I could not sleep one night. Some disturbing and really complicated thoughts were swirling inside my head. Out of the blue, I was having a negative emotional flood. I was suddenly feeling very sad and down and I simply could not explain how these emotions suddenly came about. It was just one of those sleepless nights.
Stepping out of darkness into the serenity of my quiet living room, the clock showed 4:00am in the morning. I realised I had not been having much sleep that night. I knew that I have more important thing to do right then. I needed to figure out what was the disturbing emotion all about. As I pondered with my head buried between my legs, I couldn’t help but notice the nodules on my feet. I sat up and looked around my body. Then the protruding bones on my wrists caught my eyes.
Almost immediately, tears came streaming down my cheeks. I knew exactly what was wrong with me. I was sad about my RA and the obvious signs that it left me with. I wasn’t a perfectionist in life and I do not expect myself to be perfect in any sense. Not only my hands do not look normal, they do not feel normal anymore. They are in such burning pains all the time and now, my wrists are in such a bad shape that I have lost strength and my full range of motion. This is a picture of my hand and the obvious sign of degeneration of my joint from rheumatoid arthritis.
As I cried, I realised and regretted what I have done wrong in this whole process. I was naive to not understand this disease enough to obliviously delay necessary treatment and medication for RA. Yes, you have probably guessed it. I was reserved about medication and the excessive use and reliance on drugs for treating my RA. I was convinced that without the toxic side effects of these medications, I could be healthier and I could heal myself the natural way – I will do exercise, eat healthy and take supplements to nourish my body. I was also too keen to get pregnancy again (after my miscarriage) and that explained why, I needed to make sure that my body was not poisoned by these drugs.
I was not fine at all, for that whole time. The degeneration happened too quickly, and I meant a short 2 to 3 months. Never did it occur to me that my ignorance carried a life-altering consequence; a price I have to pay for delaying treatment and receiving appropriate medication. I can imagine my hands and wrists would probably be saved if:
1) I am not be in denial or afraid of consulting other RA patients and doctors on anything RA
2) I get an in-depth understanding of the chronic nature of this disease
3) I accept and receive both conventional medicines and alternative treatments at the same time
This is my real story for not commencing the necessary medication at earliest possible. My delay had caused damages to my wrists joints and with these damages, I have lost a great deal in life – I can barely carry my younger boy as his weight is quickly catching up that of his sister’s, I have to give up driving because my reflexes have slowed; and I also turned away from my favourite anaerobic sports because they demand strength and flexibility that I have now lost. Before bad consequences happen, get the necessary consultation and help quickly. Do not repeat the same mistake I had once made in the past.
If my personal encounter is not convincing enough, I have rationalised below some common reasons why many RA sufferers are delaying treatment or seeking for help, and why they must NOT do so:
1. You are hoping to get immediate reliefs from holistic or alternative treatments
Holistic or alternative treatment have reported to have helped many RA sufferers out of this debilitating condition and like myself, it is totally understandable that you wish to jump on this holistic bandwagon. But know this, RA is an autoimmune disease, one that experts cannot find a cure for because the root causes of this disease are unknown. Because of the degenerative nature of this disease, it is sufficient to cause major damages to your joints which can potentially lead to deformity. You may also risk the disease attacking other joints one after another and eventually, within a short period of time, you may end up on wheelchair for as long as you know.
Researchers have indicated that treatment must not be taken lightly and slowly because any delays have known to be determinants of whether you can remain productive or end up like 25% to 50% of the patients who are unable to work within 10 years of the disease onset. In other word, the implications of the delays are leading to unnecessary disability, job losses and shortened life expectancy.
Opinion: Receive both conventional medication and alternative treatments side by side. Alternative treatments rarely come with side effects and do not normally interfere with orthodox drugs administration.From a holistic perspective of treatment, there is no convenient one-size-fit-all cure for RA. The causes of RA onset for each RA patient are deemed individual and different from the other; therefore the treatment regime needs to address the condition from a whole body perspective. Moreover, natural healing has always known to take time, patience, perseverance and endurance for benefits to effectuate.
For these very reasons, it is wise to apply conventional medications to alleviate pain and swelling while controlling the progression of the disease; at the same time, tackling healing holistically which often take months to years.
2. You do not suspect that you are actually suffering from Rheumatoid Arthritis
Another root of delay is a widespread lack of knowledge. People with symptoms do not recognise that they may be suffering from the disease, let alone understanding the dire consequences of delaying a doctor visit. It is so common to dismiss a certain pain as acute, thinking that they have been typing for too long or they have overdone in gym.
On top of that, sometimes, even if you seek your doctor’s consultation, your doctor may not be able to diagnose the symptoms as ones of RA. It was reported by the Public Accounts Committee in a report that the average time it takes to diagnose someone with RA has not dropped since 2003 as both patients and their GPs do not recognise the symptoms.
The government can certainly launch a public education campaign to bring awareness of the RA condition, emphasizing the chronic progressive condition and GPs need more training on this disease, particularly highlighting possible symptoms and prompt referrals of such patients for immediate treatment. But from a patient’s point of view, what can be done?
Opinion: Firstly, do not ignore first sign of pain and keep it under close supervision. Studies have also shown that the majority of injuries and pains will resolve themselves in about 4 weeks. If your pain persists even after self treat with OTC painkillers, then it is a sign that a doctor’s visit is unavoidable. A pain that is lasting for at least 3 months will be known as chronic pain. If your pain negatively affects your ability to function properly and tends to increase over a period of weeks or months, you must talk to your doctor to discuss your symptoms without further delays.
Secondly, perform a blood test. Researchers from University Hospital in Umea, Sweden, have identified various factors, including cytokines (proteins capable of regulating inflammatory responses) and cytokine-related factors, the levels of which all rise prior to onset of RA, even before they start to feel the pain. Diagnosis of the illness can be difficult as symptoms can typically start off mild but with the ability to identify elevated levels of these proteins before symptoms of the disease occur will allow an individual and doctors to take preventive measures immediately to enhance the person’s quality of life.
3. You are scared of the side effects of RA medications
Someone just said to me: After reading the pharmacy sheets listing all possible side effects of the medications that I take for RA, I can’t help but wonder if I’m actually trading one disease for another. Is it possible that I’ll be better off skipping these medications and take my chances that my RA may remit?
For RA patients, side effects of medication are again an understandable worry. No medication is completely safe and free of any side effects. Side effects can sometimes be violent and often interfere with other bodily functions in an undesirable manner. Before you wean yourself off medications totally, give a serious think about the benefits versus harms of untreated RA. From my own experience, because RA is a chronic and progressive illness, the benefit of drugs may outweigh the dangers of its side effects. Medications can ease pain and prevent or slow joint destruction.
Opinion: Do not risk deformities. Once a deformity happens, it cannot be reverse. With toxins left behind by the medications, you can always find means to detoxify yourself of these at a later stage when your RA has been placed under control. I have known many cancer sufferers regain vibrant life and great health despite undergoing many years of toxic drugs administration and chemotherapy.
Many factors can influence the way our body reacts to drug. In some cases, you may not even react to the side effects of these medication. Even if you start experiencing them, you may consult your doctor and discuss the possibility of halting or changing medications. Understand whether your medication should be taken along with food or not. Most drugs such as NSAIDs are recommended to be taken with food to reduce risk of stomach ulcers while others such as minocycline, an antibiotic is best taken without food to ensure maximum absorption of the drug.
Nutritional supplements may affect the way a drug works, and in some cases, may reduce the risk of certain side effects. For example, studies have supported the protective effect of folate supplementation (such as folic acid) in reducing Methotrexate (MTX) side effects related to the oral and GI systems.
Now, I hope that both my personal experience and rationales above can convince you to think twice before skipping any RA medications by realising the importance of receiving early treatments. If you know of anyone who delay treatments, get them to rationalise these. Share your comments on any other reasons that get RA patients to delay treatment or avoid medications.