Some of the shoes I can no longer wear 🙁
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 Here is a small, unpublished study on the results of radiation therapy for Plantar Fibromatosis that shows similar, mostly positive results from a larger study done elsewhere on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.
TREATMENTS
- 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:
Comments 41
Great article/recap…thank you Laurel!
Your fibromas almost identically match mine!
I’m trying to cut back on sugar, processed foods, and starchy carbs….but I’m soooooooo totally addicted to french fries, that it is very hard.
I’m like you in that I have been experimenting with some protocols since my surgery in Jan 28, 2016 (today is Jun 26, 2016 so it has only been 5 months). I’ve gone back to wearing my heavy suede shoes and socks after my twice daily Verapamil treatment. Sigh. I’m a *bigtime* barefoot person and wearing heavy shoes in Texas summers (even around the house) is a *big* pain in the butt.
((((hugs)))) I look forward to more of your updates…we have to be there for each other since the medical industry is not.
Thank you.. I really appreciate your thoughtful approach. Thanks for taking the time to put it in writing. It really reinforces what I have been thinking.
Thank you for this. Surgery and radiation are outdated barbaric techniques in my opinion. Those treatments do not consider the overall wellness of the whole body.
I love that you mention water fasting. My roommate completely cured her debilitating rhuematoid arthritis by water fasting for thirty days. Then she completely avoids dairy. Anytime she eats dairy even a bit she feels it flare up. Now she is completely free of the problem (for six years now) and she does a water fast one month a year. Its amazing to see her do it as I used to think one couldnt live without food….. when actually its more likely we are killing ourselves with too much food!! Very inspiring.
My brother is trying to understand fibromotosis of his hands and I am assisting his research.
Im so thankful to find your post as it supports my hunch. The solution is ‘anti-inflamatory’ diet & balanced full nutrients. (& fasting)
Also, I am a firm believer in colon and liver & kidney cleansing as part of a healing regimine.
These important organs must be clear for the immune system and the body to function properly.
Author
Wow, thank you Natalie for taking the time to express your thoughts on this subject. I really do think water fasting is an underrated “cure” for many ailments, giving the body a chance to heal from problems. I also had a sinus infection every autumn until I dumped the milk I was drinking, mostly just an occasional latte, but not good for my constitution. Since I gave up dairy (for the most part) I have not had a sinus infection!
Thank you for this inciteful review, Laurel. I’ve had a small bump in my arch for many years but this past season of self inflicted abuse working 15 hour days on my feet has taken its toll and I now have a couple more lumps and increasing pain. I’ve read as much as I can absorb on the subject but your information was the most succinct.
Author
Thanks so much Irene for your comment. I am sorry you are also dealing with an exacerbation of this disease. We really need to be careful and baby our feet and I also have, unfortunately, paid the price of growth and increased pain when I have not been careful. It is so tedious to always have to be thinking about our feet instead of just living our lives, but I am working on acceptance. Today I have not been careful, having been on my feet most of the day and I am now experiencing freezing cold feet and some stabby pains in the nodules, so I am off to soak my feet and apply some topicals.
Thanks for your comments, it certainly makes sense to try to figure the cause of the disease, and control the switch. So I applaud your efforts, many of the natural remedies you mention may be very helpful. As we know , each of us is unique which makes it very challenging.
Author
Yes, for sure – although there are some universal truths when it comes to nutrition, we are all biochemically unique. I am currently having a lot of success with herbal infusions with a noticeable reduction in the size and pain of the nodules on the bottom of my feet. I am cautiously excited and optimistic! Will report back once I have more data 🙂
Laurel; thank you for publishing your research. So far the most encouraging, comprehensive, thorough and optimistic informative writing I have found on the web. I am scared! I noticed one fibroma and a smaller one on the other foot about three years ago. I deliberately ignored them since they didn’t bother me and because I had to focus on my other medical conditions and the many other traumas in my life:(. I have CLL (chronic lymphocitic leukemia), initially diagnosed 5 years ago. I received immunotherapy and a new drug called Ibrutinib to treat my leukemia and have responded well for about two years. Just like Irene (Hi Irene), I started a new job 4 months ago, I am hostessing and running food for 5-6 hours straight, walking non stop! My fibromas have grown significantly and the pain is now sharp. I have two big nodules under my left foot and one under my right. Leukemia is aggressively coming back and I fear I won’t be able to perform at work. As strange as it may seem, I know I have several effective treatment I can choose for Leukemia, however; this new, rare, and obnoxious disease, literally terrifies me, as it jeopardizes the very essence of my nature; passion for work and free time activities (I am an avid hiker and beach walker). I recently saw an incredible Doctor for Integrative Medicine at UCSF Mount Zion, Dr Donald Abrams. He is a strong advocate for healthy nutrition and confirms what you write in your articles. I am already taking Turmeric, CalMag, D3, Omega3 and B12 complex. Just like you, he says an noninflammatory diet is crucial for cancer patients…. I am afraid depression will take over my will power and I won’t be able to eat and live a healthy life style. Reading and finding support with people sharing the same problematic will help. Thank you again!
Author
Hi Lorenza, thanks so much for leaving your comment. I am so sorry you are going through so much and wish you all the best in your healing. I am currently experimenting with herbs and have had some great results which I will write about soon. Although the lumps are still there, they have remained stable, are a little smaller (less inflammation) and relatively painless (other than first thing in the morning and some days after I have perhaps been on my feet too much). I agree that the loss of ability to be active is very distressing. Although it is tough to change our habits, please just take it one day at a time. Persistence over time is key – you will notice changes for the better. Sending you a virtual hug.
Hello Laurel. Thank you for the detailed information you offer! I’m interested to know which healing retreat you attended if you wouldn’t mind sharing the name of it.
Thank you and I look forward to more of your writings.
Author
Hi Jillian, thanks so much for reading and leaving a comment! I went to Hippocrates Health Institute in West Palm Beach, Florida. I plan to blog about it at some point so stay tuned 🙂
Laurel, I am very interested to know how things are going with your herbal infusions… and what herbs you are using! I have tried a lot of different things over the past several years for plantar fibromas on both feet, including comfrey poultices (didn’t notice a benefit with those). I have had some good results recently from ultrasound treatments.
Author
Hi Felice! Thanks for your comment. I am so glad to hear that you have experienced improvements from your ultrasound treatments! I would love to hear more about that.
Drinking nourishing herbal infusions regularly will help anyone improve their health problems. Please read my most recent article on this blog (search for “herbal infusions”) where I set out all the details about preparing the infusions and what herbs I use! I hope you drink a quart (or litre for us Canadians) of infusion daily for awhile and see the benefits for yourself.
I also tend to think outside the box and have tried many things over the past several years – will share it here in case any of it might be helpful to you! I’ve read a lot online, hoping to find new information, and am glad to come across your website! Like you, I have two nodules in my left arch and one in my right. When I went to a podiatrist 4-5 years ago to establish a diagnosis (for what were then very small bumps) and share what I’d read online about various treatments, he confirmed my plantar fibromatosis and told me there was nothing that could be done until it was so bad that it needed surgery. No thanks! I never went back to him, and started to try some things on my own i.e. comfrey poultices, apple cider vinegar soaks, aloe vera.
After reading online that physical therapy (stretches and ultrasound) might help, I went to a physical therapist in 2015. The PT wasn’t sure if the ultrasound would help but agreed to try it. That and the stretching exercises she gave me seemed to really help. I was only allowed a certain number of visits through my insurance and after I was through with them I continued to do the stretching at home. A year later I went back for more appointments. We noticed less progress with the first couple of ultrasound treatments and after some discussion of what was different than the year before, she asked me to discontinue my high impact aerobic classes for the next couple of weeks. Sure enough, we began to see the kind of progress we’d seen the prior year! (I haven’t been back to aerobic class since.) She measured my bumps at the first and last appointments, and they did in fact get smaller!
That was about a year ago. Recently the bumps started to get larger and I was also feeling some twinges/pain every once in awhile for the first time. I just started to go to the PT again – I’ve had 3 appointments so far (ultrasound and stretching) and can already notice a small difference and haven’t had further twinges/aches/pains.
My goal is to keep the bumps from getting bigger – I can live with them at the size they are at now! I wish I could afford to get ultrasound treatments once or twice a month all year ‘round, after I use up all of my PT appointments. I will stay away from high impact exercise, and have been steadily and slowly losing weight over the past couple of years, figuring that might help. I also put vitamin E on the bumps once a day and cover it with a bandaid to keep it from making a mess. Who knows if that helps or not, but it seems to me to make the bumps a little softer.
I was interested to read about your unfortunate encounter with a massage therapist. I had a similar experience with a chiropractor who told me that I actually had plantar fasciitis. I was happy and relieved, but she was wrong! She did very hard direct pressing on the bumps (in order to break up the scar tissue) and she had me doing things like rolling my feet over a hard golf ball. My feet hurt a lot and the bumps got much bigger. I no longer allow anyone to put direct pressure on the bumps!
I will definitely read more about your herbal infusions, but will wait till I’m done with my ultrasound treatments before trying anything different!
Thank you ever so much for taking the time to expose all your research on that matter….
I have just been diagnosed with Ledderhose, and I will definitely follow some of your tips….
Author
Stephen, I am so sorry that you have Ledderhose disease and hope that you are able to halt progression. For me, that has largely been accomplished by improving general health, addressing nutrient deficiencies and imbalance and keeping my nodules stress-free. Prevention is always better than trying to fix things once the disease has been activated (and that applies to all disease, not just connective tissue disorders), but I have hope that if I am careful with my lifestyle, diet and trauma to the nodules, that I will continue to remain stable. I wish you all the best!
Hi Laurel,
Thank you for your post. I had plantar fasciitis about a year ago, and then 6 months later, I noticed these 2 lumps in the middle of each arch. I went to the podiatrist who ordered me orthotics holes put into them under the lamp arch. I went to the podiatrist who ordered me orthotics holes put into them under the lumps. He told me this was plantar fibroma’s. And offered me a steroid shots which I could not take because steroids have a bad affect on me. I did some research on the Internet and found a podiatrist in Texas who uses an enzyme called Vitrase, and I begged the podiatrist I was seeing to call him and learn more about it. The lumps had grown very large – the one on my right foot was the size of a ping-pong ball. I was desperate. The podiatrist I saw learned the procedure with the enzyme and I was his first guinea pig. The nodules immediately flattened. I am rubbing verapamil into both feet now. I am noticing they are growing a bit again, and feel discouraged. I have been eating clean, no sugar, no gluten, no dairy, no grain and no processed foods and no alcohol for 10 years.
Can you tell me what herbal drink you are using as well as how much of the proteolitic enzymes you are taking?
I feel so discouraged that he enzyme treatments only lasted a couple of months. Most of the people I have communicated with about this are doing radiation, but that scares the crap out of me.
Have you found anything new since you first posted this blog?
Thanks!
Author
Hi Debi,
Well, I wrote a very long reply that I somehow lost – short answer, here is the post about preparing the infusions. An herbalist suggested soaking the feet in comfrey infusion. Also, hot/cold contrast is great. When the lumps are flared up, I do a golden paste poultice (wrap with plastic and wear black sox).
I have found that every time I try a new treatment it seems to make things worse. Now, I rely on my herbal infusions, an anti-inflammatory diet, periodic/intermittent fasting, topicals, supplements and being very careful to not aggravate my nodules with the wrong footwear in order to keep things stable.
You can take as many proteolytic enzymes as your wallet allows – they are not cheap! I have used anywhere from 3-6 at at time, a few times a day. They must be taken on an EMPTY stomach to be effective. I personally think autophagy is more likely from fasting.
I want to emphasize that through experiment I have settled on this for myself but we are all different and what works for one person to achieve optimum health won’t necessarily work for another. That is why you either need to spend a lot of time researching and figuring it out for yourself or consult someone who can help you. As is the case with more natural health practitioners, I do a thorough health history, symptomatology and genetic testing to figure out where the areas of weakness are.
I have a lot of SNPs (genetic defects) including MTHFR on both strands so am 70% less effective at detoxing, for example, as well as a COMT defect that means I have to be careful about supplementing methylated B vitamins to fix the MTHFR problem. So, it is complicated.
Best to you, let me know how you get on!
Author
Also, I think you missed seeing this more recent update that may provide a bit more info.
Hi Debi, my name is David and I am emailing you because I am in the exact same situation that you were from the sounds of things. I live in Toronto (canada), and I have looking for any solution as this disease has progressed out of nowhere fast. I am looking for a podiatrist to do the same thing that you had done here in toronto. I noticed you didn’t put the doctors name from Texas, which I think there is only one well known one doing it. Since you didn’t put his name, you probably don’t want me to put a
couple questions I have publicly. do you have an email or fb, I could ask you a couple questions since I am in the exact same situation please?
Dear Laurel,
Wonderful article and such SANE advice!
Had surgery way back when, in 1978, and the fibroma grew back within six months. Went to Children’s Hospital in Boston for the regrowth and was lucky enough to see a surgeon and radiologist who wanted to try a “new treatment”, which was no treatment at all except for monitoring and measuring. I believe those doctors saved my foot.
Was pain free for many years, then started developing more nodules (in both feet now) in the past year. I noticed that if I bathed instead of showered, they would hurt less and start to flatten out! Same thing with drinking lots of water. AND, I had given up meat for a year and just started eating it again – and now I am sure that my feet feel worse because of this diet change.
I thought I was imagining the effect these lifestyle changes were having on me, but reading your article gives me renewed hope and gets me back on track.
P.S. Just started Verapamil Gel, and I feel like that makes it worse.
Author
Hi Karen! Thanks for reading and sharing your experience. I am sorry to hear that surgery did not help your situation and that you have had a flare up of growth recently. Please let us know how things go with the Verapamil Gel. Some people say it has helped. I haven’t tried that as the name brand is not readily available in Canada and reports say that generic does not work.
Thanks so much for this page I am new to this foot problem i have a lump growing in the arch of each of my feet. Along with bunions and hammertoes. I walk dogs and think that i may have to change careers.
Author
Hi Joyce, thanks for your comment. It is very upsetting for active people in particular. I have found altering my footwear (insoles) has helped me stay active, although I can’t do what I used to without consequences (flare-up of pain and growth). I am also blessed with the foot problems you mention in addition to LD so I do sympathize 🙁
thank you for this read I was in Raidation treatment and my hair & eyebrows & eyelashes were starting to fall out, they all said Stress/ thyroid/and a couple other things I cant remeber so I stop going and will try what I read. I have it in both my feet the LedderHose disease I’m glad I was up decided to look up articles on my LD. can I put an update later on ? again thank you for what you wrote for all to see & read.
Author
Hi Dannette, I am sorry to hear you had some bad effects from radiation treatment – was this for your feet or some other health condition? I hope you find some treatment to help. There can be many causes for hair loss and the solutions are many.
Hi I am newly diagnosed. In right palm & right food. I dont see anything in foot but I am limited in using it. Too long & I cant walk for a day or 2.
This is what im starting.
Ifrared/message all over body including hand & feet.
Dr. McDougalls starch diet cause I enjoy eating . (No meat diary egg cheese no oils)
Nascent iodine iternally
Lugol’s iodine on the nodules.
Does anyone see anything wrong with this regime?
Thx
Author
Hi Zandy,
We really don’t have much to go on when it comes to research so are serving as our own guinea pigs to a certain extent. Diet is very individual so has to be assessed that way, based on symptoms. You have to be careful with iodine especially taken internally on a long-term basis.
Let us know how it goes!
Lisa
I am confused as my podiatrist told me my fibroma was caused by my bad arch and constant trauma to the area. My job for 15 years requires a lot of walking and on feet all day. Is the inherited Ledderhose the same as trauma induced nodules? Can the scar tissue not be the LD and just trauma related?
Author
Hi Lisa, so sorry you have fibromas. I think the cause varies a bit from person to person given the anecdotal accounts I have read. In my case, it definitely started with trauma from running (plantar fasciitis) and pressure from orthotics and high arches in shoes. At some point, I noticed small, pea-sized, soft lumps that were painless and I paid them no heed. It was only a decade later they grew, became painful and most shoes intolerable to wear without alteration. In my case at that time, I became hypothyroid due to hormone imbalance which I believe was the trigger. So, I can’t really answer your question since I am not able to see your feet and I am not a doctor (although I think most of us with this condition are able to recognize it) but would say the likelihood is high that it is LD – did your podiatrist tell you it was not plantar fibromatosis?
It’s just a suggestion, don’t know if it will help; but when I was 40 I shrunk a cyst on my ovary with Una De Gato (Cat’s Claw). I only took one capsule every night before going to bed at night and within 6 months, it was gone. These plantar fibromas from what I’ve read are cysts also – so maybe the Una De Gato would work. I took the Nature’s Sunshine brand – capsules were 540mg. I believe. I’m fixing to order some for my husband because he has one of these on the middle bottom of his foot. If you’d like to email me later on, and ask if this worked please email me at: [email protected]
Good luck to you all.
Author
Interesting idea – will look forward to hearing how it goes with your husband’s nodules!
Lauren, yes podiatrist said it was plantar fibroma. I now have another one in the arch of my other foot. I’ve had one for 6 years on right foot…painless and still small. I have friends who also have them too. Is it a guarantee that they will grow? I’m worried about it getting bad someday and not being able to walk which my podiatrist thinks I’m over-reacting. No one else in my family ever had these so I don’t know how trauma to foot turns into a disease?
Author
Trauma to foot does not cause plantar fibromatosis, having the wrong genes does, often (maybe always) combined with some kind of stress to the foot or inflammation. The science of epigenetics shows that you may have the genes, but may never get the disease.
There is no guarantee they will grow. I would avoid putting pressure on your nodules, maybe cut holes in the insoles of your shoes in the area. I wish I had taken more care when they were small, soft and painless. I hope you remain stable, best to you!
Hello Laurel,
What are your thoughts on drinking Lilly of the Valley Aloe Vera Juice? I have been drinking it for several months, 2oz a day with magnesium powder. Will the Aloe Vera cause the DD and LD to grow?
Thank you!
Judy Colvin
Author
Hi Judy,
Thanks for your comment. I believe anything that improves your general health, lowers inflammation and strengthens your immune system will be helpful for LD and DD. Aloe vera juice is anti-inflammatory, great for your immune system, great for digestion – just look for one without additives and preservatives, keep it in the fridge and use it up quickly. It is also great externally, fabulous for your skin!
100 percent agree! Diet is key, I’ll def check out your book. Have you delved into Gundrys work on lectins? I am getting ready to start phase one of his protocol and am confident I’ll see improvement to my fibromas. I found this interview the other day… a basic intro to his research, studies and findings. FAB stuff! https://lectinfreemama.com/2018/03/26/autoimmune-remission/
Thank you very much for this article I think it is very accurate. I have been investigating Ledderhose for months and I do believe clean eating is one of the keys to alleviating this condition. I stopped eating processed foods, sugars and red meat last November and it has made a world of difference, my nodule has flattened out significantly and the pain has been more manageable . Your article gives me hope that I am on the right track. What has also helped tons is stretching daily my leg calves and legs, but no massage or touching the nodules as that just awakens the monster. Lots luck and thanks again for this wonderful article.
I am here from the Mobility Mastery Facebook page, because there was a person who posted on there who had this condition. As I read your article, Laurel, I thought that with the changes to your gait for so long dealing with this problem, I wondered if self myofascial release might help. Plus with some of the hand problems, sometimes you can’t do anything with the hand directly (think about this from the foot angle as well) but if you can free up those masses of fascia elsewhere, it can free up circulation to go to areas that need healing. This type of body work seems sensible, because it does not target a painful area, which might irritate it and prevent healing. Rather, it targets areas that might block the painful area or keep it tight (that is kind of generalizing though.) As much as I try all these fascial pin and stretch deals though with this program, and diligently stay on my own herbal remedies which are sometimes a shot in the dark, your article also reminds me that inflammation is not going to really improve without some major diet changes. Plus the fact that without stress relief it won’t do much good either.
Author
Hi Ksenia, thanks so much for your comment. Since our fascia throughout our body is all connected, myofascial release in an area will definitely help with loosening up other areas. I know I have had very tight gastrocnemius which affects the feet.