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I'm in a lot of pain and want to know why.
January 27, 2012 7:58 AM   Subscribe

About two years ago I started having various health issues, and since then, it's all gone downhill. It's also become clear that I need to switch doctors, so I'm asking you, Metafilter, to help me prepare for the new doctor. What's wrong with me? You are obviously not my doctor!

Me: female, mid-twenties, childless. Around two years ago, I started to have IBS-type symptoms (bloating, cramps, irregular BMs, heartburn, gas, etc) as well as frequent yeast and urinary tract infections. Then I started getting painful, achey joints (hips, knees, shoulders, elbows, hands and feet; all day, but especially after the gym, after sitting in a certain position for a while, and upon waking up) and killer back pain. Even more recently, I've had facial (jaw, eye, and even overly sensitive teeth), painful cramps/"charlie horses" that radiate from my hip, down my leg, and to my foot/toes in my left leg only. And within the last few months, I've started getting pretty extreme vertigo (I think that's the right term for it) when walking down stairs.

Also probably not related but noteworthy:

1. I'm klutzy; I frequently walk into doorways, cabinets, tables, etc. I drop things frequently. This goes way beyond normal klutziness, though. I've walked down a straight hallway and hit the wall. I just have terrible balance and coordination.

2. My periods are NIGHTMARES, especially emotionally. I recently took out my NuvaRing and was in tears for NO REASON less than three hours later. This is common for me at PMS time even without birth control.

3. Talking is exhausting. This is a weird one, but I can't see you get out more than a "paragraph" without being winded, especially if I'm doing other things like walking around or cooking (nothing particularly extreme, here). Today I was merely sitting in a chair giving someone instructions and I was almost immediately out of breath!

4. I'm very weak. I ride my bike to work everyday on the same route for about a mile each way, and have been doing so for 5+ years. It's still really tiring and challenging for me. I joined a gym and, although I think my cardiovascular health is fairly good (I can do the elliptical for 45 minutes and "run" about 5 miles), the next day I am WRECKED. Like, I can barely get out of bed due to muscle and joint pains. I'm not doing anything other than the elliptical, and sometimes I do it for as little as 30 minutes. It gets worse if I go back to the gym the next day or the day after, and it gradually gets back to normal (to joint paint and weakness, not so much muscle pain) if I stop going altogether.

Problems I know I have or have had for as long as I can remember:

1. Vitamin b12 deficiency (diagnosed)

2. Very low blood pressure/heart rate, which has resulted in fainting on several occasions. I still get dizzy and light-headed, but I've been able to control the fainting for a few years. (diagnosed)

3. Wolff-Parkinson-White syndrome (occasional episodes of rapid heart beat). I've been to a cardiologist as a teenager, but only wore a monitor for a day. My younger sister wore one for a month and they figured out that she has Wolff-Parkinson-White syndrome, which was corrected via catheter ablation. I'm 99% certain I have this, but it's not been diagnosed. (FWIW, this sister is 6 years younger than me, and I was complaining of these symptoms well before she could talk.)

4. I've also had variations in my thyroid, from hypothyroidism (medicated with Synthroid) to hyperthyroidism.


I'm switching doctors for a number of reasons. I think she is way, way too busy (she's ALWAYS on vacation and it's impossible to get an appointment with her), and because I also think that she is quick to dismiss some of my issues. She will often shrug something off (like yeast infection symptoms, complaints of joint pains and cramping, facial pain) and say something like "I'm not sure why that would be happening. You've stumped me." It's really quite astonishing. I've stopped taking new issues to her because I'm not sure how seriously she even takes me anymore.

And on that note, I suppose my symptoms could be psychosomatic, but I haven't noticed a correlation between my symptoms and the stress in my life. In fact, other than feeling like crap all the time, my life has gotten monumentally better in the last few years as far as personal relationships and my career are concerned. I really have no troubles, and I have tons of wonderful people around me. And I find being in the hospital, getting blood work done, and talking to near-strangers about my issues all pretty humiliating, so I'm not exactly in this for kicks or attention.

My goal is go to a new doctor with some ideas. I'm hoping that I don't have anything serious going on and that I can get to the bottom of this and start feeling better. When looking at my stupidly extensive list of woes, does anything stick out to you? Again, I know you aren't my doctor, and I have an appointment to see a doctor to discuss all this with her. But I nee help collecting my thoughts, because googling endless lists of symptoms with no focus or knowledge is pretty useless. My symptoms have begun to make daily things really exhausting, and even getting into work feels monumental. I'm trying to stay positive, but it's hard. Thanks for your help! ouchithurtsdoc [at] gmail [dot] com
posted by anonymous to Health & Fitness (35 answers total) 7 users marked this as a favorite
 
The fact that talking made you winded has me concerned. I know you've been diagnosed with low blood pressure, but has your heart itself been checked? Or -- since you can do a workout okay -- how about your lungs?

Other than that -- the low energy and the pain sounds an awful lot like someone I know who has fibromyalgia. Her claim is that sometimes autoimmune disorders come in clusters, and that if you've got one, you may find you've gotten another (she does). Maybe something's going on with that.
posted by EmpressCallipygos at 8:04 AM on January 27, 2012


I don't have much advice, but just wanted to say that I'm a female, just about the same age as you and have nearly the same exact symptoms you complain about.

I've also been told there was 'nothing going on with me' and had my concerns easily dismissed by several different doctors, so if I were you, I'd be prepared to argue back that YES, they do affect your daily life and you need to have something done about it.
posted by Trexsock at 8:11 AM on January 27, 2012 [2 favorites]


Not all primary care physicians are created equal. It sounds to me like your PCP should be an internist, not a family doctor or general practitioner. The former specialize in the diagnosis and treatment of disease, particularly multi-systemic diseases. The latter focus more on overall, routine wellness, maintenance of low-severity chronic conditions, administering annual physicals, etc. Internists are also more likely than family doctors or GPs to have extensive connections with specialists and their own hospital privileges.

Each has their place, and if you're basically healthy, a family doctor or GP will be fine. But you're not. So you need to go to a doctor who deals with sick people, i.e. an internist. You should also probably try to go to an internal medicine practice in a big hospital, preferably a university hospital, rather than some county hospital outpatient clinic. You've got some real issues. You want to talk to people with the experience and resources to take those seriously.

You're probably going to need a referral to a specialist too. It sounds to me like you might need, at least, a consultation with a gynecologist (lady bits), a gastroenterologist (GI tract), a cardiologist (heart/blood pressure), an immunologist (auto-immune possibilities), and a pulmonologist (lungs). All of which your internist will be able to provide (or eliminate) once he's worked you up.
posted by valkyryn at 8:12 AM on January 27, 2012 [10 favorites]


Lupus? It could also be a food allergy like gluten intolerance, or fibromyalgia. Some of the symptoms sound like endometriosis or cysts. I would switch doctors, go to appropriate specialists (gynecologist, rheumatologist, etc) and pursue every angle. This is no way to live.
posted by hotelechozulu at 8:15 AM on January 27, 2012 [3 favorites]


I agree with valkyryn about finding an internist and getting referrals to specialists. I found being very specific about symptoms (even the gross ones) and stating how they affected my daily life made it much easier to get doctors to take me seriously.

Also, do you ever get mouth sores? If so, I'd ask for the GI referral soon -- with the IBS-type symptoms, fatigue, and aching joints, it could be Crohn's. (Or it could still be a whole lot of other things. But mouth sores would bump Crohn's up the list.)
posted by pie ninja at 8:18 AM on January 27, 2012


Seconding gluten intolerance. Something you could try on your own is the Whole30. It's an elimination-type diet focusing on whole foods. I've had remarkable success with it, especially when it comes to dealing with GI stuff. (I'm female, 30s, with lifelong digestive troubles that have cleared up entirely since adopting this way of eating).
posted by lizifer at 8:21 AM on January 27, 2012 [4 favorites]


I had many of your same symptoms in my early 20's. I was diagnosed with chronic mono, chronic fatigue syndrome, depression (I was very sad at how sick I was), and a sleep disorder.
I finally found a doctor that tested me for food allergies. Once I stopped eating certain foods, the chronic pain and much of the fatigue went away. It felt like a miracle.
It turns out that I am very sensitive to just about everything. If someone sprays lysol around me, I am sick for days after. I cannot take most medications. I have to be careful what I eat. I cannot wear synthetic fibers or sit on carpet without getting a rash.
I have mild asthma on top of it all.
It took me 5 years to find that doctor. One of my food sensitivities is yeast. Even now, 15 years later, whenever I am under a lot of stress, drink wine and have bread in the same week, I get a yeast infection.

You may want to try cutting yeast out of your diet for a week or two to see if you improve.

Your thyroid problem may be the cause of all of your symptoms. Try to find a doctor that specializes with thyroid issues.

But keep trying. An answer is out there. Don't give up.
posted by myselfasme at 8:22 AM on January 27, 2012 [2 favorites]


I feel for you, since I'm going through something similar at the moment, although it's much less severe in my case.

Yep, a new doctor would probably be in order. Unfortunately, a lot of doctors these days don't truly try to help their patients unless there is some billable procedure they can do. Try asking friends for recommendations. A few years ago I asked a coworker for a recommendation for a PCP and I've never looked back since I started seeing the guy.

Also, what is your diet like? Try reducing the gluten/carbs and increasing protein and (to a lesser extent) fat. I have GERD-like symptoms and there is nothing like white bread or white-flour pastry to make me feel like John Hurt in "Alien." I tolerate foods like eggs and yogurt much, much better, as well as lean meats.

Make sure you get a good multivitamin supplement (don't be afraid to spend some bucks on a really good one) as well as a calcium/magnesium/vitamin D supplement. Try taking a teaspoon of flax or cod liver oil in the morning as well. The first thing I thought of when I read your post was potassium deficiency - try some bananas or orange juice.

Good luck and if you feel inclined, let us know how you make out.
posted by Currer Belfry at 8:25 AM on January 27, 2012


Most of your symptoms could be signs of inadequate treatment of your thyroid issues, especially the muscle and joint pain and the menstrual difficulties. In addition to whoever you switch to as your regular doctor, you should be seeing an endocrinologist. If the first endocrinologist you see doesn't appear to be getting things under control, try another one in six months.

You say you have a B12 deficiency. Is that being treated properly? Are your blood tests for that good now?
posted by artistic verisimilitude at 8:26 AM on January 27, 2012 [5 favorites]


Before you do any kind of gluten elimination, ask your doctor to do a test for celiac disease. It's a simple blood test, but it has to be done before you reduce or eliminate gluten. Celiac disease is tricky to diagnose because it presents in all sorts of ways (and causes all sorts of secondary problems), but also because up until relatively recently doctors were taught that it was incredibly rare and not worth testing for. (It turns out that about 1% of the population has it). Any time you have unresolved "IBS" type symptoms, you should be testing for celiac.
posted by gd779 at 8:28 AM on January 27, 2012 [5 favorites]


1. Get tested for Celiacs
2. After that go on an elimination diet to find out if any other foods are bothering you
3. Have your Vitamin D levels checked and follow doctor's recommended dosage (any symptom that stands out in the winter could be Vitamin D related)
4. Ask doctor for advice on dosage for fish oil supplements. taking fish oil has cured many of my little annoying symptoms including many PMS and emotional overload problems. But you can overdose so ask doctor.
5. clean up your diet so you are eating foods as close to their original state as possible (whole grains not bread, fresh foods not canned etc.)

It sounds to me like bad nutrition or bad absorption of nutrients.

After you get the tests recommended and you fix your diet, see how you feel in a month. I think a lot of your symptoms will go away. If they don't then you can pursue further tests for lupus, etc. But if you get a good nutritious base to your life it might help cure any disease like Lupus that you might have. So you should work on nutrition first.
posted by cda at 8:52 AM on January 27, 2012 [1 favorite]


Just want to second valkyryn's excellent point: for your primary care physician, make sure you get an internist. I have a suite of complicated health issues, and in my experience it absolutely takes an internist to get a handle on them (after years of being dismissed by doctors, myself), as well as to get you to the appropriate specialists.
posted by scody at 9:01 AM on January 27, 2012


I have pernicious anemia -- autoimmune disease that creates a B12 deficiency. I also have Hashimoto's, another autoimmune disease that caused my hypothyroidism. My old symptoms sound a lot like yours.

You didn't say why you are B12 deficient or are Hypothyroid, but it could be related. Celiac and Lupus are also autoimmune diseases.

I had to change doctors and do a lot of pushing to be diagnosed and treated properly. The best specialist I saw was an endocrinologist who knew about autoimmune diseases. I see an internist for my pcp.

So a B12 deficiency caused by pernicious anemia will not be solved by taking B12 by mouth or even sublingually. You need to inject. It's a simple blood test but I'd push for it.

The symptoms sound just awful. I see so much of my own story in yours. Take care!
posted by mamabear at 9:13 AM on January 27, 2012 [1 favorite]


From the OP:
"I've been tested via bloodwork and biposy for celiac disease, and I definitely don't have it. I haven't found any correlation between what I eat and my GI symptoms, except for caffeine and excessive alcohol. I take an antispasmodic, avoid caffeine, and have maybe 2-4 drinks a week. This helps a lot, but if I forget to take the antispasmodic, whew, I'm in pain. Obviously, I do see a GI doctor and we've been very thorough.

Also, one important symptom I forgot: I get dehydrated VERY easily, even when drinking water regularly (which I do because it helps prevent infections and IBS symptoms).

For my b12, I take a 1000mcg supplement daily, and currently my levels are around 500. Without it, they are below 200."
posted by jessamyn at 9:23 AM on January 27, 2012


I agree with the advice above to see out a referral to an internist. There are some symptoms you listed above that I would think would need to be fully checked out. But speaking to the joint pain, back pain, facial pain, IBS symptoms, and yeast infections/UTIs....I had all of those plus near daily migraine headaches for nearly two years before I figured out that it was a food allergy that developed for me later in life. I figured it out by fasting for a day and realizing that all my back and joint pain had disappeared. Figuring out what foods were causing it was a bit harder, but in the end it turned out to be wheat/gluten and caffeine. I can tolerate tiny amounts of both, but if I exceed that I am back to the constellation of symptoms I used to deal with in the past. I also had been to quite a few doctors who really had nothing to offer me in terms of a diagnosis. I never thought of food allergies during those years of misery because I had never had allergies before and didnt realize they could develop later in life. Changing your eating habits so drastically is hard at first, but if it works, the feeling of being healthy again is a great motivator to keep at it. Good luck and I hope you find some answers soon.

Also the advice to be tested for Celiac disease Before eliminating or even reducing your wheat/gluten consumption is spot on.
posted by Rapunzel1111 at 9:23 AM on January 27, 2012


IBS-type symptoms are sometimes accompanied by nutrient malabsorption, which depletes all sorts of micronutrients, which causes further random systemic problems. If you already had a B12 deficiency, it could be getting progressively worse as these symptoms go on.

IBS-type symptoms may also be accompanied by bacterial overgrowth, which is associated with widespread inflammation and will make you feel terrible in all sorts of interesting ways. Throw in a wonky thyroid and you have a recipe for extreme misery.

Before I got to the bottom of my own issues, I had very little energy, odd heart symptoms, anxiety, and (strangely) bleeding gums. The FODMAP diet helped me break the cycle and eventually led me to identify fructose malabsorption - which is currently rather underdiagnosed, and I highly recommend this specific elimination diet, as it casts a very wide net.

IANAD, and of course this is a shot in the dark blablabla, good luck!
posted by tempythethird at 9:24 AM on January 27, 2012 [2 favorites]


I always have trouble talking to doctors without forgetting something. I have been considering keeping a log of symptoms/food/exercise/menses/etc to see if that might pinpoint the problem. Make sue that whatever new physician you get has access to all of your lab tests possible.
posted by annsunny at 9:27 AM on January 27, 2012


Just because it doesn't seem to have been mentioned in any of the other lists of specialists, rheumatologists specialize in auto-immune diseases and many of them have well-deserved reputations as medical detectives who can really figure these things out (because auto-immune diseases are complicated and they see so many sick people). Joint pain is an obvious thing to see a rheumatologist about, and it sounds like yours fits the auto-immune pattern (worse after being still and first thing in the morning).
posted by hydropsyche at 9:36 AM on January 27, 2012 [1 favorite]


Definately get your vitamin D checked, especially D3. I had mine tested for some of the same symptoms. Yep. I was low. I take 5,000 IU of D3 and I'm feeling so much better.

Was tested for gluten intolerance for mystery stomach pains, vomiting, loss of weight. Normal.

Was tested for hypothyroid. All levels minus Vitamind D3. Normal.

Endoscopy for hernia/ulcer speculation. Normal.

CT scan to see if anything else since I had wicked cyst-like pain in the ovaries. No cysts-normal (probably endo flare up with incompatable birth control pill).

Took the vitamin D3. Wheee.
posted by stormpooper at 9:43 AM on January 27, 2012 [1 favorite]


Lyme Disease?

For what it's worth, I had Wolff Parkinson White in my early 20s and had the cardiac ablation. I did not have any of the other symptoms you mention - just the random crazy ass rapid heartbeat.
posted by spicynuts at 9:45 AM on January 27, 2012


So a B12 deficiency caused by pernicious anemia will not be solved by taking B12 by mouth or even sublingually. You need to inject.

Surprisingly, a huge oral dose of B12 of 1000 micrograms every day works fine for pernicious anemia. (Sublingual is not necessary.)
posted by Ery at 9:53 AM on January 27, 2012


I tested negative for celiac too, but gluten is definitely my bugaboo. It took two weeks of complete avoidance before I saw significant improvement.
posted by lizifer at 9:54 AM on January 27, 2012 [1 favorite]


Endocrinologists are GODS in the medical world. Get thee to one! And for goodness sake, stop blaming yourself. I know it's easy for your mind to go there, but don't do that. You're not imagining things, you're just sorting through symptoms with no reference for them, so they're not making sense yet.

I saw something like 20 (mostly asshole) doctors before I got a diagnosis of a rare condition from an endocrinologist. I walked in, frustrated and crying, complaining of pretty intense pain everywhere. He actually got excited by this because it was such a challenge to diagnose — and he told me several, several times that that sort of excitement is very common in his field; those guys are total geeks, and a total geek is exactly what you want. It was amazing. I thought I'd never see a diagnosis, let alone a cure.

My condition was not like yours. Mine was a bone disease marked by wasting of vitamin D and phosphorus. I had a seriously fractured skeleton causing all my pain. You don't have the same symptoms, but I recommend that you talk to your doc about getting a 24-hour urinalysis if you haven't yet. (You collect your urine for 24 hours at home, storing it in a jug in the fridge, which is fun/gross, then you take it to the doc. Simple.) But it'll tell the doctor what you're wasting, and it's one of those tests that can tease out little bits of information that your doctor might not get any other way, according to my doc.

Oooof, good luck. I've been sorta where you are, and holy shit, I'm sorry. I get it. Stay strong.

And if you're in/near Chicago, contact me. Seriously, my doctor is a god.
posted by heyho at 10:05 AM on January 27, 2012 [1 favorite]


I'm also suggesting that you see an endocrinologist (and that your PCP needs to be an internist). I have issues with insulin resistance and PCOS, and I would feel absolutely wiped out after exercising as well, even though I needed to exercise in order to lose weight in order to control the insulin resistance. In some of my researching I've discovered that there are some metabolic syndromes that are connected with insulin resistance and each one is a different variation in how your cells process sugars for energy. I haven't been diagnosed with a specific one yet but it's some interesting stuff (I can see how an endocrinologist would geek out over this stuff!).

I know I also felt terrible all the time (achy, tired, mentally foggy, etc) and when my endo tested my Vitamin D level it was a whopping 13. The low end of the normal range was something like 40. So I was WAAAAAY down there. He told me to get some Vitamin D3 over the counter and take 6000 IU a day until he could check it again. Once the level came back up he told me to back off the 6000 IU but I can tell if I've missed taking it even one day. I've decreased my dosage but I have to keep taking it or I feel terrible. My low Vitamin D may be related to metabolic issues (per Google...I haven't confirmed that yet).

Bottom line...go to an endocrinologist and get every blood test/urine test they are willing to do (I also had elevated liver enzymes which wasn't helping my body process things normally, but that was possibly due to some medication I was on because they have returned to normal). An endo and an internist will be your best bet.
posted by MultiFaceted at 10:20 AM on January 27, 2012 [1 favorite]


I am not a doctor and this is not medical advice, but--nightmare periods, leg and back pain, and the kind of gastrointestinal symptoms you are experiencing could point to serious gynecological conditions that warrant immediate attention. Please see a GOOD, proactive gynecologist who will give you an exam and diagnostic tests if you need them.

I've had good luck with seeing both a internist primary care provider and specialists as needed though the same organization...it can really make a difference to have one complete medical record in front of both doctors and some amount of intra-institutional communication.
posted by anonnymoose at 10:24 AM on January 27, 2012


"Surprisingly, a huge oral dose of B12 of 1000 micrograms every day works fine for pernicious anemia. (Sublingual is not necessary.)"

I found that 1000mcg of oral didn't help -- also tried 1000mcg sublingual Methylcobalamin. Neither worked for me. My endocrinologist helped regulate me though.
posted by mamabear at 10:40 AM on January 27, 2012


I have struggled with some mysterious health problems over the last few years, and like you, my doctors (specialists included) eventually just start shrugging. Many keep suggesting which I try anti-depressants, which I have tried twice even though I don't feel depressed because fuck it why not. But that hasn't helped. I finally got desperate enough to see a naturopath (I am not someone who regularly visits a naturopath) who is also a nurse practitioner. She has helped a lot by paying close attention to the results from various tests (such as diel cortisol variation) that other doctors missed. Often if your testing levels are above (or below) a certain threshold regular doctors ignore the results, naturopaths pay more attention to finer variations and consider the whole picture. I have been tested mutiple times in multiple ways for celiac, which I don't have, but wheat makes my symptoms (mostly weakness, dizziness, fatique, and digestion issues) waaaaay worse. After a few years I finally feel like I'm working on certain things rather than just wondering what the hell is wrong with me. I think it's important to vet naturopaths and to find one you can relate to, but in my experience this has been very helpful.
posted by stinker at 10:45 AM on January 27, 2012


IANAD. Muscle and joint paints, vertigo, instant windedness, weakness =

1. You are not getting enough calories and/or the correct macronutrient ratios, either because you're not eating enough or you're not eating the right things. Are you vegan? Vegetarian? Stop. It's not working for you.

OR

2. You have malabsorption because something you're eating is making your intestines unhappy, and therefore you're not getting enough calories. Try eliminating things for a few days while making absolutely sure you're still getting enough calories from protein, carbs, and fat.

OR

3. You have mono.

These are my guesses, having experienced similar things.
posted by zeek321 at 11:45 AM on January 27, 2012 [1 favorite]


Nthing glutening intolerance. Up to 50% of people will not have positive/abnormal blood test results but will still improve on a gluten free diet. The most common allergens are gluten, dairy, eggs and soy so you could try eliminating those. This is the website my mother directs her patients to for elimination diets. They offer a nutrient powder that I and my mother have used but there's a lot of sugar in it so not so good for yeast infections. (Disclosure: after using his products, my mother is now friends with the founder.)

Have you tried an anti-candida diet? I avoid sugar (except for a small amount of agave occasionally), yeast and alcohol. It's doable. Some of the other anti-candida diets are more intense. Here's a website I like: Diet, Dessert and Dogs. My doctor also has me taking 200 mg of flucanazole every week.

Are you allergic to nickel? A very good gastroenterologist suggested I might have a nickel allergy after hearing about my mild IBS symptoms and pain problems. Turns out he was right. Now I'm trying a low nickel diet. It's really restrictive but I'm two weeks in and this past week has been quite good fatigue- and pain-wise.

Let me know if you have any questions about the above.
posted by carolr at 11:46 AM on January 27, 2012


From the OP:
"Pernicious anemia. This fits everything I have, right down to the abnormal pap smears (which I also forgot to mention, sorry!) without anything else going on like HPV. I'm actually really surprised by this, and a little embarrassed because I've definitely been slacking a whole bunch on taking the b12 recently, which is probably why I've been feeling especially bad. I'll get myself to an internist and rheumatologist stat, and I've already taken my b12. If anyone has recommendations for either in the Philadelphia area, please do share them (or email the address I provided, if you prefer)."
posted by jessamyn at 12:29 PM on January 27, 2012


The Hospital of the University of Pennsylvania has a physician search service, link here.

The Jefferson Medical College link for similar is here.
posted by cool breeze at 1:03 PM on January 27, 2012


I get dehydrated VERY easily, even when drinking water regularly

Some people seem to get low on electrolytes very easily, might try some for this if it wouldn't be contraindicated.

On getting out of breath when talking, it might be worth it to see a voice coach and experiment with some different techniques.
posted by yohko at 3:59 PM on January 27, 2012


"When looking at my stupidly extensive list of woes, does anything stick out to you?"

Oh, yes. Yes. I have way too much experience with situations like this. Almost everything you mention reminds me of the little gang of autoimmune diseases I've had for all my adult life, and of the frustrating and frightening process of finding a diagnosis.

FIRST and IMO most important: The shortness of breath you experience even with talking (!) can come from pulmonary hypertension, which can be caused by some of these autoimmune diseases. THIS IS SERIOUS. Any doctor who fails to take that complaint seriously should have their ears boxed and their medical license shredded. If I had that symptom, I'd be asking for pulmonary function tests and an echocardiogram, for starters, to rule that out. Could also be something like allergies or asthma, but anything that interferes with your breathing to that degree needs looking into, soon.

There are various autoimmune diseases that could cause the wide range of symptoms you describe. I'm most familiar with scleroderma and Sjogren's. These sneaky thugs often travel in gangs, and they're systemic, meaning they can show up in just about any organ in your body. They can subvert your life for years before they leave enough clues to add up to a solid diagnosis.

Some specifics:
Your dental pain and dehydration remind me of Sjogren's -- the chronic dry mouth can cause tooth sensitivity.
Sjogren's can also cause neurological symptoms, like vertigo and klutziness.
The tissue hardening that comes with scleroderma can cause jaw pain.
Scleroderma often causes various forms of digestive havoc. Also, painful joints, especially in the morning.

Scleroderma and Sjogren's are both famous for the potential to cause exactly the sort of "post-exertional malaise" you describe. It's extremely frustrating, because the harder you try to make yourself feel better by doing more exercise, like everyone around you is telling you to do, the sicker you get and the more you doubt the reality of your own experience. You keep getting worse when you think you should be getting better, and you get depressed, and then everyone starts blaming all your problems on the depression, which does make everything worse but it's not the original CAUSE.

Do not put up with a doctor who dismisses your symptoms, either by disbelieving them or by attributing them to depression, attention-seeking or hypochondria. That's unproductive and insulting, and it's bad medicine. Even if you end up with a doctor who is unable to figure out or treat the causes of your distress, the process of listening to you with respect is an indispensable foundation of healing, and it can keep you sane and balanced for a long time even when your health is trying to drive you over the edge.

I agree you should start with a good internist. If they think that autoimmune disease is a possibility, they may refer you to a rheumatologist. For your first visit, make a concise list of all your symptoms, each described with a word or a phrase, all on one page. This saves time, and might make the picture show up more clearly. I'd emphasize the shortness of breath by putting it at the top.

If you have time to read Jerome Groopman's How Doctors Think, there are some great suggestions for good questions to ask your doctor. Stock up on patience and persistence -- good luck!
posted by Corvid at 4:50 PM on January 27, 2012


You've gotten a lot of really good answers here, but the Wikipedia article on Wolff-Parkinson-White syndrome is making me think you should place yourself under the the care of a cardiologist with expertise in Wolff-Parkinson-White syndrome without undue delay:

People with WPW are usually asymptomatic. However, the individual may experience palpitations (an awareness of one's own heart beating in the chest), dizziness, shortness of breath, or syncope (fainting or near fainting) during episodes of supraventricular tachycardia. The telltale "delta wave" may sometimes—but not always—be seen on an electrocardiogram.

You've experienced all these symptoms even though WPW is usually asymptomatic, and that could mean you have a relatively serious case, and, as the article says, "While the majority of individuals with WPW remain asymptomatic throughout their entire lives, there is a risk of sudden cardiac death associated with the syndrome."

If you do get a diagnosis of WPW, your cardiologist can perform risk stratification:

Treatment is based on risk stratification of the individual. Risk stratification is performed to determine which individuals with WPW are at risk for sudden cardiac death.

A good history should be taken to determine whether an individual has factors suggestive of a previous episode of unexplained syncope (fainting) or palpitations (sudden awareness of one's own, usually irregular, heartbeat). These may be due to earlier episodes of a tachycardia associated with the accessory pathway. ...


I hesitate to go any farther, because the connection is much more tenuous, but there seems to be a chance your IBS is associated with WPW through its co-occurrence with another problem:

Wolff–Parkinson–White syndrome is sometimes associated with Leber's hereditary optic neuropathy (LHON), a form of mitochondrial disease.[7]

Mitochondrial disease could be associated with IBS, and a form of LHON can cause

loss of the brain's ability to control the movement of muscles, tremors, and cardiac arrhythmia.[8] Many cases of LHON plus have been comparable to multiple sclerosis because of the lack of muscular control.[9]

As I said, this appears to be a much more remote possibility, but I couldn't bring myself to leave it out because it has such potentially serious consequences.
posted by jamjam at 5:34 PM on January 27, 2012


Wolff-Parkinson-White syndrome.
posted by jamjam at 9:33 PM on January 27, 2012


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