DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

Thank you.

I was diagnosed last week with DISH, age 61, non-smoker, 138 lbs. For over fifteen years, I have had stiffness in the hips, especially after 50 min. of sitting/commuting to work. And more recently, after a long walk.
- Eight years a ago, I retired early and started an exercise program at the local fitness club. For the last 8 yrs. I've had almost zero alcohol. I lost close to 30 pounds and put on 10 lbs. of muscle. Two years ago, I was diagnosed with sleep apnea. The treatment was a 100% beneficial.
- For a while I thought I was getting bursitis on the greater trochanters, so I stopped some leg exercises. The "exterior" hip pain was reduced to occasional flair ups.
- Then, last July, doing pull-ups, I hurt my back, on the spine, between the shoulder blades, where I had displaced a vertebra 20 years previously.
- I tapered off the exercises over the next 6 months. Since mid-Jan, I have only been walking, waiting for my back to sort itself out. It has NOT. Additionally, I have plantar fasciitis, for over two years, in one foot.
- My pains: either from stretching routines for back mobility or after lifting objects, (gardening and moving heavy pots) I get a "gripping" pain along the sides of the spine middle of the back, and around the vertebra between the shoulder blades. My exterior hips, the greater trochanters, are sore almost constantly.
- Recently, for about a month, my hip flexor tendons were very stiff and painful, in the evenings. That has mostly disappeared.
- I read that isotretinoin, a vitamin A derivative for treating acne, may be a cause for DISH. I've been taking 8mg of it every 2 days for about 15 years. The dermatologist says 8mg every 2 days is like a homeopathic dose.
- Suggestions on the isotretinoin, anyone?
James

I’m sorry to hear of your diagnosis. The reason I say I’m sorry is because I also am a DISH patient. So many of your pain areas are pain areas of mine. I was diagnosed several years ago at the age of 52. Up till then I was pretty active and playing golf was one of my many activities that I have loved & lost.
I have done physical therapy and aqua therapy and have learned some exercises to help but some days are worse than others. You may find out that some days that you are more active can make things worse.
But I would recommend that you keep moving as much as possible. Unfortunately, I’ve had a lot of stuff going on in my life lately and have not been able to get to the Y. Water exercises are the easiest on the joints. Almost every joint I have hurts. The spine specialist explain to me that, this disease has a lot of tendinopathy. So it’s a disease that is a connective tissue disease so ligaments and tendons tend to be affected and bones spurs can form in any of the joints.
I also have stenosis and bulging disc in my lower back. Some of those kind of things can come from things other than DISH.
I truly believe that this disease also affected my aorta. I had heart surgery at 50 and part of it is something I was born with, and the other I believe may have been affected by DISH. My ascending aorta had to be grafted. A portion was replaced. My cardiac surgeon told me that I had a connective tissue disorder . I didn’t learn of the DISH until after the surgery and then it made sense. I am in the medical field and I have read up on this disease extensively. The two physicians that I have spoke with that have knowledge of this disease are the spine specialist, and the rheumatologist. Unfortunately, the rheumatologist cannot help me with the medication‘s that he prescribes Normally, but at least has knowledge of the disease. If you can take nonsteroidal anti-inflammatory medication’s, that will be helpful.
Many other physicians were told that this is not a disease to be concerned about. And with some people who get it, it’s not that bothersome. But for those of us who have it more severely, it can be debilitating at times. I pretty much live in pain every day. But like I said, the name of the game is to keep moving. I’m hoping to retire at 60 to 62. But I will have to keep moving after that.
Do yourself a favor and find yourself a physician that will listen. A spine specialist and or a rheumatologist have been helpful for me. Physical therapy specifically aqua therapy may be helpful. I wish you well.

I was just diagnosed, released from the ER and my CT of my cervical/thoracic areas all had the comment “dish”. I have seen a handful of docs in the past years—never heard of this but it all makes sense now. I mean I can relate to every comment. I told my wife a few weeks ago, “why can’t I get into a car normally?” Well now I know-DISH. Mid back pain you could draw a line across, those crazy mid shoulder blade cramps.

I’m glad you came to the site and go back and take a look at many of the posts about this disease. Praying for you.

Thank you @dishpain Not too much information around but Mayo nailed it! Excellent forum. I had my second severe “flare” at Walmart. Headache, neck, jaw, shoulder tightness, both arms numb and chills/goose flesh. Left my cart and went home to lay on a hot pad. Worked with ibuprofen, lyrics, tizanidine. I have a question for you: im the only one that noted this on my films CT/MRI. I spoke with the resident in detail (Excellent) but DISH wasn’t even mentioned. The reports came out during the night which showed several cervical and thoracic vertebrae with anterior ossification. I work IT from home and this really beats the tar out of me.

Can I ask your latest adventures? What meds work for you? Should I ask for tramadol?

I go to pain management for steroid & local anesthetic injections in my spine & shoulders.
I do have confirmation in thoracic spine of DISH & have spurs in shoulders & bottom & back of feet. Other joints are painful including toes. I also have stenosis & bulging disc in lumbar spine .
I work full time in medical field. My duties at work have been amended some due to many issues including DISH amongst other issues but DISH is causing much pain.
Aqua therapy is good idea & doing exercises in water easier than in land.
I can’t take Motrin often & reserve for more severe pain & narcotics make me sick. Not much relief with skeletal muscle relaxants. I take 1000mg of Tylenol morning & night. I also take aspirin 325mg a day as part of my cardiac regimen.

Keep moving if you can. Light walking or time in pool, etc is good. You will notice that long time in chair you feel more achy. You said you do IT from home . Get up every 30 min & walk around the house, inside or out. I move frequently most of time . I find it better for me.

Best of luck. I was told by rheumatologist that Motrin or whatever other NSAID you like helps greatly. I Aldi get massages frequently. Helps too!

Also get massages .

Glad I found this group !!!! FEEL COMPLETELY ALONE WITH THIS OUT IN THE BOONIES because the local doctor implied I'm a hypochondriac or just trying to get pain medicine which I'm not I have never gotten any nor ask for any and the large city research Dr s said definitely DISH and the doctor in the small City said sae zero nada none NO evidence of DISH .....and they're looking at the SAME spine n ribs n back n the same TRABECULAR etc bone scans n report stating bridging a
Osteophytes and "DISH" , the same DEXA bone scans from several years, and the same recent thorasic x-rays, the same mri's of the foot with the Achilles turning to Bone, the same X-rays of the spine and the ribs and the lumbar, and the same head to toe MRIs but rheumatologist says no DISH and the other rheumatology research clinic says DISH ....the research clinic says definitely dish your back is "encased in a column" and it's all over your body hands feet ribs legs but the local rheumatologist says No signs of it AT ALL.?????????? Makes me wonder what's wrong with the medical profession ... So much discrepancy n so much shaming of active athletic healthy lifestyle patient..... and what the local agenda is to rule it out when the experts say definitely DISH. ???????????????????