One-sided throat pain

This pain in my throat has been on-going for a whole month now. The antibiotics had not helped at all.  I think I have low grade fevers too. Am not sure what's the problem and have called up my specialist.  Apparently he is busy and can only return my call on Thursday.  

I've done some google searches on the side effects of sulfasalazine, which I take a dose of 3000mg a day.  One of the websites www.arthritisresearchuk.org has a brochure on sulfasalazine, and it is indicated that I should tell my doctor immediately if I experience any of the following while on this medication:

- a sore throat

- a fever

- any other symptom of infection 

- unexplained bruising

Right now I'm still in the dark about wht could be the issue, but I'm really looking forward to the call from my doctor.  Hopefully, he has an answer for me.

P is for Pain?

That time of the month and the pain in my upper back accompanies it.  My neck is a little stiff too.  And I've been down with throat inflammation for 2 weeks now.  Saw the GP yesterday, who thinks that my auto-immune condition impacts my immunity too.  My throat inflammation is caused by a bacterial infection that my body seems incapable of fighting and getting rid off.  So I'm on a 7 day course of antibiotics.  Let's see if that works.

Shopping

I went shopping yesterday. Walked around for hours, bought lots of stuff and carried heavy bags around. 

Woke up with intense stiffness and pain.

I think that's the trigger? Carrying heavy stuff.

Also, I've been having a painful inflamed throat for 2 weeks, with no accompanying symptoms of cold, cough, flu. Wonder if it could be something? Hmm...

Off Arcoxia

Today is my third day off Arcoxia.

"ARCOXIA belongs to a group of medicines called Coxibs. It works in a similar way to traditional anti-inflammatory medicines, known as Non-Steroidal Anti-Inflammatory Drugs (NSAIDs), by blocking the production of substances that cause pain and inflammation."

Source: http://www.news-medical.net/drugs/Arcoxia.

aspx

The aches and pains came back slowly throughout the day. If I had to describe it, it is almost like a flower of pain blooming and blossoming from the middle of my back and slowly spreading out to the outer parts of my back.

I didn't realize how bad it was till I was in Yoga Therapy class this evening and the happy baby pose reduced me to tears from pain.

Can't decide if I should get back on it, since I did some research online and discovered this drug isn't even approved for use in the US.

"Note: Arcoxia has not been approved by the FDA for the U.S. market. The manufacturer of Arcoxia received a non-approvalable letter from the FDA in April of 2007. This non-approvable letter was due to safety concerns of an increased risk of cardiovascular events (including heart attack and stroke) and questions on the benefit-risk ratio in patients taking Arcoxia. Merck will continue to market Arcoxia outside the United States."

Source: http://www.drugs.com/arcoxia.html

On the bright side, I hadn't been watching my diet since I was pain-free on Arcoxia.  This pain gives me the discipline to make a real lifestyle change. 

How Great is my God

Sunday, 1st December, saw me run my first half marathon of my life.  I hadn't trained since my flare up and I was completely out of shape.  My muscles ached a whole week since the 10km run I did on the previous Monday.

I met Team Sunrise, my training group from Wesley Methodist Church, at 6am at Vivocity.  I was pumped up because I have been pain free for a few weeks now and really looking forward to a good and successful run.

Throughout the run, I kept upbeat and each time I felt weary and wanted to give up, I remember the days that I could barely walk, my body wrecked with pain. That gave me new strength to keep going, because I am now blessed with mobility.  The song "Great is Thy Faithfulness" rings over and over in my head and I know that I can do all things through Christ who strengthens me.  God's mercies for me are truly new every morning.  I don't think I can explain enough how grateful I am to be able to be mobile and pain-free.  And to think, I could even complete 21km with relatively good timing of 2hours 39mins!  (Never in my life did I ever think that I can run for more than 2 hours non-stop! We breach our own limits and defy our own expectations all the time!)

To God be the glory, great things He has done!

It's results day

Today saw me at my follow up appointment at the specialist.  I got my blood test results and X-ray review done, and the doctor has confirmed that I am an Ankylosing Spondylitis sufferer, and NOT an early stage AxialSPA patient. 

My hip joints and vertebrae show abnormal signs of change, with my vertebrae showing visible signs of "growing".  That just basically means it looks like it's going to connect, what they call the "bamboo spine". My blood test results came back with high inflammation markers, with my inflammation number at 87, when the normal range is 30 and below.  

Thank God I'm still at a rather early stage and medicating should help fight the inflammation.  I'm on Salazopyrin, which, according to the doctor, is a biological disease modifying drug.  

Nevertheless, I remain optimistic and thank God for each pain free day!  I can still vividly recall the pain, stiffness and discomfort I suffered a month ago.  

In addition, doctor says I can continue running, and it has NO negative effects on me.  In fact, he says that it is BETTER that I stay active.  I'm pleased!

I'm prepping myself for a half marathon this coming Sunday. I had not trained for it since my flare up occurred in early September. It's my first half marathon and my goal is just to finish it! 

Did a 10km training session on Monday night and hope that will be enough for this Sunday's 21km race! 

Medication

4th November <Monday> saw me at the specialist clinic. I hadn't seen a specialist since 2007.  On this visit, the doctor tells me there has been development in the research of this condition, and there are 2 categories of Axial SPA.  It is the later stage of this disease with visible (via X-ray) scarring of the joints that it is called "Ankylosing spondylitis".  He thinks I'm at the early stage.  We had an X-ray done, but I will only know the results at my next visit with him on 27 November.

The doctor prescribes me with a whole lot of medication and I initially doubtful.  I didn't like the idea of pumping my body with drugs.  He explained to me that the anti-inflammation pills are supposed to fight the inflammation.  My body is attacking itself, the pills fight back.  Well, okay I guess... It's worth a shot. 

Since taking the pills daily, I have started yoga again (slowly and cautiously) and also did a short run (3.5km) just to see how my body reacts.  I miss being active so much, and I don't regret this decision to medicate.  But I do eventually hope to not be reliant on medication and heal through diet and lifestyle changes.

Define me Chronic

(Of an illness) persisting a long time or constantly recurring.

I checked up the dictionary on the meaning of chronic, because although I keep encountering this word as I try to educate myself on my condition, I don't think it really hit me on how long I should expect to experience this pain.  I was hopeful that my flare ups are occasional and go away in time.  I guess CHRONIC means I was wrong. 

I had wanted this post to be about my 12 day trip to Nepal, where I did 5 days of trekking on the Annapurna trail.  And how I managed it with my condition.  I can simply cut that short now just by saying I took 90mg of Acorxia everyday that I was in Nepal.  Yes, I pumped my body full of drugs just to achieve an enjoyable holiday.  It was completely worth it, to see the beautiful mountain ranges and flowing rivers.  But somehow, i feel that the drugs costed me more than it helped me.

When I came back home, I stopped Arcoxia completely.  Unfortunately, I fell sick also, complete with fever, sore throat, flu.  I'm not sure if it was the stoppage of Arcoxia or the infection, but the flare up that happened that weekend was completely unbearable.

It's been almost 3 weeks since then, some days are better than others.  I had been getting up earlier in the mornings because I get awoken by my pain, but I was okay with it, because I was getting up at 6am.  On the bright side, that just gave me more time to get ready for the day!  However, last night I was awoken at  3.15am and had such difficulty getting back to sleep because of the pain in every part of my back and neck.  Finally, after a long, hot shower, my pain eased a little and I was able to sleep again. 

Honestly, this is a constant battle. I don't think I fully understood the meaning of CHRONIC till now.  I just pray this understanding helps manage my expectations and my condition better. 

The Flare Up

Mornings are the worse for me.  Sometimes I dread going to bed, just imagining the pain I will feel in the morning when I get up.  I've learnt that running hot water down my back helps and eases quite a bit of the pain and stiffness. Thank God it gets better through the day.  

In the last post, I mentioned that I am currently experiencing my worse flare up.  It started sometime in August and it felt like backaches, and that's what I thought it was.  As time went on, the discomfort progressed into more pain and stiffness. I do yoga regularly, around 2-3 times a week and began to find it difficult to do yoga, as I was experiencing pains in my shoulder and upper back region.  My neck began to feel very stiff.

By September, my discomfort grew so great that I finally convinced myself of the need to see the doctor. (I admit I amquite stubborn   and don't like seeing doctors! That would just mean admitting that I am sick and I hate that feeling!)  I went to the local GP and had a consultation.  He was shocked that I tolerated the pain and discomfort this long, instantly proclaiming that I was currently experiencing a major flare up.  He prescribes me 3 doses of maximum strength (120mg) Arcoxia and 10 doses of 90mg Arcoxia.  I only realized how far i was feeling from normal, since I had tolerated the feeling the pain (and exhaustion, fatigue and low-grade fevers) to the point of being used to it.  

The pains came back as soon as I stopped the drugs for a couple of days. I was slated to go to Nepal for a mini adventure trip, which involved trekking, water rafting and jungle activities, at the end of September.  How will I make it?

Ankylosing Spondylitis

I wanted to start a blog to document my journey as a sufferer of Ankylosing Spondylitis.  For those who don't know, Ankylosing spondylitis (or AS) is a form of arthritis that primarily affects the spine, although other joints can become involved.  It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain & discomfort.  In the most advanced cases (but not all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes causing a forward-stooped posture.

AS can also cause inflammation, pain & stiffness in other areas of the body such as shoulders, hips, ribs, heels & small joints of the hands and feet.  Sometimes the eyes can become involved (known as Iritis or Uveitis) & rarely, the lungs and heart can be affected.

The hallmark feature of ankylosing spondylitis is the involvement of the sacroiliac joints during the progression of the disease, which are the joints at the base of the spine, where the spine joins the pelvis.  (Source: http://www.spondylitis.org/about/as.aspx)

I experienced my very first flare up when I was 22 years old.  I had just completed my university studies in Perth, Western Australia and was working as a waitress.  My Saturdays then had a nice routine to it, I would go for Ashtanga yoga at Leederville with a couple of friends, after which we would proceed for brunch.  It was one of those Saturday mornings that I got out of bed, and immediately fell onto the floor.  My right hip was in excruciating pain and I could not support my own body weight.  It was another few moments before I regained my strength and could walk again.  Within the same day, the pain came and vanished, and I did not encounter another episode for a few years.

I suffered my second attack when I was 25.  I was struck down with massive inflammation in my sacroiliac joints.  By this time, I was working a full time job in a bank and had to take a whole week off from work as the pain I was experiencing rendered me immobile.  This was when I went to see the rheumatologist and got diagnosed with Ankylosing Spondylitis.  Statistically, this disease happens to male patients between the age of 20-40.  I wondered what were the odds of me, a 25 year old healthy female, getting this condition?  I could not accept this diagnosis.

However, I had a painful bout with what I thought was sore eyes last year.  My left eye was red, swollen, teary and photophobic.  My vision was completely unclear.  I went to the GPs and the eyedrops they prescribed only made my eyes worse.  A visit to the eye specialist and I diagnosed with iridocyclitis, which is an inflammation of the iris and a condition that could occur in conjunction with AS. 

In June this year, I had a second flare up of the iris and I am currently suffering from the worst flare up I have ever encountered.  I am now dealing with the daily pain in my sacroiliac joints, lower back, upper back and neck.  It hurts me to stand up after long periods of sitting still, and I suffer the most pain in the mornings when I wake up.  I am now unable to turn my neck full rotation and unable to see behind or above me.  I experience a tightness in my chest and breathing difficulties as my ribs are not expanding as much as it used it.

But regardless of this, I am keeping my faith.  "I will lift up my eyes to the hill - from whence comes my help?  My help comes from the Lord who made heaven & earth.  He will not allow your foot to be moved; He who keeps you will not slumber.  The Lord is your keeper."  Psalm 121:1-5 (NKJV)

I have also committed to taking active steps in helping myself, staying active through yoga and swimming.  In addition, I will change my diet to remove inflammatory foods and include ingredients that help to battle inflammation.

This blog will document the struggles I have with this disease, changes I make to my lifestyle and I hope that it will help fellow AS sufferers out there.