Help!! Am I losing my mind?: Hi all, I've been a... - LUPUS UK


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Help!! Am I losing my mind?

Hayleybabes1982 profile image
22 Replies

Hi all, I've been a lurked for some time and have found a lot of posts helpful. For over 3 years now I've been having lots of random symptoms, aches, pains, minor small joint swelling, chronic fatigue, b12 deficiency, hair loss, fluctuating weight, chillblains, ? Reynauds...the list is endless. Bloods after bloods and apart from one high esr (or crp, can't remember which, again another symptom, bad memory) and the b12 diagnosis nothing is showing up!!. Spring this year, 1st nice sunny day spent 20 mins in the garden, every bit of me that was Sun exposed was covered in a red, itchy angry rash, arms feet neck ears!! Horrible. OTC steroid cream wasn't touching it. 10 days later, I'm feeling terrible in general and bam, the worst cystitis. Went to go who referred me to dermatologist and rheumatologist.

Saw rheumatologist today, and after only 5 mins, without looking at the pics of the rash, or really taking any other history, and having oh looked at my finger nail beds, discharged me as my historic bloods were negative for lupus and so it deformed wasn't. My gp ( who has now left and was the only one who had ever actually taken the time to listen and realise there is something going on) said that she believed my symptoms may well be caused SLE. I thought today I may get some answers, but ended up sobbing in my car. Still waiting on rheumatologist appointment but am now worried whatever he writes in his notes will skew their opinion. He'd diagnosed (or rather undiagnosed me) before I'd entered the room... I just don't know what to think anymore, am I in fact going mad. Or is it possible to have lupus without positive blood tests? I always have the tests weeks after symptoms have died down. I have chronic cystitis/ bladder weakness too which is a real pain daily.

Sorry for the essay, needed to get today off my chest x

22 Replies
Hayleybabes1982 profile image

That should have read saw the dermatologist today. God my head's a shed lol

waxandwane profile image

Hi Hayley, I haven't posted for a while on here but it is a very helpful site. My comment would be take a list of all your symptoms with you to the rheumatologist appointment, if necessary to leave with them. They may come up with other stuff but if you're not happy you should ask for a second opinion. Hope it goes well if there's something you don't understand ask the consultant to explain his rational. I have similar symptoms but they haven't decided if I have Lupus yet that's been 3 years. But symptoms are Lupus like ....

All the best


Penelope-Mary profile image

Hi Haleybabes

You are not going mad, just feels like it.

As you'd have noted.....yours is not an uncommon problem.

It can take years to be officially diagnosed and with a change of consultant or even it seems, a change in mood of same consultant, the diagnosis can be whipped from underneath you or altered!

It's not funny I know, not at all. And blood test results do not bear testament to how you feel. It's just not an exact science as yet. SLE has to meet certain criteria and too many consultants aren't willing to see the whole picture: you as you present.

So maybe if you don't agree with what he writes in the letter to you , find a new GP, and ask for another opinion and don't produce the previous rheumatologists letter. Hopefully your new GP will write a brief 'fresh' referral.

You'll need a new GP for treatment of cystitis too.....

Hugs, you must be feeling defeated and exhausted



misty14 profile image

Hi hayleybabes

It certainly is possible to have lupus with negative bloods!. So sorry you had such a tough dermatology appointment. Hopefully your Rheumy one will be better and you get chance to show your rash photos. Just to prepare you, not all Rheumies believe in sero- negative Lupus so you might have to seek another opinion!. Fingers crossed you don't and you see a very open minded one. It can be a long tough road to diagnosis where persistence pays off. Let us know how you get on. X

Hayleybabes1982 profile image
Hayleybabes1982 in reply to misty14

I've been waiting since February for an appointment with the rheumatologist, had a letter to say I'm on the list...I have a pain management appt next month for the back pain and joint pain, maybe they might be helpful and chivvy the rheumatologist along...

misty14 profile image
misty14 in reply to Hayleybabes1982

Hi hayleybabes

It's awful waiting times are getting longer and longer!. Hope you get a Rheumy appt soon. You could ring and ask them. Good luck for pain management next month. I go and they've been very helpful to me. They treat pain in lots of different ways. Let us know how you get on. X

PMRpro profile image

My experience of dermatologists hasn't been encouraging either! They aren't interested unless it is skin cancer.

I was also referred for a rash, as query coeliac disease in the form of dermatitis herpetiformis. She was downright rude, refused to order a biopsy because I had no rash - of course I didn't, I had been avoiding the wheat that caused intense itching that reduced me to tears and stopped me sleeping! No-one had told me I needed to have the rash - since the diagnosis depends on finding the marker in NORMAL skin, not in the rash, it shouldn't have mattered. The nurse asked should she arrange another appointment - no, it wasn't anything serious... In a very nasty tone of voice.

misty14 profile image
misty14 in reply to PMRpro

Hi PMPro

I've just had a horrible dermatological consultation despite having a suspect lesion for skin cancer!. I think it is their overall attitude in any given hospital. Sorry you had an unpleasant time. Hope your keeping well. X

lorna118 profile image

hi, just read your post, I am in process of wanting tests done for lupus as I am certain I have it, I understand through research that it is very hard to get a diagnosis , many different tests are needed, it's finding the right doctors ect who will take the time to listen and send you in the right direction, blood tests alone is not enough, it's a very serious condition but kept checked and medication you can live with it so I have read, it's very frustrating when you know there is something wrong but you don't know what, good luck, am happy to talk about it with you more. Lorna.

justjan1944 profile image
justjan1944 in reply to lorna118

Lorna it is enough when you have an antinuclear blood test or a biopsy of a skin lesion if you have skin involvement.

Hi - hang in there you're not going mad! I've had five years of being wrongly diagnosed with RA, and then in January this year another rheumy said I might not have RA and definitely did not have a connective tissue disease - despite very high inflammatory markers and the fact that I was on steroids when he tested my blood. He was adamant beyond anything I've ever come across about this. When I timidly asked at the end if I could possibly have Scleroderma he said "NO - you do NOT have that!".

Then I moved house and was referred to a new rheumy in a new hospital. My ANA showed up positive for Scleroderma only five months after the overly assertive rheumy had dismissed it - and I was advised to have a lip biopsy which came back very positive for Sjogren's Syndrome - which my new rheumy feels is probably my primary connective tissue disease.

Re the rash - I have suffered similar on several occasions but the dermatologist told me it is Rosacea in my case. They do look very similar and I had a biopsy of rash on my neck that the dermatologist was convinced was Discoid Lupus. But it just came back for Eczema and some kind of autoimmune cells (IgM) which the next dermo felt was Rosacea. This skin disease usually responds very dramatically to sunlight too so your dismissive rheumy may have felt this was what yours was? But Rosacea is also very common in people with autoimmunity so isn't to be dismissed either.

Princerogers777 profile image

So sorry you're going through this lupus would show in your blood even when you weren't having symptoms I would assume although the inflammation part would not be there stay rub down with sunblock 50 + face arms neck everywhere you have Exposed Skin wear a big hat umbrella whatever you need to in the meantime try to find a good rheumatologist that will listen to you and express your concerns have patience it can be very frustrating I know I've had lupus for 10 years I did not have to go through all that misdiagnosis they diagnosed it right away I was borderline it's kept at Bay with the medication but I still get sore joints here and there fatigue always and chest shoulder neck pains a lot I wish you the best to keep us updated soft hugz

GERY profile image


Hayleybabes1982 profile image

Wow, I'm overwhelmed with everyone's caring responses. Thanks so much. I just really needed to get it off my chest. I've had so many differing symptoms for so long. When the b12 came back low I thought that was the cause but I apparently didn't have antibodies so was left after the first 6 injections, until the gastro I'd seen for chronic gastritis wrote to them telling them that in around 30% of cases of autoimmune b12, bloods are negative. But the regular jabs haven't made any difference. There's the absolute fatigue, memory, clumsiness, urinary probs, small joint swelling and pain/stiffness, gastro probs, hair loss, poor healing, pulsatile tinnitus that drives me crazy at night, low bp, chronic chest probs, palpitations making me dizzy, spider veins appearing everywhere on a daily basis, chillblains/probable reynauds, it's endless, and the only test that has shown anything was an inflammatory marker (esr) was high, once...whenever I have a "flare" I see the go, who orders bloods, but the appointment is always weeks after and things have improved.

The one thing about yesterday that sticks in my mind is he asked about the rash, I told him after 10 days I saw the gp as it wasn't clearing with Otc cream, she gave me tablets and it began to improve slowly. But he said "lupus rashes don't come and go in 10 days!" I never said it had, but he just said "it's of no consequence, it isn't lupus" but then never actually told me what the rash could have been. Since that first episode I've basically covered myself all summer, except for once and within 30 mins it was starting and bam, another flare started too!!

All this on top of degenerative disc disease. Back pain for years, no mri as was deemed non surgical, until the lovely gp overrode that and sent me for one. Two knackered discs with a third on the way...

Oh my goodness, what an essay, sorry...

Again, thanks for the ears (or eyes), this is a wonderful group

Penelope-Mary profile image
Penelope-Mary in reply to Hayleybabes1982

See you are not going mad and here, you are not alone. So many, probably most of us have been done your road Hayley. Take 💛 , persist in finding the right GP and hopefully a sensible rheumatologist. Have you asked Paul Howard the convenor of this forum, for a list of specialists in your area?

I live a million miles away, but if you are in the UK, I'm sure he will be able to assist you.

Good luck with the pain mx appt.....that cloud of misery being lifted will be a relief.




Hayleybabes1982 profile image
Hayleybabes1982 in reply to Penelope-Mary

Thanks, I feel better already just reading others stories and replies. I'm really looking forward to the pain management appointment, hopefully help me with a more sensible pain relief regime... Last thing I need is to get hooked on pain meds too!! How would I speak to the Paul to ask for the list you mentioned?

Just started with another uti, so I'm waiting for the other flare symptoms as that's the way it seems to happen, stressed out as I have a house inspection tomorrow and the place badly needs decorating but I haven't the energy and hubby works so much in worried they're going to have a go... So stress seems to be a trigger...

Again, many thanks 💜

Penelope-Mary profile image

Stress is the worst isn't it? So hard to reduce when there is stuff to do! But what you can't control, be it the house prep....then try and ignore.

Simple question but I actually don't know the answer 😌...everyone else here does! You can 'private message' people which would include Paul Howard the administrator. I guess click 'help' from the home page and see.

Sorry about that....😊😊.

Pain mx is the key to mx this disease...its debilitating to have to push through it constantly. For me, it's the worst part and I do take small amounts of narcotics. I don't fear addiction, it's not possible when your body needs it, your mind doesn't feel the effects other than pain relief. Granted yes over time, the dose has to be adjusted but only minimally if combined with other measures.

Hope your flare is a minor, brief one 😳.




Hayleybabes1982 profile image

So my rheumy appt is next Wednesday and I'm getting really nervous. I'm scared that I'm going to be fobbed off due to my negative bloodwork. I struggle to stick up for myself and I need to express to them how poorly I feel...any advice? saw pain management last week, I'm due to have spinal injections for the degenerative discs so at least that's getting somewhere...

Hayleybabes1982 profile image

So, had my rheumy appointment on Wednesday, not sure what the score is still. He said negative bloods rules out lupus and anything rheumatic but I defo have soft tissue tenderness, joint discomfort etc, but then said it may well be spondyloarthropathy, which I believe Is a rheumatic condition... he said the antigen test I'd had previously was negative but that isn't necessarily a problem when diagnosed with spondyloarthropathy... he's going to have a case meeting about me, and even though I was a rubbish advocate for myself verbally, I did take a long list (lol) and gave it to him to look over...he's running more bloods. Gp is cross though as my urine sample was full of nitrites and the next day I only just avoided an admission to hospital with an acute UTI. He could have prescribed me something to treat it earlier... still, at least the guy believes there's something, even if it's not what I believed it was. Funnily enough, an Mri I Had done on my back at 18 showed some possible signs of ankylosing spondylitis but was left...

Thanks for reading, like to get it off my chest here instead of my hubby, he deals with enough...

in reply to Hayleybabes1982

Hi I'm in a similar place to you right now ,it's not fun is it . My first rheumy was sure I have lupus ,I've had chostocondritis , pericarditis , kidney problems , skin rash , lots of sudden crazy infections , swollen glands ,aching joints , TMJ ,raised heart rate omg the list goes on ,not to mention mouth sores ugh !

My GP left and new doc changed my rheumy 😕 next rheumy said blood tests all negative ,but I was healthy when I was seen . Omg in between appointments I had neuralgia and a whole heap of weird neurological stuff caused by an infection. GP was useless just gave me tegretol , both GP and emergency rheumy were hopeless ! Feel like I'm in a black hole . My employers are getting really annoyed at me for being off sick so much even tho I have been diagnosed with an enlarged thymus and I cannot pin the docs down for a diagnosis . Just seen another rheumy who says its seronegative lupus omg ,lupus really is elusive like a wolf .

I hope you get sorted soon , I'm disgusted at the nhs and even more so recently as I live on the border of two rural counties and when taken ill recently I was at work in the neighbouring county to where I live and the out of hours doctors wouldn't see me ,they expected me to travel 50 miles to my home doctors omg . Utterly disgusted . I felt so sick just went home and got the doc to come see me next day horrid experience . Kidney not good . They wonder why people turn up in AnE ! If I had the money to go private I would !

Hayleybabes1982 profile image
Hayleybabes1982 in reply to

God I know, private if I could too!! he told me although my symptoms were lupus like my bloods didn't back that up, but I've heard of sero negative lupus etc. my sis in law has newly diagnosed lupus with symptoms for years but only this year did she have a positive ana... my worry is that after the case meeting he decides to discharge me and then where does that leave me x

Guinea21 profile image

Hi. I too recently was dismissed within 5 minutes by a rheumatologist. i have lots of wierd things, last coupke of week my hands and feet are really stiff and achy. neck ache. then last Tuesday i woke in the night with painful glands in one side of my throat/neck. My neck glands are almost permanently swollen, but not usually painful. theyve been sore for almost a week now felt really bad when i got upnthis morning too. my bloods wee negative ANA but positive anti DS DNA. i sympathise with you. i think there are some rheumatologists out there who dont understand the disease really. i would go back to your gp and ask for a second opinion.

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