I am reaching out to those with DISH

My suggestion to you is to read as much as you can about this disease. When I was told I had it, it was like a lightbulb moment. Things that I have been feeling for a while, now made sense. But I also had parathyroid disease and had a parathyroid removed and some things kind of crossover with symptoms. But I do live with dish And I am in pain most of the time, but not as much pain as I could be without pain management. Aqua therapy has also been good and I unfortunately have not been able to do it in a few months due to family issue. But my plan is to get back to it soon because it’s helpful in many ways. Find yourself a good spine specialist and I have a rheumatologist who can’t help me with the medications he normally uses for his patients, but is very informed about the disease. If you have rheumatoid arthritis, then he will be helpful for you. I do not have rheumatoid arthritis. I have osteoarthritis and dish which is a non-inflammatory arthritis or so they say. Doesn’t seem to make sense when I tell you to take a non-steroidal anti-inflammatory medication to treat it. So I get a lot of pain management treatments. I get them in my lower and upper back and now in my shoulder area into my neck. But I do have pain in my other joints as well. I have bone spurs in my shoulders, spine the bottom and back of my feet. The bottom and back of my feet I have had since I was in my late 20s to early 30s . I do still work full-time. So pain management helps me do that with the steroid blocks, epidural’s, and radio frequency ablation’s. I wish you good luck finding people who really understand this disease, and pray that your pain becomes manageable.

I will tell you that some days are much more painful than others even with all the treatments. And some days it’s not so bad. I don’t know if we can figure out why. Somebody said to me maybe it’s the weather. Maybe it is, but I wish I knew for sure the things that trigger it.

Hi @blondie46, I would like to add my welcome to Connect along with @dishpain and others. I think you may have seen the 2011 discussion - Does anyone have DISH and/or OPLL?: https://connect.mayoclinic.org/discussion/does-anyone-have-dish-and-or-opll/ where there were only a few recent posts. There is 2018 discussion with current posts and active members that you might find helpful:

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

You sound like my twin as I have pretty much the same stuff you have, but I'm throwing fibromyalgia in also for me. I do have a good spin doctor and he treats me with injection as well along with pain medication. I have read as much as I can get my hands on, but I wanted to know a little more from the people who have been living with it.
Has your DIME gotten worse over the years or is it your arthritis that gets progressively worse?
I have been living with all of this for many years, but I didn't know I had DIME until I was diagnosed recently. Like you, a light bulb went off when I read all the symptoms. I was so happy to put a name to all the things I have felt for so long.
Thank you for replying to me. Karen

Thank you for replying to my post. I don't think it has anything to do with the weather, it's just another disease we are lucky enough to live with. I just wish the diseases would quit coming!

Like you I know, it’s good to know that others know what you’re talking about and feeling. I just wanted to clarify that I have not been diagnosed with DIME. Only DISH & osteoarthritis. I also have heart issues that may have been affected by dish but also something that I was born with. Dish is a connective tissue disorder and I have been told I have a connective tissue disorder. As to whether dish is the connective tissue disorder that caused some of my heart issues, I don’t know. I am so sorry for you that you have DIME as well and fibromyalgia. You have a lot going on.
I’m glad you are reading things but make sure that they are from reputable resources. Smaller studies are interesting but not necessarily of a lot of value. I don’t know if you’ve come across people who don’t even know about dish. I have even gone to orthopedics PA and he had no idea what I was talking about. I guess in PA/ medical school they don’t talk about it much or not at all. If they do talk about it, then they say it’s nothing. And that may be true for some people, but for those of us who suffer with it, it is something! I go to pain management, and they have given me the name of another dish patient with that person’s permission. I have not had a chance to call him yet, but I am looking forward to seeing if he can give me any other information that I don’t already have.
Good luck to you and to any of the others on this site, who are dealing with us.

You're right, no one has heard of DISH, but I am lucky that my spin doctor does. I have it in my neck and have been trouble with my throat and with swallowing again, which is so scary. I go in for new stats in a coup!e of days.

Thanks for talking with me and good luck with your diseases as well.

I was just diagnosed with Dish disease. I was told to take Tylenol, use heat and steroid injections. I had steroid injections in my spine but really didn’t help.

My sister has DISH. She was diagnosed when she stayed with me for a year. That was in 2011. She was 54 that year. I took her to an orthopedic Dr. who I knew was very good because of her neck issues. He asked if he could take an X-ray of her neck and she said yes. I was sitting in the room when he said,"I know what your problem is." You have DISH. The other term is Forestier disease. He said that all the discs in her neck but one was fused. Because her neck is fused she is not able to be put under anesthesia. Before 2011 I noticed the way she held her head and she had what I would call a turtle neck look. She told me recently how stiff she is.

How is your sister doing now?