Health Challenge: Plantar Fibromatosis (Ledderhose Disease) related to Dupuytren’s Disease

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I have a confession to make: I love shoes. They are little pieces of art to me. Sadly, I am currently faced with getting rid of most of my footwear – not that I wore the ones pictured above very much. Those were more for sitting and admiring on a shelf – too painful to actually walk in!

Another confession: I suffer from a rare connective tissue disorder that has recently become exacerbated, so that the nodules/benign tumours I walk on every day have grown – quite a lot. It is a progressive, irreversible condition that causes pain and disability. Up until now, I have mostly ignored it and carried on, but the recent flare-up of my disease has forced me to make some adjustments.

I am very sad to have to purge my collection of shoes, like Dansko clogs and cute flip-flop style Birkenstock sandals (pictured below in 2014 – love the leopard print), as I can no longer wear anything with an arch, especially a hard arch like my favourites mentioned.

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I think it is about time I shared with readers the struggles I have been having with my health and how I began my journey to try and improve things through diet and lifestyle. I am now 56 years of age and despite feeling more energetic than I used to (somewhat more functional), I still have to deal with the fallout from years of unhealthy eating and living a crazy, stressful life. Having adrenal burnout, thyroid problems and chronic pain means I have had to drastically limit what I do to allow healing a chance to stick.

My most pressing concern at the moment is the aforementioned genetic condition, usually triggered by some sort of trauma. It is known as Plantar Fibromatosis or Ledderhose Disease (my brother has it in his feet plus Dupuytren’s Disease which is basically the same disease in the hands).

Imagine walking on rocks about the size of grape tomatoes. It becomes really painful after a short time, and continuing to do so means aggravating the nodules so they become even bigger. Unfortunately, the only proven treatment is cancer treatment – radiation. This has been proven to halt the disease, at least for awhile so I am not ruling it out entirely – the consequences of not treating are pretty dire with life in a wheelchair a distinct possible end point. For now, though, I am trying to do everything I can to heal without resorting to radiation therapy. In the photo below, you can see the aggravated, raw nodule (there are actually a couple of them grouped together) in my left foot.

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I believe it all started when I was into running (bad idea) and suffered from plantar fasciitis and Morton’s Neuroma. I remember noticing a tiny, pea-sized nodule in the middle of my arch but did not realize at the time it was not normal. I think things were exacerbated by poor shoe choices, all orthopedic types of shoes generally, but way too hard and high in the arch so rubbed on the tiny nodule.

After a recent trip where I was unable to keep up my health lifestyle and nutrition routine I experienced a flare-up of symptoms and growth of the nodules, so I am now working on calming things down with a number of alternative modalities. I have also recently discovered a knuckle pad on one of my fingers which is a precursor to Dupuytren’s so I am very interested in fending off that problem if I can with an anti-inflammatory diet.

I spent over a decade completely ignoring my health – after my morning commute, breakfast was coffee and a bagel with cream cheese – no fiber, not much nutrition and no protein. I spent much of my day (at least during the week) sitting, typing and guzzling cup after cup of coffee to boost my flagging energy. Lunch was haphazard, but usually consisted of some form of wheat with cheese like pasta or pizza. Sugary treats and chocolate were a staple. Dinner was similar to lunch, often fast food, with nary a vegetable in sight. I was a very unhealthy, processed-carb and sugar vegetarian with a way too fast-paced life.

I managed to get away with it (sort of) for awhile but eventually became chronically exhausted. After a couple of car accidents (where I was hit from behind) I got a diagnosis of Fibromyalgia in addition to the Chronic Fatigue Syndrome I already suffered from.

It was when I had my first child at 35 that things really got bad. That is when my “bread and cheese-a-tarian” diet and stress-filled lifestyle caught up with me and I crashed. The birth was problematic in that my son was overdue and there was meconium in the amniotic fluid. Then, I almost immediately got mastitis and at my six-week Lamaze reunion I was admitted to hospital with what proved to be septicaemia (blood poisoning) and an abscess from breast feeding. During surgery for the abscess, an artery was inadvertently cut and the next morning was traumatic – when the dressing was changed, blood began spurting everywhere and the nurses were unable to stop it. The doctor finally showed up and stopped the blood loss and told me I was lucky I was in hospital hooked up to an IV as opening it up when I suddenly lost all the blood saved me. I had to beg for a breast pump to keep things flowing as I was not about to give up on it at that point and didn’t want more clogged ducts. I remember having to set alarms to wake myself to pump and the indignity of having some guy mopping the floor around my bed as I did so.

I managed to keep pushing myself to do everything that I thought was expected in life until my second child was born 5 years later. At that point I was having trouble functioning. I ended up in emergency with severe pain that may have been Shingles with an atypical rash (the neurologist I saw afterward disagreed with the emergency room physician’s diagnosis) but I have always suspected something to do with my adrenals as the pain emanated from that area. I had frozen shoulder, once on each side separated by a few years (which I now know is related to Ledderhose Disease). I saw all kinds of health practitioners and learned that I had adrenal fatigue. I suffered chronic pain in my spine due to arthritis, herniated discs, torn glute muscles and tendinosis after a rollerblading accident, several 1 cm vertebral hemangiomas, a fractured tailbone, osteopoenia and scoliosis.

Fast forward about 15 years and I am still dealing with the fallout of not listening to my body for so long. In 2011 I went back to school and continued my study of the body & nutrition that I had initially pursued by doing part of a Bachelor of Science in Kinesiology. My favourite course while studying with Simon Fraser University was Nutrition so I chose to study that in-depth, graduating in 2014 with a Diploma in Applied Holistic Nutrition.

I am not saying never, ever to radiation as that is preferable to being unable to walk. It has been proven to work to halt and sometimes reverse the disease a little with minimal adverse effects. The amount of radiation is very small in comparison to cancer treatment and it is in an area, the foot, where no internal organs could be affected locally. I just need to try to get to the root of the problem first and improve things with natural means if it is possible.

My chiropodist has been giving me LED light and cold laser treatments. I have been applying SSKI (a super saturated form of potassium iodide) and DMSO plus castor oil (this can be used in hot packs as well) to my nodules and eating an anti-inflammatory diet. Apple Cider Vinegar has also been mentioned as a possible treatment (since it has enzymatic effects) so I might try that as well, with the DMSO to drive it into the nodule/benign tumor. Some of my treatments include largish doses of PABA, Vitamin E (the best one is A.C. Grace Company Unique E), turmeric (for curcumin’s anti-inflammatory effect and natural TGF Beta inhibition), NAC (n-acetyl-cysteine) and avoiding shoes with arches so I don’t aggravate the nodules. I am also trying some Chinese herbs on the recommendation of my TCM doctor plus powdered sea cucumber (also known as sea snail, which is just as icky as it sounds) as he tells me I am very weak.

Another factor in my flare-up is subclinical hypothyroidism and low iodine levels so another supplement I have been taking is iodine (my functional medicine doctor prescribed Iodoral). If you are not sure you have low iodine levels, try eating some seaweed on a daily basis instead as you can get too much. I also have Raynaud’s Syndrome, another thing I discovered when breastfeeding – interestingly, both thyroid problems and Raynaud’s are connected to Ledderhose Disease.

I would like to also share that for anyone else dealing with this little known but not as uncommon as you might think disease (it does seem to be more common in certain ethnic groups, especially those with Viking blood) there is a wonderful support group on Facebook plus a website. If you or someone you know is suffering from this disease, you will find a wealth of information and support on the Dupuytren’s Disease Support Group on Facebook.

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Comments 55

  1. Ed

    Yep. Got it too. What you describe is a great description. Good luck with it. Glad to know there are others.

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  2. Brenda Fortner

    Laurel, thank you for sharing your story. I suffer from Ledderhose disease in both feet. I admire your drive to try treating this in a holistic manner. I sure hope that you find that sweet spot that causes your nodules to cease their growth and even reduce in size. I agree that an anti-inflammatory diet may contribute to some of the underlying issues with our health. I resorted to radiation therapy in 2014 since I was so close to being a recluse and being reduce to being home body at my young age of 54. May 2016 be a year of Ledderhose healing for you!

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  3. Rick Rabior

    I have it in my hands and feet. Nearly the size of a ping pong ball, I went through a series of injections at the podiatrist, the fibromas got smaller for a while, but they’re either enlarging again or I’m growing new ones. The whole radiation thing is something I’d like to use only as a last resort. I’m a musician, but until the ones in my hands limit my functionality, I won’t seek treatment for them. Hard soled shoes from now on for sure…

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      Laurel McBrine

      Oh dear, I am so sorry to hear of your nodule growth. Being a musician who needs their hands, I am sure it is most distressing for you. I can identify and hope that dietary modifications and topical application of various potions plus avoidance of manual irritation from footwear may calm things down.

  4. Lynda de Vries

    Hi Laurel, I thought I would share, and I know it is not the most popular treatment, but I have Ledderhose on both feet, and dance regularly. So, when it seemed like dancing was doomed, I opted for Cortisone (did the full immobilize for 3 days afterwards) and I must admit I have been very pleased. Recent ultrasounds measured the nodules and those on the one foot have actually reduced in size and those on the other foot are static for a year. I do not experience pain from them, although I may have to attribute a painful second to little toe that is curling under to contractures – not sure. I know people can get desperate, so thought I’;d share that I have had success with cortisone – been good ten years now…since first noticed a nodule.. All the best Lynda

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  5. Ruth

    Thanks for this thoughtful post Laurel. I too am keen to learn whether there are more ‘natural’ ways to treat plantar fibromatosis. I am interested that you tried cold laser. Do you know if this might have helped? Were you concerned that it might encourage growth of the fibromatosis? I also have this condition, and it is very painful. I hope you are finding some relief.

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      Laurel McBrine

      Hi Ruth – thanks for leaving your comment. I am sorry you are also experiencing a lot of pain. I did have a lot of cold laser treatments – the chiropodist I saw used the laser after a red LED light. The treatment did seem to help with pain but I am not sure whether they helped or hurt when it comes to growth.I did start to suspect that the red light part of the treatment at least was not a good idea – ultimately, I stopped doing it because of that.

  6. COHikerGirl

    I could just cry, reading what you’ve been through. And on many points, I totally relate all too well.

    I am of both Scandinavian and Germanic descent (both of which have high prevalence of Ledderhose Disease and DuPuytren’s Contracture). Both my parents have DePuytren’s Contracture, as does my eldest brother. Both my father and my eldest brother have Ledderhose Disease, as well. I very recently self-diagnosed both conditions (due to family familiarity with them), since confirmed by my Podiatrist. Trips to a hand specialist and an Orthopaedic Surgeon are upcoming.

    Precipitating Factors:

    1) After a car accident in December 2002, 4 years of resultant limping engendered plantar fasciitis in my left foot. Spine surgery (L5-S1 Diskectomy) in December 2006 greatly reduced back pain and a crushed sciatic nerve, and thus eliminated the limping. Shortly thereafter, a single cortisone shot also permanently fixed the plantar fasciitis (after all, the root cause of the limping was now gone).

    However, a small, firm nodule remained at the center of my left plantar fascia ever since then, tender to the touch during massage therapy sessions, and which never loosened despite massage. However, it did not grow, was not painful at any other times, and caused no problems, so I chalked it up to scar tissue.

    2) In July 2015, my too-old, too-light hiking shoes resulted in my getting a stone bruise on a rocky trail while backpacking with a heavy load. The bruise was located (classically) at the base joint of my second toe (next to the big toe) on the ball of my left foot. It never healed properly, and over time became more and more painful (tenderness and pain when walking, sometimes throbbing even with no weight on it, growing numbness and ‘zinging’ pain during hikes, and resultant limping).

    In February 2016, I was diagnosed with metatarsalgia. After the prior months of growing pain, a single cortisone shot removed all pain for a period of about a month (even while trekking in the Himalayas), but the pain returned about a week after my return home in April 2016. A second cortisone shot at that time had no helpful effect whatsoever. I was now additionally diagnosed with Morton’s Neuroma (confirmed by Mulder’s Sign that had now appeared).

    3) However, within a few days of this last diagnosis, and because I was considering and exploring various inflammation-related troubles I was having then, I recognized the first nodules of DuPuytren’s Contracture on my right little finger, and two small but visible lumps of Ledderhose Disease on my left plantar arch, centered right where the ‘hard spot’ had been for so many years prior. Neither condition had been present in the past — I believe they both sprang up at nearly the same time, just recently (i.e., sometime over the course of just the past few months).

    Speculations:

    I suspect, first, that the initial injury to my foot (plantar fasciitis due to limping) and its resulting scar tissue may have inhibited the ability of my foot to heal from the much-later, subsequent hiking stone bruise, resulting in chronic metatarsalgia and, eventually, the further development of Morton’s Neuroma.

    I strongly suspect that this second injury to my foot (stone bruise from hiking), a year ago, precipitated not only the obvious metatarsalgia and Morton’s Neuroma, but also the expression of Ledderhose Disease. I also suspect that the expression of Ledderhose Disease is tied to and associated with the simultaneous appearance of DuPuytren’s Contracture.

    I am concerned about the association of both DuPuytren’s and Ledderhose with ‘frozen shoulder syndrome,’ because my right shoulder is giving me pain at night that clearly inflammation related. Greeeeeat!

    Now Where?

    I have an MRI scheduled, but have not yet made a choice between the treatment options available. After watching my Dad’s myriad operations and recurrences, I am totally hostile to the surgical options. I am only now beginning to explore the anti-inflammatory diet options, as an ‘assist’ to avoid recurrences and to perhaps treat the current expression of these diseases. Any further referrals / resources you might suggest regarding “where to look for a reputable anti-inflammatory diet regimen” would be greatly valued!

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      Laurel McBrine

      Thanks so much for sharing your story COHikerGirl – it is a most frustrating disease. I have recently had some good results with water fasting but it remains to be seen if the improvements will hold once I re-enter the real world. Stay tuned for more on that and thanks again for reading.

    2. jenny

      Try fasting. Start slow like a 16 hr, then increase. A prolonged fast is very helpful for many things. I’m 36/f with Ms. I fast often to lower inflammation. I also has a pituitary tumor that I’m hoping to reduce over time from fasting. I have given up grains except white rice that is lower in toxins. Trying to get as close to Paleo diet as I can. My husband is a diabetic with pf. Just ordered him a tens unit to see if it will help his feet. Good luck and God bless.

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        Laurel McBrine

        Hi Jenny,

        I agree 100%. I did a 16 day water fast which I wrote about on this blog. As I have mentioned before, when it comes to diet, what works for one person does not necessarily work for another and can be assessed based on symptoms. I am currently experimenting with dry fasting, having done one 36 hour dry fast and now doing a daily intermittent dry fast of around 16-20 hours. It seems to have drastically cut the inflammation in my feet. Best to you and let us know how your regime works out!

  7. Nicola

    Hi Laurel

    I must say I am really speechless at this moment in time, as I have been looking for some answers in which your story has given me. I am at a stage in my life where I have been more curious in to trying to find answers. what you have experienced in regards to your health, I have experienced some of the same symptoms. I am 27 and I have had ledder horse disease since I was 5. The lump started of on my left foot and I underwent 3 operations. No surprise to say the least the lump always grew back and it has been something I have lived with. The last operation I had I was 12 and, Through time I have just gotten on with things and I have just lived with it.

    In more recent years about 4 years ago I developed these lumps on my fingers. I must say personally, I want to thank you because no doctor or nurse has never been able to tell me what is wrong with my fingers. I have gone to hospitals, doctors appointments and have had X-rays as they though my finger were broken… However there x-ray scans proved that there was no broken fingers and I think I would of known myself if they were. From typing knuckle pad finger into google images from you stating this, I can honestly say to you I have two knuckle pad fingers. It’s actually quite sad that I have left on three occasions at different clinics with no answers. It shows me that the health system is a total disgrace and that they should be ashamed. it’s the first time in 4 years that I have had an answer for it and I can not believe that this it is related to the nodules on my feet. When I say feet I have also recently developed a fairly large nodule on my right foot. My health has been awful and has deteriated more faster recently than normal.

    To be honest it’s scary as the years go on I feel like I a,m going to suffer as I really do feel my feet more painful than ever, whether I be walking or sitting. it is just an irritating pain. I also suffer toe problems particularly on my large toes. I feel personally that this is also to do with the lumps on my feet. I never show my feet off as for me I feel Uncomfortable to do so. what annoys me more that the only options I ever get are operations. To be honest I find it pointless as for me they have told me in the past, if they try to remove the full lump it could leave me with a 50/50 chance of not being able to walk again, as it’s too far gone.

    I am the kind of girl who believes that most doctors know there is a cure but they don’t want to inform people of this as we live in a system where it’s all money to them. I have priced certain supports for my feet and they charge ridiculous prices for someone who suffers a disease that they did not wish for. I just want to thank you personally, your story has really inspired me in getting answers that I couldn’t get of a professional doctor. I have also been reading into ACV and I really hope this works for you.

    You have truly amazed me

    Nicola

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      Laurel McBrine

      Thanks so much Nicola for sharing your experiences as well. I am sorry to hear you are also dealing with this. Dupuytren’s and Ledderhose (Plantar Fibromatosis) are thought to be different expressions of the same disease. It is such a difficult disease to deal with where there is no cure and no treatment that is ideal. I will be posting soon on some good results I had with water fasting. Not an easy route, but it did put a very quick halt to the severe pain I had been experiencing, likely due to inflammation. My stage of disease is also pretty advanced but I do believe there are a lot of things we can do to minimize the pain. Thanks for reading!

  8. Sandra

    I read your article i too have this in both my feet..just dianosed 2 days ago…i read that magnesium 500mg before bed and also vitamin b5 and fish oil suppliments all help with this…im going to try im also going to try the steroid injections what can i lose…the pain is unbearable and i need to work as i support myself….

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      Laurel McBrine

      Thanks for your comment Sandra. So sorry to hear you are also suffering with this disease. The supplements you mention are great if you are deficient in them and in that case will help your general health which will improve all health conditions with which you are struggling. There is no “evidence” it will directly improve LD though. Supplementation is an individual matter that can be ascertained by a practitioner who is knowledgable with a full health history and questionnaire about symptoms. Studies have shown that about half of us are deficient in magnesium, so that is very common, mostly due to the lack of nutrients in our diet. One cause it that even if we eat enough of the right kind of vegetables (which most people do not), the soil is depleted and chemical fertilizers and pesticides used on conventional farming are also a factor, so the food which ought to contain these nutrients is also deficient.

  9. Einar

    I noticed a single Dupuytren’s nodule about 5 years ago in my right palm..it never really bothered me until about a year ago…Then it slowly started to form a cord, now it seems the disease has started to get more aggressive in the last 5 months. I’ve got a nodule and cord in my left hand and I also started to deal with Ball of Foot swelling like Metatarsalagia. Last month I found my ankles started to bother me and now I can feel a single tiny Plantar fibroma under my right arch. I know it’s the start of Ledderhose disease…, Last week I found a local Podiatrist that would prescribe Verapamil gel (a Calif. HMO wouldn’t prescribe it) and that’s currently the direction I’m going with my feet..I figure when my hands get to the point where my fingers need released I’ll get the Xiaflex injections to release the contractures.
    As far as the anti-inflammatory diet..I say totally commit to it. It will help your body and mind. The other thing I would do is start doing daily Urinalysis to monitor your body’s PH level. You want to keep your body’s PH level more on the Alkaline side, ( 7.0 to 7.4 is best)..If your PH is constantly on the Acidic side,(below 6) that’s how inflammation gets started.. . You can get a good Urine test (50 strips) for about 10 dollars, I use Areta strips because they also check Glucose, Bilirubin, Ketones, Proteins, Leukocytes and Blood…These urine strips will tell you what your body is doing on the inside…..I found I can keep my PH level in the 7.2 level by eating fruits and drinking a teaspoon of baking soda at night…I noticed almost immediately my complexion cleared up and I didn’t deal with my left ear ringing when I try to get to sleep..
    I wish you the best, Be well, Einar

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  10. Bonnie Overby

    I have dupuytrens in both my hands and feet. What is bothering me the most is a neuropathy in both lower legs. This started with soreness on the insides of my ankles and now numbness half way up on the insides of my shins. I have had some limited blood work done to rule out diabetes or anemia. I am on medication for hypothyroid. Has anyone experienced these symptoms with Ledderhouse disease?

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      Laurel McBrine

      Hi Bonnie, thanks for your comment. I am sorry you have this in both hands and feet. I have had neuropathy occasionally too and it is very hard to deal with. I was also hypothyroid for a time but after my long water fast I have not needed the medication. I know that cold extremities goes along with a sluggish thyroid and perhaps the burning feet do too, but that is just based on my own experience, as I am not a doctor.

  11. Eddie Davis DPM FACFAS

    Effective treatment of Ledderhose Disease is based on understanding the disease process. Formation of fibrous tissue is a normal process but Ledderhose and its related diseases represent a localized failure of scar tissue or fibrous tissue modulation.

    The body breaks down fibrous tissue utilizing enzymes targeted at such tissue.
    The goal is to assist or supplement that process via the addition of such enzymes.

    For more information see: http://www.ledderhosedisease.com/

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      Laurel McBrine

      Yes, I agree. Thanks for your comment. As mentioned in the post, I have used proteolytic enzymes extensively. Fasting also promotes autophagy and I have personally experienced shrinkage of the nodules after fasting.

  12. Kelly Hawley

    I also suffer from numerous nodules in both hands, (had surgery last year to straighten index finger) and Ledderhose in both feet. My foot nodules are the size of tennis balls and is becoming very painful to walk , much less work. I had surgery on my left foot years ago which put me in a wheel chair for 3 months. 10 years later they are all back and double the size. I am 54 years old and have worked as a Registered Medical Assistant for 34 years and finding it almost impossible to be on my feet or wear gloves.
    I may have to look into the radiation before it gets any worse.
    Kelly H

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      Laurel McBrine

      Tennis balls! I can’t even imagine, how awful. I guess you have sadly experienced the most common result of surgery – regrowth that is even worse. I am so sorry. I have been thinking that, theoretically, if you can find a surgeon and oncologist to cooperate, for some people surgery FOLLOWED by radiation might be an answer – get rid of the lumps and then prevent their re-growth, at least for a time.

  13. Marsha Weinrich

    I am so thankful for your post! During the past few months the arch of my left foot was bothersome. I chalked it up to being arthritis since it runs in my family . But when I actually touched the bottom of my foot I felt a lump the size of a marble . Needless to say I have not been thrilled about what I have read online. I was hoping a little therapy and it would just go away. I’ve gone to multiple doctors but always walking out more perplexed because their technique of dealing with it are polar opposites. One Dr said to cushion the area around it, roll my foot on a frozen water bottle and to think about Cortizone injections. The chiropractor wanted to do deep tissue massage, hot foot soaks and acupuncture. The last thing I want to do is make the nodule get bigger. I know an anti-inflammatory diet would be good for my entire well-being. I am so addicted to sugar and know that will be a big hurdle. But if I had to pick walking over sugar walking wins! Praying in the near future some treatment will help us all.

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      Laurel McBrine

      Hi Marsha! So sorry you have this disease also. Thanks for your comment. Do not allow anyone to vigorously massage your nodules. I did and they had a growth spurt, sadly just enough to now touch my insoles when wearing shoes and make walking more painful. If you roll your foot on a frozen bottle, it may be soothing, but do it gently for the same reason of not stimulating those fibroblasts! I think hot/cold foot baths are a great idea and have done that with good results. Getting off sugar (and all processed foods, especially simple carbs) would be very helpful to reduce inflammation. I am not crazy about processed food at all, but in order to transition to a better diet and kick the sugar easily, low carb bars and stevia-sweetened protein powders can be helpful in the short-term. I make a yummy chocolate shake when a craving hits with raw plant-based protein powder, cocoa powder, nut or coconut milk, ice and half a frozen banana – delicious! Add the protein powder last so you don’t denature it. Half an avocado is a good substitute for the banana if you want to get of all sugars.

      We are all biochemically unique to some degree so what works for me might not work for you as well, but please look up my post on the basics of an anti-inflammatory diet for more info about what to focus on. Best to you and keep in touch, I hope you get some relief.

  14. James McD

    Hi Laurel –

    Have been dealing with Plantar Fibroma in my left foot for a few years now. Active all my life. Though annoying and tender, I have continued to exercise the same amount, though I run less distances. I have been getting cortisone shots into the nodule every four months and it has kept the growth in check. Recently, I’m wondering if it has started to inflame again and have been doing some proactive research on all sorts of options. Surgery is obviously out and radiation would be a last option at this point. For now I will continue stretching and having the shots a few times per year.

    My question to you is in regard to dietary changes and what people have found success with. I’ve read that low carb diets can help and that reducing/eliminating sugars can help as well. Caffeine, alcohol, etc… make sense to reduce (if not totally eliminate). Any other natural treatments that you have had success with? I’m not in significant discomfort yet but from research I know there is a high chance of it coming to that, so I’d like to be as proactive as possible while it is still manageable.

    Thanks in advance. Nice article!
    Jim

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      Laurel McBrine

      Thanks, Jim, for stopping by and leaving your comment. So sorry to hear you have a fibroma in your foot but yay to you for continuing to be active. I think that is the best approach too.

      Some people do well on a low carb diet, at least in the short term. I am not sure it is a good idea for everyone as we are biochemically unique due to our genetics. Eliminating alcohol and sugar, I would say, is essential other than very special occasions – and then, take note of how you feel the next day to judge whether it is worth it. I have written several posts detailing what I have tried, just use the search bar on the blog to find “Dupuytren’s” and they will come up for you. Please check out also my post on the basics of an “anti-inflammatory diet” for a great starting point. An elimination diet is also a good idea to determine if you have any intolerances/sensitivities to foods that are causing inflammation. Fasting has helped me keep the inflammation under control – I did a lengthy water fast after being in so much pain I was almost unable to walk at all and within a few days I was pain free and the nodules had decreased in size. This is something to discuss with your doctor as some people can’t fast or should not do so. I continue to practice intermittent fasting on a daily basis.

      I had lumps for well over a decade with no pain and only this past year did it become a problem due to an elective medication I began taking. I discontinued the meds and am now working on keeping things stable. Unfortunately, genetics may load the gun for us, but what we do pulls the trigger and once activated, it is difficult to get dormant again. Prevention is the key to managing this disease and you are wise to be thinking along those lines. Despite the hopes of many people that a cure will be discovered in a pill that a doctor will hand out, I think the cure lies in taking responsibility for our own health and doing everything we can to keep inflammation at bay.

      Best to you and please let me know how it goes! Keep moving 🙂

  15. Patricia Read

    I have Dupuytrens in both hands and have had both operated on, one needing a skin graft, which has released my fingers. Almost two years on they are still fairly straight, although nodules appearing in left palm, but not to much of a problem at the moment. However, ten months ago I was shocked to notice a nodule in the middle of the arch in my left foot about the size of a pea, and knew immediately what it must be. Until a week ago I had no pain and no further growth, but suddenly I woke with pain which is worse when flexing my toes. It is bearable at the moment but has been fairly constant for the past week. When doing some research, the supplement Glucosamine has been mentioned as possibly being a contributory factor in Dupuytrens. I’ve been taking 1500mg per day for years for my joints, and at 70 have little joint pain, but I’m now wondering if this is causing my Dupuytrens to be worse. Since being diagnosed I’ve assumed that this is genetic as my father was a Scot and also had signs in his hands, although it was not very bad. My sister has a lump slightly larger than mine in exactly the same place in her left foot, but has no pain, and her doctor has diagnosed it as a ganglion cyst, although I am sceptical about this. She is also taking 1500mg of Glucosamine daily. I wonder if anyone else has any information on this. I have decided to stop taking this supplement.

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      Laurel McBrine

      Hi Patricia,

      So sorry to hear what you have gone through with this awful disease.

      I would also doubt the ganglion cyst diagnosis. Most doctors have never seen Plantar Fibromatosis and, unfortunately, we the patients necessarily know more about it than they do. Even my chiropodist has only seen a couple of cases over three decades!

      I also have avoided glucosamine, as we really don’t know and the theory that it might aggravate the disease (whether true or not) is enough to make me stay away. There are other ways to keep your joints healthy, including exercise, achieving ideal weight, getting enough Vitamin D and essential fatty acids, eating a high quality diet and dealing well with stress.

      Many people have difficulty digesting and absorbing this supplement, it is quite often upsetting to the stomach and some people have found it affects blood sugar levels adversely. Even if you can digest/absorb it, only a small percentage (perhaps 15% or so) is utilized by the body. In addition, anyone with a seafood allergy must stay away as it is made from shrimp.

  16. Heather

    Hi Laurel, Thank you so much!! I am curious if anyone knows about Cryo surgery for the Ledderhose and where to get it done. Also has anyone tried the Hyuralaurinase injections?
    I am 60, and have had the nodules on both arches since childhood, slowly growing, only recently after a regime of deep massage, they have enlarged and become troublesome. I had to get cortisone to decrease them on one foot, but they are still there, so I am doing everything suggested for “maintenance”. My podiatrist uses e-pat shockwaves and laser to soften them, but I do not know if it is a waste of money. Perhaps the Castor Oil packs are just as well. How exactly do you make the DMSO and SSKI mixture. I want to try it.
    I am beginning Acupuncture for the Raynaud’s. I have all the symptoms: Raynaud’s, ledderhose, Dupuytrens…never knew they are related. Thanks for any new info. I am a vegetarian, all organic, and into alternative medicine since I was 18.

    1. Post
      Author
      Laurel McBrine

      Hi Heather, thanks for leaving your comment. I had the same experience after deep massage of the nodules. I deeply regret trusting that this therapist knew what she was doing, as I also experienced growth. From what I have learned, there has been mixed results with all of the interventions like cryosurgery and injections. We are all guinea pigs.

      For me, stress, eating foods that are inflammatory and trauma to the nodules (even slight pressure from the wrong shoes) have been the triggers. To help people figure out what might be most helpful, a full health history and symptom review is needed as diet is individual due to genetic variation. I also eat a mainly plant-based, mostly organic diet with tons of veggies and fermented foods, but do have to watch that I get enough protein (lots of soaked beans, tempeh, nuts, seeds, greens are mainstays) and stay away from anything processed, most dairy, wheat, sugar (even natural like honey) and a lot of other fun foods. Some people have found that a low-carb approach works for them. I have noticed my flare-ups usually come following a cheat day and/or wearing shoes that have even slight pressure on the nodules.

      Thacker’s Formula is just a mixture (DMSO, castor oil and apple cider vinegar) some guy came up with for Peyronie’s Disease, the exact recipe you can probably find by googling, I do not recall exact amounts although it is mostly DMSO. I tried it for a long time (used up the whole batch I made) saw changes in my skin (dry, flaky) but no change in the nodules. You have to be cautious with DMSO as it will increase absorption of anything on the skin. I think castor oil packs would probably be more effective for healing and circulation.

      1. Post
        Author
        Laurel McBrine

        **UPDATE: Located the recipe for Thacker’s Formula …. I don’t think it really does much to help, but feel free to conduct your own experiment!

        70% DMSO-20% Apple Cider Vinegar-10% Castor OIL.

        An easy way to mix the formula is to use three separate 10cc syringes and draw the liquid up to the 1, 2, or 7 mark depending on the liquid. Then squirt each one into a small glass bowl and mix well with an eyedropper.

  17. Patricia Read

    I have Dupuytrens in both hands and have had both operated on, one needing a skin graft, which has released my fingers. Almost two years on they are still fairly straight, although nodules appearing in left palm, but not to much of a problem at the moment. However, ten months ago I was shocked to notice a nodule in the middle of the arch in my left foot about the size of a pea, and knew immediately what it must be. Until a week ago I had no pain and no further growth, but suddenly I woke with pain which is worse when flexing my toes. It is bearable at the moment but has been fairly constant for the past week. When doing some research, the supplement Glucosamine has been mentioned as possibly being a contributory factor in Dupuytrens. I’ve been taking 1500mg per day for years for my joints, and at 70 have little joint pain, but I’m now wondering if this is causing my Dupuytrens to be worse. Since being diagnosed I’ve assumed that this is genetic as my father was a Scot and also had signs in his hands, although it was not very bad. My sister has a lump slightly larger than mine in exactly the same place in her left foot, but has no pain, and her doctor has diagnosed it as a ganglion cyst, although I am sceptical about this. She is also taking 1500mg of Glucosamine daily. I wonder if anyone else has any information on this. I have decided to stop taking this supplement.

    1. Post
      Author
      Laurel McBrine

      Hi Patricia,

      So sorry you are dealing with disease in both your hands and feet now. My brother (a carpenter) also has both, although his feet do not bother him too much. For me, my hands burn and ache but no nodules as yet, it is the feet that flared up this year. As far as glucosamine is concerned, I doubt it would be the single contributing factor to a flare-up of disease. My personal experience is that improving general health, with dietary and lifestyle improvements is important. I notice immediately when I have a bunch of sugar, for instance. Also, hormone imbalances need to be addressed. Bad footwear choices are the other thing that seems to cause a flare-up. I have taken glucosamine before, but have avoided it lately just in case. No one really knows for sure.

  18. Heather

    Thanks Laurel fro locating the Thacker’s formula. I met a woman yesterday on a bike ride who also has the nodules on her feet. A nutritionist told her to take Pancreatic Enzymes and Glycine. She has had remission but not annihilation.
    I am staring at my Dansko shoe wardrobe…bye-bye for now? Thank you so much for your blog and sharing. Funny how” others” do not want to hear about it.
    I am taking Rejuvenzyme along with Serrapeptase. I am not anticipating much change now but plan to see what happens in the months to come.
    Does anyone know anything about Hyuraloridase topical transdermal applications?
    I will start Acupuncture next week for Raynaud’s and the rest, and report.
    The Castor Oil does seem to soften them up, so I will keep that going.
    Has anyone on this blog tried the enzyme series shots from Dr Davis?

  19. Kathy

    Hi Laurel,
    I am so happy that I stumbled upon your blog. I discovered a lump on my right arch two years ago. With a sister and mother who both had sarcomas of course I panicked. I was told it was a fibroma and could be surgically removed. A second opinion from foot surgeon at Brigham and Womens in Boston said he did not recomend surgery and sent me on my way with no further support. About 8 months ago a lump appeared on my left arch. Every professional has said that they have not heard of this and so my research has been by scouring the internet. I am still very active with pain up and down. I am concerned about being proactive if possible to control the rate of growth. What struck me is your talk of Raynaud’s as I also have this and so did my mother. If you have a source for me to read, I would love to follow up. I am also intrigued by using my diet as well.
    Thank you for sharing your story. I have been at such a loss and feeling alone on this medical issue. As i notice the lumps getting bigger, I can no longer ignore.

    1. Post
      Author
      Laurel McBrine

      Hi Kathy, so sorry to hear you also have these awful lumps on the bottom of your feet. I wish there was an easy answer. I am sorry, I do not have any source, pretty sure none exist. My comments stem from anecdotal reports from people around the world on various online groups, many of whom have thyroid issues, Raynaud’s and frozen shoulder. To control any further growth, I look at symptomatology to uncover intolerances and deficiencies plus environment, to minimize toxic load. I have unfortunately found that in my case, interventions and attempts to improve the lumps (such as laser treatments and massage) have led to more growth, so I think sometimes simple prevention, leaving well enough alone is the course of wisdom.

      Since this is such a rare thing, there is no research. Most medical doctors I have spoken to agree that it is an inflammation process and repair process out of control. My approach is that what heals one thing heals all things, so finding out where you might be deficient or have imbalances will improve all health issues. Definitely start with an anti-inflammatory diet (there is an article on that on this site) and get rid of shoes that bother your nodules. Get enough sleep and balance your hormones (may need some medical/health practitioner assistance for this). In my own case, I notice a big difference when I have indulged in things I know I should stay away from (sugar, bad oils and refined carbs, for instance) or worn shoes that aggravate my bumps. As the bumps have grown just this past year, it is harder to avoid irritating them. I have had to get creative with footwear, insoles (using a dremel tool to scoop out the area where the bumps are in rubber thongs or cut holes in removable insoles, for instance) and alternate what I wear. Previously, I had tiny, painless, pea-sized lumps that did not hurt at all for over a decade.

      If I discover anything that has a profound effect on my own case (other than the aforementioned dietary changes and lifestyle modifications) I will share here on the blog. Right now I am experimenting with hot/cold soaks and essential oils. I wish you the best, please let me know how it goes for you. I hope you are able to halt the progress.

  20. Heather

    Well, I read somewhere that Pascalite Clay, MSM powder, and colloidal silver could work..as a poultice? I’ll try that one next!

  21. Heather

    Hi Laurel, I discovered some Dansko Shoes that I can wear…very comfortable..they are the “Fashion Sneakers”… worth a try. I work on my feet all day and first try was a success.

    1. Post
      Author
      Laurel McBrine

      Hi Heather, so glad you found shoes that work for you. In my case, anything with an arch is painful as it pressed on the lump in my left foot in particular since that one is closer to my toes rather than right up in my arch. I have a box full of Danskos I can’t wear any more 🙁

  22. Judith Fitzgerald

    I am 63 with Plantar fibromatosis in both feet. Went undiagnosed by two podiatrists for many many years. Finally a good podiatrist confirmed and prescribed topical verapamil (calcium channel blocker) with diclofenac(ibuprophen) and lidocaine to stop the cycle of pain as I was no longer able to walk. He has Chemistry RX, 829 Spruce street, Philadelphia PA. create the compounded formulary and apply 3x a day. I am pain free and the inflamation is down. I am also performing Myofascial Release (John Barnes style) as this fascial connective tissue is too tight with adhesions and I have been able to with my finger tips (slow gentle sustained pressure) coax the tissue to remodel and become fluid and stretchable instead of dense hard and painful. Not sure how far this will take me but I can now walk again.

    1. Post
      Author
      Laurel McBrine

      Hi Judith,

      My chiropodist has been in business for over 30 years and has seen only 3 cases, so very rare, but still a little surprising that a podiatrist would not recognize it quickly!

      I am glad to hear that the verapamil is working for you.

      I am totally in agreement about the myofascial release – I have had both that and structural integration done (also works on fascia) and it has helped for sure. Just make sure they leave the actual lumps alone as I had major growth from a fascia release treatment done with suction cups by a massage therapist who should have known better and I should not have trusted her judgment – live and learn!

      We seem to have tight fascia and that would explain the two previous frozen shoulders….sticky adhesive quality to our tissue I think.

  23. Renee

    I have very large and small nodules all over both feet. I just completed 7 days of radiation. The doctor says it will be two months before we know if it worked. I am now barely able to walk, can hardly move my toes and experiencing numbness. On anther support site a woman said her podiatrist called Dr. Eddie Davis re: enzyme injections and is now treating her. I’m going to talk with my podiatrist about this. Thank you for this important blog.

    1. Post
      Author
      Laurel McBrine

      Hi Renee, so sorry to hear you have so many nodules. I know that many people have had good results in the end so I hope that is true for you as well. The enzyme injection option is interesting, but I think very hard to access, certainly not an option up here in Canada, only for hands. Please stay in touch and let us know how things work out for you!

  24. Robert

    Wow- I am a 51 yo of European heritage. I had radiation on a nodule in my left foot about 18 months ago- It seems to have slowed down the growth, but there has been no reduction in size. I was an avid runner for most of my adult life, and blamed that for the problem. I no longer run, but am still very active. However, I also had a bad case of shingles about a year before I noticed the beginning of the pea sized lump on my arch. The shingles actually were on my neck and into my ear. This was at a time of a highly stressful period at work, Following radiation, I developed a frozen shoulder, and later I developed frozen shoulder in the other arm. This makes me think it was not the running, but a pre-disposition to the condition. I googled frozen shoulder and ledderhose, and found your site.
    Thanks for putting this out there. This really gives me some more insight into the issue.

    1. Post
      Author
      Laurel McBrine

      Hi Robert, thanks for your comment. I was a runner too. I think that is what started my problems as I had plantar fasciitis and Morton’s Neuroma along with frozen shoulder (twice). Interestingly, I had shingles too! I wonder if there is a connection…but I had an atypical rash (it was on my trunk, alternating sides) and later a neurologist said he didn’t think it was shingles – of course, that was long after the event so he didn’t actually see my rash. I believe we who have the misfortune to get this disease definitely have some genetic defects (in fact, I know what mine are since I did 23andme) in common.

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