Update: Fibromyalgia?: Hello. I've had my 2nd MRI... - LUPUS UK

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Update: Fibromyalgia?

Maya23 profile image
5 Replies

Hello. I've had my 2nd MRI with contrast and now a letter from my neurologist says that the results do show an incidental meningioma (a type of benign brain tumour). This doesn't really explain my symptoms though. My rheumatologist said he couldn't see any evidence of vasculitis either. My next follow up appointment with neurology is at the end of July.

All this time I'd been blaming the Lupus for the all-over muscle aches, burning tendons and nerve pains, but now I'm not so sure. I stumbled across an NHS page about Fibromyalgia and I was surprised to note that the list of symptoms seemed to describe me completely - even down to the IBS, stiff neck headaches, depression, tenderness and sensitivity to pain. It would explain why the lupus blood tests seem to show improvement even though I feel so awful. I'm going to see the GP soon because the depression has been hard to manage this year. It doesn't help that I'm also grieving for my dad who died a few months ago. I'm also hoping for bereavement counselling.

Here's the link to the NHS page: nhs.uk/Conditions/Fibromyal...

I am wondering if Fibromyalgia might be my diagnosis after the neurologist finds nothing else wrong? I already know someone who have both lupus and fibromyalgia. Does anyone else here have this diagnosis on top of Lupus? How is Fibromyalgia usually diagnosed?

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5 Replies
CRYSTAL11 profile image
CRYSTAL11

Hi Dryad

Yes you can have both. I have just been diognosed with fibromyalgia after having Lupus for 25 years. I went to the rumatoligist who pressed on points on my body which did hurt like hell and said yes you do have fibromyalgia

I have been the same as you with muscle aches and ligaments being very painful it's good to know what I have but there is not much they can do. I go to the pain clinic in August so finger crossed they can help

Maya23 profile image
Maya23 in reply to CRYSTAL11

Hi. When I was initially diagnosed in 2010 the Rheumatologist did press on certain points but I didn't feel pain there back then. However since that time, I've had new aches and pains - particularly the burning pains in arms and legs (tendons?) around the joints and in the muscles, and nerve pains too, and I wonder how I'd respond to the same pressure tests now?

Maureenpearl profile image
Maureenpearl

Hi Dryad

Sorry to hear you are going through so much. I do hope you will be able to get a diagnosis regarding the symptoms of fibromyalgia soon.

You will need to start bereavement counselling before you consider taking any anti depression medication as it stops you grieving.

All the best

God bless

Maureen xx

23_molly profile image
23_molly

Yes. Have had Fibro for 25 years. The differential Dx is tricky. To me Fibro is "hurt all over," with crippling fatigue and IBS, whereas Lupus is hot, swollen, painful joints; fever/chills; and in my case, weird renal numbers. But each person's course of symptoms differs. I refer to mine as "add a new syndrome every few years." Hope this is helpful. molly

EmmaSSS profile image
EmmaSSS

Hi Dryad. I was also diagnosed with fibro after my lupus was under control so it does sound likely that it could be if your doctors have ruled out everything else. The only real treatments for fibro are exercise, stretching, sleep management and pain meds for the bad days, but I do feel a lot more in control now that I know what it is. Hopefully counselling will help you as well. Good luck x

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