DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

I just got diagnosed and would also like to find out about it.

Dish disease

Hi. I’m very sorry for your diagnosis and I don’t know how you’re feeling at this point. Early on in the disease most people don’t even know they have it but when it progresses, it’s not good. But there are some things that can certainly help manage it. I would go back and read the posts here Of people who are going through this and we are all at different stages and we have it affect us all differently. When you go to read about it, make sure that you’re going to very reputable sites, including the large medical clinics. Many of us use different treatments to help. I use Massage and pain management and some medication, but I have to be careful with what I take for medication. I’m just pretty sensitive. I think the name of the game is also to keep moving If you can. My best wishes & prayers to you. 🙏

Thank you for your kind words. So far I’m in no pain which is kind of throwing the Doctors off. My only problem is with my gait right now. And I can still drive and function. If my tumor doesn’t grow I’m inclined to leave well enough alone. I have been very blessed in life with a loving husband and family. I try to maintain a positive attitude. Thank you for your prayers and good thoughts!!

I am glad that you are not in pain. And there are tools. You can use to help you with your gate. I’m sure physical therapy can help with that as well. I’m glad that you have a loving husband and family. That means you’re taking care of. Unfortunately, I never married. I wanted to and I wanted to have children, but that didn’t happen either. So I have been blessed with friends who help me and occasionally siblings can help me out when I need a ride somewhere because I can’t drive after a procedure. May God continue to bless you !

Thanks for your reply. We certainly don’t know what the Lord has planned for us. I have had one medical thing after another but I try to stay positive. I’m glad you have good friends who help. I will be 75 and still very active but if I die tomorrow I’ve had a very interesting life. Blessings to you and best wishes for your health. Katy

Thank you, Katy. You’re right we don’t know what our path will be. Like you, I am a medical mess. I’ve had many surgeries. But none related to DISH that I know of for sure. We just have to do our best. Stay well!🙏

These posts look pretty old, but i am going to join in the discussion with the idea there is always someone new joing up (like me).

History of back problems for almost 20 years before i was diagnosed with DISH. Before that it was just called degenerative disc disease and i was told "everyone got that". Well, 4 back surgeries (2 spinal fusions within 2 years) and a neck surgery. Looking at another spinal fusion (which will make it S1-L2) sometime this year. It has been quite an education. The XRAYs show growths on all my vertebrae fusing with the vertebrae above and below them. Arthritis simply everywhere. Knee surgery. Shoulder surgery. Ankle issues. It is slow but it never goes away.

The worst part is the lack of sleep (due to pain). Which makes it harder to power through the day. I have some exercises i learned in PT. i try to do some walking. Best results from just adjusting my routine, Investing in DME - handrails for the toilet and bath, a bench for the bath, grabber tools. JUst finding ways to make every day tasks easier and safer. There are some medications, but i hate taking a handful of pills 3 times a day.

There is also the diabetes and sleep apena. And last year a diagnosis of Parkinson's. Makes it hard to enjoy my hobbies, but giving up is the worst thing you can do. Find strength in things you love. In friends and family. Wait for a cure.

@pak5000 I wanted to welcome you to Connect. You have a great outlook on finding strength and new ways to do things. I'm not a DISH patient, and I wanted you to know your input is valued. It will help someone even if they don't join Connect and start posting because there are many more people reading that you never see.

How soon are you being scheduled for further surgery?

Pak I’m so sorry for what you’re going through. I was diagnosed with DISH A few years back, but I believe I’ve had it for what might be 27 years that I can think of. Please go back through and read some of the posts And you will see that different people have had some different experiences. Don’t be afraid to ask questions of your providers. And look to see if you can find providers that Have a little bit more knowledge About this disease and in normally that might be a rheumatologist or spine specialist in my experience. I wish you the best. You could always come back and ask a question And those of us who have had it for a while, can help you. 🙏