LUpus Patients Understanding and Support
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Life And Lupus

Having Lupus has changed my life, as a child I was always on the go. I swam most days, belonged to a life saving club, did lots of canoeing and spent time playing netball and rounders at school.

Life changed a lot when I entered my twenties, the most noticeable change was the chronic exhaustion, I didn’t give in to it I just carried on.

By my mid twenties I had my first daughter and this is when I really began to struggle, she didn’t sleep very much and this made life horrendous, but it never occurred to me that I could be ill.

I then had another daughter, a son and another daughter, life was getting difficult especially the exhaustion but I didn’t give in I just went on pushing through the exhaustion.

Eventually a very kind doctor suggested tests, which came back, border line, then two years later I had positive results and I began treatment.

Once my medication got into my system things began to improve, lots of niggling problems I was dealing with just went away. The most noticeable improvement was that the chronic exhaustion I had been dealing with just went away.

After two years of treatment my Rheumatologist decided that I didn’t need the medication and stopped it.

Three months later I developed an overactive thyroid, then all the old symptoms came back and I began to feel very ill. Two years I had to fight with my Rheumatologist to try and get the lupus medication reinstated, she kept telling me I wasn’t in a flare as my bloods were normal.

After some really bad months I decided to have a private consultation at the London Lupus Centre. The consultant reinstated my Lupus medications and added another diagnosis as well, which was Sjogren’s syndrome.

Three years on my Lupus is fairly well managed, although I am nowhere near as well as I was before my original Medications were stopped. I now also have bone dry eyes and dry mouth that I am learning to manage.

I have also been diagnosed with Hashimoto’s thyroid, which has had a big impact on my health, and I am really looking forward to getting my thyroid under control.

Life is beginning to look better and I am really looking forward to having a relaxing xmas with my family.

1 Reply

Dear Smileyface,

I'm sorry you have suffered as you have but unfortunately, your story is all too familiar. Unfortunately, some families have more than their fair share of autoimmune conditions and therefore some people have several autoimmune conditions as you have.

I am very glad you have been able to attend the London Lupus Centre which is run by Professor Graham RV Hughes. It is very sad and unfair that this has to be done privately.

Thank you for posting your story.

I wonder whether you have any views on psychological support. I ask because this is why LUpus Patients Understanding & Support (LUPUS) was created in 2000. We would very much like to hear from you and others so that we can offer something that is helpful.

Be well!



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