Joint Pain - Blog Posts

I had no idea how much I was relying on the Aleve I've been taking with my morning meds recently until I forgot to take my pills this morning. Anyways my legs are on fire right now.

Me: Okay, I have really bad joint pain and fatigue. My Sjögren’s syndrome and my pseudogout must be acting up. Google, how do I deal with Sjögren’s symptoms?

Google: You should stay active and get some exercise.

Me: okay, well that’ll be a little tough with how I’m feeling, but I can manage a walk or something. What should I do for the pseudogout?

Google: Rest. DO NOT exercise.

Me: Okay— okay but— but for my Sjögren’s, aren’t I supposed to—

Google: Yes for the Sjögren’s you should be moving moving moving don’t rest too much or it gets worse

Me: Okay well—

Google: But also remember the pseudogout DONT MOVE, don’t do anything, rest rest rest or your joints will be fucked forever

Me: I—

Google: But also get off the couch RIGHT NOW, your Sjögren’s, you need EXERCISE

Me: ….how am I supposed to—

Google: FUCK you

So I’ve been on Celebrex for like 3 1/2 months now, had to stop taking it recently because it was giving me some GNARLY nausea and oh boy. Oh goodness. I did not realize HOW MUCH Celebrex was helping me until I had to stop taking it entirely.

Like it wasn’t completely curing me or anything, I was still having constant joint pain and fatigue, but it made my symptoms… semi-manageable? Kinda? Like I truly forgot just HOW bad it felt to have my pain go untreated.

Luckily after my last intense flare up I made sure to really build my work schedule around my pain and prepare things to run on their own incase I needed to take it easy for a while but holy shit. I feel Very Bad™️ right now.

Anyway don’t be like me, listen to your body and take breaks when you need to. That goes for stuff other than exercising too, like if you’re doing any type of activity and you feel your brain and body start to be like “heeeeeeeey can we slow down?” That’s a sign that you should take a breather, or dial it back, or whatever. Knowing how and when to listen to your body is your most important tool to manage your symptoms.

It’s also an important tool to help you like. Be a happier, chiller person.

Yet again stuck in the pattern of

Works out to help my fatigue -> experiences joint pain because I was too rough -> takes a day to rest because of my joint pain -> experiences fatigue because I haven’t been working out -> works out to help my fatigue -> becomes the chronically ill equivalent of Sisyphus, trapped in a self inflicted loop of being tired and achey all the time

Yet again stuck in the pattern of

Works out to help my fatigue -> experiences joint pain because I was too rough -> takes a day to rest because of my joint pain -> experiences fatigue because I haven’t been working out -> works out to help my fatigue -> becomes the chronically ill equivalent of Sisyphus, trapped in a self inflicted loop of being tired and achey all the time

It’s so weird having my physical health tank when my mental health is the best it’s ever been.

Like whenever someone asks me how I am I’m just like “well my bones hurt, and my muscles hurt, and I can work maybe 3 hours a day before I collapse from chronic fatigue. But like the world keeps on turning, so I’m vibing dude B) ”

So fun fact when I was a kid my mom decided I wasn’t active enough. So she bought me absurdly expensive running shoes I did not ask for, dragged me out in the below freezing east coast weather, and started me on this “couch potato to 5k” challenge.

Every day after school, we ran. First it was 5 minutes a day, then 7, then 10… you get the gist. I think after 2 months we were running about an hour every day. By the time I quit running when I was 10, my mom and I had run 3 5ks together over the span of a little over a year.

A little after stopped running, I noticed some pain in my right knee. It got a little bit worse, and a little bit worse, and a little bit worse… and then five years later, when it had gotten to the point where I couldn’t pay attention in geography class because I was in constant pain from having to sit all day, I finally went to the doctor.

They told me the cartilage under my kneecap was worn down from overuse. It’s called chondromalacia patellae—also known as “runners knee.”

The thing is: When we were in races, and I was overwhelmed, I told my mom I wanted to stop. I told her I was in pain and I needed to slow down. I told her I didn’t like running.

And you know what she said to me?

“Suck it up.”

And I’m not saying “don’t tell your kids to exercise.” Your kids SHOULD exercise—not because of any bullshit weight reason or anything, but because they’re kids, and it’s good for them. Good for their bones, or whatever.

And I’m not saying “don’t exercise WITH your kids” either, because again, they should be exercising a little. And if you being there helps them stay motivated, that’s great.

What I am saying is: Listen to your kids. Trust that they know their own limits better than you do. Even if you think that they’re being over dramatic, or whiny, or whatever—don’t take the chance.

I’m 20 years old now. My knee still hurts. I have a whole suite of other, unrelated chronic conditions that would be improved if I exercised more. And I try to, I really do. But it’s kind of hard to do squats when just one makes your knee feel like it’s on fire for the rest of the week.

Listen. To. Your. Kids.

Really wish all the “low impact” exercise routines I find weren’t hyper focused on like squats and lunges and shit. Like bro, my knees DO NOT WORK. They simply do not function properly. If I do 15 squats today I’m not going to be able to walk properly for literal days.

…….but like I’m so tired and I NEED to work out to help with my fatigue, and I don’t have the attention span for yoga right now. So I do the five bajillion squats anyway.

And I’m stupid so I forget that that’s a bad idea, so when I’m in an incredible amount of pain just walking up and down the stairs for the rest of the week, I’ll be like

Doctors be like “before we refill your medication you need to make an appointment” and then I show up to the appointment and it’s just

“Does it hurt?”

“Yes, literally all the time.”

“Cool here’s your drugs, see you in three months.”

I’ve been exercising to help my fatigue, unfortunately I keep pushing myself too hard and worsening my joint pain…. which then makes my fatigue worse.

BUT it’s okay because if I need more energy, I can just exercise! Again! And if I injure myself again and my fatigue gets even worse, it’s okay, because if I need help with my fatigue, I can just EXERCISE!!! And then if my joints get worse because of that and I get more fatigue, it’s okay, because I can just EXERCISE MORE, AND—

I’m not TECHNICALLY diagnosed with lupus yet, because I have to see the rheumatologist for more tests. But my ANA is crazy, I definitely have some kind of autoimmune disorder, and I tested negative for RA and Sjögren's syndrome, so like. It’s PROBABLY lupus.

And I’m tired of saying I have “something” or “some weird autoimmune thing” or whatever. I just wanna put a name on it, and right now, that name is lupus.

The duality of “I should get up and move around, it’ll help with my pain” vs. “I can’t move at all, I’m in too much pain”

Like yeah, if you struggle with chronic pain you should try exercise, because it probably will help. But in order for exercise to even be an option, you have to be in an at least semi-manageable amount of pain to begin with.

Listen I know the only way to figure out what’s making me sick is to wait for my lab tests to come back and see what the doctor says.

And I know that panic googling autoimmune diseases that I MIGHT have is 1. Not productive and 2. Not healthy.

…………………but I read this article about LUPUS last night, and I—

Me: I mean I just told you I have a family history of autoimmune disorders and joint problems, don’t you think we should at least look into—

Dr: You know what else you have a family history of?

Me: …………….dude I swear to god—

Dr:

💖💕Mental Illness💕💖

Me: Yeah so I’ve been having horrible joint pain, muscle weakness, and fatigue for the past several years that’s worsened dramatically in the last 2 months.

Dr: Hmmm…. Fatigue, you say? Do you happen to have any…… mental health issues??

Me: …..I mean I have an anxiety disorder, but I really doubt that—

Dr: That’s the reason, that’s why you’re fatigued. It is your ✨mental illness✨

Me: Okay but I’ve had anxiety since I was a kid and the fatigue is a recent issue, so—

Dr: So sorry to hear about how ✨MENTALLY ILL✨ you are and how it is causing literally ALL of your health issues😢☹️

Me: But my anxiety is way better than it used to be, plus like I said I’m having joint pain as well I really don’t see how that could be caused by—

Dr:

✨💫Mentally Ill✨💫

Me: I am mentally and physically disabled and therefore am not capable of working as much or as hard as most people. I need to remember this and not push myself too hard.

My body after a long day: *collapses from physical and emotional exhaustion after I’ve pushed myself too hard*

Me: 😲????? Who could have foreseen this😲😲😲😲?????

I get to go to the doctor and be tested for different things. Joint pain really hurts and brain isn’t working right now. Mom thinks I have arthritis but only 22 years old. I know arthritis happens to all ages, just sad. I’m worried if I can write still. Can I draw still? Good news tho! I’m getting a forearm crutch soon. Might help more than a cane. Been using cane for a while, want more stability though so figured arm crutch? I’m sorry if this doesn’t make sense, I’m struggling with words right now.

Also, if I’m putting wrong tags, let me know. I’m sorry, I’m trying

Not my dad having called me a slur used for physically disabled people anytime I was injured or in pain during my childhood, long before I was diagnosed with my disability. I didn’t know it was a slur at the time.

Not me assuming that after I actually was diagnosed with a physical disability that he would stop calling me that out off respect or at least ask me if I mind. No one really cares about a child understanding words that are meant to be used as an insult because if they don’t teach them they’re an insult they think they can get away with it. That’s not good.

But I was having a bad pain day and my dad once again called me the G word, which not everyone knows.

He didn’t say it in front of anyone other than me and my mom, and he didn’t say it in an insulting way, however he has a tendency to say rude and cruel things with no intention of them being either (or with the intent but not caring)

I don’t actually have issues with the word itself on reference to me. Gimp(y) and Cripple aren’t words that I am afraid to use to describe me but I don’t need my father to assume I’m okay with using it as an adjective.

I wonder how he’d react to me referring to him as it? Another chronic pain haver who happens to use a cane on occasion.

Hmm

Hey y’all!

I’m about to make a website for an organization I’m creating to help those with hidden/invisible disabilities and illnesses.

I want to be able to make this website accessible for people with all types of conditions and wanted to reach out on here to get any suggestions from people with those types of conditions.

I also created an Instagram for the organization but it’s still in the very early stages so I won’t be sharing yet…

Let me know if you have any suggestions or questions!

So recently I’ve bee considering applying for a balance and mobility support/service dog, but I want a bit more information from people who actually have them and aren’t paid to give a good review

(It’s also alarmingly difficult to find organizations that train balance and mobility service dogs)

I understand the financial drain and the time you need to put in to make the team function properly. I understand that a service dog is considered a medical device and not a pet, but they still need love and support and breaks like all loving things should. I understand that given my allergies a poodle would be the best option but I could also push for a less common breed.

Does anyone have an info, tips or blogs to recommend?

I really want to be independent once I move out and I really think a balance and mobility support dog would be helpful.

So I have a question for others with diagnosed hypermobile ehlers danlos syndrome

When I was diagnosed, the doctor said to me that there are no pain meds that can help with my pain that he is willing to give me because the only ones strong enough to work are highly addictive or can make you “high as a kite” in his words.

Has anyone else been told this? I mean it’s true low level pain meds don’t work on my joint pain but still, is there anything?

Yo I also have over pronated ankles and wear insoles and hypermobile eds, but I have been wearing these insoles for a decade and I was only diagnosed with eds earlier this year. And they’re custom insoles from like a military doctor because of how messed up my ankles are cause they normally only do those for veterans and not dependents.

How did it take this long for me to be diagnosed?!?!?

I’ve been unable to get the insoles I have been using for years and went with a “recommended brand”.

Of course I spent a whole month trying to keep my knee in place before it occured to me that the new insoles were not doing their job.

Anyway, I now recommend PCSsole Heavy Duty Arch supports for over pronation, because I can walk again.

Just remembering the times I’ve actively been falling asleep in front of a doctor due to my chronic fatigue but then they still don’t do anything but tell me I need more sleep

Which isn’t unreasonable but I am a student. An AP GT student who falls asleep during class as well so I don’t get the notes or miss the lesson so I have to come in after school to get notes (or dig around the online classroom for the teachers that actually post their notes) and then have to teach myself the lesson.

Then I have to do the homework which is difficult for me to focus on (we think it’s undiagnosed adhd given other symptoms) and trying to complete the assignment takes a minimum of an hour. Give or take given exhaustion and falling asleep reading the questions, pain in my wrist, fingers, hands, etc, or having to do other things.

Then multiple by the four educational classes I’m in (thank god French doesn’t have homework)

I get as much sleep as I can

All this to say, I’m glad it’s summer and I’m glad I was finally diagnosed (maybe collegeboard will finally consider accommodating me)

This is kinda weird but I’m trying to figure out how weird my ankles actually are. I have over-pronated ankles but high arches, which apparently is strange because flat feet cause over-probated ankles and high arches cause under-pronated.

Over-pronated ankles look like ) (

Under-pronated ankles look like ( )

And normal ankles are straight | |

Please reblog if you care to so I can get a larger sample! It would be much appreciated!

Casually remembering when a classmate mentioned something about burning easily in the sun and I said “pale skin gang” and they paused and said “no I’m definitely paler than you” and pulled up their sleeve.

Now I didn’t mean it as a competition, I feel that’s obvious from the statement, but I plopped down my milky, semi translucent arm and stared them down.

“Holy shit, you could be a vampire”

“Pale skin gang, we all burn together”

Mind you, I can see my veins from my shoulder all the way into my hands

But the nurses can never find a vein that works

Damn you rollie veins

My foot has been hurting for the last five days and is making it agonizing to try and do my PT.

Nothing looks wrong, it’s not a joint (I think?)

It doesn’t hurt all the time but if I bend my foot up towards my ankle it hurts or point it.

This is weird

So excited to have a flare up during my EOC exam tomorrow and not being allowed to have any of my diy treatments because the school refuses to accommodate me, so fun!!! /src

But seriously I had a flare up in the middle of my SAT and it caused me to not be able to finish a section due to incoherency and pain. Literally just let me have my salty beverage…..

For those out their with heds that use mobility devices, what device do you use and what was the point that made it a need ? I’m so tired and I’m pain on the daily in either my hips, knees or ankles (and that’s only below the waist)

I’m dependent on my parents for getting care and they are relatively supportive as disability is common in our family but my mom seems reluctant to even discuss the possibility that I may need an aid.

Any advice?

(Also going to the doctor this week to ask about symptoms of pots I’ve been having for years and stomach problems)

Me when I went to the endocrinologist and they assumed I didn’t know what my autoimmune disorder was. Not like I’ve been dealing with it for 4 years.

Didn’t even think to check me for what I was soon after diagnosed with by a geneticist.

My doctor shocked I know more about my debilitating condition than him

Tag yourself as a random element based on stupid logic

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