Hi my names Di, I was diagnosed with lupus few months ago after having aches n pains , clots of lungs , bad asthma , tiredness and lots other symptoms for over 4 years but finally saw a decent doc at my surgery who referred me for more tests , I have been on hydrochlorine and vitamind for just over month and can still hardly get thro the day so have just had another steroid injection to see me thro until medication stArts to work , I'm due to go in hospital Tuesday for gall bladder removed so got it all going on , I'm 50 female by the way , I wud like to share with different people n compare notes as feel I'm all alone cause no one only docs know what I'm talking about , thank u Di x

34 Replies

  • Welcome Di.

    Best thing you could have done. You are not alone. All your concerns resonate with us on here. As people read your post I am sure someone with post to compare notes.

    Sorry you are still in limbo despite your diagnosis. Congratulations on finding a good doctor. We share your disbelief that it took so long to be referred and to be diagnosed. Lots of people have waited up to 20years before diagnosis.

    Lupus uk has lots of literature on many topics, from educating you on your own illness, to employers' leaflets to explain your illness, to leaflets explaining your condition to family and friends. Please go onto main site and ask for the leaflets.

    We range in age from teens to grandparents and from this country to around the world.

    The fatigue you are experiencing is a major factor in Lupus. It will take time to adjust to a slower pace as it takes time to let the meds take effect.

    Best wishes to you as you learn more about your complex illness. Please post as often as you wish, and read the posts too because you will pick up a lot of tips and lots of support here.

    I repeat you are not alone.

    I will be watching for your name as you post, etc

    Take great care and try not to get too stressed as that will not help. There is a lot to take in. I sympathise, I too found it a lot to absorb everything, but on here you will soon find help and support as I did.




  • Thank u for taking the time to reply , means a lot x

  • Hi Di sorry to hear you still feel unwell . I too was only diagnosed about 3 weeks ago and started Meds but still feel very fatigued achy and an emotional wreck . I understand how you feel I feel lost and struggling to come to terms with the diagnosis . I work full time and I have had to go in the sick as it literally takes me all my energy to get up and get dressed . I am finding the info people put in here and lupus UK very helpful and I also messages some called lupus and me on FB ( logo is a blue eye ) and she was great have me some lovely helpful advice . Good luck I hope you feel better soon keep in touch x

  • Hi , I'm the same keep having days off as in so much pain and the rash on my face isn't making my confidence any better , where bouts do u live ? X

  • Hi Di I live in the North East of UK what about you ?

  • I live in Norfolk and I'm 50 feeling more like 90 lol

  • I am 45 and like you feel more like 90 - but I guess we have both had a recent diagnosis and I'm trying to stay positive that this is early days . What Meds are you on ?

  • I'm on vitamin d and hydrochlorine and had my 2nd steroid injection yesterday as can't cope with muscle pain no more x

  • Di I'm on hydroxy 200 per day thinking of starting prednisolone in a few weeks ahhh ! But had 4 steroid injections in my bum over the last fortnight and that's has helped control my pain - ask for another injection ! I also take naproxen twice a day if I try to miss it I'm still in a lot of pain - I take oneprazole as well for reflux . Bit worried this week have to go and see a haematologist high protein in blood and high IGG immunoglobulin ?? Cause praying to god they don't find anything else falling to bits x

  • I'm on wRfarin to as I had clots on lungs 4 year ago and I also on lanzopaze for stomach problems as well

    As high blood pressure tabs and goin into hospital Tuesday to have gall bladder out so now have to stop warfarin til after op x

  • good luck with your operation on Tuesday .i hope it all goes well and you make a speedy recovery

  • Hello.

    My diagnoses took 6 years after i found relief with steroid injections. I was then put on hydroxychloroquine last sept and im not sure i can say i felt much improvement. However dont be put off, i know lots of peeps on here who have benefitted massively. Im now on different drugs which are working. As well as hydroxy. So there are other things if the hydroxy doesn't do much. I hope your up coming op goes well.

  • Thank you, was just wondering how many steroid injections ur aloud to have this is my 2nd one I had today x

  • Ive had 3 in approx

  • Sorry lol, ive had 3 in approx 12 months. They are relunctant to give me any more so im thinking thats about the limit. They are not long term solutions and will become less effective everytime you have one. Its a shame cos they are marvellous at killing my pain!!

  • Hi Diane

    Welcome to the Forum which I'm sure will give you lots of help. Having a diagnosis of Lupus can take a while to adjust to so be kind to yourself. Good luck with gallbladder op, let us know how you get on and I hope you feel better with the steroid injection kicking in. X

  • Hi Di, as you can see from all the replies, you will NEVEVR be alone here. My 'lupy' friends have got me through on many occasions!

    You will probably have been told that hydroxychloroquine can take some months to work, so don't give up on it just yet. And remember it is entry level treatment, so there are other treatments if it doesn't work for you.

    Good luck and keep pushing through!


  • Thank u Sarah x

  • Hi Di, I am currently in the process of being diagnosed. My symptoms started more than 20 years and it was only last July I was first referred to a rheumatologist. Had appointments with other specialists which didn't go well. Even then it took 15 years of going to my GP before any referrals were done.

    Was accused of self harm and it being all in my mind at one. The others basically said don't know what's wrong and discharged me. Managed to persuade one to refer me to a rheumatologist before he discharged me. It was only when I changed my GP I really started to get the help I needed. All these years I thought my GP was helping me. It was him who suggested a 'fresh pair of eyes' and it is the best thing I could have done.

    I had had my first rheumatology appointment with a registrar before changing my GP and it did go well. I was sent for tests and appointments with other specialists. My next appointment arrived and it was with a different registrar as the first one had moved on. My new GP got on the phone and got my appointment changed so it was with the consultant. He wants me to have continuity of care and not be seeing a different registrar every 6 months. He is also seeing me every 3 weeks to 'keep an eye on you.' Second rheumatology appointment went really well. It was my rheumatologist who brought up seronegative lupus and that he thinks that I am one of the 2% of people who has this. I have the symptoms but negative bloods. Before giving a definite diagnosis he referred me for a capilaroscopyIt, which came back positive, and pulmonary tests, which I am getting on Tuesday. For now he has given me a diagnosis of connective tissue disease and put me on Hydroxychloroquine. Have another appointment for November. With my GP seeing me every three weeks he can arrange for me to go back sooner if he feels I need to.

    I was told by my rheumatologist it can take months for the Hydroxychloroquine to work, hence the months between appointments. I now realise though that there are doctors out there who are willing to listen and not just go along with the obvious. I hope all goes well with your op and you start feeling the effects of the Hydroxychloroquine soon. Take care


  • Omg ur story sounds horrendous. All that messing about , I actually saw a different gp than my normal one and he referred me to hospital for further tests but over last 4 years I kept having blood test come back as high inflammatory markets but they did nothing just left it x but glad I have finally got a diagnosis x

  • sounds like what ive been though...took 20 years..all my 20s had really bad chest pains,,,,,,,,was bad..not one gp took notice..said too young ....i am 39..only last year got told have same thing....on theses meds dong nothing...got a got rumo..going tuesday....month late...my ribbs are swollen...feel ill..just sarted a new job.....ive 2 austisc boys and not copeing..my face swells..goes red..my gp now great...she said last week..other last few weeks she can see me getting worse........///////xxxxxive gone from a 10 to a 14 in few months,,,,,dont eat much,,,not doing good sorry

  • Hello Di

    you will nolonger feel alone bcos everyone here understands the bagage of lupus. I was diagosed in 2011 but started treatment in 2012 after my baby came. It felt like a roller coaster ride at first and people here comforted me. I still feel like asking my Dr when will i feel better but they dont have the answers so i take one day at a time but i still loose my patients and beat myself up. So my dear ur not alone we are here for u nothing is strange for us here. I have gotten many clarifications and information from this group so stick with us here.



  • I am so glad I joined , I have 18 year old daughter who lives with me but doesn't give me no help or support round house and find it a real struggle to keep up , I work part time as a teaching assistant buy that is enuff at min so can just manage that , and I do love my job x

  • It is so unfortunate that ur daughter is not helping. I am 29 and my mum is 55 and she is amazing. She takes care of me and my 3year old son. She is not working at the moment bcoz my dependency on her has increased my mobility is not as good as it used to. I know u love ur job but if ur illness is getting worse and ur not coping u might consider DLA. Remember lupus has an enemy called stress. Please dnt worry about ur daughter she will be helpful soon. She is a teenager now but time will come when she will take good care of u. It might be a good idea to educate her about the illness. If you pray put ur illness, work, daughter in God's hand and u will be fine. I will also pray that u find comfort and ur daughter will be more helpful. You should try not to be a super mum ask her for help and dnt assume that she should know u need help. Ask ! Hugs dear


  • Thank u and u so young to have this ,u situation is nothing compared to u x take care chat soon x

  • There you go Di. Did I tell the truth? JL1w is in a similar position and is coming to terms with this condition. You will be supported and helped here as I said.

    Very best wishes to you for your op.

    All your friends will be awaiting your next post to tell us how the op went.

    Hugs from us all



  • Hi Di, I was diagnosed in December after many years of symtoms and worsening Raynauds amongst other things. You will find a lot of support here. I too have felt alone especially since my consultant isn't the most interested in what is going on for me and I got knocked off the clinic list as his secretary thought he was reviewing me elsewhere. Thanks to this forum I have felt less alone and have made a very dear friend after posting on here.

    No consolation but I have a 17yr old daughter who also doesn't help and is very unsupportive. In fact she told me not so long ago that my illness was annoying to her..I couldn't believe she had said that to me when I had been trying to keep everything together and look after my other 2 children as well. Teens in particular are extremely self centred and egocentric. Thankfully my very healthy mum helps me enormously.

    Keep popping back and let us know how you are getting on. Take care x

  • My daughter told me I was putting it on lol so how old are u and do u live alone then

  • Took years for me to be diagnosed as with so many of us so we understand how you feel. I've had lupus for over thirty years now and believe me when I say information is power this site will help and you'll get understanding as well. Good luck with your op keep us posted, high hugs

  • Thank u so much , am getting bit nervous now x

  • Hi had op n all went well but in lots pain still n can't sleep but suppose will get better x

  • So good to hear that the op is done and went well. Things can only improve now, even if you're not sleeping do try and get lots of rest as this will help you not only to get over the op but with lupus as well.

    Thinking of you I know it's hard but try to keep your spirits up


  • I too,was diagnosed with Lupus after the fibro diagnosis years prior.I am on Plaquenil 400 mgs per day.It took a long time to kick in...about 7 months.I also take the vitamin d.I have severe joint pain,especially in my hands,fingers and feet,nevermind all the other places.My hands/feet are the most bothersome.When the Plaquenil finally kicked in it is finally helping in this area.No matter what I do,I can't seem to sleep more than 5 to 6 hours.As we all know,sleep is so very important. This is my problem now..getting enough sleep so that I can feel better..that my body gets the rest it so needs.I don't take a sleeping tablet.I am getting very depressed due to my illnesses. I think I have Raynards, too,as my hands turn purple from the cold,but haven't yet been told I have it.I am not on an anti depressant. I am though,depressed from all my illnesses, and will ask my Dr when I see him soon if I need one.I hear from other people on this site with Lupus,etc. they are and it helps them in many ways,and to get a good nights sleep.The fatigue I know comes with having Lupus,but my lack of good restorative sleep just adds big time to it.Do you have any rashes on your body?I have a big purple mottling one on my right thigh.I have lost a lot of hair,too.Don't know if it's the Lupus or the Plaquenil. By reading this site,many have this problem.I also loss a lot of weight.20 pounds.I changed my diet,no milk,gluten and other foods that make me feel badly.I have an appetite, I just cut out sugar and processed foods,and eat healthy.My Dr recommended a protein drink like Ensure to put some weight on.It is just as hard to gain as it is to lose weight.This weight loss I also read is Lupus thing with some people. We are all so dif how the disease manifests in us.I used to be a go get person.Now I am not. I know my capabilities now.So far no major organ involvement. I did have pneumonia about 6 months ago,and my lungs was Ct scanned.They saw my lungs had something going on.My Dr said wait 3 months,and redo the scan.Luckily they decreased.Now my lungs,so far aren't a problem.I can't be around any smoke or irritant, as it does bother my lungs.Dr told me Lupus people sometimes get this in their lungs...part of having the disease.I can breath OK,no pain when I do.Just hope I don't get another chest infection.Wash hands always,and if someone I know is sick,I have to ,for my body's sake,stay away.So yes,I have both too.Diagnosed with fibro about 7 years ago,Lupus 2014 in May.

  • Hi,forgot this...many hugs !!

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