SLE with Myosotis

I've got a copy of my letter from my Rheumy to my GP which confirms SLE and a weak positive for myosotis. Is it normal to have both?

I'm worried as to how this could affect my future and especially my muscle strength as I already struggle getting up the stairs and thought this was my extreme fatigue but now think it could be more serious.

Does anyone have any kind words of advice? I know it sound extreme but I knew someone when I was younger who ended up in a wheel chair! Also my nurse did bloods Thursday and asked how my hair was as another patient wears wigs as she's lost all her hair.

I'm seeing my Rheumy again in a couple of weeks and I'm going to ask some straight questions as I would rather know and prepare myself than be in the dark not knowing how bad it could get x

16 Replies

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  • I think we all tend to imagine the worst case scenarios when newly diagnosed. But what I've found is that treatments are far more targeted now and many of these fears and worst possible pictures of autoimmunity tend to not be born out for the vast majority of sufferers.

    I understand the need to learn your long term prognosis if possible but rheumatology is a very inexact science and predicting outcomes is almost impossible. Also rheumatologists tend to see the worst cases too so they are always preparing themselves for these kind of patients. So I now leave doom and gloom scenarios with them and instead I ask for help with maintaining as good as possible a quality of life for my immediate future.

    Often these awful outcomes affect people who have gone many decades undiagnosed, or who smoke and don't look after themselves well or who might be what the medical profession regard as "non compliant" i.e stop taking the meds against advice or cannot tolerate them at all. Or those who always expect the worst because it is often a case of mind over matter to some extent too.

    When I was misdiagnosed with RA six years ago I immediately thought of my old neighbour who had RA and was wheelchair bound, and had died from Rheumatoid lung complications. But looking back - she still outlived both my parents and she had the disease long before the treatments that I was immediately offered became available.

    My late mum used to fear all sorts of things and always prepared herself mentally for worst case scenarios of dementia and malignant melanoma (she had some early stage skin cancer and a terror of dementia) but one day suddenly dropped dead of cardiac arrest caused by undiagnosed severe angina.

    Life is for living and you may well find that the drugs your rheumatologist gives you return at least some of your energy levels and targeted physiotherapy may be very helpful for the myosotis too. Please try not to fear the very worst but instead try to focus on getting used to being diagnosed - it's a lot to take in. Hopefully you will be very effectively treated soon.

    Also read up and try to learn more about medicines, supplements, diet, forms of exercise and potential lifestyle modifications. All of these might feel more possible now that you have a proper diagnosis and will probably have access to treatment and a great range of therapies. Focussing on the most positive of scenarios will probably help you more I feel. Certainly this has been my own experience to date.

  • I think I'm feeling like most in my situation scared and worried! I'm sick and don't like it. I just want to lead a normal life. I wish I'd never taken my health for granted although I've always suffered with underlying issues now I know why, but nothing like this. But until you become ill no one every knows what it feels like x

  • Yes this exactly how I felt too when I was diagnosed. To complicate things I was diagnosed and treated aggressively for RA, but last year was rediagnosed with primary Sjögren's - so kind of had to reprocess this as well. So I do really understand because it's very like a bereavement really - and I think that's what it continues to be like.

    But a large element of the fear does leave, the longer you get into things and realise that life isn't actually that different to how it was pre-diagnosis. Except you have a name and clarity for the pain at least now. So it really does get easier and less overwhelming over time I promise. Just go gently on yourself. Time is a great healer and all that stuff! x

  • Thank you least what I'm feeling is normal and I'm not the only one! It does feel like a bereavement I feel so sad and upset but am trying to be positive and help myself!

    Nothing is ever simple and straightforward but this last year has shown me you do have to push for appts and treatment so going to keep on til I'm sorted lol

    Thank you x

  • You're very welcome. Just cut yourself lots of slack - save your energy for being assertive with your doctors and things will get better I am sure. X

  • It IS a bereavement - you have lost a person very close to you, your "normal" self.

    Your GP may be able to help you find someone to counsel you - because finding out how to accept the new you will help you a lot in the future as you work your way through the maze that is chronic illness.

    These may help you adjust a bit in the meantime:

    batsgirl.blogspot.it/2008/0...

    butyoudontlooksick.com/arti...

    And Twitchy has given some great advice with telling you to cut yourself lots of slack.

  • Thank you yes my GP has given me some contact details I just need to pluck up the courage to call x

  • Words of advice? Don't worry until at least after you have seen the rheumatologist and he has told you what he knows. While these sort of things can't be cured they can be managed pretty well in most cases and no two people react the same. Once you know a bit more the lovely people on this forum will answer many of your questions - but first you need to know what they are!

  • I've seen my Rheumy several times but it's always such a busy clinic I feel rushed and feel I'm not really listened too! I literally said they need to treat me and I've been sick for so long I can't even function. I just don't feel they're forthcoming with information. I want to know how bad I could get? Could the myosotis and lupus mean I could lose all my hair end up in a wheelchair? Just how bad could it be?

    I supplement have cut out gluten and improves my diet, I'm meditating to de-stress and improve my sleep pattern and am starting to exercise from tomorrow. Not sure I can do much more myself so now relying on them to help me rather than let me continue to decline.

    I'm only 43 and my life has deteriorated so much over the last 16 months I want and need help I want my life back! X

  • I do understand - I really do - but there aren't any simple answers to your questions. The diagnosis process is long and convoluted very often - and until they have identified an illness they really can't do a lot. Different disorders need different medications and until they know what it is they can't treat it.

    And how YOU will respond to the medication is still an unknown. Some people respond to one medication, others don't. Some people have no side effects - others struggle and need to try something else. You have got past the first big hurdle - you have a label.

    But even that is only one of the first few steps on this journey with an autoimmune disorder. As my mother used to say "I want doesn't get" - sometimes there are no answers but your medical team will try to find the best one for you. I'm afraid you have to be patient a bit longer.

    Be careful with exercise though - you may make yourself worse rather than better if you try to exercise before they have treated your muscle disorder. Myositis can be managed well for many patients and you will be able to do things once that is achieved.

  • Hi Miss FG. I too am 43 and have SLE and polymyositis. I have had it 7 years. It has been a real struggle to try and retain my mobility during this time. Swimming and aqua have really helped me keep active, mobile, build muscle strength and tone and remain social. My Consultant says that my determination, will power and efforts to swim regularly have kept me out of a wheelchair for all these years. No one know what the future holds. I don't worry about tomorrow, I concentrate on today. I must admit constantly fighting to retain my mobility can be exhausting. Also, I have virtually lost most of my muscle strength in my legs (hips and thighs) three times in seven years, due to lupus flares. Each time it has taken 18 months or so to rebuild them. This is tiring and upsetting, each time it happens. Each time, the muscle strength does not quite build up to what it was like before. I now struggle to walk even very short distances and to stand for short periods. The Dr has said not to worry about the walking too much, but to continue swimming. I walk with a walking stick and have recently purchased a mobility scooter to get me out and about. I am so pleased I have bought one. It is about improving our quality of life. I was so happy to be out and about having been stuck indoors most of the time, other than when I was swimming. At our age, why should we stay indoors? The mobility scooter has really helped me and cheered me up. My husband however, has not quite come to terms with it yet! He feels very upset that I need to use one and that I will lose what little mobility I have left too. I do understand why he feels that. The kids (aged 9 and 12) are wonderful and have walked with me in the scooter to town, so that I can build some confidence in using it!! Bless them!!! I tried to explain to my husband that I have already lost my mobility, which is why I am using the scooter. It is ok. He needs time and to come to terms with it himself.

    Renu xxx

  • Oh bless you Renu! Reading what you put makes me feel tearful but then again I'm having one of those days so have brought myself out for a pamper to cheer me up and do something positive.

    I am looking at exercise and once I have the courage at going to join my local gym and do yoga Pilates and swimming to keep my strength up. Then consultants have checked my muscles and says they're fine so how come I struggle getting up the stairs??? It's how I feel that counts surely? And what I'm capable of doing?

    I'm going to keep positive and try my best not to let it get me down. I think it doesn't help when ppl around us just don't understand that's why this forum and ppl like you are a huge help when we're having bad days xxx

  • I hope my post is of some help to you, but of course it is my view of how I have dealt with it and my experiences. Yours may be different. Sending you lots of positive energy. All the best. Renu xx

  • Myositis can come along with many auto immune overlaps, including Lupus. I have Myositis and collected many auto immune illnesses over 24 years with Dermatomyositis; in this period of time I had 13 years off treatment for Myositis. Many treatments are similar to the treatment of Lupus and at least now something can be done to help difficulties in climbing stairs and extreme fatigue; I always say half the battle treating a illness is getting a diagnosis.

    I would suggest attending a specialist Myositis clinic as they have experience and understanding of treating this rare condition, we have a number of dedicated doctors who work with Myositis UK and around the world working towards a cure of Myositis. I can advise of your nearest Myositis specialist, just let me know where you are in the UK.

    I am admin to the Myositis forum here on Healthunlocked, but would say the most active UK Myositis group is the one I also run on facebook (Myositis Forum UK). facebook.com/groups/2432609... /https://healthunlocked.com/myositisuk

    I have been a Trustee of Myositis UK for 18 years, it has free membership, meetups and a yearly conference that are also free to members. The next conference is in Oxford 2nd July. myositis.org.uk/

    myositis.org.uk/meetings-de...

    If you have any questions I'm always happy to help.

    Jo

  • Hi MissFG,

    According to The Lupus Encyclopaedia, myositis “can occur in 10% of people who have SLE”. It further states that “if myositis occurs in people who have lupus, doctors usually treat it with steroids”. The encyclopaedia encourages people with myositis to exercise regularly as this can help strengthen muscles affected by myositis. Last year we published a blog article on ‘Exercising with lupus’ which you can read here: lupusuk.org.uk/lupus-and-ex... .

  • Thank you that's a huge help! I'm starting my first trampoline low impact class today to see how my body responds and seeing my Rheumy next week to discuss my symptoms and treatment

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