DIAGNOSED WITH SLE AND RAYNAUDS PHENOMENON

hi all. i saw the specialist today and she diagnosed me with all of above. i had bloodwork done 4 months ago. i had severe pain in my hands, well now alot more is in pain but diagnosis was confirmed today. dr talked, i cried and my poor hubby went as pale as her white walls. the specialist said ive got a very severe case of sle, and asked why i never got tested before seeing that its already in a very advanced stage. im all in the dark here and dont know what to expect. my liver, hands, arms, legs and bloodvessels are being attacked very badly. ive never felt so alone in my life. i was given a pamflet on sle and voila thats it. she talked for 2 hours but after the words "severe advanced stage" and "very progressive treatment a.s.a.p" i stopped hearing anything. so many do's and dont's. ive read alot on your blogs and it helps. i just want to konw i start my meds 2morrow, will i ever be able to drive my car again?

10 Replies

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  • Hi Hester, firstly massive (((((hugs)))))

    What a scary horrible appointment and you must feel like you have been hit by a bus.

    Did the hospital give you a specialist nurse helpline? If they didn't, then write down any questions and phone the rheumys line and ask for someone to call you to discuss your questions. A helpline to your specialist will really help, so if tthey didn't give you one then call asap and ask if the dept has one.

    Whether you can drive your car or not depends on how your mobility has been affected, and maybe also any side effects of the drugs. You could always discuss this with your normal gp too.

    Have you and your husband got a good support network around you? Friends and family can help you process the diagnosis. Also these boards, phonelines etc can help. There are also support groups over the uk too, and I have found meeting other 'lupies' helped.

    Again, massive hugs, you will get through this, just take it easy xxx

  • thank you so much for your reply. and your hugs meant more 2 me than youll ever know. unfortunatley we have no support sistem close by. i havent talked to my parents in 4 months and i would die rather before i allow them back into my life. my sister and husband with their 3 kids live not to far but shes a pastor and dnt want to face reallity. my cousin as some kind of arthritis and acording to my side of the family its the worst kind and im just faking the pain for attention. my husband cries in his sleep and im trying to be strong. i just want to crawl into a hole and stat there. my twins of 8 suffers just as much. ive had a very sharp stabbing pain in my chest for the past 2 weeks but was so shocked i didnt think to mention it to my rheumi. my heart has a hole in it as it is and my hubby is stressing enough. i just kept quiet. its so helpfull to talk to someone that going thru the same. ive tried to search for lupus people in south africa but they either keep quiet or they feel like me. you are truly a Godsend. a thousend hugs right back for you.

  • You are not alone Hester. LupusUK is here with members who support and understand. Survivors of lupus are here to help you throughout your journey.

    Try to find comfort in your diagnosis. Now you and your doctor/s can proceed forward with a treatment plan - find solutions to your specific symptoms through medication - self management techniques - tricks to avoiding flare ups - identify and avoid triggers - maintaining mobility - etc.

    You have a husband and twins who love you. Love them back tenfold. Share, care, and communicate to lessen everyone's fears. No denial. Through acceptance, understanding, and compassion you all can endure.

    LupusUK has a series of informational videos for patients and patients loved ones. You might wish to watch those together as a family. The more informed you are the more confident and proactive a patient you can be.

    Remember : it's not over until it's over. May you survive and thrive.

  • Hi Hester, more hugs to you from Canada!!!

    I am so sad for you, but totally understand!! The initial diagnosis is very hard to deal with!!! I was 19. I am now 38. The beginning is so very hard. Once you get medicated, it will be a bit more of a turmoil as you don't know what awful symptoms and pains are from the meds and what are from the disease. it seems like a cycle that has no end. It is so stressful and worrisome. it's so hard not to be concerned about what other people think (like your sister or others who you think are in denial or don't care). I have found that most people are uncomfortable with illness. They don't know what to say or do, so they do and say nothing. I felt cut off by ppl and thought they didn't care, but found out years later that they were scared. I don't get it and never will, but I have to try to be understanding of them.

    When I'm sick, i feel like the world is crashing in. That stress is really not good for the illness!!! i have had chemo, was on prednisone (yuck!!) for 10 years, have been on imuran, and am currently on blood thinners, hypertension meds, diuretics, and anti depressants (that one is only within the last 4 years and was a God send).

    You are so blessed if you have a husband who is understanding. When you are sick, seek out other people with lupus (like us) because perhaps you will only be disappointed by your friends and people around you. I'm sorry your parents are not of help to you! I know all too well the crazy racing thoughts that you go through when you are sick!! Vent on here!!! There are people on here to listen and who have been there!!

    you will get things under control sooner or later. Then you will find that you will feel so much better. There is hope. I will pray for you, Hester!!

    Sincerely, Heather

  • dearest nouska and heather. thank you so much for your response. ai the only thing i seem to do is cry. i irretate myself. im a a strong believer in Jesus Christ but since yesterday after reflecting what ive been thru in the last ten years to name a few has shot my faith alot. i had to watch my first born son die after living 2 weeks, strangely i was pregnant again at my 6 weeks check up with my now living twins, a boy yancu and a girl yanica. they are 8 now. while i was pregnant with them i got bells paulsey which left my left side of my face paralised. i never thought something could be so painfull. the destruction it left after it healed was and still is noticable. my left eye dont close properly and when im stressed my mouth mess when i drink something. and know the lupus. i wish i can take away my husbands hurt for having to see me go thru this. he wants to be everywhere and help with everything. we are so young and have so many dreams but after yesterday everything changed. a while ago i wrote my lifes testimony and its quite something, i couldnt beleive ive been thru so much in my life. please i dnt seek a pitty party cause there are people out there thats of much worse than me i know. some say the disease is hereditary and others say it isnt. whats the truth? today is a bad day again, my right arm and legs are killing me. i only start my meds tomorrow. i feel i want to hide in the pharmacy and heal myself on all those drugs. lol. its is a true comfort that there are people out there whom i can talk to. lots of love from south africa. mwa

  • Hi Hester, I'm so sorry that you have had such a hard time, especially loosing your first born. I too have twins (now 13). I have a milder form of SLE to you (no organ involvement), but I still know the struggle you go through and the impact is has on my husband and kids. I also lost my faith when I got the diagnosis: I had believed that I was being healed of ME and making a recovery and then BAMM! Lupus! I felt the rug had been pulled from under me and I felt dizzy as my world view collapsed. It's taken a long while to come to terms with the diagnosis and what it means for the future, but having this site to chat on makes things easier -feeling alone is the worst thing. I also noticed who were my true friends and stuck by me.

    I just started steroids for the first time today and I'm not feeling too bad -just a little nauseous at first, I am looking forward to them working and being in less pain! here's to a better future xx

    ((hugs))

  • Hi again!

    I, too, am a Christian but only came to Christ 9 years after I was diagnosed. I became a Christian hater at 15 and when I was diagnosed with lupus, I thought of course there is no God... whaat kind of God would do that!!!

    However, I do have a habit now of looking at the positive side of things. Often the positive comes after the storm though... for instance, I would never give up what I went through (and there is a heck of a lot!!!); I believe that because of what I have been through I have a tremendous amount of compassion for so many people.

    I now have compassion for couples who have been through a miscarriage, for couples who have had preemies, for people who lose their memory, for people who have to learn how to walk all over again, for people who go through drug withdrawal, for people who just get diagnosed with a disease, for people who have mental breakdowns, who have massive social injustices, for people who suffer deaths of close family and friends and loves, the list goes on.

    I love this life... because it is so momentary until we get to our true home in Heaven!!! I try to be happy through suffering.... ok, I am not!!! But hindsight will be 20/20 when you get through this!

    With all you have been through, you have so much to offer other people! Remember, we were built for sharing! I believe there's a purpose for everything! Right now it sounds like you need support from people like us and your hubby sounds amazing. You will get through this, there is a light at the end of the tunnel!!!

    hugs across the world!!!

  • Hi Hester

    I have lupus too. Darling if you want you can join to a group I'm in this group , it is a nice group for Lupues it is fantastic, Ive joined few months ago, the people is fantastic

    This group is in Facebook call Lupus is real!!!

    If you want to talk about anything we are there to help you through

    Have a good night !!

    Lily xx

  • thanx liliana. i have joined. i am really down in the cumps today. its killing me to see what this is doing to my husband. he is to afraid to hug me but still do ever so gently. whats the time there by you now? here by me its 12h30 in the night.

  • Hi Hester

    I live in London, and today is 30th June at the moment is 12:02 pm

    As I told you before in this group we have members from everywhere, just join give it the try. I'm In this group, they help me a lot. I'm there as Lily

    Remember Lupus is real!! Type like that Lupus is real!! In Facebook

    Hope to see you there Hester

    Remember you are not along

    We are many more sharing the same illness

    Take care hunny!!

    Xx

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