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Marie
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05/15/2010 11:21
loftusm 
05/15/2010 11:21
loftusm 
Marie

Hi Everyone

I first noticed 'blisters' on the palm of my right hand August 09. I thought I had been bitten by a mosquito, strange place to have a mosquito bite but hey what did I know. I had been visiting my daughter in Spain in the weeks before the discovery and in the past when visiting these climes had suffered some horrid mosquito bites. Upon making the discovery I thought little of it............................until in January 10 I noticed similar on my left hand.

I went to my GP who delivered the prognosis to me in a rather off hand manner and in retrospect, I now realise his ignorance of the condition allowed for his light hearted delivery. He drew my atttention to the positioning of the Pope's fingers when blessing his flock in St Peters Square and that in time my hands would mirror the Pope's during a blessing. Left to mull over this news the gravity of the situation became all too clear and as the weeks wore on my hands began to ache more and more. It has taken me some months to realise that everytime I manipulate my fingers a certain amount of pain is my reward and when I extend my fingers eg: when typing (comes with the job) I end up nearly crippled because having investigated further it has come to my attention that additional pains travelling the length of both of my arms is Carpel Tunnel Syndrome brought on, for some of us lucky few, by the Dup's.

On a second visit to the Docs he pooh poohed the pain in my arms and wrists and told me this pain was a separate issue and that with Dup's there was no pain..........ever!! He did'nt address the secondary condition, never mind take me seriously. I relayed to him the amount of pain I was suffering at that moment in time and he assured me there 'should' be no pain. I countered with 'but Doctor I am in pain' he returned the volley with 'it should not be painful' I hit back with ........'but it is painful' and we could still be sitting there today but for the fact that I had other things to do and left to go home and walk the dog.

Anyway, anyway, anyway.............joy of joys my boat has indded come in laden with untold treasures. Last night I discovered a familiar little mark on the sole of my right foot. What do you know ................it is my good friend the Lederhosen. My attention was drawn to the area because of pain, which was not there 1 hour before but before I could say 'Get that Lederhosen away from me' it had moved in and is here to stay but only until I can get it zapped away. Which brings me to my future plans to visit Hamburg and Herr Professor Doctor Heinrich Seegenschmiedt and get this debilitating problem stopped in it's tracks. Luckily I sold my house some few months back and I can afford to pay for treatment.................in Germany (the only place to consider having the procedure done - in my humble opinion). I think about what I would do and how I would cope if I could not pay for help especially since discovering the new 'wee fella'. I feel for anyone out there with this condition and wish you well in your search for a respite and for a solution.

In the past 2/3 months whilst searching for help within the UK I contacted Dr Goode's clinic in Dorset only to be told that his long term sick leave has now morphed into retirement.

Regards
Marie

05/18/2010 01:50
flojo 
05/18/2010 01:50
flojo 
Re: Marie

Marie,
Thank you for your humor and wisdom. You are a great writer and help us to chuckle about these horrible diseases!
You also do your research, get the knowledge you need about your condition, make decisions and take action. We can know our own hands and feet better than doctors, and you certainly do. Good for you!

05/18/2010 12:14
susan Clifford

not registered

05/18/2010 12:14
susan Clifford

not registered

Re: Marie

Hi,I have not written on here for ages....... thankyou for feeling the pain!!! I too have kept being told that this horrible desease has no no no pain..... in fact I believed myself quite mad for feeling it.
Sorry to read that you have problems in your feet,I have pain but no lumps!!! I actually was treated by Dr Goode in Poole last year on both my hands. I'm sorry to say that I really feel no benefit from the radiation,although I have read that many people have been pleased with the result,so I would not want to put you off!! and indeed of course my hands might have been much worse without I suppose!!
Good luck to you all out there.

05/18/2010 13:53
lori 
05/18/2010 13:53
lori 
Re: Marie

I had pain and lots of it. My hand felt cold and achy. I had a crawling feeling in my palm and my entire arm up and into my shoulder ached at night. It keep me up at night and that is what finally brought me to the doctor. I had a nodule in mu palm but figured it was a cyst or calcium deposit since it hurt. I do a lot of gardening and the shovel digs into that area so I figured I had bruised it. My pain went away with the radiation. Others on here have also had pain. So even though you read the information that describes DD it says you don't have pain, in my case it obviously wasn't accurate.

Good luck!


Lori

05/19/2010 02:51
peekaboo 
05/19/2010 02:51
peekaboo 

Re: Marie

I to have struggled with Doctors looking at me like I have just spoken in code, When I tell them I have pain they are shocked and look at me like I'm lying and have stated the same thing. ""There's no pain associated with either disease"". That's why for the last year I have been just living with it.That is up Until I took actions in my own Dupuytren diseased hands. My regular doctor listened and put me on Tramadol and lidocaine patches. She even is sending me to a reumatologist. I want no more surgeries I just want to maintain till I cant then we will go from there. But my podiatrist wants to release me to another doctor because my left foot didnt heal right and a fibroma grew back and I have multiples in my right foot. And within the last week and a half I have developed Dupuytrens in both hands. They ache, hurt, tingle same as feet sometimes. So when the doctors tell you there is no pain find another doctor who will listen !!!! I did and I am happy and content right now. But with my disease for now its ONE DAY AT A TIME approach. I hope this helps someone. Its great that this Forum is here without it I would feel as I did in the beginning that I was all alone with no support.!!! Oh and if it helps I am 45. female and I live in Iowa. None of my family have this or have had this. I dont smoke or drink or have diabetes or seizures. God Bless us all.!!

05/19/2010 16:59
patandpaula 
05/19/2010 16:59
patandpaula 
Re: Marie

Susan,
I am glad to hear someone else is having pain in their feet but no lumps!! I thought I was crazy. Ever since I first noticed the nodule in my palm two years ago, my feet have hurt so bad at night! And both palms hurt so bad that I couldnt sleep. I had radiation therapy several weeks ago, but my hands still hurt somewhat and to make it worse, I think I am getting another nodule!! Naturally the simplest treatment will not work for me, thats my life story.

Paula

05/19/2010 17:37
susan Clifford

not registered

05/19/2010 17:37
susan Clifford

not registered

Re: Marie

Hi Paula, this desease is so different for everyone,both hands and feet just don't feel like my own anymore!!! I have the stangest sensations,burning,throbbing,pulsating,seems worse at night but I suppose thats when I'm more tuned into it. I am not going to let this horrible thing spoil my life,and I know there is much worse out there,but because of the lack of help,understanding,and because it's not life threatening GP's really can't be bothered!! I was told that the feet thing could be restless leg syndrome,but believe that rubbish. The feet pain must be connected with the growth of DC in both my hands. Keep positive and I wish you well,keep fighting it and don't let it rule your life,I'm not going to let it.
Susan

05/19/2010 23:20
David26

not registered

05/19/2010 23:20
David26

not registered

Re: Marie

Susan, I have burning in both feet as well. In my case I'm sure it is part of the disease for Dupuytren's diathesis (hands, feet, and shoulder). Some of us are a bit unlucky to get the full fledged aggressive version. I've had this for less than 2 months and have 3-4 nodules in both hands, perhaps more. They burn, they are tender, a little bit of pain. I can't do much with my hands. I'm in the middle of radiation for both hands at the moment. I'll see how that goes but at the moment no difference.

The foot portion is called Ledderhose's but is really the same thing. See link on left.

05/19/2010 23:29
TangoGirl 
05/19/2010 23:29
TangoGirl 
Re: Marie

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

I am new to LD (a little over a year), but have had Restless Leg Syndrome in my left leg (same one with LD) for about 10 years. Susan, again RLS differs in symptoms from person to person; but here is what I've experienced with RLS. It started shortly after I have surgery for a broken bunion on my poor left foot. It started at night, when I was just dozing off. Suddenly, my leg (starting at the foot) would lift up about 1/2 meter in the air, as if like someone were pulling it with a string. Then came the fun part - it would drop and thud onto the mattress, prompting my husband to say, "What the H was that?" At first I thought it was related to nerve regrowth from my surgery, but after a month of bad nights for both my husband and me, I mentioned it to my podiatrist. He sent me to a neurologist who diagnosed it and put me on Depakote. My RLS really feels like creepy legs, that want to move no matter what I tell them. I don't have what I would call pain with RLS, just the overwhelming need to move. My husband has tried to hold my leg down and it still fights him. Mine act up mostly at night; but if I sit for too long without moving, it will flare up in the daytime. My colleagues no longer get alarmed when "someone" kicks the conference table during a long meetings! As for medication, I've had a hard time finding something with acceptable side effects for me. The Depakote gave me an abnormal heartbeat and I fell asleep backing out of my drive while taking Mirapex. After trying others, we have settled on 1mg of Klonopin (Clonazepam) in the evening. I've been on this dose for several years and really need to increase it, but hate taking this family of drug, so am sticking with the 1mg. We also got a Temperpedic mattress, which allows both of us to sleep better, even if my legs start dancing. I'm not a doctor, but when I read your post, I didn't think it sounded like RLS to me. Now that I've been blessed with LD, I get pain (lots of it at times), itching, deep burning feelings and cramps in my foot. Your remarks made me wonder if there is any correlation between RLS and LD... Hmmm... Hang in there!

05/20/2010 18:44
CMurzda 
05/20/2010 18:44
CMurzda 
Re: Marie

Hi Marie.

First of all, I am sorry that you have this condition. Regretably, so do I. I have dups in my left hand with minor contraction of my middle finger and 1 nodule in my right hand with no contraction or cords. I also have ledderhose in both feet and it feels like I amd stepping on rocks if I walk bare footed. I can tell you that when my nodules or cords are growing I can feel a mostly burning or sometimes itchy type of sensation in my hands or feet. I awake with knuckle pain every day caused by the knuckle pads. I occasionally have a throbbing type of achiness in my hands and feet as well so I understand what you are going through.

I wanted to encourage you to keep your spirit up. Do not let this drag you down any. I always remind myself that at least I have hands and feet. I am 43 and have two brothers who have it much worse than I do. I had radiation treatment on my hands and feet to which I credit slowing it down but have had new nodules grew in the place where in one foot completely disappeared. I find it very helpful to lean on others postings here in the forum. You will never be alone as long as you have this web site up. Its a very good support group!

Take care of yourself!

Chris

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