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LUPUS UK
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Waiting game

I have been unwell for some time. I already have hypothyroidism but in April after being admitted to hospital with a suspected mini stroke,I am seeing a Rheumatologist who has told me that I may have Lupus. I am being tested but no diagnosis and therefore no treatment. I am struggling with the fatigue and joint pain. Some days I can cope and others, I would happily go to my bed and stay there. Any tips would be greatly appreciated. Thank you.

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Hello MoyaP

Crushing fatigue has been the most debilitating of all my symptoms, and I'm afraid that I haven't found any brilliant ways of dealing with it. I just try to use what energy I have in the most life-affirming way (for me, this means not wasting it on housework!)

Since you are at a early stage with all this, maybe you will find some useful info in the LupusUK factsheets - there is one on fatigue? You can find them on the right hand side of the "home" page.

Don't give up! x

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Thank you for your reply, especially the tip on housework! I am realising that I can't be on top of everything at the moment and need to prioritize. I will check out the advice on the health page. Thank once again.

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Hi MoyaP,

Welcome to the LUPUS UK community forum. I hope that you find it a helpful place for support and information. Do you have a date for a follow-up appointment to discuss the test results?

We have a couple of blog articles that may be of some help to you; one is about managing fatigue and the other is about pain management. You can read them using the links below;

lupusuk.org.uk/managing-fat...

lupusuk.org.uk/pain-managem...

If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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Thank you for your reply Paul, the information is excellent. I have phoned my Rheumatologist's secretary today and I'm waiting for a call back. I have to go back to work next week and I'm a bit nervous about how I will work with fatigue and pain. Let's hope I get a diagnosis soon.

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Hi MoyaP,

Are your employers aware of your lupus? Are they making any adjustments to help you manage your better, such as a phased return?

We have a couple of booklets about lupus and employment which provide loads of information about your rights and what support is available. You can read and download them at lupusuk.org.uk/working-with... - if you'd like physical copies posted to you, please just send me a private message or email paul@lupusuk.org.uk with your name and address.

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Thanks again for your response. I have given my employer a letter from my Rheumatologist requesting a phased return and to be sympathetic while she investigates. I will share this info also. I have received a letter today to say that the results of my cardiolipin antibodies are negative but the lupus anticoagulant is not back yet. Do you think that there is a possibility that I don't have Lupus?

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Hi MoyaP,

I'm afraid that I really couldn't say whether there is chance you may not have lupus. I am not medically trained.

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No problem. Thank you for the advice that you have given me so far.

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Hi MoyaP, you had a suspected mini stroke: have you been tested for Hughes Syndrome/APS/Antiphospholipid Syndrome/"Stickyblood"(different names for same condition).

hughes-syndrome.org

healthunlocked.com/hughes-s...

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I think that I have Baba. The Rheumatologist checked this is there is family history of this. As you can see in my post above, a lot of my blood work has come back negative. Even though I do not want to have a chronic illness, without a diagnosis, I feel that I am living in limbo and can't move on. I know a am in the same boat as many others but it doesn't make it any easier 😢

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