How to cope with chronic illness?


#1

I am struggling with chronic health problems. I have been struggling with worsening health problems since 2011, and these have been incapacitating since 2013.

If you’re struggling with chronic illness, what’s a better strategy?

  1. Keep trying to figure out what’s causing this. I was been able to get testing to rule out Lyme, multiple sclerosis, etc. when I was still able to see doctors about this. I have been unable to get any kind of follow-up, lately. I have trouble communicating with doctors because the offices themselves are not accessible, and because words like dizziness can mean one thing to me, just dizziness, and another thing to them, usually vertigo which I’m practically immune to.

  2. Keep trying to treat individual symptoms, in the hope that they will get better.

  3. Keep trying to work through this, in the hope that I’ll accomplish something.

  4. Something else.

Any suggestions?

I contacted my doctor about this, and she replied, but she didn’t answer the question. I would really like to know what to prioritize.


#2

I’m sorry. I share your frustration on these issues. I have been struggling with some similar issues with my mother’s health over the past few years, which on my part is being done at something of a distance (she lives within driving distance, but far enough away that I don’t see her daily). Her health has been getting better these past few months, but I’m still profoundly frustrated that whatever is wrong with her has no firm diagnosis.

It seems to me, in her case, they’ve gone with 2, and have put 1 on the back burner. We keep coming back to 3, but after several years of this, not much has changed, and we still don’t know the root causes - which seems to me what we need to be doing eventually. Part of the problem seems to be the fragmentary nature of the medical industry more broadly. Individuals seem expected to coordinate their own care, and it’s complicated to do so. I sort of feel like there needs to be a better way to coordinate care through one’s physician, but I don’t know how to get to that point.

It seems to me that for the most part all you can really do is 2 and then 1. But I utterly share your frustration at number 1 and how little that seems to get attention from the doctors she’s gone to. People with chronic illness need an effective advocate, and all too often that either falls to themselves or their family members, but you kind of need a professional, who understands the field far better than us, to really effectively do this.


#3

It doesn’t help that, if we can use the net, most of the reference books are paywalled, and most of the general reference sites assume you already have the right diagnosis, already have access to any appropriate treatment, etc.

I wish I could start with one of my more severe symptoms, hyperacusis, and go down a list of the most common to least common causes of hyperacusis, to see which ones fit…


#4

I’m sorry you’re having health problems, and I’m sorry that you don’t know what they are.

I can’t offer terrific advice on this, unfortunately. I can only relate my story, and maybe you’ll find something helpful in it. A few years ago I was on a treadmill when I suddenly felt something go all weird in my chest. I stopped, and wasn’t sure what to do. I was, and still am, young, with no reason to suspect a heart attack. I kept having these strange episodes.

I didn’t have health insurance at the time, so I avoided going to the hospital, since I was somewhat doubtful it was life threatening. After that, I saw a series of doctors, and made one visit to a cardiologist. None of them could find anything wrong with me. It got expensive, it didn’t seem to be killing me, and I just eventually stopped seeing anyone. Eventually, I moved to another state, got health insurance, and was very quickly diagnosed by a new doctor with a mitral valve regurgitation. It was benign, even if the symptoms were alarming.

In this case, a third opinion seemed to do the trick.
I wish I could tell you something more helpful than that.


#5

Yeah, I think some people self-diagnose through webpages like Web MD, but I don’t think those are great for that kind of thing. I think a major part of the problem is that our healthcare is so geared towards treatment of illness as opposed to getting people to wellness. Overall, having a clear diagnosis helps in effective treatment, but if you can’t get to that point, all you end up doing is treating symptoms.


#6

If that. I can’t get a diagnosis, and I can’t get help with symptoms either. I do have two referrals I can’t follow up on, because I can’t get anyone local and can’t travel, because the bus system isn’t accessible, because I have hyperacusis.


#7

This seems like a serious problem that needs to be addressed first. I know you can’t be the only one dealing with chronic illness who has issues getting care because of the illness you’re dealing with. I don’t know - have you tried calling the state health department to see if you can find someway to get someone to come to you?


#8

I have hyperacusis.


#9

Ah, so, no phone, right? Email? Of course, the problem with that is getting anyone to answer your emails.


#10

Yeah.

And it is also an obstacle to scheduling appointments, because that can only be done by phone, to raising accessibility issues with the bus system, to getting a taxi instead, to dealing with any kind of bureaucracy, and so on. In the meantime, I can cut back on caffeine and wear 57 nrr of ear protection whenever running errands, but that isn’t enough for long bus trips and doesn’t help with the phone.


#11

3 . On its own really isn’t an option for me. I can’t do much like this, and trying harder just means failing worse and feeling worse afterwards. Even running errands one day usually means migraines the next.


#12

My audiologist said that the most common cause of hyperacuisis is essentially iatrogenic - that isolating yourself from sound makes you more intolerant of sound (a not uncommon thing to happen to people with tinnitus who think a quieter environment will help.)

He said that treatment with white noise, quiet classical or “chill out” music, etc. is helpful both to reduce tinnitus and reduce hyperacuisis.


#13

Yes, I have an air filter which should provide white noise, and tracks for pink noise. That said, I don’t run them all the time. I also have the garbage truck which backs up not far from my window.

I have similar issues with sight and bright flashing lights, though those aren’t as bad as with sound and loud high-pitched noises. I have to shield my eyes to cross the street, because of turn signals and safety lights. So the combination suggests central causes involving multiple senses. I know that ptsd can shift symptoms like this. I know that migraines can cause symptoms like this, but this is all the time, not just when I’m dealing with severe headaches and nausea.


#14

Apparently with the music/sound therapy you’re supposed to increase your exposure to it over time. Like wearing headphones and playing it quietly. But I’m not an audio therapist.

My off-the-rack guess would be sensory integration disorder, but IANAD, just an MFT. You’ve met with neurologists?


#15

Yes. And I’ve had more sensitivity than most people since childhood, I’d complained about flourescent lights then and had headaches from buses passing under trees then, but this went from annoying to incapacitating in 2013. One test more-or-less ruled out Lyme. A couple scans ruled out ear issues and macroscopic brain issues such as multiple sclerosis or a tumor.


#16

My current plan is to put off a Spartacus essay I’ve been working on, listen to pink noise again, and go over the known causes of hyperacusis to see which ones I have, might have, and don’t have.

For example, I am autistic and certainly have sensory processing disorder and ptsd, I could potentially have fibromyalgia, and I don’t have multiple sclerosis. Because things got so much worse over the past few years, I suspect I have something else in addition to sensory processing disorder. Even though fibro and multiple sclerosis, for example, are incurable, they might be manageable once identified, and the hyperacusis itself might be manageable with sound therapy.


#17

Since hyperacusis, probably central hyperacusis, is one of my worst symptoms, and oddest, I went over known causes of it. Unfortunately, some, such as Lyme, lupus, and fibro, are infamously great imitators, and others, such as sensory processing disorder and ptsd are conditions I’ve probably had long before this got out of hand. But fibromyalgia looks like a good fit.

Can anyone suggest good resources on fibromyalgia, whether I should look further into it, whether I should see a doctor about it, etc.?


#18

I’m sure you’ve already checked this, because it’s clear you’ve been doing research for a long time now, but just in case: a common yet extraordinarily difficult disorder to diagnose (especially in women) is hypothyroidism. There are literally thousands of “common” side effects, so any combination will seem baffling until the thyroid stimulating hormones are tested (blood test). I remember one of my symptoms was the sense that my hearing had gone significantly bad, but a (very expensive) hearing test said there was nothing wrong. Apparently bizarre hearing issues are very common in this situation. Balance issues, exhaustion, really all of your symptoms could be explained by that one disorder. Not saying that’s what it is, but if it is, then after a few weeks of replacement thyroid hormone you would feel human again.


#19

[quote=“MarjaE, post:3, topic:52935”]
It doesn’t help that, if we can use the net, most of the reference books are paywalled
[/quote]The twisted part is a lot of that has been substantially supported by federal tax dollars. So we did pay for it, but they’re able to sock it away behind a paywall nonetheless.


#20

I’ve heard that fibromyalgia and chronic fatigue syndrome are thought by many doctors to be similar, and probably related, disorders. And, on that note, there’s been a study that seems to further understand it. I’m not sure if this helps in your case, but it might at least point you in some directions considering the ties to the immune system:

Article:

Study (not currently behind paywall):

Downloadable PDF:

http://advances.sciencemag.org/content/advances/1/1/e1400121.full.pdf