LUPUS UK
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Fibromyalgia and Lupus

Hi everyone I’m a ‘Newbie’ so a big hello!!! I was diagnosed officially in 2011 with Fibromyalgia and ME but really had it in the late 90’s according to my old family GP. I have steadily got worse over this past year and have spent a lot of time in bed and indoors due to the fatigue and weakness. I have often wondered if I may have a some form of Lupus - I don’t have a rash on my face - only a very strong red border around my neck which gets inflamed with the sun etc?!!! How often would you get tested for Lupus - would the local GP get them tested if you asked?

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Hello my lovely,

I was diagnosed about 12 years ago with ME by a private practitioner. My GP told me it was in my head.. It all started after I had my tonsils removed and got a really awful infection. Fast forward to now and so have recently been diagnosed with UCTD, hEDS, fibromyalgia, query RA, Lupus and APS! I'm in a flare up at the minute and I'm knackered, emotional and really,really angry with my awkward, weird, bendy body. Try to get referred to a rheumy but choose carefully! Check them out first very thoroughly! Not every consultant diagnoses on blood results, there are some guys with sero-negative lupus.

Good luck and keep us posted.

C x

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Hi if you are worried about it it's as easy as getting a blood test done but with what you have you've probably been tested but no harm in asking

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Many thanks Charlie bear68 much appreciated!

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Where are you in the world? I can recommend a great rheumy if you're in the UK.

Good luck,

C x

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Hi I live in Scotland - North Lanarkshire! x

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I'm in Cheshire! But I go to London to see my consultant - worth every tiring trip! Keep plugging away and you will get the best advice on here - it's the best!

C xx

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Hi Breano,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK Contacts who you can chat with over the telephone. To download or request this pack, click here: lupusuk.org.uk/request-info...

It is common for people to be diagnosed with fibromyalgia during early stages of lupus. There are specific tests and criteria that need to be met in order to make a diagnosis of lupus, to find out what they are read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag... . It is advised to get tested for lupus when experiencing a flare of symptoms as this indicates higher disease activity.

Lupus presents differently in each individual therefore not everyone will share the exact same experience i.e. experiencing a malar rash. Light sensitivity is common in people with lupus, we published a blog article on coping with light sensitivity which you may like to read: lupusuk.org.uk/coping-with-...

Please let us know how you get on, wishing you all the best.

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Hello and welcome! I have a similar story... it took almost 20 years to get a lupus diagnosis and I only got it because I had a worrisome "rash" at my waistline that turned out to be lupus. I already had a diagnosis of fibromyalgia for some time and unspecified connective tissue disease is how they classified everything else. This despite the numerous health issues I've had over the years. The doctors were treating me as if I had lupus or MS "just in case" and what do you know plaquenil worked like a charm . They just refused to give me a diagnosis prior to the rash popping up because my blood work always came back normal...so I literally suffered for a long time. I left the doctor's office in tears many many days....do your research when picking a practitioner and blessings on your journey!

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Many thanks really appreciate.

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I got diagnosed with DDD first then came fibro after having 2 sun holidays and comeing back extremely sick I was at an appointment with my rheumy as soon as I walked in he said you have lupus apparently I had the text book lupus rash and symptoms

He followed up with bloods that showed lupus that was 12 years ago

I still have fibro and DDD but with the meds I'm doing ok

So get checked it's common enough to get diagnosed with a couple of illness before you finally get a lupus diagnose

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Many thanks Copdber! 👍

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I have been diagnosed with lupus for just over a year and it took finding the right specialist to do the proper blood tests to get answers. Having the diagnoses helped but it's scary at the same time. It's nice to know your not crazy though and the pain, tiredness, and mental fogginess is due to a disease. Thankfully you can get help thru the right treatments and the sooner you get diagnosed the sooner you can slow the progression of inflammation. My specialist is a hematologist and i'm truly thankful for her and the help i've received. Good luck to hopefully you get answers soon.

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