Overwhelmed and feeling like a fraud!

Hi

I am currently going through a diagnosis for a suspected auto immune disease, which my rheumatologist believed could be 'mild' Lupus.

I have been going to the GP with various symptoms, fatigue, depression, pains in my chest, breathlessness, for about 2-3 years. As a Mum to two small children and a full time job, I always got told that its not surprising that I'm tired!

This June however I woke up feeling unable to move without pain, I had run a 5k earlier that week and thought that this was a delayed reaction, so I pushed through - although later that day all of my joints started to swell ankles, knees and wrists and I started to feel faint. I went to hospital and they said to go to GP in the morning for blood tests. I was then unwell for two weeks - found it difficult to get out of bed, I needed to sleep all of the time - it was like having flu! The blood test came back ( I didn't really understand them and I don't think my GP did either) and I was referred to a Rheumatologist, she explained that some suggested lupus and some didn't, so I repeated some tests and had more done.

I am now waiting for those results and not sure what to expect, I feel I have signed up to this site preamaturely but I have found the posts so helpful and I can relate to a lot of the experiences shared, I realised that I have the butterfly rash for years and put it down to bad skin - Am I wrong to self diagnose like this?

9 Replies

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  • Hi, I think that Lupus is very much like you are experiencing. Nothing seems to be written in stone, all symptoms seem to be different for different people and quite often you don't get a definite underlined diagnosis. It all seems a bit vague with more tests tagged on the end!! This is what probably makes us feel a fraud. I have been 'diagnosed' with Lupus this summer after years of joint pain and fatigue. I went to see my GP because I had a sickness bug for a month and mentioned that my joints had been hurting for ages and could she give me anything. She did lots of blood tests and suspected I had Lupus straight away. Within a month I had seen the Rheumatologist and was on medication.

    It all still seems vague to me.

    I hope you have good news soon x

  • Thank you K8Kent!

  • Hey. I am being treated for lupus through symptoms alone as all my bloods are fine. You don't always get a positive ana test even if you have lupus. I did have a positive test for the genetic marker test, can't remember what it's called, which can suggest lupus. My symptoms were gradually getting worse over time. I really feel for you and know exactly how you feel. Flare ups for me feel exactly like having the worst flu with terrible joint pain and stomach pains. Hope you get some treatment soon to help. Brilliant on here for information and not feeling alone.

  • hi i went on like that for 12 years i had never heard of lupus or been tested for it (to my knowledge) i tested positive for ana and had 4 biopsy that was 3 years ago , now every consultatant i see i asked to be copied into the letters as you will find you are kept in the dark otherwise, everytime i see a consultant they tell me i have something else to :9 raynaulds/syjorns/emphazema/copd/ibs hope ive helped

  • I feel like each time I see a doctor they describe it as something else, It has been described as mild lupus, like lupus, or a connective tissue disease with some symptoms of lupus and hughes syndrome on the side. I keep a note of all my symptoms in a diary so that I can keep track and give the doctor as much information as possible. I tend to find it hard to remember everything if I don't and if I feel ok during an appointment I find I downplay the symptoms which make it impossible to get out of bed or move about without pain. Please don't feel like a fraud, Its hard, i know - I spend a lot of time thinking I am making it all up but I know that is not the case. The symptoms are real. I hope you have some good news soon.

  • Thank you so much for all of the messages! I think that noting down the symptoms and asking for copies of the notes are all really good tips and I will do that! I have my appointment tomorrow, perhaps I shouldn't expect answers but more information...!

  • Thinking of you....it's quite a journey to diagnosis...hang on in there though. xx

  • Hi there. Hope things aren't too bad today. I think a lot of us have the same sort of experience with our diagnosis. My bloods usually come back pretty normal but my rheumy is treating me as if it is Lupus or psoriatic arthritis or undifferentiated connective tissue disorder. The simple truth is that exact diagnosis is very rare when dealing with the auto-immune conditions we have. Most rheumies are used to dealing with symptoms rather than test results but it can be a bit disheartening not being able to stick an exact label on our illness. Just don't let anyone get away with thinking that you don't have a problem.

  • Hi hun I am in the same position mine started two years ago just before I started Uni, still no diagnosis, bloods come back ok but my ESR is constantly high. I have constant pain, fatigue flu like symptoms swelling and generally feeling un well. I am being treated for the symptoms as if I have Lupus. It is stressful and upsetting but just remember we are all here to support each other. Its good you have been referred and do not feel a fraud I have felt the same and gone through so may emotions. The only advice I can give you is to try and keep a note of all your symptoms so you don't forget every time you see the consultant as symptoms come and go and can change quite quickly. please keep in touch and let me know how you get on, gentle ((hugs)) :-)

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