It has been awhile since I have talked about my genetic connective tissue disorder. What I am going to say will be a bit controversial for some as I tend to think outside the conventional box. Fortunately, there are plenty of trained physicians (such as Dr. Frank Lipman, Dr. Christiane Northrup and Dr. Amy Myers) that are firmly in the same camp as I am, unafraid to challenge the status quo when it comes to what works when treating chronic illness and utilizing gut healing protocols such as the 4-R’s as a start to improve almost any health condition.
Once I had done extensive research into Radiation Therapy (thank you to the Dupuytren’s Disease Support Group and The British Dupuytren’s Society) I decided it was not for me at this time. I am happy for those who are pleased with their treatment, but since it does not cure or even necessarily decrease the nodules, I decided to concentrate on natural means to support my body in healing, some of which many would consider drastic such as water fasting for over two weeks.
The expectation for RT is that it will halt the progression of the disease at least for a time. I believe, and have experienced, that this can be done with natural means if you are willing to do what it takes to achieve that state of good health for your own body. This may require the assistance of a holistic health practitioner such as a holistic nutritionist, naturopath or functional medicine doctor, to thoroughly look at your symptoms and figure out what body systems are stressed and need support to function optimally. Getting help may actually save you money in the long run since you will have a more targeted plan for changes rather than just a shotgun approach. For more information on my thought process about radiation therapy as an option for treatment, read this post.
I believe in taking personal responsibility for the state of my health. I do not believe we are victims of our genetics and doomed to disability from an irreversible, progressive disease. I do not believe that research will reveal a “cure” for this disease, where you can just pop a pill and it will go away. The body’s natural state is health. When we give our bodies what is required (with some individual variation), we heal to the degree possible, depending on how extensive the damage is. Unfortunately, there is a point of no return, in which case drugs, surgery or other more radical treatments may be the right decision.
Of course, taking responsibility for your own healing is a simple idea, but not so easy to implement. We are creatures of habit and often very attached to those habits which provide comfort in our busy lives. Changing our habits when it comes to food is particularly difficult and I have seen many people who would literally rather die than have to do that. Many are digging their own graves with a fork. So, as with any change, commitment and determination are necessary and you really have to be fed up with what is and ready to move on to something better, even if it means some new pain to get rid of your old pain. Click here for some tips to achieve any goal you set your mind to.
I am not opposed to research and spend much time reading over recent published papers from PubMed and other sources. I really hope we do learn more about the mechanism of how this disease manifests. Science may eventually reveal some of the root cause(s) and triggers for this condition. At the moment there are almost no studies and what there is focuses on the hands only. Unfortunately, the likelihood of lots of research into this disease happening any time soon is pretty slim. My focus is on what I can do in the here and now to help myself and others heal naturally. When looking at the scientific literature, there are clues to possible connections that help guide my self-experimentation.
My experience with Plantar Fibromatosis/Ledderhose and Dupuytrens has been that the severity of the symptoms, pain and even the size of the nodules (I have 2 in the left arch of my foot and a larger one in my right) waxes and wanes depending on what I do when it comes to my lifestyle. A healing lifestyle is the key to slowing and even reversing disease progression. You can’t just take a pill and then continue indulging in booze, processed food, lots of sugar/carbs, stressful relationships, medications for every complaint and lack of sleep without consequences. A very unusual (for me) recent vacation week that included a few margaritas and some sugary desserts made this very clear to me. I know for sure that I cannot indulge in these things without paying a price in inflammation and pain, including sudden, sharp pains in the nodules while lying in bed plus numbness and burning in the days that followed. It is just not worth it! Once back into my regular routine, within a couple of days things were back to my normal, tolerable state of equilibrium – just a bit of stiffness to be worked out in the morning then pain-free for the rest of the day.
Now, for an update on what I have been doing lately when it comes to potential natural treatment for Plantar Fibromatosis/Ledderhose and Dupuytren’s Disease. I am not using ALL of these modalities at the same time – the topicals in particular.
Unfortunately, prior to this year, my nodules didn’t really even appear visible to the eye unless I flexed my foot and they were painless, tiny, pea sized and soft. Now, they definitely are larger, harder, symptomatic and more protuberant. Anything that puts pressure on them will potentially cause more growth. To make sure that does not happen, I have altered some of my footwear with a Dremel tool. It is easy to do – just put lipstick on your nodules and step into the shoe to mark the area needing revision. Then, use a small stone sanding bit to gradually remove material in the area, checking several times to see that they are comfortable. The shoes I have altered so far are flipflop type, soft and rubbery textured so easy to access and work on. Before my flare-up and growth in the nodules one year ago, these shoes were comfortable even though I did have non-painful nodules already for about 10 years. If you have running shoes with insoles, you can try just cutting out the foam in the area of the nodule. I like Dr. Scholl’s memory foam insoles or Skechers shoes with memory foam lining as they work for me at this point, replacing my previous orthotics or arch support insoles which had begun to press on the bumps and cause pain.
My diet is anti-inflammatory. Do I cheat? Yeah, occasionally, but it is really not worth it, as I mentioned in the introduction. The 80/20 rule usually applies to relatively healthy people and they can get away with more cheating. I would say, if you have a chronic illness, it should be the rare exception.
I practice intermittent fasting, meaning I generally only eat for a window of about 8 hours per day, usually 11-7. Doing this over the past couple of years somewhat consistently, I now weigh 15 pounds less than I did for much of my life. I also do strict water fasting occasionally, for longevity and rejuvenative purposes. I did this for a stretch of 16 days this summer and eliminated my inflammatory foot pain within the first couple of days. I could not walk in the sand at all before my long fast – afterward, I was able to walk comfortably, sometimes for more than an hour, on a sandy beach. I even have tried dry fasting for short periods (something Russian physicians recommend for healing), similar to what an animal will do when sick – stop eating and drinking. I exercise (weight training, yoga/stretching) sometimes classes or gym, sometimes using bodyweight and some bands in the basement. Also, walking is great for both physical and mental health, to the degree my nodules can bear.
For the past couple of years I have drastically cut out anything that causes me stress in order to heal from HPA axis dysregulation. Due to trying to heal these issues with my endocrine system, I pretty much live like a hermit – work from home, don’t socialize, don’t go out at night and go to bed early. I get a good sleep (very important) by stepping outside early to get light in my eyes, blackout curtains, no screens within 2 hours of bed, quiet & cool bedroom, avoiding caffeine after noon, sometimes using herbs like passionflower or skullcap.
I have discontinued medications that I believe contributed to the sudden growth of the tumours on my feet last year. These were large doses of bio-identical hormones that I decided to try due to bone-loss concerns. The estrogen in the creams caused my thyroid to become sluggish, so I ended up on a small dose of thyroid medication as well. I am now only using herbal infusions as a bone strengthener and my thyroid has normalized. There has been no growth in my nodules since an unfortunate encounter with a massage therapist this past summer that will be mentioned again later in this article. The pain and growth I experienced at that time was the last flare-up of my disease where I was in severe pain, unable to walk more than a few steps and in despair. Since then, I have improved a great deal. Water fasting reversed the inflammation within days. Now, the nodules are stable, the pain is minimal and I am able to do many things that were impossible before such as lunges, which caused a tearing sensation in my nodules. So, yes, I have reversed some of my symptoms. The nodules remain though, and I still need to be cautious, so no miracle cure as yet.
I have continued my supplementation with natural herbal thyroid/adrenal support, probiotics (including naturally fermented sauerkraut), NAC, B-vitamins, Methyl Folate (I have a homozygous genetic defect in methylation, which is as bad as it gets, MTHFR A1289C among other problems with detox), magnesium, D3, digestive and proteolytic/systemic enzymes, Paba and I get enough essential fatty acids with flax, hemp, walnuts and an algae supplement that has both EPA and DHA.
I own a far-infrared sauna that I use regularly (almost daily) for detoxification plus activation of the parasympathetic nervous system. Use of a sauna promotes tissue regeneration and lowers inflammation. The deep, radiant far-infrared heat helps relieve stress and pain plus has longevity benefits. Because the air is not as hot as a regular sauna, it is easy to spend enough time in there to receive all the benefits and is safer for those with health conditions – although, obviously, medical consultation is necessary to ensure it is safe in your particular case since it is contraindicated for some people. An article in JAMA Internal Medicine found that regular sauna use promotes longevity, decreases fatal cardiovascular disease and lowers mortality overall.
By the way, on the topic of genetic defects, I highly recommend 23andme for a relatively inexpensive way to test your DNA. You will get a limited health report and ancestry information, but can run the raw data through a bunch of free or inexpensive sites to learn more. I will be writing an article soon on the specifics of epigenetics (the idea that your environment, diet and habits turn on or off genes), including some of the individual problems you can run into with certain Single Nucleotide Polymorphisms (SNPs). For instance, I discovered that I am one of those people who gain weight (APOA2 gene) when I eat a lot of saturated fat, which makes me thankful that most of my life I have eaten more olive oil than butter. Genetics explains why one diet works beautifully for one person and is a disaster for another and a blanket recommendation is impossible.
Topical applications include cannabis oil (the non-psychotropic type, high in CBD, now legal here in Canada with prescription), SSKI (super saturated potassium iodide), magnesium oil, Thacker’s formula (DMSO, castor oil, Apple Cider Vinegar), golden turmeric paste and poke root oil, but not all at the same time. Since I haven’t really been consistent with any one or the other of these and therefore have no scientific data to share. I think some or all of this may help (golden paste is definitely soothing), but what is taken internally has way more impact.
My most recent experiment in supplementation has involved making concentrated protein and mineral-rich herbal infusions on a daily basis to flood my body with nutrients. Herbs like nettles (great for adrenal health), red clover (hormones) and oat straw (calming, bone health) are amazing for healing, especially when prepared with the method best suited for extracting all the nutrition available. This means weighing out 1 oz. of the herb into a mason jar, pouring boiling water over and steeping for at least 4 hours or overnight. Yes, you need a kitchen scale, preferably with a TARE function to make things really easy – mine was $15. At least one woman I know of has reversed her osteoporosis with this easily absorbed mineral-rich drink.
When it comes to treatments, I have started a series of bodywork sessions known as rolfing or structural integration has been very helpful for loosening up the linked myofascial chains in my body and relieving the tension/pull on the nodules. Fair warning, it is painful! Just make sure to not allow any therapist to put direct pressure on your nodules (at least in the feet, I have heard massage can be helpful in the hands). I learned this the hard way and experienced most regrettable growth in my nodules after a massage therapist (who I thought knew better) decided to run a suction cup over them, to “break up fascia”. I have discontinued the red light therapy and soft laser I was doing previously as I tried a longer than usual treatment and had a flareup of growth and pain.
My time and effort will continue to be directed to conducting my own unscientific experiments (based on clues from the literature) with specific diet, lifestyle and supplement modalities, to see how they make an impact on the progress of this disease. If you are a fellow sufferer who is interested in non-medical ways to lessen the impact of this disease, stay tuned.
*For more about how I ended up triggering my genetic predisposition to Dupuytren’s and Ledderhose (Plantar Fibromatosis) you can click here for my initial blog post on the subject.