Hi all, just hoping for a bit of advice if possible. I’m 40 years old, been suffering for almost 3 years, with what my GP/ neurologist diagnosed as post herpatic neuralgia, experience joint pain, throbbing, pain in my hand/ arm and neck. I first had shingles 5 years ago, then another (what they thought was) facial shingles 18mths ago. The rash has never gone, and appears to be getting worse, now across both sides of my face, symmetrical, But not in a butterfly shape. After waiting 6mths to see a dermatologist, he completed some ANA blood screening, and my GP has given me some minimal information and told me to go home and google lupus! I’m due to see the dermatologist again next week who is looking to refer me to a rheumatologist. Has anyone else been misdiagnosed with post herpatic neuralgia? I’m really unsure what is wrong with me. Can anyone advise me how lupus is officially diagnosed? I would also really appreciate any advice on what can be used to treat the rash, it’s becoming unbearable Thank you
Advice greatly appreciated. What’s wrong with me?... - LUPUS UK
Advice greatly appreciated. What’s wrong with me??!!!
Hi there. I have Sjögren’s rather than Lupus but I’ve often been asked about post hepatic neuralgia because I have neuropathy and neuralgia all around the areas you mention plus rashes. In fact I actually have the same neuropathy everywhere.
I was originally misdiagnosed with Rheumatoid Arthritis (another one of same autoimmune pack) 8 years ago but rediagnosed 5 years later with Sjögren’s by positive ANA and lip biopsy plus compelling symptoms ie dry eyes, RA like joint swelling etc.
To get diagnosed with Lupus the rheumatologist would probably look at your bloods to see if you have positive ANA and, more specifically to Lupus, anti dsDNA - antibodies strongly suggestive of Lupus. Also they will look for high levels of inflammation in your blood.
In your face it could be Trigeminal Neuralgia and/or Occipital Neuragia - both of which can be found in Sjögren’s or Lupus (2 sister autoimmune diseases).
Best of luck to you and I hope they can get the horrible neuralgia (a form of small fibre neuropathy in my case) under control.
Twitchy
Thank you for your helpful reply. I’m getting really frustrated now, especially with the rash, which I currently have no treatment for. It’s really sore and at times I don’t want to leave house. With 3 kids and a full time job, it’s proving really difficult!
Having just had a horrible spell of nasty treatment for a carcinoma thing on my lower lip - I can really understand how self conscious anything on face can make us feel. But remember there are lots of skin conditions and other things that can more commonly affect the face than Lupus eg adult acne, Rosacea, eczema/ allergic dermatitis, common skin cancer treatments, impetigo, shingles, scars, burns, psoriasis, hives etc so I’m sure no one will think too much of yours apart from feeling sympathy.
It always feels worse to us than it looks to others. Hopefully you will get a diagnosis and treatment soon. 😊
Thank you x
Poor Louise - how awful to be told to Google it! Dreadful behaviour. Unfortunately this is how many immune disease sufferers are treated by GPs. My Lupus and Sjogren’s was brought to light due to recurring Shingles. First, please make sure the Rheumatologust you see has an interest in Lupus - I am sure the Admin people here can help tell you names in your area. My first rheumy told me I didn’t have it and my friend went to him and was told no, she has now been diagnosed by another Rheumatologist as having Fibromyalgia.
I take Aciclovir 200mg daily which keeps my shingles at bay. For speedy help, ask your local independent chemist for help with your rash. Mine is so good - he gave me Flexitol hand cream because it has Urea in it. It not only helped my cheeks but my cracking fingers too. I find Aveena face cream helps too, nothing heavy.
There is so much help available but you will learn to look for it. Is there a Lupus centre near you? Google for that. Check your local hospitals and Consultants. Best of luck !
Thank you so much for the helpful information. I too have been put on a treatment plan of aciclovir, I’m 2mths into it, but it appears to have made no difference to my rash, and the blood tests my dermatologist has done seem to be indicating lupus, but that was all my GP said, aside from “google it” I’m due to see the dermatologist again next week, and In his letter to the GP he said he is going to refer me to rheumatology, I will get some of the cream you’ve mentioned, thank you, my pharmacist has simply said they cannot give me anything with a steroid in, and gave me diprobase, which hasn’t helped! Thank you for your help x
The “google it” thing is bizarre when you think how many of us are told by our doctors not to rely on Dr Google?! Is this what primary care has been reduced to now?!
She wrote a couple of websites down such as patient health, and NHS, but it was apparent I had a 5 minute allocated time and it wasn’t going to overrun! She also said she had never heard of oncall dermatology, who the dermatologist had requested were contacted when my face flared up, in order for them to get a biopsy. GP asked me to contact dermatology to find out what she’s supposed to do! I understand the pressures of the NHS, but this has been ongoing for 3 years now, and is having a really detrimental impact on my life. I’m suffering with anxiety quite badly ☹️
I know - it’s the same with invisible issues when we think we must be going mad and our GPs seem to have no concept of the anxiety and even depression these sensory symptoms and the waiting can cause.
I guess they must get compassion fatigue - but I try my hardest now to only get double appointments and only see GPs who are prepared to go the extra mile. Yours won’t see Lupus everyday and could so easily have referred you to Lupus UK for very reliable info and also, very importantly, this lovely HU community! X
I’m so glad I’ve found such a great site. Sadly, over the last 3 years I have just been given medication after medication. Amytriptline, gabapentin, pregablin, sleeping tablets. None of it has been effective.
But all of these are used for nerve pain in Lupus too - although you clearly need something else as well. X
It’s more the side effects, they do help with the pain, some have made my anxiety worse, I experienced panic attacks with gabapentin, some have made me unable to get out of bed! and really foggy headed which has been hard with work/ kids X
Yes Gabapentin made me so angry and see double too. It is so hard when you have kids.
When my 3 were young I was battling against Hashimoto’s, Sjögren’s and severe eczema and alopecia thinking it was all just me - unaware of the existence of any of these conditions! 🤷🏼♀️
☹️ That must of been so difficult for you. I hope your condition is managed more effectively for you now. And thanks once again for taking the time to reply to me. It helps to know it’s not just you x
You are so welcome. I think it was easier in a way as I had always struggled since childhood so I have known nothing else.
I have tried 5 imunnesuppressants but am unusually drug intolerant so had to dump each finally. I’ve always had allergies.
I’m now untreated except for an anticonvulsant for Trigeminal Neuragia and lots of topical treatments for dry eyes etc. Been really unwell for about six months with mix of neuro and gastro issues.
I think my doctors are all too wary to treat me now lol! I’m still trying to figure things out for myself with help from people here and on the international Sjögren’s FB support group page. Fatigue is ongoing too so I’ve learnt the hard way to pace, eat as healthily as possible, not drink alcohol, not consume refined crap or sugars etc. I am under rheumatology (connective tissue disease clinic) and neurology and others - too many to bore you with!! Xx
I’m so sorry you’re suffering! I’m curious if your doctors have every done a biopsy on one of the bumps?
To see if it’s HSV1 or Hsv2, or inflammatory? Asking because that is what I had to do for myself.
Consider asking/suggesting to your doctor..
I’ve gone through a lot of things myself (see my profile) I know it’s not lupus for me but what I have learned through all of this is documentation and take pictures of everything and any changes!
My neurologist has always told me to that we can make the pain tolerable but it will not go away unless you what’s causing your systemic problems.
I fell onto this section of the site as I’m now taking a medication that’s used for both diseases and everyone is SO SWEET AND KIND!!! I am so GRATEFUL to all of them Sharing there experiences with me!!
Good Luck!!
What’s given me strength is my Faith and this has been my Mantra, I hold onto Hope and pray that this too shall pass.
H old
O n
P aim
E nds
Hi, the dermatologist has requested my GP calls on call dermatology when my rash flares in order to biopsy it, but unfortunately the GP said she’s not sure how to do this! It’s a nightmare trying to get through to the surgery, so as yet, it’s not been done. Will discuss this again at dermatology next week.
My blood screening reads
ANA, FBC, VZG, lgG/HIV all satisfactory. Anti La positive (2.9) we will refer to rheumatology when next seen.
Does that mean anything to anyone!
Thanks x
Anti La can point to Lupus or Sjögren’s. Most associated with Sjögren’s though.
Could this still be the case if I don’t experience dry eyes/mouth? I’ve never had this x
Really these antibodies aren’t that disease specific to be honest. If you get diagnosed with Lupus or other CTDs it makes it more likely that Sjögren’s develops. Or you may have the neuro and skin manifestations without the dryness (sicca) yet. Like Lupus Sjögren’s is a systemic autoimmune disease and it presents differently for everyone.
Rheumatologists tend to know more about Lupus than Sjögren’s - in fact there’s only a handful of Sjögren’s experts in the UK. I definitely know more about it than my doctors do although they wouldn’t concede this of course! Well my GPs do but not the consultants. My first rheum never even mentioned it or Raynauds when I used to ask about symptoms of these at every appointment!
I am now under a professor of dermatology who is wonderful but didn’t know that Sjögren’s affects the nerves?! But at least she was interested and happy to learn. She thinks I also have an overlapping connective tissue disease.
It is so complex isn’t it 😫 x
Hell yes it really is!! It’s been like doing an open university degree for me and I didn’t even take biology o’level! But many of us here learn through lived experience and can share tips and our acquired personal expertise along the way.
Bear in mind though that we can’t give medical advice here - just as most doctors can’t offer advice from their own personal experiences of Lupus or Sjögren’s!
But we can hold your hand through cyberspace when you have your appointments and tests or are just having a bad day. X
It’s really reassuring to have other people experience the same issues. I felt so deflated after my last visit to the GP, not to mention anxious! I think educating yourself is the best option! x
I agree. Also you soon learn where the most reliable research info comes from but you won’t go wrong with Lupus UK and the British Sjögren’s Syndrome Association. X
Hi Louisew78,
I am sorry to hear you are experiencing a flare at the moment. Around 60%-70% of people with lupus experience some sort of skin involvement. Although a 'butterfly/malar rash' is common in people with lupus the rash can appear anywhere on the body. We published a booklet on lupus and the skin which you may find helpful to read at lupusuk.org.uk/wp-content/u... - it is important to remember that lupus presents differently in everybody, therefore, no two people will share the exact same experience.
We offer a free information pack which you can download or request at lupusuk.org.uk/request-info.... You may find it helpful in showing this pack to your GP to help explain your symptoms and asking to be tested for lupus.
To find out what criteria and tests are needed in order to make a diagnosis of lupus, read our blog article at lupusuk.org.uk/getting-diag...
If you would like to read our blog article on pain management, visit lupusuk.org.uk/pain-managem...
Please keep us updated, wishing you all the best.
Thank you so much for this- really helpful x
My face is really bad today and I’ve managed to get an appointment with the on call dermatologist tomorrow for a biopsy, finger crossed this is a step forward to finding out what is going on for me. Thank you again for all the helpful replies.
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