What’s your role at talkhealth?
I’m the Community Manager – so I moderate the forums and make sure everything on our community pages is running smoothly.
How long have you lived with rheumatoid arthritis?
My RA started 12 years ago after the birth of my first child. It started out of the blue with excruciating throbbing pains in my left shoulder a couple of weeks after giving birth. The pain was like nothing I had ever experienced in my life before – it was a throbbing, aggressive, relentless and very angry pain. It wouldn’t affect me every day; it would come and go and my GP would just sit there scratching his head as there wasn’t anything showing up at the time in blood tests. He did not know what it was and was not much help.
The pain and inflammation then proceeded to migrate and roam around my body. It became a guessing game of which body part would be next. As it continued to affect me, my GP – after much pleading with him – eventually sent me to see a rheumatologist. They ran some other blood tests which showed high inflammation markers C-Reactive Protein (CRP) and Erythrocyte Sedimentation Rate (ESR) and something called the Rheumatoid Factor (RF) which shows up if you have RA. Not everyone with RA has the RF but I did and that was when I was formally diagnosed with Sero-Positive Rheumatoid Arthritis.
What medication or therapy were you initially prescribed?
I was put on the standard protocol of oral steroids to dampen the inflammation and a disease-modifying drug (DMARD) called Hydroxychloroquine to suppress the immune system. As the steroids work to stop the inflammation in its tracks, you then start to reduce them – by which time the Hydroxychloroquine kicks in and takes over.
This worked for me for several years and it was as if I didn’t have the disease anymore. The disease was in its infancy so easier to control. It was not cured but was in established remission. The drug, however, had started taking its toll on my eyesight (a common side effect). I decided that there must be another way to put the disease into remission without the use of these very powerful drugs. I then set to work trying to find out what factors or triggers could be the underlying cause of this disease.
What did you find to be the main triggers for an RA episode?
Not everyone has the same triggers and for me, it seems to be a combination of things which has taken me a decade to uncover.
Genes: My maternal grandmother had RA
Trauma: Early life trauma from having been adopted and then later in life due to parental divorce. Giving birth to my first child and catching an infection in the process was traumatic. The RA triggered thereafter.
Antibiotics: I have had my fair share of antibiotics and these kill both good and bad bacteria – harming our immune systems in the process. The bacteria are there to work to keep us balanced and in harmony, helping to digest food, kill off pathogens and help us absorb nutrients from the food that we eat. They are really a huge part of us.
Environment: My previous house (where the disease first reared its head) was tested for Geopathic Stress. I lived in a house that was built over a lot of underground issues such as fault/ley lines and deep underground streams. This resulted in the natural energy of the Earth being disturbed by weak electromagnetic fields causing health problems. I believe that this also played its part in triggering the RA. We promptly moved house after finding that out. Interestingly in Europe geopathic stress is widely recognised. In countries like Germany and Austria, they test the land before they build housing estates. Other environmental factors that affected me because of my sensitivity include Electromagnetic Field Emissions (EMF) from idect cordless phones, mobile phones, microwaves, electric pylons and mobile phone masts.
Gum disease: Digestion starts in the mouth. Pathogenic mouth bacteria can affect the whole digestive system and cause it to go into overdrive. Even minor gum issues will have a profound effect.
Viruses: I got tested and was found to have various viruses and infections lurking from childhood like coxsackie. They cause the immune system to go into overdrive to try and rid the body of them. Some viruses can hide from the immune system by a protein outer layer.
Heavy metals: Again, I was tested and found to have a high proportion of mercury and other heavy metals. I may have inherited the mercury if my biological mother had amalgam fillings which they now know can leach mercury out into the body.
Poor gut health: I believe this to be the biggest factor. I had a gut microbiome test done and was found to have absolutely NO beneficial bacteria at all. Emerging science is now finding that gut dysbiosis (an imbalance between the good ‘friendly’ bacteria and the pathogenic ‘bad bacteria’) can have a profound effect on the health of the body.
Your gut wall houses up to 70-80% of the cells that make up your immune system and so it was no surprise that my immune system was going haywire. Leaky gut also known as gut permeability is also an issue. The microscopic tiny junctions in our gut wall that are meant to be shut to keep food particles, pathogenic bacteria and viruses within our gut do not fully close and are ‘leaky’ – allowing all the above to enter the body’s circulation system and cause absolute havoc. You end up with more food in-tolerances and health issues as a consequence as the body becomes more and more sensitive and overburdened.
To balance out my gut bacteria, I drink kefir and its powerful stuff. It helps the body force out the pathogenic bacteria and then re-populates with friendly bacteria. We can inherit a bad gut environment from the womb so it can go way back to before we are born. The good news is that we can do something about it!
But other factors can cause leaky gut. When you have early life trauma, your body is put into a state of extreme stress and cortisol is released with adrenaline – switching on the ‘fight or flight response’. Too much sustained high cortisol in the system can have a detrimental effect on overall health.
How does RA impact on your daily life?
My condition is like a roller-coaster ride but with a natural regime, I feel more in control. There are flare-ups but I just manage them and accept my limitations rather than fighting them. In the early days, I was in denial and would feel so angry with my body and become so stressed. I felt a type of bereavement because I was longing for the life before RA.
As the disease migrated around the body, different limbs would become inflamed at a moments notice. It was hard to sleep and I would be left feeling very exhausted from the pain and lack of sleep. I couldn’t climb stairs or open jars. I would have to get my family to cut up food and help with personal tasks. It would be hard to even get up off the sofa.
Dealing with three children also was a struggle. In the early days after my twins were born, it was agony just changing nappies as my hands and fingers were stiff and throbbing. Unfortunately some of my fingers have been left ravaged by the disease. These days, there will be times where it will be harder to bend to get into the car or climb the stairs. I find myself hobbling and limping around but I just accept that it will pass and it makes me more determined to focus on sticking at my healthy regime.
It does have an impact on me every day in some way but the difference is how I cope with it mentally. I’m healing my body naturally, so when I have a good day, it feels such a positive and encouraging experience. I know that my body is happy because I am giving it the necessary things to help it reduce the inflammation. I don’t just rely on powerful drugs that cause secondary problems with serious side effects.
Many people think that arthritis only impacts older folks. Have you received adequate support from HCPs and/or friends as a result of that assumption?
My rheumatology nurses have always been absolutely fantastic. They have been so caring and I prefer to contact them rather than the rheumatologist. I’ve also always managed to get a physiotherapy appointment when I have needed it.
My children’s school have also always been fabulous, allowing me to park right outside the school gates. Friends have been helpful but they don’t always understand the mysteriousness of the condition; one day I could appear to be absolutely fine and the next, I’ll be completely floored or limping. I have explained to them that it affects more than just my joints but not everyone remembers and tends to lump it together with other forms of arthritis – especially degenerative/osteo that many older folk suffer from.
My family have been very supportive helping me physically and doing household chores. However, sometimes the emotional support is lacking. It can feel very lonely at times when the people around you are not able to empathise or are emotionally unavailable when I’m having a harder day with the disease. It is a disease that is very misunderstood and just doesn’t get the coverage that other diseases such as multiple sclerosis or cancer do.
What kinds of coping mechanisms do you have for making sure that you’re as functional as possible?
Empowerment is my main tool – honing the feeling that I can influence the course of the disease rather than the disease controlling me.
My coping mechanisms have somewhat evolved over the years. At first, fear and uncertainty dominated. I used to cling to the notion that drugs and the advice of my rheumatology team were the only things that were on offer when really, they were the only tools in their toolbox. I thought drugs were the only things that could save me from a life of pain, misery and becoming increasingly disabled.
I’ve come to realise, however, that both drugs and a holistic approach can work very well together. They both have their place in the management of this disease.
The very word DISEASE sounds frightening, but when you split the word up DIS-EASE then it actually isn’t as overwhelming. It means that the body is not at ease and is communicating with you to help achieve homeostasis and wellness. Instead of getting angry with it, I reversed my thinking. When I have the beginnings of a new bit of pain, I look at what factors could be at play on that particular day. Don’t get me wrong, sometimes I do become irritated at my body. It’s a bit like when dealing with a baby or toddler who won’t stop crying no matter what you do to try and help calm it. But usually, there is a justified reason.
I’ve also used the occupational therapy department in the past to help with bathing, cooking and loo seat aids. I’ve also received physiotherapy to help strengthen my muscles and keep me flexible.
At the end of the day, it’s about taking control. After the initial shock and denial for years after my diagnosis, I thought ‘no way, I’m not settling for this!’ I thought there must be another way of approaching my condition than just accepting drugs and surgery.
What advice do you have for other younger people who are living with arthritis?
Don’t lose hope – it really doesn’t have to be a life sentence. It is a very frustrating disease and can cause patients to feel very out of control. Allow yourself a bit of time to adjust to the diagnosis and accept it, but then realise that there is plenty of things that you can do to gain control of the disease.
The body is very clever and the reason it is causing these problems is to alert you to the fact that it’s not happy about the way you’re living or treating it. You will learn to become very in tune with your body and when you get a flare-up, try to remember what could possibly have been your trigger. You might find that you’ve eaten something that doesn’t agree with you, you’re not hydrated enough, not getting enough sleep, living with too much stress. Keep a symptom diary.
I would definitely recommend taking the drugs you will have been prescribed by your rheumatologist at the start, as this will stem the unraveling inflammation and slow the progression of the disease. The analogy I like to use is: ‘We need to stop the fire raging and going out of control so that it is contained. We want just glowing embers where it will be easier to manage and eventually put out (a long remission)’. This is where the drugs come in and do their bit. It may be a bit of trial and error to find the drug that most suits you (all drugs do have side effects, but the older Disease-Modifying (DMARDS) drugs such as Hydroxychloroquine and Methotrexate have less serious side effects).
The next stage is to ‘mop up’ the rest of the inflammation that has taken hold in the body, by:
- identifying trigger food intolerances
- decreasing stress levels
- treating any gum disease
- getting plenty of sleep
- focusing on good nutrition.
Lastly, be kind on yourself. The healing process is different for everyone. Everyone’s system is so different and we have different triggers so remain focused on your own journey. The healing time depends on how long you have had the disease, how good you are at sticking to your plan and whether you need to change your drugs.
What’s the one thing you wished more people knew about living with RA?
That it is a systemic disease so it doesn’t just affect your joints like Osteoarthritis – it’s an autoimmune disease like Multiple Sclerosis. RA attacks cartilage, ligaments, tendons and soft tissue. It can affect anywhere in the body including the eyes, lungs and heart. The target in the body may be different, but the underlying pathogenesis is the same. The Immune system has a glitch and is unable to distinguish between outside pathogens and its own tissues.
I wish it was renamed rheumatoid disease rather than arthritis which just means inflammation of the joints. There are also 100 types of arthritis so sufferers tend to get banded together as if we’re all suffering from a disease of old age. I’ve lost count of the number of times people say to me, ‘oh yes my nan’ suffers from that.