I need any advice or suggestions for the pain I have with my dupuytrens. I was diagnosed recently in April by a hand surgeon, but started getting pain and stiffness in my hands about 5 years ago, I'm 27. Since diagnosis, in just a few short months my hands have worsened with increasing dimples appearing, and the main nodule in my right hand has almost doubled in size. I have no contractures as of yet but wake up every morning with intense pain and stiffness that leaves me unable to make a fist or straighten my fingers for a couple hours. The more I use my hand, even if just "normal" usage, the worse it feels the next day. The pain is so unreal it feels like a broken bone or like someone slammed my hand in a car door. In my right hand, which is by far the most painful, my middle joints in each finger have gotten so stiff it's hard to bend them as quick or smoothly as before. Trying to make a fist or grip actually hurts more than straightening my fingers.
I have been referred for radiation but the oncologist never called me back after I told him I'm uninsured. The pain is getting so bad its hard to hold a pencil, use any amount of pressure (I can't even open a water bottle), and my job involves holding a bag at times that can weigh up to 30 pounds. It's getting in the way of my job and I'm having to call out so often I'm afraid of getting fired. I'm a science student so writing and fine motor movement is kind of my life. I've tried ibuprofen, aleve, muscle relaxers, NSAID perscription gel, magnesium oil in lotion and spray form, heat, ice, etc. I have a extremely adverse reactions to prescription pain meds that leave me bedridden and vomiting my guts out, and was told by the doctor to avoid steroids at all costs because I'm hypersensitive, last time I gained 40 pounds in a month and didn't sleep for over 4 days.
I'm kind of at a loss of what else I can do, I can't afford to go back to the hand surgeon for 150 dollars just to have him shrug at me. The threat of a contracture is nothing compared to this pain right now. My hands are constantly bright red and blotchy with the occasional deep bruising in the center of my palms. About a month ago I started taking glutathione after doing research into dupuytrens and free radical damage and have found that it is definitely helping if I take if before work or before activities where overuse may occur (like using a computer mouse apparently), but its not really helping in the overall daily pain. Tempted to cut my hands off and get a pirate hook. Also I tested negative for arthritis. Anyone have suggestions for pain control?
I am very sorry to hear about your pain! Are you sure that Dupuytren's is causing your pain? "occasional deep bruising in the center of my palms" may indicate something else. But Dupuytren's is specific and different for each of us, so maybe it is actually Dupuytren's that is causing the pain. In that case, where are you living? Would you be able to travel to Germany to get RT? It's much cheaper there than e.g. in the USA. But you should be aware that for some people RT is causing inflammation, which is unfortunately not predictable.
Have you tried soft, careful massaging your hand? It might make the tissue softer and maybe reduce the pain, even if it is initially not very pleasant because what you are decribing sounds like inflammation.
Sorry to hear you are still struggling with this since your originally post and diagnosis. It seems you have tried most things for the pain! I wonder if some other inflammatory condition is going on with your hands, as well as the DD, given your description. Although I too would avoid steroids in most cases a short sharp dose, oral or by injection (kenelaog in the buttocks) might help normalise things if this is the case, but only a Dr could advise. Did you try the massage previously suggested, also hot soaks with epsom salts, pain patches, ice. It might be worth asking for a referral to a pain clinic or nurse. I would also seek help for gentle hand exercises from a hand clinic. Have you tried splinting a neutral shape (such as is done for carpal tunnel) overnight? For the early DD we would still recommend RT, but this would only help if the pain is from DD and would probably not be advised if there is another source of inflammation or pain.
Hey guys thanks for the responses. I've tried most of what I can find online, including massage and soaks, etc. Massage even gently really hurts and feels like it's doing more harm than good, it can feel like pushing a bruise and some times I get the pain I occasionally get when flexing my fingers straight, it literally feels like I can feel skin ripping. Its getting to the point where its actually debilitating, any sort of pressure involving my fingers hurts like ripped skin or a torn ligament. I'm a perfectly healthy 27 year old otherwise so having problems holding a pencil or wiping after the bathroom is just embarrassing. I have to have my fiance open my water bottles for me, and if he's not around I use my teeth (not the best but oh well). As for going to Germany for RT, I'm hoping to set aside some money for that as an alternative. I graduate next spring and I think by the time I save up enough for a trip I may have a full time job in my field locked down and hopefully some health insurance. Without insurance here I was quoted an upwards of 20k for the entire series.
I'm not sure what else I might have going on with my hands. The hand surgeon said I was otherwise fine, I had complained of occasional nerve problems with my elbow from putting too much pressure on my ulnar nerve while writing or using the computer, and checked me out for cubital tunnel and carpal tunnel and said no. I've tested negative for arthritis a couple times now. I don't exactly have much disposable income to throw on more tests. I'm a full time student, work as an lab intern for free a few days a week, and as a result only work like 15 hours a week to pay for gas money, etc. I go to a local clinic here that gives me basic medical care for 10 dollars but they can only do so much, and so many doctors think I just want pain meds, but I refuse to use them because of the adverse reactions.
The pain I think is very similiar actually to what I used to feel in my feet. I used to work a job where I was on my feet walking for 8 to 10 hours a day. On bad days my pedometer would clock me walking 10 miles. One holiday season (retail) I hurt my feet so badly I had to go to the podiatrist and get ultrasound therapy and soft casts and was in a wheelchair at work for 3 weeks because I had the one of the worst cases of plantars fasciitis he had ever seen. This also caused deep bruising in the arches of my feet and pain so bad I could barely stand. Even now I have to be careful with walking long distances because the pain lasts for days. Its been a few years since that happened but after my Dupuytrens diagnosis it made me curious if ledderhose was partially responsible, although I've yet to find a nodule in my feet. I was so hoping that this diagnosis would help clear up questions I've had for years but its just kind of opened more doors to more questions. I've experienced autoimmune-like symptoms starting around age 16 but my bloodwork has always been "beautiful" according to doctors. I've been tested more than 20 times for thyroid problems because my mother has hypothyroidism and a cousin of mine has hashimotos. I've been tested for lupus at least 3 times.
This is just driving me crazy. I can't imagine how dupuytens could cause this much pain. I'm a biotechnology biomed student so I'm familiar with the disease, autoimmune diseases, the cellular theory and mechanisms behind it and I can't understand why I'm experiencing this. The stiffness in my joints and pain getting increasingly worse doesn't line up with the changes to my hands being fairly minimal with no sign of a contracture, and some of my biggest pain is coming from the 2nd joint of my middle finger. I also have very weird skin on my hands with dryness that isn't relieved by hand creams, with a constant white ashiness to them. I've attached some of my most recent pictures, I keep records to keep track of progression, you can kind of see the constant red blotchiness, and in my left hand is one of the bruises I had recently near my thumb that was just starting to appear as red.
Based on your detailed description I can't help the feeling that there is something else going on beside early Dupuytren in your hands, and beyond, to experience that kind of pain. With the hypersensitivity to so many things which you describe RT may not be the solution in your particular case. I hope you'll find fast what is going on, and a remedy.
You wrote:
Quote:I have no contractures as of yet but wake up every morning with intense pain and stiffness that leaves me unable to make a fist or straighten my fingers for a couple hours.
Is this for both hands, and in what position are your fingers in the morning?
Stef
[56, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]
The pain is in both hands in the morning. In general my left is far less painful than my right I'm assuming because I'm right handed, but my left hand actually has more physical changes and deformation than my right. The stiffness and pain is in my left hand just not as badly, and in the morning both hands are in my natural resting "comfortable" position, which has changed drastically in the past year or so. Originally both hands were comfortable at a fairly neutral straight position but my left is now most comfortable when it looks like my hand is making almost a C shape with curved fingers. My right I'll attach a picture, my resting position and what I wake up with is like the C position but with my pinky and ring finger curling up more. Straightening from these positions sometimes hurts but is not impossible, it just feels like my fingers are slightly "spring loaded" if that makes sense, and making a fist hurts the most. Thats why its strange because in dupuytren's a contracture would be responsible only if I was unable to straighten those fingers. I can put my hand flat or straighten my fingers no problem its just when I relax my hand it bounces back to the default position.
My biggest pain are joints where my fingers meet my palms, center of my palms, and the middle joint of some of my fingers. In the center of my right hand is a large nodule with the diameter of maybe a dime that is a major pressure point for pain. There is a cord that is barely visible that I've had forming slowly for maybe a year but never thought anything of it until my diagnosis in April, it runs through my palm to the large nodule under my middle finger joint. I can feel what also feels like maybe a cord running next to the other starting to form, running to my index finger. I have a nodule in my left hand in the same spot as my right hand in the center, but it not painful and not nearly as large.
I've considered splinting at night because I tend to close my fists as I'm falling asleep, but I always wake up in the "default" position I described above. In the default position my dimples and nodules are barely noticeable if at all. I'm assuming this position is related to holding a computer mouse, because I'm frequently on the computer.
I just wanted to add, I've noticed recently I have swelling that extends to the top of my hand. The area between my fingers on my palm side is always puffy and swollen but it is actually visibly noticeable on the top of my hands, like swelling between my knuckles and when I press there it is doesn't feel normal. I looked at my boyfriends hands and it's not something he has. I'm wondering if all this swelling in my hands is putting pressure on local nerves and tendons, etc. I work in a lab and have very small hands, to the point where the fingers on gloves are way too long... Sometimes my hands swell past a size small glove, but wearing a medium means the fingers are so long I can't function. I don't have any other swelling anywhere that I've noticed, and I don't know what could cause inflammation this painful, yet doesn't show up on standard blood work. Inflammation always leaves some sort of evidence but my body is trying to pretend my hands aren't always blotchy, bright red, swollen and painful.
What do you do working in a lab, with your hands. I’m wondering if you have some sensitivity that causes joints or tendons to react with use or overuse, or some substance, as well as the DD. The puffiness palm side, small pillows below the fingers is often reported by others with DD but less so the overall swelling. Have you tried compression stretch gloves usually sold for arthritis? That and neutral splinting overnight may, may not, help. Any noted sensitivity or change to particular food types? It’s hard to see what we can do to help other than advise on the course and treatment system for DD and throw out suggestions that may not be appropriate, and I would want a physician to investigate with a bit of self diagnosis and research.
Hey Mine started with a sore spot on my palm, I thought I had pinched it doing yard work. Then I had a nodule. As the nodule grew, so did the pain. I had pain that kept me up at night. My whole arm would ache for hours on end. Heat helped relieve the pain. I still have pain when I overdo it. Like today. Yesterday I worked on installing a hot water dispenser under my sink, I had to cut a copper pipe and that gripping and twisting motion set it off. I wear a bicycling glove that protects my palm yet is cut off on the fingers when I drive, mow the lawn, or typically do long term work that involves touching my palm. That helps a lot!
I know others on this forum have talked about having pain.Thanks to inversion table.
Hello all, this is my first time on here. I was just diagnosed with DD and I also have intense pain that runs from my right hand up to just below my elbow. It often wakes me up at night. I work extensively with my hands on an assembly line. I wear a good wrist brace at work which helps as well as taking Advil/Tylinol intermittently. I can only last for 3 or 4 days before the pain gets to be too much though.
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