... I, after four years of constant pain, decided to finally do something to improve my quality of life. I am 25 years old and while I don't know much about this as of yet, I'm devastated that being so young I'm facing something that, pain wise, I will likely never overcome. My doctor has started me on a 10mcg BuTrans patch along with six 325mg oxycodone a day. I absolutely do not need six and because I am terrified of my body forming an dependency on them, I do my best to suffer through the day without them and typically just take two before bed so I'm able to sleep. I'm wondering if anyone has had any luck with alternative measures of pain management - maybe acupuncture? I'm not excited about the idea of going through the rest of life on medications. Any information anyone has on how to cope with all of this would be greatly appreciated. Thanks!
Hon, its not worth suffering. We get dependent on pain meds, that's a fact of life. So is your pain. Most people can wean off of them with out a major problem. We hear the horror stories about addiction, but the physical dependency isn't addiction and it can be dealt with. If you are going to have pain the rest of you life, you really shouldn't deny yourself some relief. With chronic pain, it is managed differently then acute pain. In chronic pain, the goal is to prevent it, not chase after it once it happens. It is much easier to control pain that way.
Google Phoenix Tears and Rick Simpson. It works on pain. It works on cancer. I developed gynecomastia (he hooters) with a lump the size of my little finger in my right breast. I took this for two weeks and the lump was gone. I backed off on the Tears and the pain came back so I'm on it until my caregiver tells me to stop. My wife takes it for pain. Everybody responds differently. You do not get high from this and after taking it for a while you won't be able to get high. I am not interested. I just want to live pain free. Good luck!
Sorry to hear about your situation. On line I read, "Physiotherapy and manipulative therapy shows beneficial results for decreasing pain and increasing spinal range of motion." (On Wikipedia) No medication with those treatments. You don't mention your doctor having recommended that at all. You might search more online for treatments and definately ask your doctor to write referral for you to get those treatments. Good luck.
If you can afford it, go with the physical therapy and get a trainer who is certified for this type of body work. My sister has Osteo. Once she started a routine and dropped some pounds form the special workouts, she was able to reduce her pain considerably. With any type of bone disorder, it is essential to maintain core strength to hold the bones in their proper position and get ones weight to as low as is healthy. This reduces pain as well as the body doesn't work as hard. Even ten pounds makes a difference.
I know this sounds devastating. You can go forward and keep your life going. Many people on this site are facing their own difficult diseases or disease process. Stay in touch, share the stories and both of you will receive support and caring. Have you contacted the rare disease site to look for resources! You may find additional support there as well.
Wishing you solutions, better health and the courage to keep it going! Karen
I was doing DISH research and ran across your post.
I too have DISH. I felt so alone for a while. I have since connected with approx 120 other ppl across the world with the same DX. We share a community on facebook, should you want to join us there in addition to this thread. We are all trying to share as much information as possible to get relief and answers to our disease. We have many there that use natural means for pain relief, and others who have to rely upon the narcotics. We are at many different stages of DISH, and that factors into our choices. Should you want to PM me, please don't hesitate. I will gladly do all I can to help you out. Tammy
hi i to suffer from DISH hydrotheriapy works great for it but mine has got bad as i had to stop going to the pool for treatment now a few years ago and have regreated it ever since you do need to keep as active as u can everyday do something to stop ur joints from getting stiff and sore. dave watson
With d.i.s.h I was told by a retiring ortho to undertake non-weight bearing exercises such as deep water hydrotheray, designed by an authorised physio.
There is enough stretching in a proper program, whilst you run etc in the water.
Gym programs, normal stretching, manipulative therapies are not good.Your ligaments at the insertions harden, so why would you stretch a bony ligament.
Deep water hydrotherapy gets the blood flowing, the aim is to strengthen the muscles, but there are gentle stretches while you are undertaking exercises.You have to get fit but not muscle bound, otherwise you will get negative results and more pain
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