Diffuse idiopathic skeletal hyperostosis (DISH)
UPDATE I HAVE FOUND A FACEBOOK GROUP OF D.I.S.H SUFFERER’S
Also known as Forestier’s disease, Diffuse Idiopathic Skeletal Hyperostosis causes stiffness in your upper back and may also affect your neck and lower back. Some people experience diffuse idiopathic skeletal hyperostosis beyond the spine in areas such as their heels, ankles, knees, hips, shoulders, elbows and hands.”
http://www.mayoclinic.com/health/diffuse-idiopathic-skeletal-hyperostosis/DS00740
Quoted from the Mayo ClinicThe Symptoms may include – Stiffness, Pain, Loss of range of motion, difficulty swallowing or a hoarse voice
http://www.mayoclinic.com/health/diffuse-idiopathic-skeletal-hyperostosis/DS00740/DSECTION=symptomsRisk factors can include – long term use of retinoids, possibly excess vitamin A, being Male, age over 50 and having Diabetes II/raised insulin levels.
http://www.mayoclinic.com/health/diffuse-idiopathic-skeletal-hyperostosis/DS00740/DSECTION=risk-factorsMore at the mayo clinic –
Complications – http://www.mayoclinic.com/health/diffuse-idiopathic-skeletal-hyperostosis/DS00740/DSECTION=complications Tests – http://www.mayoclinic.com/health/diffuse-idiopathic-skeletal-hyperostosis/DS00740/DSECTION=tests-and-diagnosis Treatment – http://www.mayoclinic.com/health/diffuse-idiopathic-skeletal-hyperostosis/DS00740/DSECTION=treatments-and-drugs
Thanks to Steve who posted below, who found a US healthforum with a few people mentioning they have DISH –
http://www.healthboards.com/boards/index.php
If you have been diagnosed with D.I.S.H I’d like to hear from you and we can share info. Please fill in the comment form below –
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Hi
I have a Google alert, for mentions of ‘DISH’ setup and you blog post came up yesetrday. I have DISH and it first appeared, on some X-Rays I had done in 2008, at age 55.
I have the typical bridging ossification at T12/L1, L1/2, L2/3, L3/4, L4/5, L5/S1 also at T8/9 and T9/10 – so it’s pretty extensive.
I’ve seen a couple of specialists and have done a fair amount of research online. As you mentioned in your post there’s no cure and the best recommendation is to do exercises that involve stretching and strengthening.
I’ve done quite a bit of one-on-one work with a physiotherapist – mainly involving pilates.
The main problem, as I see it is because a lot of your spine isn’t moving properly, the bits that are get a real hammering so it’s really important to work ony our ‘core strength’
At the moment I do a small group class once a week with a Physio. There’s a lot of emphasis on moving correctly and strenthening. We do a lot of lunges, squats, stretches etc. I’v found it pretty helpful and I’m not getting as much back pain as I used to.
Couple of bits of info I’ve come across:
People with DISH are at much greater risk of spinal injury (and potentially paraplegia) from even minor falls or trauma to the back. If you’ve got a lot of bridging don’t go body surfing!
Some recent studies have shown that people who drink really large quantities of black tea get DISH like symptoms.
All the best.
40 male. I also have dish in just about the whole thoracic spine. Cause is unknow and I’m not diabetic or over weight significantly. I was just in a head on collision and I am now in a great deal of pain and none of the doctors know what to do. Truth be told, I didnt know Ihad it until the wreck. I am doing my best to keep my sanity and exercise but it has not helped the pain at all. I hope they find something soon as o way to live.
I have also read the same bits as above. Good luck gents and keep the faith!
G’Day Steve, good to hear from you, sorry to hear of your pain.
I’m not a doctor but also I’m no stranger to back pain. My guess is that your pain is not so much caused by the DISH but is the resultant damage and inflammation from the accident.
In my personal experience there are two factors of pain – inflammation and muscle spasm. I treat them both immediately I am aware of them- maybe not much help to you because you’re in major pain now, but handy to know once you are in some kind of remission.
If I think it’s inflammation, caused by normal activity, I find Voltaren cream amazingly good on my back, perhaps because the skin is close to the inlfammation. It works on necks and legs etc but no where near as good as it is on my back. I had some rubbed in last night and the pain went in 15 mins and I had a good sleep for several hours. I wrote about it here http://shed.robhealey.com.au/health/back-pain-relief/
If I feel a muscle starting to spasm then I take prescription painkilers, Panadeine Forte works v well for me. I don’t take any tablet unless I really have to, but I have found it’s vitally important to stop a spasm before it gets hold.
I once had a spasm that locked me rigid when I laid down, it was agony and I spent 6 weeks sleeping upright in a chair. The spasm was eventually released with large amounts of Valium then the physiotherapist could finally work on my back which apparently had felt like a steel bar for all those weeks!
I would look to your accident and see what damage is causing the pain and try and get that fixed. Once you recover, exercises on the core muscles is very good and I hope my advice above will help
Rob
Hi,
I’ve had back & hip pain for many years- as an Rn , I’ve spent a lifetime lifting etc. I was diagnosed with DISH several months ago, affecting my neck, thoracic & lumbar spine, pelvis and left heel. I believe my knees are also affected but they haven’t been scanned yet.I have limited ROM and areas of cord compression. I have been doing Taoist Tai Chi and feel it is an excellent method of maximizing flexibility.This form of Tai Chi is not a martial art-it was developed expressly for spinal/joint health.Taoist.org is a good website to check. Classes are all over the country. Also, MSM has been a very useful anti inflammatory medication. It has no side effects, doesn’t interact with other meds., is extremely safe and not expensive. It is a sulphur compound( good for hair & skin) The key is to take the proper dose- I take five 1000 mg. caps every morning and sometimes several more caps in the evening. It’s good to start with two caps and ,after a few days, add a cap. until you reach the amount that works for your particular situation.In larger doses, it is also helpful for allergies( mine are severe). I buy MSM through Vitacost.com-I get the NSI 1000 mg.- 240 caps for $9.99. Hope this info. may be helpful.
Hi Susan , thanks for posting. I hadn’t heard of MSM so I Googled it. Found a good explanation here http://www.msm-info.com/
I think I will give it a try
My DISH started at 37 , I am now 66 with fusion from T2-L1, had decompression for spinal cord compression 6 years ago as well as spinal fusion L3-L5 due to 3 stress fractures.
DISH also affects my ankles, feet, knees ,elbows , shoulders, and even inside my pelvis where long ligaments attach.
Due to have shoulder reconstruction any day as spurs have worn through ym rotator cuffs [both shoulders].
Take NSAIDS twice a day, magnesium complex for muscle spasm, very large amounts of glucosamine in combo with MSN too and large doses of omega 3 fish oil. I do pretty much everything in my home even the gardening, mind baby grandchildren and travel long distances by myself, by car, plane and train .
I live in Sydney, Australia
Hi Janet, thanks for posting, my idea is to have contact with fellow DISH sufferer’s and maybe one of us will come up with something that helps us or ideas that help us survive.
T2-L1,L3-L5 WOW you are really fused!!! you’re doing amazingly well if you can garden etc how the heck do you bend?
Those NSAIDS are not good for your stomach lining long term, I had to stop taking them. The Fish oil MSN Glucosamine and Magnesium seem to cover all the know ingredients that help.
My neck has 3 vertebrae fused together, plus the surgical spinal fusion L4-l5-S1 I still can’t work out how my neck fused, it’s moving all the time and I am constantly turning over when sleeping. I am doing stretching exercises hoping to stop more verts fusing, but there doesn’t seem to be much that can be done for the ligament to bone fusion.
Thanks again for posting, lets keep in touch
Havebeen taking Voltaren for about 28 years now…no-one initially diagnosed my spine but said ” nurses back”!!!
Now take Nexium daily which keeps my gut Ok.
Can’t survive without the nsaids, my back knows if I miss a dose.
I bend from the hips, can touch my toes. It’s a case of keep moving, keep moving, keep moving, positive attitude, knowledge and MAKING yourself DO everything
Hi again Janet, I assume that’s Voltaren tablets ? not the cream that I use?
“It’s a case of keep moving, keep moving, keep moving, positive attitude, knowledge and MAKING yourself DO everything”
Absolutely!! Good onya
Rob
thank you I have been afflicted by Plantar Fasciitis for the last 6 months – plantar fasciitis stretches has been wonderfully beneficial, thank you
Hi Rob, update again. Had shoulder reconstruction 4 months ago, all healing well but during pre-admission check, I found I had lost 3″in height and post-op carrying my arm in abduction sling for 6 weeks sent my back and left hip beserk and I was having trouble walking…found I was dragging my legs again and was exhausted.
I contacted my spinal surgeon and we did rush MRI”S, CATS, 3D XRAY and plain xray.
BINGO, the DISH has spread from T5 to T1 and L2 has moved and L5-S1 collapsed PLUS scoliosis really gone for a slide and taken previous surgical fusion L3-5 with it.
After Christmas having fusion from T12- sacrum with bridges to pelvis…6-8 weeks in hospital and rehab.
To Susan, I too was an RN working mainly in aged care or home nursing’ all people with plantar fasciitis and rotator cuff problems should get checked too as first signs.
Folks this damn DISH keeps spreading, get regular xrays.
Rob, I can’t find the Facebook site, is there an easy address ?
Oh Janet that is terrible, thanks for sharing and my good wishes for your op and the future
Rob
I’m a 46yo female who was diagnosed with DISH a few months ago by a chiropractor (which has since been confirmed by a radiologist and a rheumatologist). I am not the ‘typical’ patient in that I am female, under 50, healthy weight, not diabetic, no heart disease, no metabolic syndromes. I have involvement in my cervical, thoracic, lumbar spine and my hips. I’ve been to so many doctors, chiropractors, physical therapists over the last 10 years trying to find out why I hurt so bad. I’ve come up with a few things that seem to help.
1.) yoga, at least 3 times a week. It is a saving grace. I also do a lot of other exercises, but I can’t miss my yoga. (I’m certified to teach pilates, but can no longer do a lot of it).
2.) ginger baths. Put a cup or so of ground ginger (cheap in the bulk section of the grocery) in a hot bath and soak for 10-15 minutes. It will make you sleepy, so do this just before bed. Relieves a lot of pain.
3.) Zheng Gu Shei – this is a chinese linament that I get from Amazon.com. It’s a great pain reliever.
4.) Am following an anti-inflammatory diet. Wow! what a differnce. Look at this blog, I have a Biology background and this guy knows what he’s talking about. http://coolinginflammation.blogspot.com/
5.) Supplements I am taking: flax seed oil (I’m allergic to fish, or I would be taking fish oil), Vit D, magnesium, methlyselenocysteine, Vit B injections, Turmeric, and a probiotic.
6.) I also get regular massage therapy, not sure it helps the DISH, but it makes me feel better for a while.
Hope something I have said helps someone. It’s nice to know there are others out there. I’m a LOT disgusted with the medical community and their lack of interest in this dibilitating disease. The rheumatologist basically told me to take 2 aspirin and call him in 6 months for another worthless office visit.
Hi Cindy thanks for posting- I see you’ve found the Facebook DISH group, well done. there doesn’t seem to be much medical help for us, I agree. Because of that i think our best chance is to group together and swap information.
Rob
Cindy sounds like me with no diabetes etc,etc,DISH in entire body.Full bloods last week showed normal calcium levels but very low Vit D3.Have now added that to other non prescribed meds. Dr also said that people with DISH have false readings for bone density scans, also found bones “spongy” but age causes this he said, not osteoporosis.
Still find chiropractic with steel fingers works best.
Same old, same old…keep moving, keep moving.
Am fortunate that my GP has back probs and is checking out everything he can re DISH and wants me to change rheumatologists to a more pro-active ,forward thinking one but can’t get appt till Feb
I was diagnosed with D.I.S.H. about 10 years ago. All I’ve received for treatment is 6 vicodine a day and 3-6 Advil a day. Not much other help. Have looked for others with this problem and found this site. For a while I thought I was the only one having this problem, I guess not. Lately I have been on Cymbalta, it seems to help some but I don’t like the side effects. I did go to a chiropractor for several weeks but the Dr said I was the first person that was worse after adjustments. Tho it’s supposed to be a back disease, I also have pain in the pelvis, hips, knees and shoulders. It will be interesting to see what others are doing.
Thanks for listening.
Don
Another under 50 female, no diabetes and all the rest. C3-C7 have fused. Hip osteotomy last year. Even taking Tramal and Mobic, I’m in a lot of pain, with some days better than others.
Thanks for the tips, Cindy.
Hi Rob, here is some updated information on DISH.Have confirmation about another causal factor …Massive doses of Vitamin A IS a factor, this has been veridated by my Spinal surgeon, Shoulder surgeon, Dermatologist and even now known by Vets who broadcast not to give cats and dogs frequent meals of liver as causes spinal problems related to calcium deposits and spurs !!! Even the new rheumatologist I saw a fortnight ago confirmed that people in their 30’s and early 40’s who were given Roactutane for acne as teenagers, are now presenting with early DISH.
I have also heard from several people in the medical field of a treatment that can do wonders for DISH. under a professional qualified Naturopath. Silica breaks down the calcium deposits gradually from the ligaments involved.Also frquent massgaes and hydrotherapy to keep exercising. Just mentioning my problem when buying medication led to both encouragements to take silica, 1 person who works at a local multi discipline clinic offered to work with me but my back surgery is now deoendant on the fusion for screw attachment, hope this is helpfull for others thospecially for those of us not diabetic or metabolic syndrome who seek anwers….. janet