First Symptoms & Experiences

This was the first of a series of posts that asked people to write about their experiences and understandings of Lupus and related auto-immune conditions.

Here we were keen to understand how people first knew something was wrong. They could, for example, write about their early symptoms or concerns and anxieties about their health. How did these symptoms and concerns make them feel? Did they do anything about them? Did they share them with anyone?


...the joys of parent-hood & Lupus...


...I had never heard of it...


...what happens if in 5 years...


...I was diagnosed, just after my 30th birthday...


...I would cry myself to sleep...


...I have to consider myself lucky...


...I ended up in hospital on a drip...


...I read the Lupus books which were scary...


...I was 14 when I started to become incredibly tired...


...I next saw the doctor after I had had two seizures...


...it was like being given my life back, even though I was still very ill...


...my first symptoms were 8 years before diagnosis...


...In January she was diagnosed with anaemia...


...My bones are slowly deteriorating...


...treatment from hospital has been nothing short of variable...


...I started feeling very tired...


...it took 3 weeks for diagnosis with SLE...


...I woke up in the night with an incredible pain in my chest...


...I've never let it beat me...


...my body just didn't seem to bend quite the same way as other people's...


...I'd always had problems in the sun...


...They support me in so many ways...


...I still haven't worked out the cause of the anxiety/agoraphobia...


...I was at the end of my tether. I even went onto anti depressants....


...the waiting time to see one in my area was around 4 months...


...I could not move a muscle and actually at times wished I was not around...



...I think I've remained fairly positive, most of the time...


...Initially having a diagnosis was a huge relief...


...my fingers were always stiff and swollen in the morning...


...It seems Lupus people have always been 'sickly’ even prior to diagnosis...


...I once again couldn't understand how I felt permanently exhausted...


...We decided to come back to England due to my illness...

Tanya's Story

After having my third child last year I found things much more difficult. I found small tasks so hard. I presented at my doctor and the hospital several times with infections and pains.
The doctor generally felt that my immune was low after having the baby and I was just unlucky with infections. Also advised that breast feeding reduces your immune. I couldn't go on like this. I was really struggling.
I probably didn't really tell anyone how I was feeling, not now when I look back. I guess as a Mum you have soo much responsibility, especially with a newborn. You feel you have to cope, just keep going and surely you'll feel better soon

On several occasions I experienced severe arthritic pains, which meant that I was unable to hold my baby, which was really tough, especially because I was breast feeding. At the time, Doctor advised that I might have a reactive arthritis, which flares when the body has infection. We discussed taking bloods to test me for arthritis, I decided to do this, as it was very severe at the time, although also completed vanished within a week or two. strange.

Also had mouth infections, as a result of lots of mouth ulcers. Again was just of the view that my immune was low and unable to fight infections on its own. The tiredness is the worst!!!
Anyway, I was given several courses of antibiotics; I would almost feel as though I was getting better when another infection would floor me.
The hospital staff were good, but only treated my symptoms, no-one ever queried previous infections or concerns.
I was at doctors about four months ago and the nurse was taking bloods, I broke down, explained how I was feeling and how ill I felt. Quickly saw the doctor, who was very sympathetic and said you've got to tell us how you are feeling. Wish I done this sooner. Hindsight’s great. Although I had been to the doctors lots, I was just telling him about current infection at the time. I didn't know there was more going on. My partner was quite annoyed with health service in general, he felt that they should have taken bloods a long time ago.

Anyway, blood results showed that my kidneys and lungs were not functioning properly, my blood pressure was also very high. I was admitted to hospital that day, I was actually relieved. Thinking that you can’t cope or feel any worse. Least now, I knew why!!!(hard to make this short).

I stayed in hospital for almost one week, and my body recovered very well, with just rest. They took bloods three times every day and checked BP several times daily (Initially catheterised). They just kept telling me things had improved and I was getting better. Kinda just relieved that I felt better again. Not until my discharge letter highlighted some concerns.

I was readmitted a couple of weeks later to do a kidney biopsy. The results show that it was my own body that attacked my Kidneys, and they think that it maybe Lupus, I have been back several times and each time they take more bloods. Still querying it as Lupus. I feel I need confirmation to allow acceptance and move on.

When I was in hospital everyone was so worried and everyone emphasised that they were all there for me and very supportive, I didn’t have to struggle through this alone!! Everyone now is checking I’m alright, I’m really fortunate that way!! But still find it emotionally very difficult, I find this kinda therapeutic. Probably feel counselling would be beneficial, which I shall pursue when I’m finally diagnosed. I now have to change my lifestyle. I’m trying to be positive about this, but find it very difficult. Thanks for listening
: - )

I think, I know that worrying about your health doesn't help. When you don't have a formal diagnosis you worry that it might be something else. Cancer for saying sake. Almost any illness you put in to the net is linked to cancer. I have almost confirmed with myself that I have lupus due to symptoms, but need formal diagnosis to accept and move on. Acceptance for me and everyone close to me.

I think not having a diagnosis leaves me very unsettled. I was due to return to work last month but feel I am not ready to do so. I would feel better if they knew what was wrong and advised what they can do to help. I worry how I'll cope returning to work.
Currently I find household tasks very tiring and don't cope very well if i don't get much sleep. I can be teary and tired and sore.

The joys of parent-hood & Lupus …

p.s. I feel guilty too, I have to rely on others to help, with everyday tasks... I used to be so strong and independent…

I am very lucky that I have an amazing fiance and a great daughter that helps me everyday. Both grandparents are wonderful too!! Overnights at grannies every week is a great break :-) I have considered asking my health visitor for support. I am unaware of support on the lupus website, but I shall have a nosy.

In my job I tell people all the time to accept support before they are on their knees........... Now I understand (from the heart) how hard it really is to acknowledge that you can’t manage on your own, whatever your age.

Anyway, I hope that my life can be as fulfilling as I planned, maybe just a bit more healthy, less alcohol, also planning my days and taking things very easy. Even though it’s not in my nature, I know the benefits are far greater!!! Feeling well is bliss..........I don’t want to think too far ahead, my condition may not worsen, maybe that’s very unrealistic, I’m not sure to be honest. I guess one step at a time : - )

It does worry me that I might not cope well at work and find this too stressful. I love my work!! I didn't find it too stressful before, so hoping if I can reserve my energy I manage just as well as I did before, although shall take things that little bit slower, if poss.

Again, everyone in my work has been wonderful, so supportive, especially my boss, it really really helps!! I tell myself that I shouldn't worry, cause I’ve got all their support right behind me : - )
My future plans shall have to be altered maybe no more partying in the sun, instead just chilling in the shade : - ) it could be worse !

Donna's Story

It was in 2003, I remember feeling like I had run an entire marathon without training for it. My joints and limbs ached so much I couldn't move them. Needed help to even get out of a chair or to climb the stairs. GP took blood and diagnosed rheumatoid arthritis and prescribed steroids and anti-inflamatories. At 25 this devastated me, I cried in the chemist on the phone to my Mum whilst awaiting my prescription. Within a week or two I developed a huge rash that spread from my toes up to my knees. It looked like blood blisters the size of 5pence pieces only they weren't raised. I thought it was meningitis as it didn't disappear under the glass test! GP instantly said he thought it was SLE. I had never heard of it. He telephoned the hospital and arranged to have me admitted as soon as the weekend passed, told me to make arrangements at home as I would be in for about a week. I stayed for 3 weeks!
They took blood daily and a biopsy of the rash which positively diagnosed Lupus. I frequently felt like a freak show attraction. Being a university hospital the students had heard of me and opted to use me in their studies. Doctors would stand at the bottom of my bed with groups of students and get them to attempt to correctly diagnose me after quizzing me. It wasn't until I was quizzed like this though that I learned that the afternoon naps I had been having while my son was at school was a symptom rather than laziness. And the mouth ulcers weren't from being run down in the sense that I thought. I felt utterly devastated about having Lupus mainly due to reading some horrific (out of date) facts about how I would probably be dead within a few years. I then went through the "why me, what have I done to deserve this" phase. Followed by separating with my partner (won't go into all details but Lupus did play a small part as he didn't take it seriously because I looked fine on the outside). Then followed a depression phase so I tried to talk to others in the same situation on forums but I felt that I had upset them by getting my diagnosis so quickly. They also depressed me even more. I felt bad enough already without hearing about more ills and woes, so desperately in need of a pick me up I went out clubbing and drinking with friends, burning the candle at both ends with no respect for myself or my health. After 6 months of this behaviour my kidneys became involved and I was hospitalised again for a month. A course of chemotherapy was the slap around the face that sorted me out.

Online it seemed that long term forum members would sympathise with new members who were struggling with getting a diagnosis, offering them tips and suggestions but I got the impression I was being ignored, perhaps they felt like I didn't need help.
I don't remember anyone sitting down and talking to me about the illness and its implications. All I remember is being given a booklet which contained probably no more than 8 very brief pages of information, then being left still wondering about an awful lot of things after reading it. I'm the type who would like know everything there is to know whether it be good or bad, rather than the ignorance is bliss type. (I very quickly bought myself The Lupus Book by Daniel J Wallace and found that it was the best thing I ever bought). In my experience I have noticed that doctors can be very vague when you ask them questions. Lupus is such an unpredictable thing, I think they don't like to say too much about the future and its possibilities in case they are wrong about it and worry you unnecessarily. Counselling would have been nice. I think it could've helped me a great deal. In my opinion it should be offered to everyone diagnosed with a lifelong condition.
After the course of Cyclophosphamide my health improved considerably so now I'm not constantly reminded of the Lupus by way of aches and pains, only by dozens of tablets! I realised that I needed to make lifestyle changes to try to prevent the Lupus flaring again, and also psychological changes to preserve my sanity! (It sounds extreme I know.) I now accept that there is nothing I can do to change the fact that I have this illness so I ignore it as much as I possibly can. There is no point dwelling on the bad things as they may never happen. I try to do all the things I would have done before, even if I end up feeling the effects for a few days afterwards due to overdoing it a bit! I refuse to give up work despite my father telling me I ought to. My job prospects are better since diagnosis as my employers had to give me a desk job. After these changes my life improved considerably. I met my partner, we made it through a miscarriage and two complicated pregnancies and we now have a 23month old boy and an 8month old girl. Things are better for me now than they had been in 10 years. It took Lupus to make me who I am today and I'm fine with it now. :)

My colleagues do know about the illness as it's very hard to hide all the hospital appointments and tablets from them! If they weren't such good friends too I think they might object to my time off for these appointments. Thankfully they don't treat me any differently though.
I often wonder about the true cause of Lupus because it's thought that there are so many factors that could contribute. Although I've never heard it said that rhesus factor plays a part, I do wonder if the fact that I have rhesus negative blood, and my 13 year old son was rhesus positive, could have anything to do with it. I could explain my reasoning for this but it would probably take up a couple of hundred words! Besides if it were a feasible theory I'm sure the scientists and researchers would've picked up on it by now because I seriously doubt that I'm a future Nobel prize winner :-) As for "why me?", I never did get to the bottom of that one! The only thing I know with any certainty is that it's not my fault, nor anyone else’s either.

I'd like to say thank you to you all for your kind comments, I'd do a bashful emoticon thingy if I knew how!

Harriet's Story

I had my first real definite symptom in January 2007 I know the day, place, time as it was a very strange event - my wrist started to ache and within half hour it hurt so much my wrist and fingers turned into the shape of a 'claw' and it was paralysed I couldn't do anything with it until a few hours later it slowly wore off, this was just the start or different joints just paralysing for no apparent reason and the pain was unbelievable! It was very confusing and a few times I went to A&E thinking I had broke my arm! It took 2 years of constant visits to GP and consultant and a few very emotional visits too before I was diagnosed in 2009. Although they medication has helped the joint pains, I suffer with awful tiredness, mood swings, mouth ulcers and chest pain in my chest which apparently could be inflammation of the lining of my organs.

At the moment I see a arthritic consultant, but I have spoke with my GP as I want to see a Lupus specialist as unless I talk to him about arthritic pain he is not helpful or interested in the tiredness or chest pains and gives me a very sarcastic smile and nod if I mention anything else, very irritating!

I understand it takes time for it to be diagnosed as it can mimic so many other conditions and it could have been something I may have grown out of, also I think people look up lupus and think 'oh yeah I have that' and they don't! Which is annoying too!

I think someone who specialises may understand more, I really think the consultant I see thinks I exaggerate (or that how he makes me feel!) last time I went I told him in morning it feels I’m having a heart attack cant breath properly pains up and down my left arm his answer was 'well that is part of it' he didn't explain why it is happening what’s causing it or if I should be concerned so once again I referred to the internet for help - which I shouldn't have to do.

I am 25years old and I should be out having an extremely active social life but this just doesn't happen, I still manage to work full time but I'm hoping to maybe drop to working 4 days a week next year - so because I work full time I tend to not doing anything mon - fri as I just want to sleep. I do still play netball for a team I love it so much and I fight the pain to play I have been told I shouldn't be doing such a physical sport but I won't give up all the stuff I love even if it causes me more discomfort in the future.

Obviously the prospect of having children is a big part of my life, I do not want to be a young mum me and my partner always wanted children later on but now I find myself thinking how long do I wait? What happens if in 5 years I get internal problems and I am not well enough to have children or will I be able to? I am on methotrexate and I know I am not allowed to conceive on these tablets and they have helped me so much so the thought of having to give up those tablets scare me. Also my consultant has said to not even think of children right now - then like the helpful man he is stopped talking and didn't explain why or my options!

I manage Lupus by re looking at my whole life in general. I have my close who I love dearly who when I am well I make time for I do not waste my energy and time on pleasing other people or doing everything for others - my time when I am well is precious and because of this I now know who and what is the most important parts of my life. Before I was diagnosed I also got a dog who I love so much - he is there every time I have a bad day and walking him relaxes my joints and is so calming and therapeutic.

Stacey's Story

I was diagnosed with SLE in 1999, just after my 30th birthday.
I was feeling pain in my joints and stiffness on and off for years, my mum has rheumatoid arthritis and at first GP thought that was what I had. I had been very ill with infections, pneumonia, tiredness and alopecia from teenage years to adult, I am asthmatic, since childhood. And kept having recurring pneumonia. At 21 I had my 1st pregnancy , but I had pre eclampsia which resulted in me having an eclamptic fit in hospital and serious kidney involvement, my son was born 9 weeks early due to this decrease in my health, I had an emergency c section. He was fine but very small at 3lbs , I had to have a blood transfusion. 2 and a half years later I had another son through emergency c section he was 4 weeks early and I had gestational diabetes and polyhydroamnios, he was fine and 7 lbs. My health has always been a concern, I remember having the malar rash as a child in the summer, and have photos of this as a child. However at 30, I was diagnosed with SLE as I was constantly, tired, having infections, mouth ulcers, alopecia and joint pain and stiffness. Blood tests confirmed SLE, I had a positive ANA test and also anti DNA and Sm test. Also a La test. (not sure what that’s for ?) I also have Sjogrens, asthma, endometriosis, diabetes and all through life have had hypermobility syndrome (9 score).

My Rheumatologist team at [name] hospital are fabulous as is my GPs, so I have always had good information regarding my condition, they are always up to date with my condition, I get bloods, urine and bp checked monthly. I am currently on Aathioprine and prednisolone, but have been on methotrexate and hydroxychloroquinine in the past. I had to give up work 9 years ago and am unfit to work.

Lucy's Story

I first felt pains in my legs as a teenager and was told it was due to growing pains. I became pregnant at 16 and begun having seizures and prescribed anti convulsants. After I was the usual tired new mum but with headaches also. Diagnosed with severe migraines.. I had another child and all was okay for a bit but did suffer achy joints and headaches. Didn’t bother the docs anymore as they said I was just a mum and at this time my first child was showing signs of epilepsy and my focus was on her. At 24 I became pregnant again and could hardly walk due to painful joints/swellings. I also had a couple of miscarriages. After the birth I was so weak and tired. My legs would give way whilst walking with the buggy. The doc x-rayed but nothing showed up. All they kept saying was I was now a single mum and just tired and stressed out!

My back and knees were so painful I would cry myself to sleep. I still continued to work part time and go to college, but sometimes my 2 eldest would have to help me feed and change my youngest. Also my eldest was eventually diagnosed with epilepsy and my 2nd was diagnosed with type 1 diabetes. My youngest now has Reynaud’s Syndrome and is always tired. I was wondering if there is some kind of genetic or DNA mutation, or mitochondrial disease.

It was hard for docs to diagnose me as I have no family and finding out medical history is always important.

When I was 26 I was admitted due to chest pains and body weakness. I couldn’t move or speak coherently. I also had a rash all over my body which looked purply/red. They thought I had guillan barre syndrome then a stroke then MS I was in hospital for 3 weeks. They even said maybe my problem was psychiatric. I must admit I did suffer from depression since I had my first child. This did upset me as I felt it was all in my head and not real pain I was feeling. I did think I was going mad. I discharged myself and went home but needed social services to help with carers to come in and help with cooking/cleaning etc for nearly 6 months… it was awful..
After this I just kept getting bronchitis, chest infections , pleurisy, viral infections etc.. All the hospital said was take paracetamol and bed rest. I was told that I didn’t have epilepsy now as I had stopped the meds myself for sometime due to feeling so groggy all the time.. I was then told I was having migrainous seizures. I was then referred to a rheumatologist who prescribed plaquenil due to my skin rashes in the sun and joint pains. They concluded that i had a lupus like illness but were reluctant to fully diagnose this. I am now 38 years old and have had to leave full time jobs at least 3 times due to this. I have Hughes as well, but it is all fine now. My lupus test is positive but in the past it was negative then positive… Sero negative …

Rose's Story

I developed painful joints when I was 19 and was diagnosed with Rheumatoid Arthritis. After 1 or 2 years the symptoms disappeared and I was without symptoms until 2007 (age 34), when first my hands started aching, later elbows, shoulders, knees, hips until I needed my husband's help to dress, comb my hair and brush my teeth. Looking back now, I would say that stress had something to do with the break out on both occasions. I know that I was very lucky to have seen an amazing rheumatologist, who has been invaluable. I also know that being affected "just" by swollen joints and fatigue, I have to consider myself lucky. I found it particularly hard to cope with not getting pregnant, when I wanted to, but again, thanks to some amazing medics, I am now a mum. The most important thing, doctors and cortisone aside, has been my husband, who is ensuring I get breaks and rest every day.

Zoe's Story

I have been living with Lupus for about 15 years. My first symptom was a swollen ankle I thought I had been bitten when my other ankle and my fingers also became swollen I went to see a GP at my surgery he told me I ran too much and did too much knitting! I worked in a knitting shop at the time. I was about 22 at the time.I never went back for over a year and when I did go back I had every symptom going hair loss, rash on face most of my joint were swollen and achy, extreme fatigue loss of appetite, split tongue. I looked old! I felt old and terrible but surprisingly I never had a day off work!

Anyway this GP suspected I had Lupus and sent me to Addenbrookes to see Dr [name] he did the usual blood test to confirm this.I was put on two tablets Hydroxychloroquine and Steroids (prednisolone). These however made a slight difference to my Lupus but the weight I put on for someone who was active was a shock!

After a few years can't remember how many, I took a real turn for the worse with a high temperature and ended up in hospital on a drip. They did various tests in which I found out I had various things but it was the Lupus that had caused my high temperature. A few years later I had another episode where I felt as if my back has slipped a disc I couldn't breathe properly laugh cough sneeze etc (properly for years, purely because of the pain) turns out Lupus had attacked the lining of my lungs and left them with scar tissue, hence why I couldn't breathe properly etc I had lungs the size of a small child. It has taken years of visits to lung function, exercise and inhalers which I still have to use to get my lungs to a reasonable size. I no longer have to go to lung function but I am very susceptible to a lot of chest infections.

I also had another stint in hospital, again high temperature, weight loss due to loss of appetite this time they put me on azathyoprine (not spelled right) and again this worked quite well for a while as I was able to reduce the dose of the steroids then they decided to take me off the azathyoprine and put me mycophenolate and this worked a treat for me as I no longer take the steroids ( for over 5 years) and go back to the hospital once a year for check ups I have next to no symptoms. I have managed to go back and study (I have just finished my degree which I planned on doing in my 20's) which I would never have been able to do early on in my illness just purely ‘cos I slept so much!
All the while I was ill apart from the study I never considered that I was ill. I was young and wanted to do everything my friends and family were doing I didn't want to be different. I took the tablets and helped relieve aches and pains with alternative heath therapies such as acupuncture. I still exercised. I feel I am a stronger person now than I was before I had Lupus.

Emma's Story

I was just 13 when I became ill. My energy was really low and all of a sudden I was getting chest pains and couldn't breathe very well especially when doing even the smallest amount of activity (much later we realised the Lupus had affected my lung capacity). I was in a show at school, doing some dancing, and had no under-study, so my mum wrapped a bandage around my chest, I went on stage and did my dancing then came off and went straight home. It was also around the time my family went on holiday to Disneyworld and my dad had to carry me around ‘cos I was too out of breath to keep up with the other kids, but I still desperately wanted to be with them on every ride.

Lots of doctors followed, but I don't really remember the details. It was around a year until I was diagnosed. There was definitely a period when they thought it was iron-deficiency. I had a few days in the children's wing when they put steroids in my arm, I guess this was probably after I was diagnosed. I remember my Mum being there every day, bless her. My parents probably remember the doctor details a lot better than me.

I just remember I was a teenager and suddenly felt so detached from my friends who were running around, worrying about boys etc. I think they even got cross at me because I wasn't being part of the group or something - silly girl stuff - but I was probably equally upset about that and my health issues. I was a big dancer when I was younger - attending 2 or 3 classes a week and I remember being quite stubborn about carrying them on - which has translated later in an extreme need to carry on a normal life and get on with things. I am lucky though, my Lupus has been very controlled for a while now.

Like a lot of other people, I read the Lupus books which were scary as most were written for the USA where they have to pay for health care so the statistics were high but not everyone can afford medication. I felt it best to ignore all the info, after all, I had the symptoms so I knew what they were.
Some times I did find if I had something I wanted to know I would ask at my next hospital appointment; one time my mum came with me and asked something and the Dr made her feel so small as if she was not cleaver enough to deal with the answer. I found this extremely rude as my mother has worked with cancer patients for years!

In regards to how or why we have Lupus, someone once said I can't remember who that sunny holidays and being on the pill can trigger Lupus but we have always probably had it. Also your genetic heritage my father is a tiny part Turkish and apparently it is very common in Turkey to have Lupus. I know someone whose mother had numerous miscarriages but has only just now been diagnosed with Lupus even though she is well into her 60s.Even though I have had all this info given to me true or not it does not change the fact that I have Lupus and I have to deal with it the best I can.

Megan's Story

I was 14 when I started to become incredibly tired. I slept through lessons at school and would then come home to sleep all evening and night, the Drs first thought I had glandular fever and then went down the MS route, but my symptoms went away. Then about a year later I was doing some digging and that evening I was in agony my wrists and hands had swollen and had horrendous pain in both. I went to the Drs again who then referred me to a rheumatologist who after a few more tests diagnosed me with having SLE at the age of 16, but after looking back through my medical history said I had probably had it since I was 14.

Up until the diagnosis, I had not felt any concern but at my diagnosis the consultant told me what I had and just gave me a leaflet on it then fear really set in as I read a list of horrible things which could happen to me and being a 16 year old girl the thing I panicked the most about was my hair falling out!!!! I am 27 now and things are far more in perspective. I have had 2 healthy children against what Drs said was possible and lead an active life the vast majority of the time. I try to keep the mind over matter and maybe a few meds along the way.

Clare's Story

My symptoms started around six months after the birth of my second child and following a pretty severe mastitis infection. The symptoms I had were that I was overwhelmingly tired, aching all over with pain that was widespread, I lost a lot of weight over a few months, I had headaches, mouth ulcers, difficulty concentration, wasn't able to sleep, and generally felt pretty rubbish, and not at all like I had been feeling before the mastitis infection. I visited my GP with these symptoms after they had persisted for around three months. My GP promptly (mis)diagnosed me with Post Natal Depression and sent me off with anti-depressants. When my symptoms did not improve he sent me to a psychiatrist, who threatened to have me sectioned because I wasn't getting better quickly enough, oh and when I said that I wasn't depressed he said that I was saying that because I was depressed! So, I pretended to be better, as the thought of being sectioned when I had a toddler and a baby didn't strike me as a good option. I next saw the doctor after I had had two seizures, he sent me for an epilepsy test which showed I didn't have epilepsy, and gave me anti-depressants, several different ones in fact. Subsequent doctors’ visits only talked about how my symptoms were due to my being depressed, so I gave up on telling them, I had to give up my job and my college course and struggled to be a decent mother. When my wrist and shoulder became unbearably painful, and completely incapacitating me; around seven years after first taking myself to the doctors, I returned to the doctors and for the first time they ran blood tests, and diagnosed lupus, subsequently diagnosing specifically as central nervous system lupus.

Cheryl's Story

My first symptoms of the illness were a stroke! I was almost 40, had worked a full day as an ASW specialist senior social worker,(I'll happily tell you the treatment I received from employers privately) came home had a sudden onset severe pain in my head, my eye sight went strange, and I felt like I was going to pass out. I was admitted to hospital, my speech had become slurred by then and my left side kept tingling. No neurologist saw me whilst I was in hosp. They kept me in for a week. Speech etc came back as did left side within a day.

They told me to see my GP and get an outpatients referral to neuro, eventually GP said he thought it could be MS. We ended up paying privately to see Neurologist ( on nhs waiting list 6 months!) who said he thought it could be a venus sinus thrombosis, not MS. I couldn't afford to keep paying privately and we managed to get me seen on nhs, once neuro saw nhs notes he changed his tune and decided, I has a drink problem and didn't want to work! Even though I don't drink alcohol and my job was so important to me. He even wrote that in a letter to another consultant, I was under gastro consultant who was so helpful as my bowels and gi tract appeared to have been compromised following the stroke. I had during this time had further symptoms, very similar to MS, pins and needles in arms and legs, legs going heavy, vision going black and white for about a minute, vision going blurred, severe migranous type headaches, limb aches, confusion, jumbled words, like the cardex is there and I can't always find the right word and sometimes use the wrong one, sometimes sentences don't quite come together as they should and my spelling is now not what it was.

Eventually the neurologist sent me to a neuoro psycholgist, this was very difficult because I was sent to the best in the business and he was someone I had worked with closely on many cases! I spoke to his secretary to check he was ok with seeing me, in some ways it was nice to see someone you know but I was acutely aware he also knew my capabilities and I already knew they'd reduced, which was one of the hardest things I found I had to contend with, that and not being able to return to my job, took me 4 years to come to terms with that! There's still days I wish I could do it. We did all the tests, he picked stuff I wouldn't have used when working with him as much as poss, I made the mistake of letting my partner sit in. At the end of it, my partner was sat behind me in silent tears and a man I had a lot of time for professionally had to sit and tell me he had fund significant difficulties in both my short and long term memory, spacial awareness etc. As I was leaving, there were tears in all our eyes.

It was then that the lupus label came up, my mum had been diagnosed with discoid lupus. The neuro said no it wasn't lupus, and took me off his books yet again, after 18 months fighting the nhs to be treated properly, I seemed to be relapsing every few weeks and, in the end, my partner put in complaints with pals and complaints team who found notes had gone missing from my nhs file, blood results had gone missing, GP wanted to take me of his books( turned out a blood test I'd had when I'd had a chest infection 3 months before stroke showed eosinophilia and GP hadn't acted on this at all. Moved GP surgery, because of my work links I spoke to pct, a complaint was put in and my old GP took 6 months to send my notes and again large sections had been cut out. Luckily I had an insurance policy and the company had requested my GP medical records after the stroke. The PCT were given a copy and pieced together what was missing. The GP is no longer practicing, the consult neurologist is no longer a director of the trust, but none of that help me.
12 August 2010 11:27
My new GP agreed to refer to St Thom's lupus clinic, I saw Dr [name] and he sat there looked at all the medical info and reports told me I had lupus and also Hughes syndrome, which I'd never heard of.. it was like being given my life back, even though I was still very ill.

I still have TIAs, I've had a second stroke, I have an unstable INR, arthritis, I can't walk far, have pain all over, inflammation of my blood vessels, my lungs are scarred, my kidneys and heart are now involved, I've got an arrhythmia and get pericarditis, micro clots in vessels, have Sjogren’s, Reynaud’s and Sneddon’s, I don't seem to go into remission, apparently some people don't and I have neuro/cns involvement, high focal lesions in the white matter of my brain(which should have alerted the neurologist). The upshot is I live with the condition on a day to day basis, I still make plans, I can't always do them, my family and friends have come to understand this. It's like living with Pandora’s box, you get a range of symptoms you may get the same ones for days or weeks or they may chop and change and you never know which you’re going to get or how long they'll last. I'm not able to work mainly because of the stroke & CNS/ brain involvement and thanks to St Thom's, neuro psychologist and 3 occupational health consults and my union I did after 2 years get allowed my works pension! I remain positive and my motto is live every moment. I still go to St Thom’s, have a great hospital nearby, we moved 5 years ago and a fantastic GP/nurse network.
My daughter has since been tested and has SLE (she had what they thought was glandular fever when she was 13, they know think this was her first lupus flare) they also suspect she has Hughes, she also goes to St Thom's. With hindsight, I'd had symptoms from about 12 yrs old, glandular fever type illness, almost miscarried, ankles swelling and not being able to walk for 3/4 weeks at a time, always picking up infections etc. I think I’m quite pragmatic about living with illness most of the time, apparently my partner says I'm quite stoic!

Laura's Story

My first symptoms were 8 years before diagnosis, the main and most annoying things was the tiredness, just feeling so exhausted all the time. I had two very young children and for some time i thought it was normal, but then this got worse along with being sore. I finally went to the doctors and was told it was normal with 2 young kids!! So I battled on, often thinking I was just lazy, I thought who else needs to rest so much and struggles as much as I do. Then these lesions appeared on my face and arms, which again I ignored for a long time, until some asked if I had ringworm!
I soon went to the doc who arranged for photos taken. We moved abroad then, my husband is in the forces, and as we registered with a new surgery they took details height weight etc and also wanted a urine sample. It was almost straight away I was called back as the levels of protein were so high. A long story short, after numerous tests and biopsies SLE was diagnosed. The treatment while abroad was great but been living in the UK for 10 years now and well...you learn to cope the best you can.

Chris's Story

My daughter Holly started to have problems with her joints and spine when she was 11 (she's 23 now) and our GP referred her to a rheumatologist who dismissed them as growing pains because none of her joints clicked when he moved them. Since then we have been to the GP several times with tiredness, hair falling out, pain in general, IBS, eczema, asthma and other ailments. In January she was diagnosed with anaemia and began to look up her symptoms on the net...everything pointed to lupus. So, she had bloods done through our GP and of course nothing showed up apart from her inflammatory levels were raised, so we're now waiting to see our GP again. The only trouble is that Holly doesn't trust specialists now after the reaction she got when she went at 14, so we're in limbo!

Jaz's Story

I’m now 29 but was diagnosed with SLE at 14. From the age of about 12/13 I had little symptoms like swelling of the ankles and achy joints and being very tired. A lot of my symptoms were diagnosed as 'growing pains' and at one point my school head master wanted me to see a psychiatrist as they couldn’t see anything wrong with me yet I was in pain. one day I went to the GPs with a throat infection and he prescribed penicillin which I had an allergic reaction to near enough straight away and was rushed to hospital, but when I got home, within a day or so I had the classic butterfly rash on my face. So, when I returned to hospital for a skin check up they rushed me straight in and diagnosed me with lupus. My GP told my parents I was like gold dust to them and they were learning from me about the illness which made me very safe in their hands!!!!

A few years later the lupus affected my brain which the hospital diagnosed me with a urine infection and sent me home again with antibiotics and later that night I collapsed at my parents bedroom door, when the ambulance came and took me to hospital they said it was very lucky as any longer and I wouldn’t be here today. The lupus then went from my brain into my kidneys and the treatment for that was cyclophosfermide which the doctors told me would make me infertile and I was only 16. It took me ages to get my head around the fact I wouldn’t have children only to fall pregnant when I was 18 with my first child, who passed away with a heart related illness at 4 days old but it wasn’t anything to do with the lupus they said. I now have a lil boy of 7 and lil girl of 6 and they both are healthy and well. The only thing I worry about is my children having this illness but at least I know the symptoms to look out for from my own experiences. my day to day routines vary and the children do try and help out as much as they can but they are only children and it’s not their place so I tend to try and push myself as far as i can go, they understand that mummy gets tired a lot and I need my rest and my son gets very protective over me. They couldn’t say lupus so they used to call it mummy’s loopys, lol.

My bones are slowly deteriorating and the pains are slowly getting worse, my right knee cartilage is wearing away and the same with my left wrist but I have been told that is to do with being on the prednisolone since I was 14. It is a hard illness to deal with but I have time to get used to it I suppose and I know my limits and to look after myself is a must so day to day I just get on with it and take what life throws at me and get on with it, more so now than b4 the children, as I think now if I don’t take care of myself who will take care of my children and they are what makes me get up in the mornings and push myself.

Phoebe's Story

I guess I first experienced symptoms of Lupus when I was away at university. The fatigue was probably the most prevalent symptom in those days, but being a student I put it down to lectures, working & partying. The only problem was that I couldn't cope with the tiredness & it resulted in my becoming depressed & dropping out. Even after dropping out & resolving depression, fatigue never went away.

Then ten years later, the fatigue became something more. Infections became more common, mouth ulcers, bone & muscle pain - particularly joints, Reynaud’s in my hands initially & then in my feet - at first mild then severe. Headaches, confusion, memory loss, fever in the night. Rashes started appearing.

The pain & tiredness was crippling me. More & more time was spent on sick leave than at work. Then I had a period of stupid illnesses, gall stones, appendicitis, started early symptoms of Chrons, Meanwhile everything increased in severity. Backwards & forwards to the doctors I went. You're depressed they would say...Why am I depressed was my reply. I have a lovely home, lovely job, lovely marriage. You're anaemic was the next one. Shrug of the shoulders next from them.
Finally after talking to my Dad, I put two & two together. He has autoimmune problems, maybe I did too. Back to the doctors - no, you're talking rubbish. No I'm not I would insist.

Six months later, I can't move for pain, even if I could I was too exhausted to want to move. My life was hell. Finally, a doctor who referred me to the hospital. I think he just wanted to shut me up. More blood tests. First appt with a registrar. Registrar says to me...I think you could have Lupus. Hallelujah! I think. Off I trot for more tests. Go back one month later - different registrar - no you don't have Lupus, you have fibromyalgia & all I will do is put you on anti-depressants. This registrar didn't even do the pressure point test. He took one look at my notes that said I had had depression & made his mind up. Even when I got upset he just brushed me aside.
Back to my GP who offered no further assistance. Six months later, I'm back at the doctors pleading for help. My employers were now getting shirty about me having time off, I felt friends & family had washed their hands of me & all through my pain & tiredness I had to keep going.
When I saw my GP I demanded more blood tests & a referral. He refused. I was more than a little insistent that he did the blood tests & included in them the ana tests. After much growling he agreed but refused a referral.
Two days later, I received a call from the head GP, apologising for his colleague, informing me that an immediate referral was being made & it was his belief that I did have Lupus.
Two weeks later, back at the hospital - different registrar again, & finally confirmation of Lupus....& treatment. I thought it was all over then & I would start to feel better.

That was last June. The year has been chaotic in both work & personal life. Friends, family & employers are struggling to understand the condition. I have been forced to keep going at the same pace as before even though my body doesn't want to.

I face losing my job now through medical retirement, although I am on medication it hasn't helped me much. The hospital are not supportive in any way. I have just been for a review (finally) & am now awaiting cardiology tests. The road looks very long at present & I wonder how long my friends & family will hold on for me.
I experience daily frustration, exhaustion & pain. Even as I type this I get increasingly emotional remembering everything I've been through & still going through. The put downs from the doctors, my employers ringing me up only two weeks ago stating they are not happy about my sick leave (I've had three days off since the start of April - go figure that one). The relentless shrugging of shoulders from people who just don't understand & comment how well I look. I could go on but I won't.
The only thing I know throughout all of this is that I am determined to have that one day in the future, even if it is only one day, that I will feel "normal". Just one day is all I ask for.

I should add, that the treatment from hospital has been nothing short of variable from the downright appalling to first class. I am meant to see my nurse practitioner every 6 months. I last saw her last July - the appt keeps getting cancelled.
My employers – well, the least said in public the better, but I can imagine it is similar to the earlier poster who was an ASW - I work in a similar field in the voluntary sector and it is not pretty.

Louise's Story

I'm 56 and was first aware of symptoms 3 years ago. I play violin in a string quartet and one day I played a friend’s viola for an extended session. From that point my shoulder started to ache, but I put it down to playing a larger heavier instrument that was set up for someone else. However, the pain did not go away but got worse so that playing my violin was painful. My GP diagnosed rotator cuff injury and gave me exercises.

I started feeling very tired - to be honest I have always needed a lot of sleep - but when I actually fell asleep in an important meeting at work I began to think this was more serious. I also started to get aches and pains in other joints, such as my hips, knees, ankles and hands.

My GP prescribed NSAIDS which helped a lot and sent me for various blood tests. Eventually I was tested for Lupus, and about 9 months after my initial bad shoulder I was prescribed Plaquenil.
After the diagnosis I did wonder if I had had this for longer. I have had symptoms of fatigue and lack of concentration for some time, and I also started with Alopecia Areata in 2005, which I still have.

Sam's Story

Looking back to when I was in my teens I got sunstroke which made me swollen and full of water retention. When I married at 19 I can recall getting home from work having to sleep for 2 or 3 hours before making my husband’s dinner as I hadn't energy. After my 1st child at 22 I became very tired and lethargic and depressed. After my 2nd child at 32 in a new marriage the tiredness got worse. At 42 I was really ill with an bad ear infections had to have 3 courses of antibiotics which didn't really help. My 1st husband died suddenly which devastated me as our son was only 21 and my body couldn't cope. I felt so ill for a few months bed ridden and swollen full of poison and it took 3 weeks for diagnosis with SLE. I don't know if it was the depression over years of an unhappy 2nd marriage ,child birth, trauma, infections or a combination of all things that triggered it off. I know it was there for years waiting to come out as every winter and spring I was seeing my GP for depression.

Charlotte's Story

I was diagnosed with Lupus in February 2006, but I suspected I had it long before that (my paternal grandmother and 2 aunts have Lupus so I knew a little about the disease.) But to be honest with you I didn't want to have Lupus so I ignored it.

Throughout my teenage years I regularly ran a temperature if I got too tired and I had mouth ulcers all the time. The Drs gave me vitamin tablets and things improved in time so I guessed they were right. When I started my A' levels I ran a low grade temp most days and then all of a sudden it would be very high (41-43C) for about a week. I was diagnosed with Glandular fever (although the tests came back negative) and I just accepted that every time I was too tired it came back with the high temperature for a week or 2. Throughout my late teens and early twenties I went swimming once a week (I've never been that sporty!!!) the next day I was in pain. I thought to myself 'every one gets stiff after exercise' but I knew that their knees didn't hurt so much they couldn't walk, but if I took ibuprofen it got better. Whilst at uni, I took a summer job putting 2 batteries in a box (yes it was fascinating!) and by the end of the day I couldn't move my fingers. By now I was pretty sure I had Lupus but I didn't want it so I didn't go to the doctor and just kept taking painkillers.

During my 1st year of teaching a number of things went wrong in my life, but I am pretty sure that it was my 1st major Lupus flare as well. Between September - January my hair fell out, I had constant colds and flu, I was covered in rashes, I was in pain and exhausted all the time. These was put down to stress and depression. In February I went to my doctor covered in a rash with a temp of 42C and said this isn't in my head. He diagnosed Malaria but the tests came back negative only showing I was low in iron so he put it down to a virus. I quit teaching deciding that I clearly couldn't cope with the stress and over time things improved. I had a few years of just getting sick if I got too tired. (It was a regular joke at work that I always had a cold).

In Sept 05 I woke up in the night with an incredible pain in my chest. I was diagnosed with pneumonia a few days later. A few weeks later (after 3 different types of antibiotics) I was admitted to hospital very very unwell. They eventually diagnosed my with mychoplasma pneumonia and Lymphoma (as my lymph nodes were very large) The lymph node biopsy came back negative so they tested my blood for everything. A couple of weeks later I received an appointment for Rheumatology and I knew then that I could no longer pretend that I didn't have Lupus. I met the consultant that cared for me while I had pneumonia a few months after being diagnosed with Lupus and he said he would never have thought about it being SLE which was odd because I know I told him I had Lupus in my family and my parents and aunt asked him straight could I have Lupus. I just think if a Dr makes his mind up about a diagnosis he doesn't listen to other options.

Rebecca's Story

I first developed Lupus at age 15. I was out shopping with friends and my hands suddenly stiffened up and my legs just went extremely stiff and I had to sit down.
Within 24 hours I was very seriously ill, I couldn’t dress myself, get up out of a chair or walk anywhere. I was in extreme pain all over and every joint was excruciating. I had to be lifted really carefully so that my joints weren’t pulled.

We had numerous problems with our GP and first consultant which I'll mention in the other post.
I had constant pain in my joints and the extreme tiredness was incredibly hard to deal with. At the age of fifteen you just want to be out with your mates and instead I was walking around like an old lady.

After 18 months my medication was starting to get the right balance and the joint pain wasn't as constant as before. I always have had problems with my hands ever since, I ended up having to have a trigger thumb release operation on both of my hands at the age of 18 after years of painful steroid injections.

I'm now 25 and still to this day I have issues with my hands and if I have a flare that’s the first place that gets painful and stiff. I've never let it beat me, I managed to get through my GCSEss, A Levels, Degree and now I own my own business.

I have also developed fibromyalgia which has the same tiredness feeling as Lupus, so it’s sometimes very difficult to know which one is causing problems sometimes.

I was on Methotrexate for about 7 years but came of this gradually about 2 years ago. I've managed to be pretty ok since then, so my lupus is definitely more under control. My husband and I are planning on starting a family in the new year so that’s the next hurdle to cross but hopefully everything will be ok.

Erin's Story

I had symptoms throughout my life that were probably (but not definitely) related to my lupus (or other aspects of my mixed connective tissue disease), but I didn't know that I should take them particularly seriously, or at any rate I didn't link them. I wasn't diagnosed until I was in my early twenties when I finally managed to get a referral to a dermatologist about something which has then been bothering me for eight years - calcinosis. My GP had insisted I just had 'benign fatty lumps' but occasionally they would burst and elementary geological training made me pretty confident I knew what the contents were. They had caused repeated wounds which I received no support for (just "don't pick at it", as if that helps when something is piercing one's skin from the inside) and as a consequence my right knee was swollen with repeated infections, I was often in considerable pain and I had walking difficulties. The dermatologist started asking questions and diagnosed an autoimmune condition almost as soon as she set eyes on me. It just so happened that at that same point my muscles were getting dramatically weaker. My response to this had been anger at myself and a feeling that I was being a wuss or not trying hard enough, but when I realised I had difficulty carrying a full bucket of water I started to understand that something might be seriously wrong. Anyway, before all this, going back to my very early childhood, there was eczema, which was prolonged and painful. There were eating difficulties because I couldn't produce enough saliva to cope with dry or chewy food. When I helped out with others' life saving training (in the course of my own training in water-based life saving), people complained that I spoiled it for them by not relaxing properly, when I felt I was as relaxed as I could be - my body just didn't seem to bend quite the same way as other people's. In my early twenties I noticed a thicker, darker patch of skin on my stomach and went to my doctor about it, but was told "It's probably just a piece of muscle that's become detached. It'll sort itself out." Those were the main ones. Also, possibly, the fact I always suffered from dry eyes, didn't sweat normally (scarcely at all), couldn't cope with hot weather and was prone to feeling faint in the sun.

Hannah's Story

I'd always had problems in the sun-even in childhood but it was never life threatening. Late in 2003 I started to experience neuro-psychiatric symptoms which included hallucinations and paranoia...initially I was Sectioned as the docs thought I had a mental illness, but a rheumatologist I was under the care of, found out and tested me for Lupus.

Since that point on, my life has changed dramatically, no more work or career, I’m on high dosage steroids which make me huge, depression and anxiety has set in and from someone who was happy and healthy and content, I am not a shadow of the person I was. The fatigue and the lethargy stops me from being 'normal' and I just wish someone would hurry up and find a cure!!!

Aliyah's Story

I had symptoms throughout my life that might have been related to my lupus. As a child in my early teens I had joint pains and was always Ill. I remember going to the doctors a lot and was told it was growing pains, I kept going back, then was told it was water on the knee and other things. I started to think in was in my head and just lived the pains until 10 years ago I’d had enough.
and went to the doctors and told him I’d had enough and wanted to get to the bottom of all the pains etc. He done some tests and said to wait for them to come back. Meanwhile my left leg had blown up like balloon, so I went back. Doc said I had sprained my ankle and to rest it, so I went home 2 days later. I could not walk so a friend took me back. Was sent up to hospital for tests for dvt to rule it out, as doc said he didn’t think it was that - turned out it was. If i left it any longer I would not be here. got test back 3 weeks later - say I had S.L.E. ~It’s been ten years and it’s still not sunk in. I try not to let it take over my life but it’s so hard not to, I’ve put on so much weight and I’m really low all the time. Still get some joint pains but a lot of the time I get chest pains that last days on end and can’t move much and headaches from hell that lay me up for days too. Numb down one side of face. Forget things a lot. Just want my old life back. It’s not just me that suffers it’s my family as I seem to be taking it out on them and I can’t do the things I want to do with them. I have 3 kids. 14, 15 and 3 years. find it so hard with my 3 year old. My older girls help out so much with him they’re brill. They support me in so many ways. They are my rock. Don’t get no help with paying for meds or DLA.

Violet's Story

I was diagnosed with overactive thyroid when I was 13 and had 6 years of treatment (finally radioactive iodine) and now my thyroid is underactive but meds are stable.
About 3 years ago, when I was 25, I found that I wasn't feeling right. I was really fatigued and didn't have as much energy to go out and felt generally under the weather- picking up viruses easily etc so I went to my GP and they kept on going on about my thyroid and doing TFTs and saying they're normal.
I developed alopecia and started getting migraines (something I'd never suffered from before) and still the doctors kept focusing on my thyroid, even though I was telling them that I know how I feel when my thyroid's the problem and this felt different. The doctors ignored the fact that 2 years previously I'd seen a rheumatologist who'd diagnosed possible MCTD and Sjorgen's.

It took me 2 more years of similar GP appointments when I was finally referred to another rheumatologist who diagnosed me with SLE immediately.

At the time I felt really frustrated, knowing that something wasn't right but not being listened to and constantly being told there was nothing wrong as my TFTs kept coming back 'normal'. It felt like my GPs diliked the fact I was telling them that there was something they were missing. Even now I wonder if I would have been referred to a specialist had I not met a newly qualified GP who admitted he didn't know what was wrong but would send me to someone who might.
A year after diagnosis, I'm on Plaquenil and Citalopram as well as NSAIDS but still face the same issues with lack of understanding in the medical profession as well as lack of support.

The plaquenil has helped me with general fatigue and has also helped reduce the unusual discoid lupus I have on my lip (my dermatologist had never seen anything like it in 20 years and even invited me to a GP 'show and tell' to allow doctors greater awareness of different skin conditions')
The citalopram has also helped with my anxiety which was making it difficult for me to function at work and even leave the house as my panic and anxiety were so bad.

However, I suffer from migraines and joint pain that isn't helped by the Plaquenil and NSAIDS and after my most recent appointment with my rheumatologist last Friday I left feeling frustrated and 'alone'. I went to my GP about these issues and he recommended I speak to my Rheumy as he's the specialist, but when I asked my rheumy for help he said I needed to go back to my GP.

I have asked for tips and help with coping day to day with work and my private life so that I can try to have a 'normal' life, but my Rheumy said he had no advice and that I'd have to find my own coping mechanisms and basically pushed me out the door. I appreciate it's a complicated illness and little is known but when my specialist tells me he can't help I feel like I don't know where to turn next.

It's difficult for someone who has never experienced SLE to understand how much it affects daily life and limits what you can do. Being 28, I should be out having fun not spending my spare time resting and preparing for the next week of work! It feels as though now I've been diagnosed and given different meds that that's the job done and I can be left to get on with it, but the truth is that when such drastic changes happen in your life, more support is needed to help us understand the illness and advice on how to control it.

I hope this answers your question (I have a bit of 'brain fog' today so thought processes not so clear!)

I think there's a really strong argument for post-diagnosis support whether from the medical profession or volunteers who have lupus. As I said, I felt as though I was diagnosed, given a leaflet, given meds and then left to get on with it. However I had so many more questions to ask and so many things came up after the diagnosis that I didn't have anyone to ask.

I am a member of an online support group- they're fantastic! If I have any question about symptoms or tips for headaches/aching muscles etc I know I can go online and get support from people who are going through the same things and can offer support and advice.

My GP has been great but he's limited with his time and I don't expect him to be the person who guides me through my illnesses. It would be great if there was someone at the health centre who could counsel people on how to deal with chronic illnesses and life-long illnesses. Someone who can give tips for how to make the most of every day and how to balance activities.

Right now I'm seeing an occupational therapist for my anxiety problems and I've been touching on these issues of illness which has been helpful and I hope to get more from this. I've only just started work with my OT- we've spent the last couple of sessions talking about my anxiety and where it stems from. She's helped me realise that although I've always been a worrier, part of my anxiety comes from the sense of a loss of control. Having autoimmune diseases as a teenager that meant I couldn't control how I looked and I couldn't 'cure' affected me- I took on a lot of responsibility. This 'lack of control' has continued each year as I've developed new illnesses and knowing that I can't prevent them.

We're about to start work on overcoming my anxiety and agoraphobia (which worsens when I'm having a lupus flare) and looking at techniques for me to feel calmer/safer when I'm in crowded places. She's also helping me choose another type of talking therapy such as CBT/ counselling which will help me retrain my thoughts and also talk through how I feel both for my anxiety and SLE. I realise that I'm lucky to have this support- my current GP is the first person to refer me to an OT (rather than giving me more prescription meds) even though I've suffered with these issues for over 7 years.

I still haven't worked out the cause of the anxiety/agoraphobia. I think it may have started pre-SLE when my thyroid was very overactive but it has definitely got worse over the last few months.
I think it's a symptom of lupus as it is worse when I have a flare but it was always there under the surface before my lupus was diagnosed. Some of the work we'll be doing over the weeks is trying to work out the root cause of it. It will be interesting to know!

Mia's Story

I was eventually diagnosed with SLE, fibromyalgia, Sjorgren’s syndrome and had already been diagnosed with anti-phospholipid approx 8 years ago.

From age 12 years suffered "growing pains”,then got pregnant at 16 years old. The pregnancy was tough with seizures and swellings to cope with. I was diagnosed with epilepsy. I then became pregnant a year after the first birth. I was very ill at 10 weeks pregnant and miscarried a twin. I also had a rash on my face with vomiting and general aches pains and full body weakness. The GP had never seen anything like this and diagnosed viral meningitis.

I was ill for approx 3 weeks and had to crawl on the floor as I could not stand. This was tough with a little toddler as I have no family to help and my husband had to continue to work during this time.

I continued the epilepsy meds ‘til I was approx 21 years but stopped due to feeling tired and groggy most of the time. The GP just kept saying that I was a new mum and stressed. About this time my eldest was diagnosed with Petit Mal and temporal lobe epilepsy so I focused on her.

I was so weak sometimes I couldn’t get out of bed or walk anywhere and was housebound with 2 small children and relied on neighbours or close friends to take my girls to nursery/school etc.
I went on to another pregnancy after having 2 more miscarriages before the 10 h week of pregnancies. By now I was 24 years old and still tired. GP suggested I had ME as I had so many viral infections.

I still wasn’t convinced, but again also at this time my 2nd child was diagnosed with type 1 diabetes. So with 2 girls now needing even more care and attention then what is the "norm" this was very tough. My husband even had to give up his job as at aged 26 years I was admitted to hospital with body weakness, slurred speech and severe shooting pains in my arms and legs. I was fully aware and conscious but could not respond verbally or physically. I was rushed for an MRI but it was normal.
14 August 2010 17:38
I explained about the stopping of anti convulsants some years before and again epilepsy was considered, but a neurologist decided I was just experiencing a form of migraine seizures.
I discharged myself after 3 weeks as they had no idea and performed a spine tap which they said showed I had MSbut after 2 of these one was positive and one was negative. They also suggested that all of my symptoms were psychiatric related as I had suffered severe post natal depression since the births which progressed to full depression.

I was upset with this, but thought maybe it was all in my mind as they couldn’t find anything wrong. It took a few months after leaving the hospital to get back to how I felt normally.. I even had to move house as I couldn’t manage stairs.

I saw a rheumatologist who said he had no idea and referred me back to an orthopaedic surgeon as my back and legs used to just give way and this was dangerous with my youngest being so young still not to mention my other two.

I had another 2 episodes with muscle weakness and pleurisy with loads of chest infections and bronchitis( I don’t smoke ). I was at the end of my tether. I even went onto anti depressants.
At age 30 years a rheum diagnosed Anti phospholipid syndrome with the blood being "14" ? I was prescribed aspirin and plaquenil to help with joint pains and also skin rashes which had come and gone since I was 18 years old. It helped a bit at the time.

Lupus was considered but ruled out as I had a negative ANA. So I plodded along for a bit. I eventually was assigned a rheum nurse who was fantastic and gave me injections when I was really ill in between my OP appointments. I have left several jobs because of all these occurrences and even lost my home as a result due to financial reasons.

My youngest now has Reynaud’s, so with the other two we have all had some form of autoimmune disorder.

I am on plaquenil and small dose of prednisolone when needed. The most alarming symptom for me has been head shaking movements with some twitching in arms and legs but it’s not epilepsy. I rarely go to docs anymore but have now been told it’s definitely Lupus but they feel I am a sero negative patient.

I’m sure there is more I can tell you but the above gives you a general picture.

Kirsty's Story

I'm only 20 and have only just been formally diagnosed. When I was young I picked up infections very easily and seemed to have bouts of having very severe migraines, I also had lots of problems with my stomach and digestion. I had several scans and tests but all were inconclusive. I also had problems with my skin, with a very red lumpy rash on my arms which I was told was to do with blocked follicles and given cream for and told to exfoliate regularly!

When I was 19 I had a terrible kidney infection that left me in agony in A&E and in bed for weeks. I never really recovered. A few weeks later I woke up in the middle of the night and couldn't walk to the bathroom, I put it down to over work and maybe too much exercise. Next it was my shoulders and I was really struggling to lift my arms to dress in the morning. With some painkillers and a little help from my boyfriend I was usually fine by lunch but, by the evening, I was exhausted and sore again.

I went to my GP who took one look at my swollen hands and knees and referred me to a rheumatologist saying he thought it might be rheumatoid arthritis. Unfortunately the waiting time to see one in my area was around 4 months, so my parents paid for me to see a private consultant. He ordered a whole load of bloods and urine analysis as well as x-rays. I was started on a course of immunosuppressants as well as anti-inflammatories and told I had a mixed connective tissue disease.
A few months passed and I was managing a bit better, in less pain and coping at university. I woke up one day feeling horrendous, I was in agony all across my abdomen and my eyes were a horrible yellow colour, I could hardly stand. My flat mate took me to see my GP who called ahead and had me admitted to hospital straight away. It was in hospital after a month when I was very drugged up on a combination of drugs including high doses of morphine that my family were told I may need a transplant, luckily while we were waiting for the transplant team to come and speak to us about being put on the list my liver started improving of its own accord (aided by huge steroid doses). It was at this point that my new consultant sat my parents down and told them they had sent some blood tests to London and they had all come back showing abnormalities. They explained about a chronic disease called SLE, about how my own immune system was causing my liver problems and by this point problems with my stomach which left me on IV feeding for 8 weeks.

A year after waking up with sore legs, I now have a diagnosis, a dodgy liver and lots of other medical problems but I am at home and living my life to the full, with lots of naps in between!


Grace's Story

I started to have symptoms on October 1993. I was 22 and had just graduated from art school.
I had swollen joints in my fingers, swollen knees. Every day something else was sore. I couldn't get out of bed, pull on socks, do buttons or fastenings. I had a summer job for a year working in a kitchen and the work was very physically demanding which did not help. Luckily my GP new about Lupus and within 3 months I had a proper diagnosis. I remember asking the nurse at my GP practise over the phone is ‘is lupus worse than arthritis?' She said yes and my heart sank.

Looking back now, I was so ill I should have been hospitalised. Instead I carried on working and being in pain, almost as a punishment to myself. Then I moved to London to study!
I have left out information which I still think is hugely relevant, the medics are not convinced. 2 weeks before the symptoms appeared, I started taking the contraceptive pill (Microgynon). Previous to this I was fit and healthy. In a running club, played hockey, did gymnastics. I was very sporty when I was younger. Now, I can hardly walk. At my diagnosis I was given a couple of leaflets and started hydroxychloroquine ( a lupus staple) and that was me.

During my time in London I did well at college, never missed a day, was almost symptom free and then, I began to get very depressed very quickly. I started to write down how I felt and it seemed to work as a sort of therapy for me. I can't bring myself to read it back. It is very dark and saddens me that I felt so alone. My symptoms grumbled along for years following my return to Scotland. In 1997 I went through the menopause suddenly and without warning. The effects of that unfortunately still appear now and again. It is something that I do struggle with.
About 7 years ago my symptoms got a lot worse.
My 10 year relationship ended suddenly and I started a new job. I then went on to go out a lot drinking and all the time losing weight. Bizarrely, in that year I had no symptoms. I began to feel well again, although I wasn't eating properly. Of course it all caught up with me and I ended up in hospital for the first time in Jan 2004. I have been hospitalised every year since usually in Jan following a hectic Christmas period. I believe my symptoms are made worse by stress. Then in Feb 2008 I randomly had to have heart operation to unblock a blocked artery! I have none of the risk factors for heart disease, unfortunately this is Lupus disease activity.

Following a 4 week stint in Jan 2009 (it was so bad I could not move a muscle and actually at times wished I was not around). Apologies for the morbid undertones, but I have never felt so low. It took nearly 6 months to start to recover from that stint in hospital. It was an infection they said.
I managed to get a place at college to study architecture, was getting fit by swimming and was feeling quite positive despite losing my job and having to use crutches all the time. Then, in Nov 2009, I had a heart attack whilst swimming!...I'll sign of for now before I get too morbid and frighten everyone off the blog. I'll be more positive next time.

Niki's Story

I'm 39. Towards the end of 2008/start of 2009 I was aware that I was very tired. I had previously been very fit - doing triathlons, adventure racing, mountain biking, British military fitness. My job was stressful, and I spend a lot of time travelling in the UK.

In May 2008 my father had died, and this was very traumatic for me. My mother has Alzheimer’s, and whilst she is well enough to live on her own, helping her cope with my father's death was a stressful time. I was also in a new role at work, and my boss had gone off with cancer, so I was left working unsupported.

So, at first, I thought it wasn't surprising that I felt tired. I'd had a very stressful year and most people would feel exhausted! By February 2009 I was aware that, along with the ongoing fatigue, I had some swollen glands in my neck. My friends urged me to see my GP, but I always replied that they would send me off saying it was just a virus. By April, I still felt tired. Exercise was difficult; I'd go out for a cycle and find that I had no 'fuel in the tank'. I decided to bite the bullet and see my GP. By the time my appointment came, I'd developed a rash on my hands and the back of my neck. The locum GP said 'you've probably got a virus' - come back in a month if you still feel like this. Despite the fact I reiterated how long I had already felt like that, he dismissed me. He also thought the skin rash was ringworm, which I was sure it wasn't.

After a few weeks I returned to the GP, and saw one of the regular GPs. I hadn't ever been ill (with no time off work in years and years) so didn't know any of the GPs in the practice, but I immediately liked the one I saw. He arranged some bloods, which showed that I had a raised ESR, which he felt may account for my tiredness.

After a couple of months, where the rash got steadily worse and worse (it felt like sun burn and covered almost my entire body), I was referred to a dermatologist. The dermatologist diagnosed urticarial vasculitis, and prescribed anti histamines. These only worked for a few days. Over the next few months, I was back and forward to the dermatologist, and eventually was on 4 anti-histamines, but still felt awful. I also developed symptoms of dizziness, arthralgias, myalgias, photosensitivity, fevers...... By late August I got myself signed off work (a month in the end) and went back to the dermatologist. He had chased up bloods he'd arranged on the first visit (May), and these showed positive ANA, DsDNA, Ro, La...... so off I went to a rheumatologist in October.
Initially the diagnosis was primary Sjogren's with a lupus overlap, but after a few appointments and a flare in November, the diagnosis is, and remains SLE, Sjogren's, urticarial vasculitis/hypersensitivity and benign hypermobility. I also have IBS type symptoms and the bloods have shown that I am strongly positive for coeliac disease, so I'm now awaiting an endoscopy to confirm or refute diagnosis.

In my job I was already well aware of SLE, and when I had my initial diagnosis of urticarial vasculitis, I researched and was aware that there was a possible link. Despite this, I was optimistic that I wouldn't have SLE - a colleague also had urticarial vasculitis and she had had SLE etc ruled out. So it came as a surprise when the dermatologist explained my blood results, and that it was likely I had a connective tissue disorder, but also a relief - finally I would perhaps get some treatment that would be effective and make me feel better, and the symptoms of tiredness etc weren't all in my head!

Since diagnosis, I think I've remained fairly positive, most of the time. I am very lucky that I don't have any major organ involvement and that the hydroxychloriquine sulphate and prednisilone is making me feel much better. The main issue I still have, other than minor aches and pains (mainly in muscles and tendons) is with ongoing tiredness. This, at times, I find difficult to deal with.

Naomi's Story

My awareness that something was wrong came some 12 years after I first had symptoms. This in itself is something I'm slightly embarrassed about; as, as I nurse you would expect me to have become aware at an earlier stage. However my medical knowledge allowed me to belittle my symptoms and deny anything was wrong.
As a critical care nurse, I looked after really sick patients and that was the parameter I used to measure the severity of illness.
From the age of about 23, I would suffer from episodes of chronic fatigue, joint pain, depression and general malaise. I put these down to viral illness caused by stress, being run down etc, as I had a busy life
During my first marriage when these episodes occurred, my then husband, would say, I was, lazy, attention-seeking and a hypochondriac.
After my divorce 8 years ago, these episodes became more frequent and severe and although at times blood tests showed high inflammatory markers, I was never tested for auto-immune specific bloods or referred to a rheumatologist. Hence I still attributed this to stress and being run-down. This was despite the fact that I needed maximum doses of paracetamol and ibuprofen every day just to get through the working day and that the pain and fatigue would only really ease after a couple of glasses of wine in the evening.
I moved house a fair bit between 5 & 8 years ago and with each GP I did mention my symptoms, which were concerning me at this stage. However the diagnoses varied from, ME, depression, Viral illness, hypochondria and even alcoholism.
After the birth of my youngest daughter 4 years ago, my joint pain, fatigue and malaise were severe and remained so. When my daughter was 9 months I was seen in surgery by an ex-colleague, who shocked at my decline immediately referred me to a Rheumatologist. I was diagnosed and commenced treatment at that first appointment and was also told that I had probably had lupus for 15 years. Initially having a diagnosis was a huge relief.

Josie's Story

My first experience of my illness came in Oct 2007 my fingers were always stiff and swollen in the morning then in Jan 2008 I started experiencing numbness in right thumb at base referred to Ortho consultant decided to take bloods and low and behold I have an ANA OF 1:160 and a positive ENA (Anti-Ro only) diagnosed possibility SLE got referred to Rheumatologist May 2008 and due to my younger sister having the disease for over 15 yrs plus WBC being low over a long period as well as my joint pain and funny enough Fatigue which I thought initially was down to looking after my ADHD daughter not thinking much about it away back then since then my WBC has really plummeted in May of this year as well as several new symptoms sore glands as if starting cold but it was constant day in day out and not coming to anything plus Thigh Muscles extremely sore and Oral and Nasal ulcers coming and going at moment Dr says I am straddling Lupus/Sjogrens.

Recently antids-DNA CAME BACK 26 when initially away back in May 2008 it was absent plus my PV was slightly elevated. Have to endure weekly tests as my bloods were really a cause for concern however on prednisolone 5mg hopefully short term as I WASNT WANTING THIS AS SEEN WHAT IT DID TO MY SISTER but glands etc are recovering really nicely. Now, what a difference… having these symptoms were what I would describe as exhausting

Anna's Story

It seems Lupus people have always been 'sickly’ even prior to diagnosis. Mine was a mixed bag really. As a child I had Cancer when I was 8 and then a re-emergence at 11, consequently, my formative years were dominated by illness. From the surgery and radiation to Chemo, I developed a chronic Kidney condition (I have never associated this with Lupus, perhaps I should??)Kidney function fluctuates between okay to rubbish! And until I recently, I was plagued with UTIss and Kidney infections (now permanently on antibiotics).
However, I still see my late teens and 20ss as 'healthy times' the times I did what most people do at this age, I partied!

My late 20s and early 30s were plagued by a series of miscarriages I had 2 miscarriages at 10-12 weeks, then twins at a later stage. Since I was moving around the country, no one had made the connection between Hughes Syndrome and miscarriage. It wasn't until 1998 when I had my first and only child that there seemed to be a 'plummet' into ill health. Having had a very difficult pregnancy - Placenta Praevia grade 4, hypotension, UTIs, ++++ protein and anaemia - consequently my son was 8 weeks prem and very poorly as was I. I was in intensive care for 2 days due to large blood loss and my boy was in SCBU for a month - his lungs had not developed and had a double Pneumothorax.
Almost immediately after the birth I became ill. plagued with joint pain, blisters on the skin, ear, sinus infections (usual UTI's) and migraine and a despairing depression.
Then in 2003 I had a major stroke. I was a high school teacher and it happened in a lesson, I felt like I'd been hit by a baseball bat!
26 August 2010 23:51

Lupus means you tend to have lots of different things wrong: UTIs, ENT infections, fatigue, joint pain, skin pain, mouth ulcers etc. etc. I never imagined, nor did anyone suggest that they were cause of 1 disease, not until the first major Stroke. Being 35 at the time, hundreds of tests were done and they decided definitely Hughes, probably Lupus.
To gauge where I transited from well to not well, it was definitely at this point I had to concede that all was not well and things had to change.

Prior to the Stroke; I was a teacher and Faculty leader, hard-working, loved my job and very ambitious, I had decided that being a High school Headteacher was my goal for 40!
I had also decided that I would like to try and have more children, maybe sail around the world and cure Cancer was on the list somewhere, but you get the idea.

I tried to return to work (after an absence of 11 months) and for almost a year, sort of succeeded, but I had changed, my attitude to work vs lifestyle and wellbeing balance had changed, and the dawning realisation that at this point I would not have the energy and physical capacity to attain the goals I had set myself. This is probably the most painful part of my journey, accepting the things I couldn’t and could never do and making a new path for myself.

During 2004-2007 I suffered major bouts of depression, displayed manic behaviour, acted like a recalcitrant child at times. For several years I was angry with the world and with my own body, I despised the changes in my appearance – blotchy blistered skin, massive increase in weight, brittle hair with a lot of hair loss (my Thyroid gland decided to stop working too!) I was appallingly self piteous and not much fun to be with.

I started a new career in 2005 as a LA Consultant for Secondary Schools, much less pressure, and more flexibility. Last year I became a School Improvement Officer for [name] Council and they have been wonderful in their attitude to disability and have allowed incredible flexibility in the way I work. I ALWAYS put the minimum of 37 hours per week in, and since I can do a lot of work from home, I usually end up doing 40-50 hours per week.

I don’t have a list of things I’m going to achieve before I’m 50, my ferocious ambition
has been tamed significantly and now, I have no idea what I’ll be doing in 5 years time and I’m not going to worry about it either.

Lily's Story

I have had a diagnosis of SLE for about 2 and a half years. I was treated for rosacea for a facial rash prior to that. With hindsight, I was displaying SLE symptoms in childhood! I had a single seizure in 1996 which was diagnosed as epilepsy, and I had 10 years of anti epileptic drugs. I couldn't understand how one fit could make you so exhausted for several months. I then got diagnosed with hypertension, and had various x rays and scans. I couldn't understand why friends with hypertension didn't feel exhausted all of the time. I was then diagnosed with hypothyroidism. Friends on thyroxine seemed to be fine and full of life. I once again couldn't understand how I felt permanently exhausted. The "rosacea" outbreak that I was treated for two years, just wouldn't clear up, and I went to a dermatologist. She knew instantly what my facial rash was, and was able to give me some sort of explanation as to other symptoms.

Isabel's Story

From being a teenager I had bouts of tiredness or feeling like I'd been hit by a truck without the bruising and I seemed to need to sleep a lot even though i was very active playing sports most days. My family just thought that I was trying to skive off or was just being lazy. I've suffered from bad headaches since being a teenager too. In my late twenties I went to the doctor on a few occasions feeling generally unwell but after standard blood tests were normal I was told that I was 'just depressed' or 'stressed' due to work etc. My mood swings got worse in my early thirties and I attempted suicide twice in one year - I didn't want to hurt myself I just wanted to sleep forever (I was still single then). I tried anti-depressants but they didn't work.

In 2001, the illness showed itself clinically when I was 11 weeks pregnant - optic neuritus in both eyes. Tests showed white lesions on my brain and something not quite right with my lumbar puncture and visually evoked responses but nothing conclusive. After my daughter was born and I asked for the all clear to go to Turkey to live with my new husband, my neurologist shocked me by saying "If I were a betting man Miss....I'd say that you'll develop MS within 5 years. Here's the MS nurse". I buried my head and refused to accept it as in Turkey I was the sole income earner and so I couldn't afford to be ill. I still had headaches and aches and pains but they came and went.

In Aug 2006, I had pins and needles down my left side and it felt heavy. Over the next two months I was tested for MS but I was told if it was MS it was very atypical but I was getting worse - extremely tired, dragging my right leg, posture problems, speaking problems (sounded like a deaf person), aches and pains that came and went like the switching on/off of a light, freezing feet etc. etc. Finally they did an ANA blood test which proved positive and then sent me to a rheumatologist who diagnosed SLE and hospitalised me for intensive corticosteroid therapy and cyclophosphymide therapy.

We decided to come back to England due to my illness. The rheumatologist here wouldn't accept my SLE diagnosis from Turkey so he sent me to a neurologist who told me that he didn't think I had MS or SLE and that I should consider depression. I was so angry that I swore at him but I quickly apologised. He wrote an in-depth 5 page report on me for all my doctors with the opening paragraph outlining my depressive history and suicide attempts - which doctor would read any further eh? I, with the encouragement of my GP who had laughed at the report and said you're not depressed, wrote back and told him that telling me or my family that I have a mood disorder is like telling the Pope he's catholic and that I would go to a psychiatrist if I felt depressed. Anyway, the rheumatologist referred me to St Thomas's in London. I had to wait 7 months, in which time family and friends began to doubt my illness (You Don't Look Sick - see website). In Sept 2008, within 30mins of seeing Dr [name]at St Thomas' SLE unit I had my diagnosis, I was a bit speechless as I'd been fighting for it in the UK for so long (1 year)but at the end of the day it changed nothing, as people still doubt what they can't see.

University of Hull | School of Social Sciences | Transitions to Illness