Lupus or anxiety?

[Tigtigs]

Hello,

My gp is currently testing me for lupus, I'm worried he is wasting his time, I had a negative ana test 2 years ago and every doctor I have seen before him has told me it's anxiety and sent me away.

I was diagnosed with social anxiety and general anxiety disorder 9 years ago and about 6-7 years ago I started getting sick. It started feeling like I was getting the flu (all over body ache) but it never came and my joints would hurt. I would also get skin pain usually around my legs and lower back, it felt like I had a graze and would hurt just having clothes touch the area. I had no energy but because of anxiety at the time, I would have trouble sleeping. I also felt nauseous a lot. My doctor at the time said it was probably a form of arthritis but she couldn't tell me what exactly and she offered me something for the nausea and sent me home.

I still get these periods of illness that last sometimes for months, it always starts with feeling like I am getting the flu then I feel sick and in pain but the joint pain I'd now in my hips and knees (which I know doesn't fit lupus), I'm so tired that even just having a shower exhausts me, my kidneys feel like they hurt, I get chest pains and shortness of breath, headaches and what may be a butterfly rash? (Could be rosacea?) and lately when I get sick, I have trouble digesting, the food seems to just sit there for hours and I keep regurgitating it and I put on weight for the first time in my life (20kg) in about 2 months.

In between these times though, I feel pretty normal, I have more energy and none of the symptoms show up until I get sick again.

Sorry for the long post! I think doctors have convinced me that I'm making it all up and I wanted some outside advice. Do you think it could lupus or something else or is it just my anxiety? I know tests will tell me eventually but it's hard just waiting

Thanks.

[Silvergilt]

Hello, I hope other people weigh in here on this, and I wouldn't want to worry you on it, but I can say that you can have lupus and it still not show up on tests. I haven't tested positive for it at all, but I have a lot of the symptoms and signs. I don't show up as having rheumatoid arthritis either, but that doesn't mean I don't have it - my former rheumy explained it as sero-negative rheumatoid arthritis. It's very easy for this to get dismissed as being 'emotional' or 'all in your head' to the point we actually end up believing it, and I did for years...only to realise it wasn't mental, it's physical, and there is treatment available.

So, while I don't have a positive test, I am still affected, and I now have medication to help control my illness (primarily because I found a doctor who believed my symptoms rather than what the tests were saying). As far as lupus goes, I just assume I have it and do some symptom control accordingly - in a lot of ways, the treatment for RA and lupus is very similar so at this point I feel I'm getting proper treatment no matter what label I sit under.

I guess...at this point the question is what you want to happen? Are you seeking answers and treatment? Are you willing to pursue it if the tests come back negative? Is your GP willing to help find answers for your illness and not chalk it up to anxiety and are you ok with that? I know it's a lot to process, and at the end of the day it's up to you how you want to proceed. Many people here tend to want to get to the bottom of things, but that's all an individual thing.

I wish you clarity.

[Tigtigs in reply to Silvergilt]

Thank you for the reply.

To be honest, I don't care what the diagnosis is, good or bad, I just want treatment, something to help in the times where I can barely get out of bed. I have only seen this doctor twice but he seems willing to get to the bottom of this, so hopefully it will lead me to something that will help. I see him again on weds for blood test results, I guess after that, we'll see how much he wants to find an answer.

[Lupiknits in reply to Tigtigs]

I agree with Sivergilts. My ANA is positive, my rheumy has seen butterfly rashes, I have definite diagnosis of Secondary Raynauds and am seen in a Connective Disorders Clinic. I really don't care what they want to call it BUT I get the treatment I'm able to have.

The upper gastric issues were investigated because that's where it all seemed to start, but a bit late because I put it off as stress. There is, unfortunately, scarring in the oesophagus and a lot of problems getting food down when it prefers to come back before reaching my stomach. I'm underweight but not losing more.

My GP is a total gem about pain relief.

I think a lot of us get brushed off, or fear being brushed off, but keep fighting. TBH having well controlled bi polar disorder has , for once, helped me. I can tell them that, look them straight in the eye and not one has said the physical stuff is "in my head "

[Sweetnlow in reply to Lupiknits]

If you have not already done so I would have a endoscopy done. Scarring from reflux could lead to Barrett Syndrome or cancer. I have fault this battle, swallowing pills with a full glass of water only for them to return in throat. Inflammation so bad I was put on antibiodics, throat was swelling shut. Don't ever lay completely down when having these issues. Prop pillows up and learned to sleep that way. Laying flat can allow your esophagus to close and the results is not good.

[Treetop33]

Hang in there. Docs do have a tendency to dismiss and downplay symptoms, especially women (not sure of your gender), and also to make us feel like we're wasting their time. Your symptoms sound very autoimmune, and as far as I'm aware, even if you test negative, specialists or GPs can give you Prednisolone etc. and if it makes a difference, that's one way of working out what it is (a diagnostic tool).

[Tigtigs in reply to Treetop33]

A few months ago, I saw a doctor for severe abdominal pain and they did a urine test which had blood in it. They dismissed it saying "you're probably just getting your period".. then gave me painkillers and sent me home. And I had another doctor a couple of years ago that ran a whole heap of blood tests, I thought he was going to be great until we got the results back and he just printed them out and handed them to me, refused to explain what the tests meant except to say that I might be sick.

I didn't really think about it as a 'woman' thing, I just figured that having anxiety in your medical record was like saying there can't possibly be anything else wrong 😉.

I would have stayed away from doctors for good but my fiance hates seeing me sick so he's helping me find a doctor that will listen.

[Treetop33 in reply to Tigtigs]

There was an innovative programme of doctor training - not sure if it exists still - where adults from a wide variety of backgrounds trained to be doctors. The emphasis was on as much social and emotional learning as medical training. Possibly many doctors lack empathy and knowledge of body holism, but that may be changing too.

I had a session with a consultant recently who 'put me in a disposable box' (is how I like to think about it) despite having all the bloods and symptoms associated with Lupus. Terrible, but possibly a product of NHS cuts and the internalisation of healthcare rationalisation (which there will only be more of soon).

I've been thinking hard about how to get through to him. I saw a good private consultant at London Bridge Lupus Clinic, but honestly can't afford regular consults there.

[Sweetnlow in reply to Tigtigs]

Please go to a specialist for your kidneys, not a family doctor.A urologist! Blood in urine can be from kidney stones which cause pain and blood, infection, cancer, tumor, etc. Even Menopause can cause those symptons. Make sure you have all hormones checked. T3/T4, etc. Good luck.

[whisperit]

One thing that might help is if you are able to demonstrate to your doctor(s) that you understand how anxiety affects you and how you use techniques to manage it. So if you present to your doctor with - for example - nausea and general malaise, you can say something like, "Well, I wondered if it might be my anxiety playing up, so I have been using my anxiety management techniques, including mindfulness exercises and some positive self talk. This has reduced the palpitations I was getting, but made no difference to the nausea and tiredness"

This might make it harder for your doctor to dismiss your symptoms as purely anxiety related?

x

[Tigtigs in reply to whisperit]

Thank you. I have tried this, as has my fiance. I have a reflictive journal that i use as well as mindfulness and metditation. They just don't like that I'm not on medication but as I've explained to them, after years of trying a whole heap of different meds that all just made me worse, some even made me completely crazy to the point I was hurting myself, my psychiatrist decided to take me off everything except xanax which a doctor told me not to take anyway, so I went med free. I did start offering the doctors to go back on meds but that didn't go well and my anxiety became even more of a focus point for them.

The doctor I'm seeing now doesn't think it's anxiety though, which stupidly is making me doubt myself, hence my post. It's just been drilled into me by every other doctor so to have someone take me seriously has caught me a bit off guard.

[Bebe76]

ANA tests can change over time, so just because yours was negative 2 years ago, does not mean you will be negative now. When I started getting symptoms like yours (feeling flu-like and sore knees) they would come and go for a week or two. I was diagnosed about 6 yr later with lupus after the symptoms got much worse. I'm not saying you have lupus - it may very well be something else - but I'm glad that u finally found a doctor who is taking you seriously and not blaming everything on anxiety.

[Shaysuekirk]

There are things that are like Lupus that do not "test" as Lupus. The treatments are the same. I was told for years that my issues are anxiety related, and I did create some "real" anxiety within all of this... However, when I got all of my meds right, most of the anxiety disappeared. Keep working it.

[Tigtigs]

Thank you for all the replies and helpful tips! 2 hours until I go get my results. I'm pretty nervous but I'm hoping I will get some answers or at least be able to rule something out.

[whisperit in reply to Tigtigs]

Hope it works out well. Keep in touch anyway x

[Tigtigs]

Tests came back all fine/negative except for low ferritin. He gave a referral to a rheumatologist at the hospital saying he thinks it's fibromyalgia so I guess it might be all in my head anyway just in a different sense.

[whisperit in reply to Tigtigs]

Hmm. Do you want to do a new post when you've digested that info, if you like? (it'll get lost here at the bottom of the pile otherwise )

[Sweetnlow in reply to Tigtigs]

Good news. God is good. I've had fibro for years. You will be ok. Take care!