I need (short-term) ways to survive what is becoming a major health crisis.

July 24, 2011 4:15 PM

Health-Implosion-Filter: Need short-term ways to survive barrage of ailments+something undiagnosable - if I can. Way freaking more inside.

MeFiters: I am the guy who posted here almost 2 years ago. Since then, I have been slowly worsening, and a sinus surgery I stupidly had last year before researching it better didn't help either. That probably put the sprinkles on top of the icing on the crap-health-cake. At this point I almost certainly need some kind of anti-depressant med intervention since I can't get anything non-med to work; I just saw a great new psych doc who is having me do an rEEG this week, which looks like it might be helpful instead of just randomly throwing anti-depressants at me. In the meantime, the problems I have are:

- Hashimotos (under control with great endocrionologist)
- celiac (I maintain absolutely strict gluten / yeast / & dairy free diet) plus
- IBS (was controlled, but getting worse and worse due to
- rem sleep disturbance (had 3? sleep studies.. only the first one was really useful since I barely slept at all in the 2nd two from the wires and what not. The successful study indicated minor rem sleep disturbance, but not a consensus between the 3 different sleep docs on whether I actually have 'genuine' sleep apnea or not, or whether the disturbance could be caused by worsening depression. Attempted multiple cpap/bipap machines and masks to no useful avail.. 'not useful' meaning, I could not successfully sleep with them on for any useful length of time per night before having to take them off).
- terrible allergies, which I have tried every damn thing under the sun for including various elimination diets (LEAP, grain-free), have an airfree mold destroyer and a hepa filter going all the time. Currently at a higher-than-usual dose of allergy extract in my allergy shots per my allergist, who does that for cases like mine that seem unresponsive to the usual doses. That's why I had the nasal surgery, in the hopes it would help. Unfortunately the ENT did not tell me (and I had not read Chris Martin's book about the potential badnesses of any turbinate reduction and possible 'empty nose syndrome') that having this surgery could possibly make my allergy symptoms WORSE, so now per one of the experts on such things that I spoke to, he believes that I've likely got beginning symptoms of ENS as well. I've tried just about everything legal and smart that a person could use for nasal rinsing or emollient-ing, so that's becoming a bust. Breathing normally on any given day is a crap shoot. Some people commit suicide from nose problems like this alone if you read stuff by people on the 'Post Turbinectomy Nasal Dysfunction Community' board, although I'm not there yet.

Add to all this
- 'functional dyspepsia', which in my case is 24/7 bloated stomach. This is the thing that I think kicked off the worsening sleep and depression to begin with. I've been to the Mayo Clinic, seen tons of gi docs and had 98% of the tests known to western medicine for gi. Taken at least 5 different PPI's and a giant list of naturopathic supplements. Also done acupuncture, biofeedback, and when I could still do it, yoga and tai chi, to no effect. The stomach thing started after I had the flu. When flu was gone, I had this great new stomach thing, which has not gone away at all to any degree that I can tell, over the last nearly 3 years. It is constant - different foods do not seem to affect my upper g.i. that I can tell. Unless there's something poisoning me in my apartment, which I can't find any sign of and I tested the water, or my bed is funky which I don't think it is either, I suspect it's a combo now of pure depression and poor sleep that's killing me, plus the mystery stomach thing.

I am hoping that some combo of neurologic meds and/or steroids will probably be the biggest help.


Some of you may be wondering how the hell I'm even typing this up here. My answer is I have no idea. I appear to be genetically gifted into looking way better than I feel, but trust me, on the inside, I'm terrible, and at nearly 40 I figure that little gift is not going to keep on keeping-on. I have lost about 10 lbs, and not in a good way for a skinny guy. I feel like crying at least once about every other day. Most of the docs I've seen seem to agree at this point that I am not a hypochondriac.. believe me I am NOT looking for anything else to be wrong with me, this mess is plenty. I would have already sent my case to the NIH's Rare Diseases dept for the hell of it, but they've suspended taking them due to severe backlog as of July 1 2011.

I have managed to hold onto my job because the nature of it lets me sit at a desk a lot, which is not particularly good for you, but it's paying my medical bills and about all I can do. I am finally tired of it as jobs go due to boredom, but the people there are nice and the stress is very low. Naturally I would like to do something new as I've been there 10 years now (I've only stayed the last 3 to pay bills), but I am extremely wary of rocking the job boat at all if I can until I get myself feeling at least several notches better.

I have a few close friends in my city who are concerned about me, but really only one who has been spending a lot of quality time with me trying to prevent me from going completely batshit nuts as a result of all this. She's supposed to be around for at least another six months, but after that I feel the people support I would need to keep slogging through this here at my current rate of decline would be gone.

My parents live in the suburbs of a much larger city where it is cold most of the year (bad for dry nose, but probably better for allergy), and if all else fails they would take care of me, but their attitude is not nearly as great as my sunny super-empathetic local friend. If I move back there, it would be really difficult for any friends I have left in that city to come visit me with any regularity due to my parents' location. It's bad enough already, I feel, that I am living alone in my apartment, but I can still make myself go out sometimes to see people outside of work.

I have been going to therapy for a while now but it's not doing much. My therapist has trained in hospitals with the chronically ill, but I don't think she's had a person in her practice who has been so thoroughly pro-active despite feeling like hell, in terms of things you can typically do for depression. I've read bunches of self-help books as well and am about to try meditation, but it's pretty tough when your breathing is all over the place. She agrees that I need more medical assistance at this point. (I have seen several other therapists looking for a good one prior to her, but they were actually way less useful, so I'm going to stick with her a while longer).

So:

1. is there a responsive online forum specifically for people with undiagnosed chronic ailments that's in any kind of order? I can't find it if it exists... seems like there's various forums scattered about but nothing really cohesive.

2. I wish there was a service like Tinychat geared towards people who really could use more buddies in time of need. That way if I'm hanging around at home, I could just crank up a webcam and always feel like people are around.

3. I welcome anyone's suggestions. I am totally willing to correspond with anyone as well here: [e-mail]

Thank you so, so much mefiters.

posted by anonymous to Health & Fitness (8 answers total)

How long were you grain-free? And now are you eating any of the replacement gluten free foods? Those can cause bloating. It could be that they're contaminated at lower than 20ppm gluten but you are sensitive enough to react.

So many of your symptoms sound like that of a super-sensitive celiac. Good luck and feel free to memail me anytime.
posted by sugarfish at 4:40 PM on July 24, 2011

I don't have answers for you, but I empathise with you. Very few people understand how awful it can be mentally, emotionally and physically to go undiagnosed for so long.

Keep fighting. Stay strong on the real diagnoses you have (sounds like celiac is the most certain) and do what you can to manage those. Be kind to yourself in any way you can - rest, massage, etc.

Good luck. Wish I could hep more.
posted by guster4lovers at 6:03 PM on July 24, 2011

This website, Patients Like Me, seems like it might be a good resource for you. I haven't used it myself, but bookmarked it after watching a TED lecture about it.
posted by annsunny at 7:16 PM on July 24, 2011

Could you look into chronic low-grade Diverticulitis, and also Small Intestinal Bacterial Overgrowth? My partner is also a very sensitive celiac/lactose intolerant following strict diet, and had similar symptoms. Antibiotics and loads of probiotics are helping a lot. She has gained a few pounds and has less bloating/pain.
posted by antiquated at 8:25 PM on July 24, 2011

I'm not sure what parts of this might be helpful to you so just cherry pick what you want.

My ex had severe stomach problems after a nasty flu. He got nowhere seeing a regular doctor and finally saw a specialist (Internist maybe?). The doctor told him that when he had the flu, it might have damaged his intestinal lining and to take Prilosec for a couple weeks to give it a chance to heal. The specialist said he could do tests but since my ex didn't have insurance, this was the most likely and simple to treat. It took a while but it did seem to do the trick. I'd say he was about half better after the end of the 2 weeks and mostly back to normal after 6 months or so.

On the allergy front, you have my sincere sympathy. It can totally destroy your quality of life. The biggest 3 things that helped me were allergy shots (which you're doing), Quercetin, and to use regular soap instead of antibacterial soap when washing my hands.

The Quercetin is a supplement you can buy at health food stores or Amazon. It's worked better than most of the prescription stuff for me. Here's more info, if you want to read up on it.

http://www.umm.edu/altmed/articles/quercetin-000322.htm

The washing with regular soap instead of antibacterial soap is something I saw on TV. The main idea of it is your immune system is out of whack when you have allergies and starts attacking normally harmless things and sometimes itself. When you use anti-bacterial soap, you're killing off all the microbial life which lives on your skin. Your immune system doesn't have it's normal enemies to fight and start fighting mold, dust, etc. I'm paraphrasing and might be mangling this explanation but so far, limiting antibacterial soap has cut back on my allergies. Here's a few articles talking about allergies and antibacterial soap.

http://www.emaxhealth.com/1275/antibacterial-soaps-make-kids-too-clean-cause-allergies

http://health.howstuffworks.com/skin-care/cleansing/myths/antibacterial-soap-outlawed2.htm
posted by stray thoughts at 11:00 PM on July 24, 2011 [1 favorite]

Have you tried taking probiotics? Many celiacs do, and it helps IBS-types as well. I'd recommend acidophilus pearls or Digestive Advantage for IBS. Also, if the PPIs are not helping you, I think they could be making the problem worse- acidic environments discourage bacterial overgrowth, less acidic can worsen it instead. Lastly, taking mastic gum, if you aren't already, can help somewhat with the dyspepsia and bloating.

For IBS- you might want to look into the FODMAP diet (list of foods to avoid/eat) As a fellow IBS-sufferer, I'd heard all the typical foods to avoid- fried foods, caffeine, etc. and avoided them all, to no effect, but following this diet has actually helped to reduce dyspepsia and bloating. After a few weeks on it, my digestive system finally has been steadily getting better. Also smaller portions of a variety of things seems to work better than normal meals. Hopefully it might help you as well.

Good luck!
posted by tachikoma_robot at 11:17 PM on July 24, 2011

The FODMAP thing is something that can be definitively tested for, and helps a lot of IBS sufferers. I'm pretty sure it's a breath test, so nothing invasive, but it needs to be done properly by a gastroenterologist trained in this area (it's still pretty new but the clinical evidence appearing is strong). It would be worth your following up if you never have before, because it sounds like getting on top of the gastro symptoms would go a decent way towards making your life better.

I also kind of wonder if you tried the PPIs without the naturopath supplements? I found pretty much everything given to me by a naturopath very harsh on my gut and made it feel worse, regardless of what they thought it would do (this was when I was in high school and doing what my parents told me). None of it has any science behind it, it's not worth wasting your time on and could well be making things worse. Probiotics can help some people in certain situations and you could be one of those situations, so that is worth following up on. The research is showing they don't need to be live cultures and do need to be taken regularly (they don't 'recolonise' or whatever, just do their thing then continue on through). I eat a lot of yoghurt because I like it anyway, and it seems to calm my tummy.

Personally I also find that PPIs don't really help that much and make the bloating and other symptoms way way worse (I have reflux and IBS). So instead I hake H2ras for my reflux and they work much better for me. Which they kind of shouldn't because they're less active at cutting acid and wear off faster, but they don't have the side effects so overall my whole gut works better when I take them. That's another thing to try if you want to keep down that path, PPIs can be kind of horrible for some people (interrupted sleep is one of their less common side effects too).
posted by shelleycat at 12:41 AM on July 25, 2011

A friend of mine in the medical field suggested this web site: http://www.neurosymptoms.org/

Although this web site is not intended as a diagnostic guide, it has some information about functional disorders which may be helpful.
posted by Charmian at 8:01 PM on July 25, 2011