Am I in denial? Or is my doubt justified?

[Wisescarab]

Hello all,

I think I should give a little background. I am now 32. I started to have mild joint pain in my fingers and my toes off and on when I turned 25, coupled with lethargy that makes me feel a 100 years old. I didn’t really think too much about it, as at the time I was on the computer often (work/computer games) and I hiked quite a bit. I just thought it was natural wear and tear. Then one day when I was 28 I woke up in tears, the joints in my hands were in so much pain that I wanted to cut my hands off. I was literally writhing on my bed in pain for about 5 hours (shaking my hands crazily), and then it went down to a normal dull ache. Well that encouraged me to see the doctor, and she diagnosed me as having Rheumatoid Arthritis, and prescribed me Celebrex. Well, being my usual self I didn’t take any medication, because it was too expensive, I hate pills and wasn’t keen on the side effects, and I figured I could just endure for awhile. After all I had so far.

Everything was relatively normal until right about when I turned 29, when it happened again. Unfortunately my first doctor had retired, so I went to a nurse practitioner to “man up” and get on the prescription I had been neglecting. She diagnosed me with Anemia, which dumbfounded me. Yes, I suppose that would answer the lethargy, but I didn’t think anemia would cause pain. This time I decided to get a second opinion from a full doctor. She ran several tests, (lupus as it runs in my family, and a few others) and found that I didn’t have RA, but that my Ulric Acid level was quite high, at 7.4. So she diagnosed me as having Gouty Arthritis ( if I recall a follow up 6 months later tested me at a high 6ish on the UA level).

I am 32 now, and I have only had one major extreme pain episode in the last three years since changing my diet…Of which I am quite unaccustomed too, because I used to be a heavy meat eater (3 times a day, though I am in great shape, and such) and I also love a good beer once in awhile. I only have meat once a week, or once every other day now If I fall off the wagon, so to say. Yet still a part of me is wary, since I have been miss-diagnosed twice in the past, how can I be sure they are right this time? My reasons why I am concerned are the following:

1. When I had a lot of pain, it was in my knuckles. They got really red, and swollen, but it was on both of my hands. I hear Gout only usually affects one joint, ect.

2. I never really get excruciating pain in my big toe. Most of the time, I just get really sore in the middle of one of my feet, and It is just annoying to walk on. Kind of like having a foot locked up, peg leggish style. Sometimes the big toe does by itself throb and hurt, but never to the severe detail people here proclaim (meaning I can usually walk on it, but with a limp).

3. Most of the time I just get dull aches, in the middle of the night, that make it hard for me to go to sleep. These happen like once or twice a month, and last usually for about 4 – 72 hours, depending. Though I suppose if my doctor is correct about this being Gout, then my still occasional beer drinking, and meat eating probably is the culprit…

Now my doctor hasn’t done the joint test, as she feels there really isn’t any need, and points to the positive reaction changing my diet has had. And I do have to admit, thinking back to those times I was with my fiance in Switzerland, and the months after when I monitored things well and kept an extremely strict diet, there were little to no even mild attacks.

But still it kind of makes me wonder, without the joint test. I will be moving to Switzerland soon, and the thought has crossed my mind on getting one last second opinion. But that is why I am here, as sometimes the best advice for a condition, is to talk to those who deal with it on a daily basis. So in this, am I just in denial? Should I just accept this last diagnosis (and subsequently forgot about eating the foods I like, ect, though I needed to cut down anyways) and not bother with the expensive prospect of getting a doctor in Switzerland before I have health insurance. Or should I get a second opinion?

Edit: I suppose I should add, drinking beer always causes me problems, sometimes the same day.

[Keith Taylor]

I know you cannot help associating food and beer with gout, as that is all that medics talk about when they do not understand gout. It can be a factor, but gout is almost always secondary to genetic faults in uric acid metabolism, or problems from side-effects of meds for other health problems, or exposure to too much iron, lead or other toxins.

Restrict your worrying about diet to what is healthy. General rules about healthy nutrition warn about too much meat, and too much alcohol. These are fair warnings, but you have to avoid getting hung up on specific items in your diet. If your diet is bad by normal nutritional standards, then improve it, but do not expect that to have much effect on your gout. The effect is too small to worry about, especially when you do not have a confirmed diagnosis.

You cannot diagnose gout by comparing your experience of pain with other gout sufferers. It is different for everyone. I have even seen one case where gout was not suspected until the patient exhibited uric acid crystals in the eyeball ! Ignore anyone who claims they can diagnose gout from pain symptoms.

If there is doubt about the diagnosis, there is one best solution, and one fairly good alternative.

The best solution is to have joint fluid analysed by an experienced rheumatologist who has direct access to polarizing microscopy equipment. Experienced rheumatologists have the best track record for testing joint fluid, and you need to avoid any delay between drawing the fluid and examining it. Make sure it will be tested as soon as it is drawn – crystals soon degrade outside the body, and you risk a false negative.

The fairly good alternative is to assume that your condition is gout, and follow a properly managed uric acid reduction program. This involves a 24 hour urine test to assess uric acid excretion, appropriate uric acid lowering meds to bring uric acid below 5, with regular monitoring of uric acid. Can you maintain low levels, and see that the painful flares get less frequent, and less intense, until they stop completely after several months? If so, then you do have gout, but it is controlled, which is as good as it gets. If not, you’ve only wasted a few months, but at least you will know it is not gout, and can work with a rheumatologist to find what it really is.

In denial? No, or you would not be asking such good questions. You are too new here, Wisescarab, for me to joke about my Egyptian friend who was happily in denial for years. Maybe later.

[Wisescarab]

Thanks for all of the advice. Hmm, I think I would like to eventually get the joint test therein.

Perhaps it would be prudent to maintain a strict diet (I also have pre-hypertension that I am monitoring anyways), until 3 months or so when I can get on health insurance in Switzerland, then perhaps start treatment. Because my Ulric Acid level started off at 7.4 after an attack. I can assume that it would be a good thing to lower my UA level anyways because of other risks I suppose.

Thanks again! That gives me a good oversight and plan for what I need to do.

[Keith Taylor]

Wisescarab said

Perhaps it would be prudent to maintain a strict diet

OK, percentage-wise, that should get you to the theoretically safe level around 6.5 – I say theoretically safe because 5 is the safest level giving a good safety margin. 6.5 should be safe if you keep reasonably warm, so pack those extra socks.

In your situation, I would focus on keeping calories down, and reducing meat in favor of dairy proteins. Green tea, coffee, 500mg vitamin C, and onions are associated with lower uric acid. That does not mean you should stick to these alone! Just sensible eating avoiding excesses of calories, iron, and animal purines There are few foods to avoid completely, but daily gout diets that lead to excess calories, excess iron, or excess animal purines are definitely foods to avoid with gout. Donate blood as frequently as possible within health medical guidance, and you should be able to stay safe.

[Wisescarab]

In your situation, I would focus on keeping calories down, and reducing meat in favor of dairy proteins. Green tea, coffee, 500mg vitamin C, and onions are associated with lower uric acid. That does not mean you should stick to these alone! Just sensible eating avoiding excesses of calories, iron, and animal purines (search for ‘Purine Rich Foods ? Much Easier If You Ignore Pointless Purines’ to avoid wasting time on less up-to-date purine tables). Donate blood as frequently as possible within health medical guidance, and you should be able to stay safe.>>

Thanks for the advice! The good news is where I am moving, meat is very expensive. So it will mostly be a diet of dairy products, and…Well since my fiance loves everything about Onions, a lot of that. Also potatoes, oddly.

I am going to miss the shellfish though…

Donating blood helps? I suppose it clears out Ulric crystals or otherwise?

[Keith Taylor]

Wisescarab said

Donating blood helps? I suppose it clears out Ulric crystals or otherwise?

It removes dissolved uric acid in your blood, then when you drink fluids to replace the donated blood, you are lowering the concentration. For more information see http://www.goutpal.com/2525/alternative-treatment-for-gout-blood-letting/

That experiment is fairly extreme, but even normal blood donation will have some effect – whether it is sufficient, depends on your numbers.

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