Idiopathic

The BBQ Pit
21

Yes, I feel your frustration, which is pretty much why I hate going to the doctor.

‘‘Hi, I’m having this super painful problem that interferes constantly with my daily life. It causes me to miss work at least one or two days a month, and half the time I must cancel my weekend plans because I feel so awful.’’

‘‘Oh my goodness, that is super serious! Something must be wrong! Let’s run tests on you.’’

(time passes)

‘‘Well, these blood tests came back abnormal, but they don’t really tell us anything. We’re not sure what might be going on. Let’s run more tests! More invasive this time!’’

(time passes)

‘‘Well, we don’t know. Maybe if we ran this test or referred you…’’

I start to get the impression my implied duty as a patient is to bow out and let them work on problems they can fix. So I do. Until it gets bad again. Then I start the process anew.

In the rare cases where they actually figure out what’s wrong, it’s always something completely weird that most normal people never have to deal with. When I was three, I had Scarlett Fever. In 1986. When I was 14 I had an esophageal hernia. When I was 16 I had a severe allergic reaction to UVA rays that required me to be inside for the entire summer. I couldn’t even walk near windows without intense pain and nausea.

I am like the most bizarrely sickly person I know, and even now, running and eating properly on a regular basis, I still am.

sigh

22

I’m in the same boat, only I can’t get any of my doctors to do anything more than run a test and, when it invariably comes back fine, tell me that nothing seems to be wrong and I don’t need a follow up. And this isn’t a limited occurrence. Over the past 15 years that I’ve been having joint and muscle pain, migraines, and numbness/tingling I’ve seen GPs, orthopedic docs, chiropractors, neurologists, and sports medicine docs.

For the first 10 years all anyone ever did was take x-rays, look at them and then tell me nothing was wrong and I should just improve my posture/exercise/sit properly/stop thinking about it. This year I finally got a doc that ordered an MRI and it came back fine. I was told only that I was fine, didn’t need any follow up and sent on my way.

Nevermind the fact I’m still in pain that’s starting to get worse, and am having new pain/problems crop up practically overnight.

I hate doctors.

I hate my body.

23

For about a year I’ve had a daily sensation of pressure around the right side of my face, which feels as though someone’s thumb is behind my eyeball pressing outward. It’s not painful but it’s extremely distracting. Over the past few months I’ve seen an ophthalmologist, a neurologist, and an ENT. Had an MRI, a CT scan, a “nerve block” injected into the occipital nerve in my eyebrow (ouch), and endoscopic sinus surgery, along with a string of medications to treat inflammation, allergies, etc.

Nothing has helped, and nobody’s identified what the problem is. There does seem to be a tendency among doctors to simply rule out the obvious cause (say, a massive brain tumor) and then wash their hands of the problem. Whether they honestly don’t care or are just assuming I’m malingering, I don’t know.

Meanwhile the unilateral pressure, like my mystery deafness, is apparently something I’ll just have to learn to live with.

24

I have idiopathic hives and swelling of the lips and tongue when I eat. Doesn’t matter what I eat, and it doesn’t happen every time.

Not allergic to anything (even pollen, grass, mold, etc) but I have allergy symptoms.

A friend of mine has idiopathic anaphalaxis. She can DIE at any time, just because her body decides to swell up and try to kill her. She carries an epi-pen at all times.

Makes mine feel a tad less serious, you know?

25

Wow, it seems there are even more people with unknown-but-not-serious-enough pains (and unknown-but-definitely-life-threatening!) than I had any idea about. Good to know I’m not alone.

Weft

26

I’ve never heard of the term “idiopathic” before. I assume that is a good thing, as it means all my problems have had explicable origins.

27

Well, for me it’s pretty much “We’ve looked into your problem and nothing’s turned up that appears to be a real risk to your health or your life. Otherwise we don’t have any real firm idea why it’s going on and don’t really know what to do next, other than leave it alone and see how it goes. We could order some more tests, try some different drugs, or do a few interesting procedures, which frankly are probably a bigger risk to you than whatever it is that you might actually have. And what we’re offering now is expensive, too. And painful and/or addictive. Whadda ya say?”

There are a lot of legitimate symptoms out there that don’t seem to have a cause that we understand. And if we can’t help you with them, we should at least not hurt you while pursuing them.

28

But what about sanity? Shouldn’t doctors have some level of responsibility to help find a way to manage pain or issues that interfere with quality of life even if there is no direct risk to the patient’s health?

Should a patient reasonably expect a doctor to help manage symptoms, even if they cannot find a cause or definitive health risk? Just because your tests don’t find anything that presents a major risk doesn’t mean I’m not still hurting.

This is the issue I keep running up against. I go to the doctor because I’m in pain, so they run some tests. Tests show up fine, and they brush me off - but I’m still in pain. So now I’m none the wiser, still hurting, and out the money for the visit and the test.

29

Holy shit! :eek: If I had to make a list of the scariest fucking illnesses in the world, that one would be up there!

30

Chronic non-malignant pain is a big problem. Treating pain is a specialty unto itself. A specialty that certain pain patients should be able to avail themselves of.

And one of the key rules in treating chronic pain is that if you don’t know what’s causing the pain, you want to avoid using certain medications to treat it. Particularly opiates, because they tend to be ineffective in the medium to long run, and the problems they cause tend to exceed their limited benefit.

Even if the cause of the pain is known (and known to be non-threatening), opiates are not the first tool in the tool box that one would reach for to treat most cases, for the reasons mentioned above.

Other pain treatment modalities should be considered, such as physical therapy, home exercises, stretching, TENS units, ice/heat, massage, relaxation, meditation, biofeedback, even pain support groups.

Other medications that sometimes are appropriate to use with chronic non-malignant pain include nonsteroidal anti-inflammatory pain meds like ibuprofen or similar, alternating with acetaminophen.

Other pain nerve modulators which may be effective include things like amitriptylene, gabapentin, pregabalin, carbamazepine, and others.

Nerve blocks can be of benefit to some.

Acupuncture has been actually shown to be of possible benefit.

Your doctor should be able to give you some direction in how to implement these sorts of strategies, if not by himself, then via a referral to a pain clinic.

I’ve had best luck with pain clinics run by physiatrists. They tend to take a very holistic approach to the process, in appropriate ways.

I’ve had mixed success with those run by anesthesiologists. Sometimes, if the pain can’t be treated with nerve blocks, I’ve seen these patients end up on large doses of narcotics, without other methods being explored.

Avoid doing what my patients have done: Threaten to sue their physician for not giving them oxycodone for their non-malignant pain, saying they’re being deprived of their constitutional right to be pain-free. :rolleyes:

Chronic pain’s a problem for which we don’t always have goods answers.

Good luck.

31

Or it means your doctor hasn’t used the term in front of you. I had not heard it before reading this thread, but my neurologist doesn’t know what caused the lesions in my brain. The tests for MS have all came back negative (Although he has not done a spinal tap yet, because all of other tests are negative and the lesions haven’t grown in the last 3 years.) and are not in typical areas of the brain for the beginning stages of MS. I have to admit, the problems I have to deal with are much better than this:

32

Take heart… doctors misdiagnosed DH for the majority of his life with idiopathic breathing difficulties, and simply treated the symptoms of his problems as they arose. Wasn’t until two years ago, at 47, that they did a test (at his insistence) that revealed he has cystic fibrosis. When confronted with the results of the tests, his docs said “well, we eliminated that as a possibility almost 30 years ago because you were still alive.” :eek:

So hang in there for another 30 years or so, and you’ll be just fine.

33

To be fair to them, 30 years ago, if he was alive at 17 it did indicate he didn’t have it. The people with it now have longer life expectancies, but in the early 80s a woman at college didn’t make it to 19 because of her CF.

34

Average life expectancy remains around 30, with early detection and treatment.

I can almost understand why they missed it between 17 (when he left home and significantly decreased his visits to the doctors) and 47; just since we’ve been married they’ve labelled him with every breathing problem under the sun but always came back to ‘it’s not actually X, but we’re going to treat you for it anyway just to see if it helps.’ But they missed it for the first 17 years of his life in favor of the “idiopathic” diagnosis- he actually has a copy of an X-Ray report from when he was about 10 years old, describing objects in the lungs that resembled ‘shotgun pellets.’ The accompanying comments from his own doctor include “were patient younger, tests to rule out cystic fibrosis would be recommended due to similarity of symptoms and objects found on X-Ray.” Instead of pursuing that line of thinking, they drilled holes in his sinuses. :rolleyes: It wasn’t until his mother sent him some old paperwork that he found that report, decided to look into it, and got the diagnosis.

We’re well aware that he’s a medical anomaly- he was hospitalized for over a month this summer, and every medical person that walked through his door was all “You were JUST diagnosed two years ago? You’ll be FIFTY in February? Do you know you shouldn’t be alive???” :dubious: They asked tons and tons and tons of questions about his treatments over the years, hoping that he may offer some insight into how to help other folks. I just stick with “Have you MET him? He’s too MEAN to die!” :smiley: But the whole experience makes me a lot more sympathetic to folks who can’t get a firm diagnosis for whatever ails them.

35

You get used to it.

I’m lucky. Mine comes on slowly, so I have a lot of warning. Big downer? Though I can take epinephrine, I cannot have coritcosteroids because for me, they cause anaphylaxis.

Guess what they usually give you after the epi to get the swelling to go down?

36

Friend was in the Navy. Navy has great medics… and terrible doctors.

Friend got a cold. Couldn’t talk except in the horsest whisper. Goes to doc. Doc examines him for two hours, runs all kinds of wuick inspections. FInally comes in and says, “Alright, we know what it is! You have Acute Aphonia.”

Acute Aphonia. :rolleyes:

Acute. Means Very.

A-phonia. Means No-Sound.

Friend looks doc in the eye, gravels out, “Gee, I never could guess I can’t talk.”

Some more go around happens, and he finally gets something for it and takes to his bed for a week.

37

That word… I do not think it means what you think it means.

Acute
Though I was amused to see this little tidbit there:

I never knew Acute could be confused to mean “severe”, never heard it that way. Ignorance fought on both ends.