Popular posts and pageviews

Was looking at a few of the stats from the blog the other day and it has now passed 350,000 page views which is pretty cool and I was interested to see where the majority of those page views have come from, in terms of which pages were getting viewed as this is a great indicator of what people are interested in. 

The most popular post by far is my original post that I have expanded over the years. It is just a share of my experience, this is why I love to add interviews when I can. This post also has a lot of interaction with over 100 comments which is great. 

Another great source of information is the doctors interview with Dr Spilken. The clinic is still running although now being run by someone her mentored. I am not sure why this interview is so popular but it is probably because there is very limited information on the net about cryotherapy / cryosurgery. Indeed it is one of the treatment options that I wish there was more information about, much like the injections that Dr Davis does, the treatment sounds great but I struggle to find significant scientific publications or patient experiences to back it up. I have had another look and put put another request for patient interviews but I am still unable to get more information out there on cryosurgery or the injections, if you have been treated by either of these or have any information then please do get in touch. 

In terms of posts on treatment options it is actually the page on orthotics that gets the most views. I don't have that much information on orthotics so I will be putting a few feelers out there to see if I can get any more information and details on how they can be of use in both relieving pain and correcting gait for Ledderhose patients. 

In completely random news we have also recently had another addition to our family which has been great fun, see below! 

Being careful

Although I am now in a really good place with my Ledderhose I still have to be careful. For those that aren't sure I am not "cured" for lack of a better word the condition is in remission. The pain has gone and I no longer need a walking stick, I am running and for the most part I don't think of the condition any more. 

There are however a couple of exceptions to this and they are more of an annoyance although also a constant reminder and something that makes me remember how important it is to help patients that are in the position I was a couple of years ago. 

1) Hitting the arch: The lump, although significantly smaller, is still there and direct impact on it can be painful. For example I was walking down the stairs the other day and I stepped over the baby gate and slightly misjudged my step and this resulted in me bashing my arch on the bottom step. This bashing was incredibly painful and significantly more that had I done the same thing on the other foot. Of course I could wear trainers all the time but with the little one running around I would rather not risk treading on her toes. 

2) The orthotics: Buying new shoes is a real pain I have wide feet and the orthotics are obviously wide to cater for that but also they add depth so I have to get shoes that have the height to fit my feet (which are also fairly tall, think brick shape) and the orthotics. 

3) I am still wearing the orthotics. Not sure if I could get away without them and is something I am considering trying as I have so little pain at the moment. The aim of the orthotics now is to try and get me to walk normally rather than on the outside of my foot as my body learnt to do that whilst the foot was bad. 

Don't get me wrong I am not complaining however there are still things that need to be catered for.   

A little update on how what has happened since I last posted:

Well for regular visitors I would like to ask a favour, particularly if you are in the UK and a Ledderhose patient or if you are a Dupuytren's patient worldwide.

 Dr Chris Bainbridge, a specialist in the UK, who has done work with Xiapex amongst other things has contacted me directly and told me that he is currently running a survey for Dupuytren's patients which you can find here: https://www.surveymonkey.com/s/Dupuytrens_disability_survey

Please fill this out as who knows something useful might come from this.

He is also considering looking into the application of Xiapex in the treatment of Ledderhose disease, this is something that I am not aware of having been tried before but was something that I was looking at back when I was considering my options.  I came to the conclusion that although it might be useful it is not something I want to try because reports suggest that the treatment should work better on the cord than a lump and with Ledderhose the lump is the main problem and with Dupuytren's treatment there has been feedback that there is often swelling and I doubt this would be nice in the foot.

Now I know I have not really sold it but if this is something that you would be interested in then please either get in contact with Chris Bainbridge who needs enough interested parties before considering it or you can contact me and I will pass you name and contact details on to him.  

I have also played a much harder game of badminton and although the foot itself did not hurt too much there were consequences of me playing again. The main problem with my play was that I was finding moving around the court harder and not because of pain but as it turns out because I was shifting my weight onto my right leg this of course is still an instinct from having been in so much pain. I still won but I have had a lot of pain in my right leg for the two days since playing. Hopefully a new pair of orthotics and a new pair of trainers and I will be well on my way to full recover. 

2 days until a year since my first post. 

No Phyio? DIY walking repair

Shorter post today on my trip to the doctors this morning. I went to see the GP to get referred for physiotherapy as although my foot has not been hurting I have been struggling to walk due to other pains cropping up where I have become dependent on the stick. The Dr told me that it will likely take at least  3 months for me to get an appointment to have physio so my best bet for now is to try and lean myself off of the stick and to try and walk further and further without it without have the issues mentioned above. 

I am still preparing for a gentle return to badminton and today I got some new badminton trainers, well actually they are squash trainers but from what I have read on the internet the difference is not all that great and I was happy to get them for the price I did as the badminton ones were at least double the price. The reason though that I did not get the badminton specific ones is because none of them were wide enough to fit my orthotics inside. 

I will wear them with light socks when I go outside so as not to scare everyone away.

Ledderhose Video Post

Having seen several things saying that videos are cool I thought that it would not be too hard for me to make one myself that is more informative than me walking or trying to bend me toes. So my first effort is below, sorry for all the Ums that is something I tend to do when talking to myself.

So this video is briefly about my experience with Ledderhose disease / plantar fibromatosis or whatever you want to call it which is then followed up by me talking a little bit about some of the treatment options for Ledderhose, not in as much details as I have on their individual posts but perhaps I will get round to that.

An interview with myself, Ledderhose patient

Ok so I thought I am asking all of these patients to do an interview for me why don't I do the same thing and interview myself, please if you have any questions then add them as I would like to help out as many people as possible. I have done this in part because the story that I have posted about my Ledderhose is very long and some people might find this easier to digest. 

1) How long have you had Ledderhose disease?

Growing up I was sure I had a little bump in the arch of my foot but there was no pain, no growth and nothing to be concerned about, then two and a half years ago out of nowhere it started to grow and started to become really painful, the pain has gradually started to increase more in the past few months and this has coincided with a further increase in the lump.

2)  Do you have a family history of Ledderhose disease? Do you have any of the increased risk factors?

I do not have a family history of this disease and I have asked as far back as my grandparents who do not know of anyone in my family suffering from this disease. Of the risk factors I am aware of I am not at risk at all, I do not smoke or drink and I do not have diabetes or epilepsy. See my family tree below for all the evidence you need that I don't have a family history.

3)  What treatments have you had so far? How did you find them and did they help?

I have had a steroid injection and I have orthoitcs. I had been told that I would require local anaesthetic otherwise the injection would be incredibly painful, well the local was really really painful but the steroid injection just felt like some liquid surrounding the lump. I was told to avoid sport for a few weeks but otherwise I should be ok. Post injection I would recommend staying off of your feet for a few days if possible as it is very painful after the numbness caused by the local goes away. I think this helped me for a few months but it was fairly ineffective as it still hurt but not as much and it didn't last.

As I said I have also been given custom made orthotics, these helped for a couple of weeks but this coincided with me being off of my feet more so again it is hard to tell.

Update 27-08-2012 - I have now had radiotherapy and so far so good. 

4) What do you consider your next step and why?

I think that the next step for me is radiotherapy, it has had good results and I want to avoid surgery as many people have become much worse post surgery and as far as I can tell radiotherapy is at the very least a good pre-surgery measure and is worth trying if you can get it. At the moment I am most likely going to get this done in the UK because I do not have much money and this seems to be the cheaper option although the main guy in Germany probably does have more experience. 

Update 27-08-2012 - My family and friends worked together to raise the money for me to get radiotherapy. My condition is improving and hopefully I will be back to normal by the start of next year. 

5) What other options have you come across? 

As I said I don't think of surgery as an option. Other things out there do include collagenase injections. At the moment these are aimed mostly at Dupuytren's as they are designed to attack the collagen type in the cords rather than the nodules and in Ledderhose the main disease tissue is nodules. Other than that I have not seen much out there though I have heard of people having cryosurgery, NAC treatment, chemotherapy and a couple of other little things. 

 6) What is the worst pain that you have experienced with this disease? Have you found anything that helps?

I have once had it so bad that I was not able to walk from the bedroom to the bathroom without crying because of the pain, at the moment this has only happened once and I hope it stays that way. As for things that helped, I have been given Co-codamol which does help somewhat with the pain but makes me very tired and sleepy so it is not really an option I can use at work and so far no other pain killers including dicofenac and the standard ones have helped. I have also found that heat helps a little or at least takes my mind off of it so I have a water spa which is therapeutic even if the pain relief it offers only last for the 20minutes I keep my feet in there. I have also got some microwave slippers, these also help a little but my feet get very hot in them and I can't use them for too long. I have also found that taking weight off of my feet helps, I know some find exercise helps (or at least doesn't hinder) but this is not the case for me so I also have a walking stick to try and take the pressure off of my foot when it gets bad. 

I have also found that talking about it and letting others know what you are going through helps as they might offer to do things to help keep you off of your feet and if you can help raise awareness then we might increase the likelihood of something being done.   

Finally a picture of my ledderhose. It doesn't look like much and I have seen worse. 

 

An updated Ledderhose story

I thought that it was about time that I updated my story, so here is the whole story, the old stuff is in blue and the new stuff is at the end in black. I have removed some of the details that were in the original post about the science and things as I have now covered that in much more details. For the original post see here.


Plantar Fibroma and my experience: 


This is a relatively unknown disease that can be painful and debilitating; here I am going to tell you my story and as yet unsuccessful attempts to alleviate the problem. 


Growing up I was sure I had a little bump in the arch of my foot but there was no pain, no growth and nothing to be concerned about, then two years ago out of nowhere like the little menace that it is it started to grow and started to become really painful. I headed off to the doctors as it was starting to interrupt with my daily life and this was not good enough. My GP has a look at the lump and annoyingly decided that it needed to be prodded which of course just made it more painful, he then informed me of what I already expected that it was probably a plantar fibroma. A plantar fibroma is a benign tumour that forms in the arch of your foot. I think a good way of thinking of it is basically that you have a marble stuck in the middle of the arch of your foot and it is like stepping on that all day. 


Being a research scientist I was intrigued to see what I could find out about this nasty little thing, so I did some online searches using both just Google but also Pubmed to look for research articles on the condition. Now this was a few years ago so I can't remember all of the details but basically I found that Physio can't help, surgery can't help as it just grows back most of the time, steroid injections might help but might make it worse and that there are several other types of treatment but that are not available in the UK. So after my research I was quite surprised when the doctor referred me for Physio.... I waited for an appointment and then I waited some more, I was in so much pain that I decided, as my parents said they'd pay, for me to go to a private Physio. I went along and explained what I had, she was very experienced and very helpful, but said that in all of her years she had only come across one other case and that there is no known way for physio to help the condition. Being skint I needed to see the NHS physio before being put through to the foot specialist, luckily I got one pretty quickly after the above as I said I was happy to see a student physio, they told me the same thing as the private one and sent me on my way. I did learn from the private physio that it would be best to invest in a good pair of running trainers and wear them all the time and this did help decrease the pain to some degree. 


I was getting pretty stressed at this point, my foot was killing me, there wasn't and if I am honest still isn't really a step in the day where I don't feel it, and many times I can just be lying in bed and it will twinge and I'll be in a lot of pain for 30 seconds or so. Anyway I was finally going to see the foot specialist to get answers. I went along and they said pretty much what I already knew, if I was to have surgery (let's face it if you hear tumour you do think surgery) the chances of it growing back are very very high and in all likelihood it is going to come back faster and harder and meaner and it really is a last resort, they were nice however and said that maybe at this point the best option would be to try an ultrasound guided steroid injection into the fibroma. 


A few months later with little progress in any way I was lying on a bed waiting for the injection, I had been told that I would require local anaesthetic otherwise the injection would be incredibly painful, well the local was really really painful but the steroid injection just felt like some liquid surrounding the lump. I was told to avoid sport for a few weeks but otherwise I should be ok, well I stupidly decided to head off to the lab, not realising that I was only pain free because of the local, a few hours later that wore off and I was in a lot of pain and couldn't walk and had to be picked up and taken home. 


Around the same time as this I started to do a lot of cycling, with my weight being a potential issue and pretty much any other form of exercise out of the question due to the foot pain and it was working I began to lose weight. Now whether it was the weight loss or whether it was the steroid injection that helped I don't know but over the coming months the pain began to subside, I was able to thrash everyone at badminton again but still in the knowledge that the lump was there it was just more in the background. 


Things were good for nearly a year and then it all started again, I started to get increasing pain in my foot, increasing twinges and more and more depressed about it. A few things had changed over that year, I was no longer living with my parents but was living with my fiancé, whilst this is of course amazing it does mean I don't really have easy access to cycling and it turned out I had to be rereferred to the specialist as I had been discharged, then my referral wasn't received and I have an appointment in December. 


The pain now is at a point where I can't give a 20minute presentation without requiring a seat, not only that but the condition has progressed to the point where if I have had a busy day on my feet I cannot bend the toes on my left foot up as the tendon in the bottom of my foot where the lump is located becomes too tight. 


The problem with this thing is that I now don't walk properly, my foot is twisted so that I walk on the outside of my foot to stop weight from going through the lump, whilst this is a good thing it causes other pains as this is not how we evolved to walk. I think as a result of this and increased weight bearing on the other leg I now have Achilles tendonopathy (or tendonitis depending on who you see) which means I now have problems in both legs, luckily the Physio can help with the ankle and it seems to be working (but that's another story). 

Right so onto the new stuff. So not that long after I made the above I made the trip back to the specialist and whilst the appointment was not that great as the guy was very unhelpful and was even suggesting that I may have something different I was then sent for both an MRI to confirm the diagnosis and also for orthotics to see if they could help my condition. 

So firstly onto the orthotics. The appointment for this was really good and the guy seemed to know what he was talking about and I had all the prep done and they were sent off to be made. I was quite optimistic about these for several reasons. The signs were good as the best trainers for me were the ones with most support which prior to getting the Orthotics were running trainers. The running trainers are great but they are not warm in the winter, not dry in the winter and are very expensive when you are wearing them all day every day. The orthotics arrived and I instantly took to them, I was ill with the flu at the time so managed to wear them in gradually although still quicker than recommended. At first these seemed to help but also coincided with me spending less time and with my wedding and honeymoon which of course was the most wonderful and relaxing 2 weeks of my life. 

In the few weeks since I have been back from the honeymoon the foot pain has intensified and I am starting to reach the edge of my limit and I either have to choose to have an unproductive day and risk not finishing my PhD or have a productive day and be in pain that I am not going to be able to cope with for the remainder and this is kind of the dilemma I find myself in at the moment. 

Right though back to the MRI. Not much to say about the MRI. The actual process was very simple and easy, I went along and stuck my foot in a machine and then waited a couple of weeks for an appointment to discuss it with the foot specialist. This appointment was much more successful that the first but was with the boss rather than one of the not so clever people. The man had lots of interesting points but was told that until I basically cannot walk that surgery is not an option but it remains my only option. But the MRI did confirm that it was Ledderhose disease so at least we knew what we were tackling. 

In the past 6 months or so since I made this post lots has happened and not just me getting married and my foot getting worse. I am also much more open about my foot with lots of people and I am getting lots more support from my wife, my family, my in-laws and my friends (you all know who you are). This has led to me seeking new ideas and new hope as to where I should go next. 

For starts I now have a foot spa and heated slippers which help ease the pain for a short time but that is better than nothing. I have a stall for the kitchen which helps me keep up with the house work and a walking stick for when it gets really bad. All these things help but do not take away the immense pain that I feel in my foot. This pain sometimes comes first thing and is normally present by midday and always there by 3pm and is really excruciating at the moment. 

I no longer feel that I am a one lump person. I am getting a lot of pain down near my toes on my left foot and I am worried that there maybe a lump at the base of my second toe as this area in particular is very tender to the touch. I also think I am developing the same problem in my right foot, I have started to get the occasional pain that I got when it all started in my right foot and am worried that it is now bilateral. 

This has led to me looking into lots of different treatment options and there are others out there that are not on the NHS. I am currently looking in radiotherapy as my next choice as I have interviewed several patients that have had success with this option and also have been looking at Xiapex which appears to be coming to the UK (in Devon for Dupuytren's at least). 

So I guess at the moment I am in a job that makes my foot very painful as there is lots of standing and I am in a place where my next treatment is either going to have to be costly due to the NHS not providing it or surgery which I have been told to avoid by so many people I hardly consider it an option.

Things that help me with Ledderhose

A sense of inadequacy today!

 For one thing I was chatting with my wife about what she had been doing whilst at was at work and she was between driving lessons and she said she had been ironing the chair sashes from the wedding that we had just sold and was quite frustrated that she had only got about half of them done and was tired. I said that I was more than happy to do some this evening but she said there was no way she would let me stand and do the ironing and even though I have my stall I am still not really in a great position to be able to do that and I had to concede her point (I will come back to the stall in a bit).

The second thing that then happened was everyone at work was talking about this fun run that they are going to do and another person had e-mailed about the one they were doing and I find this so annoying as I would love to be able to run, to walk even a couple of miles and to be able to raise lots of money for charity but let’s face it again that there is no way that I can do that either.  Still I need to pick my battles and there is no point in me getting down about not being able to do the ironing (it hardly ever needs doing anyway) and not being able to go for a run as that is something that just shouldn’t concern me and in fact I am happy the others in the lab are going to do it and are hopefully going to raise some money for some good causes.  Wouldn’t it be nice if one of those causes could be something related to some research for Ledderhose disease?

There are many thing and now many posts that I have made about the different things that I use to help me get through the day so I thought it would be good to stick them all somewhere where they are together so that it is easier for people to find:

Stall: So I have a stall in the kitchen that when my foot is particularly bad I use for the washing and drying up. 

Foot Spa: See my comments here but basically it is a nice warm massage for my feet. 

Snuggle Toes: See here for the warm slippers that help me to get to sleep. 

Walking Stick: New addition that I am trying to take the weight off of my feet. 

Orthotics: Take the weight around the lump and offer much better support than anything else. See here. 

Wonderful Wife and supportive family: There is nothing like having people that will put up with you moaning about it and give helpful suggestions and great advice. Thanks everyone 

  

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.

Wedding and honeymoon update with Ledderhose

A round up of my foot over the last couple of weeks:

So as regular readers will know I have not been around for the last couple of weeks because I got married on Monday 13^th February 2012 to my wonderful and brilliant partner. I was apprehensive about how my foot would cope with the demands of the wedding day and the expectations that are placed on the wedding couple. I am happy to say that the day was a wonderful success and everyone who I have spoken to has had a fantastic time and my Ledderhose did not get in the way. I was wearing my amazing orthotics that so far have done a great job of easing my pain.

So on the day I was up and down a lot and standing around for photos and then of course for my ten minute speech and the first dance, as well as not being able to let down one of the little girls I had a dance round the dance floor with her. I did have some side effects the next day but it was not as bad as I was expecting and I have basically spent the last week sitting in the sun so I can have no complaints there.

My plans for now are to get a few more posts on here about the science side of things and I have a few e-mail alerts from when I was away about Ledderhose and Dupuytren's so I look forward to seeing if they are any good. 

My Plantar Fibroma / Ledderhose TImeline

Below I have put a timeline of how things have gone for me so far. There maybe typos and some of the dates maybe slightly off but I have tried to be accurate. 

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.

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. 

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.