Possibility of Lupus? Advice/stories really welcome!..

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Possibility of Lupus? Advice/stories really welcome!..

Postby CloBeau » Tue Feb 25, 2014 3:04 pm

Hi guys,

So I have been diagnosed (ish) with Fibro since November. I had made several hundred visits to various GP's, some of whom thought it was Fibro, others wern't convinced.

I was then referred to a rheumatologist who was, well, brief to say the least. He asked me a total of 4 questions and performed the pressure point test. I kept trying to tell him that it wasn't THAT type of pain, and although my pain was widespread, it was a deep joint and muscle pain, not really affected just by touching my skin. I asked him if I should be tested for other conditions which have similar symptoms, like lupus, ME, MS, etc. (I wasn't anxious, I was just asking, because everything I'd read suggested that Fibro is more of a last resort diagnosis, rather than the first thing that should spring to mind.)
He got pretty short with me and said "You HAVEN'T got any of those, you've got Fibromyalgia."
Fair enough my hairy friend, except it doesn't add up: The pain is different, I've had eye problems such as uveitis, have reynaud's syndrome and the brain fog and depression I have could be attributed to lots of other conditions.

I don't mind being told it's fibro, but I think it's fair to get a picture and idea of what it isn't, first, by having more testing.

So, today I went back because I found a decent GP who listened and understood, and am booked in for tests to rule out Lupus, which was suggested ages ago, but never happened, despite asking several times.
I think because I have anxiety on my record, they assume I'm just "getting wound up," when in actual fact I'm perfectly calm. Anyone else think there is total bias and negligence because of medical professional's pre conceived ideas of them?

Also, have people on here been tested for Lupus, anyone here who has both?

Thanks for reading my massive rant, gentle hugs to you all, I hope you are all having a relatively ok day and managing to smile xxxxxx
CloBeau
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Re: Possibility of Lupus? Advice/stories really welcome!..

Postby CloBeau » Tue Feb 25, 2014 7:37 pm

Thanks for your reply, everything you've said makes sooo much sense.

How do you deal with that sitting on the fence stuff, do you just get used to it after a while? I think I'll have to work on that :)

I guess in a lot of ways the name of a condition isn't the important thing is it...I mean we suffer with a range of symptoms which affect us and what matters is how we try to manage them and find ways to shape what we CAN do around it to make ourselves as happy and comfortable as we can. You've given me lots to think about, thanks :)

Obviously lupus itself needs attention and of course the tests need to happen, but it's reassuring to know how much they are able to do these days to keep people sorted.

I really think the medical profession need to re think their attitude towards people who suffer with anxiety. Just today my partner went to see the GP for this leg/bulging vein and bubbling sensation which also causes major pain that he has had for months. It was suspected DVT surely! He has seen several doctors who all looked at his history (past anxiety over 2 years ago,) and put it down to that. Not one (until today,) even looked at his leg. I'm not kidding. It's a bulging vein you can see and a massive lump! The LOVELY doctor today has referred him immediately to a vascular specialist and told him to go straight to A&E if it changes. I can't believe it, it's total negligence!

Anyway sorry to rant!

Back to your message, you've given me lots to work with and I think I understand the connections and symptoms and how they relate across various conditions now.
I hope you're having a comfortable, calm and positive day :) x
CloBeau
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Re: Possibility of Lupus? Advice/stories really welcome!..

Postby millymoodoo » Wed Feb 26, 2014 11:08 am

Hi

I also have Fibro and Lupus!!! The Lupus was picked up and diagnosed as I had developed a mouthful of ulcers that wouldn't go away and were very painful. I had biopsies of these and it was something called Lichen planus which had developed because of my immune system not working so I had further tests and was diagnosed with Lupus. My CRP was very high but they thought initially it was raised because I suffer from crohnes disease but later diagnosed Lupus. So it is difficult for them to diagnose without many tests as a lot of problems we all suffer with fibro are actually inflammatory so CRP could be raised for several reasons.
Never look down on anyone unless you are helping them get up!!! When life hands you lemons, make lemonade!!! Everyday is a gift which is why we call it the present
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Re: Possibility of Lupus? Advice/stories really welcome!..

Postby millymoodoo » Fri Feb 28, 2014 9:41 am

Hi Lisa

My latest CRP was 109 which is very high they were wanting to admit me for a few days but I knew it would involve intravenous steroids plus the last time I went in for a couple of days I was in for 3 months!!!!! I already take 30mg prednisolone for crohnes disease and they told me to increase to 60mg which does seem to be helping.

Millyxx
Never look down on anyone unless you are helping them get up!!! When life hands you lemons, make lemonade!!! Everyday is a gift which is why we call it the present
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