Ive just been diagnosed with mild Lupus! Im currently feeling confused! Ive been in a lot of pain for 2yrs!!

The consultant was very matter of fact! He emphasised the word mild and I'm now feeling very unjustified for ever having complained about pain!! Life for the past 2yrs has been hard i had a new born and at times couldn't even hold him, the simplest of

tasks at times were hard to do!! I brought my partner with me when i got my results so that he could understand that i wasn't making this up and that at times i would need his help more!! Yet i came away from my consultation feeling like i had exaggerated everything!! Which i know i haven't yet have that doubt!! I was given hydroxychloroquine tablets to start taking!! When I read the leaflet it said your doctor should carry out an eye test b4 you start taking them so that over the years they can monitor your sight to make sure it hasn't been affected!! He never did this with me nor was i given any info on the condition!! There was no explanation of what would happen next if anything!!! I asked would these tablets take away the pain ect!!! He said yes and that the symptoms would stop!!! I guess what i really want to know is this true and also am i alone in feeling like this?? Thanks x

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  • hello vonnie80

    firstly please do not think that youre alone in feeling like this. from what ive learnt from my lupus buddies on this wonderful site the term "mild" means no organ involvement. it does make our symtoms sound almost trivial and as if we are fibbing about how we feel. we are not though, your rhuemmy sounds about as helpful as mine, as I wasn't given any info about lupus from her, I have learnt a lot from people on here and my knowledge is growing.

    I think youre amazing coping with lupus and a newborn! my children were older at 13 and 6 years when I became poorly so were more independent than a bubba.

    im on hydroxyl have been since 2005 and it made my butterfly rash disappear although I have joint pain and fatigue everyday, I cannot have a higher dose as it gave me cronic headaches. I am learning to live with this "hidden wolf" as I call it, as yoy prob already know the symtoms can change day to day.

    as for symtoms they vairy from person to person, listen to your body and rest when you can and don't be afraid to ask friends and family for help

    I think ive rambled on a bit,sorry. just wanted to say stay strong and use your spoons wisely. the word mild doesn't mean mild pain/symtoms x

  • Thank you so much Caninecrazy!!! U defo didnt ramble on!!! Im glad im not alone on this!!!! Wondering today if i might seek a 2nd opinion!! Someone who can be more on a humanist level and doesn't treat people as numbers! Can this condition progress?? Also do you find with mild lupus that you are out of breath quite easily?? Im currently experiencing a flare up and feel like my kidneys are ready to burst!!!! Is this also normal during flare up!!!! Does this medication prevent flare ups?? So sorry for asking so many questions! Thanks loads for your advice x

  • Hi vonnie80

    Wow welcome to the world of docs and there lack of information I've been there many times. When I was told I had lupus I had never heard of it so asked rheumy what it was and she opened her draw and handed me a booklet without saying a word I took it went home read it then cried my eyes out then went straight to my GP and he explained lupus as best as he could .However having now had many appointments with my rheumy I have learnt a lot but my rheumy has never ever said that the symptoms would stop and they haven't so i personally think that's a bad assumption.

    My advice is to take things one day at a time and have good communication and support with your GP go to them with any questions or worries and hopefully things won't seem so bad.

    The hydroxy tablets you have been given is usually given to help with pain and fatigue but for some people like myself I couldn't take them as I have a sensitive stomach and they made me too I'll. but remember they take a couple of months to start working. However I'm not too sure but I believe they can really help with pain but not for everybody.

    The eye test is important as a precaution due to the side effects of the drugs but I had a really good chat with my pharmacist and he said it's very rare.

    My advice would be to write down all your fears,worries and symptoms however small and next time you see rheumy ask if you can go through them together they usually do but you need to ask its important to keep in control.

    Hope I have helped

  • Thank you very much Pinky56 this has been very helpful!!! Im going to visit my GP first thing in the morning!!!! My Rheumy seems very cold!!! I know its their job and they don't get emotional something i will have to get used to i suppose!!! I have been waiting a long time on a diagnosis i never ever considered Lupus!!! I have been in a lot of pain and fatigued for 2 years now since giving birth to my little boy!!! I was diagnosed at 12 with colitis and later IBS!! I was convinced that my abdominal pain was from this i never expected it!!! Yet when the consultant put this forward and more or less told me this is ur condition I was taken aback!!! I went away and did a little reading on the symptoms and was in shock!!! Is it normal also to feel at times like you are losing ur memory and can be confused!!! Other times i have felt like i was taking a stroke!!!! I have constant headaches but had put those down to the epidural i had whilst having my little boy!!!! These headaches feel like little electric shocks running through my head the tip of my tongue goes numb with pins and needle type feeling!!!! Is all this very common with mild lupus?

    Sorry so many questions at once!!!

    Thank you for your advice its very gratefully received x

  • yes I do get out of breathe easily, im seeing my rhuemmy on 7th feb (a wait of 11months due to hosp changing my apt) so I have written down new symtoms and old ones that havnt eased too. im determined to get proper answers as my rhuemmy can be very off-ish/cold and don't answer me directly.

    I too panicked when I was first diagnosed in 2005 but thanks to this site I have learnt a lot and can cope more with whats happening to me. I do still have bad days when I cry but we have to battle on and make them hear us and like you said to be treated as a human being and not a number would be great!

    hydroxyl doesn't prevent flare ups as far as I know,it helps dampen the effects of lupus, eg; joint pain and butterfly rash etc. but it does take a month or two to feel a little brighter.

    im currently finding a new GP at my surgery as my old one who knew about lupus has retired so then I have someone "on my side" :) x

  • lupus does cause "brain fog" where you forget things and say things backwards and stop mid sentence too. I have a kitchen calendar that I write who ive phoned,what bills ive paid,birthdays,work hours etc etc as my memory is bad. I write list after list! lol

    I have visual migraines that I never had before lupus but I don't know whether lupus causes them,i am lucky as I don't get the thumping pain of a migraine just flashing lights,dizziness and naeusea. x

  • Thanks loads for this I'm very grateful finally people who can understand!!!! I think i will be visiting my GP in the morning!!!! Hopefully he can help me understand some more!!!! I think as you i will record my symptoms!!! The 2 appointments I've had with my rheumy were very overwhelming for me and i now need to take control of this and make sure he hears me the next time!!! Im awaiting my nxt appoint which is in 3mnths so i will consult with my GP and come up with a plan of action!!! This pain and fatigue has consumed me for 2yrs, missing some important and precious moments with my little boy becuz of it!!!! Thanks for this x

  • Hi there and so sorry to hear about your diagnosis.

    Hydroxychloriquine for me was a great drug. It took a good 3 - 6 months to work but all of my symptoms improved on it. I get my eyes checked at my optician annually as a precaution but eye problems are rare.

    Mild lupus, as the others have said, means no organ involvement, but that doesn't take away from the awful pain and fatigue you will have. But from a consultants view point he is focussing in life saving and unfortunately doesn't have so much time for quality of life. Hopefully this will change....I live in hope!

    When I was first diagnosed I joined Lupus UK. They provide lots of good leaflets, there is a DVD you can get from them which helps to explain things, they have people you can speak to by phone and there are local support groups. This complements the support you get here by people who know what you're going through. You're not alone.

    Best wishes.

  • Thank you so much for the advice!!! I actually can see the consultants view when you put it like that!!! Im sure he will warm up lol thanks x

  • Hi Vonni, I hope you are ok...it is such a shock at first with a diagnosis and I can relate as my first rheumatologist was quite flippant too. I have since swapped and looked at The Thomas' Lupus Website (Lupus hospital in London), for a list of reputable rheumatologists reknown for dealing with lupus. It took me two years to do this and I wish I had done it sooner. The one thing I would add to what everyone has said is ....yes the placquenil (hydroxy) does help massively with the joint pain and fatigue. However, do monitor it too as for me until I went on a DMARD (disease modifying drug to dampen down the immune system) things were not under control and I was in a lot of pain. It may be that this wont happen to you but do keep it in mind that there are other options to add to your hydroxy prescription if things do not improve. With regards to checking your eyes....I get a regular once a year eye test to ensure that no damage is being done by the hydroxy. This is worth doing to keep an eye on things (pardon the pun). Mostly don't worry about the word mild (Allegedly mine must be mild as it has not gone to any organs as yet) and mild is still debilitating. I think consultants are used to how they speak to others in the medical profession and may forget that we don't understand their jargon. Another thing to ask for at your next rheumatology appointment is whether you have a telephone contact for a rheumatology nurse if you have a problem (flare up etc). The thing with lupus is you know your body and don't feel that you have to say you are not in pain to appease anyone....if you are in pain/or have worsening symptoms then do tell your GP/rheumatologists (keep a diary of symptoms to discuss at appointments). Do find out what support your rheumatologist can offer....eg pain clinic, telephone contact for inbetween appointments, counselling (if needed), physiotherapy if needed. The thing you learn with this is you need to sometimes push for what you need at first. I feel I have had to find out everything myself in the beginning.....and then as I learnt more what my body needed I would either ask the GP, rheumatologist or contact Lupus UK (become a member) and see where your local lupus support group is as there should be one near to you. Hope all goes well. xx

  • Thank you so much for this advise I'm very grateful!!! I will take your advice and use it!!!!! I just need to find my confidence again!!! Diagnosis has help at little now i can focus on what i need, expect and want!!! Thank you so much x

  • hi mstr, can u clarify about the St Thomas website as i had a look & could only find a list of their own consultants- is there a list of reputable rhematologists @ other hospitals? if so where did u find it?

    thanks

    sx

  • Hi Sheila....Yes you just type into Google.....Uk Lupus specialists and one of the links will be called Find a Specialist St Thomas' Lupus Trust. They give you a list for the whole country. Good luck and sorry I did not make it a little clearer before xx

  • Hi Vonnie80

    I cannot say strongly enough, YOU ARE NOT ALONE. The folks on this site are so supportive and knowledgeable they will get you through the dark days so don't panic, there are times we all feel the desperate need of some support and you will find it here. I can only comment on my experience of SLE, discoid, sjorgens and reynaulds with major organ involvement. Bearing in mind everyone reacts differently to various drugs, hydroxy after seven or eight months of trying simply didn't work for me so finished up on a different maintenance drug, so there are choices available to you. My diagnosis started with breathing problems many years ago but only resulted in diagnosis two and a half years ago, many folks here can trace symptoms back more than a decade but went undiagnosed. Insofar as 'mild' is concerned, only a doctor that does not suffer from Lupus could possibly use this word.

    You have my admiration for being able to cope with a new born, keep at it girl!!

    Over time, you may find as I do, the main problem is that you look so well, folk that do not know you closely will think that you are well, when in fact you feel awful. Smile sweetly and agree with them, it's the only way to keep the blood pressure down!

    I wish you well and send a hug

  • Thank you for this!!!

    Im so glad to know at last im not alone in feeling like this!!! Now that i have a dx i can see that i can trace this back many years!!!! At 12 i developed a butterfly rash and my lips swelled very badly with mouth ulcers my bloods kept coming back with no explanation!!!! Then i had some bowel problems on top of that!! They ened up telling my parents that i had colitis!!!! Yet there was never any proper test for it as my mum thought i was to young!!!!! They could never pin point it!!!! I had constant allergy tests each coming back clear!!!! When i see my symptons now i actually see the similarities as does my mum!!!! I guess they were never looking for lupus in me especially as i was so young!!!!! It just so happens that i explained my previous symptons and my GP went back over my medical records to check them!!! I have had constant throat swelling over the years with all tests for infection coming back clear!!!! Thankfully my GP did a little research on my medical history and put in for an emergancy appointment!!! She never explained exactly what she thought as she didnt want to frighten me!!!! It took me several Gps over two years to finally have one who listened!!!! Thanks for this x

  • Hi there. I really relate to your post. I have been unwell for years, with symptom after symptom and each time I went to the GP I was just given more pills to pop. He never looked at the combination of problems for me. So when I finally got diagnosed with lupus and APS I was relieved because it meant all these problems were down to two causes. Then I got angry because no proper investigation had been done in all those years and I was gradually becoming more ill. Then I feel like I am exaggerating (I am not). Now I am frustrated as 7 months post diagnosis the SLE remains untreated, but at least the APS is being monitored. I am looking forward to getting medicated for SLE and hope I may start to feel more human soon as life is becoming a real struggle for me. This wretched illness almost cost me my marriage :-(. Despite telling husband I was ill for years, without a diagnosis or treatment he convinced himself I'd just gone off him. Bad times. Unfortunately due to work he is still unable to see the consultants with me but the dx helps him see I am not sulking or sick of him when I need a day in bed. No wonder depression is common with SLE eh? But this great website tells me we are not alone :-)

  • Thanks for this Bonnie!!!

    Men at times cant understand!!!! Sometimes i would think my partner thought i was just being lazy!!! Its very hard to engage in a physical relationship i totally understand that!!! When we sat down and talked he was understanding and a lot of the fear I think was in my head!!!! Yet I cant help at times have a little doubt!!! I am quite an emotional person and cud very easily slip in to a dark depression so im trying my best to stay as upbeat as i can but yrs it is hard!!! The added parinoia doesnt help either and all my over thinking!!! Im so graeful to finally know that im not alone in this!! Thank you x

  • I was diagnosed with "lupus" 15 yrs ago. The "mild" diagnosis refers to your condition not your symptoms or how you feel. You sought help because what you were going through was real and that won't change. Yes, in a sense we are lucky, we don't suffer to the degree that others do. Don't however allow anyone to use that as an excuse to play down your condition. We are all different, and we all cope with pain and stress in our own way. Lupus in any form, mild or severe is a very hard and unpleasant illness. All I can say is, get to know your own body and what you can and can't do. Learn when you need to rest and make the most of the times you don't. Let your partner read some of the posts on here and he will see how hard it is for you. Most of all, never feel guilty about yourself, you can't help the fact that you have lupus and remind the people close to youthat, however mild, you were diagnosed with something very real. Give yourself a break and take care x

  • Thank you for this very enpowering advice!!!! Im now going to learn to lusten to my own body!!! Im going to try to put the guilt away!!! Thank you x

  • Hi Vonnie80,

    Welcome to the community. It looks like everyone has been giving you great advice and support already. We really do have a great bunch on here.

    I just wanted to add that we have a free information pack about lupus. Since your consultant didn't offer you much, you may find it helpful. If you'd like me to send you one, please send me a private message or email paul@lupusuk.org.uk with your name and address.

    We also have support groups around the country and volunteer contacts who are happy to chat on the phone. If you'd like me to give you more information about support available near you, please let me know.

    If you need anything, just give me a shout :)

  • Rather than take this as a bare-faced insult Vonnie, I believe your consultant meant your lupus isn't life-threatening ATM but didn't phrase it at all well. I can imagine how you must have felt. Of course you will have been in considerable if not unbearable pain for some time and we with SLE all know that! Anti-malarials are the first drugs they always try. Must say they worked really well for me for pain and fevers but after 6 weeks I became severely jaundiced and had to stop taking them. Yes, they can affect one's eyesight ... what you say is quite correct. I would get an eye test now and have one every six months or more if your optician thinks it necessary. Sadly, in my long experience of battling this wretched dsease, I would have to say don't rely on NHS consultants to entirely manage your condition because, in my experience, they simply no longer have enough time. These days everyone needs to take some degree of responsibility for their own health and to discover the dangers the drugs we're given. After all, there's usually an explanatory leaflet in every box. Hardly ideal but stark reality these days. x

  • hello me again, did you see your doctor today? did he/she help ease your worries? x

  • Vonnie80, your story is similar to mine. Slowly not feeling well, getting more fatigued and then the pain. I had such burning pain in my joints ( I was seeing a neurologist as he believed I had sjogrens) but a month later my rheumy told me he thought it was more lupus! I was like what the heck- how can this be and what is it? Like you I was sent away and told to read up about it on arthritis research UK. I did see a specialist nurse re starting the hydroxy which I have been on now since last April. It did immediately help with the burning joint paint and the fatigue ( I was no longer falling asleep every night on the sofa at 8pm). I would say after 6 months it kicked in as I was able to tidy the house a bit more, do the dishes clean the bathroom. But I have had to cut down to a four day week and still am not able to run around like a regular person. I am only 34 and its hard explaining how you are too tired or don't have the get up and go like others. I was quite breathless and was having chest pains, I've had all this checked out and apparently I am fine and have no serious organ involvement. My kidneys are not functioning to their full capacity but I find taking the hydroxy has definitely made a difference. I hope you experience the same too when you start it ( after getting your eyes tested first- which i had to organise myself too) Good luck and best wishes!

  • I'm on same meds I also take morphine gagapentin and paracetamol and still in pain I was given eye test when started meds x

  • Hi Vonnie80

    I was recently put on a high dose of steroids and its only now that I can fully appreciate how bad I was feeling. Because the pain and the fatigue sets in slowly I it was my new normal, I couldn't remember not feeling pain when i moved or not feeling tired.

    Your feelings are your feelings and they are valid.

    I know how it feels to question your self and think all the pain is in your head but guess what?

    It isn't

  • Hello Everyone,

    Just read all your help and advice to Vonnie80. I hope you found it helpful Vonnie because I have.

    I was diagnosed 3 weeks ago, put on Hydroxychloroquine & vit D Tablets, and given lots of info but most important told to look at Lupus Uk site. Ive been very lucky to have a fab GP and Rhuemy but also found this site very helpful. I have been taking one day at a time so far and it seems to be working !!!

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