Patient Comments: Hydroxyapatite Crystal Disease - Personal Experience

Please describe your experience with hydroxyapatite crystal disease.

Comment from: mealone, 65-74 Male (Patient) Published: October 04

This is update from 1/Sept/17. I now have hydroxyapatite crystal disease in both shoulders and both knees, and right shoulder is worse as I can't raise my arm above head height. My right knee is swollen and painful to bend. Only elbows, hips and neck are free of this disease. Rest is still the best treatment, but painkillers are used when pain is really bad. My 24 hour routine has gone adrift, as I now sleep when I can, and do my daily chores such as shower, eat, etc., at 2 pm even. I eat dinner now around 8 to 9 pm but it doesn't matter now. Just to get through another day is enough. Will keep you posted.

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Comment from: mollie, 55-64 Female (Patient) Published: April 03

I have been dealing with hydroxyapatite crystal disease for 13 years, it is 3/2017. It started with the pins and needles for a good year before the first little finger crippled. It is in all of my fingers, toes, ankles, knees and my back. No medicine helps this. Mind over pain is best, keep moving do not sit down. I have had a doctor operate on my fingers and scrape out the crystal and this has helped enough to be able to use them. Sugar makes my fingers stiffer, and pork, so be careful with your food. I do need a lot of rest, can't sleep because of my arms lots of nights, shoes hurt, my toes and my glands swell up, under my ears the crystals block the gland and then I take antibiotics. For a long time I thought I was the only one with this strange thing happening to them now I know that's not so. I just was told by a doctor this runs in families, I hope my children don't get this.

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Comment from: mealone, 65-74 Male (Patient) Published: February 16

Now it is 02/2016, 12 years after the pins and needles of hydroxyapatite crystal disease started, and both shoulders have now been affected. Sleeping on my left side is painful until I can get into a position where the pain eases. I take 50 mg Tramadol 2 tablets when the pain is too bad, but I try only take them when really necessary, as in the near future, I will have to be on them a lot. The next type of pain relief will be morphine based. My fingers are now locking when I try to grip, and opening them is very painful due to the clumps of crystals on the tendons catching on surrounding tissue. Palm of hands are also very painful holding things. My ankles and feet now are very painful when trying to walk. My best time is after I have been able to get about 4 hours sleep, as I often lie in bed for an hour after waking, as it's just nice to have less pain for a while. I hope to be able to keep letting you know how I progress with this disease, as there is hardly a thing online about this problem. I would love to hear details of how this disease progresses in later years.

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Comment from: mealone, 65-74 Male (Patient) Published: June 30

In 2004, I started with pins and needles in both hands. I eventually had carpal tunnel operation on both hands. However the shooting pains got worse. So 2 years, 3 specialists and dozens of tests later hydroxyapatite crystal disease was diagnosed. It is now in most fingers, both hands and wrists, most toes, both feet and ankles. Now my left shoulder has started with same symptoms. The hospital signed me off in 2008 as there was nothing more they could do. Rest is the best thing, and I use wine bottle ice sleeves with a cotton sock under to stop ice burns. The next range of tablets are going to be morphine based ones. I can only walk 20 feet before I have to sit, so a mobility scooter gets me around. I don't know of anyone else with this disease, so I hope this might help others.

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Comment from: Wood, 45-54 Female (Patient) Published: November 14

I have crystal substance in bones/joints throughout whole body including from head to toes. I have chronic pain.

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Hydroxyapatite Crystal Disease - Treatment Question: What forms of treatment, including therapy, did you receive for your hydroxyapatite crystal disease?

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