White fingers in the middle

[Rudiguer]

Why are my fingers white in the middle? They are not even cold. Has anyone experienced this? Than you very much.

[Lula76]

Yes! Do you have a diagnosis? I was diagnosed with lupus but my hands are terrible - one minute white and numb with Raynauds and the next burning up, red, itchy and swollen with the white knuckles exactly like yours. Was told it's just eczema but I don't buy it one bit. Feel like there is a lack of medical professionals who can look at the whole picture. Would be interested to hear if you know what is wrong with your hands and how they are being treated? Thanks L x

[Rudiguer in reply to Lula76]

Hi Lula76,

Thank you very much for your response.

I was told that I have Raynauds although my rheumatologist did not do any tests. In August I was diagnosed with limited scleroderma but before this my dermatologist thought I just had contact dermatitis. According to him I had nothing and I just had to use a normal cream to hydrate my hands! My GP has asked me to show my blood test result to the dermatologist in my next appointment. I have tried many creams for the last 3 years but my hands seem to be getting worse every year. They look swollen to me, they are often itchy and I have constant cuts all over my hands, even little white blisters that are very itchy and release water when I press them. My hands tend to go numb at night. At the moment, I am using Doublebase Gel and Aquadrate but they don't seem to help either. The rheumatologist says that unless I improve circulation my hands won't recover so he prescribed me Nidifipine.I have not started taken it yet because I am worried about the side effects and I want to discuss treatment with my GP. I also have an underactive thyroid. I am going to be seen by a scleroderma specialists in February who is going to do a capillary test. I am not very impressed with any of the specialists I have seen so far so I am hoping that the scleroderma specialist is better. I am currentlly experiencing quite a lot of pain in my finger tips as well as in my chest. Do you feel pain in your hands too?

[Hidden in reply to Rudiguer]

Oh dear it’s horrid when we get so many conflicting diagnosis and strange symptoms. My fingers usually go white in the middle rather than tips. In my case it’s because my Raynaud’s is a mild response to quite a severe small fibre neuropathy - which I’m told relates to my confirmed Sjögren’s. I’m on the maximum dose of an immunesuppressant called Mycophenolate and under the Scleroderma team because my bloods pointed this way although so far Sjögren’s has been my main disease.

I’m Hypothyroid too. Sometimes it happens when it’s not that cold - even when it’s warm. But it’s usually because I’m flaring and my core is cold. My nailfold capillary test, in April of this year was normal.

Last winter I had little blisters on my finger tips and much pain but this year they have gone numb. So my guess is that my connective tissue disease was responsible for bringing pompholyx eczema into my tips in response to cold. I’ve had a couple of tiny semolina blisters (pompholyx) on tips this year but no pain or itch - due to the tingly numbness.

I think the answer is that these connective tissue diseases can presently uniquely in each of us and the rules that dermatologists often seem to apply to the normal population often don’t seem to apply to us. We all have our weak spots and, as a kid I had severe pompholyx with atopic eczema - so where my tissue is most fragile and exposed it sometimes returns.

Try to research and find your own explanations for things and you will gain confidence to work with specialists - who may not know enough about rarer autoimmunity to recognise your unique presentation of connective tissue disease.

[Lula76 in reply to Rudiguer]

Hi - so sorry to hear about your struggles! Yes, your description completely fits my own and you could be describing me. If I wasn't so battle worn, I would seek a second opinion but I feel that no-one is really that interested! I hope you have success with your scleroderma specialist - please keep me posted on how you get on. Wishing you a Happy (pain free!) Christmas and let's hope the new year sees you get the support you are in need of. All the best x

[Rudiguer in reply to Lula76]

Thank you for your response Lula. The hands pain can become very bad but at the moment the worse thing is this constant feeling of tiredness. I have a six year old daughter and work full time at a secondary school. I constantly feel exhausted. I don't feel like doing anything at the weekends and even cooking makes me tired. Are there any medicines to help with fatigue? Its almost as if my body is dead sometimes. My arms and my legs feel heavy and I get very tired when I stand up for an hour or more. I am also very concerned about my regular chest pains which started a few weeks ago and are still happening. In my last appointment with my GP I asked to be referred to the Royal Free but my GP seemed reluctant and said he had to wait to receive the information from my rheumatologist, who had not written to him a month later after my appointment. I was sent a copy of the letter my rheumatologist sent to my GP last week but I don't still know whether my GP has finally referred me. He even suggested that being seen by different specialists can be complicated as they can offer different treatment. I said that I wanted a second opinion. I will try to see him this week to check that he has referred me as I have the feeling that he has not done it. The frustrating thing is that you need to wait 2 months to see my GP unless you get an emergency appointment!!!! So I will be at the surgery at 8.00 am to be the first one otherwise, there won't give me an appointment!!! I will keep you posted. Take care.u

[Lula76 in reply to Rudiguer]

Sorry to hear all this Rudiguer - fatigue is awful and it sounds like you really have your hands full. It sounds like you need to really fight your corner. Absolutely go to the GP and Chase up the second opinion and refuse to be fobbed off. If you don't push it won't happen so take a deep breath and gird yourself to get tough. I wish you all the very best with it. Let me know how you get on x

[Hidden in reply to Rudiguer]

Fatigue is dreadful for many with connective tissue diseases but the Scleroderma doctor told me Sjögren’s is the worst for it.

I’ve self referred to the OT at my hospital and he is going to help me to pace better so he says. info.sjogrens.org/conquerin...

[Hedsmummy in reply to Rudiguer]

Have you got any type of hypermobility at all? I wonder if you’ve ever been assessed for a connective tissue disorder? Helpers danlos syndrome has a strong link with the conditions you’re mentioning and also can cause severe debilitating fatigue x

[frillyhilly]

Hi, I just realised mine are like this !

I was diagnosed with Primary Raynaud's in 2002 by a "Rheumy". Initailly I had two visit's - at the first one he told me I had Raynaud's and then he did blood tests to see if I had any underlying conditions. At the second visit I was told I had Primary Raynaud's (I was fortunate as there were no underlying conditions). I then saw him on and off for about 2 years to see how my condition altered.

I'm so sorry you are being messed about so much. In an ideal world your GP should sit between the various specialists and make sure you get a proper diagnosis.

My hands are not as bad as yours but they do get very dry (and crack). This may sound silly but I use "hand & nail" cream rather than "hand" cream and slap it on every time I wash them - I find this far more effective than Aqueous Cream, etc. I use Tesco own brand and Yardleys. I find changing creams regularly - eg I use Yardey in the morning. Tesco later in the day - makes a huge difference to the efficacy of the creams. I also use Hydrous Ointment (this is quite heavy) which is oil based and 3M Cavilon which is great for dealing with "Breakouts".

I also do hand exercises, wear my sleeves long (and about half way down my hands when it's not summer) and I have some silk gloves from Patra

patra.com/Search/gloves

which don't snag the skin and I find I can do most things when wearing them. I think I actually wear silk glove liners just as gloves about the house. I take a supplement called Rutivite as well:

powerhealth.co.uk/search.ph...

When I first tried this I used it for 1 to 2 months to start with, then stopped. My symptoms got worse again within about 2 weeks. Been taking it ever since 2008.

I hope you get a proper diagnosis soon. Don't forget that the treatments do not have to be specialised to help - I was lucky that my Rheumy and my Physio pointed this out to me early on - when you are being offered medical solutions all the time, it is easy to forget this - believe me I fell into this trap to start with. All the best, N.

[frillyhilly]

Hi again, just another thought. My husband gets sore, broken, dry hands from gardening and being outside. He has found the following very effective:

Neutrogena Norwegian Formula

O'Keeffes Working Hands Hand Cream

Burt's Bees Hand Salve.

All the best, N