Some pain today with my Ledderhose

As anyone who read here often will know my foot does not always hurt too much and I like to be able to do things for myself and indeed for my partner so I am perhaps not as much off of my feet as I should be.  I have however now got orthotics and I am at the stage where I have been wearing these all day which is pretty good and only slightly quicker than the doctor ordered so I don't think I have been too naughty.

I don't know if it is because the doctor poked it yesterday but today I have been in quite a bit of pain. To be honest I don't think that I can blame the doctor from yesterday as unlike last time he was very gentle and barely touched the lump let alone put any pressure on it (again shows that he knew what he was dealing with more than the other guy did). I think that the pain today is due to one of two things.

1) I have been on my feet more: Being on my feet more does mean more pain and today I was up and about a lot and that often means more pain but this hasn't been too much of an issue in the last few days.

2) It is just one of those days: The specialist also said that I just have to grin and take the pain as until it gets to the point where I really cannot walk they will not operate on ledderhose. This also means that I will have some days where it is painful, I mean I do have a disease after all so what should I expect.

I am hoping that on a day to day basis I don't have too many days like today, even once a month would be annoying but I think that it is something that I have got go try and get used to and the problem is knowing when I can push myself, what are the days when I can stay on my feet? What are the days when I need to sit down as much as possible? I guess that maybe as I become used to the Orthotics and with time I might be able to start to notice the signs of a troublesome day earlier rather than later an so will be able to make provisions and try to sit on my bum as much as my job will allow me.

The good thing is that my wedding and honeymoon are coming up and this not only is a great thing for the obvious reasons but also because it means that I should be able to sit a lot. To anyone out there that has ledderhose from what I have seen on the net and from what I have been told by the specialists you want to consider surgery as your last option only and they mean once you cannot walk. Just think about how much weight and how much pressure goes through your feet and your toes not just in a day but with every step and if you start messing about with that and messing about with the nerves then that is asking for trouble and in all likelihood if you are currently capable of walking then it is going to be more trouble than you are currently in. Of course I am not a doctor and you need to listen to what they say to you and not what I am saying as I am only 1 patient and not qualified so what I am saying is these are just my ramblings.

I have had experience with both orthotics and steroid injections and I am trying to build up a collection of details on different treatments but I will now be travelling outside of my experience with the disease so will be asking upon others for information where I can and I am going to try to make my next one of those kind of posts about surgery.

Yey it is Ledderhose, I mean... um ....oh

So today was the day of the big appointment and the day that I would find out if I am in the rare but amazing group of people that suffer from Ledderhose aka plantar fibromas. It was a long wait for me to get the answer to that question but before I go into details I will say that yes I do have Ledderhose.

So to start the story out I was at work and things were hectic and I had to walk quickly to make my train, my train that was taking me to another station to get another train because the NHS put me in a foot clinic that is 40 minutes away rather than the one that is ten minutes away? Anyway I then had to get a taxi and is it me or are they getting expensive I was only in the thing for 5 minutes and had to pay £5 which seems a bit over the top to me.   

I got there in plenty of time as I hate being late and didn’t want to miss this appointment and have to wait ages for another one. I arrived at 12pm with the appointment at 12:10pm. Well the appointment time came and went and then so did 1pm and there were still a lot of people sitting around with slots before me so I knew it was going to be a late one. Come 2pm I was called in and was quite annoyed at this point and then still sat in a room waiting for him to come in and I could see him checking the MRI.

Well he came in and said to explain what was wrong. I went through it all and he basically felt the lump and said “yes that is Ledderhose” I had mixed emotions at that point. I was thinking YES I was right and your stupid assistant (this time I saw the top dog, see here for last time) was wrong and treated me rubbish for no reason but I also though NOOO because it could have been something easier to  treat and then I would be fine. This guy however made some interesting points:

• That as I am younger there is more chance of it regressing naturally and just going away and he actually knows a case (a colleagues son) who had the condition at a young age, it went away and went on to do ballet. 

•  He said that there was thickening and the lump and that he is not surprised that my toes don’t move when the last guy didn’t seem to have a clue as to why my toes don’t move.

•  He knew his facts and figures and said re-occurrence with lump removal is 60%, whole fascia is 10% but has complications etc etc.
• That there is no point in me having surgery at the moment and probably not any time soon as there is the chance of it going away and until I can’t walk the risks are not worth taking.

• That he is hopeful about the orthotics especially as I think I am seeing some difference after only having them a few weeks and honestly I do think that they are helping.

• He was aware of the other diseases and asked me early on if I had lumps in my hands or any other places which he wouldn't go into (I am happy to say I do not). 

• He also had an opinion on steroid injections, this implies that he has seen enough of this to form an opinion on whether they were good or not. He thinks they do nothing. 

I think that this guy was great, he really seemed to know what he was talking about and had treated the disease before. He knew what the risks were and what to say and really seemed to appreciate that I had done proper research and knew a little a lot of what we was talking about. In fact the only thing that I was not aware of was the regression for younger people and I think that might be good news for me and is a HUGE reason to stay away from surgery as I got the impression that after surgery the chances of it regressing if it reoccurs are much slimmer. 

Overall I am happy that I now know for sure what it is, however at the same time it is annoying that it is this pesky thing. Right now I know for sure that this is what it is it must be time to think about Rare disease day, it is less than a month and only the rather important matter of my wedding is in the middle of that. 

Orthotics to treat plantar fibroma

Orthotics to treat plantar fibroma


I thought that it was time for my second post of the different types of treatment that are available for those with Plantar Fibromas. For simplicity I will try to stick to the same layout as I used last time and will try to cover this in as much detail as I can find. Note that I am not a doctor or a specialist and that everything on here is just my experience with the disease and some information from on-line resources and that you should trust what your doctor tells you. I am not responsible for what you chose to do so please don't make your choice based on what you see here and blame me.    

How and why do orthotics help a plantar fibroma / ledderhose disease?: 

So the idea behind orthotics is that they help to reduce the amount of pain caused by the plantar fibroma by decreasing the stresses and strain on the fibroma. This is achieved in 2 different ways:


1) Taking the strain away from the plantar fascia in general. 



copied from (1) http://www.footankle.com/Plantar_fibroma.htm


The above diagram is present to try to show the location of the fibroma in relation to the plantar fascia. As you can see in many cases the plantar fibroma will be located in the middle of the plantar fascia so that any stretching or stress on the fascia will increase in stress and therefore pain being caused by the fibroma so that taking away this strain should help to decrease pain.


2) Taking direct pressure off of the lump. 


I don't know about other people with this but I find that direct pressure on the lump causes me immense pain and any way that I can avoid this is great. So of course on thing is to try to wear trainers that have a gap below that lump so that there is no direct pressure. Annoying I can't find any pictures of exactly what I think that would do but I will try and explain it by basically saying that if you imagine that you have a lump sticking out of the bottom of your foot well the insoles then have a gap in them to accommodate the lump. I honestly don't know if this is right or not perhaps a specialist out there would like to correct me if I am wrong? As Mine don't really have any obvious sign that this is what they do. 

Results?: 

Well to be honest as with most things about this disease there is not a lot of information out there and I have very little to go on. From what I have seen these may be useful early on and can help stop progression of the disease a to point where it is causing lots of serious problems. (2)

Side Effects: 

If the things are fitted properly then there should be no problem at all but the wrong ones can increase the two things that they are trying to eliminate and thereby exacerbate the problem that is trying to be solved. 

My Experience: 

Orthotics are one of the things that I have tried, well actually I am in the process of trying them now. I only got them last week but I am optimistic that they are going to be able to help decrease the signs of the disease for a little while. What actually happened with me is that I went to the doctors and they referred me to this awesome guy (see here Helpful Orthotics man) who stuck my foot into a box and said I was going to have several different types of support in them to try and help my feet and stop them from twisting and aching and well pretty much try to solve every problem that I have with my feet. Fingers crossed as at the moment I do think that I am in less pain at the end of the day than I was last week when I was not using the orthotics quite so much. 


Below I have reposted some pictures of my orthotics (the black ones). 

Plantar Fibroma Orthotics (the black ones)

Plantar Fibroma Orthotics (the black ones)

Conclusions:

Although orthotics are a promising approach for some to help manage the disease they are just that a management device as they do not stop the lump from being there and ultimately it is still there and you can't have these insoles stuck to the bottom of your feet all the time so in slipper or bare foot the situation hasn't change. We need a cure that works...

References: 

(1) http://www.footankle.com/Plantar_fibroma.htm

(2) http://emedicine.medscape.com/article/1061903-treatment

Blog is posted in association with Plantar Fibroma Forum

Just an update...

Right this is all done on my phone so any mistakes might not be my fault for once. I had some spare time on a train today and thought I could write a blog post.

The first thing that I wanted to cover was my Orthotics which I got on Monday and today is Thursday. I know they will not work for everyone but I'm beginning to have some hope that they will work for me. Over the past three days I have not worn them much and then today I was a little bit naughty as I used them for three hours in a row although I was seated for Quite a bit of this. The difference when I put the trainers on is subtle I can feel that there is extra support and like to think that over the course of a few hours I can tell the difference. I tried standing for a little bit today, just standing still as this is what was one of my most painful things and at the moment it still is and I could feel the pressure building. Not wanting to push the limits of them too much I took them off and switched to my normal running trainers before heading for the train. Apart from the insole containing trainers being much warmer and drying which was to be expected there was no difference, ok so actually there was.

Anyone who had read this blog will know that I not only have problems with pain in the foot but also that I twist my foot right over to protect from the pain and have a bad ankle on the other foot.

1) The ankle - this was ok, despite going up and down stairs it felt good, hopefully this will continue to be the case and that'll be one problem dealt with by the inserts.

2) The twisting - wow, after wearing the insoles I sure notice the difference that they make. After taking my feet and placing them in the running trainers everything felt unnatural, it seemed normal again after a few minutes but I guess this is why I have to break them in and hopefully they can adjust my walking completely but perhaps for this to happen I would have to get some for my slippers and never walk barefoot.

3) the plantar fibroma - It is hard to tell from such little use. When wearing the insoles the lump was again not too bad and when switching back to the running trainers I started to get the odd twinge. I'm not saying that insoles are the right way for everyone, they might not even be right for me but as a minimum I am now hopeful that they will at least help delay the disease getting to the point where it runs walking life and the next step is to try then in shoes to see if I have to get some new ones fire the wedding.

I have also been thinking about rare disease day as it is something that interests me greatly. I have mentioned it to my partner who was encouraging and as the special day coincides with her last day at work we're thinking of serving cake with a helping of Ledderhose information. I have also mentioned it to my best man who said we should at least do something, do with those encouraging comments behind me I'm thinking of implementing something.

Although the above has the potential to raise money if we sold the cakes who is there to give the money to? In a post yesterday I talked about the rare diseases and I also did a search on the official site of all UK charities to see what was out there. Looking for Ledderhose or plantar fibroma(tosis) gives no results so if I did raise any money then there would be no relevant group to give it to. The chance to start a charity is there but that requires start up money and the time to manage it of which I have neither. But lets assume that there was a charity, who would that charity give the money to? With no research really going on into this you can't even give the money to them so you would only be able to use it to give support to those who have it and can't afford what they need to get round. Although helping these people would be great it would not get us any closer to a cure which is what some people are waiting for. I have to say that I think I am lucky to be living in the UK, as although I have find that the NHS is slow getting things done I do get them done and I don't have to pay. I have had physio for two conditions, the steroid injection, the Orthotics and an MRI. That's not too bad considering I only went to my GP with this 25 months ago.

Fingers crossed that we can raise awareness, even raise funds and who knows help people get on the path to help and wanting to find a cure. After all I hope to raise awareness in a scientific research building.

I'm thinking of doing a few posts covering all the different treatment options in as much detail add I can and maybe I'll find something new and useful in the process.

Raising Awareness of Plantar Fibromatosis

Raising Awareness of Plantar Fibromas / Ledderhose Disease:

If someone comes up to you and says they have something like asthma you go ok fair enough. Someone comes up to you and say they have a Plantar Fibroma (or Ledderhose disease) you go "eh!". Almost everyone who I have had to explain what I have to has not had a clue what it is, I also think that some of the so called specialists that I have seen have not been up to scratch with what I and many others have.

The problem with Ledderhose is that although it is debilitating to those that suffer it is not life threatening and how many do you know that have it? In all likelihood you are looking at this page because you are the only person you know who has it and are looking for others or you've come to the wrong place but I don't know anyone other than myself that suffers with this. So how do you convince people that it is something that needs to be looked into? Why should people research this little known and rare disease? I guess the answer is that they should not, I mean with disease like cancer out there why bother wasting your time on something like this? Well I think that the pain that those of us that have it have to go through means that it deserves some attention and in some cases it leads to depression, it leads to people being unable to work and with the related diseases that could also benefit from the research surely it is worth a shot? I also think that this is a disease which, if studied correctly, could be cured in a relatively short space of time whilst something like cancer I don't think we will develop a way to properly stop it and being in the cancer research field I should know.

So I think that the only way  anything can happen is to raise awareness but with our numbers so little and the numbers of people that have the internet and are connected and suffer pain enough to want to do something about it being even less what can we do? The answer is that I don't know and I wish I did, it is frustrating for people like me and those on the forum - Plantar Fibroma Support Forum that we have this and we want to do something about it but where do we start?

I think I have made and start and that brings a smile to my face. How many of my family, friends and work  colleagues knew 3 years ago what a Plantar Fibroma was? None, whilst now they all have at least heard of it and some have tried to get a better understanding of it and certainly an understanding of the different types of treatment that have been tried on me so that if someone else was to come up to them and ask they would know and this might provide relief to them. I also hope that the above mentioned forum, if it gets enough members, can have an impact as it can be a place where everyone who suffers with this can get together and we can talk, discuss and arrange to do things that help us and everyone who has the condition.

Earlier today I came across this Rare Disease Day 2012 and I am wondering if it is something for me.

It seems that this is a day that takes place pretty much across the entire globe to raise awareness of rare diseases. I wanted to check and see if Ledderhose / Plantar Fibromas were on this list so I went to http://www.raredisease.org.uk/ which directed me to Orphanet which came up with the following entry Plantar Fibromatosis Although there is nothing there at the moment this seems to confirm to me that this is on the rare disease list and took me to the US version which also had this on the list NIH - Plantar Fibromatosis (though this does state that - ORDR lists rare diseases for information purposes only and does not guarantee that a condition is rare.) 

One this that came from this is that it list research projects on this disease, the result for Ledderhose is equal to zero at the moment so I think it is fair to say that something should be done and that I should do something for Rare Disease day even if it is just to put up a poster.


On other news my foot has been hurting again today and the pain did really ramp up as the day went on. Interestingly and hopefully promisingly I am sure that at about 4pm when I stuck on the trainers with the Orthotics in my foot did hurt a bit less, whether this is actually due to the Orthotics or whether this is just a fluke I do not know but fingers crossed that they are going to help me. I am finding the adjustment hard, not wearing running trainers is odd as normal trainers are not as springy but are much warmer and dryer given the current weather conditions in the UK and as my lump hurts more when it is cold this is hopefully a good thing.

I am also looking forward to celebrating my Birthday on Friday, it will be my only birthday with a fiancée so have to make sure to make the most of it by being at work all day.

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/