Still sick, getting worse, and can’t deal
June 27, 2014 5:32 PM   Subscribe

I’m dealing with a variety of debilitating health problems, and I'm having trouble coping and getting to the bottom of the cause. I’m toward the end of my rope and have had too many breakdowns to count.

I’ve asked for help before here. I’m still searching for answers so my question is three part:

1) What are some tools, language, mantras, etc that I can use to help advocate for myself when dealing with doctors?
2) How do I cope during the times when I can’t function normally or sometimes at all?
3) What questions, tests, or treatments should I be looking into besides what I already will list?

24 years old, have had stomach problems my whole life, put on formula as a baby for failure to thrive, had an ulcer at 4, barium swallow at 11ish, stomach scope in 2009.

My health has been going downhill since about 2009, when I developed reactionary hypoglycemia and low blood sugar problems, I began having stomach cramps, and began having severe stomach pain (again). I had a scope and was told I had GERD and to take Prilosec, and that I probably had mild IBS.

Over the past two years all my symptoms have gotten extremely worse to the point where I can’t function some days. I have debilitating stomach pain, loose stools, increased bowel movements, severe heart palpations, heart racing, and pre-ventricular contractions. I feel like I can’t breathe or catch my breath. I get headaches, had a severe migraine last month. I have severe nausea. I have trouble focusing. I get more anxiety and nervousness. I also get REALLY hot often. Which is unusual for me. That’s not even a full list.

Things I’ve done recently:
-Take Prilosec once a day and eat regularly to manage blood sugar. Drink lots of water. Avoid caffeine. No drugs or alcohol. Rarely take any pain meds, since they’re bad on your stomach.
-Had a holter monitor that diagnosed the ventricle contractions. My GP stated “Yeah, you’re having a lot of them and your heart rate even today was 107.”
-Met with a good GP – Low iron that’s been raised with OTC vitamins, all other standard blood testing (including thyroid) was normal. She was very surprised that it was normal.
-Tested negative for H Pylori.
-Was tested for celiac (genetic and blood test) and was negative.
-Cut out gluten, lactose, soy, and eggs with improvement with overall stomach problems. My doctor has approved of cutting out these items as I have maintained/slightly gained weight and seen some improvement.
(They were, well, really really really bad and disgusting. I was severely bloated.)
-Met with a GI who suggested a stomach scope and colonoscopy for possible Crohn’s. But didn't have many ideas beyond that.
-Getting a small breast lumpy area checked that’s flared up with pain over the last couple menstrual cycles, but I assume it’s unrelated.

I have my next follow up scheduled all the way out on the 11th. At this point we’ll probably be discussing getting on Beta Blockers, although I’m nervous about that since I don’t want to mask and symptoms. Plus I'm small and have strong reactions to meds, so I'm nervous about side effects. I feel like I want to push more testing for my thyroid since it seems like almost classic hyperthyroidism, all the way down to not being able to handle heat like I used to.

I’m also really nervous about the prep and recovery for a colonoscopy seeing as how I can’t even function regularly. I’ll probably be curled up on the bathroom floor feeling like I’m going to pass out. (Did I also mention that I have severe emetophobia so the idea the prep could make me puke is terrifying.) The GI doctor said he would take biopsies. I may want him to look into rare conditions as well like Whipple’s. (I mean, test away! Right?)

Anyway. I need help. I had to leave work early today because my stomach basically feels like I drank battery acid and tums, pepto, water, and food haven’t put a dent in the pain. I can’t deal like this every day and really need help, ideas, and words of encouragement.

I often have trouble explaining to a doctor just how bad everything is. I guess it’s a holdover from putting on a tough face at work. I just really want to be able to do normal activities. I'm honestly really scared that it's something incurable or with few treatments. If I'm already this sick on a regular basis, I'm not sure how to deal with knowing it will get worse. I want to live to my full potential and my body is holding me back.

anonmefi14 at for followups.
posted by anonymous to Health & Fitness (13 answers total) 4 users marked this as a favorite
Ok, this might sound completely nuts, but I heard a RadioLab a few years ago about this doctor, Jasper Lawrence, who was researching hookworms as a treatment for a variety of health issues. It has a very high degree of efficacy in a number of allergy and auto-immune disorders, including IBS and Crone's. The worms have minimal and temporary side effects, just an upset stomach for a week or something. They can live for up to 10 years and you are symptom free while they are in your system. They are easy to rid yourself of with certain antibiotics if you change your mind.

I was just reading some follow ups about it -- the FDA now wants him to go through a huge pharmaceutical testing phase instead of classifying the worms as a supplement so he had to move his operation to Mexico. I have a fairly low opinion of the FDA and their motives for things, so this does not entirely surprise me.

I'm not saying this is the complete answer to your problems, but if you are looking for a way to get some relief from your symptoms, it may be worth looking into. You can read more about how it works at the website I linked above.

I also wonder if you may not be experiencing some of the less common side effects of Prilosec..I took that for a while when I was having acid-reflux, and it made me feel AWFUL. Heart pounding, nightmares, increased sucked. Do you have those symptoms when you don't take the Prilosec?

It also sounds like one of the issues you are dealing with is your anxiety levels...have you tried meditation or other relaxation exercises? While not a full solution, they may be good tools for you to be able to cope with some of your anxiety around your condition and allow you to function a bit better in day to day life. You can also look into prescription solutions like Xanax.

I am so sorry you're dealing with this, and I hope you can find some solutions.

Good luck :)
posted by ananci at 6:01 PM on June 27, 2014 [2 favorites]

Sounds like you could use something for the anxiety to go with a proper diagnosis of the physical problems. I would suggest you tell your doctors about the anxiety regarding appointments and procedures and see if they'll prescribe you something like Ativan. This will help you keep together at appointments.

Given your description of your symptoms you really need that colonoscopy. You probably won't puke with the prep, but it won't be fun. Again, ask what you can take to get through it.

Therapy will be helpful so you have someone on your side. Mindfulness based cognitive therapy is good for patients in pain.

Good luck
posted by crazycanuck at 6:02 PM on June 27, 2014 [1 favorite]

Seconding that it is imperative--like, priority number one--to get your anxiety under control while you work out the cause of your physical symptoms. You sound like you're coping with a great deal of unresolved physical pain from an unknown source; there's no need to suffer mental anguish at the same time, and it can only improve your life to resolve it. Be kind to yourself.
posted by jesourie at 6:11 PM on June 27, 2014 [1 favorite]

Honestly, it is hard for me to believe that you haven't had a colonoscopy and upper endoscopy yet! Please don't be afraid -- you should be excited, because colonoscopy is a powerful diagnostic tool and it could be the first step in getting a solid diagnosis and treatment.

I'll try to address your specific questions first...

1) What are some tools, language, mantras, etc that I can use to help advocate for myself when dealing with doctors?

As a young woman, I was raised to be polite, pleasant, cheerful, to put others at ease, etc. For a solid 18 months of my own health crisis, when a doctor entered the room and asked me, "How are you today?" I would reflexively respond, "I'm well, how are you?" Even when I was curled up in a ball in pain and wearing a diaper. I know most people are not quite at that extreme, but recognize that talking to doctors is a totally different "social" interaction than pretty much any other. While it's important to be respectful, there is nothing rude or dramatic or inappropriate about saying exactly how you feel without sugarcoating. For that matter, do your very best to say exactly what your symptoms are, without hedging or euphemizing. Doctors have seen it all, really.

I always bring a small notebook or pad with a pen to my doctors appointments, and I have a list of questions written on the pad that is visible to them. I take notes while we're talking and I make clear that I want to ask the questions that are written on the sheet of paper before the appointment is over. The flip side of this is that I take time before the appointment to write a list of questions and think them through so that while I demand time from the doctor they don't feel that I'm wasting it.

Finally, if there is any ambiguity about next steps at the end of an appointment, absolutely ask explicit questions, and do not leave until you get the answers you need. A lot of doctors do not manage administrative tasks themselves, so they will say "You'll get the results," but not how or when, or "I want you to have an MRI," but not provide instructions about how to schedule it and how to follow up afterwards.

In my experience most doctors' offices have someone who can be a bit of a gatekeeper -- a patient coordinator or a PA, frequently -- and staying on their good side and leveraging them for that kind of information can be essential.

2) How do I cope during the times when I can’t function normally or sometimes at all?

Prioritize, prioritize, prioritize. My career and my health insurance were the most important thing in my life, so when I was sick, work was literally the only thing I did. I went to work, I came home, I ate something (sometimes), and I went to bed. If you can't make it through the workday, and I have been there too, start quietly exploring the options that are available to you. I was very lucky and I was able to take short term disability without jeopardizing my job or my health insurance. I was incredibly embarrassed to take it, especially since my career was so important to me, but I really needed to. My manager at the time was incredibly supportive and he told me the following: In life we juggle lots of balls: family, friends, career, health. Most of the balls are made of rubber... if we drop them once in a while, they bounce back, but health is made of glass. No one will judge you for treating it accordingly.

3) What questions, tests, or treatments should I be looking into besides what I already will list?

I think you need a doctor you trust and to stop taking on so much stress to be your own doctor. Are you being treated at a large teaching hospital? If it's at all possible, I strongly recommend doing so. Doctors at teaching hospitals are much more familiar with unusual cases and much more interested in diagnosing them. They are more proactive and they work more closely with their colleagues in other specialties. In order to receive adequate care I had to leave my suburban doctor and start commuting a couple of hours in each direction to see a specialist at a teaching hospital. It was a hassle but in retrospect it was absolutely necessary.


Now, the words of encouragement.

I had non-specific health problems and especially GI issues through my life, with occasional periods that were very bad followed by relatively quiet periods. The bad times got worse in my early 20s and ultimately I was diagnosed with ulcerative colitis when I was 24. In order to get diagnosed I had to see three different doctors, and there were times before my diagnosis when I felt so scared and weak that I thought I was dying. Times after diagnosis, too, to be honest. I had an extremely aggressive course of disease and in less than a year I was hospitalized and required major surgery. As I mentioned above, I had to go on disability leave from my job. I was in diapers. I couldn't live alone because I was too weak to take care of myself.

And... now I'm fine. I recovered well from surgery and I returned to work and normal underwear and my own home. Life is different; illness changed me, like all experiences do. I decided to leave my job and go back to school, and for the first time in years I felt healthy enough to take that risk (and my doctors agreed). Most people at school have no idea there was ever anything wrong with me. Some people know because it's part of my story and sometimes I feel the situation warrants talking about it. But by and large I am, as you put it, living life to my full potential. I know all about feeling that my body was holding me back (I've probably listened to this song one thousand times), but... I got through it. I believe you will too. Humans are amazingly adaptable and resilient.

Finally, therapy. There are therapists who specialize in working with chronically ill populations and it helped me a lot. Anxiety and PTSD go hand in hand with chronic illness and a good therapist can help you learn to manage that.

Please feel free to MeFi message me any time. Best of luck to you.
posted by telegraph at 6:12 PM on June 27, 2014 [8 favorites]

Diarrhea + heat intolerance + fast heart beat + anxiety could definitely be a thyroid issue. You should ask your doctor to check, it's a pretty standard blood test.
To piggy back on the previous two posters, any stressful, chronic medical condition can lead to anxiety issues, which in turn can worsen GI symptoms. Seeing someone to address your anxiety symptoms doesn't mean your medical problems are 'all in your head' and might help your day to day functioning a lot.
Regarding dealing with doctors: write things down. Questions to ask later, things they suggest, what tests they're ordering, what medications you've tried and what reactions you had. Also, don't accept vague answers. Ask questions, even if you think they sound dumb, until you understand what they're saying. Explaining things is part of their job and if your doctor isn't willing find one who is.
posted by arrmatie at 6:13 PM on June 27, 2014 [1 favorite]

I missed the edit window but I wanted to add that you should be as insistent, assertive and obnoxious as you need to be with your doctors. As long as you aren't asking for abusable medications they're unlikely to refuse to treat you and, based on my experience, pretty likely to cave to get you off their back.
posted by arrmatie at 6:23 PM on June 27, 2014 [1 favorite]

I tend toward medical anxiety, and often have trouble asserting myself with doctors. The vulnerability that comes with serious illness often makes this worse. Your intense medical anxiety and high level of fear just radiates from your question, and I'm so sorry that you're dealing with this.

Is there any way you could get one or more people in your life to be your medical advocate? Doing this has transformed my ability to cope with medical stuff. I basically no longer go to medical appointments without my advocate. The advocate's job is to help you make a plan for each appointment and prepare a written list of what information you want to convey to the doctor. Your advocate is responsible for the list so you don't have to remember everything, taking notes on what the doctor says, checking on what/when next steps will happen. If you tend to minimize your symptoms, your advocate can step in to emphasize how seriously ill you are. If a doctor is dismissive or condescending, your advocate can call them on it. And so on.

The problem is usually finding who can do this. It could be more than one person, some combination of a partner, family member, close friend. Given how high your anxiety is you might consider hiring someone to help you; if I were in your shoes I would. One way to find someone might be to talk to some birth doulas - this may sound crazy but part of what doulas do is help women navigate the medical system around childbirth, so they have the approach that could help you.

Good luck, you can figure this out.
posted by medusa at 7:14 PM on June 27, 2014 [1 favorite]

How are your hormones? Are you on hbc? Many of the symptoms you listed can be related to an hormonal imbalance (particularly heart racing, fast resting heart rate, loose/increased bowel movements and headaches).

Secondly, you mentioned you are small. This could be a crucial factor w/r/t testing. Every test has a range that is based on "an average person" - now for small people the threshold to test positive could be too high. To illustrate my point with an example: maybe very small amounts of gluten send your body into overdrive while the blood test only detects a little amount of antibodies, an amount that is not considered within the range of being celiac. Not the best example, but hope you understand what I mean. Apropos, celiac - it is diagnosed via biopsy. The blood test is not reliable enough.

Another thing to be mindful of: loose and increased bowel movements can lead to dehydration. Chronic dehydration can present with many of the symptoms you have. Make sure you are well hydrated at any time. Also nutrient loss due to frequent trips to the bathroom might be an issue. Especially for water soluble nutrients. Did your recent blood test include vit D? A vitamin D deficiency can also lead to serious autoimmune chaos.

Get better soon & good luck!
posted by travelwithcats at 7:50 PM on June 27, 2014

Others have said most of this, but:
Prep for your appointment, have a list of specific questions and take notes. And if you can, definitely take someone with you. This made a huge difference for me, helped me feel calmer (I had some fear due to a previous asshole doctor), helped me keep on track with questions and helped me process and understand what the doctor was saying.

Also, if you can, be very clear about how bad the symptoms are and how they effect your ability to function. I think making this as clinical as you can, either by trying to research symptoms online so you are using the most specific language you can, and by tracking symptoms/severity. In my experience it's better if you can do this without breaking down and crying or going into your fears about how this will effect your life. There is an unfortunate tendency in our society and by too many in the medical profession to give less credence or weight to complaints of "hysterical" females. And just FYI this doesn't fall neatly along gender lines, my most traumatic experience with this was with a female doctor, and my kick ass angel docto is a guy.

Which is also why I personally be careful about bringing anxiety into the diagnostic picture. In my experience, when the basic tests don't show anything, some doctors will latch on to any hint of mental health problems as an explanation, rather than continuing to dig or admit they don't know what's going on.

This probably doesn't have such a big effect if you have a clear diagnosis for a well established disease (ie not something like fibro) but until you do I'd be cautious. Sorry to be a downer on that. But being a female patient with a somewhat mysterious and difficult to diagnos disorder can be a difficult place to be.

I don't have knowledge of gastro issues, but on the hopefull side I would say that it sounds like you still have a lot of promising (for treatment and relief) avenues to pursue. Try focusing on this as much as you can. Also being sick can be a full time job. Try thinking about it strategically, research, planning (investigate a then b) and most important give yourself credit for how hard all of this is and how well you're doing that your still pursuing answers.

You can do this.
posted by pennypiper at 8:08 PM on June 27, 2014

I'm very sorry that you are going through this--it must be awful to feel sick for so long with no clear answers.

I get the sense that you have a great deal of anxiety about your health, and I would guess that you spend a lot of time on line researching various conditions in an attempt to get some answers. If this is true, I empathize for I have the same tendencies myself. But this is a bad idea, especially for someone who tends toward health anxieties.

On the one hand, yes, you want to be a knowledgeable and assertive patient who won't let egomaniacal doctors walk all over you, but on the other hand, these attempts to diagnose yourself will ramp up your anxiety and may take you down the wrong path medically. By pushing for certain tests, you may end up having unnecessary diagnostics performed which can lead to false positives for various conditions, which can lead to further invasive tests, and so on. You want to find a knowledgable and curious doctor, tell her your symptoms, and have her perform the work you are currently trying to do on your own. Once you actually have a diagnosis, then it can be helpful to do a bit of independent research on various treatments, but I suspect that trying to do this kind of research before you have a diagnosis has the potential to do more harm than good.

If you can, I think the best thing you can do is keep a very detailed and careful record of your symptoms, including what you may have eaten just prior to their onset and other things going on in your life (stressors at home, potential allergens you've been exposed to, other medications or supplements you are taking, etc.). Bring all this data with you to your next doctor's appointment.

Finally, when I was dealing with a mysterious ailment I ended up being referred to a rheumatologist even though it would have never occurred to me to ask to see one. I don't know if it was the particular doctor I saw or if this is true of rheumatologists in general, but he was very knowledgeable and open minded and willing to test for a variety things (some which were highly unusual) to get to the bottom of my symptoms.
posted by girl flaneur at 10:07 PM on June 27, 2014

The magic words to say to doctors in these circumstances are "my symptoms are severe and pervasive, and significantly impact my ability to carry out the activities of daily living." Have examples on hand-- ADLs include sleeping, eating, commuting to work, working, shopping, social activities with friends, etc. These are terms that doctors use when evaluating the severity of illness or injury and if you speak their language it can sometimes cut through minimizing bullshit.
posted by KathrynT at 12:50 AM on June 28, 2014 [4 favorites]

You've gotten some excellent answers here. Hard not to read through your post and notice how many times you said you were scared or worried about various things. Anxiety can be related to many of these symptoms so it's definitely in your interest to work on that side of things while you continue to get the rest of your workup.

KathrynT is also right about those being the words to use, generally, to get your doctor's attention (I'm a doctor, although of course not your doctor).

I just wanted to address your concern about "masking symptoms". Masking symptoms is something that many patients worry about that doctors don't worry about much at all. Why? Because masking symptoms means that your symptoms go away, which is the whole point of treating you. Medications only last a few hours, for the most part, then they wear off. If you want to go back to feeling the way you felt before, you always have the option to stop taking them. If, on the other hand, you find that you feel much better while taking the meds, you might decide you'd like to continue...

I understand your concern that you are treating symptoms and not an underlying cause, but it sounds like you've had all the cardiac workup you're going to have, so your options are either getting another opinion and maybe getting some more or repeat testing done, or trying symptomatic treatment. Some people just get palpitations or frequent PVCs and it's not necessarily because of another underlying problem (at least not one that medical science understands...) - it can be benign aside from how uncomfortable it makes you feel. I've met other people with the same kind of issues you're having with sinus tachycardia, palpitations, PVCs. So, just encouraging you to give the recommended treatments a shot. They're not guaranteed to work, but it seems like not taking medications isn't working well for you either.
posted by treehorn+bunny at 1:57 AM on June 28, 2014

Everyone's getting some excellent answers to other things in, so let me tackle the colonoscopy! I have these every few years and they are no big deal. People get worked up about them but, really, if I had to choose between a pap smear and a colonoscopy I'd take the colonoscopy every time. I recognize other people have other experiences. I heard so many doom and gloom stories before I went in, and afterwards I was like, "Really? Really?" The below is my experience.

Regarding the lovely beverage you are about to drink: mix the solution with the COLDEST water you can find - or if you're getting the stuff in the gallon jugs, stick it in the freezer for a bit to make sure it's cold. Ice cubes are also not a bad idea. Then use a straw to drink up each dose. Place the straw fairly far back in your mouth and drink it quickly. Between the cold and the not-hitting-all-of-your-tongue you should avoid any issues. I am the Queen of Queasy and the stuff has never set off my stomach. Follow it up with a Gatorade or whatever-liquid-your-doctor-recommends shooter.

Prep your bathroom with reading material. You will be in there for a while. If you are in a shared household ensure you have a bathroom reserved for yourself.

I have done the process both as a vegetarian and as a carnivore. I find it goes best if, for the couple of days preceding the procedure, I eat lightly and avoid meat. When I was a meat-eater there was some cramping; as a vegetarian it's more like that thing your intestines do when you drink too much coffee, but for a prolonged period.

Apply Vaseline to your anus after you drink down the first dose of the solution, and then repeatedly afterward. Your butt will thank you!

Regarding your actual health issues: A number of the issues and treatments you are describing remind me of myself circa 2000-2003. (I don't know if you've had doctors tell you it's all in your head, but I sure did!). I did an elimination diet and discovered I had a food sensitivity to something not in the usual soy/gluten/lactose/eggs/nuts schema. I nailed down what food was the issue (the food in question is also frequently used as an additive under a different name) and since I eliminated it my health has changed for the better. This may not be your issue, but if you have not done an elimination diet I highly recommend it. The worst that could happen is that you'd eat a healthy if incredibly boring diet for 4-6 weeks without helping your problem.
posted by rednikki at 10:41 PM on June 28, 2014 [3 favorites]

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