DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

Sure! The first time I heard about DISH was about 10 years ago when I was having severe shoulder pain. My family doctor sent me to an orthopedic doctor because he said I had some of the largest bone spurs he had ever seen. The orthopedic doctor was also somewhat puzzled, but said he faintly remembered hearing about something called DISH, and he thought I should see a rheumatologist. I had to travel to a town about 75 miles away to see the only rheumatologist he had heard about. When I saw him, he confirmed it was DISH because an x-ray of my spine showed the classic "candle dripping" look that created a solid thin line about an inch from my spine all the way down my back. He said there was nothing to be done for DISH except to try to stay active to avoid stiffening of the joints and back, and take pain medicine when necessary. He tried 10 or so pain meds without finding anything that worked very well. He said surgery to remove the bone spurs wasn't a realistic option because they would simply grow back. Over the next 6 or 7 years the pain migrated through many of my joints - spurs in my ankle caused a tear in my achilles tendon, I had a total knee replacement in which the bone eventually grew over much of the replacement as best I recall from seeing an x-ray of the knee replacement years later, I had severe pain in my hip joints and my shoulder joints. The pain has somewhat waxed and waned, and people don't understand why sometimes I can move freely while other times I am quite limited - nor do I understand it.
I have only met one other person who told me they were diagnosed with DISH, but their experience was very different from mine in that theirs affected mainly their spine, resulting in several back surgeries. My back has some spurs and random other problems, but my other joints have been my biggest problem.
I haven't really researched DISH since my original diagnosis years ago. When i tell doctors I have DISH, they generally ignore it. I would be very interested in hearing from people with the same diagnosis about their experience with it and any new research that has been done. I have never heard of any association for people with DISH or support groups because apparently it isn't very common and in fact it is just a form of osteoarthritis.

I too have been diagnosed with DISH fairly recently. After reading several of the posts on this site, I am feeling vindicated but also saddened about this disease. I agree that so many have never even heard of it and I for one as a healthcare professional had never heard of it either until I was diagnosed with it and started reading. I have many of the aches and pains and have complained about my joints for years. I would say it’s probably close to 25 years that I knew of heel spurs on the bottom of both heels and on the back of both heels. So I was in my mid to late 20’s. I have had other issues in my body as well including heart surgery which I now am wondering if DISH or my hyper parathyroidism, post one parathyroid removed, may have played a part in my heart issues. I am being treated for my back with injections and now going to start physical therapy for bilateral gluteal tendon tears. When you tell people about it, including healthcare professionals, or the general public, they look at you almost as if they don’t believe you or that you’re crazy. It’s just that people don’t know. I wish there was more recognition for this disease. So I continue to work and try to stay as active as possible. It’s difficult for me because I always found myself being very busy but now very painful to do some of the simplest things I used to do without thinking of it. I thank all of you for your posts!

I have been diagnosed with PMR and struggling with that when I was finally DX. 2 years ago, they did an MRI and did not find it but found it on an Xray two months ago. The hoarseness frequently and difficulty with swallowing occasionally are troublesome to me. With no information about this I started taking CQ10 again for my heart per my cardiologist. I don't know what else to do.
I do not know how fast these progresses.

It was not me, as this is the first time I am posting about my DISH dx. I was just DX when I went in with severe pain in my neck, they took images and found it.

I actually just had to read up a little bit on your condition. I am so sorry that you are going through this. It’s hard when we get these rare diseases. It appears that yours affects the muscles. It’s hard to be in pain no matter whether it’s affecting muscles or bones or other tissues surrounding them. I wish you luck on finding out more about your condition. Stick to reputable sites. I don’t know whether or not physical therapy may be something that would be helpful for you. Not knowing enough about your condition it’s hard to know for sure. I wish you the best!

Thank you for your note of encouragement. Yes I got a hot tub so I could loosen up my tight muscles, am doing therapy which includes ultrasound therapy. I still am having trouble with the cough and hoarseness. I may end up at Mayo clinic if they still do (since covid) the appointments where multiple disciplines meet with you after reviewing your chart to see what they can do for you.

Is anyone currently being treated for DISH at Mayo JAX? Thx.

@tallyteresa Did you find anyone being treated at JAX? Are you being treated there?

I have a neurosurgeon there who removed 3 large osteophytes while fusing 2 discs in my cervical spine. These had pretty much taken my voice and ability to swallow. I have many more throughout my spine, but he won't remove them unless they are really causing problems as they grow back most of the time.