Does anyone with SLE suffer with Hypochondria/paranoia? My latest symptoms are breathlessness and lumps around my jaw, what have I got now??

I've been diagnosed now for a couple of years, but like most have suffered for years, I don't get joint pain. My main complaint is debillitating fatigue. Over the last month I've started to experience breathlessness which is like breathing at high altitude, the air feels very thin. I phoned my rhuemy who said not to worry. I go to the gym but struggle on the running machine (I walk). It's mainly in the upper part of my chest and is there constantly, even at rest. I've also discovered swollen, painful lumps on my jaw line. (not seeing rhuemy about that for another month). Every few months there appears to be a different symptom which causes me immense paranoia. A few months ago I had a sore boob and was convinced I had breast cancer. My doctor sent me for a mammogram (I'm 40) which was clear. Now I'm convinced the breathlessness and lumps is leukeamia! Does anyone else suffer with this hypercondriac type paranoia? I'm a paramedic who is usually very level headed and grounded! I think being on Azathioprine has added to the paranoia, the thought of my immune system not protecting me from grim stuff makes me panic.


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7 Replies

  • hello im new to this site,if you read my blog you will see that i have suffered with hypochondria since the traumatic birth of my daughter 13 years ago,only got told i had lupus a year ago but they think i had it from teens and it caused the prem birth,my doctors have said lupus does cause mental health problems but its like the chicken and the egg-which one came first, i feel for you as i know what you are going through,it could be a side affect of your meds though,talk to your doctors tell them how you are feeling, take care x

  • These feeling s are very natural when you have a condition like lupus. I have had it for 40 years and I still wonder everytime soemthing comes up, is it lupus or a brain tumor, or somehting else. I think labelling your concerns as hypochondria is being too hard on yourself. IT is difficult for the so called experts to distinguish what is lupus and what isn't, so how would you know? When I was young I always thought that when one got into a warm shower your feet always burned and that toes always were red and white. As an adult I was finally told you have Reynaud's syndrome (probably lupus related). Other times I have had symptoms that had nothing to do with lupus but were real all the same. It must be terrible to have to wait so long to see the specialist. ruth

  • I had similar around my bottom jaw line, very swollen and uncomfortable, was diagosed with sjorgens syndrome which causes reduced saliva, dry eyes, now treated with saliva spray and eye drops, lot better, ask your doctor about this just in case.

  • Hi

    I was diagnosed with lupus 2006 but in the 80s I was told I had ME (yuppie flu) I was always having chest pains along with breathlessness but was only diagnosed with pulmonary fibrosis in 2007 so now my lungs are damaged and like you I feel like a hypochondriac at times as I have so many symptoms and always having flares. My GP told me not to ever say that I am a hypochondriac as I am a very ill person. I don't look ill.

    I would ask your Rheumatologist for a scan and lung function test to see what is going on with your lungs.

  • I have the jaw thing, you're definitely not alone in that. SLE can cause tooth/jawline abscesses, and yeah, sjrogens can cause blocked ducts etc.

    I think hypochondria comes with the territory because we have to be really hyper aware of ourselves... also SLE can cause psychological issues of its own. It's not your fault!

    I research, research, research. When I had lung problems I was convinced it was one thing, then another, then another, then another.... but BAM I wasn't expecting Lupus Pneumonitis ;)

  • When I was first diagnosed I suffered from fear and paranoia for a couple of months until finally my mom and dad forced me to go to the hospital. I was afraid of everything and everyone. I always thought someone was watching me and that i was being followed or I had every disease on TV and that followed with bad dreams and nightmares. Then I started to think I was a scary person. Soon after that, I was admitted into the hospital.

  • Hypochondria is defined as anxiety about one's health. With an unpredictable disease like lupus it's no wonder we imagine the worst, so try not to beat yourself up about it.

    Anxiety levels can also be increased by certain medication but also by the disease itself. I, for example, know when a flare is coming because I suddenly become really anxious about everything, from the fact that I have to cook the dinner to the latest twitch in the foot. But I recognise it for what it is and just brace myself for the flare :).

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