Living with Forestier's disease
Posted , 86 users are following.
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
Mickeyfin Guest
Posted
I was struck by the number of patients here who are being blown off by the docs. It is critical to go to a major medical school also known as a center of excellence. The docs work in teams, so my husband will have 3 surgeons. The disease is progressive and he has evidence of disease in the lumbar region. We have to deal with this for the rest of his life. We selected USC in Los Angeles, they have an excellent spinal surgery group. We wanted a surgeon familiar with the disease who had done this before. They are going to approach from the throat to access the vertebrae with the least risk to his spinal cord. They expect a 4 hour surgery, hospitalization for 3 days and physical therapy right away. A 3 month recovery, he will have fused vertebrae but not stooped anymore and regaining of neurological function. I am a pharmacist, so familiar with drug treatment.
This is very stressful, as we live in a rural area without much medical specialization. We just have each other, no other family around. I am dedicated to make sure my husband gets the best care, but we know there is no cure at this time.
Apparently there is much variation in this disease, so many people never need surgery. Be sure you get a good workup at a major institution. You get the best trained doctors that way.
good luck to all.
vickie92929 Guest
Posted
I'm in the same situation in so much pain and can hardly move and it feels like no one knows what to do. I cannot carry on like this cause it's taking my life away from me.
I wondered if anyone knows of a consultant in west sussex (uk) that I can get a private appointment with.
Sending lots of hugs
kevin_44673 vickie92929
Posted
I doubt that you will have much luck sadly. It's evident that our NHS care little to not at all on helping sufferers of this crippling, painful condition. If only we could project how we felt for 5 minutes, I'm sure that this would get the medical profession in gear. You can't see it looking at a sufferer as we mostly look healthy on the outside but boy does it hurt on the inside! If you get any positive response then please let readers know. In the meantime, keep taking the pain meds and try keep as mobile as possible because inactivity definitely makes things worse!
stevesmith vickie92929
Posted
The pain is unbearable,you've probably been told shouldn't be any pain I've been through same see my Web page D.I.S.H Steves perspective
wsj333 stevesmith
Posted
Why, oh why, are we all told that there is no pain with DISH? I'm honestly trying to figure this out. It makes no sense to me. Just from a logical perspective, when you have bine jutting out where it shouldn't be, doesn't it stand to reason that it would be pushing on things (tendons, ligaments, other bones, nerves) and causing pain? It seems so obvious, and yet my rheumatologist is adamant that DISH does not cause pain. Easy for him to say. How can we educate the people who are treating us?
wsj333
Posted
Bone, not bine. Darn predictive texting. 😀
gmc55 Guest
Posted
I was first diagnosed with A.S. 16 years ago but soon found out I had DISH. I am now 55, trying to manage the pain. The constant pain is sometimes difficult to take. They say its an old persons problem not true. I showed signs of it at 32. It is tough on the family they can't understand you looking so healthy on the outside and feeling so sick on the inside.
gmc55 Guest
Posted
I have been dealing with dish for 20 years. It is tough on the family they do't understand why you look so normal on the outside but feel so sick on the inside.
joan73929 Guest
Posted
wsj333 joan73929
Posted
Joan, I do have fibromyalgia along with DISH, and I'm finding that many people with DISH have fibromyalgia. Dr. Rothschild (in Indiana, PA), is extremely familiar with DISH disease and has written papers on it - he agrees that many people have both diseases but they don't know why.
joan73929 Guest
Posted
I pray you have found a Dr who has found a way to give you relief. Just diagnosed myself with DISH that is very advanced. I've had Fibromyalgiafor 21 years. God bless
tkfogelson01 Guest
Posted
wsj333 tkfogelson01
Posted
So true. Sorry you've had to join the ranks with us, but let me tell you (and I'm not trying to pacify you), people who have DISH disease are TRUE survivors. Few doctors know anything, and yet we have been told by those same doctors that there is no pain with DISH. REALLY?! Not so. Bone growth and loss of mobility DO equal pain. Be your own advocate. Use this forum and any others you find to connect with people who have DISH. THAT is where you will find any answers that are available, and from people who actually know. Find a Rheumatologist who isn't afraid to say "I don't know", treat you with dignity, and will listen when you give them information on what YOU know. Stretch daily, stay as mobile as you can, learn good relaxation techniques, create and find joy wherever you can. YOU CAN DO THIS! It's not easy, but you can do it. And remember, although everyone with DISH disease can relate to each other in one way (the fact that we all have a rare disease), everyone's experience with DISH is different. Some people only ever have mild symptoms, for others it is debilitating. Don't worry about what the future could hold for you related to symptoms....it may never happen. And if it does you can deal with it then. That should apply to most things in life.
Glad you found us, and know that we're here for you!
bob40242 wsj333
Posted
Hi
I've had dish for roughly twenty years now and have the problems over most of my joints knees hips elbows shoulders and whole spine at present biggest problem apart from the severe pain is a bone spur pressing on the spinal sheath at c8 which causes numbness of hands and arms.
My original consultant was switched on as he diagnosed me instantly from an x-ray and said I would have pain for the rest of my life.since then I have had a succession of medical staff as much use as a chocolate teapot if you change doctors you have to explain everything again they blame everything on dish regardless of sign or symptoms I am now on quite a collection of pain meds biggest of which is oxycodone to which I can take up to 280mgs in 24hrs along with tegretol lyrica and duloxetine . unfortunately it's impossible for me to keep mobile as I can only walk very short distances and due to shoulder pain can't make my wheelchair move without assistance. I feel sorry for anyone with this horrible disease and thanks for letting me have this rant
vickie92929 Guest
Posted
Thank you and it is hard when Drs arc don't understand how much pain I can be in. Your words was touching and feel you are so right.