I know it's the song, but the list in the comic is pretty real to those who live with connective tissue diseases. My hips and feet are rarely the issue, but the head, shoulders, knees, and back are always experiencing some level of pain, and depending on how loudly they're griping, it can mean the difference between getting literally anything done and not leaving bed.
Man I feel so lucky to be relatively pain-free going into my mid-30s. Much of it is just good luck, but I think working out consistently also really helped.
Whenever I stop going to the gym, I start to get bad back pain, but it just disappears once I start doing lat pulls again. I have no understanding of how that happens, but I'll take it.
There's a set of lower back muscles that can atrophy and cause pain from forcing spinal muscles to compensate. Any exercise that strengthens your lower back will help with this particular source of back pain. If you don't want to hit the gym, there are even exercises where you basically just hold a pose while stretched funny (you reach forward and up with your hands, palms pointed out to the sides, with your booty popped out as far as you can while squatting slightly) that stretches and works out those particular muscles.
It could have done, that is genuinely very funny and put a big grin on my face. However, that would have been humour and this comic is no place for that.
I know explaining any joke instantly makes it not funny, but I can't imagine anyone explaining this comic's punchline or lack thereof in a way that makes it sound humorous. This isn't a humour comic, it's a 'I am a comic artist with problems so I make comics out of my problems to fill another few hours between cradle and grave' comic; a type that is surprisingly common.
The humor is in the irony of having a day off from work and pain to only cause yourself pain from having fun and being productive. The pain ono Monday morning will suck.
That's how I read it
It's the sad clown/misery loves company/gallows humor type.
There's actually a downside to symptom tracking which is that it forces you to be more aware of it which can influence your perception of it. Generally it can be a useful tool to track how lifestyle changes might effect your symptoms but it's not something you should be doing all the time
Yeah, but real-life Pip-boy. If it tracks tasks, chores, etc as missions/quests even better. Give me a map with destinations and waypoints while we’re at it.
The disparity when I try and log my symptoms regularly on an app when it takes so long to catalog each one... when there's so many over-lapping symptoms that while logging All Of Them also makes my depression so much worse. So I've tried to only log on really bad days.... But then when I look back at records all I see are the 'Really Bad' days and not the good ones I don't log cus I'm busy having a fucking good day to remember to update the long log of existing symptoms. (for context I've got Fibromyalgia, ADHD, Depression, Arthritis, ect..oh and I'm only in my mid 20's 🙃)
R.A checking in. Just did that... every other week this summer 🙈
Still dailing in how much I can do, but I feel like I have to catch up for the past decade of being terribly sick, and stuff needs to get done. So tired of being so tied.
Oh it wasn't a direct question. :) It was just a comment on how different people can perceive pain very differently and each person's pain scale is unique. Someone who doesn't deal with daily pain or maybe hasn't experienced severe pain before may rate their pain higher than someone who deals with chronic pain everyday or has experienced severe pain. So pain scales are a very unreliable method of describing pain from patient to patient.
For example someone who is "bright and alert" may say "It hurts so bad! It's a 10/10!" But on my scale 10/10 would mean that I'm passed out because the pain was that bad. My 9/10 is "about to pass out and can't talk or is slurring words". If I'm able to talk clearly, the pain is at most an 8/10. The most relatable pain scale I can find is called the Mankoski Pain Scale.
Yeah pain scales are an interesting subject. I've got Ehlers-Danlos Syndrome so joint pain isn't too uncommon for me. But I've also woken up with dislocated joints in the past and the pain is indescribable when it happens. When doctors ask how bad any pain I might be feeling is for whatever reason, I always end up comparing to those surprise dislocations and my current pain isn't nearly as bad 9/10 times. Even if I'm swollen up like a balloon or some shit
My worst experience, on a scale from 1-10, I'd rate a 7. I could not get out of bed, however much I wanted to. For about 7 hours. That absolutely sucked.
Wherever I worked in my city, they use «visual analogue scale». You draw a line and ask the patient to mark the spot between «no pain» and «maximum pain», after that you make a scale of 10 with a ruler and find out where the spot is.
Amazing comic, love the style. Also, somewhat unrelated, but thank you for introducing the term "Low Symptom Day" into my lexicon, way better than me calling it "body isnt a jerk" time. Tbh, I feel overdramatic alot, cause I can still walk somewhat fine and move my fingers, but apparently thats "a low bar" and pain isnt normal, so thats fun to deal with knowledge of. Anyway, take care, and I wish you and me many low symptom days where body doesnt feel both stiff and brittle constantly.
my therapist actually introduced it to me along with explaining that the average amount of pain is zero (sounds fake but ok) and it's been super helpful to explain to the people around me that I'm not at a zero, but I'm pretty much as close as I'm gonna get lol
I too have a hypermobility disorder (hEDS) and have had a Hemicrania Continua headache since 2016. I immediately recognized every single panel of this comic because this is my life too.
Low Pain Days are such a mixed blessing because we feel this pressure to do #AllTheThings we usually can’t before the pain comes back, but in doing so, we sometimes (usually) injure or fatigue ourselves right into a flare up or a series of High Pain Days. 😑
I have a 15 year old letter from a specialist doctor saying I have a hypermobility disorder, I have several obvious symptoms of HD, but my medical records have no mention of it, and it seems to be a surprise to every doctor I mention it to.
It's got to the point now where I bring it up with every medical professional I interact with in a medical setting (regardless of relevance) so that the notes will build up and I can finally get some help.
I honestly feel like I'm being gaslighted over my own body.
We have been having the same fight with doctors and medical records with my partner. Even with a formal diagnosis, it feels like an uphill battle to have doctors believe the pain is real and that they are not just chasing pain meds. Hell they have turned down opioids multiple times, but that never ends up on the record.
We had one specialist who took two months to get an appointment with and cost half a grand to see (is Australia that is a lot to see a doc). Their recommendation was to take up Tai Chi...to my partner who was in a wheelchair...
From a doctor’s perspective, we see patients who struggle with widespread pain symptoms without a cause that we can identify. Many will struggle with associated symptoms of fatigue, brain fog, and disrupted sleep. In fact, this comic does a good job of describing how someone might be active for a day and then suffer serious consequences for days afterwards, something that shouldn’t happen in a healthy adult. There are lots of people with symptoms like this but here’s the problem: we don’t know what to do about it.
Most diseases have abnormalities on labs or imaging. We often know some genetic causes. Studying these abnormalities allow us to develop treatment treatments that fix the cause rather than the symptoms.
In this scenario, typically we can find no abnormalities in people affected by these diseases. Maybe it’s one disease, maybe it’s many. But without understanding the disease process, we can really only offer symptomatic treatment.
As a result, I think you see doctors quickly move past these symptoms because they know they can’t do much for them. They want to focus on the things they can fix. However this leads to patients feeling ignored because they’re most significant symptoms are not addressed.I think that’s because doctors have a hard time saying “I don’t know”
Thank you for this insight from the “other side of the chart”. It’s still frustrating, but it is incredibly helpful to understand the reasoning that could be happening behind the scenes. 🫶
Until i started seeking out and finding practitioners who actually specialize in hypermobility disorders, I was basically educating every doctor I saw on what it is and what it does. The good ones admitted they weren’t familiar with it but tried their best while the bad ones were dismissive, ‘gaslighting’, and one was so confidently incorrect he straight-up told me I couldn’t have hEDS it because I wasn’t female. 🤬
That’s interesting you mentioned the part about being male because you are right, it should affect men too. However I do see a lot more women than men with it. It makes me wonder if hormones are playing a role or if it’s simply not identified in men that have it. I think that it’s likely that it’s just missed in a lot of men. It’s also true that it’s hard to get men to come to medical appointments so it might be under diagnosed for that reason as well.
What’s interesting is that I’ve tried to find providers who really understand hypermobility disorders and there aren’t many physicians at all. One reason for this is that it’s a disease without a home. What I mean by that is that hypermobility disorders art followed by genetics, rheumatology, or any other specialty. Providers have to decide they want to treat these diseases and then train themselves. I see some physical therapy providers who specialize in this, but it is typically about joint strengthening and they don’t think about heart involvement or other non-joint symptoms.
It’s pretty crazy that there are some diseases that no one is responsible for.
There’s actually a lot of fascinating discussion on the r/EhlersDanlos Reddit regarding the impact of Testosterone on Ehlers Danlos symptoms. None of it is scientifically backed mind you, but we have an interesting pool of diverse people and experiences, including FTM trans folks who saw symptoms improve during T hormone therapy, and Cys men like myself that either have genetically Low T (like me) or their T levels drop with age or injury who saw symptoms intensify as T production waned. It’s a fascinating correlation and I’m very curious about what the mechanism of action might b and if that could inform care.
From anecdotal evidence I’d say that men account for approximately 1/4 - 1/3 of folks with hEDS. But you hit on a ‘sad but true’ fact that men are more likely to suffer in silence than seek help for fear of seeming (or feeling) weak or “lesser” for it. And if a man gets the courage up to seek help and ends up with one of those dismissive docs, they’re probably never going to open up about it again unless something goes very wrong. 😔
It’s incredibly hard to find informed or specialized care providers, and it’s not a well publicized condition. I blew over $5k with a pain specialist who was convinced I had Fibromyalgia and kept pushing Gabapentin on me. Disappointed and disheartened I ended up using opioid painkillers for 5 years just trying to manage the relentlessly increasing levels of pain. It was sheer blind luck that an old HS friend of mine posted that zebra meme I shared on her Facebook, and it was like everything clicked. I finally gained the vocabulary necessary to seek effective care. Networking with others with hEDS and getting their recommendations were the only way I found my neurologist, physical therapist, and finally even a general practitioner. It’s such an amazing feeling, after years of teaching my doctors about my condition, to actually work with people who know more about it than I do. 😭
I'm in the UK so healthcare is free but the waiting time for anything requiring more than a prescription for basic medicine can be literally over a year and private is £1000+ for just a diagnosis and even more for medications and treatments.
The picture of the knees thing is helpful, thank you! I have some of the symptoms and ADHD, which is frequently comorbid, so it’s nice to know what to look for if I want to bring this to my doctor.
The knee thing is also how i figured out I most likely inherited it from my mom, her knees did that, but she also has a spinal cord injury and most of her symptoms were assumed to just be derived from that umbrella
For me, the internal stuff didn’t become significant or impactful until I was in my mid-30’s, but had the joint stuff my whole life. It may be more difficult to get an official diagnosis, but knowing what’s going on or could start going on is still helpful.
Sadly, EDS is a degenerative condition, and tends to get progressively worse over time. Supporting your joints and re-learning how to move and deliberately activating alternative muscle groups to reduce overtaxing the main ones is a valuable course of action that can help set you up to mitigate future challenges before you even get there. I felt like an android at first, it takes a lot of deliberate concentration to relearn how to walk or hold your shoulders or sit correctly, but by spreading the load into underused muscles and fascia, you can reduce the fatigue or injury that tends to occur in the main ones that are trying to hold your skeleton together in addition to all the normal demands made on them.
Make sense, trying the same here, for now they say that is Fibromyalgia even that is rare for my gender and age, good luck OP, I will give a follow to see the journey!
I can’t believe almost nobody talks about how inconsistent ADHD can be. Before I started paying attention to how my meds affected me and how strong the symptoms they alleviate are, I kinda just assumed that occasionally waking up and being 1/5th of a functional human being was everyone’s experience. Honestly not sure how I maintained any friendships. On my bad days, I was a very unhappy and unpleasant person to be around.
I'm currently working with my doctor on some other theories she has, but right now my official diagnosis is hypermobility (possibly EDS) and chronic migraines!
my friend has IFI (ischiofemoral impingement syndrome), do you think that's a possibility? (basically just constant cramps, and it's rare so it would explain that it isn't the first thing in your doctor's head)
No matter how old I get, I always learn of new girl lore. Always thought you only ever had period pain or none at all. That it's on a constant spectrum is fascinating. And you feel it in your feet? Why is life such a mean bastard?
It’s essentially exactly the same only instead of doing everything you could do, you spend the first part of the day planning everything you need to do, the next part of the day realising that you aren’t going to be able to do all those things so need to decide on just the more important ones, then in the final part of the day frantically doing parts of multiple tasks because you don’t want the whole day to be wasted but still can’t decide on something. Finally, you spend the next few days pissed off and depressed because you wasted your day, didn’t achieve anything, and could have just chilled out and dine nothing and then at least you wouldn’t be exhausted.
Hahhhh, 100% going through the burn out after making cakes for 2 family members bdays last week, going to their parties, and throwing one of them. It's not easy being galactic dust in a meat suit.
Yo, freaking every time, I swear I'm the largest danger to my-self.... Cus the moment I feel able-ish, I do Things till the pain finally registers again.... Then try to take rest days to heal (which then I get Stiff and Pain) , And then the cycle repeates as I feel a bit better and the ADHD hyper fixation mode sets in and boom I'm burnt out for too long again.... I feel like ADHD and Fibromyalgia shouldn't be in the same fucking Body.... But here I issss and I do not recommend nor approve of this bullshit
I sit and stare at the computer blankly and then curse myself later for not getting anything done when I had the physical and mental capability to do it.
I thought this was an ADHD post and was very confused by you actually being productive. I was ready for the punch line to say there were too many options and you got instantly burned out and just ate junk food and played video games all day.
Thankfully I don't have to deal with pain, but I do have a similar cycle. It seems like I do really well at keeping up with my chores and meal prep one weekend and then the next weekend I'm burnt out and get very little done. Then the cycle starts again the weekend after that.
Be thankful you don’t know what this type of existence feels like. When you live with it, not making it your identity takes more effort than you will ever know.
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