do you find yourself wondering why the hell something hurts when you haven't done anything with it?
    The latter, for sure. Only possible correlated factor might be repetitive use, but I can re-activate shoulder pain from typing. The biceps tendon isn't even supposed to be involved in typing.

    Quote Originally Posted by cubbieblue View Post
    I really don't think much skepticism is deserved. I've done prolo and it seems to work. The problem is that whatever is causing the systemic tendon issues is still ongoing. For Ex it would be like throwing just a little bit of sand into the fire. If the damage remains after figuring out a way to treat the causative agent then I agree that prolo would be something to look at to repair that damage.
    This, exactly. I've heard great things about prolotherapy, and have heard it's one of the only solid treatment options for tendinitis outside of eccentric exercise. However, not all of my injuries as closely resemble tendinitis as the injury in my shoulder, and even so, that would be purely palliative and unlikely to prevent recurrence.

    Still, it's something I may look into one day.

    Quote Originally Posted by cubbieblue View Post
    Anyway, I think looking at this DD and some of following posts it would make sense to:
    - get a lyme test done
    - start a gluten free diet and see how you feel after a month
    - seek another opinion by another rheumatologist, perhaps with AS as the prime diagnosis of interest
    - as far as the inflammation goes, you could ask the rheumatologist for a long slow taper of a corticosteroid. I have a feeling he will recommend this anyway. If not he will probably load you up with NSAIDs. It may be worth taking them, or an anti-inflammatory you agree with to see what happens.
    Part of why I'm so skeptical about the NSAID angle -- and even a COX-dependent inflammatory process in general -- is that my recent flare-up occurred in the middle of a 4 month period during which I was taking a whopping 3g of ibuprofen daily. If this is really something that NSAIDs are going to address in the slightest, that simply should not have been able to happen.

    But yeah, mostly this looks solid. Thanks for the advice.

    I think I'm going to give some serious anti-inflammatory use a good look here shortly...perhaps an NSAID combined with a decent dose of curcumin. I am really seriously considering trying a corticosteroid taper too, even though many floxxies tell me it could be disastrous.
    Good luck. I do hope your experience with NSAIDs is better than mine. That said, given the available evidence, I'd be inclined to advise you toward diclofenac or celecoxib if you can get them, since they seem to be the most GAG/MMP-friendly NSAIDs.

  19. #39
    Senior Member Azx's Avatar
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    What about topical anti-inflammatories? Have you tried anything with Cetyl Myristoleate in it? I don't think there is much evidence of its efficacy but there's a few topical creams I want to try, I admit even the sensory stuff like icy hot has its merits but its still crap, I think Cetyl Myristoleate seems less gimmicky. I guess I'm skeptical it will do anything when nsaids don't do anything but at this point..
    Last edited by Azx; June 8th, 2011 at 10:43 PM.

  20. #40
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    These are the three best ones I remember from that one study.

    Aceclofenac (brand name Hifenac)
    Tolmetin (brand name Tolectin)
    Tenidap (can't find the brand name)
    I have no idea if these are even commonly available, do you? Which one would you prefer, out of these and the diclofenac and the celebrex? I will ask for a script for one.

    My one friend with AS registered and is waiting to be approved so he can weigh in on this thread. He will probably say that his flares definitely did occur even on a decent dose of Mobic. Humira seems to completely squash the process though, compared to the NSAIDs which just suppress it a bit.

    Very interesting that when your TSH is almost completely suppressed you haven't had a flare and vice versa. THe first thing my rheumy did was put me back on T4 and keep trying to jack the dose up, because so many of his patients have responded well to that. My TSH is between 2-3 without T4 and my T4/T3 is in the middle of the range. T4 dosage over 50mcg makes me hyper and will cause some anxiety issues in me, so I can't go up as high as he would like. This only gets my TSH down to around 1.

    Have you ever tried jacking up your T & HGH to see what happens when you are having a flare? I've tried jacking up my T a bit (and I have been taking GHRP6+GRF since my reaction) to see what happens, and it doesn't seem to make a difference. Then of course we can revisit cortisol...but we don't have to do that now.

    What else are we missing?

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