Ledderhose update: Monday

I don't really have much more to post about today so I will have a moan in minute. I have been slightly productive today as I have contacted several more people about whether they would be willing to do an interview. I am now trying to get people that have had any kind of treatment so if you are willing to do this and have LD or DD then please get in touch...

Right so with the pitch over today I am just going to complain about my foot today. The first real twinge was at 10:26 (I checked my watch) and I could feel it throbbing through journal club (12:30-1:30) and come 3:30 I was ready to give up and just had to sit down for half an hour and let the pain subside. I then battled through until 6pm as well I had to and I had an important experiment to do and now I am at home and in a lot of pain when I am just sitting here typing this. I hate the pain and I hate this disease but I am doing what I can and I have great support and lots of people that care for me and that helps a lot.

The pain did vary between locations today as when I was standing the pain was very much in the arch of my foot and really really hurt and when I am sitting the remaining pain is mostly down near my toes but this isn't always the case and just is what happened.

The other thing that annoys me slightly is that you cannot get RT (radiotherapy) on the NHS for this disease but from what I have read and heard it is one of the best treatments as worse case it is going to do nothing but it can be great. Also everyone is saying how it only take 10minutes max to do the dose each day, are the NHS machines really busy all day every day that they cannot fit in the few Ledderhose patients that are going to need this kind of treatment over the course of a year?

Anyway I don't get any days like last Tuesday and Wednesday though it is surprising how close the margins are as today was really bad but I think it is more about the start time as today was really really bad from 3pm ish onwards when last week is was from when I woke up. Though on good news I didn't notice my right foot today.

:-)

Xiaflex in cells - Trying to help you understand, maybe

So today I am going to try and review this paper In Vitro Study of Novel Collagenase (XIAFLEX®) on Dupuytren's Disease Fibroblasts Displays Unique Drug Related Properties. This paper is open access so you might like to take a look for yourself or have it open at the same time as you read this and it might help. I don't understand all of it so good luck!

I say try because there is a lot of scientific content in this paper, a lot of stuff that I have not done in the lab before and this makes it harder for me to work out exactly what it means, I will however try my best to understand it and where possible try and explain it in as simple terms as possible.

To start with for those who don't know Xiaflex is a treatment for Dupuytren's disease (DD) and potentially Ledderhose disease (LD), it is a collagenase and the main component of the lumps in DD and LD is collagen and so it breaks them down.

Right onto the paper, where possible I shall try and bullet point it and I am going to place a summary at the end where I will put what I consider to be the key points.

Introduction:

• DD is a common and benign disorder. 
• The cause(s) of DD and LD are unknown however DD has been linked to genetics, smoking, diabetes, alcohol, anti-epilepsy medication, occupation and local trauma (so all the usual stuff). 
• The group of people at the most risk are Caucasian men of North European descent that are 40 or over with highest incidence in USA, Scandinavia, Britain and Australia. 
• The disease shows cell proliferation, high levels of collagen and extra-cellular matrix remodelling. 

They also make a key point which is what frustrates many of us with the disease and this is that:

"Treatment of DD is not curative" and this means that rather than trying to rid the body of the disease they are just trying to remove the symptoms.

One current treatment that is showing promise is Xiaflex which is a collagenase that digest the triple helical structure of collagen and therefore removal the lumps and whilst this is significantly less invasive than surgery it does have a much higher level of recurrence.

Aim: Their aim is to investigate the functional effects of Xiaflex in comparison to Collagenase A when used on cells cultured from DD nodules, cord, fat and skin. They look into various different aspects of the cells including looking at the cell growth and at gene expression.

So I am going to try and go through this and explain the key points one figure at a time to make it easier to follow.

Figure 1: Here they just show the process through which they have derived the cells and then the experiments that they are planning to do on them.

Figure 2 (and Figure 3): Here they are measuring the ability of the cells from the DD nodules and cords to grow in the presence of  Xiaflex / Collagenase A and whether they are able to recover from this treatment in 24 hours by removing the drug and continuing to monitor the cells. In Figure 3: They also look at fat and skin cells from DD patients in a similar way.

• They find that without treatment there is no significant different between the nodules and cords compared to the skin and fat although the DD nodules and cords do show a faster growth rate. This makes sense as it is a proliferative disease.
• Treatment with  Xiaflex / Collagenase A decreases all of the things that they are measuring in ALL cell types in a dose dependent manner. 
• 24 hours after removal of the drug the cells recover, this happens even at the highest dose and may help to explain why DD comes back so frequently when treated with  Xiaflex. 

Figure 4: I can't really follow this figure very well so rather than get it wrong and make mistakes I am going to leave this figure out but their key point from this seems to be that Xiaflex / Collagenase A induce membrane leakage and reduce cellular viability and metabolic activity in DD cells.

Figure 5: Here they are looking at the toxicity of the 2 different drugs and want to see which is more toxic to cells and if there is any specificity towards DD nodules and cords. 

• Xiaflex / Collagenase A both cause cells to die. 
• Collagenase A causes both necrosis (premature cell death) and apoptosis (programmed cell death) 
• Xiaflex only causes necrosis.

As far as I can tell from reading this (and correct me if I am wrong) they do not comment on whether this is a big deal or anything? But I think they say in the discussion that it may mean that there are likely to be viable DD cells and therefore there is an increased chance of disease recurrence. 

Figure 6: Here they are looking in the different types of cells at the levels of mRNA for key components in the production of collagen to see if this is altered by the presence of Xiaflex / Collagenase A. For those who don't know about the central dogma of life I have tried to outline it in the diagram below. But the key thing you need to know to understand these results are that mRNA is produced from DNA and that the levels of mRNA vary so that it can be used as an indicator of protein levels in the cell as protein is produced from mRNA. (Below image is VERY simplified)

The central dogma: DNA is where the information is stored and this is processed into RNA and then proteins. 

• They are looking in DD disease and see that  Xiaflex treatment causes a decrease in levels of collagen I and collagen III as well as fibronectin (forms part of ECM and interacts with collagen), alpha SMA and TGF-B1. If you remember from my previous post a decrease in TGFB1 would be useful. Explained in the image below. 

Central blue boxes show state in DD cells, right hand side is reported influence of Xiapex in DD cells

• They also say that levels of collagen are at their highest in the DD nodule which is exactly what you would expect. 

Figures 7 & 8: In figures 7 and 8 they are looking at the protein levels of Collagen I and III in the different cells types to see a) is there any difference in their profiles between the different sources (skin, fat, nodule and cord) and b) does Xiaflex / Collagenase A treatment cause any changes to these levels. 

• They show that the levels of Collagen I and III in the nodules are very high with Collagen III in particular very, very high (basically two times more than seen in anywhere else). 
• When looking at the effects of Xiaflex and Collagenase A they see that: 
• Collagenase A has an influence on Collagen I by causing a decrease on all samples at the highest dose only. 
•  Collagenase A only decreases Collagen III at the highest 2 doses in the nodules, cords and fat.
• Xiaflex causes a large decrease on all samples at all doses for both Collagen I & III with the largest decrease observed in the Nodules and cords.  

Figure 9: Here they are trying to show that the decreased levels of Collagen and other ECM factors was not just at the mRNA level but that they were also decreased at the protein level when DD tissue was treated with Xiaflex. 

• Xiaflex does down regulate the protein levels of fibronectin, Collagen and CTGF (and more) at  the protein level. 

Figure 10: I am just going to say that they see that Xiaflex and Collagenase causes a decrease in cell cycle markers. This makes sense as when the drug is added you see a slowing on cell growth and this means that the cell cycle is slower and therefore you should have a decrease in cell cycle related proteins (though in this case they are look at mRNA).

Right so that is all that I am going to cover for this paper, as I said it is a long post and it is very science based so here is the summary for all those who just want the key points or who are just too lazy to read it all (which is fair enough). 

Summary: 

• DD nodules and cords do show a faster growth rate.
• Xiaflex and collagenase A both decrease the growth rate in DD cells. 
• Xiaflex treatment causes a decrease in levels of collagen I and collagen III as well as fibronectin  and TGF-B1 (see the diagram as to why this might be good). 
• Levels of Collagen I and III in the DD nodules.

Reference:
Syed F, Thomas AN, Singh S, Kolluru V, Emeigh Hart SG, et al. (2012) In Vitro Study of Novel Collagenase (XIAFLEX®) on Dupuytren's Disease Fibroblasts Displays Unique Drug Related Properties. PLoS ONE 7(2): e31430. doi:10.1371/journal.pone.0031430

My review of: Dupuytren's Disease: Review of the Current Literature

As I have been rattling on about for a few days I have been meaning to get round to doing a post of a review I found for Dupuytren's contracture (DD) and so I am going to do that at least. If you are interested in this disease in particular then please do read the paper for yourselves there are bits that I am not going to cover because I personally am just not that interested in which finger is worst hit etc so there might be some details you are interested in that I miss. The paper is this one here:

Dupuytren's Disease: Review of the Current Literature
Khashan et al, 2011, The open Orthopaedics journal, 5, 283-288.

So some of the points that are of interest and come from the introduction are:

• DD is fairly common and depending on age, gender and ethnicity can occur is as much as 40% of the population but lower estimates are more like 2%. Still this is much more common that LD and it is unknown as to why this might be. 
• Interestingly they actually say that the most common locations globally are the UK, USA and Australia and which 3 places do you think that I get most of my hits from? UK, USA and somewhere else and to be honest this is likely due to the language spoken. 
• Men are more likely to get the disease than women by ask much as 9:1 and consistent with what I have posted about before you are also much more likely to get this disease once you are above 40 years old. 

  They then move on to looking at some of the causes of the disease:

• Local Trauma - Say that there are studies that have both supported this and that have discredited this. I think that this probably means that in some causes there is local trauma that triggers the formation of the lumps and in other cases there is not this trauma and maybe it is genetic in these cases. Anyway I think other than giving me some papers to research for a future post on does trauma cause these disease I didn't learn anything new. 
• Genetics - They say that in cases where this disease is genetic is is autosomal dominant disease with variable penetrance. What this means is--- Autosomal - this means that it is not carried on one of the sex chromosomes but on one of the others. ----- Dominant - So we get one copy of each gene from each parent and if a disease is dominant then only one gene needs to be defective for you to present with the disease ----- variable penterance - This just means (as best I can tell) that despite being dominant it will not always appear for reasons unknown, 
• Occupation - There have been reports in the past the certain occupations can increase the likelihood of getting DD, they say that this is highly debatable and in my eyes is probably linked to the trauma aspect of the disease. Of you have a job that gives you an increased chance of having trauma to your hand then you have an increased chance of getting DD. 

Pathophysiology of DD: 

Here they say that there are 3 main phases to the disease. 

1. Proliferative stage: This is the stage where the cells go into overdrive and grow uncontrollably and this results in the formation of a nodule. 
2. Involution: They say that it is during this point that the cells rearrange along the stress lines of the diseased tissue and this is how cords being to form in DD patients. The cells are also producing collagen and smooth muscle actin which is a key player in regulating contraction of muscles. So you have the beginnings of contraction and also more collagen so more nodule formation. 
3. Residual Phase: Here, apparently, the nodules regress and leave behind a cord and it as at this point that contraction starts to become very severe and much more visible. 

They do say a bit about the presentation of the disease and indeed the operative treatments but as this is less of an option for Ledderhose disease I am going to stick more to looking at the non-operative treatments. 

• Many different things including: Vitamin E, splinting and other have proved to be ineffective.
• Steroid injections (as I have discussed for Ledderhose before) have been shown to only have limited success which is much the same as what I would say. 
• They say that radiation has been used with some success when used early on and that the same is true of Verapmil.
• They also talk about some other collegenase injections which they are hopeful about for use as a future treatment.

I think I have covered this quite well and think that only other bit of information from the paper that I would like to include is that that this disease is mainly bilateral which is different from Ledderhose where the odds of it being bilateral are (I think) below 50%).  

Interesting things to post about

I hope to do 2 posts today, this one and the one I promised on Thursday about the Dupuytren’s review. This post is going to be a bit about the kind of research that I have been looking for and failing majorly over the last few weeks. But first (very quickly) for anyone that is interested in Collagenase injections please look at this open publication about it which I hope to cover tomorrow but it is very big and scientific so might take some time for me to read and be able to explain.

See the paper here 

Anyway onto some failed research….

1) How do Plantar fibroma’s naturally regress

So as far as I can tell there is very little information out there on how either DD or LD lumps naturally go away, this information would surely be invaluable. I mean imagine if research manages to find out that a group of changes within the lump or surrounding tissue cause it to go away as that same set of changes could then be induced in patients and woo it has gone away.

There are of course many major problems with this. I mean for starts you do not know who will and who won’t naturally regress and on top of that I think that from what I have heard it going away by itself is not all that common. Another major factor would be that not only would you need some tissue from before it regressing but you would also need to have a tissue sample from after the lump and gone. I don’t know about anyone else but I would have serious concerns that if they wanted to take some tissue after it has gone as it would likely trigger it to come back and there would be no way that I would want to take that risk.

2) How common is lack of flexibility of toes?

It is well documented that in Dupuytren’s you get a bending of the fingers but what happens in LD. I mean as I posted about the other day there have been some cases where the toes have bent but what I am more interested in is what I have where you are unable to properly bend your toes and I cannot find anything out there on it. This could be for several reasons, it could be because it is rare and so there are few cases of it documented or it could just be that few people notice it so it doesn’t get documented. This is not really something that can be researched but rather than something that needs to be documented and I am only really interested in it because I show this problem.

I think that is everything that I wanted to post about this morning, I hope to be back later with the DD review and then again tomorrow with the paper I have mentioned above.

Orthotics Video for Ledderhose

So today I am finally getting round to posting a video of me in the Orthotics. The key things that I am trying to show in this video is the angle of my foot landing, the Orthotics are of course trying to stop me from walking on the side of my foot as although this does divert weight away from the lump it causes many other problems and hopefully the Orthotics can also channel the pain away from the lump but in a more regulated fashion.

I hope that the video is as clear as this is in real life, certainly I think that the best comparison is between the running trainers (which were my main trainer as the other trainers shown are too painful to wear without the orthotics) and the trainers with the orthotics.

One thing that I am happy to see at the moment is not the number of hits on this blog but rather the length of time that some people visiting it are spending on here. I hope this doesn't put people off but I get a report from Google telling me roughly how long people are spending on this blog and the country where they are from so really it is not that much info. Yesterday however was a day where basically all the hits were under a second except one, one person spent over an hour looking at my blog, I am hoping this person is someone who has or someone who knows someone who has Ledderhose and they were on here for so long because they were finding information that was useful to them. The only thing that I have to say to people like that is please please please get in touch, e-mail me or leave a comment on any post you like (or those you don't with why not) or just the forum so that we can get as many people with as much information as possible together talking about this.

Plantar and palmar fibromatosis: Characteristic imaging features and role of MRI in clinical management.

So in this post I am looking at a relevant journal articles that I have been informed about over the last week whilst I was on honeymoon. I am slightly annoyed as it was really hard for me to gain access to this article and there are two more that I want to look at and either I cannot get them yet I am a likely to never be able to. Still I will do what I can from the abstract and see what happens from there.

Title: Plantar and palmar fibromatosis: Characteristic imaging features and role of MRI in clinical management.

Authors : Collette English, Robert Coughlan, John Carey and Diane Bergin.

Radiology Department and Rheumatology Department, Galway University Hospitals, Newcastle Road, Galway, Ireland. Correspondence to: Collette English E-mail: colletteenglish@gmail.com.

This article is a letter to the Journal Rheumatology and I shall try to just give an overview in as simple terms as possible what new things I have learnt from this. One thing I am going to note straight away is that they state that plantar fibromatosis (PF) is rare. They are looking at a single patient with bilaterial PF with a family history of Dupuytren’s disease (DD) and she was starting to show symptoms of DD. The DD was treated surgically but the PF was left alone as it was asymptomatic. They go on to say that they think that MRI is the best way to measure the extent of the lumps and that it should be used as a diagnostic aid. 

I guess that is it really, there is not a lot of useful information that I can get from that other than what I already knew.  

I will look at the others when I get the chance, for those interested I am intending to look at:

Fibroproliferative Disorders and Their Mechanobiology

and 

EXPRESSION PROFILING OF MATRIX METALLOPROTEINASES AND THEIR INHIBITORS IN DUPUYTREN'S DISEASE 

Wedding preperations

So today was quite a painful day. I do not think that this was because of yesterday when I was on my feet quite a lot but rather I think that this was because of the time that we had to spend on our feet at the wedding venue trying to decorate the place.

The decorations in the evening room was left down to me and I wasn’t sure what we wanted to do as we didn't really want to spend lots of money but at the same time I wanted them to look great, really great. It was actually my idea in the end and something that I have put a lot of effort into making look great. We have round the outside of the room lots of photos of me and my partner starting at opposite ends as babies and then meeting in the middle.  The completed effect is fantastic and it was about my best idea for the wedding and I cannot wait for tomorrow.

My foot is being really bad and I am hoping that tomorrow is ok, I am taking trainers to change into if I need to at the end of the photos as I am not sure how supportive the shoes are and they are not going to help my Ledderhose too much compared to the same things in my trainers. 

Getting painful feet for the wedding

I am not going to get cold feet and I am hoping not to get painful feet. 

I am slightly concerned today about my foot. The wedding is fast approaching, less than 80 hours to go now and I am not sure how good my foot is going to be. I am not sure how many other people with Ledderhose disease have this but my pain levels fluctuate quite a lot and I can sometimes make it to nearly the end of the day before I am having to sit down every couple of minutes and have to hobble round but other times it happens from the start of today and guess which is the case today.

Today is the last working day before the wedding and I didn’t even make it to 11am before I was in a lot of discomfort and I was trying out the pain pen. Can’t say I am seeing much difference with the pain pen at the moment but I am going to persist. I am not sure exactly what it does but I am not apply to use it too close to the site of the lump as this causes a sharp pain but it claims that it can help when applied as far as 10cm away from the source of the pain so I giving it a go and keeping my fingers crossed.

I am also thinking that the rest of today and the weekend might be a bit foot heavy. Tonight we are going out for a work meal which is in part for the wedding and partly for my partner leaving work. However there is no guarantee that we are going to be able to park closely to the place and so I might have to walk quite some way. Still fingers crossed that we can get close. Again there is this whole thing that because of my foot we are having to really think ahead and try to find somewhere to park when it should really not be a concern.  

Then we come on to tomorrow and I am getting up early to bake my layer of the wedding cake. I have got my stall in the kitchen and it is not a particularly intensive cake to make so hopefully I will be ok. Then we have the stag do. For this we are playing on the PS3 and then going out for a meal and bowling. The meal will be fine but we have a PlayStation Move and so many of the games for that require standing and I guess I am just going to have to learn to not be so competitive and sit out some of the time. The bowling I am most concerned about, shoes that are not running trainers and no orthotics. It is only going to be a couple of hours and I am going to be sitting for most of that so hopefully it will not be too much hassle.

Sunday, well Sunday again should actually for the most part be ok. The morning is mainly relaxing and chilling but then in the afternoon we are going to decorate the wedding venue. This requires standing on chairs and hanging up photos (I will try to post a picture of the finished effect here on Sunday evening). I am hoping that this doesn’t take too long but at the same time I want everything to be perfect and will not want to be too bossy or want to be too demanding on the other people that are helping.  

Monday is the big day and it is going to be fantastic whatever happens. Sorry to say that you can expect there to be too many updates in the coming weeks as I am of course busy but I hope to get something in here or there as I can’t let my many (1 or 2) regular readers down. 

Symptoms and risk factors of Ledderhose disease

My foot was not too bad today but it was far from great and far from what I would call acceptable level for daily pain but I can live with it. So on to the main part of the post today which is about....

Symptoms and Risk factors of Ledderhose Disease:  

The main symptom is of course the appearance of nodules in the medial and central part of the tendon in the base of the foot which is called the plantar fascia. The nodules or lumps are normally firm to touch and slowly progress in size. Over time the cords of the plantar fascia can thicken and it can lead to a restriction of toe movement. Normally once the nodule reaches a large enough size walking will become painful and this will also be caused by applying any pressure to the lump.

Official Symptoms:

My Symptoms:

I have referred to official things above but thought I would continue by saying what happened to me. So to start with when I was younger I noticed that I had a small and non-painful lump in the arch of my left foot and so left it alone. For many people it will stay like this and although they do have a plantar fibroma it remains asymptomatic and so it is best to just leave it alone as it will do more harm than good to poke the beast. [1]

Then a few years later I started showing what I would call signs of Ledderhose disease. So the lump started to increase in size I guess you could say that it went into a proliferative phase and the size of it that I could feel went from smaller than a pea to probably about an inch long in a couple of months. The increase in size was associated with an increase in pain and a trip to the doctor. From the fact that the pain was increasing with weight bearing and there was the lump his initial thoughts were that it was a Plantar Fibroma, he also thought that I may have plantar fasciitis due the fact that I had a lack of flexibility but also pain upon standing that wasn’t as bad as the pain that built up. I have also noticed that the plantar fascia has thickened, this is particularly bad around the lump and is what I think has led to my final symptom which is restricted movement in my toes on my left foot. See here

   

Risk Factors:

Having one of the related diseases - This may seem obvious by if you have either Dupuyten's (DD) or any of the other related diseases this is a sign that in all likelihood you are more likely to be predisposed to getting Ledderhose (LD) and in fact the other risk factors are mostly the same for both diseases. [1] It is thought that as many as nearly 30% of people with LD have DD whilst it may be as little as 2% of those with DD that have LD (though higher estimates do go up to 20%). [1] I do not have any of the related diseases.

Family History - It has been suggested that LD and DD are both genetic and that if you have family members with it then you are more likely to have the genetics that give you an increased risk [1]. I have seen many cases on-line where people have said something like "I was worried I would get it because my Mum had it" and there was also this recent article - Real People Interview [2]. Personally I have asked round all my family and nobody can remember anyone with either of these diseases and if that is correct then it goes back 4 generations and through many different branches which suggests this was not a factor for me.

Beta Blockers: There have been links to an increased risk for those who have been on beta blockers [1].

There have also been links made in the past which are as yet unproven to:

• alcoholism (I do not drink) 
• Smoking (I do not smoke) 
• Liver Disease (Fine as far as I am aware) 
• Thyroid problems (same as above)
• Maybe men at higher risk (I am a man) 

So as you can see there have been links to lots of different thing but nothing concrete is really there though there is some genetics in play in many cases but whether this is a requirement or not is unknown. As you can also see I do not really seem to be at a high risk but here I am sitting with a lump in my foot. 

References: 
 [1] Charles Eaten et al, 2012, Dupuytren's Disease and Related Hyperproliferative Disorders, Berlin, Springer publishing group.
[2] British Dupurytren's Society - http://dupuytrens-society.org.uk/RealPeople.html

Little Ledderhose Update

So today was a good day in many ways. For starters we avoided the snow that had covered much of the UK, we missed it by about fifty metres. This annoyingly meant that the better half had to cancel her lessons but we got to spend the whole day just chilling.


We decided to make the most of it and headed out for lunch. I knew that we were probably going to be walking for 15minutes each way and had the back up plan of getting the bus back. I was very surprised that actually I was ok not only going out but also for the most part coming back. To be honest at the moment it is being a bit weird about when it decides to hurt, sure it did hurt later in the day when I had to pop round the shop to get healthy cake ingredients and this did make me walk with a noticeable limp but also it is twinging more when I am sitting down at the moment rather than when I am standing up and my toes are feeling the strain at the moment. 


For people that don't come here often one of the problems that I and others with Ledderhose suffer from is a lack of ability to bend their toes and this causes pain of course because what do you do when you are walking? Today more so than recently this has been a source of pain, I am getting a lot of pain down hear my toes. 


Overall I cannot complain as I managed 15 minutes walking each way and although I am in pain and there is the toes problem it was a nice relaxing day and I used the foot spa this morning :-) 

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.

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.

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. 

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

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