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Discussion Starter #1
Hi All

I've had a very traumatic year with my husband being cruelly taken away from by cancer. This has caused me to flare quite badly - 5 months under hospital UV lights didn't do me any favours!

I can't talk to my GP about it - as he is putting everything down to this and associated stress, simply saying 'things will get easier, and then you'll start feeling better'. So I don't really want to talk to him about it.

Anyway the problem: for the last week I've had really bad pain on my left hand side, front and back, from the ribs under the bust down to my abdomen. It started by affecting my walking, which is always bad, but now the skin feels exceptionally tender and painful to the touch, when clothes rub on it, and when I move. I've also noticed that tingling and pins and needles I get in other places is worse - I should probably add that I've got severe spinal nerve damage.

Initially I thought it might be shingles because of the stress, but I haven't developed a rash.

I'm seeing my dermie tomorrow so will mention it to him, but I'd grateful if anyone else has any ideas, suffered from anything similiar, advice, etc...

Thanks in advance

Sammy
 

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Hello

This sounds very painful and what a pity you have such a dork of a doc. Of course stress can activate shingles and a host of other health problems but that doesn't mean they don't need treating
I would have thought that if it was shingles the rash would have appeared after a few days, like 3-4. It could be some other neuropathy. I don't know how they can tell if it is shingles when there's no rash or even if it's possible to have shingles without a rash. Not a very helpful response I fear. :)

I hope you can get some relief soon. Let us know how you get on.

Lots of Luck
Clare
 

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I developed shingles this spring after a series of flares I developed after my third rituxan treatment. The rash never did develop. I only knew it was shingles because of the pain that was the same as when I had shingles on the other side of my body the summer before. The doctor, my old gp, agreed that I had it, and gave me the valtrex. Actually the physician's assistant, now that I think of it. Not the most competant of proffesionals though, so who knows.
 

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Discussion Starter #5
Saw dermie yesterday - Karol you were right it's neuro! So I guess I'd better start taking the nortriptyline I got prescribed 4 months ago.

But some good news - I've been escalated to seeing proper docs who actually understand lupus! My diagnosis is SCLE but they're concerned with my history about it escalating to SLE and admit that I technically fit the criteria for this diagnosis. But they're going to repeat ANA, ENA etc as my health continually worsens and have said that because my case is unusual they're going to keep a much closer eye on me.

So some good news at last!

Thanks

Sammy
 

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Hello Sammy

I think the proper term is neuropathy :) I hope the amitryptiline helps you as much as it does other people.

I am glad that you are going to get more medical attention. SCLE is very often associated with a wide variety of systemic symptoms sometimes quite severe, although actual organ damage is supposed to be very rare. They should have been doing regular blood and urine tests anyway and be on the look out for sytemic symptoms What medicines have you been taking ?

Make sure they have tested for B12 and calcium deficiency, thyroid and diabetes.

I have an SLE diagnosis technically, simply because I have enough criteria, but I have been very lucky indeed and apart from arthralgia and fatigue the skin has remained the major disease symptom

Wishing you lots of luck - let us know how you get on please

:)

Clare
 
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