Patient Comments: Hydroxyapatite Crystal Disease - Personal Experience

Question:

Please describe your experience with hydroxyapatite crystal disease. Submit Your Comment

Comment from: mealone, 65-74 Male (Patient) Published: August 24

I have a couple of new things with hydroxyapatite crystal disease; a new hard lump on my right leg to the side of the shin similar to my right wrist. I don't know if this is related, but I also keep losing my balance, not yet fallen over with it as I manage to halt it, but it worries me a bit. Pointless going to see my general physician (GP) just yet. I am having to take three tramadol tablets when going to bed, as 2 don't quite cut it anymore. I don't know if my comments are helping anyone, I hope so, as there isn't much else about this seemingly rare disease.

Comment from: mealone, 65-74 Male (Patient) Published: June 22

June 2021, my ongoing comments regarding this hydroxyapatite crystal disease. My feet and ankles are giving me the most trouble now. Walking is restricted and standing is almost impossible for more than a couple of minutes. The savage shooting pains are lasting much longer and almost double me up each time, which is 50 plus times a day and night. Sleep is whenever I can get it no matter what the time. Hands, wrists and the rest are still bad, I keep dropping things when pain shoots through them.

Comment from: Randi, 55-64 Female (Patient) Published: December 22

I was recently diagnosed with hydroxyapatite deposition disease, but have been in pain since 2006. It started with what I call buttock pain (gluteus medius and maximus), so sitting is torture. I have had terrible neck pain for years (had anterior cervical discectomy and fusion surgery at C-4/C-5), but then my shoulders began to hurt. I had Tenex for left shoulder, but it did not work. Wondering if anyone has taken any medications that have helped.

Comment from: mealone, 65-74 Male (Patient) Published: August 28

August 2020. My feet and ankles are now giving me bad pain when walking, they were the second area to be affected by hydroxyapatite crystal disease. With my full weight being on them the pain is constant and sometimes chronic unless I sit with my legs raised. My shoulders once again flared up after a couple of months of not being too bad, but this is how it seems to go. Hands and most fingers are also in constant pain, even when doing the slightest movements. Luckily cold water still helps with the swellings on joints of hands and fingers.

Comment from: mealone, 65-74 Male (Patient) Published: February 14

I have hydroxyapatite crystal disease. This is February 2020, getting much worse now, my lower spine and neck are now affected. Plus lumps in my right wrist have got bigger, and now a 4 inch lump has grown on the side of my right forearm. Now I am taking opiates more often but, I still try to rest rather than take more of them as I know it will get much worse later on. Length of pain times growing longer than before with intense pain making me actually cry out. I tend to keep to myself now so family doesn't see the depth of my pain.

Comment from: mealone, 65-74 Male (Patient) Published: April 09

My elbows aren't yet affected by the hydroxyapatite crystal disease, even though my fingers, wrists and shoulder on both sides are, so I don’t know how or why it has missed my elbows. Funny how I hadn't thought of this before.

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

It is now April 2019, now my right hip has started giving me problems. My left hip sometimes gives way and I stumble. Only my spine and neck are yet unaffected, but in time they will be. Now walking more than 5 to 8 yards is about my limit. I started letting others know about hydroxyapatite crystal disease a few years ago, because there was hardly any information about it. I am pleased others are allowing their stories to be told to help more with this terrible disease to understand what lies ahead.

Comment from: Cf, 55-64 Female (Patient) Published: May 21

Three years ago I woke up with a stiff neck. I thought my head must have been in an awkward position when I slept that night. That was the beginning of 6 weeks of the worst pain I have experienced in my life. It was so painful but it was worse at night when I tried to lie down. My neck was stiff and the pain was excruciating. It radiated down my arm and my fingers were tingling and/or numb. It was terrible. The CAT scan results were not conclusive. The pain gradually went away after a long 6 weeks. It was exhausting. A year later I hit my arm really hard on the edge of a door; so hard I thought I could have broken a bone. It was sore but I thought it was ok. The pain continued for a couple of weeks. I went to my general physician (GP) and had an x-ray and they didn’t see any broken bones. The pain got worse every day. It was like the pain in my neck although I didn’t realize it. Eventually after about 3 months the pain subsided but I soon realized I couldn’t grab my seatbelt or fasten my clothes in the back. I couldn’t raise my arm past 45 degrees. I went back to my GP and they suggested physiotherapy. The physiotherapist was a shoulder specialist and diagnosed me with frozen shoulder. After 3 months of physiotherapy I returned to full motion and the pain went away. I also experienced severe tendon contractions on the top of both feet; sometimes at the same time. Sometimes the contractions run up the side of my leg. The pain is excruciating. It is not like the common charley horse; it is 1000 times worse. The tendon contractions also happen at night. I take Advil and if works pretty well. I got tested and the results for minerals seemed normal but my RBC has always been a little elevated. C-reactive protein was pretty high suggesting high inflammation. But still no diagnosis. I then had an ultrasound of all my vital organs and nothing serious. Through food elimination I discovered if I ate peppers the tendon contractions were pretty much guaranteed. I read about night shades (peppers, potatoes, eggplant and tomatoes) and find the symptoms of tendon cramping is familiar. I no longer eat them. Today I discovered hydroxyapatite crystal disposition disease (HAAD). It explained my frozen shoulder in relation to HAAD and then said it could affect other parts of the body. It explained my foot and leg tendon pain and to top it off linked my neck episode, C-reactive protein etc. Finally maybe there is a reason for all of what I call weird painful symptoms. I understand diet can help and the Advil I was taking for pain relief is recommended. So without knowing I figured out that Advil stops my tendon contractions on my own. I am scheduling an appointment to get tested for HADD. I will let you know if I figured out the connection. For anyone with HADD, I feel your pain and hope you find the remedy that works for you.

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Comment from: Lollieteacher46, 45-54 Female (Patient) Published: May 02

Thank you all for your comments. I felt this pain on my left shoulder in April of 2016. I cannot use my left arm to shampoo or dress up. Last April 27, 2018, I was on the computer for 4 hours. I felt my arm tingling after. While driving I noticed the pain was increasing. Throughout the night I was tossing and turning due to the left shoulder pain. By Saturday morning, the pain was excruciating. I went to Urgent Care, had x-ray and was diagnosed with hydroxyapatite crystal disease. They gave me meloxicam and tramadol injection. That night till Sunday, the pain continued. I went back to the hospital and they gave me Norco and 800 mg Motrin. Only then I felt a little relief. I am still in pain now, I wonder how long this flare up lasts.

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.

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.

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.

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.

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.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer