Recently diagnosed (at last!) - Fibromyalgia Acti...

Fibromyalgia Action UK

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Recently diagnosed (at last!)

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Hi all haven't been on here In a while and I'm usually posting to the lupus community.. Anyways I've suffered with lupus for nearly 10 years but the past 2 years they have been telling me I shouldn't be in pain because it isn't active so I asked them.. Persistently for 2 years to test for fibromyalgia... Finally last week they said I do have it but didn't inform me of this 😑 now on painkillers and anti depressants but today I'm literally sore everywhere and I've noticed I've came out in hard sore itchy lumps on my knees elbow and bum cheeks πŸ˜• I'm just a little worried as I don't know if this is a symptom? Please help I'm really struggling to figure out what is my lupus and what is my fibromyalgia doing to me as they both have a lot of similarities any advice would be greatly appreciated x

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Hi do you know how could help me to write a letter to pip please

X-Jojom-X in reply to Maida123

Hi, I'm going through my forms at the moment too, citizens advice are helping me with mine maybe you could try them? X

TheAuthor in reply to Maida123

Hi Maida123

FMA UK have our own benefit adviser, a lady called Janet. I have pasted a link to her contact page below:

All my hopes and dreams for you



sorry you've been diagnosed with yet another horrid illness, unfortunately you have hit the nail on the head. I like a lot of other people on this site have one or more auto immune diseases and fibro

As you say unfortunately there are lots of symptoms that mimic each other so its always the best thing to get them all checked out. I've not come across your symptom and it sounds like it could be an allergic reaction so I would go see your gp just to be safe. I know itchy skin is very common, and it is hard to differentiate one set of aches and pains from another, but sometimes I don't think the gps know which is causing which symptom. This is a great site to be on though,people are very supportive of each other and there is always someone who understands what you are going through so can offer support or point you in the right direction.

Take care Linda

Hi, as Linda says, there are many here who suffer from both conditions, as I do myself.

It is difficult to tell which one is the one that is flaring as symptoms are pretty similar.

I am also Hypothyroid and have Sjogrens as well as Lupus so that is a real mix.

Like you I suffered from pain and yet my inflammatory markers suggested it was nothing to do with my autoimmune conditions.

My GP had suspected fibro and wrote to the rheumy suggesting it. This coincided with a visit to A and E with TMJ disorder, which was so bad I thought I had disclocated my jaw and which is also associated with fibro.

Added all up together it was pretty obvious to everyone that I had fibro, (bar me as I had never heard of it!)

Hope to see you around and joining in the forum


Hello X-Jojom-X

I just wanted to wish you a very warm welcome to the form :)

It can take many many years to get a definitive diagnosis of Fibromyalgia.

There are so many other conditions which need to be ruled out first, and obviously your Lupus will have complicated things even more.

Just for the sake of internet safety, we usually advise our members to lock their posts. Unlocked posts can be viewed right across the whole internet and shared on social media without your knowledge.

Here is an easy to follow guide that I have written explaining how to lock posts:

If you find you still need some help, please don't hesitate to give me a shout.

Once again a very warm welcome :)

Lu x


Hi X-Jojom-X

I am so genuinely sorry to read this my friend and as the others have said, it could be related to a different condition as many Fibro sufferers do endure multiple medical conditions. It may be worth getting this checked out?

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you


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