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Lupus and how it affects your life

lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
Hi  my names is lisa and I have lupus  I have had it since ivwas 18  but didn't get diagnosed  until I was 36  but explained my health problems 

When I was 18 I gave birth to my first child and thsts when I had health problem  the first thing thst hsppend was my blood kept clotting and I kept hsvring mini strokes  then I had a big stroke when I was 26 

I had moved to Wales by then and I was lucky enough to have a doctor that thought he k ew what was wrong with me so I was referred  to the Louise coote unit in St Thomas hospital  London  I spent 8 days there  

I had heard of professor Hughes  but I got to meet him whilst I was in the unit he had many tests done on me over the 8 days  professor Hughes told me I had lupus  I had to have fragmin injection for the rest of my life 

My lupus does cause me many health problems  I have brittle bones  I have spondylitis  in my spine I have a heart murmer  I have a mild form of copd  and I have arthritis in my fingers 

I used to be in so much  pain and couldn't walk properly and I was in a wheel chair for a short time until I went on a pain management  course when I was 27 best thing I ever did I went back to work and my life got better 

I do have bad days  but in between hzvring  hidden I have hD several jobs I have been a hairdresser   I have worked for the DWP  I have been on tribunal panels  I have worked for tesco and I have worked in care and I have worked for boots pharmacy  I wanted to work and thsts whst I did I faced slot of problems in my work places due to my lupus but I loved working 

In 2003 I started my own independent  voluntary advocate service that I still do  and I have completed a law degree  I have done talks around the country up until three years ago 

Lupus has been the bug bear of my life  but I have stayed positive and got through life and I have had children  and been relatively happy 

Has anyone else got lupus or knows some one  else has got it  I would like to hear about it because lupus didn't used  to be widely known  and that caused slot of problems also there is alot of variations of lupus that mimicks other conditions  that makes it hard aswel fell free to adk me questions and comment  I would like to know 


  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    I have noticed at the top it says 36  that is meant to be 26 sorry 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,740 Disability Gamechanger
    Thank you for sharing your experience @lisathomas50 I do find it fascinating learning about various disabilities/illnesses/etc. I have heard of Lupus but don't know anything about it, is it mainly a pain-related condition?
    Disability Gamechanger - 2019
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    Lupus can affect your vital organs can cause stroke and heart attack  your immune system is low it does cause pain and there is some food or drink  that can flare lupus up I cant take pain killers unless I resly have yo thsts why I did pain management

    Lupus  is complicated  you never know what's goi g to happen next  my teeth came out with my gums  I get a butterfly rash  but anti ageing cream helps with that my hair lost its colour when  I was 20 thats only part of it 

    People I know when they first had it used to beg for remission  lupus can do that I used to  be the same  its nice you have no symptoms sometimes up to three months maybe ilonger but by Christ  when you come out of remission  you know about  when its ongoing you learn to live  with it  I know it sounds mad but I don't want to go into remission last time I cam out of it I couldnt move for a week 

    Thats why I wanted to fo this discussion one to help people understand it and two if someone else has got lupus  its easier to find out fifferentvthingsv

    I know  years ago some people had a gold injection  I never had that  there  are alot if variations of lupus I think I have 6   glad that you were interested  and thank you for your comment and your question 
  • chiariedschiarieds Community Co-Production Group Posts: 9,128 Disability Gamechanger
    edited January 2
    My eldest cousin had Systemic Lupus Erythematosus, which sadly wasn't realised until she was in the end stages of kidney failure. That was several decades ago, &, as with many disorders, more is thankfully known now.
    May I ask do you also have Osteogenesis imperfecta (O.I), as you mention brittle bones? I also have a genetic connective tissue disorder, which I found was associated with a neurological disorder (Chiari 1 Malformation) in a few, so wonder if you've been diagnosed with both Lupus & O.I.? Whilst Lupus can also be a genetic disorder, I haven't heard about it being associated with O.I., but would be very pleased to know more.
    May I also ask what type(s) of Lupus you have, if you don't mind me asking? Your mention of having 6 types has me puzzled.
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    Hi thank you for takeing the time to read my post  I only have lupus 

    It is a complex condition and some people have symptoms that others don't have and some people have symptoms thst no one else has 

    Lupus is an autoimmune disease  with variations  I can explain how my lupus affects me but I couldnt tell you  how others are affected by lupus because people have different symptoms which is why I started this post to see if any one else had it or knows of anyone 

    I am sorry that  your cousin passed away when I went to St Thomas hospital  to the Louise coote unit for 8 days  inet three other girls I was 26  one was 22 and one was 20  we were all diagnosed with lupus  but my friend who was 22 had been there a few days  and she found out it had affected her brain  she passed away whilst I was still in the hospital 

    My other friend her lupus had affected her bones and liver  and she was havring gold injections  for 6 months  we stayed in touch  for a few months  and I used to see her at appointments until wales had a lupus unit  she lost the use of her legs because of a variation of lupus  I don't know ehstchsppend after thstc

    My lupusbhad affected my bones and liver and I had antiphlofiside syndrome  know as Hughes syndrome named after professor  Hughes  who at the time was running the Louise Cooper unit in St Thomas hospital London 

    I have a specialist who ttreats me at neath and port Talbot  hospital  I take fragmin injections to thin my blood  I have brittle bones and arthritis in my hands and spondylitis in my spine   I also have heart problems  and a damaged liver  and mild copd  my lupus has slowed down but won't get better  I have good days and bad days  but I push myself snd I have always worked until this brcsuse I had corona virus 

     I have been told I have six variations   but I get told its nothing to worry about at the moment once a year I have brain scans and mri  scans   and heart scans  because of the corona virus has flared my lupus up  snd not going out much is affecting my legs so I need to sort thst out  I need to get back to work  to keep me going    if you have any more questions don't hesitate to ask 

  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    Thstcis one of the variations i have 
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    That is one of the variations  I have 
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    What i have posted is only general over all that can happen  not all people have the same symptoms 
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    Hope  this helps explain   there is lots of information on line about lupus  I take five thousand units a day of fragmin I would of posted thst on here but wasn't sure if thst was allowed  I had an eye operation recently as lupus affects the eyes aswel  I have now been allowed  to drive again and I have joined the job support with scope to get me back into work  these are only a few of my symptoms  I am happy to answer  any more  questions you may have 
  • chiariedschiarieds Community Co-Production Group Posts: 9,128 Disability Gamechanger
    Thank you, my cousin & I were very close, & because of her I decided to learn more about Systemic Lupus Erythematosus.
    I hadn't heard of antiphospholipid/Hughes syndrome, but it seems you likely have secondary antiphospholipid syndrome associated with Lupus.
    Thank you for explaining more, tho I'm still unsure why you've been told you have 6 variations of Lupus. One is neonatal & another drug-induced, which doesn't seem to be the case, so leaves the 4 types of Lupus more commonly found.
    I'm pleased to learn you haven't got Osteogenesis imperfecta (brittle bone disease) rather ?osteoporosis, which I hope you find more reassuring, altho that comes with it's own problems, I know.
    You seem to have been most fortunate in your Drs, especially Prof. Hughes. It all must have been so difficult, & with your many pregnancies too. I'm pleased you're managing well now with regular monitoring. Should you wish, you might like to discuss with your specialists as to what type of Lupus you actually have. I always find that the more you know about your health condition the better, tho I know that's not for everybody.
    Thank you for discussing Lupus, as we often have discussions by people with different disorders on Scope (or by the Scope team), & raising awareness of these is very important.

  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    Thank youv I only posted a few things as there  re mountains of things I can post 
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    All the above  is what I get because I have lupus sle the variants I have  are Hughes syndrome  osteoporosis  which is a form of brittle bones I have had lots of broken bones and hairline fractures  neonatel  and I csnt spell the other two but I lost my teeth and gums  and my hair kept falling out  thry are called variants becsuse I have lupus sle  which stands on its own  and the variants  I have mentioned  normaly stand on their own but I have them sswel  but only parts of them thsts why they call them variants 

    Ots very complicated its taken me from 18 years old as it was always mentioned to understand  and all the ins and outs  which is why I used to give talks   I thought that it would help proe if there was someone on here with lupus 

    I wrote a book called living eith lupus  it went down well in America in the UK not so well it was when aids was first brought out  which is also an autoimmune  disease  so people thought I had aids  so alot of people don't share  their condition 

    I have been called lupus  dirty b  told I had a gay disease  an d shouldn't come near me  and now  prople go on at me saying there's nothing wring me but I grew a thick skin lol 

    I csnt explain it any better than I have today is one of my bad days  but I survive lol
  • chiariedschiarieds Community Co-Production Group Posts: 9,128 Disability Gamechanger
    I'm going to mention a few things here rather than takeover @RAwarrior 's thread, as part is relevant to this post. You mentioned there that, 'what happened was out of character, I went a bit far defending myself & for that I was sorry.' Also you seemed bothered by 'Poppy talking to me in a fashion & her mate interrogating me on my discussion.'
    I hope I may explain a little. My comment that I'd been here 16 months, whereas you'd only been here 2 weeks, was about the fact, which I mentioned, that I'd seen the benefit of Poppy's advice over & over again. Now before you think I'd just blindly follow someone's advice, a little about myself. Whilst I was sure Poppy's advice was sound, as I hoped to learn more about benefits, my way of learning was to follow the links that Poppy & members of the Scope team gave, as well as research myself.
    Now, with your post about Lupus, you did say 'feel free to ask me any questions.' I was very interested in you mentioning 'brittle bones,' purely as this is a genetic connective tissue disorder, as is mine (Ehlers-Danlos Syndrome). I found, as I mentioned, that a few with Ehlers-Danlos Syndrome also had neurological problems, so was interested that some with Osteogenesis imperfecta (brittle bones) might also have Lupus, & would have liked to know more. Sorry if this felt intrusive, or you thought I was 'interrogating' you.
    Osteoporosis isn't usually described as a form of 'brittle bones,' & I hoped to reassure you on that point. I also, as far as medical info goes, look at medical websites, research & more, especially about connective tissue disorders & neurological problems.
    I'm sorry about people misunderstanding about what is often perceived as an 'invisible disorder,' which sadly seems to often occur.
    May I also say that 'semantics' does not mean quibbling or petty, rather the meaning of words. Please do 'google' again to confirm. Hope that clears things up.

  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    I said your interested  in my post   and that I was talking to poppy as I had been asked if I was ok  I have two problems my phone puts things I don't want it to and I have to Foyle check but I also have sleep problems I was awake for two days and I havent checked  but I just looked at what I put on the other thread and it doesn't say issy what you said 
  • chiariedschiarieds Community Co-Production Group Posts: 9,128 Disability Gamechanger
    edited January 4
  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    Thanks for posting this discussion @lisathomas50, it offers such an interesting insight into Lupus and your experiences.

    Do you think that over the years you've grown used to managing it?
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  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    Ross scope yes over the years I have learnt  to manage my lupus I have had to realy as it wasn't realy known about 

    I was refferd to st Thomas hospital  London by my doctor when I moved to Wales  I had been diagnosed with so many different conditions and I nearly died because of it as some medications can make lupus worse 

    I am now on frsgmin I junctions for the rest of my life  and I have  forti  sips drinks which is like a milk shake  which has all the vitamins in it  that people can normaly hold in their body  I have 3 aday  as I constantly  have to put vitamins into my body  because I don't hold vitamins   can at least save my hair now 

    I lost my teeth  apart from two along with my gums   my nails grow now and I dont have as many ofections 

    I vr new symptoms every now and again as my lupus progresses so then have to get used to something else  as I have said above I have lupus with variants  which is hard to explain but I did my best in the above 

    I wanted to do this post to see if any one else on here gad got lupus and to see how many other conditions have simillar  symptoms to lupus  as lupus is a hard condition to diagnose  I was lucky thst I had a doctor who ne what lupus wS  and when my daughter was old enough she was tested and treated straight away  and her lupus hand affected her so much 

    Thank you  Ross scope for commrnting
  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    You are welcome, and thank you for sharing your experiences on the community :) 

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