Waiting lupus results, just need a rant

[MyEyesAreBleeding]

It's been 9 days since the blood test (private) and a load of bullshit. It's very complex. I'm so fed up. I was just recovering from 9 days of sciatica, and pulled something in the other side of my lower back. A sneeze today multiplied the agony by ten. My range of movement is fairly limited and I've spent most of tonight crying. I have heaps of health issues, I'm basically 90 percent in bed for months due to pain, exhaustion, infections. Being gaslit by the rheumatologist has convinced me I don't have it. But so much fits, if only he'd listened. If not lupus, then it's long covid or a dramatic worsening of my fibromyalgia (diagnosed in 2006 within a year of being beat up badly. Just fed up. Just fuck this. I'm fed up waiting. I was put on a 6 year waiting list in August, but after how bad things have got, I went private.

6 years.

Gotten. Isn't that more grammaticaly correct?

😔.

Sounds awful for you. The system is a joke and delays getting worse. Have they said how long until the results are due?

Did the original rheumatologist take your bloods?

No idea how long. One nurse told me there were delays on this specific test. The nurses who took my bloods had no information on this.

I had to keep chasing the rheumatologist as he needed to refer me to the private clinic, so yes, he organised the bloodtest.

I already had tested positive for dsdna (which is what prompted the lupus idea - but actually when I look back, I could have had it for many years), but the rheumatologist told me there was a particular issue with the dsdna blood tests, that particular lab was giving out false positives. Have you ever in all your life?

So he had me dismissed from the second I walked in. His examination and questions didn't seem to be related to lupus either. About my hands, skin, eyes, trouble swallowing. All very surreal.

I went in with my medical documents, with a list of conditions and medication but he insisted on asking me, making me go through it all?

About 8yrs ago I developed a sensitivity to the sun, so even in factor 50 my skin will come up in bubbles, rashes, heatstroke, weird large red stripes, hives. I'm meticulous with suncream and it's every single year.

I also get the malar rash and have for years, have thyroid antibiodies, underactive thyroid, hidradenitis suppurativa, exhaustion Beyond belief. My esr is 35 as standard.

I'm sorry. I'm glad you guys replied. I feel so confused.

I'm gonna text his secretary now, knowing she won't get the message until Monday.

If is not lupus, it's a proper shit sandwich. But I don't want any of it.

Asking about About my hands, skin, eyes, trouble swallowing is not at all out of keeping with lupus

Dry skin, rashes, pain in joints esp fingers, dry eyes and mouth are all standard questions

Yeah, but he was ignoring all the symptoms I was trying to tell him which are part of lupus. And the list I had handwritten and brought in addition to the medical stuff. Just frustrating from start to finish. Didn't feel listened to. Hoping I will find it 3 in the next few days ❤️

I still haven't heard. I'm now back into back spasms. This is the worst pain I've ever felt in my life. I don't know how I'm gonna get out of bed.

I hear you, I'm sorry you are struggling. Do you have something in the meantime to help with pain?

I'm in pain too, I have pain after episodes of shingles. This too started after something traumatic (emergency surgery in my case) Now I have this neuralgia.

I've got some tablets, pregabalin and co-codomol, but still been in bed today. I find a hot water bottle helps a little

Lupus is often alongside other autoimmune conditions or mimics them. If it’s ruled out, then ask whether mixed connective tissue disease is a possibility.

What was your ANA blood test result and what pattern as that is also a very good indicator of whether you have an autoimmune condition and which one?

I also had neuralgia after a bout with shingles and the pain was excruciating. This is going to sound odd, but I found that drinking a cup of coffee gave me hours of relief! Apparently caffeine helps nerve pain in some people. Inconvenient for middle of the night pain, but when you're in agony anything is worth a try.

@MyEyesAreBleeding I'm sorry that you are going thru this. I was diagnosed with an autoimmune disease last year and found all the testing extremely frustrating. I hope you get answers soon! Take care.

Orangesandlemons77 shingles is so painful. I'm on many painkillers and it's not touching it when I go into spasm. I feel like I shouldnt be in this much pain being on this many painkillers (tramadol, Cocodamol, duloxetine, diclofenac, imepramine for insomnia/pain and diazepan sparingly. I hope you recover soon. Is it just short term? I've been alternating heat and ice, and doing daily painful gentle stretches.

Snowyowl my dsdna level was 67 but this is the test the rheumatologist suggested was "a false positive" due to lab issues.

I have hidradenitis suppurativa, thyroid antibodies, underactive thyroid, sciatica, temporomandibular joint syndrome, episodes of costocondritis, fibromyalgia, bulging discs, I've had 2 types of anaemia in the past year, anxiety, depression,cpmplex PTSD, OCD. You asked another question about a pattern I think - I don't understand the question? Oh I'm autistic as well.

I can't remember the last post I'll have to look again.

The spasms have been just terrifying. My husband sometimes has to tie a hot water bottle to my back (with a dressing gown belt I can undo. Safely). Monday night were the last spasms session which went on for hours. I was unable to lie flat on my back in bed that night.

I'm happy to have someone to discuss with. I rang yesterday again about the blood test and am still waiting. 15 days now.

Thank you for your kind reply gulfbeachgirl. Feel free to complain if you need to.

I'm unsure if the neuralgia will be temporary or not, hoping it will improve but I do still get pain from the areas I had shingles previously so that doesn't bode well.

Yes the painkillers can only do so much can't they. Hoping you get some results soon.

Dsdna isn’t the only blood test to show lupus or an autoimmune condition. Your ana is probably more important and it comes in certain patterns eg speckled and the pattern shows whether it’s likely to be for lupus or Sjogren’s etc. It’s not just the symptoms you are looking at but a range of bloods as well. I know people often do but don’t underestimate fibromyalgia or forget that sometimes symptoms are in place before the bloods catch up for a diagnosis to be made.

Thanks snowyowl

The dsdna result plus my other conditions, malar rash, extreme sun sensitivity, increased widespread pain and exhaustion to the point I'm nearly bedbound, migraines, excessive thirst, it was the whole picture my own doctor considered (plus he said hidradenitis is often alongside lupus, and the thyroid antibodies also pointed towards my body essentially attacking itself). Lots of stuff.

It's the Anti nuclear antibodies on hep 2 cells I'm waiting on now (as I have it written on an envelope)

I've been getting gradually more Ill over the past year.

16 days waiting. The secretary doesn't work Fridays so the earliest I could hear is Monday. If I even do.

That will be 1 day short of 3 weeks. This feels ridiculous for one simple blood test but I guess it just is what it is.

I fell on Friday night, hurt my back, legs, feet - landed on the front of my leg somehow, arms from catching myself. Thankfully I didn't hurt my head or face. 🙏

Still discovering the full effects 4 days later.

Chased the results today again. I'd just like to be given a timescale. That's all. That's not a big ask. Third time chasing (at their advice on their timescales). Three weeks. Maybe 3 is the charm.

I think the samples are only stable for a certain period of time so must be around the limit. If you have a positive ANA then DSdna and ENA are tested in some places adding more time onto the tests. (I am odd I have ENA+ but ANA- last time.) Sometimes they do all the tests anyway.
You can get false positive ANA and DSdna I believe.
I have 2 existing diseases and am waiting for another ANA /dsdna etc. Over 2 weeks.
Good luck

Thanks for the comment. I'm a bit overwhelmed with it all to be honest.

It's 4 weeks and 2 days now and I'm so frustrated.. Did you get any results yet? Like I've paid for this, this secretary won't respond to my contact attempts. (1text at 2 weeks, as advised by her, 1 text at 3 weeks, 1 voicemail at 4 weeks).

Hi OP, I didn’t want to read and run. Sorry you’re having such a hard time. I also have cPTSD, OCD and have been investigated for lupus (and other things via rheumatology) since I was a teenager as my ANA came back abnormal.

I appreciate this might not be what you want to hear as I know a diagnosis can be important in these situations, especially when everything seems to fit, but all my rheumatology symptoms turned out to be somatic symptoms of trauma. My blood work came back abnormal and I had every symptom so docs etc were convinced it was autoimmune but they just couldn’t quite work out what was going on. Ten years later, it’s turned out to be a physical manifestation of trauma. There’s plenty links here too with fibromyalgia. This might be an avenue to look at.