hello, I’m writing on behalf of my daughter 19. She has had aching joints for many years, with inflammation on knees. Her auntie has lupus. Over recent years has a lot of other symptoms, rosea rash, dry skin patches over body & scalp. Butterfly rash on face, eyes sensitive to light, loads of ulcers, huge nearly every week, stiffness in joints, pins & needles for no reason, extreme tiredness, brain fog, wakes up as if she has a hangover but without drinking, think someone else explained it as waking up as if they are coming out of anaesthetic, knee cramps. We have been back & forth to rheumatologist, she has had ana & another lupus test but negative, they have now diagnosed her with fibromyalgia, I’m not convinced! But we have a diagnosis of something. Even though her bloods are negative with the lupus tests could she still have lupus?
diagnosed with fibromyalgia but not convinced - LUPUS UK
diagnosed with fibromyalgia but not convinced
so sorry to hear your young daughter is struggling and awful for you to see . I will try to offer some positive advice but many of us will tell you on here the journey to diagnosis is very long and often frustrating .
The best advice I could give you (based on what I know now ) is :
Take pictures of anything that isn’t normal for her , rashes , lumps , bumps etc
Keep a diary of dates and symptoms .. sometimes things go on so long you forget when they started
Keep a note of any food / drink that makes symptoms worse .
Keep copies of all blood tests so you can compare and see what is “normal “ range for her
Pay for a private referral if you can possibly afford it but bear in mind it can take a long time for bloods to show anything (the bloods may change to show she has lupus or another AI disease ) . Ideally you need a good Dr who looks at symptoms as well as bloods . The NHS wait for rheumatologist where I live was 2 years from initial urgent referral 😳.
Really hope this has been of some help and I really do wish you and your daughter all the best in getting help .
Take care xxx
Ps I get the impression fibro is banded about when they don’t know what’s wrong
thank you, this is what I thought. We were thinking private anyway as we weren’t getting anywhere, rheumatologist only offering physio! We do record & take photos. Thank you for your reply x
forgot to say I’m not dismissing fibro as being irrelevant as I can only imagine how awfully distressing that diagnosis is for anyone xx
I understand I didn’t think you were. x
I'm really sorry she is going through this and I hope she gets the right diagnosis.
Would you mind me asking which health authority you are in?
All the best xx
Bristol
& thank you ☺️
Thank you Claudette. I only ask because my new consultant seems to diagnose Lupus patients as having Fibro instead, but he's not at Bristol. All the best and keep hassling them xx
I have all the same symptoms as your daughter; my diagnosis via Rheumatologist, (from blood tests & history/symptoms), is SLE Lupus. Maybe also see a Dermatologist, I have an appointment in October as my scalp is especially troublesome along with various skin lesions.
Dentist is the best one to see regarding mouth ulcers as they are the experts in oral issues & can refer to various other areas of medicine if needed.
Hope she has some better days & you can get a more thorough & helpful medical assessment as she is so young to be dealing with all that. Lupus is an absolutely awful, frustrating, depressing & challenging illness but there is a lot of useful information & support on here.
Good luck …..
thank you. If it wasn’t for an aunt having lupus I most probably would have had no idea about it, but as she’s got older it has got worse. I’m 51 & I have more energy than her, sometimes she is like an old woman I literally have to help her out the car as she is so stiff with her joints, it’s just not normal but rheumatologist said as her bloods are normal it’s not lupus!
We are suppose to be going back in 2 months as she had put her on a tablet to help her sleep at night so she’s not so exhausted in the day but with a fibromyalgia Diagnosis I’m not convinced this is what it is.
Thanks for the information 😊
Hi Claudette 1,
I was shocked when told I had Lupus & am still struggling to get my head around it! I absolutely don’t want it, it’s a death sentence to me as I’m a ‘doer’ - always been sporty/exercised & physically active. Rarely sit down during daytime, gardening, cleaning, DIY, housework, dog-walking but sunlight is excruciating on my head & can’t go outdoors without a hat & spf50 on.
I had lots of symptoms for years, even diagnosed with ME in my early 20s but always worked full time until retirement, then did voluntary work. Sought medical help last year due to worsening malar rash, skin & scalp problems.
One GP I’ve recently seen (for a different illness), on telling her I had Lupus said, “You have what?”…..unbelievable!
I do physio everyday for various body parts & I suggest your daughter sees a physiotherapist as they are generally supportive, understanding, knowledgeable & helpful. I also watch my weight & eat a healthy, varied & nutritious diet.
I cycle, swim, go to the gym (do moderate exercise on machines when my energy levels are up) & use hydrotherapy pool all to keep some level of ‘normalness’ in my life….I’m no athlete by any means but I need to keep moving…..I really have to push myself at times though & it depresses me a lot.
I get a lot of joint pain relief from Fenbid Forte Gel (prescribed by GP). My husband has Rheumatoid Arthritis & he swears by it, he also wears joint supports on his knees, ankles & wrists when he’s at work., now part-time. They’re a make called ‘Dr Arthritis’ & I highly recommend them. He’s suffered terribly over the last few years, had lots of different meds but more recently after having Rituximamb IV infusions, he’s starting to improve.
My last bloods were inconclusive but original ones confirmed Lupus.
Fatigue is the bane of my life & I reluctantly do have to succumb to it at times, so I totally empathise with your daughter (& you). I take Metatone Tonic (or Floradix) at particularly weary times.
Good, restful sleep is medicine in itself, (says I who sleeps poorly!) so I hope the meds help your daughter. She has her whole life ahead of her so I would keep being persistent with all Drs (as tiring & stressful as that is for you all).
I was prescribed Hydroxychloroquine but it aggravated all my symptoms & I felt far worse taking it than without it! Unfortunately, I also had a life-threatening Anaphylactic reaction to Depomedrone steroid injection whilst in the consulting room at Rheumatology Hospital which resulted in 999 ambulance to A &E. (As a retired Paramedic, I know how close to death I was).
I’m currently awaiting Rheum appointment for advice on Lupus meds, so just taking pain relief & anti anxiety/sleeping tabs (Buspirone & Diazepam).
Maybe they’ll suggest a Biological Therapy (hubby had Adalimumab subcutaneous injections which he did himself but they didn’t help much).
It’s an unpleasant journey you’re on with your daughter & I wish you brighter & happier days ahead as, to my knowledge, there is no specific treatment for Fibromyalgia.
All the best 🌸
oh my goodness you really are an active one despite all your health set backs.
It’s all really helpful information & advice. This has so far been a 3 year journey, but my daughter is pleased she has finally got a diagnosis even though I don’t think it’s the right one!
Sending you best wishes x
There’s good info here.
Have a read!
Perhaps the rheumatologist also needs to?
Child with SLE 
Male with lupus? Treatment advice
Living with someone with Lupus
Negative ANA - but lots of lupus symptoms and rash?
