DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

I went to the Spine Clinic at Mayo Clinic Rochester,MN. This was the only department that knew what was wrong with me and diagnosed me with DISH. I also have eye problems but have always blamed it Type 2 Diabetes.
Do try and get an appointment in Rochester. Keep trying!

I'm 34 I was hit by a car at 17. I have a two level fusion in my lumbar spine. I was recently diagnosed with dish disease. The doctors had to look it up. It's painful to speak talk and even eat. The only thing that helps is injections and pain meds. They are decreasing my injections because of insurance and decreasing my meds because of the government. The pain gets so bad I'm tempted to end it all. The only reason I don't is because of my meds and injections. Now I'm concerned. They think I have an auto immune disease as well.

Steroid injections and pain meds. It took a while to find a balance

This is the largest Support Group for DISH sufferers in the world with over 2151 members the world over go to Face Book and type in
DISH SUPPORT and it will take you to the site.
There is also a Research Site for DISH which has extensive literature and studies on Face Book and a link is available on the Govt Web Site of Rare Diseases Info even though DISH is not considered a rare disease.
DISH RESEARCH
Being a new member here I was not allowed to post the link. I hope this helps!

I have recently been diagnosed with DISH. I am a 56 year old male. I have had coccyxdynia for 3 years and investigations highlighted a number of enthesisopathy on my pelvis. Further x rays showed lipping on the vertabrae. I'm still wondering whether this could be anklosing spondilitis? I now have lots of cracking in my neck and thoractic spine along with pain. I'm taking NSAIDS but they don't seem to be doing much? Feeling pretty low, 6 months ago i was a normal middle aged guy, now i feel i have been dealt a death sentence!

I read an article from an X-ray school that explained how they can tell the difference between the two. They even said in rare cases you can have both at the same time and they can tell them apart. Do you still have the coccyxdynia? "now i feel i have been dealt a death sentence!" The worst thing it is a slow painful death for some! I know because I have been suffering almost 20 years (I am 70 now). There are good days and bad days. Keep in mind attitude makes a big difference. I remind myself often, that there are many people in worse shape than me.

Hi @ardithann
My name is Brian and I have known I have DISH for 23 yrs now. I was lucky with my diagnosis. It was caught by my Chiropractor, who happened to work with some surgeons and showed them my X-Rays. I was 43 at that time and had been having back pain that had been getting worse and worse.
Then the fun started. Doctors who needed to have the word DISH explained to them, along with the utterly confused nurses, and horrors upon horrors, the physical therapists who had no fucking clue, so that the day after a visit to one I was left stiff as a board. And hey, who doesn't remember their first visit to the "Specialist" thinking, "Cool, maybe this guy's got something for me" and the Rheumatologist says the dreaded words "I'm sorry but there's no real cure or treatment for this". Well that sucks. To make matters worse I am a recovering alcoholic and addict so I would not take pain meds for fear of getting addicted again.
So listen, I have.to stop now. I'm writing this on a pad and I don't know how to save what I've written so far and this site won't let me save a draft, so I can't . I've got a lot more to share and there are some ups and downs, but there are solutions to dealing DISH that are mentioned in many of these texts. I'll tell you about mine soon in my next message
Peace

So glad I found this site. I was just diagnosed with DISH/Forestier’s. I am desperate for information. I have had symptoms for 5 years becoming more severe in last 4 months.

Hello Ty, I am sorry for your diagnoses. It is very hard to get help because most docs are clueless, this is the most ignored common disease there is. There is very little research going on. Ask me anything, I will help if I can.

I have many questions. One being, How fast is the progression? I’m 45 & had pain for 5 years now.