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Newly Diagnosed
 1 2
02/01/11 21:21
marjorieb 
Newly Diagnosed

Hi Everyone,

I am new to this whole thing. Never posted on ANY Forum on the web. Just got diagnosed with 'plantar fibromatosis', both feet on 1/28/11. Saw a pt. personal story which stated this was a separate entity from Ledderhose. My MD just called it 'Dupuytren's in your feet'. He knew I would completely understand. I worked many years as a hand therapist and have treated many people following Dupuytren's release.
So far, I was sent to New Balance for shoes and inserts; told to call for orthotic orders if I could not walk in the New Balance shoes.
The pain is pretty hard to take, and I find that the only thing worse than staying on my feet is resting and then getting back up. OUCH! Mornings are the worst.
Then, I got up on 1/30 after a very sleepless night due to pain in hands and feet. I have cords in my hands, but can barely feel any nodules. There is triggering of my fingers, but minimal. I have never known a Dupuytren patient (from hand therapy days) to have pain from the diseaase, or to have cords prior to nodules.
I'm really confused by this rapid progression and high level of pain.
Has anyone had a similar experience? Doesn anyone have advice?

Edited 02/01/11 21:31

02/02/11 00:04
David26

not registered

Re: Newly Diagnosed

Welcome to the board. Pain is not uncommon but the literature will tell you most don't have pain with DD. I think there is more pain with Ledderhose. Typically it is the nodules that are painful. I have tender and painful nodules in my hands, at least three in the L hand and one in the R. The cords are not really painful. It's my opinion that aggressive DD in the hands is more likely to be painful, involve both hands, involve more areas, and is more likely to involve the feet. I don't have LD in my feet yet and hope to avoid it. We'll see. I'm 59 and my DD in the hands showed up about 10 months ago. I've read that early nodule pain can sometimes resolve as the disease progresses. The downside to that usually mean contracture is underway.

Read the board. Go back as far as you can. You will learn a lot about options such as radiation, needle release surgery and Xiaflex.

02/02/11 00:26
spanishbuddha 

Administrator

Re: Newly Diagnosed

I have early stage DD in one hand and have some minor pain, more like an ache or soreness. It sure hurts if I hit or catch the palm on something like a door handle.

I also have plantar fasciitus in one foot, no lumps or nodules so hopefully so far it's not LD, and like you it's very sore standing up after rest, and would be in the morning if I didn't wear a night splint. I can't find comfortable shoes and by the end of the day it hurts if I've been mostly on my feet. Bought 5 pairs of shoes last year, no good, converted some tennis trainers to a day shoe, no good, tried orthotics, no good. The search goes on, finances willing.

Based on your post I would recommend a hand and foot specialist gives you an accurate or more definitive diagnosis, and proposes a course of (non-surgical) treatment.

02/02/11 02:31
marjorieb 
Re: Newly Diagnosed

Thanks David26 and spanishbuddha.
David26, have you tried any of those treatments? I was reading about Xiaflex side effects. I just don't know about risking tendon rupture. On the other hand, I really hate to give up skiing and Rocky Mountain hiking.
Spanishbuddha, I did see a foot specialist. It's possible he didn't spend a lot of time talking about the disease, because he knows my background as a Certified Hand Therapist. I worked with his group of MD's. I'm thinking I need to give his office a call and see if I can go back and discuss my concerns.
Have you tried UNstructured shoes, by Clark's? Right now, those and my Merrell sandals feel better than the custom inserts from New Balance.
I know what you mean about the finances. I spent more on shoes, last weekend, than I usually do in six months.

02/02/11 04:22
Cyclist 

Re: Newly Diagnosed

marjorieb:
Hi Everyone,

I am new to this whole thing. Never posted on ANY Forum on the web. Just got diagnosed with 'plantar fibromatosis', both feet on 1/28/11. Saw a pt. personal story which stated this was a separate entity from Ledderhose. My MD just called it 'Dupuytren's in your feet'. He knew I would completely understand. I worked many years as a hand therapist and have treated many people following Dupuytren's release.
So far, I was sent to New Balance for shoes and inserts; told to call for orthotic orders if I could not walk in the New Balance shoes.
The pain is pretty hard to take, and I find that the only thing worse than staying on my feet is resting and then getting back up. OUCH! Mornings are the worst.
Then, I got up on 1/30 after a very sleepless night due to pain in hands and feet. I have cords in my hands, but can barely feel any nodules. There is triggering of my fingers, but minimal. I have never known a Dupuytren patient (from hand therapy days) to have pain from the diseaase, or to have cords prior to nodules.
I'm really confused by this rapid progression and high level of pain.
Has anyone had a similar experience? Doesn anyone have advice?

Hi Marjorieb

I had a brief painful period when my condition first became symptomatic in Dec 2010, that only lasted a few weeks before settling down when I learned to manage the condition.

These days 'normal' mostly involves minor discomfort around the nodules during the day and at night sometimes a bit of minor pain in the nodules or feet feel like I've walked more than I actually have. At first, I used to do too much and then not notice this until I stopped and put my feet up. They would then feel even worse until the next day, so it felt at first like rest was a bad thing. This passed when I realised how to manage the condition better throughout the day.

Try putting your feet up during at lunch and on 2 bed pillows at night if they're really achey and get plenty of rest until the pain clears. Shoes with stiff soles and soft inside are good as are thick cushioned socks. Sitting and standing for long periods, stretching the plantar tendon and the wrong orthotics are not recommended.

Try a few things out and give it a few weeks and hopefully like me, you will find the pain becomes more bearable

I wish you all the best while your are figuring it all out and hope you don't get too down about it
Di

Edited 02/02/11 04:28

02/02/11 09:24
wach 

Administrator

Re: Newly Diagnosed

You should be aware that teh FDA approved Xiaflex only for Dupuytren's disease, not for Ledderhose, and that there is no trial for Ledderhose either. Maybe some day someone might try an off-label use for Ledderhose but that would be experimental. Outcome and risks are unclear.

The pages on the above menu give a good overview about disease and treatment options.

Wolfgang

David26:
... Read the board. Go back as far as you can. You will learn a lot about options such as radiation, needle release surgery and Xiaflex.

02/02/11 14:35
spanishbuddha 

Administrator

Re: Newly Diagnosed

marjorieb:
Thanks David26 and spanishbuddha.
David26, have you tried any of those treatments? I was reading about Xiaflex side effects. I just don't know about risking tendon rupture. On the other hand, I really hate to give up skiing and Rocky Mountain hiking.
Spanishbuddha, I did see a foot specialist. It's possible he didn't spend a lot of time talking about the disease, because he knows my background as a Certified Hand Therapist. I worked with his group of MD's. I'm thinking I need to give his office a call and see if I can go back and discuss my concerns.
Have you tried UNstructured shoes, by Clark's? Right now, those and my Merrell sandals feel better than the custom inserts from New Balance.
I know what you mean about the finances. I spent more on shoes, last weekend, than I usually do in six months.

Thanks for the tip about the shoes, I will see if I can find some locally to try.

Interesting to hear about the sandals.

I use Fitflop sandals at home and they're the only thing that means my feet don't hurt. Last summer was bliss. So I bought a Fitflop shoe in anticipation. They're quite expensive. But not the same footsole at all as the sandal, so that was money down the drain. Oh well, summer's coming in the north, well, soon ....

02/02/11 18:48
marjorieb 
Re: Newly Diagnosed

Interesting about FitFlops. I was told to stay away from the exercise shoes, which 'unbalance your foot' in order to work your legs. I haven't tried them. I think they might put too much pressure on the nodules.
If they are working for you, New Balance also has a version. The Aravon line from New Balance has really great cushioning and support.

02/08/11 18:28
Soonerfan 
Re: Newly Diagnosed

marjorieb:
Interesting about FitFlops. I was told to stay away from the exercise shoes, which 'unbalance your foot' in order to work your legs. I haven't tried them. I think they might put too much pressure on the nodules.
If they are working for you, New Balance also has a version. The Aravon line from New Balance has really great cushioning and support.
I have ledddhose in both feet and duputrens in both hands. They say it doesn't hurt, but my hands ache most of the time, especially after working on the computer all day. I have had the best luck with Asics shoes, don't know why but they hurt my feet the least. Tried orthodics in my shoes, too much pain from them, I agree for some reason Socks at all times and shoes, can't do barefoot at all. Looks silly at home to be in my PJ's in the evening and have my socks and tennis shoes on. Just had RT on my hands and 1 foot, already had surgery on one foot and they took out the tendon...do not let them do this..nothing but trouble and pain since then.

02/08/11 19:08
Cyclist 

Re: Newly Diagnosed

Hi Soonerfan
Good to hear that someone else has had success with a combination of socks and Asics shoes. FYI - there's a few more posts about favourite socks and shoes in the Everyday Management thread. I look funny in my socks in thongs with shorts and singlet in our Australian summer, but I don't care because it works for me!
I have a theory about keeping the circulation going, as exercise seems to make the nodules feel better (ironically), so long as I don't overdo it. Also putting feet up seems to have a similar effect when sore. More in the Everyday thread and What Works thread on this also.
Take care
Di

Edited 02/08/11 19:13

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