Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Interview for Assignment due Sunday by 11:55pm

What is your log in name: Billbc

What has caused you the most pain: SI joint
How long have you had AS: 2 1/2 years
Where did you start to fuse first: Left SI Joint
How old were you when you first started getting symptoms: Late 40's

Oakleaf, I was very lucky as far as nerve damage, had a little in the tip of each index finger at first and my grip was pretty weak, but it all came back. I took a back flip from a garden tractor was how I broke it. Local Dr. could not see the break in exray, so he told me I might have broken some of the fusing loose, and sent me home with a soft collar on. Being kind of stubborn and hardheaded I sat home 4 more days before going to OKC to the bone and joint clinic. Installing the halo and lineing the break back up the best they could was the most painful experience I have ever had. I had to wear the halo 3 1/2 months.
J.R.

JR, where do you live to go to OKC to Bone and Joint? I spent about 40 years going to that clinic before I changed.
I did have about an hour and a half drive to get here. Now we live here. Close to all of the different specialists and all the special people in our life. Kids, grands, siblings, nieces, nephews, brothers, sister, etc. and it only takes me 5 minutes to get to my dr. instead of planning on an all day trip like I used to.

If this is none of my business, not going to hurt my feeings by saying so.

Blessings.
Possi

sunday was just her outline paper she still has to do alot more for the class and AS is still her subject to do a paper on so lets keep the info commin ok.....oak

Some additional info I hope will be helpfull to you.

The source is: http://www.medifocushealth.com/RH001/Qua...Spondylitis.php

Article below:

Quality of Life Issues in Ankylosing Spondylitis
Quality of life issues relating to a specific illness such as ankylosing spondylitis (AS) is typically measured by standardized questionnaires that request information relating to several aspects of the illness, including:
• Symptoms
• Physical mobility and function
• Employment status
• Social interactions including marital, familial, and work-related interactions
• Psychological status
• Financial burden of the illness
• Side-effects of medications
Ankylosing spondylitis is a chronic condition and patients typically experience symptoms throughout the course of the condition over many decades. Although the symptoms of AS vary widely among individuals, back pain and back stiffness are the most common. Because much of the data regarding quality of life for patients with ankylosing spondylitis is derived from questionnaires filled out by patients enrolled in rheumatology clinics, it is possible if not probable, that the information regarding quality of life issues and impact on activities of daily living is skewed towards people who have more significant symptoms. In general, the overall impact of ankylosing spondylitis on quality of life and activities of daily living is less pronounced than for many other chronic rheumatic conditions.
In general, quality of life issues facing patients with ankylosing spondylitis may include:
• Sleep disturbances resulting in moderate to severe fatigue
• Altered postural appearance due to back pain and stiffness
• Increased physical dependency on family and friends which may impact social relationships
• Anxiety
• Reduced ability to care for oneself
• Additional medical expenses for AS-related problems such as doctor visits, medications, and physical therapy
• Discomfort from side-effects of drugs
• Loss or reduction of income due to frequent absence from the workplace
Some patients find the lack of cure for ankylosing spondylitis very frustrating. While NSAIDs and physical therapy are considered the gold standard treatment for ankylosing spondylitis, they are effective only when the patient is taking them but do nothing to slow or change the course of disease progression. The side effects of NSAIDs may minimize their overall benefit and cause some patients to discontinue their use. The second level medications (DMARDs and corticosteroids) are effective temporarily for some people but their overall efficacy has not been clearly proven in clinical trials. In addition, the major benefit of physical therapy for many patients is preservation of spinal flexibility but any relationship to decreasing pain and stiffness is still a topic of debate. Anti- TNF-alpha drugs are promising in terms of their relief from symptoms and altering the inflammatory progression of ankylosing spondylitis, however, these drugs are still under investigation and are not prescribed routinely.
During periods of acute flare-ups or increased inflammation and disease activity, patients report greater negative impact on quality of life and normal activities of daily living. In general, the research regarding lifestyle modification issues for patients afflicted with ankylosing spondylitis can be summarized as follows:
Symptoms of Ankylosing Spondylitis and Quality of Life
Daily pain, stiffness, and fatigue, the three most common symptoms of ankylosing spondylitis (AS), have been reported to occur in up to 70% of AS patients. In some patients, persistent pain may continue over many decades. A survey to assess the pain levels of 83 patients in a rheumatology clinic approximately 15 years after diagnosis with ankylosing spondylitis, revealed that approximately 70% found pain to be either constant or progressive over the years. Stiffness may also be progressive over the decades.
About 10% of patients with ankylosing spondylitis also report trouble sleeping resulting in moderate to severe fatigue. Fatigue has been linked to the severity of pain, stiffness, and functioning disability. Many patients in this study also expressed confidence that if their sleep disturbances could be resolved, their level of fatigue would also diminish. It is, therefore, important for patients with ankylosing spondylitis who experience significant sleep disturbances to discuss with their health care provider the various treatment options and lifestyle modifications available to improve sleep habits in order to minimize or reduce the degree of fatigue.

Functional Disability for Patients With Ankylosing Spondylitis
Functional disability measures the extent to which self-care activities, mobility, and performance of household tasks have been impacted by the diagnosis of ankylosing spondylitis (AS). Many AS patients (up to 45% by some estimates) experience only mild functional/physical disability, affected mostly by limited mobility. Ankylosing spondylitis patients with more severe disease activity (e.g., severe pain, stiffness, peripheral/hip arthritis) are at greater risk for developing functional disability. Physical therapy and, in some cases, hip replacement surgery or surgical correction of spinal kyphosis (abnormal curvature of the spine) can help improve functional disabilities in patients with greater disease activity.
The severity of functional disability may be affected by several factors, including:
• Duration of AS
• Young age of onset
• Being male
• Presence of peripheral arthritis
• Hip or neck arthritic involvement
• Presence of other illnesses (co-morbid conditions)
Physical therapy has been shown to improve functional disability and may even stabilize function when exercise and treatment continue for up to 18 months.
Employment for Patients With Ankylosing Spondylitis
Research has shown that between up to 85% of patients with ankylosing spondylitis (AS) remain employed even after having the condition for 14 years or longer. Risk factors for lower rates of employment include:
• Patients with more severe disease (e.g., restricted spinal mobility)
• Patients with active AS
• Reduced physical functional capacity
• Longer disease duration
• Older age
• Chronic pain
• Physically demanding job
• Lower level of education
• Lower socioeconomic levels
• Hip arthritis or replacement
• Presence of other illness
Some patients with ankylosing spondylitis (estimates are about 8%) report having to change occupations to less physically demanding jobs. Up to 33% of patients with ankylosing spondylitis report having to take extended sick leave at least once from their place of employment. There are indications that the risk relating to employment issues is reduced when the patient receives vocational counseling.
Psychosocial Aspects of Ankylosing Spondylitis
Because ankylosing spondylitis (AS) is a chronic condition, it is estimated that about 25% of patients will develop emotional problems such as anxiety and depression. Depression tends to be more prevalent in women than men (approximately 46% vs. 26%). Data from questionnaires indicates that depression in women relates more to the severity of pain and depression in men relates to pain as well as level of functional disability. Thus, the risk factors for the development of psychological problems in patients with ankylosing spondylitis include severe, chronic pain and functional disability.
Social interactions are not typically impacted to a significant extent among patients with ankylosing spondylitis. Some women with ankylosing spondylitis, however, report having sexual relations less frequently and with less enjoyment than women without AS. Sexual problems do not appear to be prevalent in men with ankylosing spondylitis.
Financial Burden for Patients With Ankylosing Spondylitis
Patients with ankylosing spondylitis (AS) may incur significant medical costs that are often unexpected. Data from a study conducted in Denmark estimated additional costs to include:
• 33% additional costs for hospitalizations
• 30% additional costs for medications
• 8% additional costs for physician visits
• 27% additional costs for other services such as physical therapy
Because the majority of patients with ankylosing spondylitis remain employed and their functional disability is usually limited, the actual outlay of extra finances is lower for patients with ankylosing spondylitis than for some other rheumatological conditions.


Tim

Oaklet! Hi! (this is awesome that you're doing a paper on us!)

For my login, look to your left . . .

The most pain . . . wow that's a tough one. Knees, hips, feet, SI, neck, and fingers. Iritis is no fun, but it goes away, so I'm not counting it.

I'm starting to fuse in the SIs and the feet (not toes or ankles - the joints between those, in the middle of the foot - metatarsals? I think that's what they're called. That's a biznitch) I also have calcium deposits along my finger bones, at the entheses, but it's not to the joints yet.

I've had this evil creature in my body for 13 years, it started very suddenly and noticeably in my left hip at age 10 (september 4th, 1994 . . . 7:30 pm. haha). My brother's AS also started at age 10, suddenly in the left hip. He's fusing in his ribs first.

Thanks for taking an interest in this and writing about it . . .

-Bridget

Possi, closest large town is Woodward, I live about 20 miles south in a little town called Vici( rhyme the 2 syllables with Hi and Bye). I have been going there since 1989. It's about 135 mile drive one way.
J.R.

Oh Girl Child of Oakleaf!!!

How awesome of you to do a paper on AS!! What a great daughter you are!!

What is your log in name: Moonbees

What has caused you the most pain: SI joints and lower back

How long have you had AS: Officially DXed in 2003 but suspect I have had it over 16 years before that

Where did you start to fuse first: My first fusion was in L4 and L5. I have much more fusion now.
Here is a pic that I found helpful about vertebrae location:http://www.savagechiropractic.com/Spine_Explore_L2.htm

How old were you when you first started getting symptoms:
I think that I have had AS symptoms since my late teens but was treated for other ailments..sciolosis, strained muscles, low iron, but I do know that my first classic symptoms of AS came after I gave birth to my daughter in 1989, some 14 years before my official DX. By the time I was DXed in 2003, I already had severe deformity in my spine.

I hope this helps you with your paper!! I am excited to see the results. Please keep us posted!!!

Take care, OakGirl_23!
Holly

I am well familiar with that part of the state. We currently are in the OKC metro area but lived up on the Kansas/OK line about 100 miles from here for most of our life. I have drive that SO many times. I feel for you.
I was just very interested in seeing another Okie here.

Have you had your share of rain? We had sprinkles today but we have had enough for the rest of the year I think.

Good to talk to you.
Possi

Hi,
Sorry I'm a bit late to reply but hopefully will still be of use.

What is your log in name: Funksterman

What has caused you the most pain: When my neck fused about 10 years ago

How long have you had AS: 21

Where did you start to fuse first: SI (sacroiliac joint)

How old were you when you first started getting symptoms: 14

Cheers
Jo