ANA, DSDNA. Results?: ANA positive... - Fibromyalgia Acti...

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ANA, DSDNA. Results?

JLK1990 profile image

ANA positive, DSDNA 11.8.

ANA went negative at my following Rheumatology appointment.

Had another appointment on the 19th July, received a letter before this appointment stating bloods will be redone. However this wasn’t the case.

Received diagnosis of Fibromyalgia on the 19th July.

I’m confused!! 🤷‍♀️

Anyone else get a face rash, cheeks and nose?

Many thanks 😊

Take care everyone x

22 Replies
desquinn profile image
desquinnAdministrator

ANA being negative is fairly normal but not sure about the previous positive result. ANA can be a bit unpredictable I believe. DSDNA below 30 is negative so considered normal.

the rashes would not be part of the diag criteria for fibro normally.

JLK1990 profile image
JLK1990 in reply to desquinn

Thanks for the information.I was being checked for Lupus. On top of my Fibro diagnosis.

I have a persistent sore throat and lots of mouth ulcers.

And swollen lymph nodes.

I can definitely relate to the Fibro side of things too though.

My hands and feet are the worst, horrendous pain unfortunately.

I probably should have mentioned the letter stating bloods to be redone.

But I’m very forgetful and my brain is scrambled!

desquinn profile image
desquinnAdministrator in reply to JLK1990

with the rash the lupus route will be considered hence the blood tests. But it like fibro is a journey both in diagnosis and treatment. Check out lupusUK as they are excellent.

I have been back and forth to multiple consultants and there are pretty sure I have fibromyalgia. My first ANA test was negative and due to get the results of the second round of full rheumatology bloods on Wednesday but I assume as its been 3 weeks since I had them taken they will all be normal. My symptoms are endless and overlap multiple conditions. I have a very red blotchy face over my cheeks and nose but have now also developed hyperpigmentation on my face too. My GP has offered to refer me to a skin specialist and said that the redness could be due to rosacea which is apparently very common in people with fibro. There is a cream for rosacea that you can buy so I might try that before all these medical appointments take over my life.

JLK1990 profile image
JLK1990 in reply to Bikergal900

Hi,

I’ve had three appointments with the Rheumatologist now, and I’m now back under the care of my gp for the time being. I’m still on the Rheumatology list just in case anything changes, my gp can get in contact with them.

I didn’t hear anything regarding my bloods until i saw the rheumatologist again, i had 6 week waits in between all three of my appointments.

Hopefully you will hear back soon.

My hands and feet are the worst for me.

I do have some joint space narrowing and fluid showing on X-rays and ultrasound.

I’m being seen by pain clinic next, probs be a long wait though unfortunately.

Hope you are ok

Take care x

Sarahvit profile image
Sarahvit in reply to Bikergal900

Yes I had rosacea too for years up to when I stopped wearing makeup in my 50’s and it cleared up. I didn’t think at the time it was fibro related.

Yes I had facial rashes and family history of lupus and a positive ANA and they diagnosed fibro. They put the rashes down to rosacea, then it was shingles when the rash changed shape to one side of face only.

JLK1990 profile image
JLK1990 in reply to Dinkie

Hi,

Do you still have the face rash?Mines even worse now the weather is sunnier and its been particularly hot recently.

Dinkie profile image
Dinkie in reply to JLK1990

yes mine is always worse in hot weather, it's quite painful too. Make sure you use a good sunscreen, in fact the dermatologist prescribed some very high factor one for me as a one off prescription.

Hi Desquinn,Yes I have the rash , which I thought was a Malar rash from lupus, however my blood results came back very similar to yours? I was diagnosed with fibromyalgia in January, symptoms are almost identical to lupus apparently? Be interesting to hear if anyone else has the same.

My friend had similar test results but was still considered to have lupus b<t it took longer to diagnose. But she does have arthritis and a mother and aunt with lupus.

Yes, I too have redness on my face and across the nose. In addition, I have one eyelid that is red and swollen. I have seen a dermatologist, had bloods and a biopsy taken on my face-they showed nothing sinister. I was prescribed antibiotics which did nothing, then I had a weeks course of steroids which did take it down, however, it returned as soon as the steroids wore off. I have no been prescribed 3 months of antibiotics. I am over halfway through them and they have still made no difference. Sometimes my right eye and right side of my face swell up and I look like the elephant man. This is very upsetting as I have enough things to contend with-fibromyalgia, bile acid malabsorption, irritable bowel, diverticulosis and osteoarthritis. I am 57 but feel like I am 97 xxx

LisaSnow profile image
LisaSnowFMA UK Volunteer

Please wear the best mineral sunscreen you can find everyday. UV exposure triggers cellular inflammation and speeds up cell division that can lead to cancer (skin cancer). If rash is already present it makes your skin even more vulnerable to damages.

Hi. I used to have rosacea quite a few years ago and nowadays, I just get itchy red lumps on my face and neck which I think are over reactions to insect bites but when I spoke to rheumatology, she told me to take pictures and speak to the doctor about it as it could be something else. My rosacea disappeared as soon as I stopped eating wheat and dairy and thank goodness it hasn't been back since as it was very itchy and sore and was all over my neck and chest. It's also very stress related which is so annoying as the condition itself causes more stress! I also used to suffer with many ulcers to the point where I couldn't eat (or talk) and I was given this glue like stuff to put in my mouth by the doctor. It was all down to diet.....or lack of diet as I wasn't eating properly at the time. I'm now very sensible with food, I eat regularly, and now I don't get ulcers anymore either. I know diet isn't the answer to everything but I found it made a huge difference. I hope you get it all sorted soon. x

Please consider reposting this in the Lupus UK forum and get in touch with Lupus UK charity.

Blood results change and many lupus patients test positive some, but not necessarily all of the time. It is the clinical picture, the symptoms, which are equally as important to pay attention to.

Lots of experienced people on the Lupus site to help guide you, but you certainly do seem to have typical lupus indicators.

The trouble with fibromyalgia is that there's no test for it, it's a bit of a bucket diagnosis. Easy to miss an autoimmune condition that is, or has become sero negative. Please keep looking for answers as there may be a treatable underlying condition. Good luck!🍀

Sometimes it takes time for all the dots to be connected. I had an ANA 2,560. I was put on Plaquinil at that point, but then my ANA went negative. It was neg for three years. It’s now consistently positive, but I still don’t have a definite diagnosis. I’m convinced your organs have to fail before they will diagnose a person. I too have found diet plays a large role in how we feel.

JLK1990 profile image
JLK1990 in reply to jesusgurl

Thanks so much for your reply.I hope you are doing ok..

I have lost 5 1/2 stone since my symptoms started 2 years ago. Lack of appetite and generally feeling so unwell.

I’m not sure if this is a common thing with Fibro.

Take care

Hello, I’m not sure what the ANA and DSDNA are. It may just be because I’m feeling so bad today and fibro fog. But the face rash cheeks and nose is typically seen in people with lupus. I haven’t read what other people wrote which may answer my question of ANA (antinuclear antibodies) I just googled and was thinking nuclear antibodies just didn’t have the anti part there. That test show autoimmune disease like lupus. I would get a second opinion with a new rheumatologist. Sounds like you were given a diagnosis way to early. I have know people with fibromyalgia go into having lupus. They have a lot of the same symptoms outside of the butterfly 🦋 rash. Okay the DSDNA is also a test for lupus. Yes definitely get a second opinion. They haven’t ruled out other conditions before diagnosing you with fibromyalgia. Unfortunately some doctors see a bunch of symptoms and use the diagnosis of fibromyalgia as a catch all diagnosis. Back in 94 or 95 this one doctor out in Evanston Wyoming USA was diagnosing everyone of his patients with fibromyalgia and not catching what really was going on with his patients. Last I herd a family member of one of his senior patients had a lawsuit against that doctor. Please seek out another doctor for second diagnosis and treatment. 💕🦋🌹

I feel the same way, I had a rash over my nose and cheeks like you, especially in the sun. When I was younger I never experienced this.

I don't know about you but I was made to feel like I was going crazy. Which I would then start questioning myself are these things all in my head.

Its so frustrating when you are told its one thing then results say otherwise. One doctor doesn't question you then another does.

The results are slightly positive then negative but you still have symptoms.

Makes me want to give up and suffer in silence as they say.

I hope that you get some answers sooner rather than later.

Take care

Hi, first time replying to a post. I take it that the tests you had were for Lupus. I have had the red rash (butterfly rash) on my face for years but tested negative for lupus. I was diagnosed with fibromyalgia in 2012.

That's really interesting as after years and years of symptoms (the butterfly rash many years ago which was diagnosed by a dermatologist as lupus but the notes have been lost - talking 20+ years ago) and in the past few years fatigue, arthritis, headaches, oral ulcers and more recently a positive ANA test. However as I was diagnosed as having fibromyalgia by a rheumatologist four years ago, the doctors won't re-refer me. I have found fibromyalgia tends to muddy the waters and it's a convenient diagnosis for doctor to hang stuff on. More recent blood tests I've had have shown elevated inflammation markers but I've been told that's fibromyalgia.....So be warned I'm convinced as a previous poster has said that you have to have actual organs failing ala Lupus before they will diagnose you. I'm considering going private now and saving up.

desquinn profile image
desquinnAdministrator in reply to achydunlin

"had have shown elevated inflammation markers " - this is not fibromyalgia and should be followed up on. It may not be anything significant but it is not fibro. markers can be present for many things. Contact lupus UK and speak to them if you need help with challenging to get lupus ruled in or out.

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