Here's my symptoms - long list!!

Hello, newbie here I am wondering if I have lupus - I display a lot of the symptoms. History: had an extreme case of glandular fever aged 18 and never really recovered. I was given steroids during the illness which helped me to "get over" the GF, but after I came off the steroids I crashed badly, extreme fatigue etc. After years of being fobbed off my GP said I had ME, but at this time (over 20 years ago) there was little support for ME and I was pretty much left to cope on my own. After having my children, my symptoms seemed to die down considerably. If I over do it (for example going out for the whole day would be "over doing" it) I will have to rest up the next day, but I was bouncing back a lot quicker than I ever did before the children. Recovery time is creeping back up again I have noticed in recent months.

So symptoms:

I have a permanent rash over my cheeks - this changes in severity from being fairly mild to looking like a severe case of sunburn from a distance. Up close the rash consists of flat red spots.

I get a rash over my chest, face and neck in clusters after sun exposure - looks like whiteheads surrounded by red, but this can sometimes happen just because I have got hot

I get joint pain especially in the back of my neck, knees, wrists

I get rashes over my fingers that itch

I get extremely fatigued after relatively little effort

Sometimes I have so much difficulty thinking of words I am incapable of holding a conversation. I often use completely the wrong word in conversation so I don't make much sense! Recently I have noticed I can take 4 or 5 attempts to say the right word. It is frustrating and affects my confidence - I don't approach new people much.

I have severe anxiety

I get numbness in my fingers and hands

I get night sweats and often wake in the night feeling nauseous because I am so hot.

I get muscle pain and weakness, especially in arms and legs

I have extremely low blood pressure

I have IBS, often have stomach pain (in stomach not bowels) and nausea after eating

I get lots of mouth ulcers

I cannot take the pill - my GP told me I was high risk because both the combined and mini pill gave me migraine auras 5 days out of 7. I get "silent" migraines (i.e. no head pain) now although suffered with severe headache as well for many years. They wash me out for a couple of days.

My glands will swell up at the slightest little thing - usually in my neck but often down my back as well which is the most painful.

I've been coping for 25 years now and I will rarely visit the GP because I have had such a bad experience over the years. My family GP (now thank goodness retired) told my parents I was hysterical, depressed and it was all in my head and it is extremely difficult to get GPs to look at all the symptoms as one, not individual ailments. My husband is pushing me to try the GP again, so really looking for some support and opinions of my symptoms plus ways to approach the GP.

Thanks for reading if you managed to get to the end of this!

[Paul_Howard Partner LUPUS UK]

Hi Hidden ,

We're not medically trained here, so we couldn't say whether the cause of your symptoms is lupus or not, but you have listed a number of symptoms which are commonly reported by people with lupus or other autoimmune conditions.

I think it is worthwhile going to your GP and asking for a referral to a rheumatologist based on the symptoms you have been having. A rheumatologist will be best equipped to diagnose and treat the cause of your symptoms if it is autoimmune or musculoskeletal.

If you want more information about lupus and how it is diagnosed, you can request or download a free pack from our website at lupusuk.org.uk/request-info...

[Hidden in reply to Paul_Howard]

thank you, I will download the pack now

[ameliavictoria]

Your symptoms are incredibly similar to what I had before my eventual diagnosis of lupus! I am currently 18 years old and suffered from glandular fever about a year and a half ago. I felt like i never really recovered from this and constantly had swollen glands and tonsils, general tiredness and bouts of joint pain. Eventually I had a severe 'flare up' resulting in stage 4 lupus nephritis, which could have been avoided if I'd had a diagnosis of lupus and was on meds to control it. I strongly advise you to voice your concerns to the GP because if your possible lupus gets left untreated, it sadly can attack vital organs! Hopefully your GP takes some urine samples to look for proteins that could be leaking from your kidneys as well as getting bloods taken to look for certain antibodies that would be suggestive of lupus. As for your symptoms of IBS, I personally didn't experience this with lupus but I have been told by my rheumatologist that the gene for lupus is also responsible for coeliac disease (when your body can't ingest gluten) and the two diseases often come hand in hand. Maybe you should ask to get a blood test for this also, or try a gluten free diet for diet for a couple of weeks to see if you get any relief of some symptoms. I hope this helps you out and I would love to know how you get on with your future health!

[Hidden in reply to ameliavictoria]

Thank you for your response.

It is interesting that coeliac disease and lupus are genetically linked. My nephew has coeliac disease and my aunt has lupus and fibromyalgia. Another aunt also has fibromyalgia. My sister has similar symptoms to me and my mum remembers my grandmother "taking to her bed" often. My hobby is family history (got to find something to do when you are stuck in bed!) and I discovered that my grandmother had some children before she married that were put up for adoption. When I tracked them down turned out one of them also had the same symptoms. I wonder if there is an increased disposition within families of these types of auto-immune diseases? I have been tested for coeliac disease and result was negative. You get to the point where you want something to come back positive just so you know what you are dealing with!