Hello dear friends 🧡 Here I am again with the same old 🙈2 years on and still getting this rash. It causes very bad headaches,stomach ache,body stiffness worsens and sores in my nose,flu like symptoms too. I have had all the bloods checked ANA everything,is it just fibro ?
Thankyou
Hi there ,sorry too read these symptoms are still going on after all this time, it must be very wearing ☹️and you’ve tried too move forward having blood tests done, have you ever had skin tests done for any allergies , just came too mind ? I think they are fairly simple tests done on your skin, my sister did and showed up anything g she was allergic too including some type of foods, just a thought . xx
Yes I had those done and were also fine 🙂
Well your doing your very best too try and get too the bottom of this ,I hope you get some answers eventually x
Thankyou so much 💓
have you been tested for lupus as that does what they call a butterfly affect rash across the face? I have so many autoimmune conditions it’s one that. Has crossed my path 🥰
Hello, I have had all the related blood work and nothing at all showing just keep saying it's my fibro 🙈Thankyou for your reply
mountsinai.org/health-libra....
Hiya Deeb1764
Very interesting reading, I have read similar in an American paper online. I am under a Rheumatologist and I am going to suggest this to her, unless anything has come up in more recent blood tests. I can't even hide this rash or the burn like lesions with make up. I'd just like something to subdue it.
Thanks for the link! xx
It is possible to have seronegative lupus. There are people on the HU lupus site who have negative bloods but have been diagnosed with a connective tissue disease. This requires a physician who does not rely on blood tests alone but is prepared to be guided by a patient's symptoms.
So helpful thankyou for your time 🥰
What type of health professional would I need?
You would need GP to support you based on criteria and explanation re bloods not showing ana to be referred to a rheumatologist
Thank-you again for being so helpful ❤️
Usually a rheumatologist, or sometimes a dermatologist. If you have difficulty getting an NHS referral from your GP to see a rheumatologist (because some GPs are reluctant if you don't have positive bloods) then you could consider a private consultation. From what I've learned on the Health Unlocked lupus site many people do this to get an initial diagnosis, then continue treatment on the NHS so it doesn't work out too expensive. I believe initial consultations are about £250. If you check out the lupus forum site there is more info. The London Lupus Centre is recommended by many, but there are others. I do hope you get help soon as it is miserable living with so many unresolved symptoms. Incidentally it is not uncommon for people to be diagnosed initially with fibromyalgia which later turns out to be lupus.
I was just about to say the same I will find info as autoimmune and aero negative a minefield think I have a link 🥰
Amazing thankyou so much! ❤️
healthline.com/health/lupus...
It is rare BUT what if . So worth reading and then can ask the questions
been on a hard road of autoimmune so it can be a battle 🤪
My mother has fibromyalgia and she has the rash and the aches and pains and especially the nose sores.I was diagnosed with fibromyalgia two years ago and I am the same as you with the rash nose sores and aches and pains.
So I'm thinking yes definitely fibromyalgia
Or sero negative autoimmune disease, such as lupus or vasculitis.I was misdiagnosed with fibromyalgia for a long time before tested for complement levels and the anti-C1q antibody, both of which were out of the normal range.
All my ANA,ANCA,ESR &CRP markers were, and still are within normal range and hence the initial diagnosis of fibromyalgia. But I actually have a rare form of vasculitis whose symptoms are pretty much the same as lupus. I'm now being treated for it
Always worth challenging a diagnosis of fibromyalgia (which some drs are too quick to resort to as a diagnosis) and seeking out a rheumatologist with a practical approach as up to 20% of patients with autoimmune conditions don't make the usual antibodies that are typically tested for.
Good luck all 🍀
Hi have they mentioned lupus to you my daughter has same symptoms and buttefly rash on face took them 2 years to dignose . I would ask your doctor .hope you get it sorted xx
in my experience that sounds like lupus, have you ever been tested for it? I have lupus and I had all the symptoms your saying, just recently been diagnosed with fibromyalgia off my lupus specialist aswell, hope you get the right diagnosis, it took them along time to diagnose lupus and I’d had blood tests previously so just wondering if the right blood test has been done, I would ask them to test for lupus to out rule it personally x
my daughter has your symptoms exactly…. The rash is mirror image ,being treated for Lupus..
Hello,oh really?has she tested positive with boods as my were negative last year and Ana still negative.
is it just on your face? How long does it last?
Yes just face,last around a week.
I ask because I get a similar thing when I’m not well but I also get it on the hot parts f my body ie the crook of my elbow and under my bust with paracetamol it goes when my temperature drops it’s a bit like my thermostat is faulty
Has your Dr ruled out Rosacea?
I had exactly the same red rash, in the same places as you, my eyes were watering badly at the same time, GP saw photos as it was in 2020 and Lockdown, he diagnosed Rosacea, I had all the bloods to rule out Lupus etc.
Mine seemed to be around the time the peri menopause was kicking off big time, don’t know if it was all related though🤷🏼♀️ I asked the question but just got shrugged shoulders from the male GP🙈
I was given various creams and antibiotics, to help settle it. But I still suffer with it now.
Hello,thankyou for your reply. I'm not sure rosacea would make me feel poorly like this does but no he said not rosacea
rash then pain like stinging nettles 
What’s my rash? Answers on a postcard ;-)
Modafinil rash is this a cuase of concern?
Rash - spots - blemishes - anyone else got them? Feeling like a dalmation here!
Fibromyalgia I'm Giving Up
