Rheumatoid Arthritis – My journey into the light

It has been more than fifteen years, but I still remember every single day leading up to my Rheumatoid Arthritis diagnosis, and every day since.

Rheumatoid Arthritis is an auto-immune disease in which the body’s immune system mistakenly attacks and destroys the body’s own tissues, most notably the lining of the membranes of the joints, causing inflammation and crippling pain. The disease, if not treated, can result in joint deformity, bone erosion, infection and eventually an early death.

Rheumatoid Arthritis Symptoms

I arrived in Dubai in early October 2006, but it was still hot and humid and the world was in minor panic over the worldwide Avian Flu epidemic.

I fell ill within weeks of my arrival and after a few days I was taken to a South African doctor to get checked over. There were not many times in my life that I had been too sick to get out of bed (PS: that was my father’s criteria for staying out of work), but I felt fatigued and always felt very hot or very cold.

The doctor diagnosed bronchitis and prescribed medication that would both relieve the symptoms and heal the infection. By the time the course of antibiotics was completed, I still felt a lingering fever and tiredness.

I noticed joint swelling for the first time when I went to the gym one Friday afternoon, and found that I had difficulty closing my hand around the handlebar of the stationery exercise bicycle. A few weeks later the right forefinger joint closest to the palm was so painfully swollen that I paid a lunch time visit to a clinic close to the office. The doctor prescribed an anti-inflammatory pill and said it was probably caused by too much computer keyboard use.

That first Winter in Dubai was cold and wet. It even rained continuously for what seemed like a week. I was experiencing fever and pain in my left shoulder, but put it down to the AC vent across from my bed blowing cold air over me as I slept. Even when my right ankle started swelling, I put it down to the knock I received climbing out of the taxi on a wet and windy Cape Town winter’s night, six months earlier.

A few weeks later my left ankle started swelling and my feet no longer fit into any of my pretty high heeled shoes. All I could wear by then were the sneakers with the velcro fasteners that my brother had bought for me. The alarm bells started going off, but I still delayed going to the doctor again.

Rheumatoid Arthritis symptoms may include:

• Swollen painful joints – the disease usually manifests in the smaller joints of the fingers and toes first. If left untreated it can spread to the larger joints as well as organs.
• Stiff joints – usually worse in the morning upon waking or after prolonged periods of inactivity.
• Fever, fatigue and loss of appetite – hot and cold sweats and fevers are common.

Read more about Rheumatoid Arthritis here.

Rheumatoid Arthritis Diagnosis

One day the senior administrator called the driver and told him to take me back to the clinic for an emergency appointment because I was walking like an old lady. A different doctor examined me this time, checking my ankles and hands and asked if I felt any other pains. I pointed to all the other places that ached and she recommended that I have blood tests that same day, and come back for an appointment with a Family medicine physician.

I made the appointment and the Physician informed me that after reviewing the test results she suspected I have an auto-immune disease, but would have to order other tests to confirm. More blood tests and then the wait for the results… At that point I had no idea what to think or what to expect and lived in a kind of limbo, until the phone rang one night after I had already settled in bed.

The doctor’s voice was very serious and almost sad. The only thing I remember is that she wanted me to see a Rheumatologist because the blood tests indicated that I had some kind of auto-immune disease but were not conclusive. I would need to have further tests to determine whether it was rheumatoid arthritis or something else.

All I could think of was: ‘I will probably never be able to have children’. I was nearly 35 at the time and had no actual prospects of marriage, but it still hit me like a ton of bricks. I had received a proposal of marriage a few months earlier, but at the time I felt so sick and even without knowing the cause, I knew I could not accept and subject a husband to whatever future my unknown ailment held for me.

I wanted to cry but the tears would not come. I felt like someone had reached into my chest and closed a frozen fist over my heart. That night I could not even bring myself to speak to my closest friends. All I wanted was to be alone to wallow in my pain and suffering, both physical and emotional.

I went to the appointment with Rheumatologist No. 1, who was brusque and explained that he would do tests to determine if I suffered from Lupus or Rheumatoid Arthritis. Either way, he said, I should expect to have my life expectancy reduced by at least 15-20 yrs, and would almost certainly not live to the ripe old age of 80. I looked him in the eye and with a straight face I replied ‘that’s ok, in my family we die young anyway.’ The shocked look on his face was priceless!

My father passed away before his 59th birthday, and my mother before her 69th birthday (May Allah have mercy on their souls and grant them the highest paradise). My paternal grandparents died when they were in their early forties, and my maternal grandmother was still reasonably young. Two aunts actually lived past their eightieth birthdays, but between the renal dysfunction and diabetes that seems to run in both paternal and maternal lines, I had never actually considered a ripe old age.

Waking up on every given day is a blessing and gift from Allah, not a promise of longevity.

Rheumatoid Arthritis treatment

Rheumatologist No. 1

Days after the diagnosis of Rheumatoid Arthritis, I started on the first of many treatment regimens with Rheumatologist No.1 that failed to relieve my physical pain or stop the advance of this degenerative disease.

I was placed on numerous Disease-modifying antirheumatic drugs (DMARD’s) that are supposed to slow the progression of the disease and the resultant damage to joints and soft tissue:

• Methotrexate (a cancer drug)
• Hydroxychloroquine (Plaquenil)

When those did not work I was put on a Biologic immunosuppressant that works by suppressing the immune system and to reduce the symptoms and reverse the course of the rheumatism.

• Etanercept (Enbrel)

When the pain and inflammation were really bad he put me on Corticosteroids, synthetic versions of chemicals that the body produces. The use of Cortisone and Prednisone resulted in what is commonly known as ‘moon face’, swelling around the chin and ears.

After more than a year had passed since I first started treatment for Rheumatoid Arthritis, I was still not responding to treatment. My left knee hurt so much that I could not walk without hobbling. When I entered the senior administrator’s office at work she took one look at me and said that I was as grey as the office walls. She warned me that if I did not make an appointment with a different Rheumatologist immediately, she would do it herself. I had an appointment with Rheumatologist No.1 the following day and promised to ask him to refer me someone else.

Later that morning I looked up the Rheumatologist at a different hospital and actually made an appointment that very same day. A second opinion could not hurt and I had nothing to lose. When I reached the hospital for my appointment with Rheumatologist No.1 the following day, everyone kept offering me a wheelchair, from the hospital security at the door, to the nurse who saw me enter the facility.

When the doctor laid eyes on me, I think he realised that I had reached the end of my tether. He looked at me and said ‘I think you need to get a second opinion. It may not make any difference, except to give you some peace of mind about the current treatment’. I replied that I would do that and asked if there were any doctors he would recommend. His top choice was the one I had already made an appointment with and he provided a medical report to explain the protocols he had already used.

Rheumatologist No. 2

I went for the appointment with Rheumatologist No. 2, who immediately recommended a completely new treatment regimen as well as a monthly intravenous infusion. Later that same week I started the first stage of the DMARD treatment, consisting of a cocktail of two pills non-biologics taken morning and evening as well as a monthly biologic intravenous infusion.

Within two days of starting the new tablets, I already felt the difference. By the fifth day I stopped limping. Getting out of bed in the morning was still hard, but did not feel like quite such a herculean task any more.

Rheumatologist No. 2 commenced the intravenous infusions when he returned from vacation a month later. I stayed on this combination of pills and infusion treatment for three years, and much of the pain and inflammation subsided during that time, Alhamdulillah. I had a life again.

• Leflunomide (Arava) – this comes with a warning to not take it before or during pregnancy
• Sulfasalazine (Azulfidine)
• Abatacept (Orencia)
• I was also put on a Non-steroidal anti-inflammatory drug (NSAID’s) Diclofenac (Cataflam) to reduce inflammation, as needed.

Rheumatologist No.3

Rheumatologist No.2 moved and opened his own clinic but since my medical insurance did not extend to their clinic, I stayed on and became the patient of Rheumatologist No.3 who took his place at the hospital.

When their clinic was listed as a service provider I moved to the Rheumatology clinic.

Rheumatologist No.4

After nearly 4 years on the Orencia treatment it became less effective as my immune system grew accustomed to it.

I had been placed under the care of Rheumatologist No.4 at the clinic and he recommended a different infusion called Tocilizumab (Actemra). Although the Actemra was effective and diminished the inflammation and pain, it seemed to be happening at the expense of my liver.

My cholesterol levels and body mass were increasing steadily, despite my relatively junk food free lifestyle. After two weeks on the cholesterol medication that he prescribed, blood tests revealed that my liver was toxic and I stopped it immediately.

After a battery of tests by an Internal Medicine Physician who agreed to check whether any other system or organ was compromised, I was called in to discuss the results. At our initial meeting I had discussed my medical history as well as that of my family. When he looked at the results and looked at me, then looked at the results again, shaking his head in disbelief, I was not sure what to think.

Then the Physician said ‘I don’t understand this. There is nothing wrong with you except Rheumatoid Arthritis (and the high cholesterol).’ I said ‘Alhamdulillah! You sound disappointed’. He said that with my family history of diabetes, renal failure and hypertension he couldn’t understand how after all the trauma my body has been through with the arthritis and subsequent inactivity and weight gain, I only had Rheumatoid Arthritis and Vitamin D deficiency.

Rheumatologist No. 4 recommended a treatment that was extremely expensive and not covered by the medical insurance and I could not afford it, so we parted ways. I was able to get an appointment with Rheumatologist No. 3, but it would be nearly three months after my final infusion before I could see her.

During that time I started a journey that would change my life.

Rheumatoid Arthritis diet

During my treatment with Rheumatologist No. 4, he often emphasized that fat cells were akin to being Inflammation factories. During the time while I was waiting to get an appointment with Rheumatologist No. 3, I came across random weight loss programs and my brother recommended a Low Carb, Healthy Fat diet.

I started a hormone free calorie restricted weight loss programme that limited daily calorie intake to 500 calories per day. The calorie restriction went hand in hand with daily doses of supplements and amino acids to stimulate liver function. The 3 phase diet aimed to reset the metabolism, stimulate the hypothalamus to release hormones that suppresses appetite and release fat stores. Whether it actually did all of that is questionable but I benefited in other ways.

• The low sugar and low starch diet eliminated most processed carbohydrates from sugar, wheat and other grains
• Minimised dairy intake
• Allowed me to identify inflammation inducing foods and food sensitivities

By the time I had my appointment with Rheumatologist No. 3 I had been off all meds for Rheumatoid Arthritis for around 3 months. However, I was still feeling fine and had not required anything more than an occasional anti-inflammatory.

She indicated that the medication takes some time to be cleared out of the system and that she would start me off on one of the very first Disease Modifying Drugs (Plaquenil) that I had taken in the first year after the diagnosis, to control any symptoms. I used this successfully for nearly two years until a flare resulting from a viral infection caught while on a business trip required a stronger treatment that I am still taking.

The low calorie diet was unsustainable and I would not recommend following such a rigorous calorie and nutrient restricted diet to anyone. However, if you do suspect that you have food intolerances or sensitivities it would be advisable to visit a food allergy specialist who can advise on an appropriate elimination diet or other type of allergy testing.

Food Sensitivities

Since doing the low calorie elimination diet I have learned what foods cause an inflammatory response after consumption. I have become more aware and attuned to my body’s responses and have noticed that in some cases the response is immediate, while in others it takes a bit longer to feel the aches and pains from inflammation.

The usual triggers are foods containing the following:

• Store bought gluten rich refined flour products
• Processed meats with artificial preservatives and additives
• Fast foods with with artificial preservatives and additives
• Refined sugar
• Starchy vegetables like corn, potatoes and sweet potatoes
• Legumes including lentils, peanuts and chickpeas
• Grains like wheat, kamut, freekeh
• Seeds like quinoa

Anti-inflammatory foods

In addition to the Rheumatoid Arthritis medication I have found the following supplements and anti-inflammatory foods to be essential for my day to day well-being and immune system function:

• Turmeric: Anti-inflammatory and anti-oxidant
• Ginger: Anti-inflammatory, anti-oxidant, anti-bacterial
• Omega 3: Anti-inflammatory
• Milk Thistle: Anti-inflammatory and anti-oxidant for natural liver detox
• Green tea: Anti-inflammatory and anti-oxidant
• Olive oil, coconut oil: Anti-inflammatory
• Milk Kefir: Probiotic

Some of my favorite recipes are the Easy Homemade Granola, Greek Yogurt and Granola breakfast bowl and Almond and Coconut bread

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Rheumatoid Arthritis pain and suffering

My first visit home after my Rheumatoid Arthritis diagnosis was probably the turning point in my life. I stepped off the aeroplane into the frigid Spring air in Cape Town, and I felt it slice through my flesh and bones. After a twelve hour flight my joints were stiff, my knees and ankles swollen and inflamed, and my shoulders felt as if they would pop out of their sockets. I struggled down the stairs to the tarmac (there were no airbridges to the Cape Town International Arrivals terminal back then) and finally after what seemed like a lifetime, I cleared immigration and customs and was reunited with my family.

My mother had no idea how bad it had been over the previous ten months because I never complained about being sick or fatigued when I spoke to her. That day I was so exhausted that I had a bite to eat and went straight to bed, even though it was Eid day and my mother had guests coming and going all the time. I slept for what seemed like hours, and in the early evening someone came to wake me. My friend whom I had not seen since I went for the interview for the position in Dubai, had come to visit.

It took me forever to get out of bed and then, when I finally went inside to meet them, I stood at the door like an idiot and could not say much aside from murmuring greetings and best wishes for Eid. My mother was appalled and scolded me for weeks after… but I couldn’t explain the fatigue, the mind numbing brain fog or the burning pain I was experiencing in every cell in my body.

I can’t remember what my brother and I were talking about one day when I mentioned that I was in too much pain and not interested in going out. He told me that everyone experiences pain and that I should take a pain pill and stop complaining about how I could not do this or that. He said that had suffered from back pain after the hit and run, and did not whine about it all the time.

I realised at that moment that I was alone with my disease and my pain and suffering. I promised myself in that shocked breath, that I would never ever ask anyone for assistance or accept help from anyone, if my own brother could say this to me. Even now it brings me to tears, but I realised that my family could not empathise with the suffering from a disease that they did not know about or understand.

Rheumatoid Arthritis Pain Management

Pain pills do not help for my joint pain from Rheumatoid Arthritis so I never take them, not even for a splitting headache. In the early days the fatigue and morning stiffness meant that some days getting out of bed required all the physical and mental strength I could muster. Sometimes getting dressed felt like pure torture, when lifting my arms seemed to require as much strength as lifting a car.

There were days when my shoulder joints felt like the bones were grinding against each other. When brushing my hair was so hard, that I just did not bother.

That is the benefit of covering one’s hair in public, there are no bad hair days ever 🙂

There were days when simple things like going to the toilet and cleaning myself were so difficult and painful that having all my front teeth punched out seemed much more preferable. I was never more grateful for the shattaf or hand sprays that are installed in all toilets in the Gulf countries.

After twelve excruciating months and three or four different protocols, all of which promised horrific and life threatening side effects, and none of which reduced the inflammation or pain, I had no more fight left in me.

I reminded myself every day that it is detestable for a Muslim to wish for death because it is better to live a long life engaged in righteous good deeds, worshipping and repenting to Allah for sins. Instead of feeling sorry for myself I prayed in the early hours of the morning that this would be a means of purification for me.

The only thing that kept me going on even the worst days was reminding myself of a hadith of the Prophet Muhammad (Peace and Blessings upon him) regarding afflictions. I printed it and put in on the wall opposite my desk, where I saw it every time I looked up from my work.

Lessons Learnt

During the early days of my illness when I was fatigued and feverish I received a gift from a friend. It was a pdf copy of the English translation of the Riyad as-Salihin (The Gardens of the Righteous). It is a collection of verses from the Quran with supplementary narrations from the Prophet of Allah, compiled by Imam Al-Nawawi from Damascus.

In the Book of Miscellany is this narration that opened my eyes to the blessing contained within my affliction:

Abu Yahya Suhaib bin Sinan (May Allah be pleased with him) reported that:

The Messenger of Allah said, “How wonderful is the case of a believer; there is good for him in everything and this applies only to a believer. If prosperity attends him, he expresses gratitude to Allah and that is good for him; and if adversity befalls him, he endures it patiently and that is better for him”.

In the years since I came to Dubai I struggled to understand what Allah’s purpose was for me. From the application to  the interview process for the exchange program that brought me here, it seemed that no matter what obstacles arose, He made a way to overcome them. I realized that it had to serve a greater purpose than me being alone in a foreign place and getting sick.

And then like a blind person seeing for the first time, it dawned on me. Our Creator does not benefit from our suffering. Our Creator does not need us to be grateful for pain and suffering or to learn self-sufficiency and self-assurance. Those are the gifts that we receive by placing our trust in Him and to rely on Him alone in the moments of joy as well the depths of the greatest anguish and despair.

The 17 years that I have spent in the UAE have made it possible for me to do things that may not have been possible otherwise. I have learned much about myself and how I relate to the world and how the world relates to me traveling solo as a Muslim woman. I have learned what my tolerance is for pain as well as how to struggle through it. I have eternal gratitude for the souls who have made this journey bearable.

Alhamdulillah always and for everything.

 

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