Living with Forestier's disease
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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.
12 likes, 213 replies
joe_50482 Guest
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dan_16590 joe_50482
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paul03565 dan_16590
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deborah46099 joe_50482
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joe_50482 deborah46099
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deborah46099 joe_50482
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Well mine has gotten so much worse in these past 3 years. I can no longer walk far or swim. I'm taking as few pain pills as necessary to just get through days, and getting steroid shots for a little more relief, but nothing new to help us has been invented. I'm in Arizona and had one surgery last year in Las Vegas to remove some cysts that were cutting off the spinal fluid, but it did nothing for the pain. I am constantly seeking out new pain clinics with new doctors, hoping for one with some new ideas. But now that America has this stupid Obamacare doctors and insurance companies are jumping ship daily. This new war on opoids is not helping either. We have to go every month and do utine tests to prove we are taking our pills and are generally treated like a criminal at the pharmacy when we put in Prescriptions that we really NEED for REAL pain. I find myself getting depressed and angry that my life will never be good again. No vacations or exercise because of the pain. Will be 65in a couple of months and I walk like I'm 85. Can't turn my neck or bend my back to get in and out of the car. Does anyone out there have any positive news to report on this horrible disease?
Thanks for letting me rant. Tomorrows another day.
wsj333 deborah46099
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Oh Deborah, I totally understand. I was diagnosed 2 yrs ago at the age of 48. I'm now 50 and all of a sudden things are progressing rapidly. While I understand this is a rare disease and most dr's know little about it, I am truly shocked that my dr says I should have no pain from DISH because it's not a painful disease, and that any odd pain I do get he writes off and won't look into it more. I feel like I've been abandoned by the medical world, and that they think we're just out to get on disability or pain meds (neither of which I'm participating in - lord willing it will stay that way). NOONE with DISH/Forestier's ever wished for this, and they would trade places with anyone in a hot minute. I won't offer you platitudes, but I will tell you how I view the positive side of this horrific affliction.....I am more patient with others, I judge people less, I am a better listener, people feel like I'm more approachable, I relax more, I am finally letting others do for me after doing for others for years. No, there aren't any positive physical aspects that I can think of at all, but I will tell you, those of us who live with this are STRONG. We are fighters. Otherwise we'd all check out. And that's not an option. Some days it may feel like an option, but it's not. Use your mind, your gifts, your ears for listening, and whatever you can to feel like you still have purpose, even if you're in a wheelchair. Hang in there.....truly, I get it, and I'm sorry this is a tough day for you. THIS SUCKS!
robert54911 wsj333
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I found out about a year ago after a fall from a ladder and the X-ray showed I had Foresters disease in my spine it seems to be getting a little worse I have been reading other people's experience here and I'm quite worried about my future I wonder if Foresters disease always progresses to the points of some type of disability or pain. now it's just an inconvenience .is there anybody else there who's had a diagnosis and had not progressed or what should I actually look forward to. I am 66 now. With Foresters disease am I at much greater risk of injury if I'm in an accident or fall should I be seeing a neurologist to help assess how this is progressing currently I don't follow up with any doctors on my condition I am just worried and wonder if there's some hope that there's a large percentage of people whom it doesn't get worse thank you
gmc55 deborah46099
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wsj333 robert54911
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Robert, that is a very good question, one that I've been trying to find an answer to since I was diagnosed 1 1/2 yrs ago. To my knowledge there are only a few docs in the US who truly know anything about DISH. One of them is Dr. Rothschild in Indiana, PA, who I was lucky enough to get to since it's only 2 hrs from where I live. Even with all his knowledge, he would not give me a prognosis because everyone he has seen is so different. One person may progress quickly and end up in pain and in a wheelchair, while another may just have some discomfort and mobility limitations and never progress beyond that. Frustrating, I know, but I guess I came to the conclusion that if I end up in a wheelchair I'll deal with it then, but I'm not going to live like I'm in one now. I can't worry every day (easier said than done!) about what tomorrow holds. I'm hoping others will respond to your post and we can all get some idea if there are those out there who were diagnosed many years ago and are still doing ok.
deborah46099 gmc55
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Thanks for you and others reply's. I tried the radio frequency Ablation about a month ago and it made my hip facet joint way worse. But of course we sign off on that possibility before hand. The steroid shots that do work are building up in my body and giving me a moon face and fat pockets around my neck. So I am gonna cut back on them for a bit and just treck through with pain pills. I also looked int renerexx which is stem cell research, and glad they were honest enough to tell me there is no help there for this disease. They could have lied and ripped me off for several thousand dollars, as insurance doesn't pay for it. The bad part is I'm out of new ideas to look into. At least it's in the 70's here in the desert and not freezing like the rest of the country this winter. The cold makes the pain worse. Happy New year to everyone and keep us all posted as to anything new learned.
hurt-n Guest
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cj1215 hurt-n
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joe_50482 Guest
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hurt-n Guest
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