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.
jehanJune 9, 2013 at 2:33 am (10 years ago)
I completely agree with you. I was also quite stubborn when it comes to taking strong medication. Taking conventional RA medication was something that took me a long time to also accept. However, I realised that with all the natural treatments, exercise and diet that I have been doing to achieve remission, I also needed to take advantage of conventional RA drugs in times of bad flare ups. Although I didn’t want to pollute my body with strong RA drugs, all the vitamins, mineral supplements, proper diet and exercise have prepared my body’s immune system for these drugs ensuring that the side effects are minimal and almost non-existent. I think our priority should be our joints when considering whether to take on conventional treatment or not.
dianaadminJune 9, 2013 at 11:11 am (10 years ago)
Jehan, I’m missing you very much. Keep me wondering how you’ve been and I’m glad you replied earlier on :P. Yes, I think it’s all about achieving a balance here. We need to prevent joint damage and being able to function well. Another aspect of having consistent bad flare ups and excruciating pains day by day that I missed point out in this post is that it actually sent a negative spiral in my emotions and thought process. I started to turn from mildly depressed to badly depressed, guilt intensified as I could no longer perform simple tasks; and these flood of negative emotions just got worse and I was beating myself all the time. The worse part of this which I did not then aware; with higher stress, RA worsened. I’m glad you’re reading my blog :). Please do keep in touch.. Hug & love, Diana
PattyJune 10, 2013 at 9:21 pm (10 years ago)
I have had RA for 19 years now and have considerable joint damage. Wrist joints have fused on their own, one ankle joint also fused as well. I take conventional medicine and always continue to try holistic approaches. It has greatly affected my life, but I keep a good attitude and am now in process of “healing my life.”
Love and blessings to all
dianaJune 11, 2013 at 9:00 am (10 years ago)
Everyone is affected by RA differently. Unfortunately, you’d experience worse episodes than what I encountered; but I’m glad we’re on the same page with having a positive attitude towards healing ourselves, our minds, our health and our lives. Love, Diana
SueJune 11, 2013 at 3:01 am (10 years ago)
I have to disagree with you about the medications, FIRST DO NO HARM! I have only had RA 6 years and have never ever ever taken any of Big Pharma drugs. I am on a great healing path with just eating whole foods and eliminating anthing that will cause inflammation in my body. This is a complicated disease and there is not one true answer for everyone to follow. I think a person should follow how they feel and not be bullied by Doctors who want to push harmful drugs down your throat with scare tactics.
I will ask you this ………. do you eat a standard american diet?
dianaJune 11, 2013 at 9:14 am (10 years ago)
Sue, it’s okay to disagree. As you’d said, everyone is different & I certainly feel happy for you that you do not need any conventional drugs to keep the progression of RA at bay. Your story is surely one that can provide greater motivation to everyone out there that alternative approach does work to get one onto the healing path; which I have never doubted before. What I like to point out in this post is that RA does progress quickly. Extreme pain and inflammation can cause degeneration if these are not controlled. I would have of the same view as yourself if I could find the right diet that works straightaway when RA strikes. Unfortunately, this was not the case. Therefore, I like to point out the case that if anyone has similar case with trying alternative approaches which do not work & at the same time, still feeling terribly painful, it is important to ask yourself whether you should totally reject conventional med. Maintaining a balance is the key – going holistic on minimum drug possible & tapering off therefrom.
As for your question, I’m eating Asian diet. A typical Asian diet comprises rice, soup (bone & veggie broth), a meat-based dish and a vegetable-based dish.
Bon CrosbyJune 11, 2013 at 3:12 am (10 years ago)
My hands look much worse that the picture of yours, but unfortunately I developed RA before there was treatment to prevent the disfigirement. I feel most depressed because of my hands…even more than the awful pain I have through my entire body. They look like witch hands and are hard to use. Doctors just say sorry, nothing can be done. If only you had not had RA so early in your life before treatment was available. It seems to me there could be something that would help in some small way. If movies can make illusions of body parts that look so real why can’t the medical field make something for the hands that would cover these disfugured limbs? A glove that hides the hand and supports the fingers as well as being washable and doesn’t cost a fortune. I know something could be done to help us with all the modern technologies.
dianaJune 11, 2013 at 9:23 am (10 years ago)
I too believe that one day in the distant future (hopefully not-too-distant), our scientists can come up with a technology or something that will aid the disfigured joints on any parts of the body. And I really want to see (when I’m still living) to find a ‘cure’ for RA. Like the Indian proverb, in the world, there’s a herb to cure every ailment. It is just about finding this very miracle in this whole wide world. An example is the papaya leaf miracle cure for dengue. I gave this remedy to a close friend to try. And really, it works! I’m praying to see this day coming & knowing what that cure will be.
StacieJune 11, 2013 at 9:02 pm (10 years ago)
This was like reading my own story. I too, was stubborn about treatment. I tried to “power through” all the pain to the destruction of my wrist and a few fingers. I lived in denial and even thought I was being “weak” for not being able to handle it better than I did. I was completely ignorant of what was happening to my body. Thankfully, I have been blessed to find a medical treatment that works and has given me my life back with very insignificant side affects. I am very interested in holistic approaches as well, and wonder if there are those out there with moderate/severe RA that a holistic approach has helped (relieved pain and stopped progression) or even placed in remission.
dianaJune 11, 2013 at 9:45 pm (10 years ago)
In my entire RA journey, while this was not the only regret and mistake I’d made, but it was one that I wish I can reverse, if I were given a chance to change just one thing I’d done after RA diagnosis. But thinking on the bright side, there was a lesson learned in every route traveled. Don’t you agree? Re the med treatment with insignificant side effects that work for you, are you by any chances on AB protocol or LDN? Yes, I’d known and talked to many people with moderate/severe RA for many years (even decades) achieving tremendous improvements (in terms of pain, inflammation, progression, etc) in their conditions. A few are in clinical remission as I write.
StacieJune 12, 2013 at 9:45 pm (10 years ago)
I do agree! I learned a huge lesson! My medical treatment is currently MTX (I know, I know) and Plaquenil. So far, after 5+ years on MTX, I’ve suffered some hair loss and minor fatigue. After spending SO much time being unable to walk or even lift my fork to eat, I am completely able to work full time as a teacher and have minimal, sporadic pain.
Is there a place that I could read about these remissions and the treatments used?
jehanJune 14, 2013 at 11:20 am (10 years ago)
There are websites that could teach you a lot about RA and other auto immune diseases. You could also get a lot of advise from people who have achieved complete remission through a number of different approaches. As Diana mentioned, it is that kind of disease that needs a very individualised approach. Holistic therapy really helps not only in dealing with RA but also with overall health – mentally and physically. But there is not one size that fits all. I find that doing a combination of different protocols have significantly help halt the progression of the disease. I am also taking DMARDs and at times prednisone when I go through bad flare ups. But doing yoga, pilates and meditation, acupuncture, drinking plenty of fluids and eating a balanced diet, have lessened flares which means that I don’t have to take conventional meds as much. I keep RA meds only when my joints desperately need them. But in saying this, not everyone is the same in their approach. Your body will tell you what to do and when you need these drugs. – not your rheumatologist.
If you’re interested in finding out about alternative therapies especially one that have shown great results in people with RA, I recommend these websites:
To learn about diet and nutrition, this website has put together ample of information to get you started. There is also a website which Dr Natasha Campbell-McBride, who put together the concept of GAP (Gut And Psychology Syndrome), that you can take a look at to learn more about how nutrition and diet really affects ones mental state.
KahealaniJune 12, 2013 at 7:06 pm (10 years ago)
what is the tx that you use?