hello.. I was diagnosed with fibromyalgia, rosacea, carpel tunnel, and reactive arthritis in 2019, after months of overall pain, inflammation, exhaustion to the bone, sausage fingers , pins and needles etc etc. Blood tests came back with inflammation markers, Epson Barr antibodies and a high rheumatoid factor. Although the rheumatoid factor was 25 and normal is anything 14 or lower, my rheumatologist said it’s not high enough to say I have rheumatoid arthritis. X-rays or ultrasound did show nodules but could just be at the beginning stage so they’re monitoring it all. Well the past year I had to have surgery in my mouth for gum issues as well as my eyes for inflammation so bad I was told if I waited 24hrs I would’ve lost my sight. My blood work last week shows no inflammation and only the high rheumatoid factor, even though all my symptoms are flaring. The rheumatologist said he doesn’t think it’s autoimmune. Here’s a photo of the rash on my face and neck. It has such pins and needles (way stronger then mild nuisance) and the top of my head has been burning and so itchy. Nothing has changed (no allergens). Anyone think it’s possible I have lupus even though ANA is negative, or anything else come to mind that maybe you have or have heard of or seen before? I’m struggling and just need answers so I can get on the right treatment path. Thank you in advance.
rash on my face and neck: hello.. I was... - Fibromyalgia Acti...
rash on my face and neck
go and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications
Noone on this forum is medically qualified to give advice or suggestions on your diagnosis, and even if someone has similar symptoms or could be due to a different cause
thanks so much for the welcome and reply.. I understand that any feedback would be purely informative from what they have experienced and that I’d need medical staff/tests to tell me definite info. I’m part of another group and we give our thoughts and in all honesty, it was because of that group that I approached one of my doctors to request certain tests that proved valuable to a diagnosis (for something different). So I’m just looking for general thoughts🤗
that's OK, just that sometimes we have people ask questions thinking there will be someone medically qualified
Hope you can get some answers sooner rather than later x
thanks again.. me too.. hopefully soon as I’m ready to pull my hair out from the burning on my scalp!😭
Hi Julieeee
I hope your medical team help you find a solution. As you have found it can take years. My identical twin and I still have different answers from our teams despite having identical symptoms.
I have found it useful to me my own detective about what helps day to day. Lots of tips for self care on here. Dealing with the frustration of not knowing helps.
I am sorry I cannot provide the medical details you are looking for. But replied to let you know you are not alone.
I hope all becomes clear for you soon.
Take care
Gigi
thanks so much for your reply. Knowing I’m not alone is so comforting and I appreciate your response!
My friend has lupus despite it not showing in her bloodwork, her aunt and mother have it too, it only shows in her aunts. She has Sciorotic Arthritis and ALS amongst many other conditions. She has Sjogrens disease which effects her eyes and mouth but not in the way you have been affected, it takes the fluid out of them. Took a long time to get diagnosed despite family history.
thank you so much for your reply.. I m guessing mine is a waiting game, my family doctor pretty much told me it’s a wait and see what it all turns into. One doctor did tell me I also have Sjögren’s but my rheumatologist isn’t sure. In my brain fog I didn’t explain properly.. my eyes were so dry that it caused the inflammation because nothing was draining in and out so when they drilled the holes to relieve the pressure, so much guck came out. I just want to have a name for it and get the proper treatment. I’m not sure how we can live like this for years and years before they figure it out?! Why is it so difficult!
Ahh so could be Sjogrens, I was tested for it too, they said no.
Both my friend and I have a huge collection of illnesses between us. I have all the CNS ones and she has all the inflammatory ones.
Every 5 years or so I develope another untreatable chronic pain condition, as does my friend. Everytime you think "right thats it I can't take anymore" as your life shrinks that bit more, again. But then with time it turns out you're still here and you haven't jumped off a cliff. Lack of choice gives you few options but to live on and wake up another day in what becomes your new normal. Its awlful but its all we have sometimes.
Sjogren's does seem like a good fit and as Cat00 says, not always an easy one to get diagnosed. The Sjogren's forum on Smart Patients is a good place to start, with resident patient/doctor Sarah Schafer, who started her own website to help others get diagnosis/treatment (sjogrensadvocate.com). I don't know much about Lupus, but many links to Sjogren's, so those folks will. Small fibre neuropathy is commonly caused by Sjogren's, but can have other causes (I have the small fibre, causes not yet certain - likely gluten and B12/folate deficiency as two of mine, both also far less easy to diagnose than you might suppose). Sjogren's is body wide and affects far more than glands/dryness (sicca) alone. I know you say no allergens and nothing has changed, but you are changing and unfortunately some of us become more reactive - to foods, meds, chemicals - I started to react to creams and soaps, basics that I'd used for years, and had to switch to minimal number of the cleanest products I can find. Can be affected by the autoimmunity, by oestrogen(s), viruses.... Best wishes
hi Julieeee,
I started with the same thing and was told it was eczema, used hydrocortisone cream and it disappeared overnight!
Give it a try, hopefully it works for you too x
thank you! I’ll buy some today and hope that it helps!! It’s been daily so I’m open to try anything 🤗
let me know how you get on, works wonders for me xx
I've been with this site for many, many years and it is the best. Im 75 years old and have had this illness in its full blown capacity for 15 years. Meaning, for me, Fibro came in 3 distinct stages. For years, early on, I remember as a young boy telling my father I hurt all over. His response was typical for the day. Its part of growing up and besides, men don't complain. So I didn't. Stage 2, was pain which caused me to limp, have to deal with incredible fatigue, and more pain. Last 15 years it's been 24/7 level 7-8 on the pain scale. And when the doctors started to stick, and probe, and check for Lupus and severe arthritis, and on and on, seemingly scared to death to utter the word Fibromyalgia. Why, because it means their bag of tricks had fewer and fewer ideas as to how to approach this problem, which by the way, IS REAL. So much so close to 75% of the doctors I've been referred to canceled my appointment when they learned it wasn't arthritis, but Fibro. Of the few doctors that didnt learn what my initial intake was for until after I was sitting in front of him/her and I was able to ask a few questions before they pushed me out the door I learned the rash, redness, and pins and needles on my face were caused primarily by Tramodol and a couple of other meds. We are sooooooo susceptible to heat, cold, wind, rain, noise, well, heck, virtually everything there are too many too list. Like a fellow sufferer explained when people asked what ITS like. ITS like how you feel when you have the flu. Your body, skin, muscles everything hurts so badly even pulling the sheets over you at night hurts terribly. The difference is the darn Fibro never goes away. What does help sometimes more than meds are the people on this site. They'll come up with ideas we've never thought of. So welcome to the family. Everyone is here to help and learn.
thank you so much for your reply. I became unwell and was not able to reply before now but I greatly appreciated reading your message. It’s true.. the ideas I get sparks my memories of symptoms I didn’t before connect and it allows me to write them down to explain to my doctors. Sites like these are so valuable to me. Your words warmed my heart and I hope you have a fourth phase where the pain is even less then the first one.
Julieeee, I'll extend the same courtesy to you as many have to me; if you're having a real bad go of it and you need to PM/email me right away please feel free to do so. Most of us, of course, will never meet. But then again, isnt that what we're all doing? It doesnt take long to realize that this is possibly one of the most family feeling group you'll ever come across. They/we want the best for one another and thats obvious. You hoped I had a 4th phase where the pain is less than the first. If that happens and I know what caused the good news I'll be sharing it with everyone so possibly someone else can benefit. Best of luck.
hi I have many of the symptoms you have described and high CRP levels Lupus and RA ruled out by Rheumatologist. I have seen a Audio Vascular Consultant due to Tinnitus and he is considering Mast Cell Activation Syndrome, from researching this it does seem like a possibility for me good luck with everything x
thank you so much for your reply.. there have been times my CRP has been elevated but this time round it’s normal.. I also have horrible tinnitus. I’ve had it for many years and it’s been very loud for a few. Could there be a connection? And Mast Cell Activation has crossed my path in researching but no one has tested for it. I have my next appointment on Monday and I’ll ask about ot for sure now. Thank you very much for your response!
your Welcome take care xx
Am so sorry your suffering, can only mention my findings from my situation, it may help or not.
I use tea tree shampoo with the head itching.
am also on cetirizine hydrochloride for eczema
am also gluten free for fibro related issues and dairy free for eczema,
while may think not allergen my fibro reacts to all sorts even emotions and thrives on stress and worry.
may need to keep a food diary for a month and write down any symptoms
try changing to different products whether washing, cleaning,
it is worth having an allergy pick test, they draw circles put small amounts of allergens on arm and gently scrap across, then wait a certain time to see any reaction. some results were surprising to me.
Unfortunately sometimes its a try and move on situation, sometimes stumble on the issue cause. it can take years.
need a celiac test before going gluten free if decide that route
gluten free takes up to 3 months to see any benefit, that's is strict checking of all sneaky ingredients in products. even tea has flavourings that could be barley malt. it should be mentioned never is.
with my eczema which seemed to always be inflamed from early school age, found when went camping my eczema recovered some, changed from cows milk at home to uht milk when camping. was drinking uht milk for years, also was dealing with another skin issue on back that caused me discomfort, when the supermarkets ran out of uht milk during covid, switched to Almond milk instead, that back discomfort issue has gone unless accidently eat a product with cows milk in.
Tomatoes lets just say can feel certain areas more, since eaten more.
compression gloves may help your hands,
hope find your answers
gentle hugs
thank you for all of your input.. gluten does make some of my symptoms worse so I stay away from it as much as possible.. and I’m lactose intolerant so definitely stay away from as much dairy as possible. I’ll happily try all of your suggestions! Oh I’ve had 2 colonoscopies and they never show any issues.. alas!
that looks like lupus
you need to find a different dr. Where do you live
you can have lupus without post Ana .. or Rheumatoid Factor. What have your labs been? If you have had a n elevated RF . U have inflammation. Just bc its not high every day. ?? That Dr doesn't sound right to me. What has your CRP , ESR??
I useused to be a registered nurse. Where do you live? US? I just want to help. The rash looks classic lupus.
I would find an immunologist to do a work up. That or a hematologist.
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