Severe health anxiety - scared I have lupus

[JS9595]

Hi everyone

I am so glad to have found this forum. I’m 31 yr old mum to two little kids and I suffer from severe health anxiety. It all started a few years ago when I was misdiagnosed with breast cancer. It was the scariest time of my life and I still can recall the stress like it was yesterday!

recently I’ve been feeling a bit off, dizzy etc so I went to the doctor to get my iron checked (I do occasionally have low iron) but everything came back fine.. except my ANA came back positive (and a pretty high positive at that). The doctor said that we will have to explore it further with more blood tests, but I can’t do those for another three months. She mentioned they would be looking for lupus.. once I heard that I FREAKED OUT.

I have been crying and googling non stop about lupus, and all the complications that come with it. I’m scared I’m going to die and convinced myself I have it. I feel like my mental health and stress level is back where it was when I experienced the cancer misdiagnosis. I can’t sleep, I can’t focus on my kids and I am convinced I will die.

I went back to speak to my doctor and she said that she was while I did have a positive ANA result, it does not confirm I do have lupus or even an autoimmune disease, but I have to wait the 3 months before the next blood test to rule it out.

that made me feel a bit better but only for a short amount of time. I am back to googling, scanning my body for ANY and ALL signs of lupus. It’s making me crazy. I’m scared it’s attacking my brain, lungs and heart and I’ll have a heart attack!

I am not sure what to do, or who to speak to. I just want to know I am ok for my kids.

Any advice, support or similar experiences would be greatly appreciated.

much love!

[Sophie_M]

Hi JS9595,

A warm welcome to our forums. I can hear that right now you're feeling really stressed and overwhelmed about this news from the doctor, so I'm glad that you are reaching out and talking about it.

Health anxiety is something that can be really common, and what's really hard about the experience is that the harder we try to solve the anxiety or find answers, the more we can end up feeding it. For a lot of people, breaking out of the cycle involves finding ways to manage these feelings of anxiety without necessarily recognising them as real or true.

I'm sure that the rest of our community will also chime in, but in the meantime you might find it helpful to have a read about this article on health anxiety; you can also call our 24/7 Support Service at 1300 22 4636 to have more of a chat about this whenever you need.
 

[Truc]

Hi miss,

I heard some misdiagnosed cases before and turned out the anxiety may have made them sick and ill even more than the real sickness, I am not an expert in here, so I am just here to share my advices when we face or wait something uncertain for a quite long time, to be honest, life is short, I think we should just enjoy every day as much as we can, as I am learning pharmacology now, There are tons of dieases we can not find the solutions, what can we do ? We can not do anything, somehow things happened, I do not say we should be pessimistic here, instead, think differently, for example, if I have a cancer and just have one year to live, ill just forget the time the cancer give me living, as long as i can live one day or one moment, i totally enjoy, because we all living in an uncertain world, what do i mean by that, am i sure when i go out to work, i will not get a car accident and die tomorrow ?, no i am not sure about that, which means a cancer give me a year to live but a car accident is not a sickness but make me die even earlier, so there is one thing absolutely certain that there is nothing certain, so live fully abd happily as any moment, the world around us will try to balance by itself, the drop of water drops on the ground will be transformed to the sky and will be dropped again, thats how life, fate, destiny...etc will balance for us, we do not have to do such things in my view. I hope you find it useful.

[Bella78]

I am so sorry to hear.

I am new to the forum; I signed up today, and I am over the age of 40.  

I was searching on SLE- Lupus and I came across your post. I was touched by your post and gave me the courage to sign up and share details with you.

Based on my experience and what I go through, I am happy to provide you with details.

Around COVID; I started to have eczema on my hands, my fingers would turn super white, and therefore I would run hot water on my hands for at least 10 minutes, it's not ideal as it may cause spasms. In my case, I didn’t. It was itchy, red and hot. I had to use prescribed cream on my hands and wear eczema gloves. It went on for months, I was in tears, constantly cold and my wounds wouldn’t heal.

GP kicked off blood, and urine tests and referrals to one specialist after another. Had many MRIs, X-rays etc just to rule out the ifs and buts. It's expensive, this is my third year seeing drs / specialists etc. I am a high risk and could attack my organs at any time/ day. Unfortunately, I have internal and external lupus. I have been advised not to be in the sun as it’s a trigger, no cure for Lupus and I had to change my diet, no deep-fried food or junk. I see specialists for:

• Liver
• Lupus – rheumatologist
• Constant blood test
• Medication – tried every med. Sadly, I had different reactions to the others. At this stage, I am on it forever.

If the GP refers to a specialist or a specific test, I encourage you to proceed just to make sure you are ok. Lupus is tricky and can mimic symptoms. If unwell I encourage you to see your GP.

Unfortunately, you can't ignore any symptoms, and keep up with apts and tests. It's extremely important. As for the dizziness, I get that too, sometimes I pass out but I am conscious, takes me a few minutes to get back up. It scares me as I live alone. I even get scared going on public transport in case something happens to me.  

Regarding your mental state, I encourage you to see a psychologist/ psychiatrist.

Lupus can make you feel tired, fatigued etc, I was freaking out, I was constantly reading, searching you name it. I am also diagnosed with chilblain and I have pain in the joints. There are times I don’t want to get out of bed. Stress also is a big factor. I do get the butterfly rash which is super itchy and it burns.

I completely understand the fear, do what you can to stay healthy.

If you have further questions, feel free to ask, happy to assist.

Have a blessed day.

[Eagle Ray]

Hi JS9595,

I feel for you right now and I know it can be overwhelming dealing with medical uncertainty. Firstly, a positive ANA test can suggest autoimmunity but you don’t know yet if that is Lupus or any other autoimmune condition. Even if it is Lupus you may not develop it to the extent of the worst case scenarios you read about on the internet. Many people have Lupus without ever getting the worst symptoms.

In 2020 I was diagnosed with an autoimmune liver disease, primary biliary cholangitis (PBC). I was given outdated information by both a GP and specialist that told me my liver would fail in about 10 years. It was initially scary but I soon learned through my own research that with current medications more people than not don’t get to that stage with the disease. I also found some good dietary interventions and supplementation that balanced my liver readings. Those with the condition often develop other autoimmune conditions and at times I’ve shown signs of Sjoegren’s syndrome and Lupus (including the distinctive butterfly rash). But I’ve done a lot of work on healing myself which in my case has involved a lot of emotional healing and this has led to some significant improvements in my body. I have learned autoimmunity is not a one-way street or inevitable decline. This may sound weird, but it has even felt like a gift to me as I have learned to care for myself so much better and I value life in a renewed way.

I’m on an online support forum and other people there who developed PBC in the 90s and early 2000s were told they had about 2-3 years left so they were getting their affairs in order. That was before there were any meds for the disease as there are now. Well it’s 2024 now and those people are very much alive and actively participating on the support forum and living good lives, even with the disease.

Things can really improve with autoimmune conditions and people can go into remission. I was experiencing debilitating cognitive effects at one stage but then I switched to a different med that protects the blood-brain barrier and I greatly improved. But most of all I have improved through my relationship with my body. I have done somatic work with a psychologist in relation to past complex trauma issues and this has really helped in alleviating autoimmune processes where the body is attacking itself. It’s still work in progress and most recently I’ve appeared to develop mast cell activation syndrome. But again this has been an opportunity for me to understand what my body is doing and why and to find ways to encourage it to not attack itself and act like there is an emergency. I’m now starting to heal it.

So firstly, you may not have Lupus anyway. But if you do, there can be much that can be done to alleviate symptoms. My psychologist told me about a friend of hers who had Lupus. She also had a lot of past trauma. She has since done deep trauma healing work and no longer has the symptoms of Lupus. You may not have a trauma history but sometimes we are carrying emotional burdens we are not fully aware of, and healing those things in us can have a profoundly healing effect in the body.

I hope that helps a bit. See if you can release the worry and come back to the present moment as Truc suggested. Sending support to Bella78 too with what you are dealing with.

Hugs,

Eagle Ray