Hello, this is my first time posting so please bear with me.I am a 40 year old female.
I was diagnosed with discoid lupus in 2005. Then a few years later, lupus panniculitis which is quite rare (fatty lumps under the skin which leave atrophies. (Mine are on my face, breasts, and arms).
For the last 4 years I have had lots of health issues which I describe as flare ups of something unknown.
I have various symptoms during these flare ups and they seem to differ each time. They can last for a few to several months and then tail off for a couple of months then flares up again.
Symptoms have included:
Stomach pains
Nausea
Acid reflux
Bowel problems
Upper back/neck pain
Pins and needles/numbness/weakness in hands and feet
Wrist pain
Dizziness (more like vertigo than head rush)
Brain fog
Fatigue
Dry mouth
In the last few weeks I have developed post nasal drip along with a nasal sore and blocked nose on one side. (I dont know if this is a cold but it feels different I anything I've had before).
I have had so many investigations all amounting to nothing which is obviously good but i feel so alone because to everyone else I look well......but I really don't feel well. I feel so drained most days during a flare and all I wanted to do is lie down. (I have 3 kids it's just not possible!!)
I saw a GP this afternoon and once again feel like I'm being laughed off with health anxiety.
A rheumatologist I saw two years ago said he was 100% sure I do not have systemic lupus .
If you have systemic lupus, what are your symptoms? Are they similar to mine or completely different?
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Starshine83
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I’ve had various symptoms of SLE since I was in my mid 20s, I’m 44 now. I was diagnosed with SLE in 2015 but I battled with doctors who didn’t seem to accept this diagnosis for years, finally I was accepted as a patient at Bath Rheumatic Hospital last year and it’s changed my life.
My symptoms during flares used to be different each time, now they’ve settled into a clear pattern.
Now my flares involve fatigue, fever, night sweats, pain my shoulders, neck and hands and feet, hair loss , numbness in hands and feet, inflammation in chest muscles, facial rash, anaemia.
I used to get raynauds, mouth, nasal & genital ulcers, vasculitus and weight loss.
Rheumatologists and GPS have said all sorts of unhelpful things to me over the years, like ulcers being more likely to be STI, chest pain out down to anxiety, mention night sweats in your 40s and everyone jumps to menopause!
I started on high dose steroids and mycophenolate last year which was increased to max dose few months ago when I had suspected blood clot - I mostly feel better now that I did in my 20s.
But my SLE led me to being admitted to hospital, it’s affected my kidneys, blood vessels and skin - I don’t think his would have happened if I’d been treated properly earlier - so please go back to your GP, ask for a second opinion or as I did a 10th opinion.
It’s a struggle but you’re already stronger than you’ll realise. Xx
Thank you so much for your response.How do you get accepted at the Bath hospital? Is it a case of being referred by your GP or other specialist as I have often thought about being referred to Bath. Do you have to already have a diagnoses of systemic lupus or can they diagnose?
I get a lot of similar symptoms to you. I have pain in my neck and upper back mainly left shoulder blade which causes tingling/numbness in my hands and feet, hair loss and anaemia for as long as I can remember, the fatigue is awful....
The fatigue is horrible, the word fatigue doesn't do it justice.
I changed my GP practice in 2021 and my GP has fought hard to get me referred, she started by referring me to other hospitals in Devon where I live, these were all rejected as I had a consultant.
I then contacted Lupus UK directly and asked for advice, then I wrote to the hospital myself who agreed if my GP completed some paperwork which she did. It took about 12 months from referral paperwork to first appointment. My GP also had to sign shared care agreement to dispense medication and do 2-4 weekly blood tests.
The standard of care is very very different, recently during blood clot incident, my GP was worried about me having a stroke , consultant from Bath was on the phone within an hour, and appointment arranged for 72hrs later. It means travelling for 6 hrs to appointments but so worth it.
I wasn't joking about 10th opinion - I saw 9 different rheumatologists in Devon over 8 years, I had all the lupus blood markers, symptoms AND a diagnosis - but they chose to ignore it - sounds harsh but its true.
Find a GP who will sympathise or contact the practice manager, do what ever it takes to be taken seriously.
Wow you've had quite a journey then! I also love in Devon! I have an appointment with my dermatologist coming up so will speak to her but since covid my regular one has been replaced with different ones who have no idea about my condition. I never discuss my lupus with my GP as firstly she is rarely there and secondly nobody gets it as it's so complex so I just don't bother. I will see what comes from my next appointment with my dermatologist and go from there but although I'm complex, I'm not sure I'm complex enough to be referred to Bath!
Thank you for you advice and help. Hope you are feeling ok at the moment x
I my goodness I thought I was far away with a 45 min drive. I will look at my journey differently now. I only moved here from london a few years ago and just happened to strike it lucky. I didn't know they took referrals from far away. I have seen over the years that a good Rheumatology department can mean almost life and death so I get why you travel so far. That's some time to be travelling to Bath 31 years or did you live here before?
Sorry about your situation I have been diagnosed since 2005 with SLE and have been experiencing the same symptoms recently. I am told I am in remission however I don’t agree, I find that since covid doctors and consultants do not really care anymore and just fog me off whenever I tell them how I feel so I just keep my feelings to myself. The NHS is not good anymore and it’s luck nowadays
I completely agree. They don't want people clogging up their pathways so send us all away with no support whatsoever. It's so frustrating. So greatful for finding this support group. I instantly don't feel as alone anymore.
My 'new' rheumatology consultant said to me positive ANA doesn't mean anything I needed to show all other my markers as well.🙄 You just did not know how I was feeling when she said that . She totally dismissed all those years of SLE flare ups during clinic. Said she wanted them biopsied proof that they are SLE🤦🤷 . She also will not put me on alternative drugs because I hv come off Hydroxychoroquine.
I take mepacrine which I only discovered a couple of years ago and it has made a big difference! I do still take the hydroxychloroquine with it though. Surely they should let you try something else!! When I first had a positive ANA it was just oh you have a positive ANA but that could be the same for anyone without lupus! That was all that was ever said about it to me.
Sjogrens may be a possiblity? I have sjogrens and sle and joint hypermobility syndrome. I have had dizziness for years and just found out I have no proprioception (google it) I'm getting physio and have to work within my limits. I find it hard to adjust height and slopes and where my body is in relation to the ground I'm walking on etc. Once you have one autoimmune condition its not unusual to gather many more.
so sorry 🤗 I have had your symptoms and no diagnosis ,indeed not been seen at worst but have had undiagnosed problems for over 6 years and totally empathise. I have not been taken seriously and fobbed off but I think its just a battle to find someone interested and that is so hard when already so unwell but if and when its a matter of keep pushing when and where you can, we know ourselves what's going on with us and we just need someone to see it, so when fobbed off or laughed off as hard as it is and believe me I know, you've got to just keep going and look elsewhere if you can. you will not be alone here for support which will hopefully help on your journey for answers, Its interesting you say about coming and going as mine do too and sometimes feels like I may be getting better only for it to return. I understand your loneliness its a hard place to be and feels so isolating but you are not alone and I hope that is of some comfort . Best wishes xx
Thank you for your comment. I have had a really hard week with symptoms. I have driven myself crazy thinking I have every different cancer going. I have been bloated for around 2 months and this last couple of weeks it has developed into stomach pains, bowel problems, pain, reflux and all sorts of symptoms. I also still have a weird throat thing going on. I just don't understand any of it. I feel that I got laughed at by a Dr that I saw last week. He did offer bloods and stool samples which all came back normal except I am anaemic which is totally normal for me and has been for as long as I can remember! He prescribed iron tablets which I can't tolerate!!! I'm going to speak to a different Dr next week and probably try and get my lupus appointment brought forward to discuss with them. Although they specialise in dermatology so....Its such a lonely place. I hope you are doing ok. What are your symptoms?
I have had many it all started with terrible knee pain, then my hands were blue like vessels leaking then raynauds, uticaria, livedoid skin mouth ulcers itchiness rashes hair loss, bloated abdomen, face dropped they said bells then not and suspect not as extreme leg muscle and arm weakness, shoulder hip ankle wrist pains swellings, suspected erythromyalgia, now arm and leg muscles shrinking, weird skin dents, raised veins breast, thyroid problems (high tsh) nausea, constipation and urinary issues, cramps in feet and calves , high heart rate, dry skin, facial lesion, skin like psoriasis,breathlessness, cant open fingers or bend toes, sudden pains in hands, weird body feelings, severe fatigue brain fog you name it really so much over 6 or more years and with nothing in bloods and not seen or looked at in much of that time and height of things have had no help or diagnosis, hydroxy in beginning helped hands but only had a few months and had high dose steroids for a week last year which helped but now just feel bad again and had post menopausal bleeding. did have iron sit d and antihistamines in journey but thats it. I have all problems re skin and visible things documented in photo but much never seen as no interest from local rheumy and they just do not seem to acknowledge and say apart from inflammation nothing in bloods so im left to it but am coming to my wits end to be honest. my right arm left leg and face getting skinny and now family becoming concerned. I cannot get anywhere locally , they say nothing when seen which is about 3 times in 6 years by rheumy yet I have so much in photos ,they just deny what's there and I guess say ununifying because of bloods but its ridiculous for me now. I had so many symptoms all flaring at different times and with the help of the steroids and hydroxy I often wonder how well I could be feeling given a decent specialist and treatment but fear I wont find locally. I feel totally neglected and can even place things, long before the journey began that may also be linked, its been a long time and a slow tough ride with flares of and im mocked when I say I have flares of symptoms. ive not seen cardiology or ophthalmology or had skin or muscle biopsies as said or lumber punch just signed off after seen all the time. I used to doubt myself but now im certain there is a diagnosis there rite for the right specialist to see. Im again deflated and exhausted and understand the loneliness of it all. Apart from here on forum I dont talk about it really except for a couple of private chats as I feel with the awful neglect from local hospital and gp and my no diagnosis leads people to think its me but its not I am certain now and when I look at photos from back then to now it saddens me how bad ive gotten and been. Even when I look through all the problems of my posts. I was unseen in covid when at worst and now crisis and I get nowhere so resigning myself to just have to self help as have but its getting harder to do. I think the only thing I haven't had for years you list is the dizziness but I had all that before what I thought with hands and knee as the beginning of my journey, my chest is often bad and probably a carditis of sorts, blue lip when breathing bad and told probably asthma flippantly and just get nowhere. I have a complaint ongoing but even that keeps getting extended and so just wait and wait with nothing being done. I have an ophthalmology appointment next month and just prey that will shed some sort of light or I have nothing else and a gp I wont see as he has let me down and says symptoms are strange, he dont know where to send me, and when I said they didnt have my back and push for me and symptoms with rheumatology they told me they have no power over them. Leaving me with no power to do anything as you can only get seen through a gp. The people who get care I just dont know how, its just not available that I can find locally, I cant believe I used to think I was unwell when I got flu or a virus as they used to tell me every other week before all this began but now I sadly know what it is to be unwell and with no health service I do not apologise for saying how scared it is.
I wish I had an answer for you but you see I am in a bad position myself and it is terribly difficult but you have my empathy and I urge you to find help and hope your health service is better than mine. 🤗🤝xx
I was in same boat and emailed London Lupus Centre. I asked if any specialist there might see me, and they provided names. Onced they replied to my email with names (they provided three based on my symptoms) I phoned, as had questions (eg which London NHS hospital they each were connected with if later went back to NHS care, and which online technology they each used like Zoom.)
I needed face to face for diagnosis, and that was a really good appointment, but first appointment used Zoom.
Family member helped me get there, as felt too sick to travel on my own. Also thought it would be good to involve them as they were getting similar things going wrong also, and my symptoms, when previously very well, were crazy..
I did not need my GP to refer but did get blood tests done through GP earlier before rubbish local NHS referral where rheumy said my strong positive ANA was not enough, that even ESR not raised much.
Local NHS rheumy said I had not got an autoimmune disease, like Lupus or Sjogrens, as I walked in through the door, before any discussion of symptoms or examination. In clinic letter they added that photos could not be used for diagnosis.
I had most of the 11 symptoms used for diagnosis but asked me to get GP to do separate referrals to other departments.
This was in 2021 when it was difficult getting anything progressed and it was a ridiculous thing to say as GPs really under stress.
My guess is they have standard silly answers to get us out the door.
Anyway, even though I'm not in London, thought best for me to take control and go straight to some of the best people. I learnt many here had gone to London Lupus Centre particularly from Wales
(GP had said he would refer me anywhere even a completely different part of country, but I thought response might be similar at another NHS hospital, and I wanted to survive, so took it in my own hands.)
No insurance, never gone private before but I think they can use best practice that NHS at the moment can't because of management, and incentives geered to cost saving, not totallytopatient care.
Many at London Bridge I think were at StThomas' with Prof Hughes - all extremely experienced.
I needed to send quick email giving overview and said I felt I needed to try hydroxychloroquine to see if it worked.
And amazingly it did...
What does that say?
Local NHS hospital now takes me seriously too but can't face being referred back there as I feel the person I saw there was a fool and said anything that was convenient.
I don't think they are allowed to work logically but just told from on high what to do to reduce caseloads.
However in my jobs I always questioned things that were wrong.
These people put their own careers first and don't care enough - so say rubbish - that really causes incredible stress.
Management promotes this behavour and they get rewarded for it and rise to the top when really they should not qualified as patient care so poor.
They are seeing people regularly that just have positive blood results no symptoms. This is fine but when the situation is reversed people are being discharged in an aweful way.
I guess a lot is linked to research and they need measures that can be used like anti dsDNA...but processes and mechanisms still need fleshing out to find better markers.
Tests are not as reliable as we think either and really they should use more realiable methods, even for these. GP said NHS don't repeat tests like these, if negative first time, so he could not reorder.
I realise now I had had CLIFT anti-dsDNA testing which is not so realiable:
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Some things that have helped relieve my symptoms
Friends...off hydroxychloroquine, what do you think?
Dreadful back pain, is this a symptom?
My tendons/muscles feel as they are pulling off the bone
WHAT LED TO YOUR LUPUS DIAGNOSIS?
