Another diagnosis!!

Went to my Consultant yesterday who now says I've got fibromyalgia as well as lupus - am a bit relieved as knew something else wasn't right and thought I was going mad!!!!

So,a change to the meds - lots of reading ahead of me.

Any advice from anyone on how to cope with the differences etc etc

Work not going well - am looking to give up as soon as I can when a job at home sorted.

How life changes quickly.

8 Replies

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  • Snap . This is my scenario too. I am still lost. If u want a hand bouncing about facts give me a shout

    hugs xx

  • Hello Senora

    It can seem like the combination of illnesses you get labelled with is down to who you see and which clinic you attend.

    I have mega cholesterol, but have only recently had this linked to my lupus, or should i say anti-phospholipid syndrome with lupus like symptoms + sjorgrens syndrome, ( oh no, its Sicca syndrome)

  • Hi there Senora - my sympathy goes out to you..... I loved my work (in a busy Pharmacy) but when the SLE really "kicked in" had to take early retirement. It was a major life-change, especially as I live in "sleepy hollow" and hadn't made many contacts with working full-time.

    Without my husband, I'm sure it would be a case of "shouting at the walls" - because during flare-ups, walking any distance is a no-no. This was almost 3 years ago - and gradually I've learnt to pace myself, and not plan too far ahead. There are some good days (lots, in fact) when I can almost forget about the SLE. I've taken up a new set of interests (not too physically demanding) including becoming better friends with the PC! I love my garden and pets (we have 3 cats) and there's more time to be with people we care about.

    One piece of advice - be assertive with GP/Consultants. They tend to treat us as "guinea pigs" because there is no definitive treatment for the Lupus symptoms. I was taking Methotextrate for about 5-6 months, and it made me MUCH worse, with swollen hot limbs and permanent nausea. This is not the case for everyone - but let the medics know if meds are helping or not.

  • Me too got lupus &fibro. Had lupus for over 30 years & after having kidney problems along with everything else needed a kidney transplant. My dad gave me his kidney sixteen years ago. Thankfully the kidney has been marvellous it's just everything else that comes along with the lupus & all the drugs. I'm sorry to hear you got both.i can't believe how painful fibromyalgia is. My whole body hurts. Even the clothes I'm wearing hurts me. It's horrible. I do find weather patterns affects me & when I get extremely tired & that's most of the time. What do you find makes yours worse ? Are taking any medication for it ?

    I've tried amitriptyline but couldn't tolerate them, I had too many side effects. I then had Lirica which were ok in the beginning but got used to me & now I'm on noritriptyline which are better as they don' have so many side effects.

    I wish you all the best Señora , I hope you are not suffering too much bless your heart

    Take care Hayley x

  • Hi all. I have lupus with all the usual symptoms, lethargy, fatigue, aches and pains, itchy permanent rashes and so on

    Just been told I am diabetic and have none alcoholic fatty liver disease. I also suffer from dry eyes with blurred vision and have an appointment soon at the lipids clinic. I have quite recently had to have my gall bladder out, unsure if this is connected.

    My memory is such that it causes me great distress. I only leave the house to make appointments because I am sensitive to ultra violet

    I have gone from a fit and able boddied person to a wreck in five short years and to top all that I feel that I am fighting a lost cause with the benefits system who to be quite frank hav'nt got a damn clue.

    Jeff

  • And snap from me as well!

    Saw my consultant on Thursday and he now thinks I may have fibromyalgia as well as lupus because my aches/pains/fatigue have got much worse over the last few months despite my dsDNA levels going down. Yesterday I started on a one-month course of steroids to see how much it helps my symptoms, but if it makes no difference then the fibro is a definite. I just cannot believe how much my life has changed in the last couple of years; now not working, can't plan on going out anywhere because I can never predict how I feel and I just feel so bad for my poor husband. He has to work and look after me and guilt is kicking in big time!

    Hope things get easier - do stay in touch,

    Love M. xx

  • Yes I ave SLE, FIBROMYALGIA AND S/S and I never know what is causing what. I am feeling very unwell at the moment but even though I have had two UTI in the last month my bloods were ok, so it must be one of the other. I get very short of breath and pain in my chest. No one has ever given me a reason for this just make me feel it isn't really happening . I don't know what advice to give you after 30 years these illnesses still confuse me. Good luck hope you are able to understand better than me.

  • Hi there i hav had lupus for 18 yrs and the last 5 yrs hav realy escilated, but the last year has been the worse, i new there was something differant going on other than lupus symptons, the severity of muscle weekness and plumited through the roof, and the fatige was just flooring me instantly, but i was continualy going to doc with severe pains in my chest, my neck n shoulders and my muscles from head to toe were so heavy n solid the pain was excrutiating at times, my muscles often go into spacms witch my parnter has witnessed on many occations were the whole muscle just tightens in spasms and it looks as if its sitting out side my body,sever buning feeling in all my limbs,and even the hair on my head is to painfull to touch, its such a horrible illness with little support at times, but if you keep looking you will find it, i personaly had to go private for my consultant was very dissmisive with me regarding fybrio, so i went private and after examination i was found to have all of the 18 triger points witch they use to diagnose this, so thankfully now between both consulatants i have had a change in treatment to, roboxan is the main one a mucle relaxer, this has helped but it doeasnt stop the flare ups, which i am just coming out of just now its bn a realy sever ten days, all i can suggest is warm baths as warm as u can take it, massages, i know that all sound pretty neg but there is good times too life does go on and we can fight this together talking with peeps whom understand me makes it so much easier, wot i hav discribed is me at my worse it isnt alwaz like that so i just take the good with the bad , i wish you well my friend keep on keeping on...

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