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[Fibromyalgia], Lycanthropy and other mythological diseases
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Then security showed up, and she jumped out of bed, dressed herself, and stormed out the door on her own two feet.
Don't let this dissuade you from getting a sacral massage though, it is the fucking tits. Sooooo goooood.
Just, you know. Anyone who tells you it's a treatment for your your Feline Butt Hobbits or whatever is a fucking quack.
Just make sure you don't fall into the trap of adopting cynicism and wailing on a genuine sufferer.
But man, expecting practitioners of any sort to deal with this sort of crap day in and day out and not become extremely cynical is a pretty tall order. Hell if I have any sort of solution, but that there is a problem.
I have a solution but Reagan fucked it up big time.
Thing is, Cynicism taking over results in the people who NEED something NOT getting it, while the people who do not eventually WILL.
I try not to, but it is a risk of the profession. But like I was saying, the people looking to score drugs are generally easy to spot. They have an MO, and it's almost always:
- Arrive at triage with a very vague and generalized complaint of pain,
- Quickly alert staff to a prior history of fibromyalgia, lupus, chronic fatigue, migraines, et al . . .,
- Tell the staff you're allergic to all painkillers except dilaudid, demerol, and phenergan,
- Bitch and moan during the discharge that the hospital hasn't done enough for their pain.
People who really suffer from those things present completely opposite of the seekers. They tell the triage nurse exactly where it hurts, what the best (and almost always non-narcotic) combination of drugs to help are, and never want to stay in the hospital longer than they have to, a la, "I'm having a terrible migraine, it happens all the time, and I need compazine, toradol, and reglan."
Patients like that usually have doctors tripping over themselves to treat.
This is a bit specific, but in my case and specialty, I should never see someone with chronic pain in one of my ERs. Chronic pain is rarely an emergent condition, and if you have an actual diagnosis of fibromyalgia or whatever then you are more than qualified for treatment with pain-management doctors and clinics.
What most doctors now seem to do is:
- Check the patient's records for drug abuse and frequent visits to the ER
- Run the absolute minimal amount of tests necessary to rule out whatever complaints the patient may have
- Intially treat pain with non-narcotics
- If tests are normal, discharge patient with very small (no more than three days worth) prescription for narcotics
It seems to work out alright.
Really weird that you say this, because I had what they could only at best figure to be an a-typical migraine with complications and during the days I was in the hospital we tried a good combination of all the above drugs. The only winners that put a dent in the headache? Dilaudid and phenergan. I still have a bit of the headache left, but now I'm super worried that if something happens again and I have to go back, I'll be treated like a junkie because I know what worked for me the last time.
If you have to go back, just make sure you don't tell the staff you're "allergic" to other remedies. Just say, "Hey, this has happened before, and dilaudid and phenergan does work best, but I'm open to other treatment and I'm not just looking to score."
Hospital staff appreciate honesty, above all. I've even seen honest junkies score just because they didn't try to bullshit the doctors.
Allergies to one brand of drug in preference of a stronger drug in the same family, well, that's going to get you tossed out the door with an aspirin.
Actually, my suggestion is to get a referral to a pain management specialist. Get the PMS to write a letter saying something like, "[your name here] suffers from chronic intractable migraines, and the only therapy that alleviates them is an injection of Dilaudid and Phenergan. If this letter is being presented to an emergency department, please provide [your name here] with the medication listed above, and then send all records relating to his visit to my office. My contact info is listed below." Make a few copies of this letter and bring them in with you any time you need to go to the ER.
Honestly, while Atomic Ross's advice is good, it's not going to work every time, because some EDs and ED docs are stricter on opioid use than others.
It's not quite that simple.
People - doctors included, especially GPs and ER docs - often use the terms "opiate" and "opioid" interchangeably, even though there are major differences between drugs directly derived from opium (morphine and codeine) and synthetic drugs that have similar mechanisms of action (Dilaudid, Demerol, Ultram, etc.) Technically, "opiate" should only refer to the first category, and "opioid" should refer to the second, but language isn't always precise.
There's a pretty well-known side effect from morphine - itching and rash - that's caused by a histamine reaction. There's also a rarer side effect of hyperalgesia - increased pain. Sometimes morphine and codeine cause these reactions but the synthetics don't.
So it's quite reasonable, actually, for somebody to say "I'm allergic to morphine and codeine but Dilaudid works for me."
Edit: that also means keeping in mind that a lot of people say "allergic" when they just mean "i get really bad side effects."
Exactly. Codeine allergies are actually very common. But also "bad side effects" =/= "allergies," so saying so to hospital staff isn't likely to grant you much sympathy. Having a morphine allergy is one thing, being "allergic" to everything but dilaudid is another.
I think you're forgetting that while chronic pain is rarely emergent in the general population, it can be frequently emergent for a select few chronic pain sufferers.
The big problem with the line in bold is that it can take several weeks to get an appointment at a pain management clinic. In fact, my wife has an appointment for one in late October that she scheduled while at a doctor's appointment in August. That was the soonest she could be seen.
If you have someone with legitimately debilitating pain, is it reasonable to turn them away from the ER when their appointment with a PMS is a month or more out?
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Do you mean as a specific solution to needing an ER visit between GP visit and SMP visit?
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Dude. You probably have both candidiasis and celiacs disease. brain fog, not sleeping, lack of energy, and joint and muscle pain - all classic candida symptoms. lack of energy, joint and muscle pain, migraines - all celiacs disease. And they occur together very frequently (celiacs causes an opening for candida overgrowth). Celiacs is a genetic disease. I have it (intestinal symptoms), my mom has it (40 years of daily migraines, feeling super shitty all the time), and my sister has it (identified before obvious symptoms). So if this is something thats been running in your family, there is a very very strong possibility you have celiacs.
Take what I'm saying seriously. You need to go on an elimination diet. No gluten. I would also eliminate all sugar (candida feeds off it) for the time being. also no coffee, alcohol (also for candida). A candida restricted diet is a huge pain in the ass, so you might just want to do gluten free first and see what happens. So that really depends on how committed to this you can be.
Go gluten free for 3 months. Your life will change (probably).
I tested negative for the blood test, it is completely non-conclusive and is useful only for positive results. Gives false negatives all the time (ditto for my mom).
The biopsy is more reliable but not 100%. I never got it done because I had gone gluten free for like a month before that option was presented to me, so it wouldnt have told me anything most likely. The genetic test is obviously not something you can use to diagnose.
So if you bring these concerns to your MD, he'll probably want to get you tested. That's fine, but understand that a negative does not mean you don't have celiacs (your doctor probably will not know this). So go gluten free anyway, you wont ever know for sure until you do the diet.
It's probably time to try an elimination diet again. I tried a gluten free diet for two months about two years ago with pretty minimal results. I've had extensive bloodwork done, and while Celiac's doesn't always pop up with testing, the only reason CFS is on the table at all is because nothing else popped up.
I'm ready to revisit some other possibilities, though with the whole retrovirus thing as of a week ago, I might wait and see what that brings. One of the major flags that it's CFS is the majority of my symptoms presented after a pretty nasty allergic reaction to fluroquinolones. I was prescribed those to fight seasonal bronchitis, and ended up with a pissed off bout of bronchitis on top of severe flu-like reactions. I never really recovered from it. The hallmark of CFS is post-infection.
Calm down a bit dude, you're coming off as a hypochondriac in this post.
He totally does, but it's not crazy to try a dietary change, it's not exactly radical treatment to try eating more meat and veggies and fewer grains for a month. Also remember though, that a positive test result isn't necessarily always accurate either.
Edit: "Try every test, and if the doctor says it's negative do not believe him" sounds a little bit like reaching for a positive diagnosis. That said, since your advice is dietary change, I don't think it really matters.
Edit Edit: Which actually reminds me, as a general bit of health advice: If you do enough tests, you will find something abnormal. This doesn't mean that you have anything wrong with you, necessarily. It just means that after 20 tests that are 90% accurate, the odds that you'll get at least one false positive are pretty damn high. Also, a test that gives a lot of false-negatives is not "useful only for positive results".
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What are you talking about?
/shrug
It's the truth in this case. Sorry if I sound like a crazy person, but everything I said is accepted fact.
The only way to tell for sure is by going gluten free. period.
Even if thats not the answer to his health problems, he'll still have eaten very well for 3 months, and probably will have lost some weight in the process.
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Exactly. Chronic pain conditions can involve flare-ups or secondary symptoms like nausea and vomiting that can definitely be emergent.
Well generally speaking for confirmation you need to re-introduce gluten at a later date to confirm the diagnosis. Not all the symptoms will come back immediately, but your digestive system will freak out.
But I'm really doubting that his various symptoms would disappear from a better in general diet.
Ehhh . . . "emergent" is a tricky word. People in the industry like to define emergent as "life threatening." Pain, even excruciating pain, without much alteration in biological processes (i.e., not stemming from injury or organ failure) doesn't usually meet the clinical definition for "emergency." Which is why most ER doctors don't treat chronic pain with much more than interim prescriptions for vicodin and the like.
Fair enough on the term "emergent." Would "urgent" be a better word?
I mean, let's say I go to the hospital with a really bad stomach flu and I haven't kept solid food down in 24 hours. That's not necessarily life-threatening - I'll eventually get over it - but it's pretty excruciating in the meantime.
Some people have migraines or fibro flares that bad. Now, I recognize that those people are a pretty significant minority, far smaller than the number of people who claim to need strong pain medications, but they are out there (I lived with one).
Oh, yeah. Most ERs have a five-tier system of severity rating:
Resusitative, Emergent, Urgent, Non-urgent, and Well/NoEMC.
An inability to stay hydrated and fed without medical intervention actually rates as more urgent than chronic pain, generally. Electrolyte balances break down, which can lead to organ failure and cardiac disruption. Asymptomatic pain, on the other hand, generally isn't life threatening unless it's making the patient suicidal, and thus receives less immediate care.
Which is the kicker about getting proper treatment in an ER. It's lose-lose, as far as most doctors are concerned; if they're faking they don't need treatment, and if they're telling the truth they still aren't going to die. Most ER doctors will quickly tell you that the "E" in ER stands for "Emergency," and anything less than that doesn't meet criteria for treatment.
Unless you show proof of insurance, natch.
Oh, okay. I think that's where the disconnect is.
I mostly agree with you. Asymptomatic pain is not strictly speaking an emergency. My point is mostly that migraines and fibromyalgia in particular can involve nausea and vomiting and it is these emetic symptoms that demand emergency treatment, and antiemetics alone might not be enough.
Well that's a horse of a different color. If you stroll into triage and say your fibromyalgia is making you throw up your toenails, and has for a week, you'll get anti-emetics and fluids all day long.
But narcotics actually make you more nauseated, so saying something like, "The only thing that works for my nausea is dilaudid," is only going to get you dirty looks and a prescriptionless discharge.