Can you help??: I am thinking that I have... - LUPUS UK

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Can you help??

senorascully profile image
6 Replies

I am thinking that I have fibromyalgia symptoms - I know it's quite common with lupus.

What differences are there between the 2?

Is it best to mention this to my rheumatologist or go to GP first?

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senorascully profile image
senorascully
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6 Replies
moss profile image
moss

i aslo developed fibromyalgia 3 years ago, with fibro my sleep is of very poor quality and have pain on a daily basis, my memory is also poor. your right, fibro is a common 2 ndry condition. i guess unless you have a really good gp take it up with your rheumy

Jennie_103 profile image
Jennie_103

I was originally diagnosed with Fibro, now I have a diagnosis of Mixed Connective Tissue Disease (which apparently has a mixture of Lupus and RA stuff) thanks to a final blood test.

Rhemy said to move to MCTD and probably drop the Fibro diagnosis (lets face it, it mostly means "you're in pain and we don't really know why or what to do about it..." I'm not saying it's not a real diagnosis but I think it can often be obscuring something else, perhaps something that hasn't even been properly "discovered" yet.)

So try the Rheumy but don't be surprised if they are dismissive. You still get docs who don't "believe" in Fibro at all.

I agree with Moss that poor quality sleep is a big element, (for which they usually prescribe amitriptylene first) and also the tender points thing. Google it for a chart of the tender points and do your own count of how many you have! The general pain and fatigue could be either illness frankly. And, if you are in pain from Lupus, that's probably going to affect your quality of sleep. Which then increases your pain... Nasty circle that.

Good luck with it,

Jennie

NiksB profile image
NiksB

Hi

I had fibro for years before the mixed connective tissue and lupus like illness. I found most docs dismiss fibro it is a label saying pain but dont know what the cause is and its abit like the ME some believe some dont, so i think most people start with fibro and then continues to lupus etc. So I agree you might not get anywhere and the symtomes are similar to lupus. So good luck and i would suggest try your rheumy and then back up with your gp. They do run a mile if it sounds like you have done alot of research so id look but dont tell because i think thats when you get dismissed as a moaner (bloody cheek they try living with pain 24/7).

Good luck worth a try

Niks

Lupoid profile image
Lupoid

Speak to your rheum (your GP will probably look blank if you bring it up with them). Your rheum should then prod you in some specific points to see how you react. With Fibro the points will generally get the response of "do that again and you will feel the pain of my fist in your face..."

senorascully profile image
senorascully

Thanks for the advice.

Due to see Rheumatologist early March so will bring it up then.

Thanks for listening.

I do hope you get some answers Senso,,,, i too have Fibromyalgia and MCTD,,with Lupus thrown in too.It all is still confusing to me too,,i am newly Dx still last August.Hey when you go to see The Rhuemy,,take a pen and paper with you with any questions and answers you want to write down.I was amazed at how many things i nearly forgot by the time i got home!!Good luck.x

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