Hot red itchy bumpy rash and numbness and tingling??

Allergies, blood and immune system
1

Does anyone else suffer from skin conditions as a result of S's? For the last 5 months or so I've developed an awfully itchy rash on my shins and my neck. It's the most itchy rash ever. The skin seems dry and looks similar to eczema but it isn't that. I've tried e45 cream, eurax, hydrocortisone and xeroderm but nothing has shifted or even eased it. I had eczema when I was little but never like this and never in the areas...was normally on the inside of my legs or behind my knees. I haven't had exzema since and my go doesn't think it's exzema. Am waiting to see a dermatologist but just curious if anyone else has suffered this as part of S's too? 

Also, the last few weeks I've noticed increased and more sever numbness in down the outside of my legs or in my feet if I sit down for half hour or more. I also get it in my hands and arms  if I keep my arms up towards my chest (I tend to fall asleep with my hands across my chest when I lay in back) - now this does not seem normal to me either but I'm really feeling like I should get it checked. I also get it if I use my elbow to lean on when sleeping. Does anyone else get this or am I turning into a hypochondriac? Please help

2

Kate, I can't speak to the eczema, I've never had that. All I've had (and still have) is recurrent outbreaks of fungal skin infections that may or may not be connected with SS. It's probably not the same thing - the distribution sounds wrong - but fungal infections do produce a hot, red, itchy rash.

However, peripheral neuropathy is a well-known feature of SS. I had exactly that arm thing you described for years, and sometimes woke in the night with one or other leg completely numb from the knee down. And one of my earliest symptoms - nearly 20 years ago - was an unbearable tingling sensation in my right big toe. The toe eventually became almost completely numb and stayed that way for 10 years, with the development of an excruciating electric-shock sensation in the skin over the nerve leading from my big toe up the inside of my instep. (I dreaded washing or drying my foot for years.) My doctor wasn't interested - just said it was down to old age. I was 53 when it started.

Then the weirdest thing happened. From one day to the next the numbness and the electric-shock sensation vanished completely. Just like that, and after 10 years! I'm a former nurse, specialised in neurology, and I "know" long-standing nerve damage like that can't disappear overnight. But it did. And then it got weirder...

That same night, I was woken by a terrible tingling... in the other big toe. (I'm not making this up!) That moment, at 3 in the morning, was when I fully understood the psychosomatic aspect of auto-immune diseases. After all, it is a form of self-destruction - the body turning on itself - and I've long known I had a self-destructive element in my psychological make-up. I put the light on, pushed off the covers, sat up in bed and announced out loud to the offending foot: "No, we're not doing this!" Then I tried to get back to sleep. The sensation cleared up after a couple of days and never came back in either foot.

In the five years since then I've been in almost total remission. Before that I had dry mouth, dry eyes, arthritis, Reynaud's syndrome, carpal tunnel syndrome, as well as the peripheral neuropathy. All I've been left with now (at age 70) is an underactive thyroid, for which I take thyroxine, and the occasional rare attack of dry mouth or sticky eyes.

You're not turning into a hypochondriac, but you're on the right track in suspecting you might somehow, at some mysterious, inaccessible level, be influencing your own symptoms. Just hang onto that thought and it might work in you. Psychosomatic illness is not imaginary and it's nothing to do with being a hypochondriac. It's way more subtle than that. People die of psychosomatic illnesses. Just let your rogue immune system know you're on its case and you might be surprised by the results!

3

Hi kate,

I too have had awful itching for the past year. Started on my shins, no rash, just redness, and also have what I've been calling peripheral neurapathy in my toes, with a tingling feeling around my left hip when I've stood still for too long. GP thought the itching was urticaria, but when 3 different antihistamines (double dose) didn't bring any relief, she referred me to dermatology. I've tried 3 different steroid creams and various (prescribed) emollients, to no avail. Itching gets worse at night and when I'm warm. Dermatology now think it is caused by some kind of vascular disease which would also explain the numbness and tingling. So while I wait 8 more weeks for another appointment, I'm wearing flight socks on the nurse's suggestion. I'm not saying this is what is wrong with you, but it is just a thought. My itching has spread up to my stomach and back, but is not as bad as that in my legs. Good luck.

poemsgalore x

4

Hi Kate,

Yes, I too have had a dry scaly painful rash down my spine which was looked at by a couple of GP's and a dermatologist - all had no clue what it was and just said it looked like eczema.  It appeared after I pulled my back gardening.  I was actually seeing the dermatologist at the time for severe dry eyes and was later diagnosed with sicca syndrome (other name for Sjorgens) and she didn't put two and two together with the rash and say it was connected.  I am also currently battling a severe infection on my scalp with lots of hair loss - GP thinks it's fungal but 7 weeks of terbinafine tablets haven't made any difference and it is actually spreading.  I'm having to go private for a referral next week as an urgent NHS referral would be 3-4 months wait.  the pain from this infection is like acid weeping through the pores in the scalp then crusting/flaking which comes away with the hair attached including what looks like the root.  I have been suffering sicca symptoms for over 3 years and am still trying to make sense of it.

5

Interesting that so many SS sufferers seem to report fungal skin conditions, though the doctors insist there's no link. I've had just the same sore, itchy, weeping lesions as you have, Christine, though not on my scalp. Every few years my doctor prescribes some kind of systemic anti-fungal, which clears everything up (or at least makes my toenails look prettier!) but it all comes back again after a couple of months and I'm back asking him to prescribe anti-fungal and cortisone creams again. He always gives in, especially when I show him the evidence, but he's reluctant to prescribe stuff because he insists that fungal infections don't recur once they've been cleared up.

I think we sufferers know better!

That hair loss isn't due to an under-active thyroid, is it? That's another symptom of SS. I hope you've had the right blood tests. I lost a lot of hair before I was finally diagnosed and put on thyroxine. The lost hair will never grow back, but at least I'm losing it at a much slower rate now.

6

It's all very odd. I used to have such lovely skin. New I feel like some sort of scaley creature.  I too suffer from.  Hair loss, u had my first bout of alopecia 14 years ago (at the tender age  of 20) and no cause was found despite numerous blood tests over the years. I think its all part and parcel of my concoction of conditions but I'm very lucky in that mine grows back and my skin isn't affected - but any lady having to deal with bald patches (especially when others see them and wonder what they are) is a task in itself. I tend to make jokes out off all of my little 'problems' now and let others laugh with me. If you don't laugh you WILL cry..been there many times recently. 

Thank you all for your input with all of this. It's such a learning curve. smile

7

Had a couple of hospital visits since my last post re fungal infections and hair loss.  waiting for test results as to whether I might have Lupus, not got thyroid problems as those BTs have come back OK.  However, good news is  my hair is starting to grow back on the first bald patch, still have inflammation on scalp but being treated with a steroid gel that seems to be helping.  It's a really distressing thing to deal with and stress doesn't help people who suffer from auto-immune problems does it?  Reading up on it I'm amazed how many women suffer from hair loss - it's like a secret taboo!  good to know your problem is slowing down - hope it gets better for you.

8

I've finally got a diagnosis for my itching. I have two skin conditions, Nodular Prurigo and Lichen Simplex. My dermatologis just gives me steroid ointments and emollients which don't seem to be helping much, so I'm hoping I will be given immunosuppressants.Hope your dermatologist can help you as there's nothing worse than constant itching.

9

Hi there,  i also get awful dry skin manly across t/zone of my face and ichy scalp as, not keen to use meds fir problem,  so use nature way,  derma spray,  bit expensive but pure and natural, made from plants. i just spray on affected area and leave it to soak in,  no rubbing into face like most creams they also make a hair shampoo also works for me 

10

I sort of have a diagnosis now, but the rash wasn't at its worse when I saw the dermatologist so he wasn't 100%- although he did say I could have very mild form of psoriasis. It's either eczema or psoriasis. Either way neither can be treated but I now have a concoction of washes, creams and steroids to use when it flares. Hopefully I can keep it at bay now. :D