Do I really have gout? Not sure I believe the Doctor

[Unknown]

Hi,

Hope people might be offer some advice as I’m really not sure what I should be doing.

I’m currently sitting here with a stiff and swollen big toe/foot that I agree, when you look at it, looks like classic gout. This is probably the third or fourth time it has hurt like this in the last four years (though the first time for at least two years), and each time it follows the same pattern.

1. I play hockey (field not ice) and either put too much pressure on the ball joint of my left foot by twisting and turning too much during the course of the match, or there is one moment when I can feel something actually go ‘sproing’.

2. The big toe is usually a bit stiff after the game, particulary when I raise it up but not too painful. I can walk on it OK and it either gets gradually better over the next two to three days or at least stays the same.

3. On day three, my toe quickly starts to get more painful, the ball joint goes red and starts to swell and when I press on the side of the joint it hurts a lot (but is ok when I press anywhere else on the foot or the joint). It gradually gets worse over night and by morning I struggle to be able to put shoes or even socks on without wincing. It seems to reach peak pain the following night.

4. This carries on for at least the next few days. More painful early in the morning, especially as I get up, even though it looks less swollen, is better after I have been up on it for 30 minutes or so, and then gradually gets more swollen throughout the day.

5. After a couple of weeks, it is usually back to normal, though the toe feels stiff and if I go back to doing excercise too soon I know there is a good chance it will recur.

I saw the doctor first time it happened in 2010, they took a blood test and told me my uric acid level was not high. I am due to take a second blood test on Friday. Both doctors I have seen think it is gout (despite the low uric acid test) but this is based on a two 30 second examinations and not much else. It’s the easiest diagnosis for them to make and get’s me out of their surgery nice and quickly (even if it is actually gout, I’ve received no advice on what I should do other than take some ibuprofen or diclofenac and wait for it to go better).

Despite the symptoms, there are several things about this that make it hard for me to believe this is gout:

A. It only even happens after I’ve done something playing sport (but bizarrely, always 3-4 days after). I have never had a spontaneous attack.

B. My uric acid test last time was low.

C. I have no family history of gout, I drink 7 units of beer and 7 of red wine a week, don’t overdo the seafood or other foods supposedly rich in purines, and am in the middle of my healthy BMI range.

What do you think though? Does my experience chime with any other gout sufferers or do you think it more likely to be something else (tendinitis, sesamoiditis maybe). What should I be doing or saying to my doctor? I have had problems with my kidneys in the distant past and have next to no function in one and slight damage to the other so worry that if this is gout I will start causing problems, but at the same time I don’t want to start treating gout if I don’t actually have it!

Thanks for listening – sorry it’s so long. This is all the stuff I wanted to say to the doctor that he didn’t have time or inclination to listen to.

[Keith Taylor]

Welcome to the gout forum @donkeyfumbler

Your situation matches similar experiences from many other gout forum members over the years. Gout diagnosis is very simple for many people, but when it isn’t, it is often really difficult to get the right answers.

The best option, when either diagnosis or treatment is complicated, is to see a rheumatologist. In my situation, at least my doctor had the sense to send me for x-rays to check for physical joint damage. When radiologists found nothing, they put me under the care of the rheumatology team. A very quick and painless joint fluid test revealed the gout.

If your suspicions are correct, x-ray or ultrasound would probably reveal the damage. So, the first question for your doctor on Friday is “Why didn’t you send me for an x-ray?”

You’ve made some references to your uric acid as “not high” and “low.” These descriptions are not very useful, though some doctors insist on using them. The actual number is vital. Anything over 0.35mmol/L is bad, but bear in mind that uric acid in the blood often falls during a gout attack. I don’t know what an acceptable value is during an attack. If gout is suspected, it is best to get tested as often as your doctor feels is necessary, and at least once a year.

The second question for your doctor on Friday is “What is my uric acid test result number and scale?” You can compare this to the multicolored table “Stop Gout With Safe Uric Acid Levels” below in the right sidebar. That also shows the different scales used by different labs, and links out to more information about uric acid levels.

I agree with you that it seems unlikely that this is gout, but I’d have more confidence if I knew your exact results. Trauma can trigger gout attacks, but I really can’t understand why you haven’t been sent for x-rays.

Please let us know what happens on Friday.

[Keith Taylor]

By the way, Mark, as you are probably in the UK I should clarify “A very quick and painless joint fluid test revealed the gout.”

The joint fluid test was definitely painless. Though it’s true that the test itself was also quick, the 4 day wait in an NHS hospital was not!

• This reply was modified 7 years, 1 month ago by Keith Taylor.

[Unknown]

Thanks Keith.

I did actually have some x-rays done privately when I went to see a podiatrist after the second occurrence in 2011. He said they looked normal (and having looked at them recently and compared both feet, they do to my untrained eye too), but whether a rheumatologist would spot anything different I obviously don’t know. In the end, he was unable to say why I was having a problem but at that point the pain was very sporadic and there was little swelling to see.

I’m not great with needles and having read about the fluid test I was quite apprehensive, so it’s good to hear it was painless for you!

Once my blood test results come back, I’ll try and get some more specific information about the uric acid levels both for this one and the one I had back in 2010.

My thought that this might be gout is that you would expect a traumatic injury to get worse quite quickly after the event, not wait for 3-4 days before suddenly exploding. Maybe the trauma drives a sudden increase in blood to that area (and I have very cold feet at the best of times) that gradually activates the gout crystals as well over the next 72 hours – is that plausible though?

I guess what really bugs me is the total lack of concern shown by the doctor I saw, despite the fact that this has happened several times now and makes life very difficult for several weeks each time. If it is gout, surely there should be more than a ‘Take these painkillers and wait for it to get better’ and if it isn’t, I need to find out what it is to see if I can stop it happening again (and again).

[Keith Taylor]

The needles are very fine. I actually said something along the lines of “When will you start” and the response was “It’s done, you can go now and I’ll see you with the results soon”

Your thoughts about trauma causing gout are similar to mine. It’s certainly plausible. [pause while I look for more info]

It’s difficult to find information about the time between injury and gout attack. There is an interesting diagram that I’ve tried to attach here. It’s from “Revisiting the pathogenesis of podagra: why does gout target the foot?” at http://www.jfootankleres.com/content/4/1/13

If you already have uric acid crystal in your joints, trauma can activate them, but I would imagine that would be within a few hours. The other factors that the report cites may well take a few days. Of course, none of these situations are possible if uric acid has never been above 0.30 mmol/L

What really bugs you, also really bugs me. I guess this is not an appropriate time to joke, but when did that stop me. What your doc should really be asking is “When are you going to learn to play hockey properly?”

Sorry.

I look forward to reading your results. Please ask for all your uric acid test results history. 3 out of 4 doctors cannot interpret those results properly.

[Keith Taylor (GoutPal Admin)]

The diagram about factors affecting gout is:

If the diagram does not show, please click the link above.

[Unknown]

Thanks for the info Keith. My foot is still very painful and last night was particularly bad, possibly because I wrapped a warm wheat bag around it before I went to sleep as it was cold and swollen (my feet are always icy cold at the best of times). It varies now between feeling like constant cramp with the occasional shooting pain if I move it in the wrong direction.

I had the blood test this morning so will report back with results when I get them next week.

[Keith Taylor]

I don?t think the warm wheat bag would make pain worse. They?ve always had the opposite effect in my experience. Keeping exposed joints warm is particularly important for gout sufferers. I used to rely on bed socks. As the weather gets colder, avoiding temperature drops, particularly in feet and hands is important.

I’m looking forward to seeing your uric acid blood test results.

[Keith Taylor]

This post prompted me to find the gout calculator, I just described at https://gout-pal.com/gout-pal-forum/please-help-my-gout/gout-calculator/

From the facts I could muster from this case, it gives a 40% chance of gout. It will be interesting to see how actual uric acid test values affect that calculation.

[Unknown]

Thanks Keith. I had a look and from the boxes I ticked, my result so far is a 0.5 if I assume that previous events were gout/arthritis related too?

Male
Previous reported attack
Joint redness
MTP1 involvement

If my uric acid test comes back over that limit, the result goes up to a .86

I’m not too sure what it means when it says onset within one day, but ticking that box didn’t make much difference to the result anyway.

[Keith Taylor]

OK, I didn’t check the ‘Joint redness’ so that accounts from the increase from 40% to 50%. All that means is that on current knowledge, there is a 50:50 chance that you have gout. I think the only sensible signal that generates is to get a certain figure so we know if your real risk is 86% or 50%.

If it’s 50%, you have to see a rheumatologist, in my opinion. The treatment for gout would be to lower uric acid to below that limit, so it would not apply. By the way, my recommendation is because gout is really all I know about medically. A qualified doctor might be able to suggest a better specialist. This decision might be tempered if your uric acid is only just below that level. A cheaper alternative to referral to a specialist might be another blood test in 2 weeks if there are doubts.

If it’s 86%, I would treat it as gout. Get uric acid down to .3mmol/L and assume the problem is fixed, unless it recurs.

There are nuances to uric acid levels that make treatment very personal. It’s easy for me to imagine many different possible scenarios. The only thing that makes sense is to consider the possibilities when we know the exact uric acid figure now, and also what it was from previous tests.

The onset within one day seems to have no effect. I can’t understand why it is included if it makes no difference, but I haven’t had chance to check the calculation yet. Because it is just pulled from the authors website, it is difficult for me to match the calculation to the original report. All it means is did the pain go from nothing to extreme within one day. What you describe in step 3 of your original post indicates this is the case. It’s certainly a common factor in gout, but I don’t know the profile of the other types of arthritis that it could be.

(update: do not worry about onset within 1 day: https://gout-pal.com/gout-pal-forum/please-help-my-gout/gout-calculator/#post-17476 )

This is where a rheumatologist is useful. As they can test for pseudogout and septic arthritis, they can rule on some of the other possibilities. I know nothing about psoriatic arthritis, which is another possibility, except that it is usually accompanied by scaly skin.

• This reply was modified 7 years, 1 month ago by Keith Taylor. Reason: Update for gout calculator factor

[Unknown]

Hi Keith,

I now have the results back. Again the doctor has said that the level is ‘normal’ but I did ask for the actual numbers for this test and the previous one which are:

2014 – 0.37
2011 – 0.40

which are both slightly over the 0.35 on the gout calculator, though according to the doctor it is only over .42 that it is classified as ‘high’.

The doctor I spoke to over the phone suggested I make an appointment to discuss these results with a doctor but seemed to suggest that it now did not seem likely to be gout.

What do you think?

[Keith Taylor]

Mark, I’m absolutely gutted for you. You have one of the doctors who does not understand gout. I’ll refrain from ranting about the idiocy of a doctor who thinks like this. Does he have similar outdated cut-offs that declare lack of interest for other patients? Does he say come back in 6 months because you are only a little bit pregnant, or only have a little bit of cancer? Oops, I didn’t refrain from ranting, did I?

I am certain that you have gout. I believe your attacks were triggered by the trauma of hockey field incidents. I believe you have had a slow buildup of uric acid crystals over many years. I believe your gout will get worse unless something is done to get your uric acid down to 0.30. If this is in doubt, the next stage is a joint fluid analysis at a rheumatologist who has immediate access to polarizing microscopy. Immediate access is important because uric acid crystals dissolve if there is any delay between sample draw and analysis.

Anyway, the good news is that I’ve been in exactly the same situation, so I have a way out of this. To set the scene, I should point out that I attend a group practice with online appointment booking. It allows me to avoid doctors who behave like this. Other people on the forum have reported that they just educate their doctor until they get what they want. I’ll tell you my story, and hope that others who have faced this will join in with their experiences. I’m going to talk British for a while, then switch to American at the end.

When I first got a similar response, I was half expecting it, but not fully prepared with the correct references. I was a little flustered, but I pointed out that .42 is a only lab statistic. It is based on sampling from all blood tests processed by the lab in the period it set it’s reference ranges. Those samples include people with gout, so the value is meaningless. I’ve since refined this to also point out that the crystallisation point of uric acid at normal body temperature is 0.4 mmol/L, but joints are usually lower temperature, especially at the extremities (feet and hands).

I then went on to point out that the upper limit according to British Rheumatology Guidelines is 0.30 mmol/L. In my situation, I was determined to start allopurinol treatment, and I got my way with the 100mg starter dose.

Allopurinol has to be started at 100mg as a safety check, then increased until target uric acid level is reached. I had to make a follow-up appointment for dosage review, but I chose a different doctor. According to him, dose was probably OK as I was “not too high.” I repeated my explanation and was told to go to 200mg allopurinol daily. I had a similar situation with my next follow-up, again with a different doctor. I was fearing a real challenge with my fourth doctor, but he actually listened and agreed with me. Dr Chambers is a superstar amongst doctors.

Mark, I really feel sorry that you’ve been let down like this. I know how I felt when my confidence in my doctors was broken. I console myself with the knowledge that doctors have to deal with thousands of diseases, and can’t be expected to be up-to-date on all of them. My experience that 3 out of 4 doctors do not understand gout is borne out in several studies.

It’s now up to you how you want to deal with this. Most doctors are very opposed to patients telling them what they have read on the Internet. I avoided any mention of the word, and just said that the upper limit from British Rheumatology guidelines is 0.30, that the lab statistic was meaningless, and that I wanted my allopurinol. Maybe 1 of the 3 wrong doctors took trouble to check the guidelines and update their procedures. Maybe they left notes on my record. I don’t know that, but I got what I wanted.

In my case, I’d already allowed years of gout to damage me, so I knew I had to take allopurinol immediately. The highest target is the aforementioned 0.30 mmol/L, but I wanted to go lower for at least a year to get rid of old uric acid crystals faster.

Your case, Mark, is obviously very different. If you want links to the facts about uric acid levels, I can give you them. If you want to explore lifestyle adjustments, I can give you help with that. If you want a better explanation of anything I’ve written here, I can try to do that also. Let me know how you want to prepare for your doctor’s appointment, and I’ll try to give you all the help I can.

I’ll finish with a note to my American friends who are reading this. Gout is the same in UK or USA. USA has a uric acid crystallization point at normal body temperature of 6.8 mg/dL. That means anything over 6 is dangerous, and your upper limit for safety is 5. The American Rheumatology guidelines match the British in most respects. The numbers are a different scale, but the principles are the same. 3 out of 4 of you will not get the right advice from your doctor, so you either control it yourself, or allow your joints and organs to be slowly destroyed.

[Unknown]

Thanks for that very detailed response. Much as I might not want it to be true, I do agree with you and the evidence appears to be fairly compelling that I do have gout, regardless of the ambivalence shown by my doctor(s) so far.

Like you, my surgery is a group practice with an online booking system so I will try a different doctor next time to see whether they are any better, or at least show a little more concern than the first doctor I went to.

I did try to book an appointment today as I had a particularly bad night last night, having thought things were improving up to then. I’m not sure why it suddenly flared up again after a pain-free night the night before, though I suspect that the hot bath I had before bed was the cause – like the warm wheat bag before, I suspect that suddenly warming up my foot is not a good idea.

To be fair, the doctor I spoke to about the results over the phone did agree that I should book a second appointment to discuss further options when I told him that I was still in pain and unable to walk properly. When I get that second appointment, I will do my best to get them to refer me to a rheumatologist (and I have company-provided private healthcare if required so hopefully it should be fairly swift) who will presumably have more understanding of the problem and also do the joint fluid analysis to confirm gout beyond all doubt.

I shall try to take comfort in the fact that this, so far anyway, has only ever been brought on my injury or overworking my foot rather than any spontaneous attacks and that this is my first proper incident for three years, so I suppose things could be worse!

[Keith Taylor]

Wow, I love your positive response, Mark.

I have to admit to a certain amount of pride in my previous reply. It prompted me to write Doctor, do I have gout?

I’m obviously worried about how this will turn out for you, but I also worry about the thousands of other people in similar situations. You’ve doubled my resolve to work harder to get the message out. Professional rheumatologists have most of the answers for tackling the gout epidemic. We just need to make sure everyone looks in the right place and asks the right questions.

I guess we also need to make sure they get the right answers.

[kipper]

Hi Keith / Mark

I have not logged on here for sometime, though I do drop in every now and then and read some of the stories.

Marks story is the first time I have read anywhere that most closely reflects my still to a point dubious gout diagnosis. I have had attacks in both ankles once either side that came on within a few hours and was extremly painful lasting a few days. Both times I had had a small injury / strain of some sort before the attacks.

I have also had about half a dozen attacks in the left big toe, with the same sort of symptoms as Mark, with a few days of the joint feeling a bit stiff and then going from stiff to very sore within a couple of hours with each attack lasting a week or more. Again same as Mark I have an almost pin like sore point on the outside of the joint, if I push anywhere else the pain is very much less.

In all cases I had played touch football, rugby or had some minor injury before attacks.

This has all happened over about a 6 year period with visits to a few different doctors. I have had alot of blood tests done for auto immune diseases, high iron and a few xrays the list goes on, until recently my uric acid levels where always within “range” mostly between 0.42 and 0.49 ( I live in Australia) these where always taken during attacks. Under my own steam I had a set of bloods taken when I was not having an attack (about 2 months ago) with a reading of 5.6 I took this as good enough evidence that it was or is gout and I am now taking Allupurinol at 100mg/ day and to go back in another 2 months for another set of blood tests.

Hopefully this is the end of my gout diagnosis, but after reading your comments Keith in regards to uric acid levels and looking at the chart on the page I am not so sure. I was under the impression that 5.0 was sort of the cut off point for the ability of uric acid crystals to form? I will wait and see after my next blood test.

Any way long story thanks for reading and hope everything works out for you Mark.

Cheers for your work on the web page Keith.

Regards
Kipper

[Unknown]

Hi Kipper,

Thanks very much for taking the time to post. Although I’m obviously sorry you have suffered these attacks, it’s nice to read that someone has experienced the same kind of triggers and symptoms as I appear to have. Interesting that your level was higher on your own test and outside of the attacks (I presume you meant your previous results were 4.2mg and 4.9mg?)- it would be interesting to see what mine is in similar circumstances as I do understand, from Keith here and other sources, that the level does often drop during an attack.

Have you had any further attacks since taking the Allupurinol? Any side effects from it?

Finally, how is your circulation normally to your hands and feet? I ask because mine is very poor and I wonder whether that has an effect on when I get the attacks – the injury or over use prompting an unusually high rush of blood to the area that activates the gout crystals that have gathered in the joint.

Please let us know what your blood test results are and whether you do have further attacks. I am off to the doctor again later today (a different one) so I’ll see what she has to say about things.

Mark

[Keith Taylor]

Hey @kipper – thank you for posting. I can see a bit of potential confusion there, so I hope I can clarify.

USA scales for uric acid tests are in mg/dL. This is the scale I use most because most of my visitors are from America. If I’m in the middle of a conversation, I often omit the scale, but the scale is vital. In this conversation, I am mainly using mmol/L, which is the common scale in Britain and Australia. There is a factor to use to convert between the different scales which is roughly 0.6 when going from mg/dL to mmol/L. The most important number is 5 mg/dL which is 0.30 mmol/L.

0.30 mmol/L is the safe upper limit for a gout patient. Because I keep emphasising 5 mg/dL as the upper limit, occasionally people confuse this with 0.50 mmol/L. They see their results similar to your earlier results, ie less than 0.5 and think it’s OK, but it is actually very bad.

The situation is made worse by labs that issue reference ranges. Doctors who don’t know gout, don’t understand that these reference ranges are statistical *not* medical. Hence my rant aimed at Mark’s doctor who thinks that only values over 0.42 are serious. In many ways, around 0.40 mmol/L (around 7mg/dL) is just about the worst uric acid level anyone can have. It is at that sort of level where you get a constant barrage of new crystals forming and old crystals partially dissolving. Your immune system is in a constant state of alert, and painful inflammation can last for weeks.

0.30 mmol/L is now accepted as the safe upper limit because it gives a safety margin before the crystallisation point is reached. The way that uric acid crystals form is the result of many factors. In the lab it is 0.40 mmol/L, but in the wild, it is very easy for crystals to form below that.

Many use the midway point as a cutoff, but this is more down to historic practice rather than current scientific knowledge. I think that little gout calculator would make more sense if it used the lower limit of 0.30 rather than 0.35. The main point to understand is there is not really a fixed cut-off point for uric acid crystals to form. Some people can have very high blood levels, and no trace of crystals, but these are exceptions.

I think it is best to play safe, and assume anything over 0.3 mmol/L (5mg/dL) is gout. This is an effective level for diagnosis and for treatment. The only thing I would add is, if uric acid is between 0.3 and 0.4 mmol/L at diagnosis stage, I would recommend lifestyle changes before medication. That is in addition to a review of other medicines, which is always important before starting uric acid lowering treatment.

[Keith Taylor]

@donkeyfumbler I’ve been thinking about your statement: “I?m not sure why it suddenly flared up again after a pain-free night the night before, though I suspect that the hot bath I had before bed was the cause ? like the warm wheat bag before, I suspect that suddenly warming up my foot is not a good idea.”

I’ve seen other references to heat being bad for inflammation, and I’m going to investigate this further. I’m thinking that it is probably best to simply keep joints at normal body temperature. I.e avoid cold where possible, but not artificially raise temperature. There is an argument about applying ice. It should definitely reduce swelling and therefor ease pain. Personally, I’m against icing because it creates an environment where uric acid crystals are more likely to form. People must make there own choice on this, as pain relief in this situation might be more important than a temporary increase in uric acid crystals. That temporary increase is unlikely to make pain worse, so it definitely a personal choice.

Sorry if anything I’ve written earlier is confusing on the heat v cold issue. I think I need to review my guidelines and make sure they are fair.

We’re all learning!

[Unknown]

Well the Doctor I spoke to today was much better. She seemed much more willing to listen and also more clued up about gout in general, as well as being fairly happy with the diagnosis of gout. She was aware that test results can be lower during an attack, so I will need to arrange a blood test for a few weeks time, once this attack is over (hopefully).

I was prescribed so Co-codamol to help with the pain I am currently getting at night and also some Allupurinol and Naproxan, to be taken after the blood test to see how that gets on with lowering my uric acid levels – the doctor was of the opinion that as I am not overweight, a heavy drinker or regularly eat purine-rich food then any lifestyle changes I might make would have a fairly negligible impact on my levels.

Edit: Oh and I should just say that despite keeping my foot out of the bath last night and keeping it fairly cool, I still suffered just as much during the night as the previous night, so maybe heat wasn’t to blame. Still, its very odd (and frustrating) that I should be pain free during the day (unless bending my toe) but in such pain about two or three hours after going to bed. Any thoughts as to other reasons that should be happening?

• This reply was modified 7 years, 1 month ago by Unknown. Reason: Additional info

[kipper]

Hi Mark and Keith

Sorry about the confusion the uric acid readings are in mg/dl. The first two readings should of read 4.2 & 4.9 mg/dl.

I have only been on the allopurinol for about 1 month so I have not shown any sideffects so far. I have had a liver function test done though as I beleive the allopurinol can affect your liver if your unlucky. I am hopeful this is not the case for me as I am already allergic to NSAIDs and do not like taking the steroidal ones as they are not real good for you, so when I get an attack I just have to take a few pain killers and ride it out. I have not had an attack for about 4 months now.

My circulation is pretty good to my knowledge as I do not suffer from cold hands or feet.

The more I think about it the more I am convinced it is gout as over the years the intervals between attacks has slowly decreased. A family history as well with my mother and brother also suffering. Though I would like very much to get a positive diagnosis just so I can get on with dealing with it.

I will let you know how I go after my next lot of blood tests which will be in about 2 months.

Hope everything goes well for you Mark and sorry about the confusion Keith.

Regards
Kipper

[kipper]

Mark

Just a quick one have you tried elevating your foot on a couple of pillows at night?

[Keith Taylor]

Good news on the doctor front, Mark. Looks like you’ve found a good one there, and have a good chance of controlling your gout.

The pain at night thing is tricky. I have a couple of half-baked theories, but I can’t find any solid explanations. Though pain at night is emphasized in many gout studies, I have only found one that offers explanation. Hart’s “Pain patterns in the rheumatic disorders” suggests that one reason may be lack of distraction. That ties in with one of my theories. During the day, I am always busy. Before I got my gout under control, If I woke with gout pain, I found I didn’t notice it so much if I read for a while.

The other thing I found was the keeping warm that I mentioned earlier. Not heat, but an emphasis on lack of cold. Gout in the foot – wear thick socks. Gout in the knee – get the long-johns on. I never did any score keeping with or without these interventions. I’m a great believer in scientific research, but I have my limits when it come to the tedium of record keeping.

To @kipper it sounds like you may have had episodes of gout, but it appears to be under control. In that case, blood tests at leas once a year to monitor uric acid are a great idea. I look forward to your update in 2 months.

[Unknown]

I haven’t tried pillows at night but I have found that, when it is particularly swollen, then raising the foot works, but when it is hurting but not too swollen, as has been the case the last couple of nights, then raising it actually makes it worse – go figure! Also, I’m one of those people who simply cannot go to sleep on their back unfortunately.

I think distraction during the day certainly plays a part sometimes, but this is definitely a case of there being little or no pain (when not moving) when I first get into bed, which then gradually grows into extreme pain over the next two hours. Last night fortunately the co-codamol did it’s job and I was able to have a relatively pain-free few hours.

I have been trying to keep my foot warm but not hot, as you advise, by wearing thick socks and slippers (when it’s not too painful to get those on) but I struggle to keep my hands and feet warm at the best of times. I have a feeling my poor circulation really does not help my cause and may be one of the reasons I am still suffering after almost two weeks now.

[Keith Taylor]

“Also, I?m one of those people who simply cannot go to sleep on their back unfortunately!”

I think you are very fortunate with that. Sleep apnea is very complicated, but for me, I stopped it by training myself to sleep on my front or side. That was in my early days with GoutPal when someone (Burt?) brought up the subject in relation to gout. I hadn’t realised until then, and I still don’t know if there is a link between sleep apnea and gout, but I sure do feel safer sleeping and breathing.

I’m glad the co-codamol is helping, Mark. Gout itself is bad enough, but gout and no sleep is worse.

[Unknown]

So it’s now been 2 1/2 weeks and it seems to have got stuck in a pattern where it is just about back to normal when I go to bed, but then if I don’t take the painkillers I get woken up by the pain gradually increasing after about 2-3 hours asleep.

When I wake up in the morning, the pain has slackened off a bit but it’s now swollen, stiff and painful to bend but then gradually through the day it eases off, the swelling goes down and by evening it’s almost OK again.

I have read that you should keep the joint rested and raised as much as possible, here and elsewhere, but for me resting it and raising it (as it is in bed) seems to bring back the pain. The more I move it during the day, the better it seems to get (after the initial pain). Is that normal? Should I be trying to exercise it more?

At the moment I’m beginning to think that this is the way it’s going to be from now until forever. I also worry that, going on as long as it is, it is doing some kind of more permanent damage 🙁

• This reply was modified 7 years, 1 month ago by Unknown.

[Keith Taylor]

“The more I move it during the day, the better it seems to get” That is exactly my experience also.

“this is the way it?s going to be from now until forever” I’d be optimistic and say this is the way it’s going to be until I get uric acid down to 0.30mmol/L (might be a few weeks after that, but I don’t want to suppress the optimism.

Exactly what is happening with the allopurinol? If you’ve started it, you are on the road to recovery. However, the first few weeks are the worst, as you have to start slowly increasing from 100mg/day. It’s a wonderful turning point after a few weeks at safe uric acid levels when you start to forget what gout pain feels like (poetic license – I know you never really forget)

[Unknown]

I haven’t started the Allopurinol yet – I was waiting for this attack to end, then have a blood test in 3-4 weeks and confirm that my uric acid levels were the same if not higher before starting on it. Only problem is that this attack seems to be going on for ever.

[Keith Taylor]

OK, so the last result was 0.37 mmol/L. Now, I have a real ‘bee in my bonnet’ attitude to anything around the 0.40 range. Let’s say 0.36 to 0.44 for the sake of this, though a few points either side might be included. I don’t have an adequate name for this range, but for now, I’ll call it Gout Hell.

The danger of ‘forum medics’ is that anything I say here could easily be denounced by a specialist examination. I’m not offering medical advice, but I’m suggesting a situation that can and does happen. Your pain might be something else, so I have to recommend that you see your doctor if you are worried.

Back to Gout Hell. It happens in the range I mentioned. Every gout sufferer is different, so the Gout Hell range for uric acid will differ from person to person. The principles are:
1) Uric acid fluctuates naturally from day to day, and during the day.
2) At a certain point, crystals will form when uric acid gets too high. Again, the crystallization point varies from one person to the next.
3) Crystallization point is affected by uric acid concentration, temperature, and some other factors that scientists are still trying to isolate.
4) When crystals form, they are recognized as intruders, and attacked by the immune system, resulting in painful inflammation. The immune system creates a coating around the crystals, so they are no longer an immediate threat, and inflammation subsides naturally.
5) When crystals form, soluble uric acid levels fall. The mirror of this is uric acid levels rising as old crystals dissolve.
6) When crystals start to dissolve, the immune system coating tends to shed, so partially dissolved crystals are exposed to the immune system. This is the reaction we often hear about from people who start allopurinol or other uric acid lowering treatment. It is important to note that it is not a side-effect of any particular treatment. It is part of lowering uric acid, and it can happen in response to natural fluctuation, or diet improvement, as well as uric acid lowering medicine.

Taking all these principles together, in the Gout Hell zone, you find a constant fluctuation of uric acid levels around the crystallization point. This means crystals are constantly dissolving and reforming, so you get continuous inflammation, and prolonged gout flares. These days, we are learning that this inflammation is made worse in the presence of certain fatty acids, but we do not yet have any clear guidance on how to reduce fatty acid related problems.

I’m not sure if any of this really helps, Mark, but it might explain what is happening to you. It might end tomorrow, or it might continue until you get uric acid under control. I don’t think anyone can predict. I certainly wouldn’t know what is the best thing to do now. It would be very easy to say: Start the allopurinol now, and get uric acid to 0.30mmol/L. Only you know if that is right for you.

[Unknown]

Hi Keith (and others reading),

I had my second blood test on Friday and this time it came back as 0.47 (it was 0.37 back in October). I’d left it longer to have the second blood test as I was still (and am still) having some discomfort in my foot/toe. It’s not what I would call painful – it’s slightly swollen most of the time, which I can only tell once I have put on shoes and it is tighter than the other foot, but it does occasionally get hot, red and more swollen from time to time (but without any accompanying pain fortunately). Occasionally it will jarr when I bend it to much or swivel on it quickly but I can walk just about OK on it now.

I had thought gout was more short sharp attacks, which can occasionally last longer rather than this constant low level swelling and mild pain?

Anyway, the 0.47 has done enough to convince the Doctor that I have gout so I’m now left with three choices as I see it:

1. Do nothing – hope that eventually the swelling and discomfort finally dies off, as it did (but much more quickly) three years ago. I only ever seem to get attacks after I injure my foot and this is the first for ages. Maybe I just grin and bear it (and take lots of painkillers).

2. Try lifestyle changes and hope that helps – drink cherry juice, stop the beer, wine and red meats etc. I had deliberately not changed anything up to the second blood test as I wanted it to be a measure of what the level was without doing anything. I think though that from your past posts, lifestyle changes alone would not be enough to take the level down from 0.47 to the safe level of 0.3 or below. Presumably though, if I do lower it even a bit, it lessens my chances of another bad attack (or is that not how it works?).

3. Take the Allopurinol that the Doctor has prescribed and see how that works. I am a bit worried about potential side effects though and have heard that there is a small chance of suffering and extreme, and potentially fatal, reaction to it. Also, the thought of taking a drug for the rest of my life is depressing as I prefer not to take anything if I can help it.

Be interested to hear your thoughts Keith (as always) as well as anyone else who wants to chip in? Maybe Kipper has had his second test too?

Thanks,
Mark

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