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Ongoing ache and pain
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05/17/2018 01:08
Lee12 
05/17/2018 01:08
Lee12 
Ongoing ache and pain

Hey folks- was diagnosed exactly a year ago and completed RT in Calgary, Alberta 8 months ago. I had another round of RT just 8 weeks ago aimed at the pinky on the right and the index on the left along with both arches. I'm coming to terms with the fact that the RT is going to fail because of the constant ache and burn in both hands AND feet that just will not let up. Question now is to those who have been down this road- does the ache and pain EVER go away?? Ever??

05/17/2018 07:24
spanishbuddha 

Administrator

05/17/2018 07:24
spanishbuddha 

Administrator

Re: Ongoing ache and pain

Lee12:
Hey folks- was diagnosed exactly a year ago and completed RT in Calgary, Alberta 8 months ago. I had another round of RT just 8 weeks ago aimed at the pinky on the right and the index on the left along with both arches. I'm coming to terms with the fact that the RT is going to fail because of the constant ache and burn in both hands AND feet that just will not let up. Question now is to those who have been down this road- does the ache and pain EVER go away?? Ever??
Sorry to hear this Lee, has there been any change, improvement, in the other physical symptoms? My own nodules, cords went from hard and sore to softer and without pain, but it took several months. I do still get aches and pains, and cold/hot soaks usually helps, and gentle self massage. Have you ruled out the pain is not from some other cause?

05/17/2018 14:58
Lee12 
05/17/2018 14:58
Lee12 
Re: Ongoing ache and pain

Thanks for that Spanish Buddha- the only success that I've seen so far is that the 3 main nodules shrunk after round 1. That was pretty much it. After that I had lots of progression both in and out the RT fields. Cords and new nodules and now palms burn and hurt. I've read some folks have waited as long as 18 months to see things settle down and without much else to hope for, I'm hanging my hat on that idea. But the ache and constant burn is a total bummer. Sleeping with frozen water bottles is beginning to wear me down. I brought it up to my GP and she sent me in for X-rays but nothing ever came of that. I've fought for a consultation with a "hand surgeon" and haven't got a date yet- he may not even see me without a true contracture- I know that it is what it is and I'm accepting that but it would be sooooo much easier to accept if the darn pain and burn would go away. on the good side- hands are still flat. For how long? Who knows.

05/17/2018 15:25
springchicken 
05/17/2018 15:25
springchicken 
Re: Ongoing ache and pain

Hi Lee12,

I'm so sorry to hear about your experience. I just wanted to add, at the risk of the info being redundant, that some have found magnesium spray, early morning hand soaks in magnesium and supplemental magnesium helpful.


Lee12:
Thanks for that Spanish Buddha- the only success that I've seen so far is that the 3 main nodules shrunk after round 1. That was pretty much it. After that I had lots of progression both in and out the RT fields. Cords and new nodules and now palms burn and hurt. I've read some folks have waited as long as 18 months to see things settle down and without much else to hope for, I'm hanging my hat on that idea. But the ache and constant burn is a total bummer. Sleeping with frozen water bottles is beginning to wear me down. I brought it up to my GP and she sent me in for X-rays but nothing ever came of that. I've fought for a consultation with a "hand surgeon" and haven't got a date yet- he may not even see me without a true contracture- I know that it is what it is and I'm accepting that but it would be sooooo much easier to accept if the darn pain and burn would go away. on the good side- hands are still flat. For how long? Who knows.

05/17/2018 16:05
Lee12 
05/17/2018 16:05
Lee12 
Re: Ongoing ache and pain

Thanks for taking the time to suggest spring chicken. I really appreciate that. Ya. My middle name is magnesium. Lol swallow it, eat it, rub it in. Great stuff and it helps with cramping. Alas not so much hand ache and burn. But ill keep using it. Daughter is looking at cannibas oil and ive been exploring low dose naltroxene. So options coming. I just wonder if this is the new norm! I know people with arthritis suffer daily. Maybe this is mine. 1 year of this and i year of frozen shoulder. Getting really boring. (Dr said no to arthritis)

11/11/2018 07:34
stephenp 
11/11/2018 07:34
stephenp 
Re: Ongoing ache and pain

Hi Lee

I got quite rapid relief after RT, within a few weeks. However some low level intermittent aches remain, even after 7 years!

Hopefully, your disease progression has now halted and you have pain relief.

Cheers

Stephen

11/11/2018 23:02
Scarlettnova 
11/11/2018 23:02
Scarlettnova 
Re: Ongoing ache and pain

Hi Lee,

You might want to join the FB group: DART - Dupuytren’s Advocates for Radiation Therapy. Many members have had RT and might be able to suggest something for your pain and answer your questions. Meanwhile in Nova Scotia, we have no RT available for DD. Sigh....

11/13/2018 15:14
Lee12 
11/13/2018 15:14
Lee12 
Re: Ongoing ache and pain

Stephanp thanks so much for the reply! Things are looking up a bit. I'm actually about 4 weeks out from RE-rt. I was a full year out from my first rt experience and based on those results (both in and out of field progression) my RO approved of the idea of repeating. I had three small nodules that had reacted positively to the rt originally so we knew the rt could work. Unfortunately the Dups galloped all around it and travelled pretty much all through both palms, thumb spaces and up the fingers. So it was worth a shot. She chose to radiate on alternating days for 7 sessions. I hadn't had any reaction to original RT so was in for a huge surprise as I guess rt is cumulative! Wow! Hands roasted! Nasty red, tight sore palms for 2 weeks and then major blustering along with a whopping case of itchy dermatitis on the tops. Used buckets of recommended lotions, steroids for the tops and gloves. Palms blistered and completely peeled. 4 weeks out and everything is settling down finally. Radiation does weird stuff to age spots on your hands! Watching those carefully. BUT the good stuff! Those 3 original nodules have nearly disappeared and the whoppers on the right have definitely reacted! So now we wait! I also had given CBD oil a shot and along with one spot radiated on the ball left foot (arches done previously for a row of small nodules in each arch) I'm officially pain free in my feet!! First time in 2 years so pretty excited about that! Heck! Heading back to supply teaching this week! So thanks again Stephan! Things are finally looking up!
Oh- I will absolutely give the cbd oil credit for stopping the constant burn in both hands and feet! Within about 2 weeks of oral cbd along with a cbd balm, the burn disappeared! Amazing stuff!

11/13/2018 15:19
Lee12 
11/13/2018 15:19
Lee12 
Re: Ongoing ache and pain

Scarlettnova! Thanks! Yes I'm on the DART site as well! Fantastic info! You might have to head west for RT!

11/13/2018 16:06
spanishbuddha 

Administrator

11/13/2018 16:06
spanishbuddha 

Administrator

Re: Ongoing ache and pain

Lee12:
Stephanp thanks so much for the reply! Things are looking up a bit. I'm actually about 4 weeks out from RE-rt. I was a full year out from my first rt experience and based on those results (both in and out of field progression) my RO approved of the idea of repeating. I had three small nodules that had reacted positively to the rt originally so we knew the rt could work. Unfortunately the Dups galloped all around it and travelled pretty much all through both palms, thumb spaces and up the fingers. So it was worth a shot. She chose to radiate on alternating days for 7 sessions. I hadn't had any reaction to original RT so was in for a huge surprise as I guess rt is cumulative! Wow! Hands roasted! Nasty red, tight sore palms for 2 weeks and then major blustering along with a whopping case of itchy dermatitis on the tops. Used buckets of recommended lotions, steroids for the tops and gloves. Palms blistered and completely peeled. 4 weeks out and everything is settling down finally. Radiation does weird stuff to age spots on your hands! Watching those carefully. BUT the good stuff! Those 3 original nodules have nearly disappeared and the whoppers on the right have definitely reacted! So now we wait! I also had given CBD oil a shot and along with one spot radiated on the ball left foot (arches done previously for a row of small nodules in each arch) I'm officially pain free in my feet!! First time in 2 years so pretty excited about that! Heck! Heading back to supply teaching this week! So thanks again Stephan! Things are finally looking up!
Oh- I will absolutely give the cbd oil credit for stopping the constant burn in both hands and feet! Within about 2 weeks of oral cbd along with a cbd balm, the burn disappeared! Amazing stuff!
Thanks for letting us know about this. There are, have been reports of re-RT, usually a repeat half dose 5 x 3Gy, but rarely so soon, usually after 18 or 24 months, and not the cycle you report 7 x x?Gy alternate days. The reaction is interesting, but it’s the long term result I hope you will report back on in the future.

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disappeared   progression   Unfortunately   magnesium   consultation   recommended   Dupuytren’s   dermatitis   constant   Scarlettnova   intermittent   contracture-   experience   interesting   Spanushbudda-   alternating   nodules   looking   Ongoing   supplemental