Starve a Fever. Feed a Rheumatoid
November 15, 2007 12:33 PM   Subscribe

So I've got some sort of rheumatoid condition. My mentor has suggested I go to a macrobiotic nutritionist to get them to come up with the right meal plan for me. Maybe even make it. Is there someone who does this in Los Angeles?

So it's pretty clear that I've got some sort of fairly serious rheumatic disorder. Might be Rheumatoid Arthritis. Might be Reactive Arthritis. Might be Ankylosing Spondylitis. Might be Psoriatic Arthritis. Right now they're still running tests.

Symptomwise, I'm consistent with all of them, more or less. I've got eye problems, skin issues on my feet, the occasional sharp or pulsing pains in random (but non-tandem) parts of my body. (At the moment I've got one in my right forearm). Occasionally I'd get a sharp electric jolt to the groin area. If I was into that sort of thing, it might even be fun. But I am not and it isn't.

What's really moved the ball downhill is, since last week, I've got pretty brutal pain in my upper back, neck and both shoulders. It's taking a full vicodin in the morning just to get me up and around.

The tests, while still in the check and re-check stage, are pretty definitive for something. I've got a Rheumatoid factor of near 500, a negative ANA and low Vitamin D among other things. My x-rays, CT Scans and MRI's have been all fine but they were before the back and neck pain of this week. I went back today for more and there's no news as of yet.

Right now my rheumatologist is suggesting, since the low level drugs she tried didn't work, that it's time to start on one of the big three: humira, enbrel or remicade. All of which reduce your ability to fight infection to nearly nada. A clear danger for someone like me who gets horrible colds, like clockwork, twice a year and was covered in injury related scabs through the end of the teen years. Even worse, all three drugs triple your risk of a lot of cancers. So short term, I have to worry about infection, and long term, I have to worry about a tumor.

By the way, if I haven't stated so already, I'm a guy who never really needed a doctor up till now, never took a single illegal drug in my life and have always been able to count on my health. Thus, categorically, this sucks donkey balls.

Continuing.

I'd like to wait and see with this, but, as all the literature suggests, the longer you wait, the more long term damage you might do by not acting early enough. So I need to do something besides wait for the tests. Which brings us to the diet. diet.

Basically, my mentor, who beat cancer, she thinks, through a macrobiotic diet, is telling me I have to give it a try. It's a fine idea, but I haven't actually bought groceries for a year. I just get a big lunch and steal snacks from the office kitchen. I don't even have a home microwave these days.

More important, having looked at all the nutrition guides from the various sites that have to deal with this stuff...well some of them seem downright contradictory. Some say avoid wheat. Some say ONLY eat wheat. Then there are the supplements. From Devils Claw to FeverFew to alot of stuff I can't even type here without sending the spellcheck into a tailspin. Someday I might be able to get my head around it. But that day is not today.

So is there somewhere in LA I can go, pay someone to make me my food and tell me how it's going to help me? Again, I'd like to do this myself down the road. But for now, I think it's best to leave this sort of thing to the pros. Or at least the people who have more than tonic water in the fridge.
posted by rileyray3000 to Health & Fitness (14 answers total) 5 users marked this as a favorite
 
i would get your doctor to refer you to a nutritionist. a macrobiotic diet is fine for a healthy person, but may not be a good fit for you, depending on your lifestyle and nutritional needs.

i think a lot of people try specialized diets when faced with a severe illness because they believe it's one more weapon against this scary thing. good nutrition undoubtedly helps a person get and stay healthy, but i think the greater benefit is psychological--it's something you can control and understand, while drugs are confusing and complicated. there's nothing wrong with that--it's no weirder or stupider than turning to prayer or yoga--but make sure a doctor knows what you're up to.

i'm not a doctor or a nutritionist. i've just had friends and family members who've had cancer and other nasty things, and have seen them try all sorts of wacky stuff.

good luck, and hang in there. you'll figure it out.
posted by thinkingwoman at 1:17 PM on November 15, 2007


I agree, speak to your doctor about this idea. Nutrition is a great idea, and it might help you, but make sure it won't make anything you're already going through even worse. Your doctor can explore what options might be helpful and can refer you to someone who will complement the other avenues you're exploring.

And good luck.
posted by bassjump at 1:21 PM on November 15, 2007


Read this and the macrobiotics section here before you go spending money on it.

However, it does sound like you diet could do with some improvement. You should talk to your doctor about find a nutritionist who can probably hook you up with someone who prepares meals.
posted by 517 at 4:34 PM on November 15, 2007


If you want to undertake a diet experiment, try the paleolithic diet for a month and see how it makes you feel. If this seems too extreme, at least try excluding wheat for a month. I suspect either of these will do you far more good than the nutrient-scanty approach of macrobiotics.
posted by zadcat at 4:51 PM on November 15, 2007


Have your doctor refer you to a Registered Dietician. They should be able to work with you on what's best.
posted by 6:1 at 5:43 PM on November 15, 2007


What sort of doctor diagnosed you and what the heck is a "mentor" (I know the term and have them my fields) doing playing doctor for you? Also, how in the heck do you get Vicodin for recent, as in "just in the past week," pains?

I am not a doctor. Eat foods that you like and know are better and convenient for you (no drastic changes) and ask your doctor's office to schedule an appointment with a dietitian if you are still compelled to alter your diet before a definitive diagnosis.

In the meantime, honestly document what you eat and be prepared to show your dietary logs to doctors.

[Sorry to sound harsh--I'm waiting for an appointment with a gut doctor to diagnose intestinal issues. Until then, my GP has tried valiantly to alleviate my symptoms. Ultrasound and CT tests yielded things what need treatment aside from my pains, fatigue, and rapid weight loss.]
posted by bonobo at 10:15 PM on November 15, 2007


1) My Rheumatologist is in the process of diagnosing me.

2) My mentor is someone who's been close to me my whole life and a source of good medical advice in the past. She urged me to seek out a macrobiotic nutritionist and see what they say. Nothing more.

3) I had the vicodin from a previous surgery left over. When the asprin did nothing I started with a third of a tab, then a half tab then, as of this morning and pain that just wouldn't abate, a full one. This in addition to the previously prescribed sulfadazine tablets.


As far as keeping a dietary log, that seems like a good idea. Nothing that will help until I get one that gives me some advice nutritionally, but a good step nonetheless
posted by rileyray3000 at 11:17 PM on November 15, 2007


SULFADAIZINE??? I know anti-biotics are a first step, but....straight to enbrel? Either I am seriously out of the loop (see below) or you need a new doc. I really hope I am wrong. And wish I knew how to link.

So sorry to hear that you are suffering. I have had rheumatoid arthritis for eleven years. IANAD/IANYD. (Nor am I a writer, so forgive!)

I have, however, had 3 rheumatologists, many (great) acupuncturists, a dietitian, an allergist, a chiropractor, a couple of quacks, some crazy cult offerings, taken "brews" of things I swear included tiger balls and snake venom, tried the GIN 'n' RAISINS "therapy"...and as far as "doctor" meds go: hydroxychloroquine, prednisone, methotrexate, enbrel....has it been mentioned to you that depression can occasionally (read:often) be a 20/20 hindsight type sign? In the beginning, they also gave me paxil, prozac, and zoloft. So, anyhow, research DMARD's (disease modifying anti-rheumatic drug). That's where they should start you. Surely NOT with vicodin.

While it's good to hear it's a stash, don't rely on it. You'd actually do better with an anti-inflammitory is my bet. While you are self-medicating, a personal option(later favored by a doc) was 800mg ibuprofen every 4 hours. With a prevacid to keep your stomach from turning to shreds.

Through this whole process, please take a stomach acid reducer (not pepto-really hard on the tummy long term!) everyday. Wish I had. Thought I was tough for YEARS. Then one day...instead of an ulcer, or a pain or something...it was like a stomach wide ulcer....the whole caboodle. And I had been so well! There will be so much to consider, now. Most of it boring, lots of it sad. Sit tight.

It is really hard to make peace with chronic illness. I was 20 and though everything turned upside-down over the relative few months as the disease took hold, it really felt like it happened overnight and my life was over. This will absolutely change you forever. But it sure as heck won't end it, and people with chronic diseases, in my experience, are some of the most thoughtful, patient, fastidious, careful and happy people I have met. I don't know why, maybe it's realizing how painfully human we are that does it. Maybe it's just a new take on the world. See me wandering, already? Oh, and most of us are well beyond "functioning."

I'm a waiter, I sail, I fly fish, I walk the streets of brooklyn better dressed than when metafilter found me, I take pictures, I drive, I have great sex when I can, and I really really love my life.

Just a short list of what I cannot do, that I never would have anyway, followed by some things i wish I could do:

CAN't/don'T caRe:

1. Ski. yuck. cold.
2. Run. ouchy bad.
3. get wasted. swell, flare.
4. read trashy novel/watch bad tv. cranky, hateful.

CAN't/ care:

1. win at arm wrestling. so mad about it.
2. open that jar for you. control-freak/helper-fiend
3. give piggy-back rides to kids. do anyway. sucks later.

So, first off, and the most important thing I have to say is this: No one here can help you figure out how you are going to live with this. Physically, or emotionally. Bonobo above was a little harsh, but I can't help wondering some of the same things.

If you do in fact have a Chronic Degenerative Joint Disease (and let's hope that you don't. You could have chemical poisoning. are you a house-painter? doing any refinishing? are you a photographer in a color darkroom? do you live in an old house with mold? have you suddenly become allergic to corn? or wheat, as mentioned above? do you have ...it goes on and on...) then it could take awhile to figure out which one. I sure hope it doesn't, but don't let them drug you right away-from what I understand, and I'd love someone to tell me I'm wrong, it's much harder to tell what's going wrong if you are on an immuno-suppressant or a steroid. Which sucks, to be sure.

As far as a nutritionist? What you want is a dietitian. Anyone can call themselves a nutritionist. You want creds, and you want good ones. I'm not saying you need a dietitian. I'm just saying you do NOT need a nutritionist. If you want a dietitian, fine. But, no matter how crappy you feel, this is when I mention that when it comes to ANYONE you really have to start kicking ass and taking names. ( And I mean for anyone you see. No matter how many or few degrees...references, how they know about rheumatology or auto-immune disorders in general. Be thorough, do your own research first and always get their name. And write it down. You never know.) Then start researching them. Google-Fu their name+rheumatic disorder, you get the idea. It's L.A., take no chances. Because really, there are most certainly things you can do to try to avoid flare-ups, reduce your suffering and medication...basically help you figure out what makes you feel better or worse. Smoking is the root of all evil for any related disorder, alcohol and caffeine are right behind them.

SUXOR DREERI SOBR OH HAI! I SO FUN. OW!!!

I think an allergist might be a better first approach. Just one more thing to check off the list. Seriously. Allergies happen at all ages, from the strangest things, and in my opinion really worthwhile to start here. BUT...find a reputable specialist.

However, if you do have a CDJD, unfortunately it's generally different for everyone. It's one of the most annoying things about a CDJD. It also explains why there are dozens of different medications for Rheumatoid Arthritis alone.

You don't say how long you have been sick, or what the low-level drugs are but a 500 RA factor...well? You can test into the thousands, 150 can totally fuck you up, someone else at 300 might be mildly sick. Another annoying factor. I couldn't get myself out of a chair, up a step, make anything resembling a fist or bend my arms much and at the time my RA factor was 50. I also smoke and drank and ate lots of corn and was allergic to really weird things.

My acupuncturist (the only kind of doc my family had seen growing up) was of the TCM variety and as bad-ass as she was, she threw up her hands and told me to stop coming. She really believed she was making me worse. My Japanese acupuncturist on the other hand (different technique, pretty cool) helped me some. I really hope an actual doctor chimes in because i'm currently black-market medicating because I love Canada so much.

Also, a dietician is what you want, not a nutritionist. The latter (no offense to you) don't necessarily know diddly. "Nutritionist" requires no more degree than I have. I'm a FOH restaurant mystery. Not that I'd support going to a dietitian, either. Guess what? Don't smoke, don't drink alcohol (of any kind,) don't eat beef or fish or eggs or wheat or corn or nuts or anything in the cruciferous family. They will tell you this, you will feel good about knowing you are in control and will make things better...and then you won't feel better. And blame yourself. And it won't be yer fault. But it won't matter.

As far as the meds go, well, clearly prednisone and methotrexate sucked the most. Hair fell out, i gained so much weight. The colds. The endless colds. Oh, and athletes foot, warts on my friggin face, yeast infections on limbs...yup. It all sucked really really hard. But you know what? Your body will adjust, it will take time, and that zinc doo-dad (zicam, brand name) in your nose it the real deal.

And get your flu shot, the roto shot, the pneumonia shot, make sure you are up on your others...and you will be okay.

Be careful, tread lightly, ask questions, and feel free to email me, clearly I could go on forever.

Oh, and go ahead and be scared. It's hard. You WILL figure out how to live with whatever it is, though. "what does not kill us" and all that.

Email is in my profile.
posted by metasav at 12:18 AM on November 16, 2007


I can't speak to your condition or dietary treatments, but I have psoriasis and I take a drug with a similar mechanism to Enbrel (Raptiva). I'm also maybe a little bit on the sickly side. I was worried about the immune suppressant making me a year-round vegetable, but it's been nigh on a year now that I've been on the drug and I just had my first cold. It was a doozy, but not out of line with the friends who've also had one recently.

I guess overall my point is that it treats my disease -- it works. I'm more conscious of the possibility of picking up viruses and such, but thus far I've been alright, and the risk is to me completely worth it if it means I'm not plagued by psoriasis. If it's decided you need to go on Enbrel, and it treats your pain effectively, it just won't be as scary anymore. Good luck.
posted by loiseau at 12:35 AM on November 16, 2007


To add some more here:

Symptoms: I'll list of the ones that are the reasons why I HAD to go in, but, in retrospect, most of the symptoms had been there for years in much milder ways. I just never put two and two together.

1) Eyes. Red. Dry. Painful. Occasionally very itchy. Eyelids Droop in the light sometimes. Numbness, tinging, pressure other times. Periods of constant tearing. Periods with a spreading numbness that goes back from the left eye socket. Often a general tiredness in both eyes. A strong blunt pain in the right temple and which extends down through the cheek, numbly, to the lips as the temple pulses a few times.

2) Very tired at night. Fatigue sets in all at once at night. Fine right up until it does. Then I fall asleep wherever I am. Road trips become tricky affairs. Follows period months earlier where, in the afternoon, it takes several cups of tea just to get me through 3-4PM period

3) Pain in the top of my back, bottom of my neck and both of my shoulders that is impossible to sleep with. And, soon, tough to get through the day with unless I take a vicodin

4) Occasional shooting pains in the groin. Clear from all STD tests. Pain continues anyway.

5) Scaly patches on my feet.

6) Sore in my mouth that lasts 9 days.

7) Recently significant non complimentary pain and numbness around my body. Right forearm. Left shin. Right thumb. It doesn't seem to be joint so much as parts between two joints

8) A pinky on my right hand that recently started pointing away from my hand.

And again, some of those I've had on again off again for years. The eye thing happened in college for two days (it's 17 years later now) and the doc said it would go away and these things happened sometimes. It did and I believed him.

I've had occasional periods when my back hurt for no reason. I went in for the x-ray and every thing came back clear. And my GP told me to take it easy at the gym.

It was only when the eyes went weird for an extended period and just wouldn't seem to get better that I had to check into the hospital one night. And one doc on duty thought I had reiter's and told me I should get checked. I got a Rheumatoid Factor test done and this has started me on the road I'm on today. Now I did come back negative for the HLA-B27 gene that's a marker for most reactive arthritis but that's not a get out jail free card.

Also I got diagnosed with LRD and have been taking Nexium for almost a year now. That started before most of the other symptoms. And in many things I read, I see that stomach or acid problems are often pre-cursors to all the rest of the stuff.

They're still in the process of making sure the high RF might not be anything else that causes such results. Like Sarcidosis. And TB. And mono. But for the most part that's all coming back negative too.

As far as treatment, according to my rheumatologist, the current thinking in medicine is, if you can take the them, the sooner you start one of the anti-TNF drugs, the better it is for you long term. That, in some cases, if started early enough, it can even send the disease into an indefinite period of total remission.

Granted, that seems great. Were it not for the fact that the anti-TNF drugs play hell with your immune system and I cut and scratch myself often through clumsiness. And that I get colds that are pretty bad twice a year. And that I wake up every morning with phlegm at the back of my throat that's pretty significant. And often green. Even if I take a nexum before bed. Which scares the hell out of me in and of itself.

But then, given the idea of putting my immune system in check...well moreso.

So that's where I'm at. Any other advice you might have in this area is appreciated.
posted by rileyray3000 at 7:03 AM on November 16, 2007


I have mixed connective tissue disorder, a related condition
(aka we know there's something wrong and we have no idea what). I am not a doctor, but I have done a fair amount of research because I have arthritis, including sometimes crippling arthritis in my neck.

First things first, ask your rheumatologist about a Vitamin D supplement. Vitamin D helps regulate the immune system and if you're deficient, your doc should have already prescribed you an OTC supplement. That's why they test for it! Why haven't they done this? You might take some on your own, at the recommended dosages.

Are you on steroids (ie Prednisone?) They can do wonders for pain and inflammation, pretty much immediately, and they can slow joint damage significantly. The side effects are not to be sneezed at, it can throw your immune system for a loop, but it'll definitely help you feel better ASAP.

For a longer term strategy, you might want to talk to your doctor about Plaquenil if Embrel and its ilk frighten you (as well they should--cancer? WTF?!). It's an anti-malarial drug that can help a lot the fatigue and joint pain associated with RA.

I would also get a second opinion, especially if you're not comfortable with the treatment plan your doctor is advocating. In my very humble opinion, there are a lot of different ways you could treat this and you should be comfortable with your treatment plan.

I, too fall asleep at random times and places. It's a strange kind of fatigue, isn't it?
posted by sondrialiac at 10:18 AM on November 16, 2007


I have chronic hip pain due to Ankylosing Spondylitis. The no-starch diet described here has been a total life-changer for me -- I went from being on daily prescription NSAIDS (Voltaren) and still not being able to sleep well at night to only needing an occasional Advil (maybe twice a month) before bed. The diet does not seem to help all AS patients, but it does work for many, and it's not too tough, so you might try it and see how it goes.

Note that your doctor might be skeptical. My rheumatologist told me she'd believe in the diet when they did a double-blind clinical test on it. I replied that I'd be happy to set one up, just as soon as she found me a few hundred AS patients who've never seen a potato before.
posted by vorfeed at 1:55 PM on November 16, 2007


The best thing you can do for yourself dietwise is to avoid inflammatory fats. You can try all sorts of "special" diet programs, but really just avoid anything you're allergic to (if anything), and eat healthy. Lots of fruits and veggies with antioxidants, fewer inflammatory fats. Hit pubmed and look at the studies on arthritis and inflammatory fats. Scary stuff.

Try to avoid, or find ways to handle stress if that's classically a problem for you.

I've been taking Enbrel for a couple of years now and I'll take the risk of cancer over having my joints eaten by my body in seriously slow and painful ways that diminish my ability to function. As for infection, the first year I was on Enbrel I wasn't terribly careful, and got a couple of colds/flus that year. The next year I got smart: I got the flu shot, and I washed my hands every time I walked back into my house. I kept my hands away from my face, and if someone with a cold sat down next to me I got up and walked away.

And from then on I've done great. I get fewer cold/flu things now than I did before I went on Enbrel, and Enbrel makes me feel great! I'll never stop taking it as long as it works for me. I think you can handle a lot of the infection problems by learning to be mindful. You can also lower your cancer risk by eating more antioxidants, maybe enough to offset the increased risk that the drugs bring.

Don't waste time and money on macrobiotics, spend your time instead on things that are proven by studies to have an effect. (However, macrobiotics won't hurt you. If you really dig the idea and it makes you happy, do it. Just don't expect a cure.) If you don't have time to cook healthy meals, then pony up a little money for a service that will make and deliver them. LA should have plenty of these. Here in Seattle we have http://www.dancingwomen.com/ and multiple others.

If you're set on macrobiotics, google "nutritionist" and macrobiotics in your city. I'm sure you'll find a ton of people who do this and/or offer a macrobiotic meal service. In fact, try googling "macrobiotic meal service" and LA and see what you hit.

Good luck. I know it feels like the world's ending when you're first diagnosed with something like this.
posted by tejolote at 3:27 PM on November 16, 2007


Good thoughts all around. Thanks. I do feel a little like my world is ending. The worst part is, till I get a specific diagnosis, I don't even know what support group I should go to.

One thing though: how can you get a flu shot when you're on Enbrel? I thought exposure to a live virus is a bad thing when you're on any of the anti-TNF drugs.
posted by rileyray3000 at 5:34 PM on November 16, 2007


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