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Just diagnosed - where to start?
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BritAussie 

BritAussie 
Just diagnosed - where to start?

Hello - I've just been diagnosed with DD after feeling a lump in my palm last week. Due to covid I sent some pictures to my Dr and had a telephone consult where she confirmed that is what it is. I have a few queries I'm hoping people can help with:-

1. I don't really want to be visiting hospitals at this time and a referral via the NHS will probably take months if not years anyway, but I do have private medical insurance. Should I be trying to get a consult with someone in the near future if possible?

Edit: I definitely have curvature of my right hand in relation to my left hand, but to be honest that appears to be on all fingers, not just the little and ring finger.

2. At this stage I just have a lump on my right palm and the beginnings of a cord, though that comes and go as to how visible it is. Nothing on my left palm at this stage, however in the past I have felt pain/ache in both hands which at the time was difficult to describe - definitely under the skin of the fingers, not necessarily the bone but surrounding that. I have also found for some time that if I grip something for a while i.e. vacuum hose, garden tool, that my hands cramp up. Are those common early symptoms for people

3. At the moment the lump is quite itchy and my hands and wrists generally feel quite achy and tingly - the pad of my right thumb was very tingly yesterday (almost vibrating) but that isn't as bad today, and I don't think thumbs are usually affected?

4. I have always suffered from a stiff neck/shoulders (its where I carry tension), but my left shoulder / upper back is particularly bad at the moment. I'm wondering if it could be anything to do with frozen shoulder, but am not sure where the pain is normally? Mine tends to be at the top of my back - definitely near the shoulder, but not at the front / right where the arm joins. Maybe I should look in the FS forum instead for info?

OK - I'll leave it there as realise that's a lot of questions. This foruum looks as though it will be really helpful so I guess its a case of just reading through posts. Can anyone recommend any other good articles/websites/groups that I should join?

Thanks in advance to anyone who might comment.

Edited 01/27/21 15:16

wach 

Administrator


wach 

Administrator

Re: Just diagnosed - where to start?

Hi,

what you are describing, the itching and tingling in your hand might well be the start of Dupuytren's but it might also be something else. The fact that all fingers tend to curl a little actually sounds like something else. Therefore a firm diagnosis would be the first thing before starting anything else. Getting scheduled in a hospital might be a little difficult due to Covid. How about a practitioner?

I presume you are located in the UK? If so, you might check the website of the British Dupuytren's Society https://dupuytrens-society.org.uk/ . They are listing doctors familiar with Dupuytren's, maybe one is close to where you live.

And, not to forget, it is always useful to familiarize with Dupuytren disease. This website hosts a wealth of information. You migth start with Disease in the above menu and keep reading from there.

Wolfgang

BritAussie 

BritAussie 
Re: Just diagnosed - where to start?

Thanks for the response - I have read quite a few articles on DD over the past few days but haven’t been able to find many “real peoples experiences”. But I will check I have read all the links above on this site.

In terms of curvature of the hand - I did manage to slam that hand into the edge of a counter top (like stubbing a toe) some months ago so am not sure if that may be one reason - or if the curvature of the fingers you’d normally expect is making the whole hand look curved. I could upload photos if that would help?

spanishbuddha 

Administrator


spanishbuddha 

Administrator

Re: Just diagnosed - where to start?

Hi, we have peoples experience of treatment on the website and forum. One difficulty is the progression of DD is different for just about everybody. Some gets nodules and some symptoms and that's it, others get the the full whack, contracture, frozen shoulder, LD in the feet. I usually suggest keeping a photo record, say monthly, in the early stages so you can record symptoms and physical changes. This will help track rate of progression if you decide on early treatment of RT.

To answer some questions

1. Most GPs and hand surgeons will say come back when you have a contracture. The only useful early treatment is RT and it's difficult but not impossible to get that on the NHS. There are two doctors providing this privately in the UK. You talk of curvature but is that a contracture due to a cord? A contracture cannot be straightened by yourself with, say, the other hand. You mention nodule(s); any pitting? A photo of the palms and fingers might help.

2. Some symptoms include, pain tingling, itching, soreness when pressed, strange feelings under the skin. Any family history?

3. Thumbs can be affected usually by a cord in the palm close to the base.

4. There are tests for frozen shoulder, try reaching up behind your back from below and above. However there are a lot of other conditions that can cause shoulder pain. This diagnosis is best left to a physiotherapist. A frozen shoulder usually means just that, fibrosis limits the shoulder movement preventing you from reaching up.

As well as ourselves https://www.dupuytren-online.info/index.html]The BDS is a another good resource and has a Facebook page too. They have a page on risk factors https://dupuytrens-society.org.uk/information/risk-factors/ Familiarise yourself with the evidence based treatment options, RT, NA, surgery of various degrees. That's it! Although there are clinical trials for other treatments. And there are other options too, anecdotally that people say help them, but keep a grip on your purse or wallet pursuing unproven cures: massage, magnesium, vitamin E, hot/cold soaks, IR light, splinting, and so on, you can read about them on the forum or FB. Protect your hands in the kitchen, garden, DIY, sport, etc, as trauma definitely aggravates DD.

Best wishes

Edited 01/28/21 13:05

BritAussie 

BritAussie 
Re: Just diagnosed - where to start?

Thanks very much for your response - I'm hoping the attached pictures might help (assuming they upload in the pdf) to explain the 'curvature' of the hand as a whole?

Edited 01/28/21 16:15

Datei-Anhänge
Palm of Right Hand.pdf Palm of Right Hand.pdf (16x)

Mime-Type: application/pdf, 174 kB

Narla 

Narla 
Re: Just diagnosed - where to start?

Hi,
I am in the early stages of DD having been diagnosed (over the phone) early last September. I have one nodule on the palm and a cord travelling up my smallest finger on the dominant hand. My doctor said he would refer me to a musculoskeletal clinic, I've heard nothing as yet, I think it's been forgotten, but I haven't chased it up as, like you I want to keep away from hospitals at the moment if possible!

For 1 month now I have been massaging with magnesium oil several times a day, and have been exercising my hand (got the exercises on the internet) I have also returned to piano playing after many years, thinking the stretching will help my hand. I also wear a splint overnight, on the smallest finger to discourage any bending. I can see a definite improvement, the nodule has reduced and is less painful, and the cord travelling up my smallest finger has softened considerably. My aim is to defer if not avoid surgery, so am working hard to slow if not stop the disease progressing. I am an advocate of massage for many conditions anyway.

I know nothing about frozen shoulder, except I believe it can be connected with DD. In your position I would be looking at further diagnosis re that. Keep looking at this forum, I have found it very helpful. Good luck.


Narla.

spanishbuddha 

Administrator


spanishbuddha 

Administrator

Re: Just diagnosed - where to start?

BritAussie:
Thanks very much for your response - I'm hoping the attached pictures might help (assuming they upload in the pdf) to explain the 'curvature' of the hand as a whole?
I see evidence of nodules and pitting in the palm of the right hand, so possibly you have a cord developing. The best test is via palpation from an experienced doctor (hand surgeon), but they will say come back when your hand or finger is bent beyond a certain amount.

An experienced radiologist, experienced in treating DD, may also offer advice, treat now or wait. I believe Dr Shaffer and Glees will consult for free (?) but given current circumstances may not provide an in-person consultation, you would have to ask.

Start that log/record, usually there is time, several months, before a decision has to be made. Most patients, myself included do not like 'watch and wait' but it's a perfectly valid and useful option. Useful to gather symptoms as evidence, and research your options which you seem to have started. Don't seek early RT just because you want to be pro-active, it doesn't work like that, RT is only effective at certain stages and carries risks, and cannot be performed over and over. See ProfS opinion on early treatment https://www.dupuytren-online.info/Forum_...1559373063.html Also review the risk factors and consider if any apply to you and can be changed, probably not, except no hand abuse.

The curvature of your right hand may be natural for you, are you right handed? Or is there tightness originating from the palm that you had not previously noticed? I do not see a cord from the photo, but possibly a typical DD soft 'pillow' in the palm at the base of the fingers. Are your joints painful? Any rheumatism or arthritis? So many possibilities besides DD.

Best wishes

Edited 01/28/21 18:55

BritAussie 

BritAussie 
Re: Just diagnosed - where to start?

Thanks for both of the above answers (well all answers so far!). I will have a good look at the website/chat over the weekend and look at referral options - I'm on Exmoor and I'm sure there is a surgeon in Taunton who specialises in DD. Yes, I am right handed - on the photos to me it actually looked as though the middle finger was bent forward, but can't see anything in the way of a nodule/cord that would affect that. I do appear to have what I assume is the start of a cord running from the module back towards the wrist for about a cm. It isn't very prominent in the photo and seems to come and go as far as being able to see it each day.

Lots to learn, but I agree that keeping a record will be helpful - and was thinking I may do that with the lefthand too as I believe it's quite common to have it in both hands. I also wonder if I have very mild knuckle pads, but that may just be because my hands are so dry! I was horrified by how they looked in the pictures so need to get some cream on them straight away. I do suffer from asthma so take inhalers, and believe that thins the skin a bit?

Yes I will look at the risk factors - i do like a drink I have to say, but the Dr I spoke to on the phone said that they have now ruled that out as a factor? Who knows? I guess its a question of weighing up the pros and cons of everything.

spanishbuddha 

Administrator


spanishbuddha 

Administrator

Re: Just diagnosed - where to start?

Narla:
Hi,
I am in the early stages of DD having been diagnosed (over the phone) early last September. I have one nodule on the palm and a cord travelling up my smallest finger on the dominant hand. My doctor said he would refer me to a musculoskeletal clinic, I've heard nothing as yet, I think it's been forgotten, but I haven't chased it up as, like you I want to keep away from hospitals at the moment if possible!

For 1 month now I have been massaging with magnesium oil several times a day, and have been exercising my hand (got the exercises on the internet) I have also returned to piano playing after many years, thinking the stretching will help my hand. I also wear a splint overnight, on the smallest finger to discourage any bending. I can see a definite improvement, the nodule has reduced and is less painful, and the cord travelling up my smallest finger has softened considerably. My aim is to defer if not avoid surgery, so am working hard to slow if not stop the disease progressing. I am an advocate of massage for many conditions anyway.

I know nothing about frozen shoulder, except I believe it can be connected with DD. In your position I would be looking at further diagnosis re that. Keep looking at this forum, I have found it very helpful. Good luck.


Narla.
I take piano lessons and my hands have definitely improved in stretch and flexibility, since starting piano several years ago now, despite the DD. You do have to be careful not to overdo it regarding stretches or poor technique otherwise you can get joint and wrist pain that takes a while to overcome.

Narla 

Narla 
Re: Just diagnosed - where to start?

Oh I am being sensible about it, and careful not to overdo exercises etc.

Thanks.

Narla

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