DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

Oh thank you all for your support. I appreciate your responses. We all need to stick together! There’s so much we could learn from each other.💕

I so agree! I was recently diagnosed with DISH myself and find info really lacking. I came to this spot hoping to find research studies. I may be interested in starting one myself.

Please check out dishdisease.support. It’s a website I started that has ACCURATE information, tips, and a map that you can pin yourself on. I do not ask for money. This was a project of love supported by my friends when I was diagnosed years ago.

I have had DISH for approximately 10 years now aged 63, very medications provide relief, best to concentrate on what we can do, rather than what we can't, exercise is your friend, with rest periods, walking light physical exertion, no upper body pulling towards no bending.

Hi, I have had DISH for approximately 10 years, whilst we can expect to loose a variable level of mobility, this is not a comprehensive debilitating disease....
Adjustments to life style are required, depending on age and cause of onset, in the younger generation, mostly a trauma induced issue.
Advanced years individuals with DISH, not quite the noticed mobility loss.
Exercise is you friend

Mitchell, you and I were about the same age when I found out I had DISH. However, I believe I had it for a lot longer than that. I think all mine was setting up in my late 20s early 30s . The first bone spurs I knew about were on the bottom and back of my feet. I don’t know whether or not it was a trauma induced situation for myself, or not, but no matter what, I am in this. I agree that there are things that we can do to help to a certain degree but not everybody has this disease the same way. There are some people who get it only in their spine. And others have it in all their other joints, which I am slowly, but surely figuring out that is the case with me. I am a bigger girl, and have always been a bigger girl , since I’ve been very little except for a short period of time in my mid 30s where I lost a lot of weight with diet and exercise. I don’t know whether that help me or did more damage to have to do that amount of exercise to lose that amount of weight. I was at the gym seven days a week for about five years with very few days off. So after all this time, I have not put back all the weight and I kept off over half which has been a great feat for me. Like I said, it was a significant amount of weight and people couldn’t believe what fortitude I had.
But with this disease, at times, I feel very helpless. Little by little I am being stripped of doing things that a have always done. I have not been able to play golf for the last three years and the other activities that I did including mowing my own lawn and tasks I used to find easy are now difficult. But I do challenge myself often to try to do things, and sometimes I pay for it frankly. But it’s the type of person I am and being a single person who owns two homes I have a lot that I need to do. So when I have my good days, and I do as much as I can. I do get joy out of doing things for myself.
As many of you know, I wish everybody well who has this disease or any other chronic diseases. But you, my fellow DISH patients, we, and only we know what this feels like. There are some physicians who are coming around to understanding, but they were told it wasn’t anything other than arthritis. Well, it’s more than just arthritis and people like myself have both osteoarthritis and this, maybe that’s why I feel as bad as I do. Anyway. Just do your best. 💕

Hi, interesting you mentioned your heels, was the same for me, had bone spurs in both heels, years ago whilst working in USA, I live in New Zealand now, only a few Months ago I accidentally found the DISH diagnosis whilst in Hospital with another injury.
My neck gives the most trouble headaches associated with muscles trying to support my neck.
My back is the most painful, a back support brace helps a lot, I use vert sparingly ordinary panadol when absolutely necessary for a while of relief.
Walking I find good relief and keep busy with anything.

Have a great week, stay in contact.
Thanks for replying

I was diagnosed with DISH 4 years ago as an incident al finding while the Dr. was looking for something else. I believe I've had it since my mid twenties though. I caught some horrible virus and it kicked my immune system into overdrive and it started attacking multiple systems. I was first misdiagnosed with ankylosing spondylitis because I had HLA B27 gene along with positive ANA blood markers. Then in my 40's I was told I had a negative ANA. I still do. But they told me I did not have HLA B27. I just had a test that says I do. Multiple very high inflammation markers and have had wonky red blood cell tests for years. All my doctors have just blown off until I crossed some magical line and all the suddenly there was an emergency. My iron plummeted quickly so I had iron infusions. I got better, but it is falling again and they never found a cause. I don't know if it's related to DISH or not. I so glad I found this group! I am astonished at how many doctors have never heard of DISH. Anyone else have these symptoms?

Hi. I am just reading your response and I am so sorry for everything that you were going through. I was wondering if you had spoken to a hematologist? I Only suggested it because they are the blood disorder experts. The blood can tell you a lot.

I was tested for just about everything to see if it was some type of autoimmune disease, etc. The only thing that came back was that my uric acid was elevated and my IgA too. I happened to be a little concerned, because I have worked in oncology. I spoke to one of the oncologists and he suggested a couple labs that my doctor may want to run. But the results came back and he said he wasn’t concerned at the moment, but that we probably should re-run one of the tests in about a year, which I did not follow up on yet. But since then I have come across that elevated uric acid levels are found often in DISH patients.
Elevated IgA can often be associated with people with stomach issues. Which I do tend to have a sensitive stomach. So I don’t know whether it’s that or there is something else that is brewing .
The body is so wonderfully complicated! Ugh! We are all doing our to get through this. Just make sure you stay on top of things. Thinking of you all.🙏