Living with Forestier's disease

I have finally found info on Forestier's disease!!

When I was first diagnosed back in 1988 my doctor had no material on this subject. I was told to go home and find it on my computer, which I did. There was a researcher in Canada who hit the nail right on the head, Forestier's is no pick nick! He was so right!

When I was first diagnosed with the disease, I was in a lot of back pain. I had x-rays done and this article is correct....my vertebral area looked as if I were leaking wax. I saw all sorts of bony hooks hanging from each and every vertebrate and I was in a lot of pain; but my doctor at that time said I couldn't be in pain, as it wasn't painful??? On the contrary, the article I was told to research stated that there is a great deal of pain associated with the disease and eventually it would be crippling and that is where I am, 20 years later.

At the first time I was diagnosed, I didn't know that my choking could be associated with the disease itself, I thought it was just asthma...after all \"it isn't that bad.\" I was placed on many anti-inflammatory medications. I was place on one that I suddenly would loose my speech and get confused...I was told they might be TIA's. Later this particular drug was found to do just that. Since it wasn't helping, I was put on another anti-inflammatory and the doctor doubled the recommended dose and later I found that the sphincter muscle to my stomach and been burned away from too much of a good thing.

I was told not to see a chiropractor and for good reason! I had a complication from a surgery and they had to knock me out in order to go down my throat....while under someone turned my head further than I could myself and broke a facet in my neck; now I have plates in my neck and need more surgery....Once my neck was repaired, I didn't choke any longer. Right now, the disease has gotten so bad that I have many areas of stenosis and nerve root cut off. The neurosurgeon who performed my first neck surgery stated that every opening that allows the nerve roots to channel through my body was loaded with razor sharp spurs. This is just the spinal region of my body.

I am beginning to calcify at every ligament insertion site. I have bony over growth in my feet, which interfere with the articulation of my foot joints. I can feel the bones sticking out of my ankles and the tops of my feet; I'm beginning to fuse in my left foot. In three weeks I'm heading for a double knee replacement because my left knee can't support my knee cap; over growth of bone has pushed it away. It is getting more and more difficult to participate in daily activities as my range of motion is becoming limited. My elbows and my shoulders are affected as well...I can feel bony growth there as well. I'm losing feeling in my legs, as my nerves are being pinched; the pain shoots down to my feet and it is gripping. My hands can't grip a phone for any length of time.

I found if my pain can be controlled, I can function well, but too many doctors are not up on the pain this disease produces. Controlling the pain keeps me moving, and that is what you need to do, but the support isn't there for this. The disease is so rare that it is brushed off as regular osteoarthritis and it isn't, it's no where near the same.

I was diagnosed in my thirties and I have lived with chronic pain for over twenty years now. I was told that it affects mostly males over the age of 70....bunk! It is genetic, as my mother had it and wasn't properly diagnosed with the disease and my brother has it as well. My mother and I were deeply affected, she had it her feet as well and by the time she reached 70, she couldn't walk without crying in despair.

I had one doctor treat me with Suboxone and it was the only drug that gave me back the quality of life others enjoyed. He left for the north and I am back in severe pain once again. The problem with this disease, it's a square peg and everyone wants to fit into a round hole. I try to keep a smile on my face for my families sake, but the pain can be read all over my face. I'm still young, by today's standards and I just want to be a participant in this life, not stuck in some corner watching my life and the world go passed me.

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