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Thread: Hello everyone i am new to your site :) xx

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    Default Hello everyone i am new to your site :) xx

    Hi i am Angel and live in the UK. This is my story.

    I was healthy, travelled the world on my own, went out dancing and socialising and had many friends. In 2004 i made 3 trips to Tunisia which was fab, but each time i was so sick, with i think food poisoning. The last trip i got Flu. I then got gum infections which were so painful and i felt so low and cried all the time. I carried on as normal, even though i felt so depressed and anxious, yet never really recovering from my ailments. Then in the summer of 2004 i was so exhausted i couldnt get out of bed and believed the world was coming to an end and for a few days couldnt walk or talk, just cry. I saw a UFO and my dog dissapeared right in front of my eyes. It sounds funny i know, but at the time i thought i was going mad. The Doctors first told me i had a nervous breakdown. I was off work a few weeks, but went back part time, knwing i felt so terribly ill and knowing i was losing my mind. In 2005 i was diagnosed with M.E.
    Last summer my asthma flared up to the point i was having up to 5 asthma attacks a day. I was and still am totally exhausted and so very depressed and anxious and have severe insomnia, but i have an nebuliser now which saves me so many times.
    Last month i asked my Doctor to help me as i felt i was just existing and not living anymore. People i worked with and friends have all gone now and i am totally alone. He sent me to see a top M.E consultant who took blood tests.I have not yet had the results, but he said i have got LUPUS. I asked how could he be sure when i have not had the blood results back, but he said i have, he knows by my medical history and he is an expert. He has given me a drug called Pregabalin to help with my headaches and joint pains and muscle pains. I will start it in January, as i am afraid cause it has some weird side effects e'g suicidal thoughts and stuff. My nurse will monitor my moods when i begin it. I have rashes, slightly on my face sometimes, but mega rashes on the tops of my arms, but they come and go. I just hope this new drug will make me sleep. I can go days without sleep, yet when i do sleep i have major nightmares. I had to stop going to work last December as i felt so ill. Unfortunately, my work collegues do not understand this illness, so have kept away from me.I did hear they had the works christmas do last week and they never invited me.I cried.
    I didnt ask for this illness and before i was so active and lived life to the full. Now aged 39 i am housebound with severe aches and pains, insomnia and panic attacks. Fingers crossed these new pills will help me!!
    Sorry ive gone on a bit lol.

    Love
    Angel.xxx

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    Default

    Hi Angel,

    Welcome to the site. I am also new to ther site, but I am sure that you will soon hear from some very knowledgeable people that will be able to offer you a lot of information. When searching for specific answers, I scroll down the various topics, find my topic, and read old postings. This has really helped me.

    Share a smile today,

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    Default

    Hi Angel,
    Welcome to the site. My name is Kathy. I have SLE Lupus and have had it most of my life. I will be 50 on the 17th of this month. I am wondering why your doctor has not put you on Plaquenil or any NSAIDs for the inflammation that comes with Lupus? This is a hard disease to deal with, but once they get the medicine that will work for you you should be able to manage pretty well. I hope that you keep posting.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Default hi

    Ah thank you for your replies. I will look at all the info. I think it maybe because i have been on Prednisolone on n off for a year for my asthma. Should i ask him that question? The Consultant said the new meds Pregabalin will help with the pain, aches and the insomnia. My joints do not swell though, so im not really sure why not.

    Love
    Angel.xx

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    Default

    Hi and welcome! I am also new and everyone has been an angel on here! You will always feel welcomed and everyone will do everything to help you and comfort you! Pick your head up, you are not alone and we will all be here for you through this difficult time! :angel:

    Danica
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    Default

    Hello and Welcome :lol:
    I have to ditto Kathy's question about Prednisone. If your doctor is truly a Lupus expert, then why did he not prescribe the cornerstone treatments for Lupus? Prednisone, Plaquenil, NSAIDs.
    Pregabalin is used primarily for Fibromyalgia. It may well be that you have Lupus with the overlap illness known as Fibromyalgia. Many of us (including myself) do suffer from both illnesses. The difference is that lupus is a disease and Fibromyalgia is a condition. Fibromyalgia is known for widespread pain in the muscles and tissues, migraines, sleep disorders, and other symptoms. Lupus is a disease of inflammation that can attack every single part of the body - including internal organs.
    In the first defensive treatments for lupus, Prednisone works to suppress the out of whack immune system that is attacking itself - Plaquenil works to heal and stop the issue involved with the skin (rashes etc.) - NSAIDS help with pain and inflammation (each drug does more than I've stated here, but these are general symptoms that they help).
    Ask your doctor (the Lupus expert) about these medications and let us know what his decisions are. Remember, you are your own best health advocate. Do not let him dismiss you and insist that he prescribe something to help relieve ALL of your symptoms.
    Please know that you are not alone. All of us, here, understand what you are dealing with and we are here to help you. I am so happy that you joined us.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Default Hi

    Hi and thank you for your reply. I dont know whether this is the same drug, but all year i have been on Prednisolone for my Asthma. I stopped it a few weeks ago as my asthma got a little better.
    In 2004 i suddenly became ill and in 2005 i was diagnosed with ME. 2 weeks ago i saw the ME Consultant who says i have Lupus and did some blood tests,which i have NOT had the results back yet.I get them in January 14th. This Doctor then prescribed the Pregabalin, which i have decided not to start till January because of the weird side effects. I did call my own Doctor and asked the question, how can you know for sure i have Lupus when i have not yet had the blood tests back and why am i taking Pregabalin if you are not 100% sure. My Doctor said the Consultant will know through experience as he see's many people with Lupus and has been a consultant for many years. I am so worried, because he said i have it and i have told people now i have it.But what if he's wrong? People will think i am making it up and i told my Doctor this and he told me not to worry. How funny...how can i not worry lol.

    Here are my symptoms and illness and what i told the ME Consultant :-

    Chronic Fatigue
    Pulmanary Embolism
    Insomnia (severe)
    Asthma
    Migrane n headaches
    Vision disturbances (just got glasses for the first time)
    Sound problems (everything too loud)
    Nose sores
    Severe gum infections and tooth pain
    Strange rash on tops of arms which comes n goes
    Little rash on face, but only a little (cheek bones)
    Severe neck and shoulder blade pain (intermitant)
    joint pain and aches (intermitant)
    depression
    anxiety (panic attacks)
    acid reflux
    irrital bowel

    Severe stomach/abdomen pain n swelling
    Hair fell out and has started to fall out now ive decided to try n grow it.

    WOW what a catch i am lol.

    Believe it or not, i was very healthy before, was hardly ever ill. All this happened all at once. Yes, when i see the consultant in January when i get the results i will know 100 % what i have. He did say to me the blood tests could come back negative and still be Lupus.....who do i believe? Please let me know your thoughts. Thanks.

    Love
    Angel.xx

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    Default lol

    I remembered more ailments:_

    Memory problems lol
    Numbness in arms and hands/feet/toes/fingers
    Stiffness in body
    Waking up after a dream (when i ever do get some sleep) i am completely numb, yet can still hear the 'man' in the dream laughing as he tries to strangle me.....yet i cant move or scream...even though i am awake
    Right leg and feet go dark purple and blue.
    Brain fog/confusion.....or is that cause im 39 lol

    Angel.xxx

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    Default sorry

    Real scarey heart palpatations as well.

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    Hi Angel,

    I know for a fact that the dr. can help you past this. Please call and beg to see the dr. or the nurse practitioner. Mine is great, and I don't mind seeing her whenever I can't get into rheumy.

    I went in while in the middle of an incredible flare, and she gave me a Medrol injection. That was two weeks ago, and I feel great. Having to make myself slow down.

    When I went in, I had every symptom that you listed above. Call and beg if necessary.

    It is a shame that when we feel the worst, we have to fight the hardest...but if you get a good rheumy, it really helps with the questions and fright.

    You might contact your local lupus support group, and get some recommendations for a good dr. in your area.

    Good luck to you,
    Phyllis

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