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DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's
Spine Health | Last Active: May 28 5:16am | Replies (207)Comment receiving replies
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
Replies to "I was diagnosed last week with DISH, age 61, non-smoker, 138 lbs. For over fifteen years,..."
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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.