I was diagnosed with Lupus SLE 5 years ago now with several positive ANA results over 2 years.
Yesterday I went to my appointment to see the Rheumatologist. I told him how poorly I'd been feeling - I've been flaring since Feb when the joint pain was so bad I could barely dress myself, then the fluey aches took over along with the all over tendon pain so I've spent a lot of time in bed over the last few months. This is now so bad in my foot now that it really hurts to walk.
He told me my ANA test was now negative, which would be good news if I wasn't feeling so poorly. I asked him 'but many people have a negative ANA and still have a diagnosis of Lupus don't they?' and he said something 'bla bla bla..' I couldn't focus on what he was saying. I left the hospital in tears because it felt like he was saying that my blood results didn't show Lupus. My ESR has risen again from 8 (this time last year) to 13 (in Dec) to 22 which I know isn't that high, but is still higher than 'normal'. It feels so frustrating when your blood tests don't explain why you feel so poorly. I feel just the same kind of pain as I did when the ANA was positive. Can anyone else relate to this? I feel really upset about it - like the rug is being pulled out from under me.
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Maya23
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HI Dryad.....boy can I relate... My ANA was positive 2 yrs ago before I started taking digestive enzymes and natto Kinase enzymes. My blood work showed negative in a year. So, thanks to enzymes I was cured, right? Well, same as you...I don't feel so good often. I have been staying off this sight because my drs say I don't have lupus. Even a hematologist said, no lupus. (I did test positive for prothrombin genetic mutation heterozygous... clotting genetic disorder...so my instincts were right about taking natto kinase enzyme before I could have had a stroke)....
Anyway, today I am exhausted, but I am attributing a lot of my problems now to sluggish lymphatic system which I have been told I have, and sluggish, slightly hypothyroid.( My sister still claims it is just aging as she is a pediatrician. And if she doesn't have an answer for why when I walk my hands blow up like balloons, she says I don't know).
I have terrible pain in my right hip joint and can hardly get up out of a seated position. I have a herniated L5 disc. And I have pain sitting altogether. Another problem. I have been going to a chiropractor for the past month or so and see some relief, but it immediately comes back the next day. My upper back tension between my shoulder blades is getting better with chiropractic care.
I get the occasional dry eyes and use natural eye drops to relieve, but have noticed my pupils are not what they should be as I see my daughters pupils get bigger in the dark, my seem to stay the same size. (Eye dr says my eyes are fine too)... I get occasional ear pain and take a natural anti inflammatory like turmeric or bromelain. I also supplement with minerals when I get cramps anywhere in my body, including my head.(Chiro said magnesium will relax muscles. I take one every night as my feet cramp at night)
I also get occasional nerve pain up my vegus nerve. It shoots right up the left side of my neck to the top of my head. (No way of proving that this is the result of the vegus nerve, but I remember you posting something about this. I found it very interesting since I was getting nerve pain in my head and read it could be this nerve) If so, why is it not working I wonder? Age, accident, genetics?
Cannot take too much bromelain as it effects my scarred kidneys ( No doctor has ever explained why I have that)... If I stop taking digestive enzyme, I bloat up like a balloon in the abdomen and cannot eat a lot. I have a hiatal hernia as well. My indigestion is better with the enzyme. My high cholesterol is attributed to thyroid, hence I am taking a thyroid support supplement.
Oh, and when I get my itchy scalp, the ginger shampoo helps, but sometimes I try to itch the itch, and I cant relieve it no matter if I itch my entire scalp. What is that about? The nerve endings are irritated, but scratching the area doesn't relieve it? I still cant figure that one out...
Bottom line....I seem to feel ok if I don't stress emotionally, don't too much, and I am not working. I seem to be doing better in the warmer weather. I feel doctors do not know what they are talking about. We all know we don't feel well which no one seems to have an explanation for. Why would we make it up???
When I feel bad, I make a super, crazy nutritious smoothie with a bunch of veggies and fruit.... I feel less ill.. ...Go figure......I try to stay away from doctors as much as possible. They only add to my stress. Good luck. I hope you can find some answers. So sorry that no one has an answer. Maybe someday.....Keep looking for answers...
Thanks Natura, you certainly know a lot about the weird place we're in. It's hard to not feel like a fraud when your bloods don't show your pain!! I am now wondering if autoimmune disease is like a spectrum and we can move up and down this spectrum? Before my ANA turned positive, my diagnosis was ME. My symptoms have certainly progressed since then, with more joint pain and nerve/tendon pain, but what are they progressing into?? Once I get one new symptom it seems to hang around or return with frequency. I wonder what will happen next?
I am keen to try the LDN (Low Dose Naltrexone) now - I know a couple of people with Lupus/fibro and MS who are taking it with great results. It reduces their symptoms, and increases energy and happiness levels. It works at very low doses - and I feel like I've gone as far as I can with natural remedies and diet. I spoke to my consultant about this and he said he couldn't endorse me using the drug but would be interested to know how I got on. He advised talking to my neurologist first.
I'm so exhausted today, I wish I had more energy to spend on fun and less time was taken up with hospital appointments and being ill!!
Dryad....I totally understand what you r saying. I feel diet and nutrition can only go so far as well. Especially since I am getting nerve pain here and there. Don't know what to do with that. Good luck with LDN, as I had a terrible day yesterday where I couldn't get up in the middle of the afternoon to cook my daughter lunch. Scared me. I just layer there until I had the energy to get up and pick up my other daughter from school. This morning I have energy and will try a bike ride. Take care. And please let us know how you feel with taking this.
Have they put you on high dose vitamin D? I had a semi low reading on my Vitamin D levels...The rhumetologist put me on high dose vitD...2000 IU a day..I must say it helped quite a bit...Ive since backed off on it a bit, because we never would have taken that much back in the good old days....I just backed off to 1600 for now...
I think lupus can still be active even if you have negative ANA sometimes...Especially if your ESR is elevated (Inflammation, right?) Something certainly is going on...Or maybe evolving...The way the disease goes...who knows? Try the vitamin D if you haven't already...its cheap, and it seems to help...
2 weeks ago I was in such pain with my joints I woke up screaming. It has been coming on for some time but I had hoped that it will go to sleep eventually. My regular blood tests were done just a few days before waking up in agony. The pain level was like nothing I've ever had so far so I immediately started with 30mg Prednisolone and made an appointment with the rheumatologist for two days after (I see him privately specifically for situations like these). 2 hours after taking the steroids the pain subsided massively.
By the time I saw the rheumatologist I was feeling like I used to before this disease hit me. The rheumatologist had the blood results in his hand - the ANA appeared as "mildly positive" which apparently meant 1:80/1:160. However - he did not hesitate to support the steroid course and an increase in the immunosuppressant. He recognises that in my case this level of pain is uncommon, regardless of what the blood tests say - his view is that his duty is to treat me, not the blood tests.
So there's no point your feeling like a fraud - just because blood tests, that have never been the right biomarker in the first place, aren't sufficiently sensitive to reflect what you're feeling, it doesn't mean that you're imagining the disease.
It is easy to get sucked into getting along a doctor's assessment while in the consultation but sometimes it is useful to keep some distance and at the end of the session to ask the doctor about how whatever he is telling you will improve your wellbeing, reminding him to focus on you, not archaic tests.
Use few days to re-group but I'd go back and badger relentlessly until you're listened to properly.
Hi. Can I ask, are you in USA? It is just that I don't think we in UK have stand-by Steroids, or am I wrong? I think the "norm" is start on a mid to high dose which is tapered off gently.
Are any of us Lupus persons in GB given steroids like that?
Sorry to hear of your bad days, guys, sorry to butt in. I am just interested in medications that are given to us.
I am in the UK and I assume the same as you, I was given high dose 30mg a day and tapered down over 2 years to nil, was surprised to read about taking them occasionally
Hi Dryad. I believe many autoimmune symptoms overlap. The medical "boxes" are purely arbitrary and the tests currently available have flaws. I am diagnosed bipolar but I have had many symptoms in common with lupus sufferers, which is why I take an interest in this site.
Going gluten free eradicated my symptoms of joint pain and back pain for a time. When the problems came back I had to look again at my diet. I found I was reacting to potatoes, even the small amount of potato starch in my gluten free bread and it was even in the gluten free stock cubes I was using.
After a week of only meat, fish and green vegetables my pains stopped.
Thanks for all your helpful comments. I spoke to my mum about how I was feeling. She said "don't worry, I've never tested positive for RA in my life but I was diagnosed because of all the symptoms". There is no doubt that what she has in RA - with painful swollen joints, and one of her finger joints has even fused into a bend position. Now I'm reading on another post threat about 'Seronegative Lupus' and realising that it's quite a common problem.
This happens so often...blood test results just do not indicate disease activity, and it does make you feel the medicos believe you're not coping. Tears are the expected outcome😢. Treat yourself and believe in yourself. Wish medical science would make lupus a priority.
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