Diffuse Idiopathic Skeletal Hyperostosis

Question:

What is your biggest challenge with living with DISH? Submit Your Comment

Comment from: RowletteTD, 45-54 Female (Patient) Published: July 01

I was officially diagnosed with DISH (diffuse idiopathic skeletal hyperostosis) 10 years ago but in hindsight have been suffering long before that, undiagnosed. It has progressively gotten worse. I've tried everything, therapy, heat, hot tubs, pain killers that only make it tolerable, exercise before the pain got so bad I don’t want to move, and today I got a caudal epidural and am so hopeful it eases it some because at this point I want to get a wheel chair! I'm on disability for it but of course have to work a part time job.

Comment from: KL, 65-74 Female (Patient) Published: December 05

I am a 68 year old female with 9 advanced large spurs. I was diagnosed with DISH (diffuse idiopathic skeletal hyperostosis) this past June. The thoracic pain is horrible and I have been told to learn to manage the pain. There is no relief and the doctors don’t know enough about it. It is so upsetting to live like this. I spend a lot of time crying as the pain is exhausting. I don’t understand why they haven’t come up with some kind of solution for this horrible disease. I feel for anyone else who has this.

Comment from: Dave, 55-64 Male (Patient) Published: October 30

DISH (diffuse idiopathic skeletal hyperostosis) severely limits the range of motion in my neck and my lower back. I cannot reach past mid-calf, so picking things up off the floor is impossible. I use a mechanical claw to pick things up, and a rope slide device to put socks on. Shoes require being tied in advance and a three foot shoehorn. I have tingling in my arms and periodic difficulty swallowing. However, I consider fortunate that my pain is light. I find walking helps with general fitness and do 4 to 5 miles daily.

Comment from: WenSue, 45-54 Female (Patient) Published: September 06

While pain is a challenge living with DISH (diffuse idiopathic skeletal hyperostosis), the biggest challenge I have found is trying to find a doctor who does not dismiss you. The pain in my neck is severe, I have trouble swallowing and choking when I eat, numbness and tingling in my hands now, limited mobility overall in my spine (which decreases more each month). This disease is isolating because the doctors do not want to help since they know so little about it. Never thought my life would come to this.

Comment from: Newt, 35-44 Male (Patient) Published: July 19

The biggest issues for me, a 36 year old male, are pain, stiffness, bone spurs and limited mobility in the affected area. The hardest part is doctors say DISH (diffuse idiopathic skeletal hyperostosis) doesn’t cause pain.

Comment from: RDM79, 35-44 Female (Patient) Published: March 24

I am 41 years old and finally had my uncle, a retired orthopedic surgeon, look at my 3-year-old MRI that 3 doctors said showed mild spinal stenosis, bulging discs, and scoliosis in T3 to T9. Well, those are present, but none noticed I had DISH (diffuse idiopathic skeletal hyperostosis), except for my uncle. I even looked at my MRI at home, I could see a strange white mass in my thoracic region. I've had pain a week after my 35th birthday, it was a sudden horrible pain 24/7, that has not gone away since. Why is there no treatment!

Comment from: Robert, 65-74 (Patient) Published: February 07

I have had DISH (diffuse idiopathic skeletal hyperostosis) of the upper back for almost 5 years. It was so painful that I couldn't ride in a car. I have been receiving chiropractic care, ART (advanced response technique) since 12/2014. It has been wonderful. Yesterday I woke up with bone spurs in my right ankle and it hurts unbelievably. I'm calling them this morning to see if they can help and I can get some relief.

Comment from: Di, 65-74 Female (Patient) Published: November 05

I wonder if anyone has had a hip replacement while having DISH (diffuse idiopathic skeletal hyperostosis) and if it healed properly. I am 66 year old female with DISH.

Comment from: Daryl, 55-64 Male (Patient) Published: July 19

I have DISH (diffuse idiopathic skeletal hyperostosis) in all three levels of my spine and I also have OPLL (ossification of the posterior longitudinal ligament). I was diagnosed in 2014 and I am 56.The biggest problem is trying to get stuff off the floor and the constant headache.

Comment from: KenG, 75 or over Male (Patient) Published: May 02

I am currently 88. I was diagnosed with DISH (diffuse idiopathic skeletal hyperostosis) several years ago by a spinal doctor. It is in my lower back where part of my spine has fused. Biggest problem now is that I cannot stand or walk up straight. Standing straight is best in the morning after getting out of bed but that ability decreases as the day progresses. The pain in my lower back is almost unbearable at times. The doctor gave me a prescription for tramadol which I try not to use unless Tylenol does not solve the problem. I have to use a cane if the walking distance is more than a few yards. I was able to go into a rehabilitation program for several weeks to try to teach me how to walk and balance better. The spine doctor told me to try not fall on my back since it could cause it to break and if I was to have any surgery to let the physician know to be careful how they move me during the time I am unconscious. Of course I have had a couple of falls since then and of course they were on my back but everything is ok. I am trying to determine if there is some exercises that could help straighten my lower back muscles to help me stand more erect but so for no luck.

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Comment from: Packyderm, 65-74 Male (Patient) Published: April 10

I have very large anterior cervical spurs causing aspiration, thoracic pain, also pain when touched, hip bursitis from spurs, and finally spurs in instep of both ankles. Diagnosed with stenosis from DISH (idiopathic skeletal hyperostosis), I have tingles and shooting pain from time to time. I had high blood calcium years ago, thus parathyroid surgery, which may be part of the cause. I have been very active all my life, work and exercise (still do), and not overweight. Anyway, there is constant pain, it's not for the weak! Just to let folks know how bad it can get!

Comment from: onneysong2, 65-74 Male (Patient) Published: August 09

I was diagnosed at a Medical Center in Sacramento. My rural area has doctors who have never heard of DISH (diffuse idiopathic skeletal hyperostosis). There has been no follow-up because we have no rheumatologists. All they are doing is giving me water pills and support stockings. The condition has gotten steadily worse with chronic pain in my lumbar area with vacuum discs, and my shoulders. No treatments. No specialists and no hope especially now they are taking away all pain medications from us. Severe pain with no one to treat the conditions.

Comment from: TRUTH, 75 or over Male (Patient) Published: October 05

DISH, also known as Forestier’s disease took 4 years to diagnose in my case. Self-treatment involves weight loss (get down to suggested weight from your doctor), exercise, stay flexible, use heat, grin and bear it when it hurts.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer

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