Very discouraged : Hi. I have been going to a... - LUPUS UK

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Very discouraged

Donnareed12 profile image
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Hi. I have been going to a rheumatologist for a few years now. Diagnosed with fibromyalgia abnormal blood and chronic fatigue. Dr says still in grey area for lupus and sjorgens. Not really able to hold steady job. How long does it take to be diagnosed. Bladder problems now also

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Donnareed12 profile image
Donnareed12
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Shaysuekirk profile image
Shaysuekirk

The treatment should be the same either way. Are they treating you for your symptoms?

Wendy39 profile image
Wendy39

Hello.

Unfortunately these auto immune diseases are complex and can take a long time to diagnose. For lupus the average diagnosis is 7.5 years but there are members here who have taken a lot longer!

It can depend on your doctor too. Lupus can be diagnosed without positive bloods - seronegative lupus. But unless they are experienced enough in this field and so might not feel ready to diagnose lupus.

None of us here are medically trained so cannot diagnose you but I would say take a look at the Lupus UK website and look at the information leaflets on symptoms and diagnosis etc.

If you are not receiving any treatment and feel you need more specialised help, look at where the Lupus UK Centres of Excellence are and ask your GP for a referral to your closest one.

But don't give up. You know your own body and you know if there's more going on. Trust your instincts and keep pushing forward. Be a pro-active patient.

If we can help with anything else, please ask. We're all happy to help by sharing our own experiences etc.

Best wishes and good luck.

Wendy

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Donnareed12,

Welcome to the LUPUS UK HealthUnlocked Community!

I am sorry to hear that you are having a tough time trying to get a full diagnosis.

Fibromyalgia can be commonly diagnosed during early stages of lupus. There are a few blood tests that are checked when diagnosing lupus. These are discussed in our free information pack. To download or request the pack please click here: lupusuk.org.uk/request-info... . You may also like to read our blog article about ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

Although you have not had a diagnosis of lupus, almost 90% of people with lupus report experiencing fatigue, making it one of the most common symptoms. We published an article on our blog about ‘managing fatigue’ which you can read here: lupusuk.org.uk/managing-fat...

Have you discussed your new symptoms with your doctor?

Discussing this with your doctor will allow him/her to provide you with the correct advice and treatment (if required).

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

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