My experience with Ledderhose disease aka plantar fibromatosis. This information is not intended to replace your doctor. Information on this blog is provided for informational purposes only. You should not use the information on this web site for diagnosing or treating.
In short my journey prior to successful treatment:
Noticed lump in foot around 2009.
Got sent for physio! And was rightly told that they could not help.
Advised to wear supportive running trainers. Note I weighed around 18 stone, so at 5ft 9 this didn't help.
2011 started to become more painful.
Had Steroid injection and it helped for a few months then it came back angry.
NHS Foot specialist advised that surgery would likely result in it coming back so not worth it except as a last resort.
I was working towards a PhD in Cancer research so delved into the science and started this blog.
Referred for and fitted with orthotics which helped a little as well as having diagnosis confirmed with an MRI.
Became super painful but told other than surgery, which is a last resort, there was nothing the NHS could do.
I started using a walking stick to get around and take some weight off of my foot.
My wife found radiotherapy with Dr Shaffer as an option.
I was treated in May / July 2012 and combined with moving away from the lab to a desk job I found myself recovering quickly.
Throughout 2013 my foot continues to improve to the point where you wouldn't realise I had it.
The Ledderhose:
So firstly the Ledderhose. In terms of pain I am still in a great place, I have very little if any pain from the Ledderhose disease. I can sometimes feel an ache around where the nodule is when I have been doing a lot of running but nothing prohibitive. Now you will notice that I said where the nodule is... In the last 6 months or so the nodule has grown again. So it was very small and dormant for the best part of 9-10 years and in this last year it has grown a little. It might even be bigger than it was before however, even with my running, it is not causing pain above 1/10 let alone the 9/10 I was getting on every step before.
In terms of my journey since the start of 2015 I collected a whole bunch of patient data and presented the results at the Dupuytren's Symposium in 2015. That was a great experience, I got to meet so many specialists and live blogged about the conditions (which was surprisingly popular!).
My Diet:
Something that can be very divisive but I am convinced that a proper human diet is high meat, low carb and that this isn't even bad for the environment or the animals. This might sound crazy but I, and many others, have done the research and there is just so much money in food and keeping people sick that it is had to impossible for the required research to disprove it to take place. You air these views and are seen, at best as being eccentric and at worst as a conspiracy theorist. Speaking from my own experience, and from many others I have spoken to, the lower in carbs and plant matter people go the better they feel. There is a transition period and a mindset adjustment but it just works.
Now it might seem odd to mention this on a blog about a foot condition? Well I just wish I knew what I knew now back then. If I had weighed 10 stone (which I do), rather than topping the scales at 20 stone(which I did), had I known how great carnivore (zero carb) can be for auto-immune and its anti-inflammatory effect, could I have saved myself the cost and impact of the radiation therapy and years of stress? My gut tells me probably not but my brain and the results I have had suggest that it would have made everything much smoother, more effective and honestly I do wonder if I had been low carb my whole life if I would have even developed the condition.
I say that because of the massive impact that reducing carbs has had on my physical health and that of my wife. I think it is shocking that we are being pushed more and more onto a plant based diet and despite these shifts the world continues to get less and less healthy. Anyway I won't say anything more on this other than to say to get in touch if you have any questions.
Exercise:
Obviously back when this condition was bad I could barely walk and my physical activity was massively hampered. Looking back I wish I had done some weight training or something but motivation was severely lacking. Now I am one of the fittest people I know. I do a lot of weight training and am comfortably able to do pull ups etc. and I am one of the the best local runners, normally finishing in the top 3 at my local parkrun. In fact out of the 15,000+ people that have done the parkrun I am in the top 75 of all time. I try to focus on the process and mental health as well and last year ran 2750 miles, many with my daughter on her scooter, with my wife or with the dog. Since my treatment all those years ago I even (badly) completed a marathon for the British Dupuytren's society and still proudly wear my BDS running vests now.
The Treatments:
Honestly not a huge amount has changed. I would love to be able to say there have been advances and there are some great new injections but the treatment landscape looks much the same now as it did back in 2012. Hard to believe that it has been 12 years.
Finally...
I am now hitting the 12 year anniversary of starting radiotherapy with Dr Shaffer. Having that radiotherapy was one of the best decisions of my life and something I am so grateful for every time I step out the door for a walk or a run. Honestly I am concerned by the growth I have seen over the last 6 months but also optimistic as the lack of pain I am suffering.
In the future I am hoping to keep on running, getting quicker and pushing through what I ever imagined possible 12 years ago. Hopefully it provides some inspiration and hope to other patients and I continue to keep an eye on research in the hopes that better treatments come along. If I get the time I will try and do a review of some of the literature but accessing and understanding it is much harder now that I am not longer in science.
Happy feet everyone and please get in touch if you have any questions.
I haven't posted yet in 2023 and wanted to remedy that. It has been a very busy year, mostly with running! I have discussed my running before but this year it has gone to another level. A Ledderhose patient that had to use a walking stick and weighed at least 19 stone at one point (probably more) is now one of the better runners in his area. I will try and make sure I post about my running elsewhere.
I am sure this won't mean much to people on here but I have broken my records for 10k, 5k and the half marathon with a sub 38, sub 18 and 1:25 (on a tough course) during this year. I have come 1st!!! at parkrun 4 times this year and when racing it (it is a run not a race but that doesn't stop us) have not been outside the top 10.
My proudest achievement this year is running 2500 miles, a few years ago I attempted to run 2191 miles to raise money and awareness of the British Dupuytren's Society but I failed due to injury. This year I have surpassed 2700 miles and just had an amazing year. I won't rave about my running any more, I will post about that elsewhere but needless to say that if you are currently in pain with Ledderhose there can be a light at the end of the tunnel and people similar to yourselves have found a way out.
So an update on me and where I am at. On 10th September I ran my 212th parkrun, yey go me, but this one was different to all those that came before as I somehow came 1st. parkrun is a run not a race but there is still something awesome about coming in 1st and something that has never happened to me before. Honestly, I got lucky, out of the 496 Eastbourne parkruns that have taken place only 10-15 have had slower “winning” times.
On reflection do I really care? It was the slower summer route and hot, and I had run 55 miles this week so was on tired legs. I did get a PB on the route and you can only beat who is there. Still I am chuffed and just have to remind myself that 10 years ago I was using a walking stick because of Ledderhose disease and 8 years ago I was basically twice the size I am now.
So there you go, a former 20 stone, Ledderhose patient that was fasted with no carb managed to be the first finisher at a parkrun. Wonder what the longest number of runs it is to take someone to get the 1st place token, or who else with Ledderhose has ever managed it?
In case anyone is interested in what happened:
It was basically a solo time trial. I started at the front with several others that are normally around my time and got to the first corner, 100m or so in, I am normally at least 10th by this point but was in the lead and there was one guy close behind. The guy behind commented that at least someone knew where they were going so guessing it was the tourist who ended up 3rd. I held back through the first k and according to my watch I wasn’t even on for sub-20, often the case on this route as the start is grassy with lots of turns. Around 2km we reached the dip into an underpass, and I decided to pick up my pace and see if I dropped those behind me, up to now I could still hear them close.
It worked and I dropped him/ them and from that point was just running scared that someone would catch me, was quite surreal being at the front, only ever happened once before in 2016, only for about 500m and I finished 3rd. With around 800m to go you loop back past the start / finish line and I shrugged to the volunteers as if to say, “how is this happening?” the response was “Go on Gary you Legend”. I kept my lead and took a sneaky look back when I reached the last corner (same as the first one) and knew I had a big enough advantage that it was in the bad, I tried by hardest to sprint to the end and got finish token 0001. Was nice as all the volunteers and other faster runners know my background and were all so thrilled for me.
Not going to lie, I really enjoyed it and was a little emotional when thinking back to everything I have been through.
Hmm, well it seems that it has been 7 years since I finished radiotherapy on my left Ledderhose foot. Those that have read the blog will know that it has been quite a transformation since then and as a result I haven't had much to post about. However I am still getting quite a few enquiries and wanted to let these people know that I am still monitoring the blog and the associated e-mail account.
In 2019, after a knee injury in 2018, I am back to running and am even in some "barefoot" shoes as I find they help my knee. My foot is still fine and I even came 3rd in a race earlier in the year. Sure it was a low-key race but still not a bad thing.
As always if you have any questions get in touch, if you want to contribute with an interview as a doctor or a patient... get in touch or if you are aware of some research that I might like to see (and try and remember my science degree!!!) then get in touch :-)
To be honest I don't really have much to say and this was really because I had feedback that a post would be appreciated by some of the readers :-) Here is a picture of me running
For ages I have been wanting to get back into helping Ledderhose patients a bit more. This year I am doing my 2191 mile challenge and boy is that a challenge! You can track progress on the 2191 challenge on either the following blog or facebook page.
We could do with some more followers on the facebook page, even if it is just to share our messages to try and raise awareness. Hopefully running the the vests in helping to raise awareness as well.
I was looking back through some of my past posts and noticed that I have previously made some (not that great?) videos and posted them to YouTube. If you want to watch any of them, and although the sound quality may not be the best I think there is some useful content, you can see them on the following page (at least this works signed in as me!).
Maybe I could make some more videos, things with 2191 are not going amazing I am a bit behind and a few niggles are stopping me from being about to make up the ground that I need to. Luckily Katie is doing an amazing job and hopefully we can reach our combined target of 3191 miles.
This last weekend I have had the pleasure of going to DisneyLand Paris in part to run the inaugural DisneyLand Half Marathon and in part to see the sheer joy on my 3 year old daughters face as we meet the characters go on the rides. Given my role with the British Dupuytren's Society and my history with Ledderhose I couldn't help but think of things from a Dupuytren's and Ledderhose point of view.
Dupuytren's:
The trip over from the UK to Disneyland was very smooth and the only thing from a patients point of view that I would comment on is the ease of dealing with 2 suitcases if I had Dupuytren's. Admittedly most patients do not have a 3 year old daughter so it would only be one suitcase for me and one for my wife however I think the point it still valid that carrying or pulling a suitcase if you have Dupuytren's in both hands would not be fun. Other than the usual daily problems with Dupuytren's I don't think that there would be any additional problems, none of the rides require you to hold on to things (other than a Buzz Light Year shooting game) but the rest are Dupuytren's friendly.
Ledderhose:
Now Ledderhose could be a bit more tricky. As we were hiring a buggy I noticed that they also do wheelchair hire but this is not cheap and would not be feasible for longer stays but I imagine you would be able to take your own if you had one. If you didn't want to use this facility there are then lots and lots of queues and standing in line my foot did hurt a little bit but not much. You would be ok if you could get a Disney disabled badge which basically allows you to skip all the queues but I do not know what the requirements would be for getting one of these.
The other complaint I would have would be that the trip back on the Eurostar from Disney to the UK was poorly organised and at one point we were, for lack of a better word, penned in to a fairly small area with no seats, as a Ledderhose patients that would have been a nightmare.
I do or at least I did have a folding chair which would have helped in both situations although I don't think they would have liked me to have taken it on to the rides but most allowed backpacks so it could have worked.
The weekend itself:
The weekend itself was amazing and we all had a great time. My daughter loved the Disney Castle, the characters, the rides the shows and her little kids race.
My wife and I also took part in the Half marathon which was great, the first 5k was around the 2 parks and there were loads of staff and characters cheering us on. The course was more hilly than I was expecting and I am not quite in the shape for a PB so was amazing to actually be on for a PB until 9 miles in at which I knew I could either give everything and scrape a PB or keep something in the tank for the remainder of the weekend, I took the latter option as I have another half marathon in November, hopefully the conditions will be good and I can get a PB then but I imagine it will be a while before I get the chance to go to DisneyLand again. My watch time was somewhere just under 1 hour 38 minutes and out of the 11,000 runners I think I will be in the top 500 if not higher which is pretty crazy (still waiting for the official results).
Overall we had an amazing time but I really am not sure what I would have done (other than not run the Half Marathon) had I still been in a bad position with my foot. We probably wouldn't have gone. On the plus side keeping my feet warm has always helped with any pain that I have had and I managed to get some lovely warm slippers which I thoroughly recommend for any patients that find that warmer feet help.
Update: Turns out that the official numbers were more like 9000 runners and I came 284th, very happy with that!
I probably do this every year (so I will not go into real detail), the 21st May will be 4 years since I started radiotherapy for Ledderhose. My treatment was at the Royal Surrey County Hospital with Dr Shaffer, more details can be found here:
Looking back now it was quite a journey, thing were tough at the time. I knew that I was going to have to give up my PhD, something I had worked hard for, about 7 years including my undergraduate I was newly married and felt I was letting my wife down as she was going to have to work extra hour to make up the slack. My foot was giving me so much pain that I was using a walking stick, I couldn't go anywhere without thinking of where we would park or how much time we would have to spend on our feet.
The start of radiotherapy was a turning point for me. Sure it was not instant and in fact it angered the condition to start with but when the improvements started they were dramatic. In the 6 months after I finished radiotherapy I went from using the walking stick and constant pain to being able to walk and run more or less pain free. Last year I started running properly and turns out I am not too bad at it.
Today I am also announcing the start of my 2191 challenge, something I am embarking on with my wife to raise money for the British Dupuytren's Society. It is still a work in progress but more information can be found here:
Please help, even if you cannot donate you can help raise awareness of the conditions by tweeting or sharing the page on Facebook. I would love to get some media awareness to bring a larger audience to the condition. After all we have gone from a lump in the foot and walking stick to running a marathon and thousands of miles.
Today I am going to continue to look back 4 years ago. I am actually finding it really interesting to see what I was doing 4 years ago and how that compares to where I am now and it is also good to remind me of why I started the blog and why I keep it going.
The first post is one where I looked at things that were helping me with the pain back then.
It is interesting how I mentioned in that post about people going out and doing runs and ironically now I am probably a much better runner than all but one of them (but he was really good). but when I am looking at the things that helped I still find that keeping my feet warm is preferable to letting them get cold. I still wear thermal socks and have only just stopped using the orthotics. I still recommend that most patients will benefit from keeping their feet warmer and if you can get orthotics they are worth a try.
I also mentioned in that post how I had just started using a walking stick, thankfully I only resorted to that for a year but mentally using a walking stick as a 25 year old was very tough but made all the easier by "Wonderful Wife and supportive family: There is nothing like having people that will put up with you moaning about it and give helpful suggestions and great advice. Thanks everyone "
Another post I did around then was actually on how bad the pain was at times.
A lot of people are concerned about running and especially about any trauma or micro-trauma that might be caused to the sole of the foot in this process as it going to take a pounding. Running was the first thing that I gave up when my foot started hurting and to be fair I was not much of a runner and I didn’t really try and keep going.
I am mentioning this now because I am at last making the most of my foot feeling so much better and the amazing weight loss and decrease in post run foot aches I have experienced since starting a low carb lifestyle. Last week I ran a lot of miles (for me) as I completed over 20 in a week for the first time in my life and my long run was a very nice and intentionally slow 7 miles (the first 2 with the buggy holding a 2 year old) and it took me just under 1 hour 20 minutes. Clearly I can go faster but I am using the 80% slow 20% fast training principle and so took it really easy and it felt great. I even went for a gentle 2 miles on the Sunday before going to badminton. In fact last week I had 6 hours of badminton (not all playing as I run the sessions) and then did 5 runs!
I am running so much because I have signed up for the Brighton Half Marathon next year, this is a huge deal for me (something which I am sure any Ledderhose patient will agree with) and not sure what charity I am running for yet. I want to run a full marathon at some point and will run this for the British Dupuytren’s Society so don’t want to run for that twice. This time we may well run for a charity linked to mental health as that is something that we have had a close experience with and know many others that have had / are having similar experiences.
As with all things as I don’t like to go things without knowing I could do my best, just look at this blog for example.
I have a 10km in October which I will be running in memory of my Nan, I know I will be emotional at the end of that but this half marathon, despite the choice of charity, I am 100% running for me and think that I will likely be just as emotional at the end of that. Even when I started radiotherapy running is something that I never dreamt I would get back and I really hope it is here to stay. One of my lifelong ambitions has been to run a marathon. I can’t remember when that became the case but I remember seeing Paula Radcliffe set the still standing world record for the women’s marathon and Haile Gebrselassiedoing amazing things in the men’s race. I know for a long time it has been something I have wanted to do and have the drive to do and I really hope my foot holds up.
Over the next 9 months I will of course keep you all up to date with my progress, not necessarily running but more how my foot is coping with the running. So far so good. Wish me luck and know that everyone who reads this blog, whether to follow me as a friend, as a patient or finds the blog for information is going to be helping me through this and dragging me through the tough days.
Hopefully I can prove that it is possible for me to run a half marathon even after being completely incapacitated by this condition and hopefully in a few years I can show that even a normal person with no previous training (by that I mean before having the condition) can run a marathon.
Today I came across a story, the story was not primarily about Ledderhose but about a brother becoming a marathon runner after his brother died of one whilst running one himself. However the article mentions that the person in question had to have an operation for a fibroma on his plantar fascia. This keen runner still then goes on to run a marathon and then runs it in 2 hours and 20 minutes which is an amazing time for anyone let along someone who has had a plantar fibroma operated on.
Now whilst I am not planning on running a marathon, at least not any time soon, I am hoping to beat both my 5 and 10k personal bests this year and work towards training for a 10 mile race next year. I know that my body is coping well with running and it is helping my weight to come down.
It would be great to hear from anyone else that has had any treatment (or none) and gone on to do running. I think from my experience the best advice I could give is to make sure you get proper running trainers and make sure they are the right type for you. I need the ones with the extra support on the outside from where I had been putting all my weight on the outside of my foot.
On the face of things the blog has died down a bit, I rarely post more than once or twice a month and as a result page views are starting to tail off a little bit, not that I care as it seems the important people are still getting onto this blog and are still contacting me for information.
In the last few months the number of people that have contacted me on facebook or through commenting on the blog has increased and the number of people that are in regular e-mail contact with me has increased. There are now several people through the blog with whom I am in regular contact and have been for a year, kind of like plantar fibroma pen pals. In some cases meeting up seems unlikely but in other cases it looks like it is going to happen.
One of these people lives near me, we are hoping to arrange to meet up next week, we have already spoken on the phone and he is already seeing Dr Shaffer because of the information he has read on the blog and the internet as a whole.
Another patient I am speaking to is coming over to the UK next month to see Dr Shaffer (they are from the US) and in the process they have decided to spend the night in the Brighton area before returning on their travels so that they can meet Katie, Amelia and I for dinner. It was so nice to hear that she wanted to meet us and made special arrangements so that it could happen, this is someone that I am hoping to interview and whilst I don't want the meeting to be all about our feet (how odd would that sound to a casual observer) but I can at least hand over a list of questions in person. She has done a lot of research and seen many specialists so it will be great to meet her.
Another lady in the UK is hoping to meet us at some point but it is just finding the time, we live just too far away to make it a day trip and just need us both to be in the right place at the right time so that we can meet up, again this is someone I have been in contact with for quite some time.
In the last week or so there has been one person in particular who contacted me who I have tried to help a lot, this disease can really isolate you as you feel stuck, you can't move around too much as you don't want to aggravate it and if you are living alone without family close by it will be hard to get anyone to listen. She has decided to start up a blog, once she gets going I will post a link on here so we can see another patients experience and what she finds out. The network of people that I am starting to know now means I have been able to put her in contact with a patient that lives fairly close by and has done a lot of research so they can compare notes and know there are others out there.
So although the surface of the blog itself may not be teeming with life just under the surface of the water there is a lot of activity which is more important than what you can see from above.
It has almost been a year since I started this blog, in fact my first post was made on 14 November so it is under a month until my first birthday. The success of the blog has far exceeded my expectation but perhaps that is something I will talk about in the 1 year post that I'll try to remember to do. But for today I want to look back at a post that I made in my second week of blogging. The post was entitled 5 things I miss and can be found here - 5 things I miss.
I was thinking about this list the other day because I really can't think of anything that I particularly miss from back before this all started and was not sure if that was because it has been going on so long that I had forgotten or because I do not miss these things because they are no longer important or because I can do them again now so here is the list:
"1) Going for walks with the Mrs (along the beach)
2) Going for a run (on the treadmill)
3) Playing Badminton (I used to play for my local team)
4) Not having to worry in advance whether I am going to have to walk too much. For example I am going to a wedding in December at which I have been told there will be lots of singing but I am not going to be able to stand for that length of time.
5) Not feeling bad about myself, I loved, well I liked to do the work around the house for the Mrs, I still try my best but she is very caring and won't let me do too much now without telling me off, that's right a Mrs who moans at you when you do housework."
The list was compiled whilst I was on quite a low so hence such a bad tone to it and that is the thing that strikes me straight away, how much I was letting it get to me, some of this was understanding and some of it was just not knowing what to do but still onto looking at the list:
1) I can now go for walks and with the stick these can be for quite a long time, to be honest I didn't miss them that much anyway as I still got to spend good quality time with my wife playing cards and watching TV etc.
2) I still can't run and this is something that I do still miss but not that much, I can at least now walk on a treadmill and I can cycling probably for longer than I could when all of this started.
3) Playing badminton is something that I miss greatly but hope to get back into it soon and hopefully I can take some coaching courses and will be able to make up for my lack of being able to play to my best my teaching loads of people how to play, at least that is the hope. Who knows if all goes well I should be able to make a little pocket money, teach the kid(s) and I have a blog and perhaps a website planned to work on this over the next couple of years. I am thinking of calling a badminton blog, Yoda Badminton as when thinking of me returning to the court I thought of me walking up with my stick and then jumping onto the court and beat all my friends (sorry guys but it is true) and this reminded me of Yoda in Star Wars hobbling along with his stick and then jumping around to fight the dark side.
4) Basically the same as number 1, although I still don't want to walk too far I can walk if I need to with the stick and get quite far.
5) How things have changed, with my wife suffering from severe morning sickness I am doing almost everything (though I doubt to the stand of my wife)... anyone fancy doing some hoovering or ironing some shirts then please let me know.
So it is far to say that I am in a much better place physically and also mentally and hopefully when my one year blogversary comes round I can think that actually it may have been a painful year but it was certainly productive and I haven't really lost that much at all, I mean look at what I have gained I am now married with a baby on the way, I couldn't be happier and I think that says it all.
Plantar Fibroma and my experience: (posted 14/11/2011, Updated 26/07/2012, April 2013, October 2013, August 2015:)
This is a relatively unknown disease that can be painful and debilitating; here I am going to tell you my story and as yet unsuccessful attempts to alleviate the problem.
In the Beginning:
Growing up I was sureI had a little bump in the arch of my foot but there was no pain, no growth and nothing to be concerned about, then two years ago out of nowhere like the little menace that it is it started to grow and started to become really painful. I headed off to the doctors as it was starting to interrupt with my daily life and this was not good enough. My GP has a look at the lump and annoyingly decided that it needed to be prodded which of course just made it more painful. He had a look in a book to confirm his suspicions and then informed me of what I already expected that it was probably a plantar fibroma.
A plantar fibroma is a benign tumour that forms in the arch of your foot. I think a good way of thinking of it is basically that you have a marble stuck in the middle of the arch of your foot and it is like stepping on that all day.
Seeing the GP:
Being a research scientist I was intrigued to see what I could find out about this nasty little thing, so I did some online searches using both just Google but also Pubmed to look for research articles on the condition. Now this was a few years ago so I can't remember all of the details but basically I found that Physiotherapy can't help, surgery can't help as it just grows back most of the time, steroid injections might help but might make it worse and that there are several other types of treatment but that are not available in the UK (well at least not on the NHS).
So after my research I was quite surprised when the doctor referred me for Physio.... I waited for an appointment and then I waited some more, I was in so much pain that I decided, as my parents said they'd pay, to go to a private physiotherapist. I went along and explained what I had, she was very experienced and very helpful, but said that in all of her years she had only come across one other case and that there is no known way for physiotherapy to help the condition. Being a student (which means little money) I needed to see the NHS physio before being put through to the foot specialist, luckily I got one pretty quickly after the above private appointment as I said I was happy to see a student physio, they told me the same thing as the private one and sent me on my way. I did learn from the private physio that it would be best to invest in a good pair of running trainers and wear them all the time and this did help decrease the pain to some degree.
I was getting pretty stressed at this point, my foot was killing me, there wasn't and if I am honest still isn't really a step in the day where I don't feel it, and many times I can just be lying in bed and it will twinge and I'll be in a lot of pain for 30 seconds or so....
The specialist appointment 1:
Anyway I was finally going to see the foot specialist to get answers. I went along and they said pretty much what I already knew, if I was to have surgery (let's face it if you hear tumour you do think surgery) the chances of it growing back are very very high and in all likelihood it is going to come back faster and harder and meaner and it really is a last resort, they were nice however and said that maybe at this point the best option would be to try an ultrasound guided steroid injection into the fibroma.
The steroid injection:
A few months later... with little progress in any way I was lying on a bed waiting for the injection, I had been told that I would require local anaesthetic otherwise the injection would be incredibly painful, well the local was really really painful but the steroid injection just felt like some liquid surrounding the lump. I was told to avoid sport for a few weeks but otherwise I should be ok, well I stupidly decided to head off to the lab, not realising that I was only pain free because of the local, a few hours later that wore off and I was in a lot of pain and couldn't walk and had to be picked up and taken home.
Around the same time as this I started to do a lot of cycling, with my weight being a potential issue and pretty much any other form of exercise out of the question due to the foot pain and it was working, I began to lose weight. Now whether it was the weight loss or whether it was the steroid injection that helped I don't know but over the coming months the pain began to subside, I was able to play badminton again but still in the knowledge that the lump was there, it was just more in the background.
The pain now is at a point where I can't give a 20 minute presentation without requiring a seat, not only that but the condition has progressed to the point where if I have had a busy day on my feet I cannot bend the toes on my left foot up as the tendon in the bottom of my foot where the lump is located becomes too tight.
The problem with this thing is that I now don't walk properly, my foot is twisted so that I walk on the outside of my foot to stop weight from going through the lump, whilst this is a good thing it causes other pains as this is not how we are meant to walk. I think as a result of this and increased weight bearing on the other leg I now have Achilles tendonopathy (or tendonitis depending on who you see) which means I now have problems in both legs, luckily the Physio can help with the ankle and it seems to be working (but that's another story).
Along the course of this journey I have learnt a lot of things and really wanted to share my experience in case there is someone else out there with this who thinks they are the only one or who might have some helpful advice.
The science stuff:
I thought I would put a little bit about the science at the end, mainly because this is my area of expertise, as previously mentioned I work in a research lab on cancer research and therefore have access to a lot more resources and articles than most people with this nasty condition. This is just my experience and my opinion and I am not a medical doctor so it's just my opinion.
What is a plantar Fibroma?
A plantar fibroma is a thickening of the plantar fascia that results in nodules in the arch of the foot, these are normally high in collagen and it is thought that over-expression of collagen causes a build-up and that this is the main content of the lump.
How do Plantar Fibroma's occur?
It is not really known how they occur but it is thought that they can be hereditary but another theory is that it is a response of the body to damage, in order to recover from some damage or trauma it tries to repair but over repairs and just keeps on repairing until too much tissue is present and this forms the lump. However in very rare cases the lump can be caused by cancer so it is worth getting it checked out.
Why do they grow back?
As far as I was aware it was not until earlier this year as to why these things are so pesky and grow back after surgical removal. Wang et al , see here , showed that tissue from fibromas have stems cells present, this means that they are able to proliferate and make more tissue and they also showed that stems cells are not present in normal healthy tissue where fibromas are not present. They also showed a drug that can be used to stop progression of the disease, this hopefully suggests that their research might led to development of a cure or at least some kind of treatment to help anyone unfortunate enough to have it. The morphology of these lumps is also very similar to scar tissue so surgery gives more scar tissue and therefore more foundations for the lumps to start.
Are there any related conditions?
I thought I would also like to include a bit of information saying that there are a couple of other disease linked to this, one is present in the wrist and results in basically the same condition but of course with much less pain due to most people not bearing weight on their hands but all your weight does go through your feet and this is the main cause of the pain.
Summary:
Plantar Fibromatosis is a sometimes painful condition that causes growth of lump(s) in your feet, as these develop they can be incredibly painful and cause stiffening of the toes. There is research going on in this area and hopefully some sort of help will come soon. There is no cure and very little awareness.
Don't forget that you can all help by donating your stories with these
conditions or money to the BDS, by clicking the +1 Google button near
the top on the right hand side, going to the Facebook page and hitting
like, following on Twitter or leaving a comment here / e-mailing me, all
are appreciated.
The picture was taken in May 2012.
The updates:
Second update:
Right so onto the new stuff. So not that long after I made the above I made the trip back to the specialist and whilst the appointment was not that great as the guy was very unhelpful and was even suggesting that I may have something different I was then sent for both an MRI to confirm the diagnosis and also for orthotics to see if they could help my condition.
So firstly onto the orthotics. The appointment for this was really good and the guy seemed to know what he was talking about and I had all the prep done and they were sent off to be made. I was quite optimistic about these for several reasons. The signs were good as the best trainers for me were the ones with most support which prior to getting the Orthotics were running trainers. The running trainers are great but they are not warm in the winter, not dry in the winter and are very expensive when you are wearing them all day every day. The orthotics arrived and I instantly took to them, I was ill with the flu at the time so managed to wear them in gradually although still quicker than recommended. At first these seemed to help but also coincided with me spending less time and with my wedding and honeymoon which of course was the most wonderful and relaxing 2 weeks of my life.
In the few weeks since I have been back from the honeymoon the foot pain has intensified and I am starting to reach the edge of my limit and I either have to choose to have an unproductive day and risk not finishing my PhD or have a productive day and be in pain that I am not going to be able to cope with for the remainder and this is kind of the dilemma I find myself in at the moment.
Right though back to the MRI. Not much to say about the MRI. The actual process was very simple and easy, I went along and stuck my foot in a machine and then waited a couple of weeks for an appointment to discuss it with the foot specialist. This appointment was much more successful that the first but was with the boss rather than one of the not so clever people. The man had lots of interesting points but was told that until I basically cannot walk that surgery is not an option but it remains my only option. But the MRI did confirm that it was Ledderhose disease so at least we knew what we were tackling.
In the past 6 months or so since I made this post lots has happened and not just me getting married and my foot getting worse. I am also much more open about my foot with lots of people and I am getting lots more support from my wife, my family, my in-laws and my friends (you all know who you are). This has led to me seeking new ideas and new hope as to where I should go next.
For starts I now have a foot spa and heated slippers which help ease the pain for a short time but that is better than nothing. I have a stall for the kitchen which helps me keep up with the house work and a walking stick for when it gets really bad. All these things help but do not take away the immense pain that I feel in my foot. This pain sometimes comes first thing and is normally present by midday and always there by 3pm and is really excruciating at the moment.
I no longer feel that I am a one lump person. I am getting a lot of pain down near my toes on my left foot and I am worried that there maybe a lump at the base of my second toe as this area in particular is very tender to the touch. I also think I am developing the same problem in my right foot, I have started to get the occasional pain that I got when it all started in my right foot and am worried that it is now bilateral.
This has led to me looking into lots of different treatment options and there are others out there that are not on the NHS. I am currently looking in radiotherapy as my next choice as I have interviewed several patients that have had success with this option and also have been looking at Xiapex which appears to be coming to the UK (in Devon for Dupuytren's at least).
So I guess at the moment I am in a job that makes my foot very painful as there is lots of standing and I am in a place where my next treatment is either going to have to be costly due to the NHS not providing it or surgery which I have been told to avoid by so many people I hardly consider it an option. So time for another update:
Right last time I left things where I was in a job where I was in constant and increasing pain and I was deciding whether to get radiotherapy. As anyone who visits here often will know I have now gone with radiotherapy and I have completed my treatment and have been keeping everyone posted as to whether things gets better or not.
But since last time I updated this "story", a post that I only put up on 27th March, so say 3 months ago, things had gotten much worse. I was practically unable to walk at times and as such I had to take the sad but necessary step of leaving my PhD because the pain caused by the increased standing and walking was just too much to keep going. Luckily through fund raising and generous families we got enough money together for me to get radiotherapy.
Me getting radiotherapy
I went for radiotherapy as it is painless, has a good chance of working and doesn't require any down time other than the week you need to have it done. I went with Dr Shaffer and the UK for several reasons. One was cost, to get radiotherapy done in Germany would have been much cheaper had I needed several hands and feet done but I only needed the one and therefore with the cost of travelling it worked out cheaper to get it done in the UK and this cost was about £2000. The choice of Dr was quite easy for me, I only found two in the local area and Dr Shaffer agreed to give a free consultation very quickly and with no fuss I was on my way to see him. The appointment with him was very good, we went through my symptoms and any risk factors that I might have and it was agreed that I was in a good position to have radiotherapy although of course with the risk of cancer it is always better to be having this radiotherapy done later in life rather than earlier. I was then very quickly given the radiotherapy appointment which I attended and everything went really well. In the middle of this time Dr Shaffer agreed to do an interview for this blog on radiotherapy for treating Dupuytren's and Ledderhose which has lots of detail and is very interesting to read. On the final week before my second week of radiotherapy I started to see some improvement beyond the tanning I had seen before as I started to see almost no pain at rest and a decrease in the size of the lump and this was confirmed in my second consultation with Dr Shaffer. This second week went really well and I have continued to notice more improvements with me now having much less pain when walking and it just remains for the pain when standing to disappear and I will consider the radiotherapy very much a success as long as it doesn't come back for some time to come or ideally never. So at the moment I am in a good place in terms of my treatment and progress and I am getting lots of nice e-mails and comments on how useful and appreciated this blog is. Though hopefully this will be the end of my Ledderhose story I am going to continue to question professionals, patients and scientists for answers and see where it can it can us.
Update - April 2013:
My foot has continued to improve massively, I have not used the stick this year and I am regularly playing badminton and have started the podcasts I found on the NHS website to get me running 5k. I hope that others find treatment that is as successful as radiotherapy has thus far been for me.
Update October 2013:
I thought that it was about time I updated this post again. The main difference from last time is an improved confidence. The walking stick has not even been thought about this year and I am now running properly, in fact I have already run many 5km runs and I am doing my second 10km run next month. My foot is hardly hurting, even after the runs, in fact the impact of the condition on my life continues to decrease and hopefully this will not change. Radiotherapy is not the only option but it is the option that has worked for me. I am continuing to up date the blog with information and trying to find out as many ways as I can to help patients and spread the word.
Thank you to every who has raised funds, run a few miles (or walked), who has commented on here, has helped in real life and especially to the one person who has had to put up with all of this the most, my wife.
Update August 2015:
I have not updated my main post in nearly 2 years, now it
has hit the 100 comments mark I feel that it is probably a worthwhile thing to
do. A lot has happened in those 2 years even if the state of my foot has not
changed greatly.
Firstly I started a low carb diet in late 2014 and have
noticed that the residual pain I had in my foot has more or less gone,
accompanied with this life-style I have experienced a massive (7 stone)
decrease in weight and this has obviously taken a massive amount of strain off
of the foot. Whether it was the weight of the low-carb that has helped I am not
sure but to be honest I do think that the decrease in the remaining twinges and
aches began before I had lost a significant amount of weight. The distance I
have come can be seen in the fact I can run 10 miles + with my daughter in a
buggy and have no problems and even play badminton the next day.
In terms of this blog the number of posts has diminished but
the number of interactions through Facebook and e-mail has increased. I think
the core data is now available and so it is mostly a case of updating it,
improving it and interacting with patients. In search of more information we
have conducted a patient survey which I went to present the results of at the
International Dupuytren’s Symposium in May. This was a fantastic experience and
hopefully many doctors will have taken on the information I provided and I know
for a fact that I learnt a lot. The doctors do care about the patient welfare
and not just where there next lot of funding it going to come from but it is a
lack of information and understanding of all the options that can hold them
back. After all they may feel that surgery is an ok option so why consider
radiotherapy.
I have also managed to raise the profile of the condition by
appearing in several local newspapers and on the local BBC news channel. I have
to say that I was surprised by the success of appearing on local TV. The story
only appeared once but I have contacting by a lot of patients who had seen it
and wanted to know more not only about my story but also about the treatment I
received. I am very grateful that the BBC put it on but also for everyone who
comes to the blog and thanks me, they give me the confidence to put myself out
there as I know that the blog has helped so many people.
For me the biggest change is in the running. I was running
in 2013 but this basically stopped for a year, I guess because it felt like a
lot of work and a risk. Now though I do not feel it is a risk and I am really
enjoying my running, in fact according to my WAVA ranking (% time compared to
world record) I would now actually be considered as “local class” as supposed to
unclassified. Most of my running is gentle but in 2013 I was running 2-3 times
a week and not great distances, I am now running between 3-5 times a week
depending on my schedule and run up to 30 miles a week at the moment. I am in
training for my first ½ marathon and fully intend to tackle a full marathon in
the future. I am also considering starting a blog along the lines of plantar
fibroma running in order to log my running achievements. I am enjoying my
running and really want to share this but this blog is not the right place for
that.
Anyway I am always looking to build bridges and extend the
blog in any way I can, if you have any information you would like to see on the
blog or think that there is a chance to work together then let me know. Just
remember that like a lot of people that do great things for these conditions (thinking
IDS, BDS etc) we do this in our spare time for no profit. You can donate money
if you are so inclined (just get in touch or visit BDS/IDS) but ideas, plans or
even pointing out a typo are all great ways you can help. Becoming a member of
the BDS or using Give as you Live are fairly simply and helpful things you can
do as well.
Thank you for visiting the blog and for reading, if you want
more information then please ask either by leaving a comment or sending me an
e-mail.
Below is a video of the presentation I gave at the International Dupytren's Symposium in 2015.
.png)
