Pushed from pillar to post

My story is a long one, like a lot on here. Many many years ago (when in my twenties) I had the butterfly rash and a dermatologist said at the time it was Lupus but couldn't be 'definite'. Creams etc sorted it and I went on my merry way with no other symptoms (I'd never heard of lupus and just thought it was exscema of which I've had on and off for years along with asthma).

Fast forward about ten years and boom I have chronic urticaria, swelling, crushing fatigue and pain. GP said it was a virus. A consultant A&E specialist (I was rushed in when my mouth started to swell) said 'lupus'. I was sent to an immunologist but this was six months later and after some fantastic immunosuppresant drugs and steroids I was okay. The Immunologist suggested lupus but again, didn't bother to test - he said sometimes there are false positives and sometimes false negatives. So off I went again.

Now it's another ten years later and I feel dreadful again. No rash this time (although urticaria crops up occasionally and always has done - (I've always assumed it was 'just me being odd and ultra-sensitive), but I ache everywhere, my eyes are blurred, I'm dizzy and feel drunk.

I've had a ton of blood tests which came up with vitamin D deficiency (I've been on megadoses for this) and MRIs - all clear. Lumbar puncture test came up with antibodies in the spinal fluid but otherwise clear (the neurologist thought at first it was MS). I suggested lupus to the neurologist who said 'no' with absolutely no argument - although three other consultants have suggested it may be. There has been no explanation as to why there are antibodies in my spinal fluid - is this normal?

Now what? I'm at the end of my tether. My vitamin D levels are back to normal yet I feel like I've run a marathon every day - just six months ago I was fit and well. I can't help thinking this is a lupus flare but no-one believes me.

Sorry for long post but I feel I need to get this off my chest and feel at home here. (I've read some of the posts about symptoms and nodded 'yes yes yes got that had that...).

Thank you.

21 Replies

  • Just an add-on, what annoys me is I used to be fairly fit, just last summer I was jogging fairly regularly and then wham this has hit me and my GPs just don't seem to be bothered. I can barely walk 100 yards now without sitting down. So this time I want answers.

  • Yes, and ditto to all of your above symptoms. I am pretty much exasperated with the medical profession to tell the truth so I don't go to the doctors very often now at all. Like you, I was coping on and off for years, but this last summer I went to a 5-day rock festival, camping out, and 4 gigs in London, and it has all but wiped me out, and instead of flaring like they usually do my symptoms are now pretty much constant no matter what I do. You are not alone x

  • So sorry to hear your story as it's very similar to mine and feel exactly like you just now also , 20 years ago I had a rash on my face and was given a biopsy and told I was a lucky lady that it wasn't systemic it was discoid lupus I remember checking the library and at that age to be honest was horrible to have spots all over my face as I was never a spotty teenager but with creams I went on with my life until I was 30 when my back prolapsed 3 times and at 34 ivf failed as I was unable to carry a child but did have 1 at 18 , I then took 2 heart attacks at 36 and have now got a valve leaking , irregular heart ,and murmer , I did notice my hands and feet were always blue and swollen then my joints in my fingers went misshaped and me myself suggested to my gp I think I have sle and as my gp is of Chinese origin and his mum suffered from this agreed to have ana tests done which were positive I'm now 44 and feel so down that every illnesses I have had was probably sle and only found this out 6 months ago since then I've been put on all different meds and injections but why it's just out the blue now knocking the stuffing from me I don't know but have never felt so tired , depressed in all my 20 years I've had it the rash has disappeared until I go in the sun I believe like you why after all these years although it's not been good that now I feel soo tired and depressed has it shown in ana or has it just been I've had it and blamed other illnesses sorry mine is long too and hope this helps as I'm also stumped with this

  • Sorry you are struggling to be taken seriously. Have you see a rheumatologist yet? Did the immunologist who saw you and put you on the immunesupressant drugs keep you on their list and have you continued with these drugs and steroids? Sorry for all the questions but it isn't quite clear to me why you aren't under a rheumatologist.

    I saw a connective tissue professor in May for a second opinion and he felt I didn't have Lupus, despite skin issues, but had RA, as I had been diagnosed with a few years earlier - plus Raynaud's and Sjogrens secondary to the RA. He said that positive autoantibodies are useful as an indicator but he doesn't go by them much - he explained that if he did he would be out of a job!

    I did some research when my skin was very bad (drug reactions as I have eczema abd allergies) and read about a type of Vasculitis that causes chronic urticaria. Vasculitis has many similar symptoms to Lupus and many specialists just aren't specialist enough to identify it as it has many, many forms. It may help for you to find a rheumatologist who specialises in Vasculitis and Lupus.

    There is so much overlap between autoimmune diseases and allergic responses and conditions such as Rosacea, which can also be triggered by sunlight - that the most important thing is not the name of yours but that your autoimmunity is recognised and treated with immunesupressants - as many of these conditions are treated with the same meds anyhow.

    I'm still searching myself and am very drug intolerent. I don't necessarily think the professor I saw was right that my primary disease is RA rather than Lupus because I have a small fiber neuropathy which is currently being investigated by a neurologist and this occurs much more commonly in primary Sjogrens and Lupus than in RA. I think some of us, perhaps including you, span many connective tissue diseases. This might be undifferentiated connective tissue disease or mixed connective tissue disease depending on your autoantibodies and the severity of symptoms. Despite the diagnosis of RA (I am also hypothyroid) I personally think mine is UTCD - which has a better outlook than MCTD and I'm an optimist by nature!

    I try to keep it under control with healthy lifestyle, AdCal D3 and extra D3 and exercise daily plus a low dose antidepressant for the nerve pain. I have been lucky to have a good GP who takes my symptoms quite seriously but even then I've had to push hard and with the neuropathy I have sustained irreversible nerve damage I'm told. This might have been avoided if I had been referred when it started 18 months ago!

  • Twitchytoes, you have put it perfectly. I think it takes a highly experienced Rheumatologist to identify and treat a condition that doesn't tick all the right boxes. Autoimmunity must present as a diagnostic nightmare and the associated conditions can and will do exactly as they please at any point in time. I have given up trying to understand the pattern of mine, I have spent a long time trying to get to the root of some unnerving manifestations but I think they must be Luus related in the absence of any other answer. Like you, a supportive, pro-active GP and greater understanding of overlap is helping me to take the often bizarre symptoms in my stride. Keeping active helps as does keeping stress levels to a minimum where possible. Resting when necessary s something I'm still working on!

    Best wishes to all.

  • When I eventually saw the immunologist six months after that flare up (this was over ten years ago) I was feeling much better - that was after I had been on immunosuppresants and steroids. I had a ton of allergy tests - I'm allergic to a ton of foods/chemicals/drugs. But wasn't given any drugs, just an epipen and told to carry anti-histamines everywhere (which I do). The immunologist mentioned lupus but told me to go away and live my life. I was then discharged as I seemed well. Apart from the odd flare up of hives/urticaria if I go out in the sun or get overheated or stressed I've been fine since then. I've always assumed hives was a natural reaction to sun/stress... but apparently not.

    Nobody has ever mentioned a rheumatologist...

  • Without blood tests no doctor can diagnose Lupus 100%

    10 years seems a long time between outbreaks for it to be SLE but you need a (ana blood test) antinuclear antibody while you are ill.

    Hope you get answers

  • Hi Gary, just to say that my ANA barely flickers even when my knee joints are too swollen to get my toes to the floor. My C3C4 and WBC will drop and my ESR may rise a bit. I don't have RA. Anemia may be rapid and severe but that's about it for me. I don't think I am alone on this.

  • There is no definitive blood test for lupus!

  • Hi smellydunlin,

    I'm sorry to hear that you are experiencing difficulty getting a diagnosis for the symptoms that you have been experiencing. It might be worth seeking a referral to a lupus specialist who may be more likely to identify sero-negative lupus or provide an alternative diagnosis. If you let me know whereabouts in the country you are then I can let you know who your nearest lupus specialist would be?

  • Paul - I live in North Yorkshire. I've never heard of a lupus specialist! To be honest, when previous consultants have bandied the word lupus to me I've been ignorant about what it is and the original consultant (a dermatologist) mentioned it as discoid lupus as if it were just similar to excema! It's only in the last few years when I've had a skin flare up and looked up hives etc that I've found out more about it. It's always been there at the back of mind.

    The immunologist told me that he was 90% certain it was a lupus flare up but I may 'never have another, or it might be another ten years' or indeed I could be 'ill tomorrow' - his words. Those words have stuck at the back of mind for the last ten years.

  • I think that your nearest lupus specialist would probably be Prof Emery at the Chapel Allerton Hospital in Leeds.

    If you need more information about lupus then I would be happy to send you one of our free packs? Just send me a private message or email paul@lupusuk.org.uk with your name and address and I'll pop one in the post for you.

  • Thank you again, Paul. Have PM'd you.

  • Try to find out if you have any allergies. Nickel can be found in a lot of food you eat as well as jewellery. Also I am allergic to steroids too.

    If you are taking Risederonate for osteoporosis be wary as it can cause swelling and bruising.

  • I have had a ton of allergy testing many years ago. Nickel is one of them. Along with strawberries, kiwi fruit, bananas (all the latex associated fruit), grass pollen... the list goes on.

    At the moment I'm only on mild painkillers. My GP won't prescribe anything. I can't take ibuprofen - I swell up.

  • Shameful lack testing I suffered similar you need see a rheumatologist. My dear it can be long road..so far I'm diagnosed as undifferentiated connective tissue discease.

  • Just wanted to say thank you to everyone who replied. I've had more support on here than I've ever had. I'm totally lost. I know the years between flares are long (if it is lupus). But I'm now wondering as everytime I get stressed/overheated or go out in the sun I get hives in odd places (it's a bit of a joke amongst my family and friends but to me it's annoying and embarrasing). I also find my lips sometimes swell for no reason. I take a clarytin and put it down to eating something I shouldn't have. Sudden fatigue has always plagued me over the years but I've always put it down to doing too much or an unidentified virus. But now I wonder.

    Thank you again for this wonderful forum. Good luck everyone in getting your answers.

  • I thought I'd add to this by saying I'm allergic to the sun too and can't sunbathe as I come out in prickly heat rash and have to wear a very high factor cream for protection.

  • I have gone through the same it's been at least 10 years now all I can say is some of these consultants are about much use as a ashtray on a motor bike

  • I love that, onamission, my dad says "as much use as a chocolate fireguard".

  • I think there are so many of us like this and it is so frustrating. I had a 'flare' or whatever over Christmas and am just getting back to some kind of normality, but dare not over do things or I go back to square one.

    Like you I only keep my doctor informed of what I am doing, but I have found homeopathy has and is helping me. I find I have to listen to my body the whole time in order to keep reasonably free of very unpleasant and debilitating symptoms. If I couldn't muscle test, I know I would be ill all the time because before Christmas when I was reasonably well I stopped testing because life got busy as it does for Christmas. When I had the bad flare/symptoms I had no choice but to go back to muscle testing. What we have to realise is that there are those of us who for whatever reason have to follow the path that is right for us. This can include diet, lifestyle, exercise, sunlight, etc. We just can't do what others seem to be able to do. I know this doesn't help, but it is the way we seem to be and most doctors don't understand this.

    I find meditating helps, too, because things come to me in meditations that I need to do and this can help my symptoms, too.

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