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Feel like I'm going to die........
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05/01/2015 20:47
helpme 
05/01/2015 20:47
helpme 
Feel like I'm going to die........

Ruffly two years ago I took up boxing. In the process I tore something in both hands.
After a couple of months I noticed bumps on both hands. They progressively got larger/harder.
I wanted to get Radiation. My insurance doesn't see Radiation as a treatment. Because of this I elected for surgery on both hands. Worst decision I've ever made. It costed me $4,000 and bumps returned within a month.
They have been progressively growing. They are quite painful. I also now have bumps in both of my feet. It's gotten to the point it's very painful to walk. It seems in my left foot that I have swelling with some sort of liquid around the bump that I can move. It's the size of a quarter.

I've tried the following things without success:
DMSO each night
Iodine each night
Magnesium oil each night
Paba Lotion all day

Vitamins:
Vitamin E
Vitamin D
PABA
NAC
Boron
Magnesium
Tumeric

I have pain everywhere. Most days I don't feel like moving. It's making work difficult. I went to the doctor and was told all of my levels are normal other than having a high ANA. In the past 6 months I've lost 30 pounds. I gave up sugar and gluten.
I feel like my life is over and I'm just waiting for death. I am only 31 years old, but I feel every bit of 60.

Anyone have any suggestions to try?
I've attached a picture of my right hand. Is this for sure Dupuytrens? None of my doctors have ran an actual test.

Edited 05/02/15 00:10

05/01/2015 23:04
Cindymc 
05/01/2015 23:04
Cindymc 
Re: Feel like I'm going to die........

Hang in there! It sounds like you could use a second opinion as some of what you describe sounds like arthritic symptoms? Your efforts at improving your health are inspirational to the rest of us so keep letting us know how you are going. The course of DD can be very depressing and that too could maybe use some help in your case. Every day brings us closer to new therapies and treatment so do not give up. You too are a pioneer for future generations who hopefully will suffer less with DD because people like you have trialled current suggestions. Please get a second specialist opinion and see someone about the equally psychologically debilitating effects DD is having on you, understandably.

05/01/2015 23:16
helpme 
05/01/2015 23:16
helpme 
Re: Feel like I'm going to die........

I've seen 3 doctors. They've all ran my blood. Everything comes back normal other than a high ANA which I'm sure makes my condition far worse. Like super high. 640. I was negative for rheumatoid. That's what I thought I had. I guess I'll make another appointment.

05/02/2015 00:39
Cherise 
05/02/2015 00:39
Cherise 

Re: Feel like I'm going to die........

Your pic is very telling. To me it looks like Dupuytrens. Have you seen a hand dr who specializes in DC ?

05/02/2015 00:51
helpme 
05/02/2015 00:51
helpme 
Re: Feel like I'm going to die........

Yes, I had double hand surgery.

05/02/2015 06:47
spanishbuddha 

Administrator

05/02/2015 06:47
spanishbuddha 

Administrator

Re: Feel like I'm going to die........

Hi helpme

Diagnosis via the Internet is fraught with problems, but the photo of your hand does have the appearance of DD nodules and a cord.

You seem to be working through all the alternative remedies, none of which have a proven or evidence based record of success. There are other individual anecdotes of help via TCM and specific massage techniques. But be cautious about spending too much on unproven remedies.n

Do you have any of the associated risk factors you can control? Presumably you are no longer boxing.

RT is the only treatment with published results of circa 85% success for the DD stage you are at, and also LD. Your condition might stabilise or slow down, and in the meantime you should try orthotics for the LD, ask about a steroid shot for the hand, possibly the feet too for symptomatic pain relief, but really investigate your options for RT if both show further signs of progressing rather than easing. In the U.S. I should mention that cryosurgery is used with some success to manage LD. This may be an option too?

Best wishes
SB

05/02/2015 16:59
Cherise 
05/02/2015 16:59
Cherise 

Re: Feel like I'm going to die........

spanishbuddha:
Hi helpme

Diagnosis via the Internet is fraught with problems, but the photo of your hand does have the appearance of DD nodules and a cord.

You seem to be working through all the alternative remedies, none of which have a proven or evidence based record of success. There are other individual anecdotes of help via TCM and specific massage techniques. But be cautious about spending too much on unproven remedies.n

Do you have any of the associated risk factors you can control? Presumably you are no longer boxing.

RT is the only treatment with published results of circa 85% success for the DD stage you are at, and also LD. Your condition might stabilise or slow down, and in the meantime you should try orthotics for the LD, ask about a steroid shot for the hand, possibly the feet too for symptomatic pain relief, but really investigate your options for RT if both show further signs of progressing rather than easing. In the U.S. I should mention that cryosurgery is used with some success to manage LD. This may be an option too?

Best wishes
SB


I agree with SB, very good advice. Sometimes I found myself in disbelief that arthritis diagnosis want to DD and planterfaciatis also eventually went to LD. Never heard of either one of them. Then when I was diagnosed with it scared me to death. I wanted to fix it. I am a artist and designer. I made a living with my hands.

I was in denial for a long time. I think the emotional side of the effects of this disease is very seldom addressed by most doctors. It has taken a toll on most of us in many ways. Just finding the correct doctor and treatment is a nightmare..

I would leave things alone for awhile . Find comfortable soft gel liners to place in shoes and orthotics. DONOT operate on anything yet. I tried steroid & cortisone shots and found no relief in hands and feet only for a short time 2 days.

I would highly recommended shoes that don't agrevate the nodes and arches. I found great shoes and arches and have managed to keep the feet nodes at bay, for over 10 years. It is a constant adjustment as the feet change as we age. Sometimes a good massage, ice the areas and a home ultrasound treatment on hands and feet helps, I do myself and it helps better than injections.

The risk from surgery in my personal experience is too high and can complicate this disease and cause a flare.
Try some tender care at home first or ultrasound at home or at your doctors.

One other word of importance never walk barefoot without soft inserts and arch supports in you shoes at all times. I did that after about a year the nodes shrank down and I could finally walk with no pain for long periods. An absolute miracle, where all the docs wanted to do was operate. After shots failed and I found what worked for me, it eventually all came together. I knew from my moms experience how surgery went on her feet and not well but actually made it worse. It took her years to recover from surgery and complicated LD in her feet.

I hope you are able to find what's right for you. Do take it slow. Ice your feet daily 3-4 times a day and REST your feet , also freeze a water bottle and roll your feet over the small size bottle. This will help with the swelling and stretch the arch & help shrink the nodes. In two weeks time paired with ultrasound treatments and shoe inserts and hopefully that will be all you need for now. I know you will find relief . I do the same ice treatment and ultrasound on my hands.

Kind Regards
Cherise

05/02/2015 21:41
yosh01 
05/02/2015 21:41
yosh01 
Re: Feel like I'm going to die........

RT stopped the progression of DP in one hand and LD in one foot. I highly recommend it. With regard to insurance, my radiation oncologist went to bat for me and made sure the insurance company would cover it. I would not give up this option.

05/03/2015 12:10
Seph 
05/03/2015 12:10
Seph 

Re: Feel like I'm going to die........

helpme; You photograph looks like DD to me but, as has been pointed out, diagnosis by photograph and by amateurs should be treated with caution.

On the assumption that it is DD it doesn't look that bad and I personally think you should consider leaving it alone and get on with life assuming it doesn't exist. Push through the pain and eventually it will go away.

It is possible that RT may slow the growth but I don't know how people measure this. I have had DD and LD for more than 45 years and I have no idea why it gets active and then suddenly settles down. I have had years with no activity from the DD or LD and and then years with it continuously active. I have no idea why it stops from time to time. What I do know is that it gets active following each procedure that I have.

By your age I had been dealing with this disease for more than 15 years. I doesn't stop me doing anything. I have a strange handshake due to my bent fingers getting in the way and I occasionally knock things over but that's it. I am very active and aggressive in the gym, I play tennis and I cycle.

This is the disease you want to get. Its a bit inconvenient but it doesn't kill you and it won't limit what you can do unless you let it.

05/04/2015 12:29
Tusk 
05/04/2015 12:29
Tusk 
Re: Feel like I'm going to die........

Well if you have it in both hands and both feet, with pain and finding it difficult to work, it really isn't a disease you want to get. Point is aggressive versions of this disease, which you may have, can be much worse than the versions most other people have. You need to explore RT. It could help resolve some of your issues.

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