Any advice please?: Hi. I was diagnosed with m.e... - LUPUS UK

LUPUS UK
26,395 members22,285 posts

Any advice please?

Zib78
Zib78

Hi.

I was diagnosed with m.e when I was 14, then hypothyroidism when I was 28, I'm now 39. Anyway, I still go through phases of extreme fatigue and joint pain. I have Raynaud's and have definitely had at least one positive ana blood test. I've seen one rheaumtologist who said I was just anxious. He dismissed my ana as "someone in my family probably has an autoimmune disease", and wrote in my notes that I don't have Raynaud's, even though I do! I did mention lupus when I saw him and he said there would be other markers in my bloods to prove this, is this true? Is it worth me seeing anyone else, or just accepting it's probably m.e/thyroid. Any advice would be very appreciated. Thanks xx

4 Replies
oldestnewest
Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Zib78,

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

An ANA test is not sufficient in confirming a diagnosis of lupus; an ANA test only confirms whether a person may or may not have an autoimmune disorder. Around 5% of people with have lupus will have a ‘negative’ ANA test result.

dsDNA antibodies are very specific to people with lupus (as they are not typically seen in any other condition or in healthy population). Approximately 60% of people with lupus will test ‘positive’ for dsDNA antibodies. For more information on the specific criteria and tests needed in order to make a diagnosis of lupus, please click here: lupusuk.org.uk/getting-diag...

I would encourage you to get a referral for a second opinion. We published a blog article which has a section discussing how you can change your doctor, to read this click here lupusuk.org.uk/getting-the-...

Below, I have included some information links which you may find useful:

Managing Fatigue: lupusuk.org.uk/managing-fat...

Joints/Muscles: lupusuk.org.uk/wp-content/u...

Pain Management: lupusuk.org.uk/pain-managem...

Please keep us updated, wishing you all the best.

Thank you very much for your reply. I would just like to say also that despite the flares I have being very painful/tiring, they haven't really got worse over the years. Would lupus definitely have got worse over years without treatment? However, the Raynaud's has only come on in the last few years, so things have added on. X

Chanpreet_Walia
Chanpreet_WaliaAdministrator
in reply to Zib78

Hi Zib78,

You're welcome!

Lupus presents differently in everybody therefore, no two people will share the exact same experience. For some, disease activity in the body can progress and cause new or more severe symptoms whereas, for others, it may not.

People with lupus can experience periods of remission whereby their lupus is more controlled thus, reducing signs and symptoms. Periods of remission vary from person to person.

To read our blog article on coping with Raynaud's phenomenon, click here: lupusuk.org.uk/coping-with-...

Thank you! I will try and find the courage to talk to my doctor about this, and will let you know how I get on x

You may also like...