A Bit about My Life with Ankylosing Spondylitis

Photograph 1 : PRANGIN MALL INTERIOR, Photographed with my trusty Panasonic DMC-LZ8: Shutter Speed 1/5 Sec; Aperture @ f/4.5; ISO = 100. This image has NOTHING to do with this article, but I took this photograph yesterday while at the mall, and I like the results…so, here it is!  My Panasonic camera is also very Ankylosing Spondylitis friendly because it is a Point-And-Shoot Camera, and I can wear it in its case, on my pants belt.  Keep that in mind if you have AS:  The weight of camera gear will affect your back health – believe me – I know.

My Life with Ankylosing Spondylitis

It is 5:40am: I am awake. I am in pain.

I only fell asleep at about 2:00am. At least I got that little bit of sleep with the help of my pain meds, which finally kicked in around that time.

I got approximately 3 hours of sleep. However, “The numbers don’t add up you say”: Correct, the other 40 minutes were used up being awake each time a stabbing pain shot through my neck, my ribcage, my spine, or my hip joints. During those brief times, about 20, or 30, or more, when I’m tossing and turning to get a better position to sleep, yes, that is where those 40 minutes go to during the three hours I do get to sleep at night. This trend is not happening to me every night, but it does most nights: And, when you add up all the missed sleep over 33 years of living with AS, that is a hell of a lot of days, or weeks of sleep missed.

Moreover, you may be saying: “But Nawfal, 3 hours sleep a night isn’t so bad,” right.  I will probably respond with,

“What planet do you live on?”

I need at least 9 hours sleep, full-hours of sleep, to recover from the suffering I go through the day before, but I rarely come close to 6 or 7 hours of sleep a day.  That is NOT enough sleep for someone suffering from chronic pain.

I’ll also tell you that to get those 3 hours of sleep I take enough pain killers that would probably knock-the-crud out of a Hippopotamus!

I have to take 600 to 900mg of Gabapentin and 100mg of Tramadol at night to deal with the pain, and then, it still isn’t totally effective! These are HEAVY-DUTY pain and nerve painkillers. Those are the amounts I take ONLY at night: I have to take more than that during the daylight hours to get through the day with half the amount of pain. Therefore, don’t be telling an AS’er that, “Oh, it’s not that bad,” or, “Oh, meditation will cure you,” or whatever else witch-doctor medicine you may prescribe to—don’t be telling an AS sufferer what they should feel like because if you don’t have AS, then you don’t have a clue what you are talking about. You have no understanding what we go through. Even the smarty doctors don’t grasp what we deal with; all that the doctors know are book-smarts of AS; however, they don’t understand the real toll it takes on a Spondy.

(Updated 13 January 2017)  I am currently under a new pain meds regime, which is pretty good.  I go to the Pain Clinic, and the doctors do care about my pain-control regime.

THIS ESSAY IS MEANT FOR INFORMATIONAL PURPOSES!

I’m writing this because I think people don’t have a clue what AS’ers, or Spondies go through.  I’m writing this to educate people a bit about what Ankylosing Spondylitis is, and how it affects people with this disease.  

I’m not qualified to tell you what other AS sufferers go through because we are all suffering differently with diverse pain in different parts of our body, and to unusual degrees of pain.

In this essay, I will tell you a little about the pain I deal with daily, and that will give you an ideal of what we, most AS’ers, go through daily. I will use AS’ers and Spondy (Spondies) interchangeably, just to let you know.

Some Spondies are much worse off than I am; and others, they are better off than I am. The AS condition that any one person deals with, can change over time. It is unpredictable, and that is what makes it so maddening and frustrating for the AS patient. There are huge flare-up times when pain is excruciating; and then, there are times when the pain lulls and is just there at the surface, and very manageable. Spondies and their circumstances are all different.

Ankylosing Spondylitis (AS)—What is it?

Let me offer you some information about AS, from medical sources.

The first description of AS, below, is from the Mayo Clinic website, and it is a very good source of information on the topic of Ankylosing Spondylitis. Please excuse my cutting and pasting of definitions; however, I cannot explain it medically like the sources can, and I want to give you the best explanations possible from the medical sources, giving credit to the sources below each quotation:

“Ankylosing spondylitis is an inflammatory disease that can cause some of the vertebrae in your spine to fuse together. This fusing makes the spine less flexible and can result in a hunched-forward posture. A severe case of ankylosing spondylitis can make it impossible for you to lift your head high enough to see forward. Ankylosing spondylitis affects men more often than women. Signs and symptoms of ankylosing spondylitis typically begin in early adulthood. Inflammation also can occur in other parts of your body — such as your eyes and bowels. There is no cure for ankylosing spondylitis, but treatments can decrease your pain and lessen your symptoms.”

[ http://www.mayoclinic.com/health/ankylosing-spondylitis/DS00483 ]

  • It is interesting to know that AS is also known as Marie-Strumpell Disease.

The following is the description of AS by Cedars-Sinai Hospital:

“Ankylosing Spondylitis (Marie-Strumpell Disease)

Ankylosing spondylitis (AS) is a systemic condition in which the joints and ligaments of the back become inflamed and eventually fuse.

Symptoms

AS causes stiffness, usually starting in the lower back. Over time it may spread into the upper spine, causing joints and bones to become fused. This makes the spine rigid.
About a third of all persons with AS may have symptoms that affect other parts of the body besides the joints and ligaments, including ones affecting the heart and blood vessels.

Causes and Risk Factors

This condition tends to be inherited. It most commonly occurs in men between the ages of 16 and 30, but can also occur in women.

Diagnosis

Some blood tests can help identify that the symptoms are those of AS. MRI is used to diagnose the condition.  Some changes caused by AS only begin appearing over a period of 10 years or so.

Treatment

The earlier AS is treated, the better. Once joints fuse (become joined together and rigid), mobility won’t completely return even with treatment. Drugs may relieve the pain it causes.

Usually, AS is treated with:

  • Physical therapy to help reduce pain and stiffness and help preserve back mobility
  • Drug therapy. This includes over-the-counter drugs that relieve pain (such as aspirin, ibuprofen, naproxen and piroxicam). It can also include drugs that modify rheumatic diseases (such as sulfasalazine and methotrexate and corticosteroids like prednisone. Researchers are also looking at promising, new drugs, such as tumor necrosis factor (TNF) blockers etanercept and infliximab.”

[ Source: http://cedars-sinai.edu/Patients/Health-Conditions/Ankylosing-Spondylitis-Marie-Strumpell-Disease.aspx ]

I read that Johns Hopkins Medical Hospital is ranked #1 by US News for Rheumatology Medicine, and here is how they describe Ankylosing Spondylitis. I like the description by Johns Hopkins the best; they really get to the meat of the issue and describes not only what AS is, but how we AS’ers experience various symptoms. I have put a big “YES”, OR, I describe my personal symptoms next to their symptoms below.

Ankylosing Spondylitis

What is ankylosing spondylitis?

Ankylosing spondylitis (AS) is a type of arthritis that affects the spine. Ankylosing means stiff or rigid, spondyl means spine, and itis refers to inflammation. The disease causes inflammation of the spine and large joints, resulting in stiffness and pain. The disease may result in erosion at the joint between the spine and the hip bone (the sacroiliac joint), and the formation of bony bridges between vertebrae in the spine, fusing those bones. In addition, bones in the chest may fuse. The cause of AS is unknown, although researchers suspect genetics play a role. A gene called HLA-B27 occurs in over 95 percent of those with AS. However, some people with the HLA-B27 gene do not have AS.

Who is affected by ankylosing spondylitis?

AS is more common among young people, between ages 17 and 35, but it can occur in children and older adults as well. The disease affects two to three times more young men than women and it tends to run in families.

What are the symptoms of ankylosing spondylitis?

Symptoms of AS tend to occur and disappear over periods of time. The following are the most common symptoms of AS. However, each individual may experience symptoms differently. Symptoms may include:

  • Back pain, usually most severe at night during rest: YES!
  • Early morning stiffness: YES!
  • Stooped posture in response to back pain (bending forward tends to relieve the pain): A LITTLE BIT.
  • Straight and stiff spine: YES! (Updated 13 January 2017):  More flexible the more I move and stretch.  
  • Inability to take a deep breath, if the joints between the ribs and spine are affected: YES – ALL NIGHT LONG MOST OF THE TIME, WHEN THE PAIN MEDS ARE NOT EFFECTIVE!
  • Appetite loss: SOMETIMES.
  • Weight loss: I DON’T GAIN WEIGHT!
  • Fatigue: ALMOST ALL THE TIME!
  • Fever: NO, MY BODY TEMP IS NORMALLY BELOW NORMAL.
  • Anemia: NOT THAT I KNOW OF.
  • Joint pain: ALL THE TIME!
  • Mild eye inflammation: ABOUT ONCE OR TWICE A YEAR SOMETIMES, NOT MILD, BUT MAJOR DAMNED PAIN OF THE EYEBALL – THIS EYE DISEASE IS CALLED IRITIS!
  • Organ damage, such as the heart, lungs, and eyes: PROBABLY SOME EYE DAMAGE OVER THE YEARS DUE TO RECURRING IRITIS. NOT SURE ABOUT DAMAGE TO OTHER MAJOR ORGANS.
  • Skin rashes: I ALSO SUFFER FROM ECZEMA ON MY HANDS AND FEET, WHICH IS HORRIBLE—SOMETIMES WHEN I WAKE UP IN THE MORNING, or the MIDDLE OF THE NIGHT, I WILL DISCOVER THAT I HAVE SCRATCHED MY SKIN SO FEROCIOUSLY DURING THE NIGHT THAT I HAVE RIPPED MY SKIN OFF AND IT IS A BLOODY MESS: ECZEMA is NO fun.
  • Gastrointestinal illness (such as Crohn’s or ulcerative colitis): NO CROHN’S DISEASE – THANK GOD!
  • (Updated and Added, 13 January 2017):  PERIODONTITIS!  YES!  Studies show a connection between Ankylosing Spondylitis and Periodontitis.  I have lost significant jaw bone to this disease—it’s just not there anymore!  Here is the conclusion to one recent study:

“This study succeeded in revealing an association between AS and chronic periodontitis, thus adding large-scale population-based epidemiologic evidence to the body of knowledge surrounding this association. After adjusting for socioeconomic factors, we found AS patients to be 1.84 times more likely than controls to have had a previous diagnosis of chronic periodontitis,
with no significant difference being detected after stratifying by sex. We also found the association between chronic periodontitis and AS to be attenuated among chronic periodontitis patients who underwent either a gingivectomy or periodontal flap surgery (OR 1.70).”

(Source: Association Between Ankylosing Spondylitis and
Chronic Periodontitis A Population-Based Study
Joseph J. Keller, Jiunn-Horng Kang, and Herng-Ching Lin).

The symptoms of ankylosing spondylitis may resemble other medical conditions or problems. Always consult your doctor for a diagnosis.”

[ Source: http://www.hopkinsmedicine.org/healthlibrary/conditions/adult/arthritis_and_other_rheumatic_diseases/ankylosing_spondylitis_85,P00045/ ]

Those are some of the BEST descriptions from medical websites that I have discovered thus far.

MY CURRENT LIST OF INJURIES OR MEDICAL CONDITIONS CAUSED (MOST ASSUREDLY) BY ANKYLOSING SPONDYLITIS :

1: Fractured Lumbar Spine (2 places), leading to Spondylolisthesis, leading to 10-hour Spinal Fussion surgery, leading to nearly one year recovery.

2:  Sacroiliitis.

3: Compressed Cervical Disks.

4: Alveoloplasty due to Periodontitis, due to AS.  Would need some serious bone grafting to fix my jaw bone.

5:  Osteoporosis.  (Study of Bone Mineral Density in Patients with Ankylosing Spondylitis, by Hatinder Jeet Singh, Kaur Nimarpreet, […], and Shesh Prakash).

6: A kind of Pigment Dispersion on my eye’s lens, causing some eye damage (visual impairment of sorts), caused by Chronic Iritis.

7:  RA in other joints.

8: Depression  (contributed to by Ankylosing Spondylitis).

___

How is it for Spondy’s in Real Life:

Medical descriptions are fine, but how does AS affect a Spondy’s life, that is the real important question that most people do not, or cannot even comprehend unless if they endure the pain of AS.  My “real-life” list of ‘How AS affects a Spondy’s Life?’, you would have just read in the above section.

AS is known as the ‘Unseen Arthritis Disease’:

You may be asking, “What is an unseen disease?”

Let me tell you, if you look at the majority of AS patients, they probably seem reasonably normal on the outside, just like other people on the street with good health.  This being true for so many AS’ers, it is even more difficult for people to understand the trials and tribulations that AS patients go though.

If you will allow me to make a fruit analogy, this is what I would say: The outside appearance of many Spondies is similar to the outside skin of a diseased mango:  the skin usually looks great!  “OK, Nawfal, where are you going with this – You say Spondies look like diseased mangoes!”  You exclaim with obvious frowns, outrage, and skepticism.

Let me continue, all right, geezzzzzz!  Give me a chance to explain.

Most mangoes look great from the outside, it is only when you inspect the inside, cut it open, that you discover if it is good or not. I believe that parasites, fruit fly eggs, etc. infect/infest mangoes, during the flowering stage of growth, thus, the wormy thing is inside the mango as the fruit grows. Thus, the skin of the mango may look quite appetizing; however, when you cut it open, you may discover that things are very wrong with the mango. Do you see the connection? Diseased Mango…Ankylosing Spondylitis! 

We may look GREAT, or OK, on the outside, but inside we may have many medical problems to deal with caused by AS. 

Well, I did my best to make the analogy…maybe some will understand what I’m attempting to get across here.

Some AS patients have very obvious deformations in their joint-bone connections – they fall into the obvious / seen-arthritis category.

There are some very serious consequences left out by the hospital websites that the average Joe (or Jane) would not realize about AS and its effects on a patient.  These issues are often overlooked when discussions come up about Ankylosing Spondylitis:

  • Extreme and Chronic Depression! No amounts of fairy-dust or positive affirmations are going to make Ankylosing Spondylitis go away: As the Mayo Clinic’s definition clearly stated, there is no cure for AS.  AS can make a person feel extreme pain and a sense of hopelessness, which tends to lead to depression.  There are only methods, exercises, medications, and home remedies that may, or may not help relieve the symptoms of AS.  However, if depression affects an AS patient, things for that patient can become very bad, especially if left untreated.
  • Does having a positive attitude help with AS? Yeah, it can—Why? Because AS symptoms gets worse with stress. If you are the “worrying” type of person, as I am, the stress of even basic things can overload the autoimmune system and that causes extra inflammation in the body, or at least, it seems to cause more inflammation and pain.
  • Symptoms also get worse when I eat certain foods that cause more inflammation in the body and I will list the foods that affect me the worst.
    • Potatoes: This includes French fries, baked potatoes, scalloped potatoes, any potatoes. I love potatoes but they do NOT love me!
    • Tomatoes: Especially raw from the garden tomatoes, V8 Juice, any tomato juice, tomato paste (this is really bad for my AS), and that is the reason I suffer more after eating pizza. Ketchup seems OK with me, and I’m not sure why, but it does not really affect me very much.
    • Yellow Dal: I love South Indian Dal with chapati, but I suffer major time after eating it. Red Dal is better for me.
    • Eggplant (Terung – in Malay language): I enjoy eating eggplant, especially in curries, but it does not like me.
    • CAULIFLOWER: I really like cauliflower, but it is one of the worst inflammation causing vegetables for me. CABBAGE is of the same degree of BAD for my AS.
    • Milk. Milk is not so good for my AS.
    • Shellfish also affects and causes inflammation in the body, but I can’t eat it anyway because I’m allergic to most shellfish, and those sauces derived from shellfish (e.g., clam sauce, etc.)

Having AS is not Cheap – this is another Major Issue NOT Often Tackled or Discussed!  The cost of having AS is not a symptom, but the high-cost of treating a life-long disease is a burden, and it is a consequence of having AS!

If you calculate the following formula, you will quickly discover that having AS is NOT a cheap disease to have:

  • AS is a life-long disease meaning that a Spondy needs treatment and medication for life, +
  • Spondies may have difficulty working like a healthier person does, so perhaps they have less income coming in, +
  • There are more costs and financial burdens of seeing specialist Orthopedic and Rheumatology doctors, often, +
  • Spondies need to have special MRI scans and X-Rays, +
  • Spondies need to have special and expensive blood tests done, +
  • Spondies need to see other specialists when associated diseases occur (i.e., When I have Iritis, I need to visit my Ophthalmologist.)

What is the sum of all that? It adds up to a WHOOP’ASS of financial burden!

So tell me, if a Spondy has difficulty during the normal working day, can not function in the ‘normal’ 9 to 5 work place, must depend on other creative means and talents for their financial resources, plus, they have to deal with so many medical expenses and problems, then doesn’t it add up to a lot of financial stress?  Yes, I’ll answer that one for you.

What did I mention earlier in this long note? Stress causes extra problems for a Spondy—MORE Pain!

Ankylosing Spondylitis is a very complex and unpredictable arthritic, autoimmune, seronegative spondyloarthropathy, degenerative joint disease.

AS not only affects many of the joints of the body, but it also can cause health problems with the eyes, heart, skin, bowels, and other vital organs.

It is a disease that affects not only the person physically, but it also takes a toll on the mental health of a Spondy. Some people are stronger than others are and can cope well, or at least, at a level where they can control the hopeless feelings that many people feel who suffer from chronic pain.

I have taken so many medications over these 33 years that it could cause other problems as medications are filtered through other vital organs, other AS’ers may also have this situation.

Also, some, if not many, Spondies must deal with the stress of financial-pain, and this is a reality for many with AS.

Having fun and being social is even difficult much of the time, for example, going to the movies and sitting for a simple one and a half hours, can have such a painful after effect, that I do not often want to go to the movies. ONLY if it is a great movie like LOTR (Lord of the Rings), then I will go and sit through that, and then the pain of sitting there for so long, is somewhat worth it.

I didn’t even touch on sports and exercise yet!

If a Spondy has access to a swimming pool, then swimming is good exercise, that is, if they want to risk getting infected by the masses of bacteria that most public swimming pools are infected with.

Yes, this will shock you and you may not realize this, but there was a recent study done, asking adults, “Have you peed in the public swimming pool?” One in Five adults ADMITTED to peeing in the public swimming pool occasionally! 70% of adults do not shower before entering the public pool. That’s only the ones that admitted to it – the percentage is probably much higher for both issues (peeing and not showering)!

Moreover, you know kids…I won’t even go into that category and their behavior at public swimming pools…I don’t even want to think about it!

Most people probably have the idea that the chlorine will kill the germs and bacteria in the swimming pool: chlorine will kill the first few batches of bacteria, but as more and more bacteria is added to the pool, the chlorine is overwhelmed and becomes very much less effective. So, don’t believe you are safe in public pools. [ Source: http://www.dailymail.co.uk/news/article-2152700/One-FIVE-adults-urinate-swimming-pools-70-dont-shower-diving-in.html ]

Any sport that is too strenuous or contact-driven, is probably not going to be very right for Spondies, at least, that is my take on sports and AS.  Because inflammation causes many joints to deteriorate, and bones fuse together, many Spondies are not so flexible.  This joint and over all body stiffness is dangerous. It is a matter of Physics, really. Skyscrapers are designed to flex a little to deal with outside stresses; bridges flex for the same reason; super tankers have to flex too, due to the stress put upon it by the ocean. Things that don’t flex well, like deteriorated joints in a body, and areas where bones have fused together, or are partly fused, end up breaking, or fracturing when hit with a certain force. That is why many Spondies experience fractured bones due to accidents that many healthy people would not normally be affected by as badly.

Fracture characteristics of patients with ankylosing spondylitis

“Ankylosing spondylitis mainly affects the sacroiliac joints, spinal bony paraspinal soft tissue and peripheral joints, causing waist, back, neck, hip, hip pain and joint swelling, severe ankylosis and spinal deformity, ankylosing inflammation associated fractures are common in patients, mainly in the following five characteristics:
First, patients with ankylosing spondylitis fractures occur in the chest at the junction of the lower cervical spine and neck.
Second, the cause [of] ankylosing spondylitis patients with fractures, can be a trauma that is relatively light, limb excessive stretching is the main mechanism of injury, the majority of the three-column fractures, and are prone to dislocation.
Third, Ankylosing spondylitis [patients’ bones] fracture easily [and are] complicated by nerve injury, cervical spine fracture associated with cervical spinal cord injury is more common…[and as well the thoracic spine fractures and associated nerve damage].
Fourth, spondylitis patients with vertebral osteoporotic cancellous bone bleeding associated with the fracture is more complicated by epidural hematoma after the fracture, which is easily one of the reasons resulting in nerve damage.
Fifth, mortality was higher in patients with ankylosing spondylitis fractures, usually caused by respiratory failure caused by cerebrovascular accident.”

[ Source: http://www.hbfd.org/bone-diseases/ankylosing-spondylitis-2/fracture-characteristics-of-patients-with-ankylosing-spondylitis.html ]

In other words, if you have Ankylosing Spondylitis, be very careful NOT to get into any collisions, contact accidents, or other trauma. Yeah, how do you do that? I’m not sure…but for one thing, I suggest being a good defensive driver. The other thing I suggest is developing and having a better “Situational Awareness.” Those are my two suggestions. Go out and enjoy life, but be aware what is going on around you at the same time.

  • Do NOT count on anyone else to understand your situation, even though we wish that were the case.

Me and My Photography…and AS:

For me, in my photography pursuits, and adventures, I often end up feeling depressed because it seems that each time I’m feel’en it. By “it”, I mean that I feel the pain and affects of the long AS battle in my body. I have the will to go out and photograph; however, my body is saying, “I’m going to kick your ass when you go out and photograph, so watch out!

Sometimes, the AS wins, and nothing happens with my photography. Other times, I muster myself, get my much-reduced gear into my camera bag, and then go out for a couple hours of happy photographing.

Yes, AS even affects my Photography, and that really brings my mood down.

I would love to take a lot more gear with me to photo shoots, but my spine can’t handle it: between the one or two hours of walking around, bending uncomfortably, and having to lug around photo equipment, I’m feeling like about 10-miles of really bad county road by the time I’ve called it quits!

When I’m working my photography, I have to work quickly and plan out the best course of action to get good shots in the limited time I know my body will allow me to be out photographing. It isn’t easy. It is damned hard. I’m sure other people with AS, in other professions or hobbies, will have similar experiences.

Let’s Wrap this UP!

I have come to the end of what I have to say for right now, and I have just started covering the main topics of Life with Ankylosing Spondylitis.

On one hand, I can say that there is absolutely nothing good about AS! It is horrible to the n’th degree! The fatigue that AS causes is unbearable most of the time. The fatigue alone causes such discomfort that I don’t do things that I would normally love to do. In my opinion, AS robs a person of so many things in life; or at least, it makes it so much more difficult to pursue things that is wanted or needed in this life.

On the other hand, I will admit that the “Will to Strive”, “Having to Suffer More to Get things Done”, and “Being Persistent”, these things build character. Thus, I guess someone could argue that having AS helps us Spondies build Stronger Character and thus, being Super Human to overcome to get things done and shoot through the pain to do it…these are positive things if looked at in this way. Maybe I am delusional!

I want to add this at the end here, and it is very important: If you know someone, especially someone you care about, who suffers from any sort of disease that causes chronic pain, please have some extra consideration and compassion for him or her. Help them out more often. Try to understand, at least a little, what people with chronic pain go through on a daily basis. Put yourself in their shoes, even for an hour or two, and you will certainly have a new-found respect for people who endure with chronic pain.

Oh…and I did not mention it yet, but I seem to have passed on this “wonderful” disease to my youngest daughter, who also has Ankylosing Spondylitis. Oh, yes, the joys of guilt and anguish knowing what my daughter may go through as she gets older and has to deal with AS. Knowing this, is the worst thing I have had to experience with AS: I would gladly endure twice the amount of pain if my daughter could be cleansed of this disease…but it doesn’t work like that now, does it.


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