Hi, My Name Is Brian Darby and I’ve Had Rheumatoid Arthritis for Over 35 Years
A very warm welcome to you, I sincerely hope you find my blog to be useful. I’m learning more about RA all the time, and gaining new insights with each passing day. I want to use this blog to share what I’ve learned and experienced over three and a half decades in my constant struggle with RA. I also want to share and discuss new material and solutions which I’m uncovering through continuous reading, research, dialogues, and experimentation.
I was diagnosed with rheumatoid arthritis around thirty-five years ago. For a period of thirty-two years or so it had an increasingly negative impact on my life. It put an end to five years of dedicated training and study of full contact karate, it ultimately ended thirty-five years of playing the violin, guitar and mandolin. It prevented me from continuing almost all of my hobbies and interests.
It drastically reduced my ability to do any physical work, it also impaired my typing, my coordination, in fact almost every aspect of my life. A lifetime of skills and education became severely restricted.
Of course, there was the pain, inflammation, lack of sleep and the general disintegration of everyday life. The impact on everything that a healthy person would take for granted, you know, the little things like standing up, walking, combing your hair etc. :-)
However, as everyone who’s had the misfortune to experience this disease will understand, by far the worst thing was the devastating effect it had on my confidence, self-esteem, self-belief, motivation and my emotional ability to deal with even simple problems and tasks.
I’m a very positive, ambitious person, so throughout this period of my life I fought like crazy to beat this disease, to ignore its effects, to ‘carry on as normal’…
I should mention that I don’t smoke, I don’t drink alcohol, I don’t eat junk food and I’ve been vegetarian most of my life, although for a couple of years I was pescatarian in the belief that the omega-3’s from fish and fish oil would help to reduce my inflammation. More recently (2018), for almost a year now I have been fully whole food plant-based with minimal added salt, oil, and sugar. For the early part of my life and perhaps during half of the years fighting the early stages of rheumatoid arthritis, I kept myself very fit (karate, swimming, running etc.). I had always worked hard to maintain my health, I think that’s one of the reasons why the increasingly debilitating effects of rheumatoid arthritis had such a big psychological impact on me. I remember being angry and frustrated at becoming so ill after having invested so much time and effort into maintaining my health and learning about fitness and nutrition.
As an engineer, I was determined to understand the cause of my RA and to find a solution to it. I was not going to accept my situation and ‘manage my arthritis’ as the medical profession and most of the self-help resources would put it. Yes, I went through all the normal tests, saw lots of specialists over many years, all recommending various drug treatments, I heard all the advice… Nobody offered any hope of a cure or a solution, just treatment for the pain and inflammation and a steady decline in health, largely brought about by the side effects of most of the treatments.
I decided early on that I wouldn’t take any oral medication for my rheumatoid arthritis. I would plough on and try to find my own solution. I would face the pain (how hard could it be?) and know where I was up to each day, rather than be numbed by pain killers and be unaware of the damage being caused by the disease.
I was in for a surprise! As many of you will know, the pain caused by RA is something else again, enough said… So, I had to find some method of functioning each day in order to do my work (I ran an electronics design company which I later migrated across to IT and web design), I still didn’t want to take pain killers and other drugs by mouth because I wanted to protect my stomach, kidneys, liver, eyesight etc. You know, all the little things that a person relies on every day :-)
After further talks with another specialist I discovered that it was possible to have localised injections (synthetic corticosteroids) into the specific joints that were causing the most severe problems. I opted for these as a temporary solution until I could find my own ‘cure’ for this disease.
Again, as many of you will be aware, it’s often a specific joint (knee, elbow or wrist for example) that causes most of the pain (or sometimes a pair) and I found that a direct injection into my knee for example (see photo of my knees – the left knee had been injected, the right was scheduled for an injection), would be very effective and allow me to continue working for up to a year or more. The side effects were minimal and the drug stayed mostly within the synovial membrane in my knee. The small amount of drug that did leak out into my system, had a calming effect on the rest of my symptoms.
This is how I survived for twenty-five years or so, I’ve had maybe twenty injections over this period and I managed to avoid any form of oral medication, not even aspirin. However, there was a price, both my wrists became fused (they no longer flex), my right leg is permanently bent and I have two broken/fused fingers.
About five years ago, my situation became much worse and I was having injections every three months just to keep mobile. I was told I would finally have to start a drug regime. By the way, don’t you love the small print accompanying anti-inflammatory drugs? “May cause kidney failure.”, “May cause loss of eyesight.”, And my favourite: “Anti-inflammatories can sometimes make heart failure, or kidney failure worse.” How??? How exactly can heart failure or kidney failure be made any worse?? :-)
Throughout this entire period, I tried every conceivable method, system, and alternative therapy I could find or invent, in order to try to engineer a solution. Almost everything was unsuccessful, a few things had a mild impact, but one thing consistently worked; unfortunately it had one major drawback; ‘death’ :-) Yes, I’m smiling because if I hadn’t developed a sense of humour about this ridiculous disease, I would have died many years ago.
The method that worked every time, was to stop eating…. full stop.
If I stopped eating, the heat would disappear, the pressure would reduce, the inflammation would reduce and the pain would almost disappear too! Of course I could only continue this for a few days, then as soon as I started eating again, all the symptoms returned.
I should mention that I also read every accessible resource and research paper on rheumatoid arthritis (and associated diseases and treatments) and I also borrowed, bought and read over six hundred books on this subject ranging from medical texts, alternative therapies and the importance of sleep and stress reduction, through to nutrition and exercise.
Just over five years ago, with some engineering skill and a lot of luck, I stumbled upon a temporary solution to my problem, spurred on by the thought of having to finally start following a drug regimen, as I mentioned above. At the time I didn’t realise it was part of a fundamental solution or at least a huge step in the right direction, it just provided enough relief to avoid the follow up injection that was due about two months later.
I was happy because I was managing to extend the time period between injections and I thought maybe if I can cope for about six months, then I would be able to continue as before and avoid the use of oral drugs!
To my delight I noticed that the heat (you know, the heat that you feel in all your affected joints) faded, the inflammation reduced by itself (this never happened before, normally once inflammation starts, it’s a one way process until I receive a corticosteroid injection), mobility increased and pain disappeared almost completely. The remaining pain was the result of all the accumulated damage but NOT the active rheumatoid arthritis.
I continued with this solution for a few years and I was still fine. It was the reason why I started this blog, to share it with you and anyone else that you know who has rheumatoid arthritis (or related). Due to my changing circumstances and knowledge over the last few years, I have since changed my diet again several times, I explain why in these two posts: My Rheumatoid Arthritis – I Finally Discovered its Original Cause and Rheumatoid Arthritis – Infection Plus a Gut Reaction. Finally, in the last year I have moved to a fully whole food plant-based diet which appears to be the best overall solution. However, my original diet could still be very effective for many people with RA and because of its simplicity, it’s well worth a try, particularly if you would find it difficult to move all the way to a whole food plant-based diet.
If I had adopted a whole food plant-based diet twenty years ago or even ten years ago, I would still be able to do all the things that I worked so hard to learn how to do, but better late than never. I sincerely hope that research and discoveries (and particularly my more recent insights) will help some others with this disease, preferably before any permanent damage is caused.
I firmly believe that inflammatory arthritis is more like a set of ‘symptoms’ than a disease, and I’ll explain this further within this blog. Inflammatory arthritis such as rheumatoid arthritis and lupus, I believe, are lifestyle diseases and I believe that the inflammation and pain are the ‘symptoms’ of these diseases and not the definition. RA symptoms can have hundreds of causes or triggers but I’m certain that poor diet and lifestyle habits form the major driving force towards of the disease state.
You can read the details of how I originally removed the causes of my arthritis here: Preventing Rheumatoid Arthritis – Removing the Causes. I’ll be updating the page shortly to provide access to my current diet, treatments and methods of curing rheumatoid arthritis which of course I’m still working on, as it’s a continual process.
I wish you the best of health, hope and happiness… Don’t give in to this illness, tell it what you think of it, tell it to go where the sun doesn’t shine ;-) and fight to reclaim your life.
I’ll try to help as much as I can by adding further updates and relevant information on this blog, and also by responding as often as I can to your comments.
Please take good care of yourself.
Kindest regards
Brian.
T Graves says
I have a been fighting RA for 6 years and finally have had success. My battle with RA began with teeth. Oral bacteria (Porphyromonas gingivalis) spew out gingipains into your blood and modify your proteins with PPAD4 enzyme. Methothrexate is a folic acid inhibitor and so is essentially an antibiotic with bad side effects. Some people for some genetic reason are susceptible to Porphyromonas. When you eat the wrong food you feed the wrong bacteria which proliferate and cause no end of problems. A visit to the periodontist to remove the bacteria as well as green tea, cranberry, barley sprout powder and sword bean tea should also help, but if you get rid of the bacteria, you get rid of the RA.
Brian Darby says
Hi,
Thanks for your very helpful comment, I’m sorry for my late reply. I’m really glad to hear about your success after fighting RA for 6 years. I couldn’t agree more about oral bacteria being a cause or co-cause of RA. I hadn’t heard of the PPAD4 enzyme before your comment but now I’ll research it, thanks again for highlighting it.
Good point, this is probably one of the reasons why RA responds so well to dietary changes, not intolerance as such but an imbalance in intestinal bacteria.
It’s great that you managed to remove the focal source of your bacterial infection and thanks for the recommendations, I’ll certainly be researching and trying sword bean tea.
Nara says
hi
I have same symptoms like yours. Recently i’m using urine therapy for my arthritis. Now i’m sure fasting and urine therapy is the only way to cure arthrithis. Hope you will find many articles about urine therapy from internet. Also there’s a book named “water of living”. After reading this book, i decided to cure my illness with my own urine and it really helped.
Best wishes
Brian Darby says
Hi Nara, thank you for your very interesting comment.
Apologies for the long delay in replying, I have only recently returned to my blog after a long period of illness.
I have read a little about urine therapy but have not studied it in depth or researched it properly. However, thanks to your comment I will look into it further and learn more about it, and then I will write a post on it later. I’m glad it helped with your illness and I hope you continue to improve and stay healthy. Thanks again for bringing your solution to my attention. Best wishes to you too.
Christopher Wolfensberger says
Hi my name is chris wolfensberger i saw your pic on google and read your story i to am a musican and play bass. I got RA from a mutated tick bite in my left knee which started as lymes. Ive been through 30 different meds in a year including the shots none helped. The only thing that has helped was medical cannabis but i moved and am now waiting for a medical clearence in Md to continue use. Its the worst in my knees and fingers. Thanks for the help on the diet.
Brian Darby says
Hi Chris, thanks for your comment, it’s nice to hear from a fellow bass player.
Apologies for the long delay in replying, I have only recently returned to my blog after a long period of illness.
I’m really sorry to hear about your RA, Lyme is a common cause of RA symptoms and often leads to an RA diagnosis even though the cause is Borrelia or similar. Wow! That’s a lot of meds, I’m surprised the shots didn’t help, corticosteroid injections were the only medical treatments that worked for me, and the only one I would accept for my RA.
Glad you found a partial solution in medical cannabis, hope you were able to continue using it. I understand, it was the same for me; worse in my knees and fingers. You’re welcome Chris – I have since modified and developed my diet further and learned a great deal more about RA which I will be posting as I get time. If you are still struggling, get back to me and I’ll give you a few more suggestions and some information that may help.
Mohdadi Karim says
Hey Brian,
Using a search engine google, I wanted to know if there is something new regarding the disease Rheumatoid Arthritis, and I found the photo of your knee that puts you on your article, I ‘I thought it was my knee, but when I read your article, I think I’m not the only one who suffers from this disease.
when I was 12, my right knee was swollen, my parents were very worried, I went to the doctor, he told me that I have arthritis, and should I be patient. he gave me drugs, anti-inflammatory, as voltarine SR75 …
I’m 25 years old now, the problem is that my left knee is as sick as the right, I not always take the drugs, only when I have fever and pain, for one day only.
i don’t know what can i do, and what will i do .
here is some pictures of my knee :
‘https://i27.photobucket.com/albums/c178/admin125/jebrile/DSC03599.jpg’
‘https://i27.photobucket.com/albums/c178/admin125/jebrile/DSC03598.jpg’
‘https://i27.photobucket.com/albums/c178/admin125/jebrile/DSC03569.jpg’
‘https://i27.photobucket.com/albums/c178/admin125/jebrile/DSC03571.jpg’
Brian says
Hi Karim,
Thanks very much for your comment, I’m really sorry to hear that your problems with arthritis started at age 12 and it must have been very hard for your parents too.
Thank you for the photo links. Yes, your knee looks exactly the same as mine did (on many occasions) and I understand exactly how you feel and how it is affecting your life. There are millions of people all around the world with inflammatory arthritis, just like you and I, and it affects people of all ages. By the way, I’m really glad that you read my post/article, thank you!
Yes, I also tried the Voltarol (diclofenac range) type drugs initially for a few months and they were very effective, but I was worried by the potential side effects of long term use, so I decided to stop taking them and all other oral drugs, as I talked about in one of my posts.
I understand Karim, it’s terrible to have arthritis in one knee but when it develops in the other knee too, it becomes so much more difficult to deal with both physically and emotionally.
Karim, there is so much you can do, especially at your age… Here is a short list of things you could try based on my own experience.
First of all, speak with your doctor/rheumatologist and discuss the possibility of having direct corticosteroid treatment for your knees instead of taking drugs by mouth. Direct corticosteroid injections (after aspiration) can prevent inflammation for long periods of time, even many years.
The idea (speaking from my own experience, discussions with my specialists and research) is to have the lowest effective dose to produce a good result. Also, apparently much of the drug stays within the synovial membrane surrounding the knee joint, which reduces the risk of general side effects (which are many) since less of the drug circulates around your body.
When you take drugs by mouth, they can be very effective but they tend to be needed more often/regularly and eventually in larger doses to produce the same results. This increases the risk of side effects.
Try to avoid eating fried foods, heated/cooked oils and fat, and all processed/fast/pre-packaged foods (because they offer little nutritional value and it is impossible to know the condition of the oils and fats contained within them). You can find more suggestions here: Help reduce or avoid Rheumatoid Arthritis symptoms (just over half-way down the page).
Karim, if you have the time and the will power, you could give my own diet a try, details here: Rheumatoid Arthritis – Removing the causes
In general I would recommend two things: first of all, you should try to get your doctor/rheumatologist to help as much as possible, particularly to treat specific joints like your knees which will provide immediate relief for you, and will also help to prevent permanent damage to your joints (as long as the treatments are not repeated too often – if you follow my second suggestion below, you should be able to manage for a year or two after a single treatment).
Secondly, once you have had some treatment and the inflammation/heat/pain/fever etc., has disappeared, you should try to follow some of my suggestions above regarding diet. Try to follow a natural food diet, only eat meals prepared by yourself or your family (or close friends), eat mostly vegetables and fish, drink plenty of water and eat bananas. Try not to drink any canned or bottled drinks (especially fizzy ones), orange juice, lemon juice or vinegar.
Get plenty of sleep if possible, and (around 2 weeks after receiving treatment) do plenty of exercise (exercise bike, swimming; any non-impact exercise will work very well).
Hope that helps a little Karim :-) Stay positive! Please give my kindest regards to your parents.
zyrol says
Like you I believe in tackling the source of the problem and living in hopes that everything after that can only be good…I don’t really want to go down the drugs route….I shall give your diet suggestion a try starting from tomorrow and will let you know how I get on after the month.
Thanks for taking the time to share your story.
Brian says
Hi Zyrol, thanks for comment.
I’m glad you are giving it a try, I hope it works for you. Let me know if you need any help.
Look forward to hearing how you get on.