Arthritis isn’t just “wear and tear”. It is inflammation, and understanding the causes of inflammation can help immeasurably in combating the debilitating and potentially life-altering effects of arthritis. The following article, from WebMD is a very straightforward discussion of the inflammatory process.
When I was finally diagnosed with AS ion 2009, I believe that I was typical in terms of the amount of time it takes to diagnose AS. Recent studies indicate that it routinely takes between seven and ten years to diagnose the disease. I want to link to a very good article about the disease, progression and treatment options, and to encourage you to follow the advice in the article: write a careful, thoughtful, detailed summary of your symptoms, progression of symptoms, and any other conditions that may be present for you.
In my case, I was difficult to diagnose because as a result of significant joint injuries and a series of exceptionally invasive surgeries beginning when I was twelve or thirteen, I had osteoarthritis one would normally expect in a man seventy years old or more. I had symptoms in the hands, feet, shoulders, lumbar back, cervical spine, hips and knees. When I first saw a rheumatologist, the person found the history of surgeries, bone grafting, boring out of spine nerve openings, and combined with the x-rays that showed osteoarthritic changes, the rheumatologist stopped looking and told me that I would need joint replacement and that my problem was osteoarthritis.
Later on, as the fatigue and pain began to affect muscles and connective tissue like ligaments and tendons, I decided to see if perhaps the problem was metabolic. I have hypothyroidism, and when I saw an endocrinologist a complete workup showed that many of my pituitary systems were far outside normal ranges. After some evaluation and treatments, I was referred to a very experienced and exceptional rheumatologist named Steven Overman at the Seattle Arthritis Clinic. The endocrinologist believed I had an autoimmune connective tissue disease.
Dr. Overman did a complete workup, and after evaluating all the data, was able to tell me that yes, I had osteoarthritis, but the main problem, causing the connective tissue inflammation, fatigue, hip, sacroiliac pain and the pain from back injuries and arthritic changes (many of the facet openings were being filled in with arthritic material, causing the nerves to be compressed as they exited the spine). He also found osteophytes (arthritic bone spurs) at the point where ligaments and tendons attach to bone.
Finally, after ten years of declining health, chronic pain that seemed to get worse every year, fatigue that made the travel and long hours of my executive job more and more difficult, I had a diagnosis and could begin treating the root problem. The morning stiffness that lasted a couple of hours and sometimes more, the need to spend hours in a position that took the load off my spine and knees, the poor sleep and frequent interruptions, the increasing number of days when I was too fatigued and too sore, and somehow less able to concentrate…all could now begin to be treated.
I encourage you…don’t give up. Don’t assume you are just a wimp (I did!). Don’t give up when your first (luckily my Internist, Dr. Warren Fein, also saw the deterioration and was willing and helpful in pursuit of the cause(s) of my declining health and possible treatments – I’ll forever be grateful for such an exceptional GP to help me though my struggle to find a cause for truly life-changing health changes) or second or tenth doctor doesn’t get you some improvement. You have to be your own advocate and keep on working at researching your symptoms, finding possibilities and investigating them with whatever doctor you can at that time. The AVERAGE time to diagnosis for AS is 7-10 years. Don’t give up until you find some relief. Some AS patients are able to do amazing things after treatment – I know of one who ran a 5k. I am still very much in a place where I have trouble getting around, and have to conserve my energy every day, just to be able to do the most important things. But I have a path to a better quality of life, and I want that for myself, and for you, if you suffer from AS.
Please read the article below and start your own trek toward a better life.
This article is from this month’s Spondylitis Association of America publication, and I identified with the author in a number of his observations. As he says in the article, the stories of people with AS are as unique and complex as the disease itself. Many people have been suffering and searching for answers for years. Many people alienate the people closest to them. The impact of pain, limitations and fatigue often cause irritability, frustration, social withdrawal and the gradual (or not so gradual) loss of ability to do normal or enjoyable activities can leave one feeling depressed, grief-stricken, even eroding self-confidence, reasoning ability and memory.
The author hits upon an outstanding concept when he recognizes with the diagnosis he became part of a group. A group he wants nothing to do with, and a group of one – the author himself. At least initially. It is true that most people have no idea what SA is, or what it can do to a person, and that alone tends to isolate an AS patient from most of the people in his or her life.
Again, if AS affects you, or anyone in your life, this article is worth reading.
If someone in your life has Ankylosing Spondylitis, this article is an excellent and succinct tutorial that will give insight into how the disease affects them. If you have AS, this article is an excellent tutorial and offers some very good information to consider.
This is an outstanding article describing the impacts of Ankylosing Spondylitis. Many people – if they have heard of it at all – think AS affects only the lower spine. This article describes the process and progression of the disease, and the impacts on other areas of the body, fatigue and even chest pains caused by AS.
I find myself in the position of having an advanced level of AS – impacts in the shoulders, hips, knees, back, and calcification (causing inflammation) where ligaments and tendons attach to bone. Because of injuries early in life, and the resulting early onset of osteoarthritis, the first two rheumatologists I saw simply noted the osteoarthritis and stopped looking there. Finally, I was referred to an excellent doctor who looked beyond the first issue and identified AS as a culprit in my life. This diagnosis allowed me to get treatment for the process (AS) that was causing most of my symptoms- including Remicade infusion therapy- which helped me a great deal. If you’d like to read more about Dr. Overman, and his highly regarded book - You Don’t LOOK Sick! Living Well With Invisible Chronic Illness, which was a finalist in the Health category of Best Books 2005 awarded by USA Book News, here is a link to his profile and clinic information: Seattle Arthritis Clinic Staff
Understanding the disease you have, and managing your own treatment, lifestyle and health is an absolute necessity in my opinion, and this article is a good place to start:
Complications of Spondylitis - Ankylosing Spondylitis Complications, Areas of Inflammation and More
I went in today for my Remicade infusion. After two loading doses I had definitely felt some real improvement in my smaller joints. I’d had pain and stiffness in my hands, which had made typing and even writing much with pen or pencil difficult. My left thumb and my right middle finger would sometimes lock in position and I literally had to snap them loose with the other hand. And it didn’t feel good! My feet as well as the heels of the foot were always stiff and sore, especially with any standing at all. The thickening of both shoulders had stretched the muscles and connective tissue and those hurt often. There were other aches and pains as well. Remicade thus far has improved the way those smaller joints feel by a noticeable amount. I am hoping that I see even more benefit now that it is at full strength in my blood. Since advanced osteoarthritis – something I have a strong family history of, but that likely was set in motion decades earlier than typically by the bone-grafting and revascularizations surgeries I had on my left knee as an early teen – is another contributor to my creakiness, and my knees have both been very sore, I got injections today of lidocaine (numbed the joint for an hour or two) and cortisone (intended to reduce inflammation). Hopefully the cortisone will reduce the inflammation. I’ll also have the synthetic joint fluid injections done next week or so. Those of you who’ve had needles inserted into swollen and sore joints will know that it isn’t that much fun. Today the lidocaine kicked in quickly and within seconds the knees weren’t hurting at all. I’d love to be able to use lidocaine every day! I’ll have to hope that the cortisone does it’s bit and the synthetic joint fluid works well also.
It is always complicated to resolve interrelated conditions - when you have more than one or two issues contributing to one another, and I’m working on a half-dozen conditions that feed one another. I’ve been pretty limited and I am still not able to be very active. But for the first time in years I have seen this degenerative group of conditions stopped, and actual progress has begun. So I have my fingers crossed. I’d seen a rheumatologist a couple years ago, but that doc noted advanced osteoarthritis and sent me on my way with instructions to see an orthopedic surgeon and get the knees replaced. I was referred to Dr. Stephen Overman at Seattle Arthritis Clinic and from the moment I had my intake appointment I knew that if I could be helped, I would be. He’s written a great book for people combating diseases which are not obvious, called You Don't Look Sick!, written with a patient named Joy H. Selak (http://www.joywrites.com/).
As a person who has always been active, busy, engaged and had a good time too, the degenerative process that I had been experiencing over recent years was more like a death in the family than an illness. I found myself unable to do so many things I’d always done, and my sense of humor went to live with somebody else! Though I have a long way to go, Dr. Overman, the book he has written with Ms. Selak, Remicade, and the many tools and techniques I’ve been made aware of at the Seattle Arthritis Clinic have given me the first progress I’ve seen in years, and hope that I’ll gain back a meaningful semblance of the things I have seen slip away in recent years.
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