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Feeling so So so Lost….

  • By Lyn

    This is probably the longest post on here and I apologies in advance LOL

    Hi guys I am new to this forum.
    6 months ago I was a happy go lucky 36 year old aged care personal career who enjoyed caring for others. In August last year I fell onto my left knee by tripping over a resident’s wheel chair- of all things!!!.
    My knee went from minor swelling to humungo in 2-3 days.
    I had an MRI and it came back with a meniscus tare.
    Around October my GP was puzzled as my knee was the size of a basketball and I had a strange circle like rash on the inner side of it he thought it might be gout and decided to try me on prednisolone steroids. It helped the pain and swelling by half. The only problem was he would only allow me to stay on it for a week so within 3 days it blew up like a basketball again.
    Around the end of Oct I started feeling really sick. I had nausea, malaise and a major unwell/achy feeling all over, kind of like a horrific flu and I couldn’t eat so I had dropped about 12 kgs by this stage.
    I went to have my second cortisone shot in my knee and the Dr took a sample of fluid first and said that knee is so infected there is no way I can do this shot, you need to be in hospital.
    I got to the point I was so sick and weak and in so much pain with my knee that my Dad rushed me into the ER with the request of my GP with the worry I had major sepsis.
    In the ER they immediately thought I had sepsis.
    My blood tests were off the charts, my White count was 16,000 +, my red blood cells extremely low and my CRP and ESR were above 130, and I had anemia.
    I was rushed in for an emergency arthroscopy/synovectomy surgery on my left knee where they flushed it out using 20 liters of saline water. They also removed the tare from the meniscus.
    2 days later with the Drs still not happy with my bloods they did the same surgery again on the same knee.
    Whilst in the hospital they tested me for every infection under the sun, Viral, Bacterial, and fungal, also gonorrhea, all came back negative, and my bloods were still extremely horrific. They couldn’t understand what was going on.
    After seven days in hospital and even having surgery on my 37th birthday I begged to go home, they asked me to stay an extra day.
    I wanted to get out as during this time my Grandpa was placed into palliative care with cancer and given only days to live. He passed away 2 days after I got home from hospital.
    I was sent home on crutches and an IV drip which they had placed into my neck through to my heart using 7500mgs of ciprofloxin antibiotics slow releasing daily, also 250 mgs of keferflex antibiotics orally, plus endone for pain relief. This was a cocktail that was administered daily by hospital in the home that came every morning for 3 weeks. At the 3 week point the hospital in the home at the hospital removed my IV as my blood work hadn’t changed so it was definitely not an infection so there was no point keeping it in or on the anti b’s.
    At the following outpatient appointment for infectious disease clinic, they were still worried as my blood test still showed the same blood defects.
    Also outpatient orthopedics were concerned as my right knee had started to swell and become painful, but they weren’t sure if it was from compensating for the left knee. They wanted to do another surgery on my left knee again, but I shied away from being operated on again.
    The infectious disease team did another round of full blood test and called me in and told me I need to see a rheumatologist as soon as possible as there is no infection but my blood work and inflammatory markers were very high, and with the rash on my left knee and upper body and poly inflamed knees asked me “if I’d heard of lupus”?
    Which I had, I had seen it in the movie what makes a family, and the actress died from it on the film. So this news scared the crappers out of me.
    I was given a referral to a local rheumatologist, and had scored an appointment in two weeks’ time.
    I went in to see him; he was a little man, who spoke very fast.
    He did a full thorough check up and questioned me about my rash and was concerned about a crackle sound in my lung. I had written down all my symptoms as I knew due to brain fog I wouldn’t remember half of them. He had suspicions as to what was wrong but wanted to send me to another doctor to see my rashes, and get his opinion. He told me he believed I had rheumatoid arthritis, and psoriatic arthritis, but wanted to send me to a dermatologist specialist for another opinion. He started me on methotrexate and prednisolone straight away.
    He organized for me to have 26 different blood/urine tests done to see what would come back.
    I was blown away I thought I don’t have arthritis I’m too young.
    Not until I came home and searched the net did I realize it’s an auto immune disease and a lot more than just arthritis. And again I was freaked out.
    I went to see the dermatologist and the first thing he said when he saw my rashes was had I ever been diagnosed with lupus??? There’s that lupus again!!! I told him no, but the rheumatologist has just sent me for tests to find out if it is lupus, and I find out during my next visit.

    I was on the phone to workcover today who told me they have just received a letter from my rheumatologist telling them that I have *stills disease* an auto immune inflammatory disease, and that my diagnoses pre dates my injury and now workcover have to consider cutting me off my weekly payments and medical expenses.
    I never had any pain in my knees before I had the fall.
    I did have other symptoms, I had major fevers, sweating, and night sweats, and creaky joints, sore throat and went through a stint of complete blackouts a few years back, but never had pain in my knees.
    I said to the workcover case manager thanks for giving me my diagnoses before my rheumatologist.
    She said she thought I knew and I said I was told via phone call a week ago all my tests were back and that he had diagnoses and would discuss it with me at my next appointment. But in the meantime he wanted me to get my liver blood test taken asap as he was concerned about my high LFT blood work.
    I’m so confused, exhausted and freaked out, but finally have an answer.
    This stills disease sound’s spot on to all my symptoms.
    I have so many fears, I am afraid for the future whats going to happen to me.
    I am afraid that I will no longer be able to do my job as it’s very physical.
    I am afraid for my financial affairs being cut off workcover.
    I’m afraid this disease will change me as a person.
    I’m afraid of how I got this disease.
    I’m afraid of the medication I’ve been put on and will be on possibly for life as it’s so toxic and makes me feel ill.
    My family is acting like they have heard enough from me or maybe they just don’t know what to say.
    It’s very hard because my Mum has multiple sclerosis and my Dad is recovering from the effects of carpenter’s carcinoma, and my Sister is so busy with her hubby and kids, job and running a business, she doesn’t have time to even talk to me or call me. Actually I think she just can’t cope as she had to care for mum when she was younger, I’d moved out at 16 and she is 6 years younger.
    It’s as if she has completely cut me off, apart from the random text every blue moon, I always up play that I’m feeling great even when I’m crappy… It hurts I can’t confide in her.
    Every time I try and confide in my mum she compares herself and how much worse off than me she is.
    I just wish she would tell me it’s all going to be ok, not want to hang up the phone because she can’t cope talking to me about what’s been going on with me as it is too stressful on her. I have always been close to my Mum and have always been there throughout her illness since I was 15 and she was diagnosed. I felt obligated being the eldest child. Have always been an ear to listen, and a clown to make her smile when she was sick or sad.
    I feel like I’m isolated and my family want to isolate me maybe there cups are full, and I make it over flow.
    I had a partner of 10 years but we got divorced 2 years ago. Sometimes I wish I wasn’t alone, but I know that relationship was unhealthy.
    It would be really nice to hear from others in the same boat.
    Im sure In time to come things will work out as long as I take each day as it comes and don’t panic so much. I guess the road we have been dealt is dealt like it is for a reason. What reason I have no idea, but there must be one.
    Thank you for letting me vent,
    Regards, RAstillstills

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  • By Andrew Lumpe, PhD Moderator

    Oh my gosh Lyn, you have quite the story! I’m so sorry for the terrible problems you’ve had and I’m glad you were able to vent at this site. It’s good that you’re seeing a rheumatologist and I hope that you continue to get clear diagnostic answers. Still’s disease is similar to RA in that it’s a polyarthritis. It seems to be pretty rare which may be why it is taking so long to diagnose. There’s a non-profit organization for Still’s – http://www.stillsdisease.org/index.php/stills-info/. I’m guessing that you’re in the UK and I don’t know if there are any support groups there. Please do see a counselor if you feel overwhelmed. Hang in there and please feel free to make connections at this site.

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