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Cystinuria Support Network

Symptoms

Renal And Ureteric Colic

Renal colic is often the first symptom which gives the doctors a clue to diagnosing cystinuria. Renal colic in young children and adults in the general population is rare. Kidney stones normally take a lifetime to grow. Only in people with cystinuria and patients with other stone forming disorders are stones present at a young age.

Renal colic is described as a moderate to severe sharp spasmodic pain in the back, side and groin area, often traveling from front to back. Over time it can be tracked downwards. Sometimes it is described as the worst pain a patient has ever had. It can be accompanied by cystitis and bladder spasms, especially when the stone has traveled that far down. Some people talk of transferred pain to the center of their back and in their bladder. They tend to describe this pain as 'excruciating, stabbing, feels like a knife twisting, doubles me over','it feels like someone sticking a knife into your side and slowly turning it' and 'sharp, stabbing pain'.

For most people the pain is a lot worse at night. This may be due to the fact that at night it is quieter, with less going on and very few distractions from the pain.

If the pain persists for longer than usual, some investigations are usually necessary to ensure that an obstruction is not the cause for the pain. An obstruction may be signaled by low grade pain in the area of the kidney following a bout of renal colic, patient sensitive to their kidneys being poked (often striking the offender), low or high grade pyrexia (temperature). Care should be taken with an obstruction as a renal infection may develop leading to septicemia.

Investigations would normally include an ultrasound to either find the obstruction and to measure the size of the kidney and either an IVP/IVU, MRI or CAT scan to find the obstruction.

If these investigations appear to have a negative result, the patient may still have renal colic. Even very small stones can be extremely painful, especially stones which have been previously broken up by lithotripsy or laser treatments and so have sharp jagged edges. These smaller stones do not always show up on investigations.

Chronic pain

Some people suffer from chronic kidney pain most of the time. This is often described as 'hard, achy feel to my kidneys most of the time', 'squeezing my kidneys in a vice, as hard as they can' and 'dull throb which wears me down'. This continual pain can cause a person to become 'worn down', snappy and difficult to live with. Apart from pain medications there seems to be little that can be done for this pain.

Depression

There has been discussion about depression. People were concerned that the essential amino acids that are not metabolized may lead to a deficiency in certain minerals, namely zinc. There is a well known correlation to depression and zinc deficiency. However, it appears that this is not the case. Many people suffer from a form of depression. This may be due to the nature of the disease. It is difficult to live with a condition which is not visible, extremely painful at times, and does not ever go away. Most of the procedures associated with cystinuria are painful, humiliating or both. For some people the disease can mean many in-patient stays in hospital, disrupting a normal lifestyle. These stays can also be without warning leading to the feeling of being permanently off balance and unable to plan. For people living in the United States and other countries without a national health plan, this can also lead to crippling medical bills which their private insurance just doesn't cover. They may find it difficult to find a permanent job, due to the amount of time spent in hospital.

So if you can imagine intermittent severe pain, humiliating procedures, unexpected hospital stays away from the family, huge medical bills and no job leading to the feeling of isolation. If you add to this the rarity of the disease, the overall lack of understanding/interest by the medical profession, having constantly to explain the condition over and over to different doctors, chronic kidney pain, no cure and having to plan around the nearest toilet/drinking place is it any wonder some people are depressed.

There are treatments for depression. The most common of these are anti-depressants. However, time is the best healer and the support of a loving family and network of friends. Being able to talk out the problems with other people with cystinuria is also a good treatment which is why organizations like the CSN and the online group are so valuable.

Hydronephrosis

Hydronephrosis is where the kidney is enlarged due to an obstruction. It is a very serious condition. If left untreated hydronephrosis causes the fluid in the kidney to become stagnant leading to kidney infection, possible septicemia and further complications.

Treatment is not pleasant but very necessary.

Tiredness

This is a big problem for many stone patients. It is characterized by that 4pm feeling when sleep is so attractive. It may be a symptom of underlying depression or could be due to nature of the disease, for example during a stone episode some people may have difficulty in sleeping due to the pain and worry.