DISH SYNDROME

Hi Paul I think usually Dish progresses slowly however mine has really got worse over the last six months,12 months ago I was taking people underground in an old slate mine a couple of miles underground as a guide,now every step I take is agony only being able to walk a very short distance just hoping I dont get any worse Steve

Hi Paul, As I understand in it progresses at varying rates and indeed sometime stops and then starts up again for no known reason. My "growth" rate is measured by MRI scans and has speeded up over the last few month so that my breathing in now having to be closely monitored especially as I have a lung disease as well.  Have you ever had an MRI scan if not it might be worth it to give you a base to work from. Can I ask how old you are?  Lee 

Just newly diagnosed at 52. Looking more information on exercises, etc to help slow this process down and at least it's systems. 

Sorry everyone have been out of action for a while. Paul,DISH is a progressive disease sometimes slowly, sometimes hardly at all sometimes at quite a rate. Why this is no one knows although there is research bieng carried out in the USA. It can be a very painful disease and needs careful management by a Consualtant. The fact that you have been diagnosed is a start. The secret is to keep as mobile as you can and keep the pain under control. Somedays I find the pain is so bad that I just sit at my desk and hold my breath! must keep occupied somehow. Let me know if I can help further.Lee 

Hi Paul,keep positive,it is really hard constant pain can't get comfy every movement is agony pain killers don't do anything,I find that movement is essential to keep mobile even though it Hurt's to move slightly,i can only get some respite by finding a position and then keeping perfectly still once i move at all in pain again Steve

I can identify with Steve, when you "freeze" with pain then that's real pain and very difficult to cope with. Have you been on one of the pain management courses? I found them very good although that was a while ago now.  Ordinary pain killers will not touch the type of pain associated with DISH you are looking at the morphine family to do any good at all. If I am speaking somewhere or need to ensure I am clear of pain then that's the only answer. In all it's a nightmare. Lee

I have to admit that so far I have been very fortunate. The first indication that I had anything going on was back in 1998 an xray showed a bone spur in my thoracic spine. In 2013, I was diagnosed with dish with the characteristic flowing wax in the upper back. The doctor did an xray due to the level of pain I had developed. Since my diagnosis I was told there is nothing they can do for the disease except pain management, My pain levels have actually improved. My primary efforts in pain management has been dietary supplementation: magnesium, Vitamin D, Turmeric, boron, krill oil, cherries (as if I was treating gout) and plenty of water with appropriate levels of electrolytes. This, combined with weight loss and managing my sugar intake has been helpful.

Drugs for the pain, when needed, I have been using either ibuprofen or 'excedrin, while the addictive drugs, vicodin, hydromorphone, and percocet really haven't done anything for my pain, so do what works for you.

Regarding excercise, I am a massage therapist and have been working roughly 16 hours of massage clients per week, with careful monitoring of my fatigue levels.

I am probably a bit crazy by the standards of some people with DISH, In spite of the fracture risk( danger), I ride horses rougly 1-3 hours weekly. For most people I don't recommend this, but it part of my emotional DNA and need the mental relaxation it provides me. Fortunately for me, my horse is very calm, has a very smooth gaits and my level of riding prior to developing the disease allows me to ride safely. But the risk of falling and resulting injury may one day prove to be my undoing. One might say that horses are like Harley Davidsons, If you have to explain why, they will never understand. 

 An important aspect in all of this is the absolute need to keep moving. The more you sit around, the more painful it becomes. Pay attention to your posture especially while sitting and do what you can to maintain or improve it, slouching will definitely  create more fatigue to the muscles, adding to the pain.

 Know when to take a break and when to get up and move. You need the rest and you need sleep in order to fight off the pain. Exercise enough to keep your muscle tone. 

 Lastly, really has to do with mental, spiritual attitudes and having the support of people who care about you, as you need a healthy outlook to maintain hope when you are having rough days and hard times. Search for professional help when you need it, Giving into negative feelings will bring you into a downward spiral which you cannot afford with this disease.

Hi All, I'm in the states and havent found a resource like this here. Nice to have a community to share with. I was diagnosed a few months back after breaking a bone in my neck. After scans and xrays they found it was a bone spur, further testing revealed dish. The pain has continued to come on quickly and more severe. I started taking Celebrex twice a day which really helped. However its effects are not as good as they once were. I workout and have stopped bench pressing-not good for me and do a stretching Pilates class which helps. Vicodin helps when really bad up to two. Any suggestions for when the pain comes on would help. I find it comes on quickly.

Thank you in advance.