There are a lot of unknowns for anyone replying here:
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.
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.
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...
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.
This sounds similar to John Sarno -- are you familiar with it and do you know whether the approaches are substantially different?
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 ...
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.
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...
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
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.
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.
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?
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.
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.
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?
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.
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.
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?
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.
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.
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!
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!
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.
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.
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.