[nwienert]

As someone who had years of undiagnosable pain and after many years (and more than one doctor trying to suggest it was all in my head) I just want to say to anyone reading who has it -

Don’t let yourself be gaslit that it’s all mental. It seems some do have that, but there are also many hard to diagnose and completely valid physical health conditions that cause terrible chronic pain. And don’t give up on trying to find out what they are. Once I did, I was able to largely manage mine, and more importantly, to stop constantly questioning my own sanity.

[Aurornis]

> Don’t let yourself be gaslit that it’s all mental.

I agree, though this is a very difficult subject. Often, the people who would benefit the most from psychosomatic interventions are often the most resistant to accepting those explanations. Meanwhile, many of the physical chronic pain sufferers I know have desperately tried various mind-body programs (without success) because they will try anything that might help.

If people match the description of the author of this post and blog, where the pains are widespread, vague, and popping up around different parts of the body without explanation then you really should explore psychosomatic explanations like this author did.

However, I’m growing weary of the trend of people who fit this description starting newsletters they want you to subscribe to (like this one), writing apps they want you to download/buy, and making comments implying that they know better than doctors about chronic pain (while putting an obligatory “not a doctor” disclaimer juxtaposed to their comments complaining that doctors don’t know what they know). I think it’s great when people share their experience, but it’s getting tiresome to see it productized and generalized as a more universal explanation.

EDIT: Another trend in this space is to productize by building an audience (please subscribe to my Substack) and then introduce the monetization plan later: A subscription app, an e-book, a partnership with some product. It’s possible this person organically decided to quit their job, sell their house, and focus on writing a no strings attached Substack blog series to share information. However, I’ve seen this play out across enough health influencers that I recommend everyone stay cautious about people who claim to hold some information that will change your life but they need you to subscribe first. Be careful.

[glasscannon]

> and making comments implying that they know better than doctors about chronic pain (while putting an obligatory “not a doctor” disclaimer juxtaposed to their comments complaining that doctors don’t know what they know).

I am not claiming to know better than doctors whom are proficient in pain science/medicine.

Rather, that most doctors are not adequately educated on this topic. If you ask the average doctor they will tell you how little it is taught in most medical education programs. Case in point, most pain sufferers will tell you how many doctors they had to bounce between before they finally got some answers/direction (if they were lucky).

FWIW I was preparing for two months this year after I left my job to sit the Australian med school entry exam. Ultimately, I decided I would be able to help more people today, with tools readily available (including a computer and substack) than spending the next decade of my life preparing for a medical career.

I would consider amending that part of my post to say something more narrow like "Not a pain doctor", but it seems more straightforward as it is now.

[mkoubaa]

Technically it is an experience that is internal to the nervous system... but a doctor telling someone that it's imagined because they can't identify the root cause is criminal!! If we have to make something up about it we're literally better off calling it a demon.

[glasscannon]

Thanks for sharing this.

Very much agree it's critical to get an accurate assessment, ideally from a doctor who understands pain science to rule out a structural cause. In saying this, I recognise many practitioners are not fully across this so I'm hoping this series will help increase awareness.

This first blog is meant as a quick intro to the series - blog post #2 will break down the different categories of chronic pain (i.e. broadly including tissue, nerve damage and pain due to brain plasticity - what the series is primarily focused on).

[CoastalCoder]

Would you mind sharing a little detail about what the physical malady turned out to be, and why it took so long to diagnose?

Sounds like an interesting medical mystery.

[nwienert]

Combination of two autoimmune conditions, one Ehlers Danlos.

Actually EDS is interesting because it became a fad I guess on TikTok to claim you had it like Tourette’s, further exacerbating the above issue.

It’s got a wide spectrum. My dad had it so lightly he was just considered “double jointed”. I gained a further thing from mom’s side, which seemed to interplay poorly. Spent 19-26 basically having extreme nausea and vomiting episodes every month or two, often having to go to the hospital to stop it. Had other weird symptoms and pains before that and during too.

Did every scan, met tons of specialists. Kept getting referred down the GI side, had gallbladder removed for no reason.

At one point I was convinced it was psychological. This was after a second doctor suggested it. It sent me down a dark path for a few years of trying to figure out what was wrong with me - didn’t help my mental state was terrible from all the uncertainty, and I had developed anxiety about eating since basically any meal could end up in hours of extreme pain. I was a total wreck. Then it just cleared up finally at 26.

It wasn’t until years later I got the EDS diagnosis, and then a genetic test showed the other immune condition. When looking at the two lists of symptoms it was such an intense moment in my life, finally having closure.

[theshackleford]

> At one point I was convinced it was psychological.

I ended up thinking the same thing after a prolonged period of symptoms that didnt make sense. I 100% began to think I was losing my mind and imaginging it. Turns out I had a spinal cord injury. The problem is, not knowing that for as long as I did ultimately did impact my mental health in other ways.

It was nice to find out ultimately that no, I was not just going insane.

[nwienert]

Cheers brother, not many people know that specific nightmare. Glad you’re over it.

[fu-hn]

What were your symptoms?

[theshackleford]

It started as just pain. Mild at first, mostly in my arms and shoulders, like someone had yanked them out of their sockets. Over time, it got worse. Not constant, just... random, brutal spikes. One minute I’m fine, the next I move slightly wrong and I’m yelping like a dog, unable to lift my arms, turn my head, or function at all.

I’d go to doctors, and try to explain. "Look, I know I seem okay now, but yesterday I literally couldn’t move etc etc." Time after time they would just respond with some variant of "Patient is stressed, stress is inducing pain, patient should stress less." or "patient is overworked, should do less work, etc".

This went on for over a year. I kept having these episodes, days at a time where I was barely functional. The pain, the immobility, completely real to me, but apparently all in my mind according to my doctors. "Take painkillers/antidepressants/rest etc etc." As a result eventually, I began to wonder if maybe I had just gone insane. Maybe this was all in my head and I was just imagining being in pain.

Then things got worse. I suddenly had to pee all the time. My hands started losing dexterity. I began bumping into things, losing my balance, subtly at first, but unmistakably. It was no longer just pain, my whole body was going off the rails.

After I woke up one day, completely unable to move, I was rushed to the hospital. Same story: they told me it was stress, maybe anxiety. I snapped. I told them if they discharged me without finding out what was going on, and I was later to find out that something had in fact been wrong, I’d sue everyone I had interacted with that day. I don’t even remember exactly what I said, but I must’ve hit the right nerve, because they finally agreed to do an MRI, not to help me, but to shut me up.

The scan finished. I never saw the general staff again. Instead, the next person who walked in was one of my country’s top neurosurgeons. He asked, very calmly, if I’d please come to his office for an urgent (and free) consult, because the imaging contained some pretty serious findings that we needed to act upon immediately.

Finding out I had not in fact being going insane...I burst into tears as the news was delivered. For so long i'd just been left to think I was going mad and here I was finding out that there were in fact very real reasons for everything I was experiencing.

[fu-hn]

That's wild. I'm glad you got a conclusion.

I have some strange medical results but not nearly as serious as yours, but still I'm hoping to also find some answers and I can relate to the feeling of being dismissed by some doctors.

[marcinzm]

Not OP but similar story with someone I know. Five years of many specialists that always ended in "all the tests are negative so it must either be fibromyalgia or psychological." Doctors never helped but eventually they empirically found that abilify and rexulti in very low doses (ie: half the minimum) made it just go away. Empirically based on the reaction to various medications it was probably some type of dopamine imbalance or issue. There's other case studies of similar reactions to abilify and chronic pain but not many.

Extra fun fact, a deep research AI nowadays will actually suggest this as one of the treatments given a few paragraphs of information on the symptoms/medications tried/etc.

[nwienert]

Dopamine can help autoimmune issues - if they haven’t seen a rheumatologist I’d recommend it.

[matwood]

> Don’t let yourself be gaslit that it’s all mental.

This is a big problem women have around menstrual cycle pain. "It's normal" is what many doctors say - particularly men. A woman I know was basically bed ridden for a couple days/month until she found a doctor who believed her and addressed the problem.