My diagnosis is Fibromyalgia: Hi, I saw the... - LUPUS UK

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My diagnosis is Fibromyalgia

HeKe profile image
HeKe
7 Replies

Hi, I saw the rheumatologist this morning. She has diagnosed Fibromyalgia so I'll be moving off here and onto the forum for fibromyalgia. Before I go, does anyone have any advice/comments for me re. this diagnosis? And I'd like to say a huge thank you to everyone who has helped me gain a bit of an understanding into the "new" me. Keep as well as you can.

Heather xxx

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HeKe profile image
HeKe
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7 Replies
whisperit profile image
whisperit

Hello HeKe,

It'll be interesting to see where your journey takes you from here on! Clear-cut, well characterised diagnoses seem as rare as hens' teeth in systemic, overlapping conditions like ours. Hope you find a FM diagnosis ticks all the right boxes for you in terms of treatment and recovery x

HeKe profile image
HeKe in reply to whisperit

It is so interesting. I don't want to be a Doubting Thomas so I've kept quiet. Most boxes are ticked, but some symptoms such as skin problems, butterfly rash and dry mouth remain outside FM. However, I handed all the information to my husband who eventually said "that's not you. You're more like Lupus than that." As he is an anxious man, I've pointed out all the similarities and said I'm happy to go with the diagnosis at this stage. I've learnt so much from this forum and Lupus is progressive whereas FM isn't so I'll just keep my eye on things.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to HeKe

Hi HeKe ,

I hope that you are able to get control of your symptoms moving forward with this diagnosis. Please do check out the fibromyalgia community, but don't feel you have to leave us. Many people in this community also have a diagnosis of fibromyalgia and may experience similar symptoms to you. If we can be of any help here, we will.

Shorthouse profile image
Shorthouse in reply to HeKe

Stress seems to run with everyone with these weird a i probs try a i diet gluten free has really helped me it could be coincidence I hope not we have got to help ourselves the docs won’t x

KayHimm profile image
KayHimm in reply to HeKe

You have a good attitude. Right now that is the most reasonable diagnosis. It may continue to be, and it may not. With your symptoms of rashes and dry mouth, they will be watching you. You sound like a lot of us in the beginning. These autoimmune diseases evolve. So hard when we just want to know what is wrong with us! Try to be patient, take care, and report new symptoms to your doctor.

HeKe profile image
HeKe

Thank you Paul. That is very kind. This forum has been incredibly supportive and people are very well informed. I'll be staying with you x. I'm also in the FM forum now.

shareasmile profile image
shareasmile

Please do keep tabs on all your body is doing. Take pictures of everything unusual and jot things down in a journal. I think many of the symptoms of fibro are a lead up to other conditions, so don't be shy in requesting repeat blood tests for ANA etc. My former doctor gave me that diagnosis until a new doctor did another ANA which came back strongly positive. Be vigilant. I do hope that the treatment you get is effective and you can get on with a happy, normal, pain free life!

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