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Twitchy/Achy Feet at Night/Ledderhose
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12/02/10 06:22
flojo 
12/02/10 06:22
flojo 
Re: Twitchy/Achy Feet at Night/Ledderhose

Sentinella, You are tough! Keep it up!

12/31/10 04:11
Cyclist 
12/31/10 04:11
Cyclist 

Re: Twitchy/Achy Feet at Night/Ledderhose

Sentinella:
I have had twitchy feet at night for about 10 years. Sometimes so bad I can't sleep or I wake my wife up because my feet and legs violently jerk for no reason.

The nodules in my feet don't hurt as often, only 3 or 4 times a day I get sharp pains that last 5 minutes or so. A huge improvement.

Just curious if anyone else had this symptom? I also have another weird anomaly, I can't sleep with covers over my feet. Even on cold nights camping when it is 20 degrees outside. My feet get very hot and feel like they are burning up.

Terry Sentinella

Hi Sentinella
Have you heard of 'restless leg syndrome'? Sleep physicians are researching into this area which has similar symptoms of jerky feet and legs.

I also get those sharp pains you describe - they kind of feel like electric shocks that I feel radiating out of my feet and almost through my whole leg.

I have only just started experiencing the pain associated with LD in the last few weeks, but the ball of my feet get a pain that your 'nervy' pain appropriately describes. I also feel a pulling sensation along the tendons and a burning sensation around the middle of my feet. I'm having trouble with temperature control because although my feet feel cold to touch, they feel like they're burning. This is all worst at night and I never know whether to cover my feet or not, especially since it's currently the middle of summer in Sydney!

It's so good to hear that RT helped and that you are maintaining your active lifestyle

Di

01/06/11 01:42
Sentinella 
01/06/11 01:42
Sentinella 
Re: Twitchy/Achy Feet at Night/Ledderhose

Yes I have heard of Restless Leg Syndrome (RLS). I figured I had it until I found out I have Ledderhose. Since the radiation treatments my feet don't twitch very much at night. I wonder if the two are connected?? I know there is medication for RLS but I really am against taking any medication, unless it is a necessity. My twitching feet was bothersome at times but not enough for me to resort to taking a daily pill. One thing that did help me was taking Succeed (Electrolyte capsule) a few times a week and during endurance events.

News on my Dup's and Ledderhose. The nodule in my left hand looks like it's the same, maybe a little smaller, but not much. The cord that had started to develop is gone. The nodules in my feet have shrunk in 1/2 and I don't even notice they are there. My feet and hands do not ache at all. I think the disease has stopped progressing for the meantime. I had my final treatment at the beginning on October 2010, so it has been 3 months.

Even better, one of the Radiation Technologists that did my treatments is now running with my running group, and she ran in the last 2 running events I put on. Kind of cool though all of this I have meet some very cool people and new friends.

01/07/11 03:47
flojo 
01/07/11 03:47
flojo 
Re: Twitchy/Achy Feet at Night/Ledderhose

Yep! The new friends as a result of this disease is true! Really, really nice, caring, compassionate people who understand this weird disease. That helps as we muddle through our decisions.

Again and again, thanks, Wolfgang, for this wonderful site.

01/07/11 11:48
Cyclist 
01/07/11 11:48
Cyclist 

Re: Twitchy/Achy Feet at Night/Ledderhose

Agreed - thanks Wolfgang

01/07/11 16:59
Sentinella 
01/07/11 16:59
Sentinella 
Re: Twitchy/Achy Feet at Night/Ledderhose

I agree as well, Thanks Wolfgang.
Terry

01/07/11 17:32
wach 

Administrator

01/07/11 17:32
wach 

Administrator

Re: Twitchy/Achy Feet at Night/Ledderhose

Hey, not a big deal, it's your site. And the thanks go to Dupuytren Society.
Thank you, you are most welcome!

Wolfgang

01/08/11 05:20
Cyclist 
01/08/11 05:20
Cyclist 

Re: Twitchy/Achy Feet at Night/Ledderhose

Sentinella:
Yes I have heard of Restless Leg Syndrome (RLS). I figured I had it until I found out I have Ledderhose. Since the radiation treatments my feet don't twitch very much at night. I wonder if the two are connected?? I know there is medication for RLS but I really am against taking any medication, unless it is a necessity. My twitching feet was bothersome at times but not enough for me to resort to taking a daily pill. One thing that did help me was taking Succeed (Electrolyte capsule) a few times a week and during endurance events.

News on my Dup's and Ledderhose. The nodule in my left hand looks like it's the same, maybe a little smaller, but not much. The cord that had started to develop is gone. The nodules in my feet have shrunk in 1/2 and I don't even notice they are there. My feet and hands do not ache at all. I think the disease has stopped progressing for the meantime. I had my final treatment at the beginning on October 2010, so it has been 3 months.

Even better, one of the Radiation Technologists that did my treatments is now running with my running group, and she ran in the last 2 running events I put on. Kind of cool though all of this I have meet some very cool people and new friends.

Hi Sentinella
That's good that your RT has helped with the symptoms - what great news! It gives all of us considering RT more hope. What a bonus to have met some cool people

Di

02/25/11 21:48
Sentinella 
02/25/11 21:48
Sentinella 
Re: Twitchy/Achy Feet at Night/Ledderhose

Update on my Ledderhose and Dupuytrens, the nodules in my feet are almost 100% gone. I finished my radiation in early October of 2010, so 5.5 months ago. I really didn't stay off my feet during the treatments, but I did slow down my running for a month or so. Thanksgiving weekend I ran 2 50k's and a marathon in 3 days to kick start my training. My feet have been getting better and better all the time even with a demanding running schedule. So YES radiation works, and for me it didn't matter if I took it easy on my feet.

I applied for the Badwater 135 Ultramarathon a few weeks ago, and they accepted my application, so I will be a competitor in the Badwater 135 Ultramarathon held on 7/11/2011. This has been a long term goal for several years. To be able to qualify, and then have them select me is just amazing. Now for the planning and training.

Thanks for all the advise I received on this forum. It helped me out so much to read and learn from all of you. Last year my feet ached all the time, at the end of my 100 milers they killed me. To have the pain and achy feeling gone is a gift. You all are awesome.
Terry Sentinella

02/25/11 22:20
Chobe2 
02/25/11 22:20
Chobe2 
Re: Twitchy/Achy Feet at Night/Ledderhose

Sentinella:
Update on my Ledderhose and Dupuytrens, the nodules in my feet are almost 100% gone. I finished my radiation in early October of 2010, so 5.5 months ago. I really didn't stay off my feet during the treatments, but I did slow down my running for a month or so. Thanksgiving weekend I ran 2 50k's and a marathon in 3 days to kick start my training. My feet have been getting better and better all the time even with a demanding running schedule. So YES radiation works, and for me it didn't matter if I took it easy on my feet.

I applied for the Badwater 135 Ultramarathon a few weeks ago, and they accepted my application, so I will be a competitor in the Badwater 135 Ultramarathon held on 7/11/2011. This has been a long term goal for several years. To be able to qualify, and then have them select me is just amazing. Now for the planning and training.

Thanks for all the advise I received on this forum. It helped me out so much to read and learn from all of you. Last year my feet ached all the time, at the end of my 100 milers they killed me. To have the pain and achy feeling gone is a gift. You all are awesome.
Terry Sentinella
Great news Sentinella! It's so wonderful to hear the success stories. You didn't mention your hand - how is it doing? I was reading your previous posts and you mentioned how smoothly it went with your insurance. What insurance do you have and would you mind recounting how you approached them - it would be really helpful to me since that is the point I am at. I'm probably going to Germany for treatment but may change my mind and go to OU instead. I sent Dr. S in Germany photos of my hand and feet last weekend but haven't gotten a response yet - I'm sure I will soon. I spoke to OU a few days ago and they were nice enough to send me the insurance codes that they use. The next step is pre-authorization with CIGNA.

Also - congratulations on the Badwater acceptance!

Diane

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