Collagenase for Ledderhose?

I have previously covered the topic of Collagenase injections by looking at various aspects of it including its use in cells, interviewing a Doctor that uses it for Dupuytren's and covering the material presented at the Dupuytren's symposium. Because it has not been approved for Ledderhose I don't have a specific page in detail on the treatments page. 

There are a couple of different enzymes that have been trialled to break down these lumps and it looks like Endo are hoping that their product can be an option for Ledderhose. 

Endo Presents New Investigational Collagenase Clostridium Histolyticum Data at the American Podiatric Medical Association Annual Scientific Meeting

So what does the article actually say? 

That there have been some encouraging clinical trials done on using CCH in the treatment of Ledderhose disease. Basically so far their studies are indicating that the injections are well tolerated by the majority of patients and that most are seeing an improvement in the condition. Overall it sounds promising but obviously they are still looking into it and I know there have been mixed experiences with using it to treat Dupuytren's. 

Would be good to have another treatment for Ledderhose, of course assuming that is a successful and viable soltiion. 

Limits and sore feet

I have posted previously about how I am exercising and trying to walk a bit now along with trying use the exercise bike to lose weight and I am losing weight. One of the people that I am in touch with was worried that I would push too hard and increase the chances of it coming back and I am of course not wanting to do this. 

I think though that my feet are good at telling me when I am reaching my limits and therefore I take a break, sit or stop when I can . I have only had one time when it has really gotten to me. I was going to the cricket at the same time as PRIDE was on in Brighton and this meant that the buses were not running right through where I need  to go so I had to walk, against the crowd to get where I wanted to go. My wife had to park a long way from the ground and we had to go up and top up the parking meter and ended up making that trip several times and I was in a lot of pain to the point that when we left my wife went and go the car and then I drove us home. 

Left - Radiated foot

Right - non radiated foot

I am happy to say though that by the next day I was fine which is in huge contract to how I was before the radiotherapy. This happening did remind me how little time ago I was in so much pain from walking and not to push things too much and I am sticking mainly to the exercise bike as this seems to cause no problems for my foot. 

On the other side of things my foot has been quite dry and I have been getting as my wife puts it dry bubbles, they kind of look like blisters but they don't really hurt, I am back  to having to apply E45 and actually remembering to have to do it as my foot is that dry again. This bubble is visible in the picture of my left foot, it is near the bottom of the irradiated ring. This has kind of opened up now but the base of my foot is still very dry and I am still using E45. Hopefully I can continue to exercise and lose weight and this will help 

Best of luck to everyone out there who has these conditions, please do post anything constructive that you might have on here or on the forum. 

Radiotherapy for my plantar fibroma starts again next week

The Radiotherapy:

Dr Shaffer

So the time has come for the second week of my radiotherapy to start, well on Monday it does anyway. I was told by Dr Shaffer (who I have since interviewed) last time that I may expect to see some improvement before my next visit and I have certainly seen some changes. 

• Tanned area where radiation was performed. 

• Decrease in pain when at rest which means very few shooting pains when laying in bed etc. 

• I also think that there may be some decreased size in the lump but I am not yet noticing any decrease in pain when I am standing or walking. 

Picture of tanned mark on foot, see the circle on the left. 

Overall I am much less apprehensive about going for the radiotherapy this time. I have after all been there before and I now know my way round and know what to expect. I am not looking forward to the travelling which is going to be complicated by the presence of the Olympic torch in my area on the Tuesday and in Guildford on the Friday. Traffic could be a nightmare but I am hope to get a few pictures of the torch at some point to post on here. 

The plan for next week at the moment involves me staying with some family (thank you) on the Sunday night as I have an early appointment again to kick things off on the Monday and then I am travelling up with my wife or by train on the other days for appointments at 11am. 

The changes:

Foot ready for RT. Circle should line up with tan shown above

Of course a lot has happened in the time between the last week and this week, I have now changed careers and have a fully seated job to look forward to and hopefully this will further help recovery. To be honest I think that the change is going to benefit me in the long run whether my foot gets better or not as the conditions of employment at the new place are much better then when I was doing the PhD. I tried the bus trip to work and it only took 40 minutes which is a nice length of time to read a book but not so long that I will get bored out of my mind. 

I am looking forward to the challenge for starting a new job and getting my teeth stuck into learn a whole new load of skills that will hopefully help me progress in a new career and should lead in the long run to much better job security, better money, better hours and hopefully a better me. 

And it goes on: 

On another note it is a struggle to find too much to post about on here, I think I have probably mentioned this before. I now have so many useful posts and I don't want to detract away from that by posting anything too useless, I would still like to contact a surgeon who does work on Ledderhose in order to interview them like Dr Shaffer above and like I have done for Dr Elliot Sorene and Dr Terry Spilken but all attempts so far have been unsuccessful. I would also like to know if there are any videos that people would like me to do to try and help different aspects of these diseases, whether it is a kind of treatment like radiotherapy or if it is something like the risk factors one I did then just send me an e-mail and I will do my best to make it. 

Noticeable change after Radiotherapy - Just not the desired one yet

Just a short and quick post for now. I will be having a look at the Pfizer it's in your hands thing over the long weekend but for now... 

I just wanted to say that I was looking at my foot thing evening and I noticed that I have a clear ring, almost a tanned area where I had the radiotherapy. It was interesting to see this has not shown up and I am intrigued to see how I improve from here, not that this appearance in any way means that it will work. 

So can you see it? On the left is the radiated side and on the right non-radiated side, I have made this clearer below with some arrows pointing towards to the line where line is. This is very obvious in person but pictures aren't great.

I think that the circle is quite obvious on this picture but for anyone who can't see it, look down (not at the floor but down the page)

Think it is really clear on this one.

Very clear in this one.

A painful birthday

Today things have not been good. My birthday which is great but we decided to go for a lab lunch. The place we decided to go to was about a ten minute walk away and then of course ten minutes back when the place was full. The meal we ended up having was really nice but by 2pm my feet we really killing me. I was struggling to stand for long periods of time and there was a lot of grimacing, I changed to my insoles and things were not much better but I kept them on for a bit to see if they would help. Things were not helped by me being busy in the lab, I needed to use the centrifuge a lot which is annoyingly on the other side of the room so I was up and down like a yo yo getting bits and pieces. 

Most of the pain was coming from the location of the plantar fibroma. One thing that was nice today though was that on the way back from the initial place that we tried to get food someone actually said we should go to the closest place because they were worried about my foot. I guess this kind of concern is something that I need to get used to and something to appreciate and is something that more people with Ledderhose would get if we could raise the awareness of it even just a little bit. I think that there are lots of ways of doing this and we just need to get round to implementing them but the thing is timing and money. Timing not just the right time but also finding the time to do it and then money well who has any of that and is willing to contribute any to a thing like this? (Sure I am repeating myself from previous blogs) 

Anyway back to my feet, the pain did seem to ease a little bit after putting the insoles on, still not to the point that I was happy standing or walking for any length of time but any improvement is better than no improvement. Only a week Monday  now until I get to look at my MRI results. I find it hard to believe that it is going to show anything other than Ledderhose but at the same time I can only imagine that it would be a good thing if it did as it is so hard to do anything about it otherwise. 

I am hoping that these orthotics will make things easier as I increase the amount that I am wearing them and that the MRI results will clear things up either way. 

My Birthday!

What day is today,
Today is my Birthday,
What a great day for a Birthday,
Lets all have some cake
And you smell like one tooooo...
(Thanks Futurama for those kind words)

25 years young today and hoping for a good one. Though my birthday is more going to be celebrated tomorrow and it doesn't seem like such a big deal as you get one every year and in just over 3 weeks I am getting married to my wonderful partner and that is a once in a lifetime thing.

Back on the foot and it does hurt a bit today as does the ankle, no more or less than I would expect which I guess means that I really do need to wear the insoles long term over a long period of time to feel the benefits the next day.


Plantar Fibroma Support Forum
http://plantarfibroma.freeforums.org/

Ledderhose News

I was on facebook earlier today and I get the messages from the British Dupuytren's society. Their most recently linked article is Brighton Music Lover Thrilled with treatment. This is quite local to me so it grabbed my attention. It is about a man from Brighton with Dupuyten's who was given a Xiapex injection and it helped him hugely. Of course it is annoying that he had to pay from his own pocket but it got media coverage. Perhaps this local news outlet is a place to go to try to get a story in about Ledderhose for Rare Disease Day.

Anybody else find any news stories about Plantar Fibroma's or any of the related diseases? As I have not really had any success.

Though I don't seem to be able to access them there are several on Dupuytren's on the Times and I would really like to see the one by Jonathan Agnew as he is someone who I actually have heard of (cricket for those not in the know). I can actually find out much more about Dupuytren's than I can about Ledderhose which I have only found in one article and that was just because it was mentioned as being associated to Dupuytren's.

Today with Plantar Fibroma

Today was my first day back at work after Christmas as having had flu I have been stuck at home and not been on my foot. Does my foot hurt more today than it has for the past month? Yes it does.

I have also been trying out my Orthotics and they are ok, just getting used to them and hoping they are more comfortable. I have got the Mrs to have a look and my feet and ankles don't seem to tip over so much but it still remains to be seen whether that is going to last or whether I am going to be able to wear them all the time as well.

Further to my post yesterday my rankings have flown up and the blog and forum are much higher so many Plantar Fibroma help can be found by a few more people.

http://plantarfibroma.freeforums.org/

Top 10 Blog and forum in Google

A few crazy things:

Right so I noticed that my blog is now linked to on here: http://dupuytrens-society.org.uk/TreatmentL.html

Which is great and crazy at the same time, at least it means that my story should reach a few more people and maybe the forum as a place to talk for a few more people. So I thought I would investigate and see what else I could find and found that Google searches for the following words result in the blog coming up in the rank shown:

I also saw that someone had linked to the blog through a search with Ledderhose and weight as their search and the blog comes up 9th with this.

Ledderhose blog - 7th

Plantar Fibroma Blog - Forum is 6th and blog 9th

How to cope with Ledderhose or how to cope with plantar fibroma - 1st (wow)

Ledderhose & running trainers - 7th

Plantar Fibroma Support - Forum - 7th (disappointingly Ledderhose support does not yield the same result)

Christmas and Ledderhose - 3rd

Cali and Ledderhose - 10th (thank you Cali)

Plantar Fibroma Forum - 2nd & 3rd - interestingly the forum does not come up but the blog does in 8th place.

Plantar Fibroma Video - 4th place - another one that has actually been used to find the blog.

Another very likely search to be done is Plantar Fibroma Sportsman where the blog comes 2nd and 3rd.

Plantar Fibromatosis physio -2nd  Interestingly this brings up the review I wrote on Dooyoo which is the same as one of my first posts on here. http://ledderhose.blogspot.com/2011/11/plantar-fibroma-real-pain-in-foot.html. This also comes 3rd if you search for plantar fibroma uk specialist

So as you can see there is a huge chance for people that need help with this disease to come across this blog, come across the forum and hopefully be able to find someone else with the disease even if we can't make the pain go away.

http://plantarfibroma.freeforums.org/index.php




On my travels I also came across this

http://www.pfizer.co.uk/sites/uk/media/pressreleases/Pages/200PeformersCreateGiantHumanHandtoShowImpactofDUPUYTREN%E2%80%99SDISEASE.aspx

I know it is for the hand version (for lack of a better phrase) of the disease but it is good to see someone with a bit of backing trying to raise awareness.

Interesting book

Well doing some research this afternoon I came across this new book that is coming out, shame about the price as I imagine it would be a really great source of understanding for anyone with Ledderhose. Of course it is really aimed at doctors but if anyone wants to buy a copy for me then feel free :-P 


Dupuytren's Disease and Related Hyperproliferative Disorders: Principles, Research, and Clinical Perspectives


The book says that "Until a cure exists, Dupuytren’s disease and related disorders such as Ledderhose’s disease will pose lifelong threats of functional impairment for affected individuals."


Anyone who has any of the above will know that is true and this book explores the conditions by looking at the discussions from the 2010 International Symposium on Dupuytren's disease. It includes information on the biology and the pathology of the disease and discussions of techniques including radiotherapy and surgery. 

I'm back

Right I am back after the Christmas break and have been suffering with some nasty virus that has kept me out of action for a while but I want to get back to posting.

First of all I have been and had my MRI, they are looking not just at my bad left foot but also at my dodgy right ankle. The process was as anyone who has had one knows painless and not too bad. I went into a room with a giant noisy machine and they basically wedged my feet so they wouldn't move and then slid me in. Each foot took about 20 minutes and the machine was one loud beast but overall if it hadn't been for my cough I think it would have been very smooth. I have a date later this month to discuss my results with the specialist and see what happens.

I have also been and had my orthotics fitted. See pictures below:

The black ones are the orthotics and the red ones are the old standard insoles. They have Achilles support at the back, arch support that doesn't put pressure on the lump in the middle and a toes bar at the end. They are supposed to stop both pain through the lump, me tilting my foot to the sit which meant that all weight was going through my little toes and also help with my poor old Achilles.

I think due to the Christmas break and being ill I have not been in much pain at all anyway and have just been suffering the odd spike as I have been stuck in bed almost all day every day for 3 weeks. I think that is almost over now, I am at least out of bed for a few hours before I need to crash and my head is certainly much much clearer.

I have also had some people finally join the forum I made, whether this will come to anything I do not know but one person has even made a post about their experience with plantar fibromas.

Looking forwards it is only 4 weeks until my wedding day so I have that long to a break and with these orthotics in to make sure my shoes are nice and comfy on the day.

Stay tuned for my progress with the orthotics that I have to wear in for 30-60 minutes at a time and bring that to a whole day over the course of 3 weeks and for my MRI results to see whether what I have is a plantar fibroma or just something with very similar symptoms.

A good appointment, oh yeah

I haven't really posted in a while and I guess that it because I didn't feel the need to post or just because I couldn't be bothered, not sure but I do want to post now that I have had my Orthotics appointment.

Well it was this morning at 9am, anyone who has seen what happened at the last appointment I had early will know that the guy I was seeing arrived late and saw me later, well this guy was there early and saw me early, that's right an appointment where the doctor / specialist was ready early. Good start!!!!

So I went in and he has a quick glance at the notes and said you are here for Orthotics, well actually he sang some Christmas songs first which was really cheery of him. He basically got straight down to business and started looking at my feet. First I stood up and he looked at me face on, he said "right so you are leaning on to the outside of your foot to try to channel the weight away from the lump, would that be fair to say?" to which I replied yes, he then had a quick look at the lump but unlike the other guy at the previous appointment put very little pressure onto it directly.

He then moved onto another area of my foot feet and looked at the toes and start "do you get pain in the base of your toes?" to which I said yes and he said "I thought as much" he then explained that I had a hardening of the skin near my little toe which shows that you have been putting a lot of weight through this region, and the same patch was also present on the other foot though to a lesser extent. He then moved onto my Achilles, he had one look and said "your right ankle is bad?" and I again said yes, this guy clearly has a lot of experience looking at peoples feet and can tell just from looking at it exactly where hurts and more or less why. He asked it plantar fasciitis had been mentioned and he said he was not surprised to hear that it had been.

I then had a kind of cast made of my feet and was told because of Christmas it will be 4-6weeks until I have to go back for a proper fitting and instructions :-) looking forward to trying these and being able to wear normal trainers and my shoes at the wedding :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-)

An appointment on Thursday

Ok so today I had to do some walking and yeah my foot now hurts. We had out work Christmas meal and it was nice and I enjoyed the day. Interestingly whilst talking to one of my fairly new colleagues he explained that he had to have a lump cut out of his foot, sounds like a slightly different thing as first of all (from what I think he said) it sounds like they tried almost of file it away and then as it came back they removed it and all is now good. From what I have heard about Plantar Fibromas and lumps in the foot in general I find it hard to imagine what else it could be but it just sounds like he had it so easy, well when it came to treatment as he also said he got the the point where he was struggling to walk and was suffering quite badly. Maybe it was the same thing, I will try and get round to asking him before Christmas, if it is then it is nice to hear of a good surgical outcome.... he described the lump as pea sized which would make it quite a lot smaller than the one I have but at the same time sounds like it must have been extremely painful.

Anyway some good news on the appointment front, I heard from the people who are going to make the specialist insoles and I am seeing them on Thursday, very exciting, I am really hoping that this is going to help me with my foot on a general being able to stand and walk on it basis, not a cure and not a miracle but something that will help.

Fingers crossed

Today

I am annoyed today, not at anyone else, but actually at myself. Today my foot is killing me, every step I am in pain and every step hurts, then you have the twinges of pain which really hurt. Why today? Well it probably has something to do with having to jump on a bus and train this morning, this is something that I don't mind doing, especially as I am normally so lucky to get a lift in it. I don't actually think that this was the cause but I think it was a contributing factor, in itself it is not that much walking, only an extra 20 steps or so to get to the bus rather than the car and getting from the bus to the train is not actually that far but it all adds up, especially as coming from the train station to work is a distance I don't like to travel nowadays. Then in the evening I had the pleasure of doing the reverse trip, much worse because now my foot is hurting and the train the running late due to a fallen tree and a baby decides to scream the whole way back. 

Up until last year I would walk to the train station which was a good 30minute walk and then the 10 minute walk from the station to work. I used to do this with ease and it is something that I should be able to do with ease and I hate that now I am reduced to not being able to do that with ease. Today I have not walked a great distance, on top of what I have mentioned there is the usual walk around the lab and the trips up and down the stairs yet I am in a real load of pain. 

Yesterday however everything was really good and I was not in too much pain until the end of the day, at the end of the day it was admittedly bad and so I should have predicted what was going to happen today. Yesterday I was happy with my effort at home, I did quite a lot of washing and cleaning and cooked 2 lots of dinners and managed to make what I consider to be a really nice ginger cake. Fingers crossed that I get something back from one of the things on my waiting list, I mean I am not expecting the blue badge thing to come back straight away but it would be nice as you would think that the only reason that someone would be applying for this badge is because they need it and therefore they would try and make sure that there is not too much of a drag on things. I am also waiting from the orthotics appointment to come through, not sure how long this should take but I was given the distinct impression that the waiting list was not that long and that I should get this sooner rather than later. The MRI I am not expecting to arrive that soon but it would be nice if it came so that I could plan for it, as long as they get it in the right place rather than the one that is over an hour away and it doesn't fall on the day of my wedding / whilst we are on honeymoon I don't mind. The one that I am going to chase up though is one that I am supposed to be having with "foot health", my Physio referred me for this and I have not yet heard from them. Guess the time has come to call them and see what happens, hopefully they have the referral.... 

A day of waiting and hope

I have done it, I have sent off the application form for the blue badge, now just wait and see, at least there can only be a few answers, yes, no or come for an assessment, I am dreading if they ask for an assessment. Mainly because I am wondering if I am having a good day and if it is after I have been good and been sitting down will it come across how much pain I am in. I am not someone that is capable of lying to them about this and pretending that I am having a worse case scenario day, I can easily explain to them what a worst case day is like and how bad it has gotten but they will only have my word to go on.

I do think though that getting this will help me be able to stop the pain from building on my bad days, so fingers crossed I can get the help that I need and fingers crossed even more that I won't need it for long.

It was also made clear to me today that I might be in line for a foot spa type device for Christmas which would be nice, well hopefully it will feel nice and maybe even help my foot feel a little bit better.

I am also eagerly awaiting letters for both the footwear people and for the MRI, kind of excited about the MRI as it will be cool, that's the geek showing, to be able to see my feet is such detail. Today the pain has varied, not surprising after the punishment it got yesterday morning. For anyone that is interested I did a google search for MRI and plantar fibroma to see what I might be able to see and saw this:

from here: http://www.radsource.us/_images/0409_13.jpg

I'll make sure post whatever it is that mine end up looking like and I am looking forward to seeing my foot in such detail (as I said about 2 seconds ago). I am also hoping that getting the inserts for shoes and things sorted might enable me to stand and walk for longer with less pain and that would be a victory, muahahaha. 

Update 1

Right another thing that I remembered was that I explained about the lack of movement in my toes and he just said "why do you think that is?" And I just thought that if he knew what he was talking about he would know what this is a symptom of?

Ahhhh, annoying

Well I was not sure what I was expecting from today, but I was expecting to see someone who knew what they were talking about.

The appointment did not get off to a good start, the consultant was late (we saw him wander in 20 minutes late) and we then waited 15minutes for him to call us, he called us from the other side of the room, even knowing I have a foot problem he then walked off and we had to find him sitting in a little room down the corridor, no real greeting and no apology at all for being late. Not impressed.

He then asked to see the foot and a bit of background information, so I explained about the lump being there for year and starting to hurt 2 years ago etc etc. He didn't really seem that interested in what I was saying and then started looking at the lump. Now I am not sure what he was thinking but he just started pushing into the bottom of my foot, he knows this is painful and still did it, not only did he do it but he was not even looking at me to see if I was in pain, which I was, so he did it again, then seemed to realise so stopped.

I also gave him my letter about my ankle problem from my physio, a few quick twists of the ankle and he didn't seem too bothered, really like I was taking up time he would rather spend elsewhere, well it's his job he should be there. He then says well Surgery is an option but it needs to be a defined mass, knowing from research that I have done that fibromas are not normally defined masses and that is why they often grow back as the whole thing is not removed I was starting to get dubious about his knowledge of the disease.

He had already felt the lump and called it a fibroid mass, suggesting a fibroma right? Exactly what I think it is, what 2 other specialists and 2 GPs have thought it is. Anyway he leaves the room and comes back saying well it is not a defined mass so maybe it is not a fibroma!!!!! What the? Anyway he then says he should be able to tell where it starts and ends... I go you can, it starts here and ends there!!!! See...... Getting really annoyed now, especially as he still seems to have no interest in what I say and to be honest looked 1/2 asleep. He then says I'll have to have an MRI and see the footwear people for Orthotics.

MRI can be 6-8 weeks, so I asked what can I do in the meantime, nothing, there is nothing we can do you just have to "sit it out", not indicator or giving me pain killers or suggestions, nothing, he hands over a form to me and says see a nurse about these and basically shows me the door, well I left without saying thank you or anything. Can't believe he said "sit it out", we asked how long and he evaded the question and actually said these things normally go away by themselves, um does he know anything about this, know they don't, in the end when pushed and I mean pushed for an answer he went um, say 18 months. 18months, I have already said that I am in loads of pain, and he says I might have to sit it out for 18months, I will be literally sitting for 18 months as that is how I am coping with it at the moment by sitting, getting really really unfit in the process.

I could not believe the attitude of this guy or the way he treated me, I was almost in tears when I left because I felt not a lot had been achieved, it was like the idiot almost didn't believe how much pain I was in or how much discomfort I was in, well after he popped out the room for 5 minutes (we could see him happily chatting in the next room) he had decided that it could even be something different. He suggested Plantar Fasciitis which I almost laughed at. I have been to see a private and NHS physio both of whom said this was not that and that it was a fibroma, it is a lump not some inflammation. I am really hoping that the MRI proves this stupid man wrong.

Ahhhhhh, anyway, hopefully the MRI will help show exactly what is wrong and hopefully it is not a lump but everyone apart from this guy, including 2 physios, 2 GPs, 2 other specialist and myself who has done loads of scientific research says that it is a lump, if it is I am really going to want to take the pictures and shake them in his face.

Rant over for now though there might be more later if I or my wonderful partner who accompanied me remembers some details I have missed. 

Specialist Appointment today!!!

Plantar Fibromatosis / Plantar Fibroma / Ledderhose Disease foot appointment today!!!!! 

Today is the day of the foot appointment as everyone is calling it, I get to see a specialist about my foot for the first time in a year. I am not really sure what I am hoping they are going to say other than that there is some way for them to help. Fingers crossed that something positive comes from it.

Taken the rest of day off of work in case their poking and prodding provokes the thing to play up, can never work out why they can't just be gentle with it? Why when you say you have something painful do they feel the need to test whether it is actually painful and how painful it is?

I will keep you all updated with a post later before I go for bangers and mash at my parents.... Partner is very jealous of the mash :-)


Image from HERE (I'll try to post an actual picture of dinner later)

How to cope with a Plantar Fibroma/ Ledderhose

Ok so I have been struggling over recent weeks with my Plantar Fibroma / Ledderhose disease. As anyone who reads this will know I have been trying to come up with ways of coping with it and of course there are already ways of doing this that I have been doing for a while now/

1) Where good and supportive footwear. I personally find that the only footwear that I can walk in easily and comfortably is some running trainers. Running trainers do have some disadvantages though especially if  you are living in the UK in the winter, these are that they are normally not water proof and they are normally designed to let the heat out and not keep it in. Still for me they are well worth the compromise.

2) Can't say that this is the best advice but it has helped me, it is actually something that I don't do consciously and would not recommend it. I actually tend to walk on the outside of my foot. Not sure how easy it is to tell from the picture below (actually taken when I was sitting but tried to get a representative image) but that is kind of how I walk. The running trainers are what make this possible without snapping my ankle.

3) Get a hug from a cat - not sure this helps but she wanted to. (You can find videos of her here)

4) Lose weight, this is not easy to do when you don't want to walk but I would suggest trying diets like weight watchers or Slim fast if you need more motivation, Exercise why you can try swimming and cycling as they tend to keep the weight of your feet, even if one does give me ear infections and the other sore ankles.

5) Take the weight you do have off of your feet - I have found that sitting down as much as possible has really helped with the pain, sure it is not a solution to your problems but it does help the pain go away until you next get to see the foot specialist.

Fibroma diagram

Today I came across this image which I think show pretty nicely what I have. See HERE.

Woo today is Saturday and my appointment is Monday. Yesterday I had a little trip to London which was exciting with trains being terminated and other being diverted I ended up on packed trains with no room to sit and had to stand for quite a long period of time. In some ways this was nice, as I have been tip toeing around my foot for the last week it has not hurt as much, but standing on that train I could feel that this was just because I was being nice to it. I know I said this was nice, well it was nice to know that I have not been imagining the pain and it is still there.

A weekend of rest before the foot appointment is going to be nice