Comment by computerdork | Hacker News Reader

Comment by computerdork | Hacker News Reader

Parent Full thread

My story is very similar. Have had tons of pain and muscle related problems for decades - played a ton of sports like you when i was a kid, and did a lot of physical risk-taking too (skateboarding, bmx-style biking taking them off jump-ramps...) and also had lots of injuries.

On top of chronic pain, I had (and still have but is greatly reduced) muscle clenching on the left side of my body - for some reason my body on the left side is clenching up, with this constant pulling on my head, pulling down and to the left. I also have severe TMJ, again on the left, and constant headache, light sensitivity, difficulty focusing and fatigue. It was truly horrible - imagine going through life with an extremely strong pull on your head and body. Your posture is messed up so physically, you look like a wreck, and sitting is painful as is standing. Also, you are just fighting this pull every second of the day. It never ends and you constantly have to think about it and ways to reduce the pull and the pain.

I worked with physical therapists and orthopedists for decades to try to figure out what was going on, but nothing worked. So about 8 years ago (I'm 50 now, so it was around my 42 birthday), I finally realized that I needed to look beyond the obvious causes of these types of problems, and explore almost everything, really ramping up the number and types of doctors I was seeing. Saw many types of docs: pain specialists, TMJ docs, gastroenterologists, ENT's (I have throat tightening and stomach issues too), neurologists...

Eventually, like you, found that many of my issues were from compressed nerves. And yeah, it's a struggle for you and the docs to find the right ones, but once you do, it makes a big difference. I'm not 100%, but I'd say I'm 60% there, and it's definitely changed my life, and is visible both physically and socially.

Of course, every person's body and causes of health-problems is different, so what helped for me may not help for you, but seems like you're on the right path. Keep searching, and would suggest being scientific about the process (this really helped me). I may write about my experience one day, so if you have any questions, let me know. And best of luck

How did you go about finding problematic nerves? I have had issues with nerve pain in my left leg for about 7 years now, did the full gamut of MRI s, bone scans, CT scans, ultrasound and saw about 5 different specialists including a neurologist and nobody has been able to help me.

Exercise definitely helps but it doesn’t actually seem to turn the nerves off, just desensitize them.

Sitting is very painful as I get pain in my sit bone and shooting numbness down my leg and all the way into my foot.

I have almost given up and accepted that I will be a cripple for the rest of my life. I live in British Columbia where the medical system is OK, but not near world class and all of the ambitious doctors have went to the USA.

I have a very bad bite which makes me suspect that my whole posture is messed up from the top down.

A good peripheral nerve specialist will direct the diagnostic nerve blocks, and he prefers you use his pain management guy who he trusts is doing the nerve blocks properly - so you're getting an actual proper diagnostic response from patient.

Dr. Tollestrup in Las Vegas would be my recommendation - I've done 7 surgeries with him so far. To note, every doctor I've encountered isn't perfect - in this case with Tollestrup, he himself hadn't heard of Eagle's syndrome before, arguably because he's a peripheral nerve expert - and the vagus nerves aren't considered peripheral afaik.

An "LVI Global" trained dentist may be able to help you find a proper bite, to create an orthotic that will allow your low jaw to relax/stop guarding. They try to upsell you to full mouth reconstruction, where they actually make money, although the daytime+nighttime orthotics they make for you aren't cheap either. Part of their protocol is also doing a head/neck CBCT scan - which is what incidentally found the Eagle's syndrome for me.

Agreed loceng, diagnostic nerve blocks is a key:)

There are many things that I and the doctors did to figure these spots out (and we're still in the process of locating a few last key spots). Oh, one thing though, I have a hard time giving this info out nowadays, as people often just take the info and run - And am not sure of your gender, but honestly, it's guys especially. Think it's an independence thing, need to feel like they did it all on their own, which I get actually. Yeah, I'm a guy and have this instinct too, but still doesn't change the fact that they take this info and then act like it didn't help at all...

... although, just read loceng's comment. He definitely has part of the path I found too, so this could be enough (diagnostic nerve blocks is a key). But if you're really serious about getting more info, than feel free to provide with a way to contact you. Thanks.

You describe exactly what I experience. I can't afford to see specialists so in the past 15 years, I have taken time to listen to my body in an attempt to figure it out. It's been a long journey of self-discovery and healing but the progress I have made have been worth it. I recently discovered that I had bruxism as a child and wonder if that caused the TMJ. I also started eating dates and that helps alleviate some of the tightness I feel on the left side of my body.

Sorry for the late response, your message was pushed fairly low in my HN threads.

Agreed, listening to your body is really important. And, as you may already know, a key it to ask: Is this problem a secondary symptom or the source? You're always trying to find the root cause of the problem.

For instance, (am not saying this is it), but often, TMJ is caused by problems lower down, as the head/jaw naturally move in association with the pelvis (just do a google search online). May want to try doing accupressure on the pelvic floor, hips, and hamstrings to see if this helps

Please don't take this the wrong way but I'm very curious if either of you have heavily modified your diet in an effort to remove part of the pain cycle? A low inflammatory diet might help from my own personal experience with diabolical pain.

No problem at all, great question because, as you know with your own pain, complex health problems are difficult to solve.

Actually yeah, have been basically eat a low-ish inflammatory diet for ~25 years. Ever since in my twenties, realized that I had some major health problem, took my general health very seriously, and have been eating healthy since then (eating a lot of fruits and vegetables, whole grains, and only eating meat/fish once per day). In addition, have been exercising regularly too. This definitely all helps, because I would have felt completely miserable if my general health was also bad.

But seems like when it's a damaged nerve, then diet, exercise, and massage/accupressure can only do so much. The nerve is always firing and basically an electric circuit that is always on. The method that was worked in my case is to find a way to shut off that circuit.

And glad you found a low inflammatory diet helped you:)

I have had a couple of bouts of very painful trigeminal neuralgia, which was successfully treated with carbamazepine (an anti-convulsant). The latest bout was most likely caused by Covid.

I just wonder if there is a drug which can reduce nerve sensitivity, although I guess this is a well explored topic for you.

I have not continued the carbamazepine. In both cases, I used it for about a couple of weeks, and then stopped using to test if there would be a flare-up (and there was none).

Good to hear the pain medication worked for you! Have tried a few myself. They work okay, but not well enough that I'd like to take them for the rest of my life - yeah, unlike your temporary pain, my unfortunately came back after stopping the drugs.

Nerve receptor sensitivity is controlled in a large part by the amount of Guanine Triphosphate (GTP) in the cell by sensitizing the G Coupled Protein Receptors (GCPRs). Guanosine[1] and Inosine (Purines) are added to foods as flavor enhancers, along with glutamate because they are excitatory.

I have an enzyme deficiency called Partial PNP Deficiency which slows the speed I can metabolized these low level purines. When I eat these food I have full body pain as well as mood issues.

They add these to nearly every processed food in forms as innocuously sounding as "malted barely extract".

I used to need drugs, now I just need to watch what I eat (and watch other things in my environment like stress).

[1] https://en.wikipedia.org/wiki/Guanosine_monophosphate [2] https://en.wikipedia.org/wiki/Disodium_inosinate

What is the treatment?

>> for some reason my body on the left side is clenching up, with this constant pulling on my head, pulling down and to the left. I also have severe TMJ, again on the left, and constant headache

@computerdork do you have a tongue tie/lingual frenulum or narrow airways/diaphragmatic dysfunction? These things can cause extreme issues with the fascia that lead to things presenting in such a manner.

If you’ve made it to teens/adulthood, it’s typically missed by fucking everybody in the medical profession.

hmm, I've always had issues with my tongue, it does not extend very far out of my mouth and my tongue is always clenched and pulling down and left as well. But it's hard to tell if this is because of tongue-tie or because if my throat muscles are tight.

I'll look more into both these, Thanks!

I had some issues from turning my neck to look at at a side monitor for extended periods. You're supposed to turn your whole body to avoid strain, but it's easy to forget.

Neck strain and tmj can be related as well from the overuse of muscles.

Reply on news.ycombinator.com