Finally …. a Plantar Fibromatosis (Ledderhose) Update!
Apologies to everyone who wrote in wanting an update on the genetic connective tissue disease we share. My website was out of commission for longer than it should have due to a bunch of technical issues. That’s what happens when your tech support is related to you (my son) and is busy with other stuff like traveling the world to Japan and China!
So, another reason that there has been no update is that there really is nothing to report. My condition is stable. If I am on my feet too long or wear the wrong shoes, they sometimes flare up with swelling and pain, but I generally keep inflammation to a minimum with diet, supplements, lifestyle and targeted medication. Details about all that is documented elsewhere on this site, so just type “Plantar Fibromatosis” or “Ledderhose” into the search bar and several articles should appear for you to peruse. In addition, please read this article about diet.
I will share with you the new things I have tried that (in combination with everything else I have mentioned on this site) have halted progression of this disease:
- Application of custom compounded 15% verapamil gel to just the nodules. I also use a spritz of a DMSO spray to help with absorption of the gel. I use rubber gloves to rub in the gel because I had a BIG problem with insomnia after I started applying the gel (a very rare side effect, lucky me) when I was applying several times a day even though was only supposed to be twice! I overdid it because it seemed to be helping, and of course, I thought, more is better! I am hyper-reactive to medications of all kinds due to genetic mutations (one of which is homozygous MTHFR) so that was a bad idea. I only use in the morning due to my sleep issues. I think that if I could use it twice daily, as it is meant to be used, I would see more shrinkage – I know it seemed to be going that way when I was using it more often. So, if you have not already tried this, and you are already doing all the right things with diet, etc. it may make a difference for you. You will need a prescription from your doctor to obtain this medication. If you do not have your diet and lifestyle on point, this may not work – it is something that will fine tune what you are already doing to improve your overall health!
- I have treatments that use a pulsed electromagnetic field to stimulate cell metabolism and oxygen transport. There are a number of devices that provide this sort of treatment, so do your research. I have not seen a miracle cure, and I have no solid proof, but I believe that these treatments have helped limit further progression of my disease.
- My diet is key. When I cheat and have sugar, alcohol or other junky processed foods, I pay the price with increased inflammation and pain. Eat a lot of vegetables in general and green vegetables in particular – this will provide your body with easily assimilated magnesium and other minerals! Most people are deficient in those micronutrients. Don’t think you can get away with a poor diet and lifestyle – it may not be a cause, but it will certainly exacerbate the disease.
- I started taking low dose naltrexone as an anti-inflammatory. I worked my way up to 4.5 mg dose at bedtime. This medication has been very effective in people with autoimmune conditions, such as MS, and I believe it has helped in my case. Again, I need to emphasize that this is in addition to doing all the right things when it comes to what you put in your mouth and your general lifestyle.
- I practice fasting. I do daily intermittent fasting with an eating window of around 8 hours. Fasting is the best way to generate growth hormone and get your body into autophagy (cell eating – the body’s way of cleaning up dead and diseased tissue). As a side note, if you are overweight, the extra stress on your feet will not help with the pain, and I feel that intermittent fasting is one of the most painless ways to lose weight. I have a friend who has gradually reversed her weight by fasting Sunday evening through to Tuesday morning. I like to do my fasting daily, sometimes dry fasting as well, with occasional longer fasts. You need to ease into fasting gradually and always make sure it is safe for you by consulting your medical doctor as there are a few people who cannot fast due to a (very rare) genetic defect in fat metabolism.
- I take proteolytic or systemic enzymes on an empty stomach. These also encourage the body to break up fibrin (what nodules are composed of) and stimulate the immune system. There different types on the market which you can choose based on your needs.
- I have a personalized regimen of other supplements based on my symptomatology and current needs. This is something you need to determine with the assistance of a health practitioner.
You may recall I had an interview with a radiation oncologist about radiation therapy, but he suggested doing something to reduce the size of the bumps first. I think that if the bumps got much larger, I would even consider surgery followed directly by radiation to limit any post-surgery growth. The treatment I am thinking about in future is injection with hyaluronidase and that is something I would certainly do first before ever considering radiation as there are anecdotal reports that the injections are more effective in people who have not already had radiation. I have heard some positive accounts of shrinkage of the lumps with this treatment (enzyme injection) but since I am currently doing okay, for now, I am averse to poking the beast and potentially making things worse due to stimulating the nodules. However, for some of you, I thought I would mention my thoughts on the subject since if you have larger nodules and need to do something more drastic, you need to assess the risks.
Plantar Fibromatosis is a chronic health issue that sadly has no cure. Reversal of the disease has so far eluded me, although the size of the nodules does seem to have regressed a bit and I am hopeful it will continue. They are still there though and still causing me to need footwear insole modification, especially my left foot which is the worst. The best we can do at the moment is control further growth and hopefully halt further progression. I believe in doing so with natural methods as much as possible, although I am open to medications that have few side effects such as the two detailed above. Everything you do to improve your general health will also improve this disease.
These days, I am not usually in pain and am able to be pretty active. I walk, I weight train, I work and am able to carry on with my life. Some days, I almost forget about my foot problems! A very important modification I have made is to wear insoles that are carved out underneath to alleviate any pressure on the lumps in my arch. These can be custom orthotics or any other insole. With thinner insoles such as those that come in running shoes, you can even just cut out a hole after finding the correct spot by putting lipstick on the apex of your largest bump!
If you need or desire personalized support and analysis, I am available for consultations – look under transformation services on this website. If you have contacted me previously and not heard back, it is likely due to my website problems, so I apologize profusely – please send me another message.
Please let me know how you are doing in the comments!