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R/T - Hands Worse - Maybe Other Things Going On Too
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03/15/2014 19:29
Lowell 
03/15/2014 19:29
Lowell 
R/T - Hands Worse - Maybe Other Things Going On Too

BURN OUT from to much investigation and seeing Doctors and getting nowwhere!

,.. I have done two rounds of radiation as prescribed by the Professor in Germany,,12 weeks apart here in Miami..., finished in December, and no improvement afterward or now, actually my hands are worse....developed a couple more nodules and cords......AND MY THUMBS ARE SORE AND ACHE 24 hours a day, even though I have no real contracture (yet every finger and thumb is being affected).

My skin is wrinkling a lot more in my palms and fingers and thumbs, even where no radiation was done, and have weird straitions of vertical lines runing up my fingers and thumbs, of folding skin I think....they sort of look like old age thin wrinkles, thicker ones kind of look like thin tendons being slightly exposed or something above the skin running up my fingers and thumbs, something to that affect, ----and no Doctor can tell me what they are, or are not.

The radiation treatment was in my whole palm and up just a little in each finger and thumb in both hands (just a little past the crease of where the fingers and thumbs bend ---where the fingers and thumb start)

Should I have some good affect by now, if I were to have any at all?

Also: I have been reading about Carpal Tunnel Syndrome lately looking for other things that could cause all these various pains in my thumbs and fingers (which I am not supposed to have with Dupuytrens)..... --- it seems I have all the classic symptoms of Carpal Tunnel as well as Duputrens, even no Doctor has said I have it. But if I do have carpal, it is making my hands much worse, my fingers ache, my thumbs ache, the webbing between the thumb and forefinger aches....etc etc, on top of the nodules and cords I have as well.

Doctors have subscribed Celebrex for the general pain and some of the painful nodules (which are not suppossed to be painful by the way) ...And I have been on that for almost two weeks, and not one lick of improvement at all,, NOTHING.

I just don't know what to do.

Has anyone heard of Dupytrens causing Carpal Tunnel?

Last August when this all flared up, and the nodules and cords came, then the soreness and aches all over my hand came as well, including weekness, uncomfortable rubber band type stretch feelings and tightness of fingers (I guess due to cords), and just weird sensations in general, including burning feelings from time to time in hands and fingers....

I have been to 5 hand doctors.....each one said basically live with it, it is not bad enough for treatment, come back when your fingers curl up....,,,,,YET, I can't use my hands hardly at all because they hurt all over including my fingers and now my thumbs to a great deal, whereas before my thumbs did not seem to be all that involved. .......

HELP, ANY ALTERNATE SUGGESTIONS? Physical therapy, yoga, massage, whatever? My life has become sub-standard, can't do much of anything (can't twist things, press on things, liftt things, pull things, can't even wash my hands or do laundry without my hands hurting to some degree.

thanks, anyone out there with suggestions

03/16/2014 00:32
Christl 
03/16/2014 00:32
Christl 

Re: R/T - Hands Worse - Maybe Other Things Going On Too

When was your last round of RT? It takes some time. My hands also hurt after RT for some time and the pain went away after maybe one or two month after my second round of RT. Also my nodules were gone after the second round of RT. The lines on your palm and fingers I would guess are because of the RT. We all have them, at least I have them and my husband too. I do not worry about that.

Use cycling gloves when you do work and also go to the hardware store and get foam for pipes, cut them into pieces and use them when you work. I use them on knifes when I cut vegetables, or whatever. I use gloves to garden, etc. I also drive long distances with cycling gloves.

Give it some time. RT is doing something to your hands and that hurts. Don't strain your hands. I do not open anything anymore.



Christl

03/17/2014 19:02
moondanc 
03/17/2014 19:02
moondanc 
Re: R/T - Hands Worse - Maybe Other Things Going On Too

Lowell:


HELP, ANY ALTERNATE SUGGESTIONS? Physical therapy, yoga, massage, whatever? My life has become sub-standard, can't do much of anything (can't twist things, press on things, liftt things, pull things, can't even wash my hands or do laundry without my hands hurting to some degree.

thanks, anyone out there with suggestions

I had RT --but only one round-- several years ago. One hand I had it before NA, the second after NA. It didn't seem to stop the progression of my disease very much but I do find my palms are much softer.

That said, I can speakly highly of hand therapy. I had NA on both hands on September and am still doing hand therapy with an occupational therapist who only does hands. Try to find someone like this--someone who just does hands-- an OT, not at PT.
http://www.asht.org/

I start out with hot wax and hot packs to soften up my hands and then she uses a variety of treatments--ultrasound, a red pulse light, massage, stretching and stregthening exercises.

Home therapy is VERY important-- I have a hand gripper (with adjustable rubber bands) I use at home to build strength, a mini hand massager/vibrator- Norco brand, (it has three adjustable tips and I use them to massage the nodules and most important finger putty which is very soothing and also builds strength:
http://www.amazon.com/Hand-Therapy-Putty...m/dp/B0092BEBHG
Even one of those devices you put in the microwave to heat up and then put on your hands can be soothing.

Medicare has paid for all of this.

Hope this helps,
Diane

03/22/2014 03:55
cschieber 
03/22/2014 03:55
cschieber 
Re: R/T - Hands Worse - Maybe Other Things Going On Too

Hi Lowell. The skin on the palmar side of my fingers looks exactly like you're describing yours after RT. I had one round in Hamburg. I also have pain associated with DD, mostly from knuckle pads. The RT knocked out the painful nodules on my palms and thumb webs. Nevertheless, I had persistent, worsening pain on the two fingers that received NA (PIP) and decreased range of motion in the PIP and DIP joints of those fingers. The doc I saw said it was trigger finger and injected with cortisone. Blessed relief for 2 months. Came back and progressed to the point that every time I used my hands was difficult and depressing. I needed aids for very simple tasks. I went back to the doc and he said DD isn't painful, it's trigger finger. Hmmmmm. Got another shot of cortisone in the offending fingers but this time I stopped wearing splints at night. My fingers are still pain free after two months. I guess this is a long winded way of saying that yes, you may have something else going on. DD is often combined with carpal tunnel. You should probably get a test; it's painless and short. Leave no stone unturned. This disease sucks and it's even worse when you live with pain for months or years thinking it's the DD when it's not. Good luck!!!!

03/27/2014 18:43
mukasama 
03/27/2014 18:43
mukasama 
Re: R/T - Hands Worse - Maybe Other Things Going On Too

I don't have carpal tunnel, but I have ulnar nerve pain (tingling numbness in little fingers on both hands and tendonitis type pain in both forearms and right shoulder) that came on suddenly at exactly the same time the DD showed up. I doubt it is a coincidence. It is more of a problem for my work right now than the DD. Keeping my whole arm straight at night, not just my wrists, seems to help a lot. I wear bicycle gloves which may be helping, they protect the ulnar nerve). I'm also doing as much as I can with my diet to make it anti-inflammatory but who knows if that helps. I can't hurt, right?

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