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Chronic health issues: confused about what to do next
k-maps
I wish I could find the Karnaugh map for love.2^<3Registered User regular
I wish I could find the Karnaugh map for love.2^<3Registered User regular
Ugh. So I'm trying not to write this huge exegesis on my medical history but at the same time not oversimplify my situation.
Let me start by saying that I have seen a lot of doctors, didn't get anywhere, neglected to do anything about it for a long time, and lo and behold, it's still a problem. I don't play the game of self-diagnosing, but what I am certain of is that there is a) something serious going on; b) it is most likely more than psychological; and c) it is interfering with my life to the extent that if I don't take care of it I'm at risk of really jeopardizing my future job prospects.
My question is: how do you approach a doctor in such a way that you can circumvent some of the boilerplate stuff they make you do and try something different? When I first sought medical help I was put through this giant rigamarole of getting tested for every STD (despite not having any risk factors), diseases I had no signs for, psychological counseling, and lifestyle changes. The thing is I've already made a lot of serious lifestyle changes to improve my health and eliminate the possibility that my ailments are caused by some external factors by:
1) Exercising regularly: not having a car, I bike everywhere. This usually amounts to AT LEAST ~30 mins. a day. I also run ~5K three times a week.
2) Dietary changes: pretty much completely avoid junk food and sugar altogether. Overall, while lately I've been forced to eat out more, I stick to wholesome food without doing anything radical like Paleo, gluten-free, etc. I was tested negative for all common food allergies/intolerances.
3) Almost no vices: I completely cut out drinking. Zero alcohol intake. Also, I quit smoking completely about 3 months ago. The only thing I still indulge in is caffeine, but that's mostly in the form of tea, or one cup of coffee a day max.
4) No meds: I don't take any other medication except the occasional multi-vitamin or Valerian root to relax.
5) I've been meeting with a therapist on a weekly basis for 6 months now.
Despite these measures, I still experience dull headaches emanating from the back of my head, extreme fatigue, lack of concentration and memory problems that have lasted more than 3 weeks and have been recurring more than a year. How can I convey this information to a doctor in a way that they take me seriously enough to cut through some of the typical bullshit they make you do? I don't have that much time before my insurance runs out, and I don't want to spend it all retreading all my steps. I understand that they have to do their due diligence, but I really feel like it's time to try something else. I should mention that I had to move a lot in the past few years, and so never managed to establish any sort of rapport with a single doctor.
I'm really discouraged, because last time after doing all this work I basically got nowhere and was essentially told to just go home. It was so humiliating, that I feel extremely wary about going through this again.
Let me start by saying that I have seen a lot of doctors, didn't get anywhere, neglected to do anything about it for a long time, and lo and behold, it's still a problem. I don't play the game of self-diagnosing, but what I am certain of is that there is a) something serious going on; b) it is most likely more than psychological; and c) it is interfering with my life to the extent that if I don't take care of it I'm at risk of really jeopardizing my future job prospects.
My question is: how do you approach a doctor in such a way that you can circumvent some of the boilerplate stuff they make you do and try something different? When I first sought medical help I was put through this giant rigamarole of getting tested for every STD (despite not having any risk factors), diseases I had no signs for, psychological counseling, and lifestyle changes. The thing is I've already made a lot of serious lifestyle changes to improve my health and eliminate the possibility that my ailments are caused by some external factors by:
1) Exercising regularly: not having a car, I bike everywhere. This usually amounts to AT LEAST ~30 mins. a day. I also run ~5K three times a week.
2) Dietary changes: pretty much completely avoid junk food and sugar altogether. Overall, while lately I've been forced to eat out more, I stick to wholesome food without doing anything radical like Paleo, gluten-free, etc. I was tested negative for all common food allergies/intolerances.
3) Almost no vices: I completely cut out drinking. Zero alcohol intake. Also, I quit smoking completely about 3 months ago. The only thing I still indulge in is caffeine, but that's mostly in the form of tea, or one cup of coffee a day max.
4) No meds: I don't take any other medication except the occasional multi-vitamin or Valerian root to relax.
5) I've been meeting with a therapist on a weekly basis for 6 months now.
Despite these measures, I still experience dull headaches emanating from the back of my head, extreme fatigue, lack of concentration and memory problems that have lasted more than 3 weeks and have been recurring more than a year. How can I convey this information to a doctor in a way that they take me seriously enough to cut through some of the typical bullshit they make you do? I don't have that much time before my insurance runs out, and I don't want to spend it all retreading all my steps. I understand that they have to do their due diligence, but I really feel like it's time to try something else. I should mention that I had to move a lot in the past few years, and so never managed to establish any sort of rapport with a single doctor.
I'm really discouraged, because last time after doing all this work I basically got nowhere and was essentially told to just go home. It was so humiliating, that I feel extremely wary about going through this again.
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To be fair, pyschological issues can trigger physical problems. I have irritable bowel syndrome. High stress will ALWAYS trigger it. No stress and it will STILL get triggered sometimes, no rhyme or reason to it.
As for help, unfortunately K-maps, you're kind of SOL. A bad doctor, like its seems you've had a string of, will either tell you "Its all in your head" or does you up with enough drugs that people will think you're an addict. When you find a good doctor, they're going to pretty much ignore everything the bad doctors have done and start from the bottom up, because they're not going to trust the quacks you've previously seen.
I know this from second hand experience. My older sister has fibromyalgia. She had a string of bad doctors that left her in the "looks like a drug addict" state I mentioned while she was living a few hundred miles from the rest of the family. When she was finally in a state of complete uselessness and we were able to get her home, we tracked down a good doctor and the first thing they did was put her on a drug detox regimen to clean her out.
Then it was starting from the bottom up to see what they could do. Its taken five years, but they've finally tracked down the root cause. It turns out my sister is highly allergic to vitamins C (fruit), B(meat), and E(wheat), and the allergic reaction to said vitamins is what's constantly triggering her fibro attacks. All of her previous doctors were just pumping her full of pain drugs to mask the pain. Her current doctor is now working to find a way to suppress the allergy so the attacks don't happen in the first place.
What you need to do, k-maps, is find a good doctor who will take their time and be patient with you while working out what the root symptoms are.
I'm just having trouble managing all that and the time I have to put into other things. And since I can't get a diagnosis it's difficult for me to negotiate any leeway with school/work.
Keep a food log, and put a 1-5 stars next to the day depending on the severity of the problems. Also, you may want to look into a multivitamin and see if that helps. But yeah, things like depression can cause those physical symptoms too. The food log will help you isolate if it's food based, at least.
@mts : Don't rule up leg/feet issues either, they can misalign your spine.
there's a reason they start with the simple stuff, a lot of reasons actually
what you need is a GOOD doctor who will navigate the process ably and accurately
not just one who will dance for you
What's probably happening is the doctors aren't skipping A, B, C... they just never quite make it past D.
If you are going to go to a new doctor, they are going to generally want to try all of the regular and normal tests and process and see how you respond to them before they start going into more exotic tests or concepts. Now, you can probably skip a few steps if you've already had the tests done, but understanding that all good doctors are going to follow a similar process is very important. It can suck when you have a chronic condition, but earnestly working with them and following through with their instructions is very important.
The 'food diary' suggestion sounds like a very good place to start. Keep track of what you eat, and the severity of your pain / symptoms. That may help you find some correlation with your diet. You may also wish to cut out some of the more common allergens - corn, gluten, etc for a few weeks at a time and see if that eases your symptoms. That may not even be your issue, but a working placebo is still working.
I'd also suggest making sure you are eating enough food and at proper intervals. If you're only eating a few large meals, try eating smaller snacks throughout the day. If my wife goes too long without eating (she's hypoglycemic) she gets similar symptoms that don't really just go away by eating.
You've also noted that you've been experiencing recurring periods of your symptoms for a few weeks at a time, over the past year. You should keep a journal of your symptoms so you can possibly correlate it with other events. If you find these events are occurring in a periodic fashion, you may want to look into environmental factors - anything from birth control cycles to an exterminator who comes and sprays along the same timeline. A journal or log is a really important piece of information, and most importantly will be helpful when you go to the doctor and try and get them to take you more seriously.
I do want to say that, unfortunately, you can't expect a quick resolution to this. Medicine is very much trial and error - eliminating each possibility as much as possible over time. Each 'cycle' is likely to take at least a few weeks or months, and some people take years or more before their chronic conditions are properly and completely addressed. This isn't necessarily the fault of the doctor, and of course is going to be very frustrating to a patient who is dealing with the conditions. Find a doctor you are comfortable with and try to keep working with them through this issue. Share your concerns, and try to get an idea what they want to do, and a timeline / roadmap of what they will do if you are unresponsive to their first, second, third, etc ideas.
That was my guess too. The headaches and tiredness seem like a hypoglycemia thing.
or very much a thyroid
The bizarre thing is, I used to be a pretty bad insomniac. Like I could never get to sleep until very late at night, and the sleep would often be pathetic. But that used to be just typical insomniac k-maps, still highly functional if you can believe it. Now I feel like a hypersomniac, I pass out cold at the end of the day, often before I even have time to take a shower or brush my teeth. Then I wake up with a weird headache (back of head) and like this feeling like I'm trying to "sleep something off." It reminds me very much of combating the flu (yes, it cannot be anymore vague). It then takes me a lot longer to "come to" then it usually does after I fall asleep, as in coherent thoughts don't form until a few minutes in (and maybe they never do, but that's a different issue).
Another bizarre issue is that I developed complete intolerance to alcohol. If I have a beer, it would exacerbate all the symptoms I described immediately for 3 WEEKS (!). I've noticed this pattern fairly quickly so completely cut out alcohol. Normally, I'd be more reluctant to cut out something so ingrained to many of my social activities, but it was so fucking bad that cutting it out completely was not a difficult decision. Nicotine helps in the short-term, but I figure smoking is just generally stupid and fucks shit up in your body, so I cut it out entirely as well.
I can't help but have "running theories" of what I have, but I've learned it's usually a bad rabbit hole to go down. I can associate specific events to when these symptoms started, but I'm not sure it's a good idea to discuss them on an internet forum. Not because they are illegal or embarrassing in any way, but because they'll spark a series of pseudo-diagnoses or anti-diagnoses.
@bowen is right with his A, B, C comment. I used to have the utmost respect for doctors, and jumped through every possible hoop no matter how farfetched it seemed to me. But after I was met with such a dismissive attitude after jumping through all said hoops, I was very jaded by the process to say the least.
Also, if I may suggest getting a bite guard? They sell some general-purpose ones at most pharmacies / grocery store tooth care aisles, and your dentist can probably fit you for a better one if that seems promising. My sister stopped having migraines when she started wearing a bite guard. Could maybe be related?
Welp. Cut out all grains or processed grains from your diet. I suspect it's not "alcohol" you're intolerant too, but the 'grain' that goes into making beer. If you drank wine, you'd probably be fine. Maybe not, though. Maybe it actually is the alcohol. Doesn't hurt to cut out the shit below:
No cereal, no corn, no oatmeal, no bread, no taco shells, no hamburger buns, no pizza, no beers, no ales, nothing.
Tell your doctor about that part, that's a pretty big deal.
I'd also be worried about the level of physical activity you're doing and you under eating.
I'd expect someone doing a 5k every other day and biking 30 minutes a day to be probably eating a lot of food. That's like... 6 lunch size meals a day.
Teeth-grinding? Nah, I used to as a little kid so I'm pretty familiar with the symptoms and I don't seem to have any sign of it. Also, when I shared a bed with my ex she never seemed to complain about anything like that.
I think the issue might be you're undereating. It certainly adds up. It might be coupled with some sort of IBS/Gluten issue too. But I'm no doctor and you should start with the food log and a journal of the issues, and see if they match up.
Good luck.
Right, I don't want them to dance for me. I just think it's time to try something else than just assume I have AIDS or I'm crazy.
I think you're going to have to overcome your frustration with the process and get some expert medical help from professionals. Maybe start by finding a primary care physician that you get along with and trust. Maybe ask friends for recommendations. There are some bozo doctors out there, but there are lots of good ones too.
I am not saying that you have brain cancer, but if anything outside of diet/exercise is going on and blood work doesn't show anything, you may need to see a specialist. If you don't make it clear from the beginning that you're seeing the PCP for a referral, sometimes they run tests and do blood work and shrug their shoulders when nothing obvious comes back.
An MRI to "have a gander" at someone with your symptoms isn't abnormal, and a doctor won't look at you like you're crazy if you request one.
It's a diagnostic test. It comes back with a result. That result helps your doctor diagnose your condition, and then you can start treating it.
Or it doesn't come back with anything out of the ordinary (which is good because it rules out some nasty stuff, but also frustrating because it means you need to keep looking)
I'd possibly suggest a referral to an Ear / Nose / Throat specialist as well. That's the way I feel when my sinuses get backed up from normal allergies. Does taking a Claritin or another decongestant help relieve the symptoms?
Also, how much are you eating / drinking? I mentioned hypoglycemia earlier, and those symptoms kind of sound like you aren't eating enough throughout the day. More and smaller meals - food journal. Also, the symptoms you mention sound kinda like a mild hangover. Do you drink water every day, and how much do you drink?
Besides seeking a referral to a neurologist* you might ask a PCP about having a sleep study done. As ihmmy said it may be sleep-related; something like sleep apnea could explain some of these symptoms.
*I'd be prepared for a catscan or more. MRI's are great and all, but if you're complaining of chronic headaches or other seeming neurological issues and they want to look into your head they are likely going to want to use a diagnostic procedure that gives more info than an MRI can.
If you walk in demanding a neuro consult, as if you've already self-diagnosed via the internet, the PCP will not take you seriously. You'll be the patient they go back into the team room and gripe about. You do not want to be that patient.
I think it's perfectly possible to assertively, but not aggressively, mention the things you are worried about.
I think your posts give the impression that you don't really trust doctors, and worry about telling them what you are thinking of because they'll act negatively towards you.
I think there is a massive difference between, 'I am scared there is something wrong with me neurologically' and 'I need an MRI like what House does' - stick to the former and you will be fine.
I also think you shouldn't worry so much about how the doctor perceives you. Just be honest.
If you cut out caffeine cold turkey, it will likely give you a massive headache. Caffeine withdrawal is not pretty.
That's interesting, it's the one thing I haven't tried. Paradoxically, it's also the only thing that makes me feel remotely better. I might give it a shot, but it's going to suck. I don't drink a lot in volume, but do so very consistently.
Some doctors can be jerks. No question about that.
But if you start getting frustrated with your new PCP, you'll likely get the same treatment. They don't know you. They don't know anything about your condition. You can't blame them for wanting to run common tests to start with.
That's actually addiction sickness. Your body will feel like shit until you get caffeine, so you repeat and suddenly you can't exist without caffeine.