I love it when dogs try to help but the task at hand requires zero dogs so they just kinda stand in front of you and look serious.

oh wow i heart u all actually

me when I have a problem and pretend it doesn't exist so I don't have to face my own emotions:

Them: *Says something*

Me: *Responds appropriately*

Them: Did you hear what I said?

Me: Yes

Them: Can you repeat back to me what I said?

Me: ................ No.

My brain knows which facial expressions fit, which yes or no responses could fit, and can even continue the conversation briefly, but it can't always take in the actual words being said well enough to consciously process them.

I'm sorry if you have to repeat yourself many times for me. Thank you for checking to see if I really did understand.

Stuck.

just a vent.

I have some kind of chronic pain and I don’t know what the fuck it is. It moves around but it’s rarely in two places at once. It varies in duration. Sometimes it’ll come back in the same place repeatedly over a day or two, then go. I don’t feel like I can push for any kind of diagnosis at all because the pain itself isn’t bad. It’s not like what I read about. It doesn’t stop me doing anything. It just hurts and comes back again and again for absolutely no reason. I just wish I knew what it was. I don’t understand what’s wrong with me. It’s been like this for 2 years now.

What does the pain feel like? I get pain in random places like you and it most often feels like I'm being jabbed over and over again with a needle.

I can't diagnose you, but if you're really lost on the cause, you might like to know that pain moving around sounds a lot like neurological to me, meaning the pain is coming from your nerves going haywire. There can be lots of causes and only a doctor can diagnose, but the most common that involves intermittent pain all over the body is fibromyalgia. If you're not already, I would be pushing to talk to a neurologist and a rheumatologist for possible autoimmunity. I hope this is any way helpful and that you find your answer.

Thank you, this is all really helpful and validating.

It feels like that sometimes, but often it feels like a bone-deep ache. Sometimes it’s sharp and sometimes it’s dull.

I’ve spoken to a doctor about this twice before. The first did blood tests then dismissed me, and the second told me to come back if it got worse, then dismissed me.

I suppose what’s stopped me from going back or seeking anyone else’s opinion is that it hasn’t gotten worse, it’s just stayed the same when it happens. Sometimes it so rarely bothers me that I can forget about it, then sometimes it happens every day of the week. But the pain itself has never gotten bad enough to stop me doing anything.

Fibromyalgia is also what I’ve seen coming up the most when I’ve been looking for potential answers online. I just worry that my pain isn’t as bad as what I’m reading about, so I must be making something out of nothing. But then, I’m only 20 years old and have no injury to cause any of this — there’s no reason I should be in any recurring pain, even mild, right? I don’t know. It’s difficult to know whether I’m being reasonable about this or just exaggerating.

Regardless, thank you for the reply!

Here's the thing no one is going to tell you, it's not normal to be in pain that doesn't get better. I know what it's like to be dismissed too, it's aweful. When I first had back pain that wouldn't leave after a spasm, doctors treated the x ray as word of God that nothing was wrong. I pushed for an MRI and I got diagnosed with a herniated disk.

The thing that sucks so much is you're in pain and you have to be your best advocate. It's okay to find another doctor if your current one isn't helping. Although your ability to do this depends on access. I live in Boston so there is a lot of choice for me. So when a pain clinic was treating me like the pain was in my head, I left. I got lucky and the next pain doctor I found took me seriously and is my pain doctor to this day.

Also, one way I got doctors to treat me more seriously is a pain journal. Every day I noted my pain levels and comments on how I felt. Your pain makes it harder to recall exactly how it's been. You may be surprised to find that the pain is worse than you think.

The next time you see a doctor, tell them you're concerned about a neurological or autoimmune problem, you want to see a Neurologist and a Rheumatologist. If they refuse, ask for it to be noted in your chart that you asked and they refused. When you go to the next doctor they can see why you haven't taken these steps.

At the end of the day it can take years to get a proper diagnosis, but you won't get any diagnosis if you give up. As enticing as that may be, you might be missing out on a treatment that could make a difference. It's not fair and it's not easy that the burden of your health that should be taken up by doctors is on your shoulders. I feel for you.

I hope you figure this out and find a doctor who listens. 💕

OP: your pain sounds like my experience of EDS.

I'll occasionally have deep, horrible pain in my bones or joints. Other times I'll have intense muscle pain. Other times I'll have very very minor pain that feels more annoying than anything. It varies a lot. It moves around my body because I have defective connective tissue everywhere, and subluxations and dislocations cause joint pain, muscle pain, tendon/ligament pain, and nerve pain. It depends on which joint is out of its assigned seat.

Thanks for adding. For OP and my own interest, do you know the process for getting diagnosed with EDS? Who would they see?

Yeah the bone deep pain sounds very like my hEDS pain. There's a page on the Ehlers Danlos Society website of eds health practitioners and I emailed a few of them near me and asked if they were able to diagnose. I ended up with an osteopath who did my assessment and diagnosis, but I believe a rheumatologist can also do that.

Link here: https://www.ehlers-danlos.com/healthcare-professionals-directory/

Their website also has a lot of helpful info if you're trying to work out of eds fits for your symptoms.

Thank you everyone for your contributions!! @lifewithchronicpain @nonbinarynightmarefuel @sexualrevoluti0n You’ve definitely given me a lot to think about. There are definitely some things I’ve been reading that make me think EDS might be a possibility, but then I’ve never dislocated anything. My joints move a little oddly in some places, there’s some clunking from one position to another, but none of it looks like dislocation or subluxation from what I can tell, and it doesn’t hurt when they move like that.

There are some really quite specific things I’ve seen being discussed that could be related too — I’ve got stretch marks when there’s really no reason to expect them in that place since I’ve not had weight gain and I’m not very tall. My jaw clicks a lot and is sometimes stiff or painful. It feels like there’s more movement in my jaw/face on the right hand side when I open my mouth, but I could be imagining that. I’ve also had undiagnosed back problems on two different occasions years ago, and nobody could find anything wrong with my back to cause it either time.

I’ve definitely got some research to do so thanks everyone for the pointers!

just a vent.

I have some kind of chronic pain and I don’t know what the fuck it is. It moves around but it’s rarely in two places at once. It varies in duration. Sometimes it’ll come back in the same place repeatedly over a day or two, then go. I don’t feel like I can push for any kind of diagnosis at all because the pain itself isn’t bad. It’s not like what I read about. It doesn’t stop me doing anything. It just hurts and comes back again and again for absolutely no reason. I just wish I knew what it was. I don’t understand what’s wrong with me. It’s been like this for 2 years now.

What does the pain feel like? I get pain in random places like you and it most often feels like I'm being jabbed over and over again with a needle.

I can't diagnose you, but if you're really lost on the cause, you might like to know that pain moving around sounds a lot like neurological to me, meaning the pain is coming from your nerves going haywire. There can be lots of causes and only a doctor can diagnose, but the most common that involves intermittent pain all over the body is fibromyalgia. If you're not already, I would be pushing to talk to a neurologist and a rheumatologist for possible autoimmunity. I hope this is any way helpful and that you find your answer.

Thank you, this is all really helpful and validating.

It feels like that sometimes, but often it feels like a bone-deep ache. Sometimes it’s sharp and sometimes it’s dull.

I’ve spoken to a doctor about this twice before. The first did blood tests then dismissed me, and the second told me to come back if it got worse, then dismissed me.

I suppose what’s stopped me from going back or seeking anyone else’s opinion is that it hasn’t gotten worse, it’s just stayed the same when it happens. Sometimes it so rarely bothers me that I can forget about it, then sometimes it happens every day of the week. But the pain itself has never gotten bad enough to stop me doing anything.

Fibromyalgia is also what I’ve seen coming up the most when I’ve been looking for potential answers online. I just worry that my pain isn’t as bad as what I’m reading about, so I must be making something out of nothing. But then, I’m only 20 years old and have no injury to cause any of this — there’s no reason I should be in any recurring pain, even mild, right? I don’t know. It’s difficult to know whether I’m being reasonable about this or just exaggerating.

Regardless, thank you for the reply!

That weird phase when your hyperfixation runs out. It's like that awkward stage when your hair starts growing out.

You just, you don't know what to do with it? You can't do much about it. Just Live through it until your hair is long enough.

In other words, until you find another hyperfixation

seen a this edible aint shit but for adderall

sharing @mumblesplash 's tags:

so is there an assistant dysfunction i can speak to