For the past couple of months I have been obsessing over what I can do, without serious medical intervention, to help my progressive, already somewhat disabling condition. If you haven’t already perused my previous post (written shortly after I had an exacerbation of the disease, from barely there and pain free, to ouch) on Dupuytren’s Disease and Plantar Fibromatosis (Ledderhose) you can access it by clicking this link.
Right now, my hands are still not too affected by the Dupuytren’s disease. I have a sore knuckle pad and some cords in the palm with a vague, almost constant ache plus sharp pain when I try to open a jar or do exercises involving stress on the hands. My feet, however are another story – I have significant nodules in the arches of my feet (benign tumours) that cause quite a lot of pain on a regular basis. You know how even a tiny pebble in your shoe is extremely annoying and most people would stop to remove it? Well, this condition is akin to walking on rocks you cannot remove – you just have to find some way to cope. For me, a cushiony insole is the answer right now, or bare feet at home as long as I stretch out and massage before I put my weight on my feet in the morning.
I am happy that there are a few Facebook groups (such as Dupuytren’s Disease Support Group and also this one from The British Dupuytren’s Society) that focus on this connective tissue disorder, and a website connecting people who deal with these conditions, where we share information about treatments and ideas for things to try to help with the symptoms. Unfortunately, there is not a lot of research into these conditions, especially Ledderhose, since it is not a life-threatening disease. There are more treatments for the hands (Xiaflex injections, for instance is approved for the hands only here in Canada) than the feet. Surgery is not an option since the lumps almost always come back quickly, become even larger and sometimes even multiply due to the proliferative fibroblasts (in overgrowth mode) that cause the initial nodules.
I am not going to go into detail about all the medical options, but let’s just say that radiation therapy is currently considered the best choice for Dupuytren’s and Ledderhose, with most people who undergo it being quite happy with their results. Here is a small, unpublished study on the results of radiation therapy for Plantar Fibromatosis that shows similar, mostly positive results from a larger study done elsewhere on Dupuytren’s Disease. Increased cancer risk is considered very slight, since they use a much smaller dose than for other diseases. In many cases, the nodules stop growing and sometimes even flatten out a bit. Unfortunately, there is a significant percentage of patients that either do not experience benefits or end up with a worse condition, including fibrosis and who may in future experience unknown effects from the radiation. I am glad that radiation has been successful for many, but it is a one-shot chance and is most effective given when the disease is in an “active” state so it is not a slam-dunk decision for me.
My reasons for not agreeing immediately to radiation treatment 6 months ago when my disease was at its worst include my serious genetic inability to detox (I have many Single Nucleotide Polymorphisms – defects discovered through genetic testing), strong history of cancer in the family plus the fact our nerve endings reside in our feet. Also, my only choice for funded treatment here in Canada is a hospital where they choose not to shield any of the healthy tissue of the foot. I know that the effect (from an IMRT machine) would be scattered and less in outlying areas, with the nodules getting the bulk of the dose (somewhat akin to spearing a raisin from different angles) but the entire bottom of the foot would receive at least some radiation. We are in the dark about long-term effects from this type of radiation with this procedure only having been performed for about a decade at most and little research. The Dupuytren Foundation (click here for an article on the subject of radiation therapy) states that, “One problem is the lack of data – it’s not yet known how radiation affects Dupuytren disease over the decades that follow”.
As an alternative to this treatment, I have found that what I do when it comes to diet, choice of footwear and insoles, supplements and other treatments has made enough of a difference to halt the growth of the nodules, so I will only choose to do radiation when or if I have another flare-up causing growth such as I experienced back in January.
So, most people who have read this far likely are suffering from this disease and want to know what actually had an effect on the disease. For those who have not yet tried radiation or other medical interventions, I would like to share what I have learned and for those who have already undergone radiation yet continue to suffer, they may want to look into some of these self-help measures to make the pain more bearable and hopefully ease the symptoms to a degree.
WHAT (in my experience) WORKS:
DIET IS KEY!
Let me start by saying that we don’t know what causes this disease other than genetics with are likely triggered by some kind of trauma. A healthy diet is individual – what works for one person will not work for everyone, so it is impossible to make any pronouncements about what is ideal for everyone. However, there are some general guidelines to minimize and hopefully prevent flare-ups that might be diet related due to inflammation, nutritional deficiencies and/or food intolerances. I think we all agree that a diet of processed foods, sugar (including alcohol), bad fats and refined carbohydrates is not a good idea for anyone. Lots of vegetables also contribute vitamins, minerals, fibre and phytonutrients necessary for optimal health.
A diet free of food intolerances and high in alkalinity will help keep your symptoms at bay. I tried a water fast for a few days and it was miraculous how much the nodules shrank and flattened out (go here to read more about that experience). The theory behind water fasting is that giving your digestive system a complete rest enables your body to heal in areas that would otherwise never be addressed. There is a lot of anecdotal evidence that fasting (which some may consider extreme) can result in reversal of disease.
After my water fast experiment, I attended a healing retreat. I was there for 3 weeks and ate almost nothing but raw, vegan foods (there were only a few simple cooked items like quinoa for breakfast or a simple bean soup for supper once a week). No sugar, alcohol, caffeine, meat, dairy or gluten and fruit only twice per week at breakfast.
Superfoods like wheatgrass, seaweed, blue-green algae and sprouts were part of the program. We drank green juice twice a day made from pea shoots, sunflower sprouts, celery and cucumber. Those with serious illnesses like cancer or autoimmune conditions are even denied the twice-weekly fruit.
There were also a lot of different treatments to enhance the detox process, lectures, exercise classes and even counselling. You can eat the cleanest diet in the world, but if you are chronically stressed your body will still be acidic. To enhance the detox process, enemas and wheatgrass implants were also employed.
By the end of the 3 weeks I was pain-free, the nodules had flattened out and I was feeling healthy, energetic and wonderful.
Now, I am not saying everyone has to go vegan, but research shows that we all should be eating a primarily a whole-food, plant-based diet with tons of greens and sprouts. If you do eat animal products, think of them as a garnish and certainly not for every meal. I especially love broccoli sprouts – they are super easy to grow and there has been a ton of research showing profound benefits done by Johns Hopkins University. For more information on the basic guidelines for an anti-inflammatory diet, please read this post.
- Circulation is very important, so soaking the feet in a foot bath as hot as you can stand at least once per day (I like doing this before bed) is great to enhance healing. I add epsom salts, baking soda and sometimes some sea salt to the water.
- Systemic, proteolytic enzymes taken on an empty stomach help to break down tumours (excess fibrin), so this is something I have incorporated. You definitely need protease and should consider adding serrapeptase, nattokinase and a variety of other enzymes.
- LED light therapy combined with cold laser at my chiropodist’s office has helped – when I came back from Florida with exacerbated pain and growth, this treatment immediately settled things down. I could tell the disease was active, as the pain when the LED lights were attached was rather intense when it is usually completely pain-free. My chiropodist indicated that this was a sign of active disease.
- I have altered some of the exercise I partake in. I am unable to walk as long or as far as I used to and I have to rotate my footwear as well. Postures where there is over-stretching of my feet or too much weight on my hands are now avoided as much as possible, as I do note an increase in pain when I have ignored the warning signals (discomfort) my body sends. In this case there is no gain when there is pain. I do try to continue to stay as active as I can, doing walking strength/resistance exercises, rebounding and stretching, within my pain limits.
OTHER THINGS I HAVE TRIED WITH NEGATIVE or UNKNOWN RESULTS (some might have helped):
- Light cross-friction massage and gentle stretching/flexing of the feet (especially first thing in the morning) sometimes using essential oils, with anti-inflammatory properties like frankincense, peppermint (which is supposed to drive substances deeper) and anti-inflammatory oils like poke root. I am still not sure whether this is helping my situation or not – even anecdotal evidence on this is mixed.
- Topical application of SSKI (super saturated potassium iodide solution), Lugol’s solution (another iodine concoction), DMSO, Thacker’s formula (which is DMSO with a little castor oil to soften and apple cider vinegar for the enzymes), arnica gel, Wan Hua oil, aloe vera gel, golden paste (click here for how to make it with turmeric powder, black pepper and coconut oil) and magnesium oil. I would have to do one at a time to see what really works but have been employing the shotgun approach, so who knows. I did see a distinct change in the texture of my skin in the area of the nodule when using the Thacker’s formula regularly for a few months, but no miracle cure with the lumps. The most recent experiment has been golden paste (turmeric powder coconut oil and black pepper – click here for a how-to directions for making your own) taken internally and applied as a poultice to my feet overnight, but it is too early to say whether it is having an easily discernible difference.
- I take a lot of supplements but need to point out that none of these would work without an anti-inflammatory diet. Some of the supplements I use have included digestive enzymes, Unique-E, magnesium glycinate, B-Vitamins, NAC (which can help heal the gut), PABA, iodoral, zinc, l-carnitine, turmeric gel capsules that contain oil and piperine (if you cook with turmeric, always include black pepper and some oil for best absorption) and more. I have also used a homeopathic scar remedy.
This is an individual prescription and I would strongly advise you to consult a nutritionist who will work with your symptomatology to find imbalances or deficiencies and/or have blood tests done. There are some very common nutrients that many people are lacking such as magnesium, B12 and iron but it is not a good idea to supplement without knowing as, for instance, too much iron is harmful.
- Orthotics – for me, this has been a fail, as the orthotics I was prescribed still irritate my nodules. The pair I have were created with the nodules in mind but I also had the pedorthist hollow out (the term is cavitation) underneath the area where the lumps are located. The are okay for short periods, but still touch the bumps and cause pain after extended wear. I am actually kind of puzzled as to what to put on my feet this summer as even my go-to, spongey FitFlop sandals now press on the nodules enough to cause pain and they get rubbed raw when worn for lengthy periods of time. Flat flipflops are okay for the nodules, but then my bunions, plantar fasciitis and Morton’s Neuroma start causing pain – yes, I have the worst feet possible.
I would like to emphasize that all of the above strategies have had a synergistic effect. If you are only going to do one thing, I would say diet is the most important as well as correcting any nutritional deficiencies and looking for signs of leaky gut or dysbiosis.
We need to do everything we can to increase our ability to heal – it is not the germ that causes the problem, it is the terrain. Genetics load the gun, but what we put in our bodies, activities we engage in and other environmental factors pull the trigger when it comes to disease. In my case I blame my beloved Dansko clogs and Birkenstock sandals, with their high, hard arch support plus hormonal/thyroid problems and previous poor nutrition/lifestyle over time.
Those who put unquestioning faith in the medical system will not agree with my approach. I am not going to push my convictions on anyone, rather I wish to share what I have experienced in the hope that it may benefit others who may have no other option. Some people have had failed radiation therapy, do not have access to it or it is prohibitively costly. We all have to take responsibility for our health, do our research and make educated decisions based on our individual circumstances. In my case, I have researched, consulted experts and thought a lot about what logically might help, given my education in natural healing and keeping in mind what I know about biochemistry and body metabolism. Never say never, so in future, if I have another flare-up with growth of the nodule I will re-consider my decision and perhaps resort to radiation. If the nodules grow any further, my ability to walk would be affected enough to make the risk worthwhile. I know for some of you that time has already come, so radiation may be the best choice.
Personally, I have seen far too many studies that have later been proven wrong to put blind faith in medical treatments that are still experimental for this disease. We don’t have decades of even anecdotal evidence for this particular treatment. In this case, we have a rare disease with very little research and we are serving as the guinea pigs. That is not likely to change any time soon so I think it makes sense to take our health into our own hands (and feet). For now, my strategies have resulted in halting the growth and controlling the pain. This disease is something we have to live with and control to the best of our ability, whether we choose radiation or not, so I hope the strategies I have employed may be helpful to you as well. In future, if I have another major flare-up and the nodules begin to become more painful, increase in size or new nodules form, then I will re-consider my decision to forego radiation therapy. I know I am taking a risk in not doing it earlier rather than later since the treatment is thought to be more effective at an early stage of the disease. I think radiation therapy is a reasonable course of action when the alternative is extreme pain and complete disability.
Here is the before (of my left foot, which is the most painful and has more than one nodule) from January 2016:
And the after, which is a lot flatter and less painful, upon my return from the 3-week health retreat in May 2016: