| Pain and Dupuytren's |
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08/26/2008 06:09
Linda Bnot registered
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08/26/2008 06:09
Linda Bnot registered
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Re: Pain and Dupuytren's
Fran..
If you are talking about regular standard surgery..Forget it!!! Get more info..use web sites of doctors that contribute to the forum..www.thehandcenter.org. or others....there are lots of questions and answers on these sites..You can get a list of docs from them also..You need a doctor that is very much up to date on dups..
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08/26/2008 07:42
191178 
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08/26/2008 07:42
191178
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Re: Pain and Dupuytren's
Hello Fran, I know exactly what you mean,the no pain thing is confusing,but thats simply not true as I read this forum. My hands and fingers are very sore,without any sign of contracture!!!along with other symtons,slight swelling too. I think your right about the surgery,we must get all the information available first,before we decide on the more drastic treatment,and make sure we get the best people for the job,thats why this forums so helpful. Thankyou to everyone for your posts and I wish you good luck with your lives.
regards Susan.
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08/26/2008 10:43
SteveBnot registered
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08/26/2008 10:43
SteveBnot registered
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Re: Pain and Dupuytren's
I have a slightly swollen index finger on my right hand, three nodules on my right hand and no chords (at least none that I am aware of). No contracture either. I have tingly feeling all over my body but it is not constant, it 'moves around'. Sometimes its in my legs, sometimes my arms, also my neck and face. Its quite slight and a bit annoying but not really terrible. Last week I had terrifc pain from the nodules themselves, a real burning feeling like someone was putting out a cigarette in the palm of my hand (although not quite as intense as I imagine that would be). I managed to calm it down with an ice pack. I am familiar with the 'restless leg' feeling but must say it is very infrequent and so far has not been too much of a concern.
I also have another symptom which I have not seen mentioned on this forum, its a feeling of something lightly touching my face? Almost like the feeling you get when you walk into a spider web. You can feel it touching you but only very lightly but it makes you want to touch your face. When I do touch my face, the feeling goes away. Also, it comes and goes. Weird!
I am not sure how much of these feelings are mental and how much are physical. Certainly I have noticed that after I read about a particular symptom, I start to feel it too! Now, that could be a very unfortunate coincidence or it could actually be something that I am causing to happen by worrying about it. I must say I don't put a whole lot of stock in the theory that we imagine pain, I usually find if you feel pain, there is something causing it and its not the imagination. Especially when there is something physical that you can see (like the changes in the skin/tightness/nodules etc). That said, I am aware that some people do cause their pain by thinking about it too much.
My hands are stiff in the morning but the last few days have not been too bad. What I have noticed though is my fingers are 'harder' than before, almost like they have less 'fat' in them. Difficult to explain but there it is. I have realised that much of this disease is difficult to explain!
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08/26/2008 12:15
frakon
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08/26/2008 12:15
frakon
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Re: Pain and Dupuytren's
Linda,
Thanks for the other site. I am calling to cancel the surgery today. I read the Dupuytren site from the society and got a lot more information and also pictures of how it looks. I dont have the contracture yet but the tendons are affected. No nodules, but lots of pain and its intermitten. No ryhme or reason to it. Although I think cold affects it. I also have arthritis in my hand which makes me wonder which disease is causing the pain.
I was not told nor did I ask what stage I was in. As a matter of fact I wasnt told much of anything except what it was and how a simple surgery could allow me to bend my finger again (to my palm) and lets get it scheduled.
I'll look into the other Drs. and see what they have to say. I do have trigger finger on the ring finger and the Mayo site said that you could have that with beginning DC. Has anyone checked to see if other people in the family have had it like grandparents or Aunts and Uncles? Just wondering if anyone has made a connection that way.
What I saw at the DC society in the photos is a lot worse than I have it. At first I thought it doesnt sound too bad but the photos say it all. It can get a whole lot worse. I have trouble picking things up sometimes and turning pages and holding a pencil. If I get my mind off it, I think it's not as bad. But when you have constant discomfort when you hold do things with your hand it's not so easy to get it off your mind.
Fran
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08/26/2008 22:28
reforest 
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08/26/2008 22:28
reforest
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Re: Pain and Dupuytren's
Quote:
Thanks for the information.It's the pain and weakness in both my hands and arms that is getting worse that concerns me.I'm trying to build a picture of this desease,but get confusing results,it's all the unknown,having never heard of this condition and reading people's experiences,I see that there is not a typical path that DC takes.I feel it's aggressive as the mass in my right palm grew in a matter of 12 weeks,I actually felt it growing,which is strange, but yes I'm lucky not to have contracture yet!!Been to my GP today and she's refering me to hand surgeon,hopefully the injections will be discussed and also radiation therapy,read somewhere that this can help too.I'm aware of similar sensations in my lower legs now,but have no lumps in my feet,so am trying to ignore this,I tryed this method with my hands as well but alas here I am.
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08/26/2008 22:43
reforest
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08/26/2008 22:43
reforest
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Re: Pain and Dupuytren's
After reading these posts, I empatize with you all. This Thurs I am to visit Dr for "nerve conduction testing" or EMG testing, I believe it will be a waste of gas and time. My pain has now spread from my fingers/palms and radiates up my arm. My GP says I have "tennis elbow", but I now associate it to DC. I've been trying to contact Dr. Kline in Boise regarding injections (Kenalog) but to no avail. If I can't get a hold of him, then I am going to seek out NA in CA. I continue to use ice packs on my hands in the evenings, alternating to heat packs....then use an electric hand massager to loosen things up. Over the past 6 months, the pain is constant, even at night. Driving is a b*$ch
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08/27/2008 23:21
kelik22not registered
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08/27/2008 23:21
kelik22not registered
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Re: Pain and Dupuytren's
yes, mine was painful from first nodule. now i have advanced DC in both hands. had both surgery and NA, DC returns soon. my hands are stiff and painful all the time, besides contractions pulling my fingers into palm, they pull slightly sideways causing arthritis in joints. also my "funny bone", down by the elbow area is so sensitive a small bump causes major pain lasting 5 min. or so(not so funny). my pain is bothersome, sleeping has gotten very hard, i hate drugs but live in calif and just got a script for weed(legal here). one or two puffs before hitting the sack and i sleep thru the night for now. doesnt seem to relieve the pain, but makes me alot less aware of it. being i have tried just about all treatments with failure, this at least allows me to function for now without sleep deprivation added to my list of ailments. i also have LH, both feet.
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08/30/2008 10:39
Linda Bnot registered
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08/30/2008 10:39
Linda Bnot registered
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Re: Pain and Dupuytren's
Dr. Kline should not be that hard to reach..He has ofices in Idaho and Oregon..s hei s on the border. Keep Trying......I think I am going to schedual with Benhaim at U.C.L.A. BECAUSE HE IS CLOSER..BUT..i CANNOT FIND A WEB SITE FOR HIM..... I GOT A TON OF INFO from Dinklers web site and Eaton's.. the only thing about Dinkler is heis our of ppocket until insurance reimburses and that can be expensive...
I think you can look up Eaton, Florida and Dinkler, Larkspur on web.. Also see u tube look un dupeytrens..Kline is there with a web site...and phone number.......I will see if I can find out more information for you.
Linda B
ANYONE KNOW IF BENHAIM HAS A WEB SITE??????? It always makes me feel easier to see before and after pictures
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08/30/2008 11:30
Wolfgangnot registered
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08/30/2008 11:30
Wolfgangnot registered
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Re: Pain and Dupuytren's
Linda, you find Dr. Benhaim's address (and also Dr. Kline's new address) on http://www.dupuytren-online.info/NA_list_North_America.html. Dr. Benhaim's contact data include a web site.
Before/after pics are e.g. on http://www.dupuytren-online.info/needle_aponeurotomy.html and many more on Eaton's or Denkler's web sites.
Wolfgang
Quote:
Dr. Kline should not be that hard to reach..He has ofices in Idaho and Oregon..s hei s on the border. Keep Trying......I think I am going to schedual with Benhaim at U.C.L.A. BECAUSE HE IS CLOSER..BUT..i CANNOT FIND A WEB SITE FOR HIM..... I GOT A TON OF INFO from Dinklers web site and Eaton's.. the only thing about Dinkler is heis our of ppocket until insurance reimburses and that can be expensive...
I think you can look up Eaton, Florida and Dinkler, Larkspur on web.. Also see u tube look un dupeytrens..Kline is there with a web site...and phone number.......I will see if I can find out more information for you.
Linda B
ANYONE KNOW IF BENHAIM HAS A WEB SITE??????? It always makes me feel easier to see before and after pictures
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