any advice 💜

[Claireeeeee]

my mum had seronegative lupus by the time she was diagnosed it was too late and we sadly lost her in June 2019 , after having Covid in 2020 I started showing signs of lupus or what I knew to be lupus , my ana is also negative the same as my mum so I’ve been diagnosed with fibromyalgia instead but I don’t know what else I can do anymore I’m in pain everyday and the medication that should help fibromyalgia isn’t helping me at all 💜

[ShannonB]

Claire I just had to write to you because your post made me sad. I’m so sorry about your mum and that the medical system offers such poor support for our illnesses.

I was diagnosed with lupus as a child but have been mostly seronegative for years. I have struggled with getting the right treatments at times but generally have found if you get the right rheumatologist he/she will treat the symptoms.

I encourage you to keep pushing and standing up for yourself, taking your story including your mum’s history snd trying to get a second opinion. Keep a log of your symptoms and take it in writing to your appointments. I really hope you get the support you need.And stay on this forum with us, you may find it helpful.

Sending hugs.

[Claireeeeee in reply to ShannonB]

it really is awful and I’m terrified after seeing how quickly her illness progressed I worry all the time they same thing will happen to me but I know I am pushing for a diagnosis much quicker so hopefully it is caught sooner, I have an appointment to go private for dermatology to hopefully get some answers I’ve heard of some people managing to get a skin biopsy that will confirm lupus, so I am really hoping for that my skin is extremely sun and uv sensitive even the lights in my workplace cause my skin to flare up so I started using factor 50 suncream while working and it has made such a difference to my skin, I called the doctors yesterday and explained the medication I was given for fibromyalgia wasn’t helping and I felt was actually making me feel much much worse, so I was adviced to come off of that medication slowly (40mg amnitriptaline) I wish there was an easier way to be diagnosed i saw first hand how difficult it was for my mum fighting for a diagnosis she had to see 4 different rheumatologists before getting a diagnosis, my dad is trying to get hold of her medical history so I can take that as proof that my mum had the same symptoms as I am now having and hopefully that gives a push , thank you so much for replying I really appreciate it 💜💜

[ShannonB in reply to Claireeeeee]

It sounds like you are doing all the right things -- I'll be thinking about you and do hope you'll let us know how you get on. Sending a big hug.

[Tiggywoos]

Claire I am so so sorry to hear you lost your mum 😔. Shannon has given you great advice . Im so glad you’ve reached out to this forum . Emotional support is just as important as the medical stuff . Sending you big hug and strength xxx

[Claireeeeee in reply to Tiggywoos]

Thank you so so much I really appreciate it 💜💜

[tiredmum]

I am so sorry to hear about your mum, it’s so sad.

I too have seronegative lupus. It took me 10 years to get diagnosed. I was told I had fibromyalgia and rheumatoid arthritis and cfs. However I had a friend with Lupus and she told me to keep fighting as my rashes, sores and symptoms were the same as hers. So I took photos of everything and kept a diary of all my symptoms. It wasn’t until I started to lose my eyesight that I got referred back to the rheumatologist with anti phospholipid syndrome when they started to show interest in my other symptoms. My consultant diagnosed lupus and sent me to St Thomas’ in London for confirmation. I cried with relief .

What I am saying is don’t give up, get a second opinion, you will be heard x

[Claireeeeee in reply to tiredmum]

I am definitely keeping a note of everything and pictures and videos of rashes and swelling and nasal and mouth sores , it’s so hard to keep fighting but at this point I don’t know what else I can do 💜

[dg70]

I am seronegative too and I think up to about 30% of us can be. If you haven't already, you need to get a GP referral to a Rheumatologist and see if they can get a positive DSDNA out of you. That was my only positive blood test and it was enough for a diagnosis. DSDNA can go up and down according to inflammation but looking at you you seem to have some kind of inflammation going on on your skin. Only a Rheumy can order the DSDNA blood test not a GP. It's about your only route now as it was for me. If that is negative then you have to keep a symptom diary and pictures and if you have lupus just wait for more symptoms to appear and that all important positive blood result. I know it's frustrating but if you see a Rheumy they may prescribe hydroxychloroquine if you display enough symptoms. Or list you as connective tissue disorder for the moment and you still get the hydroxy as far as I know. It's not a diagnosis you really want but if you have it you need to know especially with it in the family.

[Claireeeeee in reply to dg70]

I was sent to rheumatology at the start of February and ive just been told all of my bloods are normal and they think its a dermatology issue not theirs and diagnosed fibromyalgia it’s so hard I wish my mum was here to help me with all of this as she went through it aswell it’s just awful we have to fight so much for help medically when nobody will listen 💜💜

[dg70 in reply to Claireeeeee]

Bless you. I did my fight in my 30s and 40s to get diagnosed and its a long road. Fibro is a start and maybe you have it but keep an eye on the symptoms you get and log every one. Dr Wincup recently said in a presentation for our Lupus group that it may just be that you don't always have enough symptoms 'yet' or the positive bloods. Fatigue is a big one, all day every day. That is a big sign you have inflammation. Also rashes and pain, especially a rash that is just confined to your cheek bones. Mine only started there at 52. Before I was a bit like you with occasional red itchy hot rash all over my cheeks. A hate of being in the sun and feeling worn out and washed out if we sit outside on a hot day for a short while, most people love the sun and feel good but not us Lupies. We are all so different in our symptoms that its hard even for Rheumys to work us out. There is also a whole heap of other autoimmune conditions, like Sjogrens Disease, Rheumatoid Arthritis etc.. I went private in the end and got diagnosed that way. I'm sorry to say it will probably be a long road for you but you at least you have an initial diagnosis. Took me 15 years and to be honest it's a relief to be diagnosed but also it's not what anyone wants as it brings all sorts of problems too. It must be hard when you don't have your mum to champion you and help you but be strong, maybe join a support group. Lupus UK have many online and in person groups with differing ages. As your mum had it it might help make you make sense of what she had if you listen to others and hear doctors and other professionals presentations. I have a daughter and granddaughter now and hope I'm around for a while longer to enjoy them but its hard with lack of energy and joint pain to do a lot with them. Listening to you I will squeeze every moment I can whilst I still have some energy to do so. Do look after yourself and rest when you need to it helps so much not to overdo things. Let me know how you go. xxx

[Claireeeeee in reply to dg70]

Please take all the time you can with them as much as you possibly can , I wish I could talk to my mum even just one more time , I was 17 when she passed and she was extremely ill since I was 14 I used to get so jelous of girls who still had their mums and it’s the worst thing I’ve ever been through in my life , I hope I get answers at my dermatologist appointment but I really appreciate all of the advice 💜💜

[dg70 in reply to Claireeeeee]

I understand my niece lost her mum recently and she was 32 and she finds it so so hard. At least your dermatologist can examine your skin and maybe even biopsy if needed. I'm seeing one on Monday for allergy patch testing so they know their stuff. Hope all goes well and just take good care of yourself.

[Claireeeeee in reply to dg70]

Thank you so much❤️❤️

[StriatedCaracara]

Some of us here have a Undifferentiated Connective Tissue Disorder (UCTD) diagnosis rather than an SLE diagnosis.The issue is finding hospitals that accept Lupus-like UCTD patients.

With my strong positive ANA and a dozen odd symptoms I was told by my local hospital trust that symptoms were in my head, that they would ask GP to treat me for anxiery and that possibly I had fibromyalgia. The issue was I had no second positive blood result.

Clinic letter though then said it could be an Undifferentiated Connectiive Tissue Disorder, but that was too difficult to diagnose. He also added that photos could not be used as evidence.

I guess the communication changes depending on who is being communicated with but it was obvious they did not want me as a patient.

There are some Trusts that list UCTD on the conditions they treat on their website. As there were none local to me I decided to go private, without insurance. I was treated with hydroxychloroquine and symptoms improved.

Possibly email the London Lupus Centre with the details included here about your mum. They might be able to suggest a rheumatologist there. Although this is private each consultant is linked to a different NHS hospital, most in London, one in Southampton, and remote technologies are used as well as face to face.

I believe in Mancester there is research into lupus spectrum UCTD and if you are in the north maybe it is worth contacting the NHS Centre of Excellence there and asking if they will help.

What does your GP think of the response you had? Mine knew I needed to be under the care of a rheumatologist and said he would refer me anywhere in the UK to get the help I needed. They know what is going on but it is difficult if hospitals don't help.

[StriatedCaracara in reply to StriatedCaracara]

On the 'Diagnosis' page of the 'Lupus UK website' is a talk by Dr Arvind Kaul where he scores different tests, and says how important it is to listen to reported symptoms, that it is not just about blood tests.

It is a wonderful talk - if only all hospitals worked this way.

There are many here that are having or have had a difficult journey. There are ways through it all, and people here can give advice.

BTW it was covid that accelerated progression of my symptoms. I think many more than we know have systemic autoimmunity following covid. Resourching here may be developing at the moment - locally here there is a community rheumatology nurse that people can see who are affected this way, who then helps with follow on tests and referrals. I never tried this though as not around three years ago.