New and confused!!

I have been recently diagnosed with SLE. It's all been a bit of a shock as I used to be really active and I am struggling to get the idea that I can't do things in my head. I have been to a rheumatologist which prescribed my drugs and literally sent me on my way. He also suggested I read a book to help explain. Quite frankly I find the book frightening and am now even more confused!!

Every day I seem to be in pain from my joints, some being excruciating. I wonder how much pain to expect and do you just learn to live with it?? I also have constant fevers, is that normal??

I have found this site in the hope someone can give me some real answers. I'm not sure where else to turn. When I talk to people who don't have it they seem to know very little and don't really understand what I am going through.

I have been put on steroids and hydro chloroquine which I started a month ago. My specialist said I would feel so much better, but I haven't. In fact the joint pain is even worse. Is that normal? My doctor is only in surgery twice a week and so I'm finding it difficult to catch up with her.

So many questions and yet I feel like there is no one to ask. I would really appreciate some replies feeling very confused and isolated right now. :(

Xxx

10 Replies

oldestnewest
  • Hello fibipop,I understand how u are feeling and you have my sympathy.I have had SLE for a long time but have only recently found this site,everyone here seems very supportive and helpful.There is a lot of information that you may not get at your doctors and I too have found this over whelming.I have been trying to dip in to things a little at a time and have not yet managed to use any of the info to approach my specialists but I have found that it has helped me emotionaly to realise that everyone is aware of others pain mental and physical and that when i am ready (made enough sense of things to ask specific questions) all these people who understand(truly understand )will be here for me and i for them.I would like to welcome u to the group and am sure u will recieve many supportive and helpful responses,hopfully this will help u to get to a better place where you can begin to deal with what is happening to you and your life.Sorry my response is not very practicaly helpful but i hope it helps to know we all care and understand.my thoughts are with u,and i am sending u abig warm hug.You are no longer alone.Time will improve your coping strategies and knowledge stay with us and try to ride out this initial shock period,its worth it in the end up. Your suffering is real and we are here for you. xx

  • Hi. I have had Lupus for 15 years. It is an illness that is specific to the individual. We all experience different things. What works for me may not work for you. You will have to listen to your body more often. Become aware of what you eat and any after effects, if you do too much in one day, how that leaves you feeling, how medication may make you feel. Steroids should calm down the Lupus, depending on how bad you're flaring, should determine your dose. Plaquenil or hydrochloriquine should help for the joint pains, but again the right dose needs to be given. Vitamins can help with energy levels. Try not to read too much too soon, it can be overwhelming especially when you don't understand the basics. St.Thomas' Hospital has a brilliant Lupus clinic and brilliant doctors who understand and know the illness. I'm not sure how far you are from there, but you could ask your doctor to send a referral letter for you to get an appointment. Don't be discouraged, once you understand your body you'll be able to manage your Lupus. Hope this helps. Xx

  • Hello Fibipop - yes, it's really hard to get used to the idea of an illness that doesn't get better. It took me a couple of years to really accept it, and I was someone who did loads of exercise. I'm afraid that you now need to recognise that you have limits.... hard as that is going to be.

    On the bright side - when the hydroxychloroquine kicks in (and it will take a while for the effects to show, and maybe the dose will need adjusting too), your symptoms should die down considerably. Horrendous joint pain is normal - but it will subside, and you need to keep mobile. Do you swim? If you can - this a good way to keep things going so that you don't turn to jelly - and when your joints begin to improve, you can get back t your normal forms of exercise. It is a question of balance. Even if you feel like your old superwoman self - you MUST not do too much. Easy to say - hard to achieve, and I think few of us do manage it. Rest (I hate that word!) is really important.

    Your consultant sound quite rude and lacking in 'bedside manner' - this is also common I think. Don't be scared though - you can and will live with this and although it is hard, there are actually some benefits. I have become much more tolerant and 'human' - and now feel quite ashamed of my old attitude to illness and pain. And you learn to hang on the the stuff that matters, and just let the rest wash over you.

    Take care - come back and ask any questions you like - you won't get 'medical' advice - but we will understand how you feel!

    :)

  • Hi I do know how you feel the anti malaria takes about 3 months to get into your system, my specialist was the same as yours gave me a leaflet to read. Never explained anything, I think joint pain & tiredness is worst for me. I don't seem to have any let up I am in constant pain my own doctor said go back to the hospital all he wants to do is give me lots of pils but they have lots of effects on me so I won't take them x

  • Welcome... I have SLE too... Just a quick response as Im at work... but if you are on facebook... look for a Mrs. Lupus... American, but she does have a blog with loads of really informative links... Also join some Lupus groups on facebook... They are good and supportive, like this is... It can be quite frightening to read all the litrature but keeping positive and as stress free as possible helps... Hydro chloroquine (Plaquinil.. is the best one of these) is a must... And do not stop taking this... Everything takes a while to get into the system... And when you are tired rest.... Every day is different... You will learn what your body can and cannot do..... Huge huge hugs.... xxxx

  • hi....i was like you anout 6 months ago....when i was diagnosed i went off onto the internet and read so much stuff about lupus i had a mini breakdown! but over time ive talked to loads of people, got lots of useful info from lupus uk, too be honest i only tend to use that website when i need to learn about lupus. Its hard to get your head around what you can now do and what you cant do, you have to make adjustments in your life if you dont you will burn yourself out and make yourself more poorly. The medication i was advised by my lupus nurse takes up to 12 weeks to kick in to your system, ive only recently started to feel the benefits, and i feel so much better. ive also been seeing a wellbeing counsellor who has helped me to deal with coping with a life long condition, if you can get to talk to a professional i would highly recommend this. the most important part is learning what your limits are, learning when to sit down, take a break and chillout. If you do too much ull suffer a flare up, i call these boom & bust, you do lots of stuff/activities and then boom yourself out and ull end up suffering

    its so frightening, cos no1 knows about it, everyone knows about cancer its well publicised so you have to educate people about your illness. Your friends/family need to understand, research it themselves to be able to provide the support you will need. one thing i found was somehting on the internet called 'the spoon theory' its awesome, and when u struggle to tell someone how your feeling its a perfect way for them to understand. I also have a blue lupus wrist band and use this to show people when im having a 'lupus day' as i call them, if they see me wearing this they know im struggling. Recently i went 14 days without wearing this and it was a fantastic achievement. at the minute im learning my boundaries to see how far i can push myself before i start to suffer, whether this is good or not it works for me.

    remember be honest, vocal, educate people....there are so many scary things written about lupus and if you read them all itll make you more poorly. My positive attitude has definately helped me to fight this illness, im not letting this beat me, i can still have a normal life its just learning what you do to achieve that.

    i hope this helps :) keep smiling, keep fighting xx

  • It is so nice to hear back from you all. I have read your comments and gained some great knowledge and ideas from you all. I really do appreciate it!! I decided i should get some advice on the pain and I got a quick appointment with my rheumatologist and have had my doses upped. So fingers crossed. I'll get some results, and the pain may ease off.

    It's so comforting knowing there are other people in the same boat and I am so impressed with this website. Just reading through the blogs and questions I feel less alone already. I know that it is such a rare disease that public knowledge is limited. When I have tried to explain to friends and colleagues they generally have never heard of it. The very few that have already been educated through someone else having it.

    What's crazy is I had never heard of it myself, and when told of my diagnosis through my gp I didn't ask many questions, just walked out pleased that I was diagnosed. Oh if only I could be so naive again lol. It wasn't till I rang my mum almost bragging that it was sorted did I have any idea of what was to come, the voice dropped on the phone and then I started to realise maybe this isn't a good thing.

    Lindsey81 the wristband idea seems really good, that's the other thing people asking everyday how you are, I feel like I'm just repeating myself lol. I know it's them being supportive but perhaps it would be nice for them to know without feeling like I'm going on about it.

    Thank you all for your kind support. :) big hugs xxx

  • It gets better! Once you educate people, I found I was in groundhog day explaining to everyone lol having the same convos at work. People tilting their heads when I explained, the sympathetic look lol I'm used to it now! But at first it's challenging. Deffo make sure you read the spoon theory it's a great help, just print it off and hand it out.....there's loadsa people on here to talk too, but don't think you will get every symptom people write about! everyone is different, I can sit in the sun but wear factor 40 to protect myself, I don't have the rash. I remember reading about it and thought omg I'm gonna die! So silly but you automatically think the worst.uve been diagnosed, now the treatment can start...onwards & upwards xx

  • Hi fibpop, really understand what you feel. This disease gloomed my world when i was in high school and just when I thought I may get rid off it from years, it returned. But I want to tell you that to be confident! Even it may follow us during the lifetime, it is not that scaring. Just treat it as diabetes, high blood pressure. If we take healthy lifestyle, monitor any symoptoms, we can live happlily and normally as other ppl. Also, the good mood is a very useful medicine for any disease. Hope this can help you.

  • Hi Fibipop - pleased that you are taking our comments on board and not feeling so frustrated now...

    One thing that no-one else has mentioned so far is that most Rheumatology Clinics have a Nurse Practittioner attached to them. His/her telephone number should be on the white appointment card / or you can ask the Receptionist how you can contact them. They are often very "clued up" about the various issues and can try to answer any questions you have. If they assess your problem as being urgent, then they can liaise with the Consultant on your behalf.

    Keep posting!

You may also like...