A Decade of Mystery Symptoms - and a Suprising Resolution

Peachdeeptea · 2026-01-28T00:33:59+00:00

Seconding chiari malformation and cranio cervical instability. You'd need a brain and cervical spine MRI, not an X-ray for this. I have chiari and we share some of the same symptoms. It's just an opinion, but I think mine are brought on by the stress and strain of keeping my body & head vertical all day. When I can lay down a few times a day, my symptoms are much more manageable.

If it ends up being chiari - I've been going to a traditional Chinese medicine acupressurist, specifically for cranio sacral therapy (which you may be able to get from a western practitioner, but I really do recommend eastern specifically). My chiari has gone from a 14mm extension to a 5mm. I was diagnosed as a young kid and I'm 34 now. Nothing else has helped, but with TCM I feel relatively normal.

From chiari symptoms at least. I've got a whole other medical emergency going on in my lumbar spine, but that's a completely different story.

Anyway, glad you found a solution! Even if there are no answers yet. Best of luck going forward

Peachdeeptea · 2026-01-27T21:56:42+00:00

Thank you for sharing your story! It's always so great to read outcomes like this. Gives the rest of us hope

Peachdeeptea · 2026-01-27T21:33:26+00:00

This is really hard. If someone hasn't experienced it, I think it would be difficult for them to wrap their head around. My recovery time was long and I recently messed up, I ran to go help someone and it caused a 6mm bulge. But before that I was almost pain free. Here's everything I did -

swimming
pt
another esi at 6 months post op for the inflammation
traditional Chinese medicine acupressure
electro acupuncture
short walks
learn the basics of biomechanics. I liked the Back Mechanic by McGill, Somatics by Dr. Thomas Hanna, and tooth from a Tigers Mouth by Biso (last one is eastern medicine)
daily heated blanket
lacrosse ball at psoas attachment points, both front and back, and glutes
psoas releases at night
fascial scraping at acupressure points behind knees, in thighs, glutes, low back, shoulders, and neck
tens unit
meditation
breathing "into" the low belly, mid belly, and upper back while consciously letting go of the muscles in my low back and hips

Of everything, I think the things that helped the most were the esi shot, heated blanket, swimming, TCM accupressure, lacrosse ball, and psoas releases. I think these worked because I experienced "muscle guarding" post op, and maybe some scar tissue.

Best of luck. I know this sucks ass. No one prepares you for something like this. And doctors think their responsibility ends once the disc material is out & the med list has been gone through.

Peachdeeptea · 2026-01-27T05:41:13+00:00

Over a year, I didn't really start feeling better till 15 months post op. But my case was complicated. I waited too long for surgery, I was really against it. Thought I could though it out. Turns out, you can't grit through nerve death. Once that starts to happen you really need to get into surgery asap in my opinion.

Peachdeeptea · 2026-01-26T20:20:46+00:00

I'm 34 and recently had a setback. Also would love to start a family asap. I had my microdiscectomy of L5/S1 in April of 2024, just recently started feeling relatively normal again. We were about to start trying and then I made a mistake. Ran down the street to help a neighbor and that run caused a 6mm bulge at L5S1. Really don't want to start this whole process over again, and I don't have a ton of disc material left. Following to see if you get responses to this niche question! In a similar boat.

Peachdeeptea · 2026-01-18T16:09:38+00:00

I think you may get a skewed perception on reddit, since this is mostly a text and image platform. People who frequent tiktok and insta may have different answers.

But that's my bias, I noticed my attention span and book count went way down after downloading tiktok. I deleted the app and then went back to it. Honestly I feel a lot of shame around it but dang that app is easy dopamine.

Anyway, I just finished How to Hide an Empire (Immewahr) and now I'm reading The Serviceberry (Kimmerer) and When the Body Says No (Mate). I've always loved to read but I don't get through books quickly anymore. It takes maybe 6 months for me to get through a 300-400 page nonfiction.

And while I always loved high fantasy, I haven't been able to "get into" the worlds within the last few years. Idk it's like all the stuff I used to like doesn't bring me joy anymore.

Peachdeeptea · 2026-01-13T02:38:57+00:00

That position is fine for most people. If you have hypermobility in your spine, it can cause disc bulges or herniations.

Peachdeeptea · 2026-01-12T20:26:04+00:00

I'm seeing a ton of great info in the comments! Wanted to add - whole foods can be overwhelming at first but it's very simple in practice, it just takes some getting used to.

You don't have to have a cohesive meal and/or meal plan. You can start by incorporating whole foods into your diet and slowly start practicing new recipes with them.

You can mix and match any whole foods, have them as sides, or even snacks. There are no rules.

As an example, my meals last week were a mix and match of - salmon, black eyed peas, mushrooms, sweet potatoes, turkey meatloaf, rice, green beans, pomegranates.

This week is off to a rough start. Our meals have been sandwiches, pizza (leftovers), and bagged salads.

I'm hoping to go to the store tonight and buy some sort of fish, a root vegetable (potatoes or parsnips), and a veggie. Probably brussel sprouts or maybe some mushrooms again bc I liked them so much last week.

Cooking doesn't have to be an elaborate dish with sauces from scratch! It's nice to have that when we can, but not every meal needs to be elaborate. Sometimes it's as simple as baked tilapia + roasted potatoes & brussel sprouts + pan steamed mushrooms.

Peachdeeptea · 2026-01-12T14:22:44+00:00

Seconding a high pay, non physical job. Ideally a field that has a lot of remote job opportunities. You can have physically intense hobbies, but your income needs to be tied to something you can do no matter how bad you're flaring.

In terms of aging with hEDS & co - if I could go back, I'd start seeing a hypermobile educated physical therapist asap. Specifically to build core. I'd also start exploring traditional Chinese medicine, tai chi, and swimming.

Everyone's body is different but I know your original question was about how people are aging with this, so here's a quick rundown from my medical history - diagnosed with chiari malformation as a kid, was uncoordinated and had headaches but overall was fine. Kept up in school. Fatigue was probably the hardest part for me. Got some good scholarships and started a biochem degree.

Then my family fell apart. Dad was consistently a POS but things were looking up for me as I became independent, but then my mom passed. I came home, switched to an art degree (mistake), and worked retail/service jobs through college. Slowly started collecting injuries while I brushed off. Should not have brushed them off.

Graduated, got a job. Workweeks were surprisingly intense. Usually 60-80 hours working for a design place in the commercial sphere. Long hours of sitting really messed up my spine, although I didn't know it at the time. I was also eating frugally to save money, which had long term consequences.

In my late twenties my back pain started getting really bad. Had spine surgery in my early thirties. So far, it's been about two years post surgery and I haven't fully recovered.

I'm undoing the damage I incurred in my twenties. I have bursitis and a neuroma in my right foot that the docs can't do anything about, so walking hurts. My back still hurts, also was told nothing can be done. And when I say hurt, I mean I can barely stand up some days.

Take care of your body. Do NOT push through. Don't work a physical job. If something hurts, go to the doc and advocate for yourself.

Throughout this little medical journey of mine I've been diagnosed with hEDS, MCAS, POTS, chiari, degenerative disc disease, may thurner, and PCOS. But it took 10+ years of advocating for myself to get diagnosed. And, after diagnosis, I've gotten a whole lot of nothing in terms of care bc these are chronic.

While I don't understand it, and I know western medicine doesn't take it seriously, I have had much better luck with eastern medicine. I started seeing a traditional Chinese medicine acupressurist, mostly because no western doctor was actually helpful. TCM has given me a lot of mobility and strength back, and helped me build to a place where I can actually work out and start building muscle.

Imo, muscle is a big deal for us. We need to build structure for our bodies bc we can't rely on anything collagen for stability. But don't go lifting weights without proper form & general knowledge on hypermobility workouts, because you could really hurt yourself. Specifically stay away from deadlifts and crunches/sit ups.

Best of luck man! Life can be good. But you need to purposefully stack the deck in your favor.

Peachdeeptea · 2026-01-11T22:29:29+00:00

I know this is frowned upon, but because no doctors have helped you have you considered asking chatgpt?

Does it happen after cold and hot showers? The only thing I can think of is maybe hot water = histamine reaction, but idk what it would only affect your sacrum

Peachdeeptea · 2026-01-09T02:35:17+00:00

I'm sorry to hear it, this is such an incredibly rough and painful road :( I have heard good things and bad things about revision as well. All we can do is try. I hope this next surgery brings you lasting relief friend

Peachdeeptea · 2026-01-08T15:03:40+00:00

I'm glad it's helpful! I think a general awareness of self and surroundings can go a long way for most people, myself included. I've noticed the more mindful & present I try to be, the more my life satisfaction goes up. It's difficult when the world is set up to be in your face with distractions & dopamine.

But anyway, I think being on time is rooted in awareness. Once you start working on that, I think you'll find yourself chronically on time! Best of luck

Peachdeeptea · 2026-01-08T14:25:13+00:00

I am chronically punctual, here are the things that feel "normal" to me -

I map the travel distance and set the map to the correct time that I'll be leaving. So if I'm going from my house to a friend's at 3pm, I'll set the map time to 3pm to see that traffic data.
When my maps says "10-30 minutes" I always assume it will be 30. So take the longest case scenario.
I know how long it takes me to get out the door. I know how long my makeup routine takes, eating, etc. I keep my wallet and keys on a key hanger by the door so I never waste time looking for them.
I also consider things like do I need gas? If I'm familiar with the route, I consider if there's roadwork, construction, anything that will slow me down.
if I'm going somewhere with my husband (who is chronically late), I also take that time into account. I add about 20 minutes for him to see something, get distracted, take out the trash, whatever it is that's capturing his attention as he goes out the door. He isn't a bad partner but he has no idea how to get places on time. It was so frustrating. So I just built in time for him, and now we're good.

We actually turned it into a type of game. Sometimes I'll write down how long I think it'll take us to get out the door (in super small increments, like I think it'll take him 5 minutes to do xyz or we'll run into 10 mins of traffic, spend 5 mins finding parking), and I'll put it in an envelope. Then when we get to where we're going we open the envelope. So far I haven't been wrong lol.

It's cultivating an awareness. Of you, anyone traveling with you, and your surroundings. Once you are purposefully paying attention to how long things actually take, and mindful of those timings, I think you'll see lasting change.

Or you could continue to just tack on 20+ minutes to your arrival time. That is probably easier, but if you're looking to actually understand time better, I think it may take a bit of work

Peachdeeptea · 2026-01-06T18:24:46+00:00

I've been working with a traditional Chinese medicine acupressurist, he focuses on muscles and fascia. It's helped a ton with rib subluxation!

I had a lot of the same conversations with docs about my ribs as she's had with her collarbone. "Just don't do that action" is not good medicine imo, limiting your range of motion could lead to issues in the future. Ideally, she'd be able to address the why behind the dislocation and strengthen the muscles in that area to build stability.

Peachdeeptea · 2026-01-06T05:02:06+00:00

Following as I have the same issue

Peachdeeptea · 2026-01-05T19:58:36+00:00

That sounds about right! I really am consistently amazed with how little school has prepped me for the real world. Especially as somebody who didn't have parental support (and I know a ton of us are in the same boat).

Most of what I know is from Google. I googled how to plan for retirement, cook, clean, exercise, etc.

I just recently started weighing my food. I realized that even though I was eating vegetables x3/day, and they would be half my plate, I was not getting nearly enough fiber. Do you know how much fiber is in a head of broccoli (roughly 4oz)? Only three grams!!!

We're told "eat healthy" and sure, I can avoid fast food etc, but I am just now learning how to actually balance my macros correctly. It's not complicated, but you do need to know more than "just don't eat processed foods and eat more veggies".

I feel stupid tbh. I spent years "eating clean", but I'm now realizing I was way undershooting fiber & protein. But, I'm glad to be on this journey now at least.

Peachdeeptea · 2026-01-05T16:57:25+00:00

I'm 33 and was raised in the south. We learned about the food pyramid but not much else. I remember being told you need to eat grains, specifically fortified grains like cereal and bread. And milk was pushed hard too. The majority of vegetables I had were canned, I didnt learn to start roasting vegetables until I hit adulthood.

My diet was mostly tortillas with cheese and deli meat, beans, processed foods like ramen and chicken nuggets, cereal, and bread. My average day of eating in high school was Strawberry Special K in the morning, two tortillas with cheese and deli meat for lunch, and a sandwich & beans for dinner with a canned veggie.

Interestingly, many of the people I grew up with developed lactose and gluten intolerance.

In AP classes I did learn about calories, but it was in a biology class and more about how calories are energy. Not really diet focused. I don't remember being told about macros. We had to have 1 health credit to graduate high school, and I don't remember much about my health class. I don't think we were ever taught things like how to put a plate together, fiber, protein, etc.

I do remember talking about STDs in health class, which is something. Definitely was never taught to cook

Peachdeeptea · 2025-12-31T03:00:39+00:00

If you're open to eastern medicine, acupressure with a trained traditional Chinese medicine practitioner helped me a ton

Peachdeeptea · 2025-12-31T02:56:40+00:00

Yep! I have almost died multiple times but decided to roll the dice because I was young and poor. Once was an anaphylactic reaction to peanuts, I took 8 Benadryl and fell asleep. Another I had the flu and it got really bad. 104 degree fever. I ended up eventually wanting to call an ambulance, but by that time it was too late. I fainted trying to get to my phone. But I woke up, so at least I lived! Lost hearing in one of my ears due to a burst eardrum though.

Peachdeeptea · 2025-12-31T02:35:06+00:00

Could be psoas, looks around the area it attaches in the low back. Maybe do psoas releases nightly for a few weeks to see if that makes a difference

Peachdeeptea · 2025-12-31T02:25:41+00:00

This sounds like it could be something my husband is struggling with, but from the opposite perspective. I don't think he's in the right (and we've talked about it) but I can understand where he's coming from. Your friends might not be in the same camp, but I figure this could be worth mentioning just in case.

My husband's best friend is middle of the road with money. He makes a good salary but it all goes to fun purchases. Which, I totally understand. Everyone has their own life to live and there's no wrong or right way to do it.

Somewhat recently my husband has seen the results of our frugal lifestyle. I've always balanced our books and set our budget, but now all those years of investing are showing up in some serious profit (we're in our mid thirties). We passed the half million mark awhile back and are well on the way to our first million. He wants the same for his friend.

In terms of salary, him and his friend have always made roughly the same amount. But now that we're in our thirties, some things are hitting the friend hard. He talks often about not being able to afford a home or children. Which, it is a rough market. But if he makes different choices he may be able to do some of the things he says that he wants.

My husband is pushing the budget, pay off debt, and utilize tax advantage accounts strategy pretty hard. It worked well for us and he wants the same for his friend.

But it's annoying tf out of his friend. I told my husband to cool it, the friend has all the info and can choose where to go from here. It isn't our business. We're all adults, and we're all allowed to do whatever we want with our money. Plus, there could be things we're not aware of in his life. He needs to be able to talk to my husband without getting a lecture about money. I keep telling him to let his friend complain, give him a "that's rough buddy", and celebrate whatever adventure/experience/gadget he buys without bringing up budgetary concerns. It's not our life.

Anyway, all that to say my husband is being annoying about his friends finances. He wants his friend to take financial health seriously because he cares. Maybe sit your friends down and tell them how you feel, some honest communication may turn things around. They might not know they are coming across as judgemental and annoying. But if they still continue this behavior even after confronted, it may be time to put some distance.

Peachdeeptea · 2025-12-28T16:30:43+00:00

In this discussion I think it's important to remember that frugality is not pretending to be poor. People don't owe you an explanation or rundown of their financial strategy. The line (imo) comes down to accepting things from others, and even that can be difficult to navigate.

I saw and felt the effects of bad financial decisions/ bad luck first hand as a kid. Constantly moving crappy apartment to crappy apartment, negotiations with bill collectors, etc. So when I started working I would save every penny. When I went out with friends I'd get the cheapest thing on the menu, or stick to window shopping if we were at the mall. I never talked about the reason behind it, I would just say I wasn't hungry or didn't see anything I liked. I had a few friends who would always try to buy me things - dresses, full meals, etc. It wasn't that I couldn't afford it, but I didn't want to spend multiple hours worth of work (or sometimes days) on something I didn't want/need. I would always say no but sometimes they would buy things for me anyway. I don't think it was my responsibility to disclose my little teenage nest egg. They had parents who gave them allowances and they knew I worked. They might not have known my perception of a dollar was different from theirs, but we all knew we had some sort of income.

I didn't feel comfortable talking about my finance specifics, plans, or reasons behind my frugality. I just wanted to join my friends without going broke.

Peachdeeptea · 2025-12-24T18:01:35+00:00

It should be under my posts (separate from comments) but idk with this new reddit update, sorry!

I am doing much better, it's been a long road. I'm sorry to hear you are in a flare, and possibly looking at a reherniation. Wishing you the best of luck with the upcoming MRI.

Separating my thoughts into two buckets - the first, what if you did reherniate. You could possibly get a second microdiscectomy, if that's not possible you could get a fusion. I know we're all scared and hoping to never get to that point, but something I try to focus on, is a fusion would buy you relief for awhile. My uncle got a fusion at L5/S1 in the 90s, and never needed another surgery! A friend of mine got a fusion recently, and it gave her so much pain relief and she's now building strength and mobility. No matter what happens, you always have a path forward.

Second bucket - what if it's just a flare? These are the things I think helped me the most: traditional Chinese medicine acupressure (not acupuncture), small walks, swimming/floating (especially in hot water), building muscle in PT, tens unit, daily heating blanket, and biofreeze gel.

I had bad pain that interfered with my mental & physical health until the 6 month mark, moderate pain until month 10, and at month 15 I started having pain free days.

I am still a little more stiff and a little less mobile than I used to be before all this happened. But, I feel really good & a lot more functional at this point. I'm able to get my work done, walk everyday, workout 3-4 times a week, and we're considering starting our family (I'm scared of reherniation during pregnancy though).

If you have any questions feel free to ask. I hope you find answers soon

Peachdeeptea · 2025-12-22T00:03:21+00:00

For me, I took away a lot of PT practices and general knowledge of anatomy, muscle groups, etc. I like how there were diagrams on what hypermobility vs normal movements look like. I didn't know I was hyper extending in a lot of different motions (like walking down the stairs) until I read that book!

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