DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

Posted by ardithann @ardithann, Feb 10, 2018

I would like to connect with someone with DISH disease. I saw one post about someone recently diagnosed with this, but can't find it again.

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@jcain

I think I have it in my toes. I cannot bend my toes down.

I wonder if those who have DISH can somewhat be corelated with covid vaccines? I have had 5 vaccinations for covid.

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I have not heard that it is correlated at all with Covid vaccines. I had the initial 2 Moderna plus 1 .

I have trouble bending my toes as well. But I also just received blood work back. I asked the doctor to measure my uric acid level. It is elevated. I have read it in the past looking at several articles about dish, that some patients have elevated uric acid levels. They don’t believe that one causes the other, but that they have common risk factors between the two diseases. So I’m not sure if the bending of the toes is because of a dish or is it because of the elevated uric acid levels. If I had to guess, it would be that the dish is causing it.

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@jcain

I think I have it in my toes. I cannot bend my toes down.

I wonder if those who have DISH can somewhat be corelated with covid vaccines? I have had 5 vaccinations for covid.

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It may affect different DISH sufferers differently, as it asks your immune system to make antibodies I have DISH and 5 Covid vax and have not noticed a difference for me. I don't doubt at all that others may experience their reactions in a different or more intense way.

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@dishpain

Do you have an option of another pain clinic somewhere near you? Be vigilant. We have to be our own advocate. I’m in the medical field and it’s in me to want to find out more. Do your best to continue to educate yourself and educate physicians about this disease. Everybody with this disease has a different areas where it affects them. For some of us it is throughout the body. For others it’s just in their back. I don’t know if you have gone back and read that I have done aqua therapy and water. Therapy is great if you have that option. If you live in a warmer climate, it can even be in a lake or pool. I don’t take any narcotics and very rarely take ibuprofen. I have an issue taking ibuprofen and it causes swelling with me. But the NSAIDs do help with some relief. But I do take Tylenol twice a day routinely, and may throw in another dose if needed. My suggestion is that you have to try different things and figure out what works best for you. But keep moving as much as you can. 🙏

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The PA told me that Walmart sells TENS units for about $29. I have not bought one yet. The PA said to start a low level of stimulation then work up.

I do not use a TENS unit but do simple exercises. It does not eliminate my back pain but it eases it.

You could probably google exercises for your back pain area.

I pray for all who suffer from DISH disease. I offer my pain up for the sufferers of DISH That all find some type of relief.

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@JustinMcClanahan

Hello @ardithann, welcome to Connect. I had never heard of DISH (diffuse idiopathic skeletal hyperostosis) disease so I did my own research and was able to find this information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/diffuse-idiopathic-skeletal-hyperostosis/symptoms-causes/syc-20371661. I see that you posted to a member that posted about DISH from 2012, https://connect.mayoclinic.org/discussion/anyone-out-there-diagnosed-with-dish/. Is that the post you were wondering about?

While we wait for other members to join in, if you are comfortable, would you mind sharing a bit more about your experience with DISH?

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I have never heard of DISH either until Wednesday (23rd) afternoon. That's when my primary doctor diagnosed me with it. He also said my back was riddled with arthritis as well. And he said there was no known cure for this. So this is why I've been having constant, every day headaches!
I've gone from being able to fully bend and twist my neck and back to not being able to do much of anything with it anymore. Turning my neck while driving is almost impossible, and don't even ask me to wipe myself dry between my legs after peeing, because I can't do it anymore. I just can't reach because I'm too stiff.

So now I have to go see a rheumatologist in Sioux Falls, SD, in October, because that's the soonest I can get in. In the meantime, I just take one Aleve pain pill for all-day, and two Advil liquigels right away if I need to, but they don't always help. I try to deal with the costant pain, but it's hard to do. I just wish I weren't in so much pain...

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@imzadi1971

I have never heard of DISH either until Wednesday (23rd) afternoon. That's when my primary doctor diagnosed me with it. He also said my back was riddled with arthritis as well. And he said there was no known cure for this. So this is why I've been having constant, every day headaches!
I've gone from being able to fully bend and twist my neck and back to not being able to do much of anything with it anymore. Turning my neck while driving is almost impossible, and don't even ask me to wipe myself dry between my legs after peeing, because I can't do it anymore. I just can't reach because I'm too stiff.

So now I have to go see a rheumatologist in Sioux Falls, SD, in October, because that's the soonest I can get in. In the meantime, I just take one Aleve pain pill for all-day, and two Advil liquigels right away if I need to, but they don't always help. I try to deal with the costant pain, but it's hard to do. I just wish I weren't in so much pain...

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Well, I hope that your rheumatologist connects you with pain management like my rheumatologist did. Unfortunately, there are no medication’s that the rheumatologist could give me because I do not have an autoimmune conditions which his meds would work for. Hopefully he will make sure that you already have or will check via bloodwork to eliminate any auto immune issues. But pain management has been able to help me. Doesn’t completely eliminate pain, but it does help. I can’t take the ibuprofen, or naproxen very often because I start to take on extra fluid. Which is not good for me. Most people it does not bother, so I am in a very small minority For that happening.
I do hope that you find some answers that will help what you are going through. It is probably going to be a combination of things, including medication’s, exercise, physical therapy, and I also do massage therapy.. I wish you well with your new diagnosis. 🙏

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Simple exercise. Lay flat on your back. I know it is a task to lay on the floor so I do this in bed. Raise your knees up feet flat on the floor/bed. Then take your your right ankle and rest it on top of your left knee. Count for 60 seconds then take you left ankle and rest it on top of your your right knee count for 60 secs. Do this alternating routine three times. If the hamstrings cramp on the leg flat on bed/floor just slide that foot out a little.
Just let gravity bring the leg on top lower down. This will ease the pain.I use this in combinations of different exercises. Some days I have no back pain.

Bless all of you out there suffering from DISH.

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I was told I have Dish disease. Only treatment is Tylenol, heat, steroid injections. Also surgery if it affects swallowing.

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@barscr2

I was told I have Dish disease. Only treatment is Tylenol, heat, steroid injections. Also surgery if it affects swallowing.

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@barscr2 Welcome to Connect. I found a few other discussions where you can connect with other patients talking about DISH or Forestier's Disease.

Spine Health - "DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's"
https://connect.mayoclinic.org/discussion/dish-disese-diffuse-ideopathic-skeletal-hypertrophy-or-foresters/

Spine Health - "I am reaching out to those with DISHd"
https://connect.mayoclinic.org/discussion/i-am-reaching-out-to-those-with-dishd/

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Hello @barscr2, I'd like to also add my welcome to @jenniferhunter's. As she mentioned, I moved your discussion and combined it with an existing discussion on DISH titled: "DISH (difuse idiopathic skeletal hypertrophy or foresters), https://connect.mayoclinic.org/discussion/dish-disese-diffuse-ideopathic-skeletal-hypertrophy-or-foresters/ so you could meet some of the other members discussing this diagnosis.

@imzadi1971, @dishpain and @farmgrrl57 all recently discussed their DISH diagnosis as well.

@barscr2, how are you doing with your recent diagnosis? If you are comfortable sharing, are you experiencing any symptoms of your recent diagnosis of DISH?

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I was just diagnosed with Dish disease.

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