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Lupus: between fatigue and joint pain

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avatar Margarita_k

Margarita_k

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09/05/2018 at 14:31

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avatar Margarita_k

Margarita_k

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Last activity on 07/10/2020 at 11:39

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Lupus is a chronic autoimmune condition which develops when the immune system attacks the organism’s cells and destroys them. In the UK approximately 1 person in 1,000 is affected by lupus.

According to our survey, 79% of the respondents had been unaware of the existence of this condition before they were diagnosed. But they consider themselves “lucky”, as the diagnostic delay only lasted 1 year for 53% of them, and between 1 and 3 years for 25%.

Today, these patients feel that medical care they have is rather good: 38% have a couple of healthcare professionals they trust, and 35% are happy with their medical team. However, they agree that often they have to do research on lupus themselves, as there is not enough information available for this condition.

They are also well supported by people around them. 79% talk freely about their condition with the members of their family, 62% - with their friends and 34% with their colleagues. Yet, almost one fifth of the respondents admit that they do not discuss their disease with anyone, and 66% of the ones that do, reveal that they are not quite understood by their entourage.

Sun, solitude and misunderstanding

This misunderstanding accompanies the disturbed rhythm of everyday life of lupus patients. Thus, 47%  of them have already taken more than 1 month off work/school, 41% have taken several days off because of the disease, and 18% even had to change their profession.

And that is because lupus symptoms can be particularly debilitating. The most common one is fatigue: “I always want to sleep...”; “At work, at a certain time nearly every day, I used to get really tired. Thankfully it was near the end of the day and I could go for a half hour sleep when i got home.”. But also, joint pain: “In winter I avoid going outside for more than 5 minutes, otherwise I can’t use my hands…”; “I also got restless legs at night which does not help either.”.

Patients also mention viral infections and the sun. “My family like travelling and outdoor activities, and I cannot be in the sun.”; “Lupus causes a sort of social exclusion: cannot go to the beach any more, or stay outside by the swimming pool.”; “I had to give up certain physical activities such as swimming (risk of rash or allergic reaction upon contact with water).”

Fighting against solitude

Isolation can provoke despondency and even depression. “I don’t have a job any more, so no social life. I am willing to go back to my former occupation but I am afraid I will not be able to stay active for more than 2 days. Tiredness takes over...”; “Urinary infections, inflammatory rheumatisms, vertigos, all this complicates my life and makes it difficult for my family and friends.”; “I am scared of tomorrow”.

It also sometimes causes patients to focus on themselves and on the most important things: “I had to “sort” my friends: some didn’t understand me, and didn’t respect my limitations. I wanted to follow their lead in the beginning, but I put my health at risk. Finally, in the course of the years, I succeeded in finding activities that I enjoy and that I can do with those who understand me.”

 

Are you surprised by these results? Did you experience something similar?

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avatar lesmal

lesmal

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14/05/2018 at 17:51

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avatar lesmal

lesmal

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Last activity on 28/05/2025 at 18:07

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Thank you for this article.

The symptoms appear to be very similar to epilepsy and how it affects the patient, especially isolation, depression, tiredness, heat and misunderstanding.  

I was tested for Lupus once but thank goodness it was a negative diagnosis.

I was also not aware that 1 person in 1000 was affected by Lupus!

 

 

 

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Les


Lupus: between fatigue and joint pain https://www.carenity.co.uk/forum/other-discussions/news-from-the-media/lupus-between-fatigue-and-joint-pain-2322 2018-05-14 17:51:08

avatar robjmckinney

robjmckinney

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06/08/2019 at 11:11

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avatar robjmckinney

robjmckinney

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Last activity on 29/05/2025 at 21:43

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My partner always wants to sleep and far more active in the mornings but lives within the dominance of the symptoms. It is an inconvenience but living with Lupus is just something she does and never lets it get to her!   

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robjmckinney


Lupus: between fatigue and joint pain https://www.carenity.co.uk/forum/other-discussions/news-from-the-media/lupus-between-fatigue-and-joint-pain-2322 2019-08-06 11:11:36

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