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To avoid working palms or not?
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08/23/2015 16:24
dpjcrfsh 
08/23/2015 16:24
dpjcrfsh 
To avoid working palms or not?

While just recently diagnosed with DD, for some time I've been observing how different activities affect the nodes in my hands. One activity I do frequently is fishing with a dip net (foot wide net with a 5 foot handle). I normally have mild pain around the nodes, but after a heavy day of working with the net, my hands feel great and have absolutely so pain. It seems like the effect might last a day or so. So I'm wondering if it might be like arthritis -- lots of movement improves things. I've also heard that causing stress to the nodes might activate things and cause new growth.

I've always done weight lifting, but about a year ago I increased my number of days or workouts per week from 2-3 to 4-5 (almost doubling). It seems during this time, though that my DD has been more active. I'm considering adjusting my exercises to mostly avoid pressure on the palm. Along these lines, would it be reasonable to grip the bar with the distal half of the fingers? Do nodes ever appear on the fingers? If so do the appear on the distal parts of the fingers? Seem like the pictures of palmar fascia I've seen have the fascia mostly on the palms and not extending or only slightly extending onto the fingers.

08/23/2015 21:40
Seph 
08/23/2015 21:40
Seph 

Re: To avoid working palms or not?

Don't let the DD stop you doing anything. Its not like arthritis so more activity won't help but less activity might cause you to die from something else so best just push through. The pole on your net might rub on the DD nodules which will lead to calluses or cause to to wear gloves but thats it in my view. Less activity or more does not seem to affect the timing or rate of growth in my case.

I am in the gym or play tennis every day. I use heavy weights sometimes and high repetitions on other days. My DD can be active for months then go dormant sometimes for years. As I get older the dormant periods seem to be shorter so maybe there is a factor there but my activity level has been the same for the 45 years that I have had this disease.

08/23/2015 21:56
dpjcrfsh 
08/23/2015 21:56
dpjcrfsh 
Re: To avoid working palms or not?

Thanks Seph! Do you have your history of contractures, procedures done, success rate for yourself written up anywhere? Looks like you've led a good life with the disease.

08/23/2015 23:52
Seph 
08/23/2015 23:52
Seph 

Re: To avoid working palms or not?

You will find my responses with details throughout this web site but in short I have had DD and LD for more than 45 years (since my early teens).

I had surgery on one foot in my early teens (Not recommended. No damage in my case but a waste of time). In addition I have had surgery on my left hand when I was in my 30's. I am now 61. Over the past 8 years I have had NA in Paris 3 times on each hand and I have NA done once in Sydney. The Sydney experience was a fail but in Paris each time I have had good results.

After surgery on my left hand the NA became active in my right hand. Each time I get NA I seem to get a flare of DD activity that last a few months and then settles down.

I am going back to Paris to get both hand done again at the end of September. Dr Manet-Chopin is going to do both hands in one session and I am not looking forward to that.

In early September we will be cycling for 6 days in Northern Italy. My palms resting on the handle bars for 6 days will cause a bit of pain as I have cords running down the outside edge of each palm but I don't expect it to aggravate the DD.

Edited 08/24/15 03:04

08/27/2015 01:24
dpjcrfsh 
08/27/2015 01:24
dpjcrfsh 
Re: To avoid working palms or not?

Thanks for you detailed responses. Do you have any significant deficits with your hands? Can you still do fine work with your fingers? Have you considered Xiaflex rather than NA? Your case is very encouraging considering how long you've had DD.

08/27/2015 12:22
Seph 
08/27/2015 12:22
Seph 

Re: To avoid working palms or not?

Do my hands seem a bit different - yes. They are often a subject of conversation at dinner parties. Do I have to adjust how I approach picking up a bottle of wine - yes. Especially if it it something good as I do find myself knocking things over. I don't mind knocking over wine offered by either of our daughters but a Genevrieres Meursault or a Puligny-Montrachet now that would be a problem.

A response that is a bit trite I know but my purpose is to point out that this is the cancer you want to have. It doesn't kill you. Yes bent fingers get in your way. And you may need to adjust how you do a few things but if you recognize that it is an inconvenience and nothing more then it becomes a challenge rather than a problem.

I don't knit or sew but I could. I play tennis, I ride, I swim and I am a bit of a gym junkie.

NA involves needles and cutting. Xiaflex involves chemicals being injected into your body. I know its all safe - until they discover that it isn't. Here in Australia they tried to get me to participate in a trial but I declined. I will stick to the mechanical rather than the chemical. Just old fashioned I guess.

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