I have been dealing with Osteo for many years in my knees and now my hands. All I can tell you is there will be good days and days that suck. I hope that the good days far outnumber the others.
Sorry to haer this Sean, hopefully you'll find some way to handle it all with little quality of life decline. You'll be in my thoughts and prayers.
Thanks everyone, all the comments mean a lot to me. Getting this at 36 is terrible but at least I am young and living in an era of rapid medical breakthroughs and discoveries. I'm hopeful better treatments and breakthrough technologies will emerge over the next 10yrs. I will try to focus on that and treat this as a temporary glitch in my lifetime. There is a wealth of info out there regarding supplements and their benefits, several which have independent evidence based studies or double blind trials behind them for example Pycnogenol which is a bark extract.. those taking 100mg a day for three months showed improvement in symptoms of 56%. Some studies show benefits of glucosamine, chondritin and MSM, omega oils, colostrum, hyaluronic acid, selenium, boron, etc. I have been taking a lot of these and doing the inversion table therapy 3 times daily plus a heat pack seems to help too. Of course there is no shortage of snake oil salesmen out there so I rarely touch anything with only anecdotal evidence behind it.
I've been struggling with a persistent condition of chronic pain for about three months now. A few doctors have abandoned me and I'm now in the care of a homeopathic physician. I've made numerous dietary changes and about to dive into the "Eat for your Type" diet which is all about eating based on your blood type. http://www.dadamo.com/ I've heard wonderful stories of recovery with people who have done this. Don't know if it might help you but probably can't hurt.
My sympathies Sean. Must have been a shock to discover. However there are real, positive stories about living with this condition. Another friend of mine has managed his severe osteoarthritis in back and legs for nearly 20yrs I known him. He opened a new restaurant a few years ago and had two young children. Doing very well. So for him it could be managed.
Will ring you over next cpl days.
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Keep up the good fight, Sean. The more I deal with the medical profession, the more I become convinced it is as much black magic as it is science. Try some glucosamine-controitin supplements (I know they're meant for joint health, but your spine is a series of articulated bones, lubricated by cartilage). Another thing to think of is doing what Hemmingway did for his back pain- he had a desk made so he could work standing up. There's actually a whole school of workplace design taking hold that is getting rid of the traditional desk chair and implementing stand-up workspaces because they're healthier and in many ways LESS stressful.
Sean, a year and a half ago I sat in one of my doctors office and ask of him to give me ten or fifteen years to finish my work and wrap things up. I was at the all time low, mentally, physically, and spiritually and was devoid of all hope. Since then a team of physicians adjusted my medications and finally over many months gotten me to a level that I can live with.
Then one month ago today my insurance company refused to pay for half of the medications I need to live a fair life. I decided to go off of the declined one, the insurance now wants me to try some other drugs, and my mental status went up a bit and my pain went to the bottom of the barrel. I know what it's like to be awake sitting slumped over in a chair with pain while everyone gets up showers and is on their way to school or work. So I start over that same road to pain relief.
I have had surgery, pt, alt. approaches like acupuncture, tens, ideation, thought therapy, meditation, reading, writing, walking, dieting, reduced lifestyle, increased mobility, you name it and I've been there.
I had a DECA scan and have arthritis in the extremities and bone demineralization but it isn't treatable beyond massive amounts of Calcium and Vitamin D. The bottom line is the pain level. One a scale from 1 to 10 how would you rate your pain level right now. The answer is pain is what you say it is. It can't be measured or defined by the physician. A huge part of your situation is going to be pain management, then physical treatment. When the degeneration affects the function of a system in the body it has to be dealt with or the body as a whole will fail. The treatment plan has to be specific and explained to you in a way that you can see exactly what it does.
Everyone is different and that's where a tailed treatment plan for you will be different than for other people, that's why "pain is what you say it is". Lack of sleep can cause you judgment to be impaired also and it's important to write down the specifics and if possible to have another person who is knowledgeable of the plan.
One last thing, I bought a memory foam mattress after surgery many years ago and it was about twelve hundred dollars and didn't work worth a dam. Live and learn the expensive way. Good luck and let us know how you are doing.
Everytime I find a film or paper that I like, they discontinue it. - Paul Strand - Aperture monograph on Strand
I am sorry Sean, I wish you the best in fighting it and living a beautiful life nevertheless.
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Sean, first off, you can beat this. Stay positive and look for humor. Secondly this is going to sound like a crazy idea but have you heard of the "Magic Bag"? My wife has back problems and the silly thing really works. You just pop it in the microwave for a minute on both sides and it warms whatever is in it perfectly. They are cheap and very durable. If you cannot get 1 in N.Z. but want to try 1, I will be more than happy to send you one from Canada. I have broken many bones in my body and I use it all the time for my arthritus. No drugs or anything else intrusive. Just email me if you would like me to get one for you.
You run a great site and I am sincerely offering to help in any way I can.
Chronic pain sucks. One perspective to keep in mind is that just about everything in pain management varies drastically from person to person. Something that did nothing for the one person you talk to may work wonders for you, an vice versa. Frustrating as hell. It's a constant process of adjusting, adapting and recalibrating.
I started on this at 11, and I'm 48 now. So to me it is just life. Good days and bad days, and lots of "if I do that, I'll hurt for days" tossed into the decisions.
I wish you well in finding and keeping the comfort zone.