Such itchy finger tips - a Sjogren's thing?

[MAT51]

The latest direction that my symptoms are heading in is this way. In fact they are all so itchy at the very tips that I'm continually rubbing my fingers together or even scraping them on rough surfaces. My old doctor (I've come back for six months) conceded he was baffled as not much to see there - gave me some doublebase gel to moisturise themand advised me to take antihistamines and use Betnovate sparingly. I'm delighted with the moisturiser - it does the job but they still sting horribly and I have the usual pins and needles really badly in my hands too.

I am just not sure what on earth is causing these incredibly itchy, rough, slightly swollen finger tips. It really is driving me nuts?! Anyone else have this symptom?

[irish]

I have no idea, but my first guess would be neuropathy. The pins and needles feeling or burning feeling if a neuropathy. Many of us have that problem. It seems very feasible to assume that itching could also be another one of the issues that could affect the skin and nerve endings of the fingers. Have the doctors tried presecribing Gagapentin which is a med that helps decrease the neuropathy in just about every body part. Many people take that medication for the neuropathy of hands, fingers, feet, toes, legs, feelings in face, etc/ The list goes on. If that med doesn't work there is another medication called Lyrica that works also. It also is good to start with a lower dose and increase it as tolerated or needed.

I will add that itchy finger tips is not a common neuropathy, but we all have our things that ail us and drive us crazy. HOpe you can get some help. Irish

[MAT51]

Thanks Irish. I asked the GP is it could be part of my neuropathy but he looked uncertain and shrugged. I'm not his proper patient now so he's not going to start looking for me but when he looked it up on his screen I think Scleroderma flashed up but he moved on quickly as not wanting to get involved! Who can blame him I was his mystery patient for six long years! I was initially diagnosed with Pompholyx which was on inside of my fingers and spread to my palms. Now this is still present so I assumed it must be same but it looks different as no tiny bubbles and the doctor didn't think it looked like Pompholyx. He said wouldn't normally get this on finger tips. But bit of a coincidence I suppose so maybe eczema? It's like nettle rash because of the pins and needles in same places!

Re gaberpentin and Lyrica - I've tried both and Cymbalta - bad side effects to all.  I'm so desperate to end the itch that, if it carries on then I will ask for norotryptiline when I see the neurologist as that's the only one left I think.

[Jasper]

The itching is most likely related to neuropathy (if you have ruled out other more obvious causes).

I have periodic very intense itching of my feet, toes, or (rarely) lower legs. It is due to my peripheral neuropathy. I don't take anything for it. It is not constant, just periodic. It is an insane itch when I do get it. It usually eventually goes away as long as I do not scratch it. Occasionally, if it just won't quit,  I put a strong hydrocortisone cream on it and take Hydroxyzine Hydrochoride. I also place it up against something very cold or turn a box fan on it.

I hope you can get yours under control.

[MAT51]

Thanks Jasper. Yes I get an "insane itch" periodically on my scalp and a certain point in my back (the bit I just can't quite reach!) and I did read somewhere that this is a neuropathic itch that sometimes goes with cervical spondylitis which I do have. Indeed this is what made me wonder if this is neuropathic too because of the ramp in parasthesia in my hands and finger tips. I suppose this actually affects my daily life more though because I'm an artist and a writer and I'm finding it hard to use a keyboard with this electric itch in my finger tips. I also have an RA like pain in my knuckles each night so I do wonder about nerve entrapment from SS - I know it presents exactly like RA but with less swelling.

So I need to find out the cause in order to make sure it is treated effectively. Creams soothe the itch a bit so that's great, but they don't stop the electric current sensation I get 24/7, especially troublesome when writing or drawing or preparing food. And the itch is just a new added dimension and totally out different to my experience of eczema or nerve pain because it's affecting my finger tips and they are dryad swollen. I'm walking around rubbing my fingers together like I'm sprinkling salt and trying to resist the temptation of grating them on stone walls!

[Dawnmist]

I've joined a few groups on Facebook for people with Small Fibre Neuropathy - and itch is one of the common SFN symptoms. There was a link posted yesterday with an Interview done with Dr Anne Louise Oaklander (one of the major SFN research neurologists in the US) where she specifically discussed investigating itch caused by neuropathy. I thought you may find interesting reading: http://www.painresearchforum.org/forums/discussion/18553-patient-centered-research-conversation-anne-louise-oaklander

[MAT51]

Dawnmist I can only say wow! What an amazing Louise Oaklander is to have undertaken this research and pioneered a treatment therapy. I recognise so many symptoms that she's describing and the whole issue of many spinal doctors being men and many people with Tarlov cysts being women where it manifests as pelvic pain so isn't broached. I'm lying in bed here in the early hours struggling to sleep because of acute parasthesia and itch in my hands and wrists and nerve pain in my feet and ankles. And before the Tarlov cysts came the explanation of the cysts at the base of the root ganglia causing this terrible itch that is so bad it made a person scratch through their skull to expose their brain  - fascinating (but horrible!) - thank-you!

It is very depressing to me that this research is still relatively new and probably still won't have filtered down into neuro science practice everywhere though. The fact that it was so hard for her to get her research taken seriously because it was about itching says a lot. I recall listening to a radio programme about the history of associations with itching and psychology of the itch and it goes back as long as pain. As someone who has always had terribly itching of one sort or another I've never understood why it isn't viewed as a an equally serious type of chronic pain of itself? So this article gave me mixed feelings of fascination and delight with sadness for all those of us who have itched away our lives over the millennias. I can't watch anyone or any animal scratch away at themselves without overemphasising with them now!

My neurologist is a young-ish woman with a very good brain and a husband who lectures neuroscience. And yet she still came out with some of the most dismissive comments I've ever encountered. "You have propriception issues because your feet have some loss of sensation. This numbness is permanent - you will not recover your sensation you know - but it is not so bad and is not progressing so you are actually very fortunate no?!". And, when asked if this SFN of mine might not tarry more with Sjogren's than the RA I'd been previously diagnosed with;  "no you are..well.. not imagining your symptoms exactly ..but over thinking them..yes!". Finally she told me I looked too well to have a multisystem disease and told me she'd see me again in six months time (ten days now) but that I should postpone the appointment to a year if my symptoms hadn't significantly worsened.

So now, even with a solid new diagnosis of Sjogren's and symptoms that have worsened -  I'm expecting her to find a way of patronising me into a corner again!