New symptoms-been referred back to rheumy

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New symptoms-been referred back to rheumy

Postby quietone » Wed May 28, 2014 8:44 am

Hello everyone!

I used to have an account on here when I was first diagnosed a few years ago. Back when I was first diagnosed things were pretty bad. I had terrible pain, my costochondritis was awful, and I had no idea about my gluten intolerance.
Since then I've worked really hard on taking care of myself. I cycle lots and do regular yoga. In many ways I'm fitter than ever. My fibro flares are rare, and although I am still very tender to the touch things have been better than I could have hoped.

Last year I started losing my hair. I now have a huge strip of white hair and bald patches up the back of my head. I assumed it was my coil, which I had removed, and got on with my life.

Things have got worse recently. I started with a faint rash on both arms last year, and quickly realized it was the sun. When I remember I keep covered and use lots of suncream. I got sunburnt on the neck last week where I missed the suncream (a 2cm strip down one side) It came up in lumps, followed by scaling of the skin, and then proceeded to swell up and spread. I ended up in the out of hours centre where they said it was an inflammatory response.

My GP is concerned that there could be an underlying cause to the hair loss and skin sensitivity, and has referred me back to the rheumy. I'm unsure what is going on. Things like lupus are running through my head, but mostly I'm wondering what next. That's the thing with fibro. It takes away any certainty and leaves you worrying about the future. It seems no matter how hard I try to deal with this there is always something else.
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Re: New symptoms-been referred back to rheumy

Postby Theresa34 » Wed May 28, 2014 10:14 am

Sounds like Lupus x Have a look up and see if it makes sense to you x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: New symptoms-been referred back to rheumy

Postby migrembe » Wed May 28, 2014 10:33 am

I wouldn't self diagnose, i would wait and see. FMS can cause all sorts of weird things. I am surprised that your Dr didn't test for Lupus at the beginning, it would show initially in a blood test as a high white count, so if you have had a blood test recently that was normal then it is unlikely to be lupus.

If you are on any medication including supplements - vitamins or minerals in the wrong dose can cause problems. You say you have a allergy to gluten, were you tested for it? If not then have some allergy testing done, it may not be that at all. If you have, then have you replaced in your diet whatever you have removed by not eating wheat products - besides the gluten. The skin sensitivity could be something missing or could be caused by some of the new anti-depressants.

Hope they find out what is causing it all and they sort it out for you, not knowing is awful.
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Re: New symptoms-been referred back to rheumy

Postby quietone » Wed May 28, 2014 11:55 am

migrembe wrote:I wouldn't self diagnose, i would wait and see. FMS can cause all sorts of weird things. I am surprised that your Dr didn't test for Lupus at the beginning, it would show initially in a blood test as a high white count, so if you have had a blood test recently that was normal then it is unlikely to be lupus.

If you are on any medication including supplements - vitamins or minerals in the wrong dose can cause problems. You say you have a allergy to gluten, were you tested for it? If not then have some allergy testing done, it may not be that at all. If you have, then have you replaced in your diet whatever you have removed by not eating wheat products - besides the gluten. The skin sensitivity could be something missing or could be caused by some of the new anti-depressants.

Hope they find out what is causing it all and they sort it out for you, not knowing is awful.


I'm not on any medication or vitamins. I got so fed up of tablets, etc, after my first flare that I refused anymore. As for my gluten-when I first flared they thought I had stomach problems and I saw a specialist for a while. He seemed to only want to throw pills at me, so I started working through possible dietary elements. Cutting out dairy made no difference. Cutting out wheat and gluten did the trick. Within 6 weeks I felt much better, no IBS, no pain. They offered to do further tests but I refused as I was done with tests at that point. I've stayed off it ever since. I have wondered if the coil caused any of this, but as my symptoms have remained since removal I can't be sure. I suppose a rheumy might shed some light on the matter.
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