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disgruntled gout sufferer…

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1:14 am
July 10, 2008


christiandorr

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Well, I can't speak for the rest of the world of gout sufferers but it's time for me to speak my pain…

I am nearly 42 years old and have been dealing somewhat unsuccessfully with severe gout since I was 30.  I am highly intelligent and motivated but gout has taken it's toll.   

I just read another of thousands of accounts on the web where a new sufferer went to a dismissive doctor and they both chuckled about the attack.  Oh silly patient… it'll be gone in a day or two here's some colchicine and tylenol. 

My experiences with so-called professionals, and so-called home remedies and miracle drugs that the world prescribes for a clearly controllable disease is entirely false… at least for me. 

11 years of pain and failed attempts to ”control” my affliction has simply culminated in my stern belief that gout cannot be controlled.  In me, gout has defied all logical attempts to control it.  

If you can't tell, I am gouty now as I lay on my back in bed writing through the pain.  My right foot, ankle and knee are severely painful.  And based on visits to my idiot doctor (who seemed to see tophi growing from my ears… not so) my liver enzymes indicate that the last serious attack I had, brought along with it an added benefit of liver damage due to massive quantities of tylenol to control the pain. 

Colchicine made me severely nauseated enough to land me in the ER and I don't dare take allopurinol for fear of more liver damage… I'm even afraid to take pain killers anymore.

I read one site and it tells me tylenol will raise uric acid… I go to a doctor and he prescribes me tylenol.  I go to another website and salt is to be avoided… but others say put the baking soda to you.  The last-hopeful-period ending in my current painful state led me to believe cherries might control it… I've eaten two pounds of cherries and have drunk two gallons of water with cherry fruit extract consistently since this onset began three days ago. 

I can't believe any remedies anymore and I don't know how much longer I can stand the pain.  I wish I could be a normal gout sufferer that pops a pill and everything is rosy again.  Are there others with the severity of my affliction or am I one in a million?

Chris

10:42 am
July 10, 2008


GoutPal

Admin

posts 176

Thank you for that, Chris.

This is the best gout forum post I've seen. I need to read it every day to relight the fire in my belly and redouble my efforts to get a better deal for gout sufferers.

As you rightly say, gout is controllable, yet there seems to be no effort, or will to control it by the medical profession.

Neither is this country specific - I get the same feedback from gout patients throughout the world.

I believe that this is partly due to the arrogance of many members of the medical profession who see gout as a self-inflicted joke.

Mainly, it is due to the lack of clear direction from the experts. They advise dealing with pain first, and uric acid if the pain becomes recurrent. This leads to confused messages to gout patients who believe the only answer is a few pain killers. Many gout patients feel they might as well buy pain relief over the counter, rather than suffer the indignation of another unsympathetic consultation.

In my mind, this is little different from giving a gunshot victim a few pain-killers and asking them to come back if they have any further trouble. It's nonsense:

  1. Get the bullet out
  2. Promote healing for damaged tissue
  3. Treat the pain

Pain relief alone for gout sufferers is equally nonsensical:

  1. Get the uric acid level down
  2. Promote removal of urate in joints and tophi
  3. Treat the pain

I have less respect for the legal profession than I have for gout, but I am moving towards the belief that the only way to get the medical profession to wake up is to sue them.

The only way to treat gout is to get uric acid levels down below 6mg/dL. If your doctor doesn't even try to do this, they are negligent.

Sue them.

3:59 pm
September 11, 2008


Giovanni

Guest

That is a terrible story chris. Many of us have similar tales of unsympathetic doctors who know nothing about gout in general, let alone prescribing a course of treatment that will allieviate the problem. I immagine that the doctor prescribed you tylenol with codeine, which does absolutely nothing for inflammation. The worst attack I had in my life ocurred in my left knee. It would not go away, Indocin did not touch this attack plus it made me sick. I could not get control of the pain and I was immobile for a month. I finally went to the ER to have the fluid removed. 32 ounces of yellow synovial fluid was taken out of my knee. Once the fluid was removed, the pain was reduced but I was still immoblile. The doctor gives me Motrin, 875 milligrams every 8 hours. No steroids, no cortison injection. At that time, I did not know enough to ask the doctor for such things.

Motrin did nothing for the pain. Nothing. The fluid returned, the pain increased, and the gout continued for 6 weeks. I returned to the ER and the doctor tells me he wants to give me narcotic pain killers. I told him I do not take narcotics. I won't take narcotics. He says..”well, you are not leaving me with alot of options…” I said, it's an inflammatory condition, a narcotic will not treat the pain problem. So I left the ER disgusted. 

I could not walk for most of this period of time. If I were not self employed, I would have been fired from my job. Finally, I decided to return to my doctor who first diagnosed me with gout. I trusted him. I gave him the details and he agreed that a narcotic would do nothing but numb my body and possible addict me if I took it regularly. I was questioning my sanity at this point. I could not eat and I was losing alot of weight. The doctor left the room and came back with some samples of Vioxx. Yes, Vioxx. He told me exactly what to do and I followed his instructions. One dose, and I was able to walk. Two doses and the pain was gone. I took it for 4 days and I was completely pain free. I went back on Allopurinol and the rest is history.

As you all know, Vioxx has bee taken off of the market. But there is a lessen to be learned here. First, is find a doctor who knows about gout and who takes it seriously as a medical condition. Secondly, find a doctor who is not incompetent, ready to hand out narcotics like candy because he thinks pain is pain, no matter what the condition. Gout pain is not like any other pain. I often say, I wish some of these doctors would have this pain just for one day, and then maybe they would know what the hell we are dealing with. We all know the inflammation caused by the uric acid crystals must be addressed before the condition itself can be treated. Some of these doctors do not even realize this fact. They think that once the pain is relieved, everything will be fine. My doctor gave me Vioxx, an arthritis drug, to deal with the inflammatory condition. It worked unlike any other drug I have used to abate the pain from gout. I would call it miraculous. Unfortunately, I cannot use it now. But these Cox 2 inhibitors to treat arthritis and inflammation worked for me. I would venture to guess that it may be effective for others as well because it directly addresses the problem and attacks the inflammation. Tylenol with codeine, Percacet, Darvacet or Oxycodone do nothing at all except make you physically sick and addict you. This whole notion of just throwing pain killer at a patient and everthing will be fine is a joke.

Chris, I would suggest you go to a nephrologist or kidney doctor as well as a consult with a liver specialist so you can take allopurinol or maybe even fuboxostate when it is approved by the FDA.


3:24 am
September 12, 2008


pr0230

Swollen Joints

phila, pa

posts 4

Not to insult Chirs , since you are a long term gout patient…. But some basics…

1: lots of water 1 - 2 gals per day… 

2: test your drinking water with Ph sticks - PH-ION…. My city water is slightly acidic 6.5… I mix 1/2 gallon with an aspirin size pinch of baking soda )sodium Bicarb… If done correctly the water should feel silky… If it gets salty tasting the PH is higer…  For regular driking water you just want it silky.

3: No alcohol, no meat, no smoking…

4: Try to get your uric acid PH - UP -  slightly alkaline -  read the thread on this forum about minerals & gout…. 

5.  Restrict you diet to good fruit (bananas, canteloupe, blue berries) - avoid apples & oranges, strawberry…

6.  No whole grain healty food… Bad for us…  Eat rice & corn cereals… Milk & eggs are ok…

7. start a simple diet,  but NO DIETING… do not loose weight at this point…

Hope this helps…

Joe, Philadelphia. PA


10:30 am
September 12, 2008


GoutPal

Admin

posts 176

As this is an open forum, I am very loathe to censor, and I will not here, but please note:

  1. When advising what to eat or not to eat, please take some time to say why, preferably with some reputable sources. A separate post is fine, and better to read than a long post about several different things.
  2. Weight loss is a good thing for gout sufferers, as it reduces strain on the joints, and usually reduces uric acid production. The important point is that you must do this slowly - a pound or two a week is sufficient. Do not starve, or else your body burns tissue like fury, resulting in a massive uric acid increase.
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