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

Postby *Lisa* » Tue Feb 25, 2014 4:11 pm

Hi,

Doctors should be ruling out other conditions and the main one is Lupus. It does depend on your symptoms to what they also rule out but fibro can mimick that of many other illnesses.

This is why bloods are done as most auto-immune conditions and inflammitary conditions will show up when fibro does not.

If MS needs ruling out then an MRI will be done.

In the beginning i was not so tender, i had severe muscle stiffness and joint pains and very few tender points but was still diagnosed fibro. Now many years on those tender points are very active! :shock:

They found that my CRP inflammation levels are extremely high and diagnosed boredaline Lupus and i am going to be seeing the rhumatologist in May to test my joints and i shall bring up the Lupus again although my ANA is negative. ANA positive is a strong indicator that Lupus or an auto-immune condition is present along with needing 4 out of 11 symptoms needed for a Lupus diagnoses.

CRP also tends to be high in Lupus.

I also have many related condition to Lupus that being reynauds/angeodemia and hives plus joint pains etc... but as my ANA is negative and im not scoring 4 out of 11 im sitting on the fence so to speak. I have many related symptoms and related conditions but nothing exactly that pin points full blown Lupus.

Lupus and Fibro do tend to go together and theres many members with both.

I have anxiety and in the beginning my symptoms were put down to anxiety for many years until the physio wrote to my GP saying that this chronic stiffness is not right for a person my age and that i may fit the diagnoses of fibro. Thats when the anxiety label went as i was refered to a consultant and he diagnosed fibro.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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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
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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 *Lisa* » Wed Feb 26, 2014 12:13 pm

I have been told looking for why the CRP is high can be like looking for needle in haystack :shock: i think its a piece to a puzzle.

Milly how high were your CRP levels?

I have been told mine maybe to do with being overweight :-? so iv lost 30lbs and hopefully many more before my next bloods to see if it goes down to eliminate that.

I did say to the rhumi that it was high and he brushed it off sayin it could be the obesity but then after another set of bloods i got a letter saying its too high and need my joints tested :crazy: i suppose being overweight doesnt shove the CRP to the range im in :dunno:

I hope your partner is ok! thats awful but good that a doctor has finally listened and hes getting tested now.

Sitting on the fence i have accepted and hopefully nothing does appear but i have so many symptoms that i havnt told my GP all of them so hopin the rhumi may have more time to go through them. My skin is becoming increasing dry and itchy plus its all shiney :crazy: not a clue why but something i can bring up also but nothing severe enough to see my GP as its just something else to the list :roll: :lol:

I do have many associated conditions to fibro that may put my inflammation levels up but no doctor has spoken to me about it. Seems as soon as your diagnosed with fibro the doctors dont investigate properly anymore as every thing get put under the fibro umbrella.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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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
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Re: Possibility of Lupus? Advice/stories really welcome!..

Postby *Lisa* » Fri Feb 28, 2014 3:55 pm

:yikes: that it sky high :yikes: im glad to hear the steroids are helping.

Makes my CRP levels at 31 that fall in the high bracket seem like nothing :crazy:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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