My Day

Right then so I am going to start off by taking the big positive from today after my scare this morning my right foot is not hurting. Now because it is not hurting doesn’t mean that the lump that I felt has gone away because it hasn’t but at the same time it is a huge relief as I thought that when it hurt this morning that was it and it was going to be as painful as my left foot.

It is fair to say that right now I am feeling a bit stupid because my left foot took a few years before it was hurting all of the time and another 6 months of more or less constant pain before it reached anywhere near the level of pain that I am in now. On top of that today I managed to do a lot more lab work sitting down and this did help the pain in my left foot, still hurts a lot when I stand but that’s nothing new.

Now that I am writing lots of science posts for the blog I am wanting to write something a little less hard and so was wondering what I could do that would still be related to my foot and also raise awareness. I have always wanted to write a book, sure I was figuring that it would be a crime-thriller book as I love all the books by Jeffery Deaver and James Patterson and many other authors like that but I do not have the knowledge to be able to write that sort of thing. I was then thinking I could write a sort of short story type thing (see how good I am with words) that is partly based on real-life in which a kid finds out he has Ledderhose and the story through that. Not sure whether I can make it interesting enough to be a decent read but I don’t think it is going to hurt me trying, I mean stick in a love interest here (thinking of 14/15 when I say kid and not 4/5) a few bullies there and maybe it can be interesting. Then all I have to do is put it on the internet for free and watch it sell in its millions and soon everyone will now about Ledderhose disease muahahahaha.

Still the odds of that happening are very unlikely as for one I have to write the book and for two I have to make it interesting and for three I have to actually get it online and the list goes on. Still I think that it would be a really cool way of spreading the word about both Dupuytren’s disease and Ledderhose disease, I mean I could easily make a diary and science mix by just compiling my different blogs post together but I am not sure that I want to do that.

Anyway...

A promising update on Google Search results

I wanted to do a follow up post to one that I did last month top-10-blog-and-forum-in-google. This is not because I want to brag about good Google rankings as I have actually not yet looked at where the blog and forum are placed. I want to do this because the post mentioned above is quite well viewed and I am under no illusions that this is probably people wanted to become a top 10 blog in google rather than those looking for information on Ledderhose. I guess for anyone who wants that and is looking at this then well write your blog on something rare and then you get the higher rankings.

The real reason that I want this to be well placed in Google is because I have already met someone on here who chats to me about this disease and I would like to meet more and I would like this place to help more people and the better the placement in Google the better the odds of the right people finding this and that would be great.

I am going to start with the more serious searches that I did last time and then I am going to try searches that people have actually used to find the blog and forum:

If the result is in the top 10 I do not include any below this but if it only appears below this I have tried to look as far as the third page in Google. N/A means the search was not done and No result means that it was not in the top 30. 

Search Term	Blog Result Last time	Blog Result	Forum Result Last time	Forum Result
Ledderhose blog	7	1 to 7 & 10	No result	No result
Plantar Fibroma Blog	No result	1 to 6	6 & 9	11 & 12
Ledderhose Running trainers	7	1 to 3 & 10	N/A	28
Plantar Fibroma Support	No result	10	7	6 & 7
Plantar Fibroma Forum	8	4 & 5	No result	2 & 3
Plantar Fibromatosis physio	No result	2	No result	No result
Ledderhose	No result	6	No result	No result
Plantar Fibroma	No result	10	No result	No result
Ledderhose orthotics	N/A	3 & 4	N/A	No result
Below are actual searches used not covered in the above:
how to deal with plantar fibromatosis pain	N/A	6 & 7	N/A	No result
Ledderhose worst case	N/A	3 & 4	N/A	No result
are there any insoles that help plantar fibromatosis	N/A	1	N/A	No result

Overall that is really good, there are none that are lower than last time and many that are higher, I think that it is fantastic that it is now on the first page if you search for Ledderhose or Plantar fibroma and is number one if you search Ledderhose blog.

Incidence and treatment of recurrent plantar fibromatosis by surgery and postoperative radiotherapy.

Today I am going to post a little review if you like of the following paper that is available here:

http://www.ncbi.nlm.nih.gov/pubmed/14706583

This is something that I am hoping to do whenever I new paper comes out, I will try to find some on Ledderhose but I think that it might be more fruitful if I also take into account the related diseases or anything else that I think is relevant.

Incidence and treatment of recurrent plantar fibromatosis by surgery and postoperative radiotherapy.
Am J Surg. 2004 Jan;187(1):33-8 Authors: de Bree E, Zoetmulder FA, Keus RB, Peterse HL, van Coevorden F.

Department of Surgical Oncology, The Netherlands Cancer Institute/Antoni van Leeuwenhoek Huis, Plesmanlaan 121, 1066 CX Amsterdam, Netherlands.

My review:

I am not sure if it is freely accessible to all but I was able to access it no problems but then I work in a lab so maybe this had something to do with that.

So this paper is about the Incidence and treatment of recurrent plantar fibromatosis by surgery and postoperative radiotherapy. As with most things like this they start out with an introductions with many key points which I am sure a lot of you will know.

• PF and related diseases have unknown cause though it may be triggered by trauma and there have been suggestions that some genetics is to blame as well. 
• The disease is slowly progressive and generally responds, at least initially to treatments other than surgery. This treatments are like those I have received such as orthotics and steroid injections. 
• Surgery is only considered for those that are highly symptomatic and has a very high reccurrence and can  result in many problems. 
• In this article they are looking at patients from Holland and are looking at surgery and radiation as an aid for surgery. 

Of course in order to do a study like this you need patients and they gathered data from many sources and estimate that in Holland at least the rough frequency of this is about 1 in 100,000, so quite rare. I have tried to summarise their table 1 in the graphs below as I find it makes for easier viewing.

Graph 1: The total incidence in their records in men and women.

Graph 2: The incidence in men, women and total separated by age of onset.  

So what I think that graph 1 shows is that although I have seen quoted that it is 5-10 times more common in men here there is maybe a 1.2x greater prevalence in men which I doubt is particularly meaningful. I think graph 2 however does show that the age of onset in men is typically 10-20 years earlier with it peaking in in the 30 year old bracket whilst women peak in the 50 year old bracket. This is quite a clear trend and maybe explains why there is the misconception that men have a greater likelihood of getting when this data suggests otherwise. 

For the purposes of their studies they look in a select group that they have had access to with an average age of diagnosis of 25 years old and interestingly they found that those who suffered from it bilaterally typically had a family history of plantar fibromas or related illnesses and they were also more likely to have one of the related conditions. 

Of their group at diagnosis all but 3 were suffering and of those 3 -  2 were in pain within 3 1/2 years and the other one actually naturally regressed. I like to hear about natural regression and it is nice to hear of it happening.    

In total there were 26 operations on 9 patients and 11 feet. So as you can tell from that 2 of them had a bilateral case of this condition, from such a small sample group it is hard to tell the level of it appearing in both feet but I am sure that I have heard that it can be as high as 40% and some say only 20% of people get it in both feet and that is about what they are seeing here (approx 20%). 

They did have different kinds of operations, so for those who don't know you can either have the lump itself removed and very little else or you can essentially have the same but have more of the surrounding tissue removed or you can basically have the entire tendon in which the fibromas grow removed. In total they show that for 10 patients with the above operations there is a 90% rate of return. 

As I said near the start they also look at treatment post-op with radiation and on the face of it the results look good. 5/8 come back without radiation and 1/6 come back with radiation, they say that with radiation there is an increased risk of other problems and one person required a below the knee amputation. Note they are using a very small data set.

They do follow ups and I am not sure what they mean exactly when they say that all but 1 are disease free as they go on to say that 2 are unable to walk, 2 are sort of ok and 1 has had the below knee removal. Make of that what you will but for me is shows that surgery should only really be used as a last resort and that it is important to take everything into consideration before considering not only whether to have it but also whether to have the radiation chucked in as well. 

Something to think about, pain pens and hot feet

I am not sure exactly what to say today, my foot has not been great but it has not been at its worst but I am going to try several new things to see if they can at least help alleviate the pain. The Old Bag as she likes to be known has been very helpful and thoughtful and was recently talking to one of her friends about their things which I will not go into here but they had a few recommendations that help with their pain that it might be worth me trying.

So one thing that was recommended was a pain pen, can't say that I really knew what they were but for an example here is a link to the one that I am going to be presented with by the Old Bag who has kindly offered to provide for me: Pain Pen

They are supposed to provide pain relief using Transcutaneous Electrical Nerve Stimulation (TENS) which works to stimulate the release of the body's natural pain killers. The reviews from Amazon are fairly positive and I can see no harm in giving it a try. From what I have read you do not need to apply too much pressure to the afflicted area and it seems to work for some and it might provide some relief for me and until there is a cure or something I see no harm in  trying my options out and this seems like it is worth a try.

Another thing that I was think in some small part inspired by the Foot Spa that I was kindly given for Christmas is that perhaps some sort of heated footwear for when I am resting or sleeping etc might be helpful in reducing the pain as when I using the foot spa things do feel better. I have to say that if you are a man with Ledderhose and want the same thing as I have mentioned above it is a real pain as this kind of product seems very much geared towards women and there are lots of pink furry microwavable boots out there in sizes 4-7 (UK) but trying to find something for men was a bit of a struggle and a mission but I managed to find these Heated Slippers for £10.

I of course will keep everyone updated as to whether the pain pen takes some of the pain away and whether this slippers rather than just keeping my feet warm which actually is an issue also help with pain. I do find that one of the triggers for increased pain is the cold. So with the weather outside at the moment dropping to something like minus 5 (Celsius) I am very grateful to have my insoles so that I can wear normal shoes as otherwise my feet would be getting freezing and my foot would be really hurting a lot.

I am also hoping that with the use of pain pens, insoles, heat, sitting and lots of people looking after me I am going to be relatively pain free on the day of the wedding and to be honest I think that I am going to be enjoying myself so much that I am not really going to notice and it is probably going to take a word from the people that keep an eye on my foot to remind me to sit down otherwise I will be suffering with it on the Tuesday but then I do have several days to stay off my foot before the honeymoon where there are some trips that will require some walking and I just hope I am up to the task without moaning as I would hate to moan to my new wife whilst we are on honeymoon and it would be a real downer. Then again I will have this pain pen and I will have much nicer and warmer weather so hopefully things will be great and everything will be perfect much like she deserves.

Wednesday with Ledderhose

Today was a tough day and not particularly because my foot hurt, which it did and not because of money which is at a bit of a stretch at the moment with the wedding and a leak and my partner changing jobs but because my partner wasn’t feeling great, she looked a bit down which is probably because of the money thing and because of being ill and I hate to see her like that. What can I do though, I managed to insist on her not going out and teaching a lesson this evening even though because due to admin stupidity of the company she is with she has had to cancel tomorrow’s lessons because she needs to have some training. Well I love her and hope that we can get away from it for 2 weeks over the wedding.  

Still on the interesting side of things I got an interesting comment on one of my blog posts today (comment on the top ten blog and forum in google post):

Pete said “Hi, thanks to your site, I came across the new site "itsinyourhands" through the link above. I've had Dupuytrens for a good few years now but didn't do anything about it (I didn't even know there was a name for it!) until it became obvious it was gradually getting worse. To be honest, I'm really not a pill-taker & always look for a natural alternative for an ailment. The thing is, a lady I know who works with herbs/oils etc, recommended I take a look at an enzyme called Serrapeptase. I did & have been taking it for 5 months now with great results. The rope-like build-up on my left palm has broken up into pieces & getting softer! I reckon at the 12 month stage I might be rid of it. I'm trying to spread the word - it's working for me, so why not other folks? Many thanks Pete  “

I have tried to look a little bit into Serratiopeptidase and as far as I can tell there is no hard evidence that is does anything much in medical terms. I have seen a few little things here and there suggesting that it may be able to help with Ledderhose as it is an enzyme that breaks down proteins and the bulk of the lumps that form are proteins therefore it can break them down. However there is no evidence to suggest that this is the case and therefore at the moment I for one am not going to give it a try but if you have found it has helped you then please comment here as so far I only have one persons word to go.

I think that it is great that the right kind of people, those who can help and might need help are finding this blog. 

To be honest I guess if things got to the point where I was considering surgery then I would first consider the options above. Today my foot was bad again and this is starting to annoy me as that is two days in a row, have the orthotics worn themselves out already or am I just going through a bad patch before the wedding which will of course finish in time for my stag do. 

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. 

The relevance of things:

I don't think that I have all that much to add on the foot front today, I am hoping tomorrow to finally get round to doing the post of me in different footwear to see how they affect my walking but I can't make any guarentees as I have a lot to do over the weekend including painting a wall, cooking some meals to freeze (even though we already have enough to last until the wedding) I am hoping to cook a nice and healthy risotto which is actually what I was given by my mum when visiting today.

Things with the foot are still good at the moment and and the Orthotics I think are doing their job and long may it stay that way. I think it is fair to say that over the coming weeks I am going to find it hard to not post on here about the wedding and whilst I want to try to keep to things that are relevant I think that how I live my life with the disease is relevant and the fact that I am in the process of getting married is a huge part of my life and my partner is such a huge support to me that it would be silly to think that it is not part of how I cope with it and is not relevant.

Would be nice to be able to think ahead and not have to take your feet into consideration wouldn't it?

My foot doesn't hurt too much today and I have been very naughty over the last three days I have worn the orthotics more than I have been wearing normal trainers, this is because I do feel comfortable in them and I do feel like I am breaking them in and that they might be helping.

I have to admit that standing still hurts the most, this really hurts a lot and so when I am in the lab I try to do everything on my chair and hope that it is ok, so far so good and nothing dangerous spilt on me which is always a good thing.

I have an appointment on Monday to discuss my MRI results and I have to say that I am really not all that sure that they are going to say that it is a plantar fibroma and I am even doubting myself. Whatever it is it is painful and it is a lump in the arch of my foot. I am not sure if the doubts are just because of the annoying appointment or what. I mean I do think that a lot of my symptoms match up but my lump is not very discrete and it doesn't stick out of my foot that much and I just don't know any more. I guess the wondering will be over on Monday. Whatever happens I will still keep posting about it and I will still keep up the forum and the blog in order to help those that do have it as whatever I have got, if it isn't a PF, has certainly given me a taste of what it would be like to have one due to the matching symptoms and anyone with it deserves as much support and help as they can get.

I guess I am also hoping that it is not a plantar fibroma and is in fact something that is much easier to treat and they can go ta da and it will all be good from now on (as if that is ever going to happen).

The wedding is drawing ever closer and I really can't wait I just want to be standing there waiting for my other half to walk down the aisle, well I guess really I want to be sitting there waiting for her to come down the aisle as will my foot I am only going to stand once the music starts playing. Again whatever happens I am going to have a great day, a fantastic day and show this foot that I am the boss and it is going to let me do the things that I want to be able to do. I will have to see what sort of time I have but if I get the chance I will have to post at least a couple of pictures to here of me on my feet before we head off to honeymoon. Were are going here :-)

Original image: http://riu-hotels.redtag.ca/images/riu-tikida-dunas.jpg

That is another thing that does annoy me about this bad foot of mine. When we were looking to book excursions there were several that we avoiding because it said that you would have to be standing and walking for a couple of hours and we felt that there was no way that I was going to be able to do that and it would be nice if I could look ahead and not have to think about my foot. Another example of that is that I would have loved to have done paint-balling or something like that for my stag do but again taking my foot into consideration we thought that bowling would be a better option as long a nobody drops a ball on my foot.

Would be nice to be able to think ahead and not have to take your feet into consideration wouldn't it?

Plantar Fibroma Forum

1000 page views on Plantar Fibromas

So now that I have hit 1000 page views I thought I would do a kind of top ten moments if you like on the blog so far. Not sure how close to ten I am going to get as it has come round pretty quick as I only started this in November and I think that it works out at about 20 views per post which is not that bad as I was only getting a few if any to start with. 

1) Understanding: Post referring to -  Understanding and Original post 

So I think that the number one thing about doing this blog has got to be the increased understanding that the people close to me have of what I am going through and actually just how much pain I can be in. I know that my partner who was fully aware of the problem was shocked at just how bad I had it and I found the blog a really good way to talk about it as well as in person. But not only her, my best man for the wedding and my mum were also reduced to tears upon hearing just how much trouble it was causing me. Everyone has been very supportive and some people (they know who they are) have been pushing for me to SIT, SIT, SIT and I think that all the sitting I have been doing has been helping. 

2) Meeting someone else with the disease: Post referring to My lovely lady lumps

I am not sure if this was really the blog or if it was the forum but in the last couple of weeks I have been in regular contact with someone who has the disease. It is fair to say that they have it much worse than I do but we have been through several of the same kinds of treatments and together we hope to be able to raise awareness of what it going on in our feet and hopefully band together some more of us so that we can get something done about it as the current solutions are just not acceptable and are certainly not well enough understood. She now has her own blog so for anyone interested see here.

3) Finding out about Rare Disease Day: Post referring to Rare Disease Day

In the process of trying to think of how awareness can be raised I came across an event that is called rare disease day. This is a get together that takes part pretty much worldwide with the ambition to increase the awareness of lots of different rare diseases. I had a look at and plantar fibromatosis or ledderhose however you like to look at it is considered a rare disease. This year it takes place on 29th February (leap day and so it only once every 4 years and so is rare). 

4) The number of views: 

Ok so this isn't a single post or a single moment but rather the coming together of everything. I have Google analytics linked to this blog so that I can see in more details what is going on. I get visits from different places which is nice but the biggest thing for me is that there are several different people, mainly across UK and USA that are spending around 20 minutes on the sure and are looking at lots of different posts and this means a huge amount. One of the main reasons for me doing this blog other than to vent was to let other people out there with this know that they are not alone and that there are lots of different treatments out there to try.  

5) How people are finding the blog: See this post - Top 10 blog and forum in Google

I was really pleased when I started doing Google searches using relevant search terms and the blog and the forum both came up. Also when I look at searches that people have used to find the blog and simple searches like "plantar fibroma 2012", "cortisone injections for reducing plantar fibroma" and "are there any insoles that help plantar fibromatosis" come up makes me realise that perhaps the right people are finding the blog.

6) Getting my foot spa and chair: See here - Foot Spaaaaah

So these things happened because of the blog and because people wanted to help. The foot spa was a Christmas present that was researched and purchased by someone who is fairly over protective of my foot (for my own good) and I really appreciate having it and would probably not have ended up with it without have the blog. The same goes for the stall that I currently use for washing up and the like, this is on loan from someone because they read the blog. 

7) My foot appointment for the orthotics: See here - A good appointment 

I was in quite a bad place before this appointment as the guy who I went to see about my foot, the so called "specialist" was a completely and utter waste of space and didn't know what he was talking about and just wouldn't listen to me. I went to this appointment not feeling that optimistic but the guy was great and he explained everything in a way that I understood but it didn't seem like he was talking down to me which I often feel having a scientific background. As it is I am in the Orthotics and I think things are going well with them. Hopefully for me they will at least resolve the issue until after the wedding and maybe far beyond.  

I think making it to seven is not a bad thing so now I will list a couple of frustrating things to get me ever closer to those 10 things.

Frustrating things: 

8) Lack of people following / joining the forum: 

I wish that I had a better conversation rate of views to members or followers. I understand that a lot of the page views will be by the same people especially as I have previously said many of the people that are coming here are coming back and are viewing multiple pages but even so it would be nice to see a but more obvious support.

9) Money - Well lack of it:Relevant post 

The book I mentioned that looked really interesting and maybe helpful in terms of understanding would be great to have but at over £100 it is such as crazy price hat there is no way I could ever afford it. Also there is the fact that people with money can get whatever treatments they want and pretty quick whilst the rest of us have to wait.

Well that is a rap as they say. Ok so I only made it to nine but I think that is quite good and perhaps I will do another post like this if I reach 10,000 views and then again at 100,000 and 1,000,000. Certainly would have raised awareness if I get to those sorts of numbers. 

Plantar Fibroma support forum

My foot an update

I am having mixed feelings about my foot at the moment. Sometimes it hurts a LOT and other times it is not too bad and I think what is all the fuss about. I am not sure to what extent this is due to the orthotics as I know that they require an adjustment and maybe this is just the process that I am going through.

I have to say though that overall the orthotics are more comfortable than I was first experiencing, they seemed odd and they seemed really really hard and I was wondering if they were going to do the job or not. Now I am starting to think that maybe they can and that maybe they are going to help. I am still in a great deal of pain when I am standing on the spot which has always been a big problem for me however when I am walking things don't seem quite so bad as they were before.

I am still trying to use the foot spa as I really like it and it feels quite good and it is a really nice way to sit back and relax in an evening, thank you very much for the nice Christmas present those who got it for me. See here for details Foot Spaaaah.

It may only be 7:50am but I am hoping that today is going to be a good day and with 19days to go I can't wait to the wedding. I will probably be taking a break from here during the 2 weeks of the wedding and especially when on honeymoon as data will cost a lot. See my twitter at the time though as that might be maintained a little bit better over that time.

Plantar Fibroma support forum

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

Another Fibroma Blog

Everyone out there that is looking at my blog for information from someone that suffers with Ledderhose also make sure to check out http://rareplantarfibromatosis.blogspot.com/ and of course the forum http://plantarfibroma.freeforums.org/

 K5KPYNN7XHY2

Foot Spaaaah: Helped my Ledderhose

Foot Spa:

At Christmas I was one lucky man as I was given a foot spa to give my foot little feet a bit of a break from the plantar fibroma pain and allow them to relax and sit back in bubbles, heat and vibrations. I think it is this one or one like it and I am shocked at the negative reviews that I have seen so far MySpa Foot Spa.

Basically it is a little tub that can hold your feet, it has little nodules on the bottom and you press the button on the top to get it started, one press is massage only which I have to say I don't find does much but my partner loves it, whilst a second press will give you bubbles and some heat to help keep the water warm. I tend to start by filling it up with pretty warm water as with a product like this you can imagine that the heat that it does provide isn't fantastic but then for the price and time they say you should use it for I am ok with that.

I whack my feet in and I don't know if it is just the warm soothing water or the bubbles but the aches and pains in my feet are swiftly forgotten, they fade away and I can relax. The actual product itself is quite noisy but I can hear the TV over it very easily and can really relax, might be easier with some headphones on though. Not much else I can say about it really other than when I take my feet out they do start hurting again but for about 20minutes I have much less pain and love to relax in this. Since the flu left me I have been trying to use this once a day and enjoy my time in it.

Below is a picture of the foot spa followed by a video of it bubbling away.

The foot spa

I have also started a twitter account, this is going to be much more general than me talking about my foot but may reach a wide audience and help to increase support on the forum which would be great. My Twitter feed is shown in the sidebar and can be accessed by

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.