I’ve become a medical mystery and I don’t know how to effectively get help
post by CraigMichael · 2022-07-09T06:58:48.688Z · LW · GW · 10 commentsThis is a question post.
Contents
Answers 20 AllAmericanBreakfast 11 Valentine 10 pjeby 8 ChristianKl 2 Vitor 1 Humm1lity 1 LukeOnline None 10 comments
To put it very mildly, I’m in a really bad way emotionally because of this and I’m running out of ideas. Any ideas are welcome—specific to symptoms, or just generally how to deal with having a problem and not being able tot get diagnosis or treatment.
TL;DR: I’ve been having paresthesias and neuropathic pain over most of my body, but in shifting locations, since March 30th of 2022. (Paresthesia is like the sensation of a limb falling asleep, neuropathic pain is like that but most of a painful prick or electric shock-like feeling). I’ve seen my PCP, ENT, psychiatrist, neurologist, dentist, physical therapist and message therapist, but I don’t have a diagnosis.
Longer version: On March 30th I work up with a knot (TMJ) in my left jaw and paresthesia in my left leg. I also had dry needling done on my left hip that previous day but a professional licensed practitioner (someone who should have not done a lot of damage).
My PCP did a lot of blood tests (including b12, b6 and ferritin serum). All of these were normal. He able to feel the knot in my left masseter (jaw muscle). Referred to ENT, Neurologist, Dentist.
I got an acrylic night guard for the TMJ from my dentist.
ENT was kind of a jerk and was like “I don’t believe in TMJ treatments other than night guards—not sure what paresthesias are about.”
PT was most helpful. Found limited mobility C3-C5 on left side of neck and limited mobility L5-S1. Thought to could be Radiculopathy—which still makes the most sense. He did some massage kind of things to try for improve the mobility, but didn’t seem to make much of a difference.
Neurologist— suggested it was because of bad sleep hygiene and anxiety (both of which I have and take Rxs for). and x-rayed my neck. While I was bent in on the tight side the radiologist didn’t see anything worrying. Doesn’t think it’s radiculopathy, but I don’t know that he’s really done enough imaging to rule this out.
I have an appointment to see a TMJ specialist but can’t get in to see him until December.
Psychiatrist is nice about wanting to give me more medication, but doesn’t have many ideas.
Message therapist gave me a nice neck massage, but I don’t think it helped much.
I have a good relationship with my PCP, psychiatrist, physical therapist l and neurologist from previous issues. Have seen the ENT before and he’s always kind of been a jerk, but he must be a good enough doctor otherwise.
Circa 3-4 weeks ago, the knot in my jaw had healed and things slowly got better, to the point where the paresthesias almost went away, but they came back these last two weeks along with another bump in my left jaw.
No one seems to think the TMJ could be causing all of this, but it see seems to correlate. I don’t know neuroanatomy well, but the pain and paresthesias seem to correspond with dermatome areas, but I’m at a loss as to how all of my nerve areas could be that jacked up and different areas at different times.
Maybe related two things (1) I probably had a second case of chicken pox in March of 2020 or it was Covid with a varicella-like examthem which I saw some case studies published on back then. (I had chicken pox in like elementary school 30+ years ago, but for the examthem never got a solid diagnosis in March 2020 as to what it because everything was shut down and there were no Covid tests—it could have been Covid with a varicella-like examthem). It wasn’t shingles, it like was chicken pox all over again or something just like it. Got it after coming back from Israel—maybe a West Asian strain? I know that apparently can mess with your nervous system. (2) I had megavitamin b6 syndrome in mid 2019. It took about 7 months to fully recover, but did recover.
Okay… so… any ideas? What would be your next steps? Either specific to me or just in general in this kind of situation?
Any help truly appreciated.
Answers
There are a lot of unknowns for anyone replying here:
- Your level of compliance with the treatments your doctors have recommended.
- The amount of testing your doctors have done.
- Your level of trust that your doctors are wise practitioners who are thinking critically about the possible causes of your problem.
- The amount of resources you have available to pursue treatment.
In general, I'd focus on spending more time with doctors who have a clear plan of action to at least rule things out. For example, why not get all the imaging done until you can conclusively rule out radiculopathy? I'd also check in with yourself about whether you're fully complying with the sleep hygiene and anxiety treatments you've been prescribed.
If the type of provider who'd be the most logical choice for the issue itself (neurologist) .or for a specific hypothesis about the cause (i.e. a dentist for TMJ), is out of ideas, see another one. Or two. Or three. My dad went through 4 doctors who were going off in all kinds of zany directions, or who were just out of ideas, before he finally found one who diagnosed him with what was in fact obviously scabies. He'd picked it up from a lender mat at a yoga studio.
I have an appointment to see a TMJ specialist but can’t get in to see him until December.
That is a very long time to wait. Have you looked hard for a nearer-term appointment? Try telemedicine if that's a possibility, or travel to a different city if you must. Don't spend half a year waiting to start seeing a TMJ specialist when that's one of your main possibilities and this problem is severely impacting your wellbeing.
↑ comment by Maxwell Peterson (maxwell-peterson) · 2022-07-09T13:17:08.670Z · LW(p) · GW(p)
I agree with the encouragement to look harder for a sooner TMJ appointment. ADHD testing has similar waits now - looking in May, I was told everyone was booked up till September. But I lucked out, and the first testing doctor I talked to had just had some people cancel appointments, and nobody on his waitlist was responding, so I ended up seeing him a week later, in June, instead of in September. So there are opportunities for luck like this around. And this is without me looking out of state.
↑ comment by CraigMichael · 2022-07-11T17:24:20.648Z · LW(p) · GW(p)
One thing I wish I had made clearer in the original post—I'm concerned that I'm communicating with various doctors/practitioners in a way that makes me sound crazy or low-priority, but I also don't want sound contentious or obnoxious in a way that makes them dismissive.
To your first bullet, yes my PT did suggest laying with rolled up towel on one side of my neck for 30-60 minutes at a time. I have done this, but should be doing it more regularly.
To the second bullet, the neurologist ordered an AP (anteroposterior) and lateral x-rays. It's hard for me to tell if this are both necessary and sufficient, or if a CT would show more (e.g. looking at the Wikipedia article). The PT saw these and thought they were concerning because of the way my neck was bent when standing straight. The radiologist thought they looked normal. Blood tests performed were basic metabolic panel, vitamin b12, vitamin b6, CBC with auto diff, iron binding panel, ferritin serum/plasma.
Third bullet—I'm not sure what expectations are reasonable. I know, for example, neurologists are in short supply and maybe there's patients that are in worse situations than me? But I do have a high opinion of both my neurologist and PCP.
Fourth—I would rather no go bankrupt, but if this continues I know it will have an impact on my work performance... but I'd like to spend what resources I have not wisely. I'm thinking "yeah, just see doctors until someone comes up with an answer." But I'm not sure that's the most efficient route... but may be the only one available.
Replies from: AllAmericanBreakfast↑ comment by DirectedEvolution (AllAmericanBreakfast) · 2022-07-11T19:28:00.513Z · LW(p) · GW(p)
It sounds like a place to start is to aim for 100% compliance with the care you’ve already been prescribed. IME, the willingness of practitioners to engage and re-evaluate your treatment depends on their patient’s willingness to demonstrate strong efforts to put their suggestions into practice.
I would also say that even if your docs are good, if they have no actionable recommendations for you, then you have to choose to accept your condition as a medical mystery or to look for someone else. It sounds like in some cases, as with your neurologist, this is the point you’re at. You could ask them if they have further suggestions, and if not, look into another neurologist.
It sounds like you could still work on looking for a nearer term appointment with a TMJ specialist.
Replies from: CraigMichael↑ comment by CraigMichael · 2022-07-11T19:57:17.074Z · LW(p) · GW(p)
Okay, yeah, that's a really good point. I'm going to go for 100% compliance with whatever advice I get. I'll put it on my calendar and set a reminder and I'll make sure they know I'm doing this.
Going to look for another TMJ specialist, and based the other comments here likely an osteopath and orthopedist.
Replies from: AllAmericanBreakfast↑ comment by DirectedEvolution (AllAmericanBreakfast) · 2022-07-11T20:55:42.972Z · LW(p) · GW(p)
Good luck!
Somatic processing.
I have little idea what the mechanical root cause is in your case. But when something shows up sharply and widespread like this and it's whack-a-mole confusion from the medical system, the problem IME is very often stored trauma.
…by which I basically mean some subroutine in your brain is keeping some part(s) of your body in an awkward and not-very-great state as an adaptation to a threat that used to be in your life but doesn't apply anymore.
This can cascade into a bazillion other places as that subroutine keeps vying for resources and disrupting things in its efforts to keep you safe.
The way out is analogous to mirror box therapy, only it's usually more complicated. You update the subroutine to show it that the threat is gone and it can chill out. But the "language" of such systems is usually through the body, not words or thoughts. Hence somatic processing.
The medical system hasn't yet acknowledged that this trauma-induced health cascade happens. They're just barely starting to take seriously that maybe thoughts can affect the body enough that psychological interventions can fix physical problems. So any time the root problem is trauma, and any time that traumatic response is highly adaptive (like yours seems to be), the medical system gets flummoxed. Interventions don't work, or they work only a little bit and then a new problem shows up, etc.
The problem, in short, is that there's basically an intelligent sub-agent who's trying to solve what it thinks is a life-or-death problem. Attempts to just flat-out block its efforts won't go well to the extent that it can figure out ways to get around those blockades. You end up in an arms race with an internal agent.
I find Irene Lyon's explanations very clear and I think totally woo-free (although I've purged myself of woo allergy, so I might have missed something). You can peruse the ocean of resources she has on her YouTube channel. She also has a great 3-video overview that I heartily recommend; the cost is merely your soul your email address.
Luis Mojica is also quite effective. Many people find just listening to him to be grounding and to help learn this stuff. His podcast, "Holistic Life Navigation", has lots of really great and practical guidance. He leans a little more hippy/woo than some LWers might like… but his stuff works.
There's also Peter Levine ("Waking the Tiger") and Gabor Maté. They're classics in this area. Their models aren't up to LW standards, but they seem to be pretty effective people.
Good luck. I hope you find an answer that works for you.
↑ comment by CraigMichael · 2022-07-11T17:35:51.204Z · LW(p) · GW(p)
My psychiatrist has said recently that he thinks I may be having some kind of trauma response and recommended a trauma-focused therapy (that he doesn't specifically do, he's more for med checks and emergencies).
You interest me when you talk about woo allergies... In my model there's something like three camps. The first being people who adhere to POVs like those on sciencebasedmedicine.org and dismissive of anything that smells alternative, my guess is that their model is overfit and they have a lot of false positives when it comes to treatment. The second being ACX/LW types that are a bit more open-minded but evidence-aware. The third being like woo-heavy ways of reasoning that I try to avoid.
Do you see the camps similarly? I try to assign various woos reasonable probabilities and not dismiss them unnecessarily. But I also cautious not to get trapped in vortexes of woo.
Will check out the trauma resources.
Replies from: Valentine↑ comment by Valentine · 2022-07-11T23:19:17.894Z · LW(p) · GW(p)
Do you see the [woo] camps similarly?
Well… not by default. Your taxonomy makes sense to me at first pass though.
My experience is that the middle one you name isn't really a natural cluster. If I had to round LW to either sciencebasedmedicine.org or woo-heavy, there's no challenge. It's not even a little hard.
Part of the problem is that "woo" isn't actually a natural cluster either. It's a derogatory reference to models and methods that fall outside a certain paradigm.
But I do think that woo allergy is a coherent pattern. And yeah, LW isn't as bad with it as some circles — but it's severe enough here that it seems worth speaking to. It's hard to have a conversation in a context full of memetic allergic reactions, so offering a mild memetic antihistamine tends to go better.
Have you considered myofascial trigger points? For me, it's always myofascial trigger points.
Tooth sensitivity? Trigger points in jaw or neck. Headache? Probably neck. Finger tingly or numb? Trigger point in the chest, neck, or armpit. Ringing in the ears? Trigger point on the jaw or side of the face.
Every. Single. Freaking. Thing.
(Heck, the other day I had heartburn that turned out to be not directly related to a trigger point, but there were some trigger points involved.)
A trigger point is basically a "knot" in a muscle, that usually refers pain somewhere else because it's pinching nerves or blood vessels. (This is my layperson's understanding, I'm sure there are better/more correct explanations.)
Trigger points do not respond terribly well to standard massage or stretches. If you're not going "ow ow ow" from what you're doing to it, you're probably not doing anything to it. Direct, hard, and continuous pressure (i.e. invariant and unceasing) for around 60 seconds, using a tool specific to the purpose, or something like the rounded point of a broom handle generally works best for me, though I'll use my knuckles or thumbtip if I have to. (Mostly, though, I use one of the specialized tools I own for the purpose now.) You may have to do it more than once in a day, depending.
Anyway my point (no pun intended) is that if I had any weird sensations in my feet or legs, I would start by running my hands up my legs from the affected area looking for tender spots or knots, and apply pressure, trying to see which ones affect the sensation (either toning it down or making it worse).
I would also drink water, because my points are more likely to act up more when I'm dehydrated or hungry. I might also move and stretch.
Dunno if any of this will help you specifically. Also, if you haven't dealt with these things enough to know where they are, look for trigger point charts on the internet. Typically they'll show points and the general area where the pain (or other weird sensations) will be. (Rarely will the trigger point be inside the pain area!)
The key indicators for whether your problem is being caused by a trigger point are that you 1) have a tender spot in one of the places identified on a chart, and 2) pressing deeply on the tender spot makes a difference to the problem (either better or worse). (If it makes it worse while you're pressing, though, it'll usually get better when the knot releases -- which can take a minute or more.)
AFAIK, not a lot is known about how/why trigger points form, though in my case they seem to stem from being in a certain posture for an extended period. For a long time I kept thinking my dentist was doing horrible things to my mouth every time I went because I'd have all sorts of pains afterwards, and it turned out that holding my jaw open for a long time usually sets off some trigger points that then refer pain back into my teeth! Now I start working the points when I get home and don't have that issue any more.
While it might seem that "knot in jaw" and "weird feelings in legs" are unrelated, I personally find that if I am generally in poor health for whatever reason (incl. dehydrated, hungry, tired, etc.), I will often have trigger points going off all over the place. That is, global bad conditions like illness will make me more susceptible to trigger point-generated pains.
Anyway, hope you figure it out, and hope this is also helpful for anybody else who may be dealing with weird unexplained pains or sensations.
↑ comment by ChristianKl · 2022-07-09T11:53:17.940Z · LW(p) · GW(p)
AFAIK, not a lot is known about how/why trigger points form, though in my case they seem to stem from being in a certain posture for an extended period.
When fascia is in good health there's fluid flowing in them. Certain postures lead to the fascia having pressure on it in a way where fluid can't flow in them. Without fluid flow, fibrin gets formed which then makes the fascia hard and makes it stay in a state without much fluid flow.
The idea of trigger point massage is then a mix of breaking the fibrin and putting the fascia in a position where fluid flows through it by stretching it.
This description likely leaves out some of the involved mechanisms but I think stretches out a basic idea.
If you're not going "ow ow ow" from what you're doing to it, you're probably not doing anything to it.
I don't think that's the case, there are plenty of techniques that work effectively with fascia. It might even be that techniques that don't produce "ow ow ow" are more likely to produce lasting effects as they are more global and not just localized to one single spot. I think it's just that the "ow ow ow" techniques require less skill to apply.
↑ comment by Maxwell Peterson (maxwell-peterson) · 2022-07-09T13:14:22.994Z · LW(p) · GW(p)
I like the trigger point idea. OP should note too that there are injection treatments for trigger points: https://www.webmd.com/pain-management/guide/trigger-point-injection
↑ comment by CraigMichael · 2022-07-11T17:45:15.001Z · LW(p) · GW(p)
Do you find you're able to do this on your own, or do would you recommend a certain kind of massage specialist? I'm seeing some results of Google for myofascial release in my area. Does that sound right?
And thank you! I have a lot more to try now.
Replies from: pjeby↑ comment by pjeby · 2022-07-11T22:08:27.246Z · LW(p) · GW(p)
I've never been to a professional. It's literally "press and hold". I have a few items I use (a Knobble and a BodyBackBuddy), but anything hard with a rounded end (like the size/shape of the rounded tip on a broom handle) will do in a pinch. I read in one trigger point book the best ways to use your hands to reduce giving yourself hand pain, but tools are even better. For some trigger points, a hard rubber ball, a flat surface, and your weight are the easiest way to do it.
Finding the points isn't terribly hard either -- you know when you've found one because they're tender. (If it doesn't "twinge" or "twang" when you press on it, it's probably not a trigger point.) And you know if it's relevant if pressure affects your sensations. Tons of online charts show the spots where they're most likely to be and the regions they're most likely to affect -- and you need a chart because a lot of them are really not very intuitively located.
So you can literally figure out in maybe 30 minutes (including googling trigger point guides/charts and finding something to press with) whether there's any chance your problems are being caused by this, then decide whether you need a pro or just some tools.
The harder part is figuring out what lifestyle changes you might need to make (like drinking more water in my case, or posture, etc.) to reduce the odds of the points being created or set off in the first place. That's something you'll have to experiment with.
To be fair, there probably are better ways to deal with trigger points than just (almost literally) poking them with a stick, but poking them has the advantage of being fast and effective. If you have trouble pressing hard enough to squish the fluid out of them, or find yourself bruising due to bad angles or moving around too much, you might want to see a pro in order to learn better methods. Just be aware that "myofascial release" is not necessarily the same thing as trigger point treatment.
I agree with pjeby that the most likely cause is fascia related. Myofascial trigger message would be one paradigm to deal with fascia issues but it's also not the only one.
Depending on where you live there might be different professionals available and some of them practice according to a newer paradigm that's not well known. Osteopaths are generally a class of people available in many locations that are very helpful with fascia-related issues.
↑ comment by green_leaf · 2022-07-09T12:19:00.326Z · LW(p) · GW(p)
Watch out - according to Wikipedia, this sort of massage (if that's what you have in mind) isn't supported by good evidence - that doesn't mean it can't be effective, of course.
Replies from: CraigMichael, ChristianKl↑ comment by CraigMichael · 2022-07-11T18:03:38.098Z · LW(p) · GW(p)
I've been a Wikipedia editor with various degrees of activity for... checking now... wow... 16 years. I'm somewhat unresolved about the cadre of editors that work on all things "alternative medicine" there (mostly people with the userbox linked here). My current model is that they're not granular enough about various degrees of alternative, it's too binary the way they Like there's currently two buckets on Wikipedia (alternative and not-alternative) there should be a few buckets:
(1) evidence decidedly against--it's been studied and was found to be categorically harmful.
(2) evidence mixed--it's been studied and is a mix of helpful, harmful, or neutral.
(3) evidence low--it's been studied and evidence exists but is low on the hierarchy.
(4) literally no evidence--there's only mechanistic speculation or hypotheses put out by various people, but it's never been tested.
(5) good evidence exists--multiple large RCTs, meta-analysis, etc.
There are probably other relevant categories, but I think those would be an improvement.
Replies from: green_leaf↑ comment by green_leaf · 2022-07-13T09:51:15.401Z · LW(p) · GW(p)
There seems to be more - specifically on the massage, it says "is not supported by good evidence," which seems to be a different category from pseudoscience, but I agree with you.
↑ comment by ChristianKl · 2022-07-09T14:22:35.608Z · LW(p) · GW(p)
if that's what you have in mind
pjeby gave a recommendation for myofascial trigger message. I make the point that this is one way to approach the issue, but my recommendation was rather to go to an osteopath. Osteopathy as a field is not completely without peer-reviewed evidence, see for example https://pubmed.ncbi.nlm.nih.gov/33197571/
isn't supported by good evidence
There are plenty of medical issues for which there are no clinical trials that study techniques that effectively solve those issues. In those cases, searching for the key under the streetlights is often not a wise strategy.
Replies from: green_leaf↑ comment by green_leaf · 2022-07-09T17:37:55.560Z · LW(p) · GW(p)
You're right it might be a good idea to try it, but at the same time it's important for the OP to know it doesn't quite have the status of evidence-based medicine.
my recommendation was rather to go to an osteopath
Wikipedia also says the same thing about osteopathy. You're right in what you're saying, but the OP should have the additional information of the recommendation not being fully evidence-based medicine.
Replies from: ChristianKl↑ comment by ChristianKl · 2022-07-09T21:59:47.027Z · LW(p) · GW(p)
it's important for the OP to know it doesn't quite have the status of evidence-based medicine.
Why? Status doesn't say anything about whether or not the treatment will help the OP.
Replies from: green_leaf↑ comment by green_leaf · 2022-07-09T23:26:21.014Z · LW(p) · GW(p)
Why not?
Replies from: ChristianKl↑ comment by ChristianKl · 2022-07-10T07:58:26.348Z · LW(p) · GW(p)
It pays little rent to know that flossing is no evidence-based medicine.
Thinking in terms of status often leads to using in-group/out-group heuristics that don't help people solve their medical problems.
Replies from: green_leaf↑ comment by green_leaf · 2022-07-11T01:00:22.062Z · LW(p) · GW(p)
Thinking in terms of status
What I meant was that something that's not evidence-based medicine is less likely to work.
Replies from: ChristianKl↑ comment by ChristianKl · 2022-07-11T08:17:30.636Z · LW(p) · GW(p)
I routinely find it amazing how many people hold that belief without being able to provide evidence for it being true.
Somehow people get the idea that they can come through theoretical arguments and believe in authorities in a dogma that practicing medicine in a certain way means it's more likely to work. Those same people then apply that dogma to call for individual medical approaches needing different kinds of evidence to be accept then the way they accepted the dogma.
Replies from: green_leaf↑ comment by green_leaf · 2022-07-11T23:19:28.592Z · LW(p) · GW(p)
I had in mind the distinction between good evidence/not good evidence, or enough evidence/little evidence, etc.
Not a dogma, or practicing medicine in a certain way, etc.
Replies from: ChristianKl↑ comment by ChristianKl · 2022-07-12T11:27:46.499Z · LW(p) · GW(p)
A while ago there was a paper about how parachutes are not an evidence-based intervention. Since then a controlled study of parachute usage even found that they provide no significant benefit for people who jump out of planes to protect them from injury.
If you don't floss because flossing is not an evidence-based intervention, I would say that there is good evidence that you are making bad health decisions.
Jeremy Howick makes the point in "The philosophy of Evidence-Based Medicine" that the treatments where we have the strongest evidence generally aren't Evidence-Based Medicine.
Additionally, different research communities do research differently. Among the medical practitioners that are part of the establishment view of medicine, dentists are a community that puts little weight on Evidence-Based Medicine (EBM) and as a result, a treatment like flossing isn't well supported in EBM standards.
If you aren't believing your dentist when he recommends flossing on that basis you are making a mistake. You are making a similar mistake when you reject other research communities' knowledge because they don't conform to that form.
Replies from: green_leaf↑ comment by green_leaf · 2022-07-13T09:52:54.693Z · LW(p) · GW(p)
Since then a controlled study of parachute usage even found that they provide no significant benefit for people who jump out of planes to protect them from injury.
Wait, what?
Replies from: pjeby, ChristianKl↑ comment by pjeby · 2022-07-13T09:57:49.475Z · LW(p) · GW(p)
Wait, what?
"Opponents of evidence-based medicine have frequently argued that no one would perform a randomized trial of parachute use. We have shown this argument to be flawed, having conclusively shown that it is possible to randomize participants to jumping from an aircraft with versus without parachutes (albeit under limited and specific scenarios)."
Read it and weep. (Or laugh, whichever helps you sleep better.)
↑ comment by ChristianKl · 2022-07-13T15:47:01.224Z · LW(p) · GW(p)
The study is Parachute use to prevent death and major trauma when jumping from aircraft: a randomised controlled trial by Yeh et al.
Replies from: green_leaf↑ comment by green_leaf · 2022-07-14T02:44:42.788Z · LW(p) · GW(p)
I mean, that was really funny, but I don't see what a parody study has to do with the topic.
To get back to the topic, we could define evidence_based_1 as something that's recognized to be Evidence-Based Medicine, and evidence_based_2 as something for which there is good evidence.
I'm saying osteopathy and the recommended kind of massage are neither evidence_based_1, nor evidence_based_2.
You are saying that just because something isn't evidence_based_1, doesn't mean it's not evidence_based_2 (and presumably the implication being that osteopathy is evidence_based_2).
I checked this paragraph and I'm not quite convinced, but I think we've exhausted the topic at this point (in any case, the OP knows about it, so it's up to him to choose).
Replies from: ChristianKl↑ comment by ChristianKl · 2022-07-16T20:49:41.198Z · LW(p) · GW(p)
I mean, that was really funny, but I don't see what a parody study has to do with the topic.
It's a summary of the available evidence. Studies often fail to investigate what you really want to know for all sorts of reasons by having a study environment that differs from the way the technique is practiced in the real world.
I checked this paragraph and I'm not quite convinced, but I think we've exhausted the topic at this point (in any case, the OP knows about it, so it's up to him to choose).
That paragraph is written in the same spirit of summarizing the evidence as what I wrote about parachutes. Both are straightforward summaries of the published evidence without engaging in deeper thought about the underlying mechanisms.
The paragraph also does say "moderate-quality evidence that OMT reduces pain and improves functional status in acute and chronic nonspecific low back pain".
It's in the nature of looking for evidence that you will be able to write metastudies about thousands of different things for which there's no evidence that treatment X helps. Aspirin (another treatment for low back pain) also doesn't help with asthma. That in no way implies Aspirin not being EBM.
↑ comment by CraigMichael · 2022-07-11T17:50:32.040Z · LW(p) · GW(p)
Thank you! This is one area where I'm going to follow up.
Would any DO be a candidate here, or would there be a specific feature you'd look for?
I have recently been diagnosed with fibromyalgia, and your symptoms sound like they might be caused by this, or other related things like chronic fatigue syndrome or chronic pain.
You didn't specify the kind of sleep problems you have. Pointing towards fibromyalgia would be difficulty "turning off", not being able to fall asleep due to tension/anxiety, and waking up unrefreshed even after getting several hours of sleep.
Do you feel unusually fatigued / sleep deprived? Frequent headaches? mental fog? worse at concentrating lately? short temper?
For background info, I've had this condition at a low level for all my life, but it only erupted into a major issue recently, due to taking a covid vaccine. It is known that both viral infections and vaccinations can trigger long-term issues like this.
↑ comment by CraigMichael · 2022-07-11T18:13:44.119Z · LW(p) · GW(p)
Do you feel unusually fatigued / sleep deprived? Frequent headaches? mental fog? worse at concentrating lately? short temper?
I've had sleep issues since a traumatic event around 2012. Short temper, yes, but mostly because I'm worried about this and it's kind of exhausting. Not many headaches to speak of. Concentrating has been an issue, but I think that's because my body feels weird and it's distracting.
It could be, though. I'll discuss it with my PCP next time I see him. It's mostly a diagnosis of exclusion, yeah?
Replies from: Vitor↑ comment by Vitor · 2022-07-11T23:15:34.397Z · LW(p) · GW(p)
Yes, it's mostly a diagnosis of exclusion. But Bayesian evidence starts piling up much sooner than a doctor is willing to write down a diagnosis on an Official Piece of Paper. However, there are some tell-tale signs like the myofascial trigger points mentioned by others, heightened pain when touching specific bones (e.g. the vertebrae), and other specific patterns how the body reacts to stimulus. This is the domain of rheumatologists.
Are your sleep issues stress-related? Like jumpiness, unable to settle into the relaxation of falling asleep? What I'm getting at here is that there are two broad classes of sleep issues. In one, you have trouble falling asleep, in the other, your sleep is not restful because you're too tense, in a way that persists through the process of falling asleep. The latter is really really bad, as it leads to chronic sleep deprivation because your body isn't getting good rest, even though you "put in the hours".
The thing with psychosomatic symptoms is also that there's a feedback loop between the pain (or weird sensations), and your mental state. As you get habituated to focusing more and more on those sensations, your brain learns to bring them up to your conscious attention more eagerly. This results in pain sensitization. Even in a situation where let's say the pain has a clear physical cause that has been corrected, the pain can persist. The original injury was just the trigger of the problem.
It might be that your collection of symptoms is actually pain that may be mild / weird enough that you don't recognize it as such. An easy way to test this is to take a standard dose of an over-the-counter painkiller and checking if you feel any different an hour later.
PS: feel free to send me a message anytime if you want to talk in more depth.
Hi CraigMichael,
What kind of knots is it by the way? Is it swollen lymfnodes?
And regarding the jaw area, it is a very sensitive area, I guess in different ways to different people. I learnt that I really grinded my teeth, had really tight muscles in the jaw and because of stress, but also as a result of units earbuds or just headphones in general, that pushed against the ear.
This was very surprising to me, as it was neither very painful or a lot of pressure.
So I guess I am saying that out a wish to comfort you, and maybe it might be useful to you too.
Except for that I wish you all the best, and there is already a lot of support on this comment section.
↑ comment by CraigMichael · 2022-07-11T18:09:56.262Z · LW(p) · GW(p)
With only Google-knowledge of jaw anatomy, I don't think it's a lymph node, but I could be wrong. Feeling it now (it's better than when I posted originally, but is still fairly sore) it's feels like it's right on the masseter muscle.
Looking at the image, it's not near the lymph nodes identified. https://www.medicalnewstoday.com/articles/325947#what-are-they
Feels like it's right on the masseter as shown mid-article here:
And thank you for posting! Every idea is a good one for me here in terms of feeling less hopeless.
Replies from: humm1lity↑ comment by Caerulea-Lawrence (humm1lity) · 2022-07-11T18:57:36.057Z · LW(p) · GW(p)
Yeah, that would be highly irregular, but it seems to have happened. If you google masseter and lymf-nodes it shows up - but I am not able to read journals, so maybe I missed something. But it seemed more gradual not so sudden like yours.
Yeah, I was hoping for it to be hopegiving. And also, it did take me a long while to notice the connection. The body doesn't really come with a written manual, so when things go awry it is hard to find out why; and I was surprised how much of a negative impact something like sleeping with earbuds, using earphones and the like had on how much I clenched my jaw. So, maybe it can help you in some way to listen, even though it might take a long time to understand what your body wants.
I do hope you find something that is useful, as chronic pain is no joke. And my reply is a way of normalizing it too, you're not alone in wanting a manual, preferably digital, nicely organized, with images, do-it-yourself tips and who and where to get help if you need a professional hand.
With regards to the symptoms you mentioned, that are far from the face, for years I had this weird sensation of time slowing time and some intense deja vu, and also some kind of dryness in my mouth, but subtle. Since it happened seldomly, but regularly, I felt into it - and lo and behold - I found out something that matched:
Biting a pillow.
I'm not sure why, but it is a terrible sensation, even as a grown up. So, I assume I did that for whatever reason as a child, and it stuck in my system. After I found out why, and bit a pillow for reference, it stopped happening. Now I just don't do it, because it really sucks.
Best wishes.
IMHO, modern medicine is quite limited.
Our body and mind are super complex, and interconnected in a billion ways. Psychological stress can create physical issues. Physical issues can cause psychological stress. Your diet can cause autoimmune problems. Lack of exercise can cause disease. Even things like lack of cold exposure seem to be able to generate massive problems.
We evolved to be suited to a hunter-gatherer environment, where we mostly lived active outdoor lives and always ate fresh food. Then we lived in pre-industrial agrarian societies for thousands of years. Our modern industrial environment is brand new and causes a lot of unexpected new problems.
You mention anxiety, and taking medicine to treat that. Would it be possible to treat your anxiety without medicine? Is your job or something else in your life causing the anxiety, something that a lifestyle change could fix?
↑ comment by CraigMichael · 2022-07-11T18:15:22.695Z · LW(p) · GW(p)
I switched jobs recently, and it is stressful. So there's that. But with the kind of pain and stuff it feels like it has to be more than just stress, although stress could for sure have been a distal cause.
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comment by Nanda Ale · 2022-07-09T07:33:05.644Z · LW(p) · GW(p)
I had never heard of this condition, but your previously diagnosed 'Megavitamin-B6 syndrome' symptoms line up so well with your current symptoms it seems hard to rule out some kind of B vitamin issue.
The other thing that randomly came to mind is gout, which isn't always super localized to a single joint.
The sudden onset is strange, is there any new medication you took even a few weeks earlier?
There's also the brute-force test for autoimmune conditions, which is take something like prednisone and see if it immediately resolves the issue. It's not conclusive because prednisone will also make a sprained ankle or a herniated disc feel pretty good just by nuking all the inflammation. But it's a data point.
Replies from: CraigMichael↑ comment by CraigMichael · 2022-07-09T17:52:30.562Z · LW(p) · GW(p)
My PCP thought the same thing. Fasted b6 was normal and I check everything for b6 now. No new medications before it started.
Gout and autoimmune are good ideas, will follow up on those, thanks!
comment by Adam Zerner (adamzerner) · 2022-07-09T07:13:08.912Z · LW(p) · GW(p)
I really like the content on https://www.painscience.com/. Perhaps it'd be a useful resource for you.
You could also try throwing money at it on https://www.crowdmed.com/.
Best wishes!
Replies from: CraigMichael↑ comment by CraigMichael · 2022-07-09T17:48:32.664Z · LW(p) · GW(p)
These are excellent, thanks!
Replies from: adamzerner↑ comment by Adam Zerner (adamzerner) · 2022-07-10T03:18:49.219Z · LW(p) · GW(p)
That's great to hear!
comment by shminux · 2022-07-09T07:44:33.541Z · LW(p) · GW(p)
Not a doctor by any means... Sorry you have to go through this, sounds pretty terrible. Anecdotally, long covid can give you autoimmune symptoms, especially if you had some other low-key autoimmune issues already, and the symptoms you describe certainly sound like it could be an autoimmune reaction. One way to test it might be to try some of the medications used to control MS, lupus and other chronic autoimmune diseases and see if they make a difference. Of course, if you have an ongoing active viral infection these can backfire, so... talk to your doctor.
Replies from: CraigMichael↑ comment by CraigMichael · 2022-07-11T18:17:08.293Z · LW(p) · GW(p)
Thanks for this! I'll ask my PCP the next time I see him (hopefully soon here).
comment by ambigram · 2022-07-10T05:25:42.741Z · LW(p) · GW(p)
I find Feldenkrais generally useful for releasing tension. There are exercises which are targeted at jaw/facial tension like this (tried this once, worked for me), but I find that exercises which release tension in my hips tend to also release tension in my jaws, so looking at exercises for hips may work as well. I've enjoyed working through the exercises in this channel.
Replies from: CraigMichael↑ comment by CraigMichael · 2022-07-11T18:18:09.429Z · LW(p) · GW(p)
I hadn't heard of this before, thank you!
Replies from: ambigram