I have SLE and a lupus like condition , plus Raynauds, arthuritus, fibromialgia, chronic fatigue how much more can i be diagnoised with?

I have SLE and a lupus like condition , plus Raynauds, arthuritus, fibromialgia, chronic fatigue how much more can i be diagnoised with?

Did it take others years to be diagnosed? why does it take so long? we spend many years feeling ill and once we get a diagnoises we are basically told when we have a flaire up it will be dealt with at the time!!! i have my dna which is moving and all these deseases seem to cross over with symptoms, making it hard at times to say which illness is causing the problem. I hate this chronic fatigue too..does anyone else out there have multiple deseases? and if so how does that make ya feel?

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  • Hi it seems to take years/what seems like forever to be diagnosed. I too have several 'chronic diseases' Raynauds, chronic fatigue, thyroid, SLE. sygroens, inflammatory arthritis,IBS and the list goes on, Each time they tell me something else I just say I cant possibly have out else wrong with me, are you sure you haven't taken several patient results and mixed them with mine, at the same time knowing its rue cause the way I feel. All I seem to do is go from 1 hospital/Gp appt to another just to be told I have something else wrong. We just have to hope someone finds a cure and soon, keep smiling and do what we can when we can

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  • I is so true to form that it takes forever to be diagnosed I've had lupus all my life yet it was nearly 9years after the birth of my second child thati got a diagnosis . I was 34 then and I am now 62 We are all different but yes we have and do get multiple illnesses that wear us down All I can say to you is that you must become selfish with your energy and the times you feel good Try not to have negative people around you who zap your strengths and don't allow stress to be in your life it only exacerbates all your ailments. Now this was a big help to me and I have stuck to it now for nearly 30 yrs I went on a detox diet then slowly introduced foods to find which ones triggered off extreme pain and lethargy . I don't eat red meat now , I am gluten free , oranges .tomatoes and pineapples also incite pain if I was to take for example more than one tomatoe in a while Unfortunately my system went haywire and I took an allergic reaction to benzoates sulphites salicyates and amines also I became lactose intolerant any foods with these in it had me look like Madge out of the Simpsons or Botox gone wrong but three years later and I can tolerate most things in very small quantities One has to laugh or go gaga I truly believe that keeping an eye on what food we eat does help. I know you are overwhelmed with all these diseases and traipsing to hospitals specialists etc is also exhausting It has taken me a long time to accept my limitations but again be true to yourself and ask for help from your family Question whether If I use my strength and e ergo to do X will I have enough left to do Y and then choose which one you would rather do its your life make sure you enjoy what you are doing I wish you well and hope some of this may be a help Be Positive x

  • nice... take care...

    smile for hope and strength..

    eva

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  • tez,it can be common for overlap diseases,it took me 16yrs to get a lupus diagnoses,had M.E/chronic fatigue raynauds ,fibro,sjogrens,mctd ,and now lupus.am also having tests to rule out M,S as my mum sufferd M,S badly .It can be very frustrating having so many issues,i try and see the disease as a whole rather than individually,we cant beat them but we can try to manage them as best we can ,talk with your G.P take your meds (if there helping?)and try to a holistic approach to managing your health,keep well brave;)

  • hi, i know exactly what you mean

    it got to the stage where i thought i am not going to the appointment

    as i dont want anything else, but i would go and they would say oh you have fibroymalgia

    now i would just say yep that would be it lol.

    i have many lupus sjogens sclerodema raynulds blar blah

    the way i deal with it, is if i looked for a job it would look good on a c/v. :)

    the doctors can bring it on as now nothing surprizes me,

    in the past 3 months i have had a blood clot on the lung and a stroke

    because of everything else i was not bovvered by them.

    i am not super human or anything i just learnt to put up with it all

    it cant be changed so i dont stress as i find its wasted energy.

    ps before all the other illness came up and i just had lupus i would be back and forth

    at the docs and he would say its the lupus,

    it got to the stage that if my head would have fell off and i carried it in

    he would have said its the lupus.

    keep your chin up and find something to laugh at everyday it helps. xx

  • nice. smile for hope and strength;;

    take care,too

    eva

  • thanx xx

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  • I was undiagnosed for 38 years! Now that I know what a flare is and how it feels, I can pinpoint my first flare to the summer when I was 13. (1965). My parents called it sun poisoning. Over decades, I presented at doctors' offices and emergency rooms many times. Each time I was told that I had a virus of some sort, that I was working too hard, and that I needed to stay home for 10 days and take massive amounts of ibuprofen.

    As a single mom, 10 days off was not an option. I usually had 3 jobs none of which had paid time off. With two young sons, I reserved time off for when they were sick. I just soldiered on when I was sick. By 1985, I simply stopped looking for solutions.

    In 2003, I was sick enough to be taken to the hospital by amublance. I was there for 14 days with kidney failure, congestive heart failure, bone marrow failure and cerebritis. This is when I finally got a diagnosis. I was sick enough to end up on disability for 4 years. In 2007, at the age of 56, I returned to work. I managed to arrange things so that I worked every other day and rested all day on the off days. My lupus continued to loose its hold over me. At this point, as I approach the 10 year anniversary of my diagnosis, I feel better than I ever have in my life. I take my meds (Cellcept and Plaquenil) faithfully and work hard at self-management. I do have Raynaud's in overlap. Autoimmune diseases always bring their friends and relatives when they come to visit.

    Wishing you all the best.

    Linda

    copingwithchronicillness.bl...

  • your an inspiration xx

  • I too, waited years for a Lupus diagnosis. I believe that if I were a man I would have been diagnosed sooner. When dealing with female patients, a lot of doctors attribute Lupus symptoms to emotional stress and working too hard. With a pat on the head, the female patient is told to "take it easy" and is sent home. It was not until I was hospitalized with a high fever and skin liesions from head to toe that I was properly diagnosed. And then, as you know, the fun really begins! A roller coaster ride of (what I like to call) sub-diseases. None are curable, some are contollable and all are so inter-related you can't even begin to guess which disease is causing what symptom.

    Physically, I haven't experienced one day, a full 24 hours without some sort of pain and/or fatigue. However, this wretched, insidious, horrific disease has had the positive effect of helping me to prioritize my life. I save my energy for the important things and I don't sweat the small stuff. I have learned not to worry about things that may happen. I now know who I really want in my life and who are just energy vampires. I don't feel any guilt about taking time for myself and have learned to appreciate the smaller pleasures in life. On my occasional outings with friends and family, I am the outgoing, fun one because I don't know when I'll be up for another outing and want to make the most of it. I no longer get drawn into silly arguments or hold grudges - the stress isn't worth it. Because I've had to learn to be patient with myself, I am a lot more patient with others. Because of Lupus, my world has become a lot smaller, but my place in it, a lot happier.

    I wish us all the best possible life we can manage and that our good days outnumber our bad ones.

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  • Crickey! I was going to leave a message this morning when I first read it but did,nt. have the energy to concentrate (and I'd only just got up!) having read all your answers you have received tez i don't have anything to add, just to reiterate really. Yes it takes years to diagnose etc but you have to be brave, try and do what you can when you can without feeling guilty, keep the stress at bay whenever you can. That's it really. I too wish us all well And plenty of good days with understanding and love from those around you, don't be afraid to share it they don't know otherwise.

    Happiness to you all x

  • thanks talula

  • what fantastic feedback for you tez!!!!some amazing words have been left for you,i have battled hard and finally am feeling proud of myself for starting to realise whats important and really try not to stress!lupus and overlaps are mean mean diseases ,however i reckon we get given these as a warning to change????im really trying to change ,i hope you find harmony?keep well all ,brave ;)

  • Yes, once SLE dianosed, lots of sub-diagnoses came along.

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