Caution. Extreme fatigue, high and constant pain can bring on a flare

Could so many days of pain that does not subside bring on Still flare? I know it can, but I don’t want to even allow the thoughts to take hold in the universe.

My poor leg. Our 1st floor of our house flooded and I came down the stairs and hydroplaned across the white tile floor into a couch. My left leg went under the couch and was stopped my knee cap. And have 2 poor broken toes that hit the leg of the couch.

The MRI reveals I have several high grade contusions to the lateral and also medial femoral condyle. I have a 4 x2 cm capsulosynovial cyst that formed on the medial femoral condyle. The pain I feel when I take steps is light electrical shocks. I cry at night when I shift or move my leg. I wake up tired and in pain.

I must wear brace for 4-6 weeks 😣

No flexing knee for 3 weeks

No jacuzzi

No running

No jumping

No riding horse

No long distance walks

This is all very awful, but the symptoms I have at night are the most worrisome.

I’m not sure if the extreme cold I feel at night with teeth chattering and then a fevers that beaks is due to experiencing constant pain? I did have labs drawn a month ago for a different situation. The labs were normal. But I may have to go back and have lab draws again soon.

The fear of a chronic illness that lurks in the dark is always in the back of my mind.

This past year I have endured so much pain from getting a knee in the jaw, a wrenched back from lifting patients at work and a Right leg tibial contusion. Now this. I’m exhausted from being in constant pain. I try and be mindful. I try to embrace the pain because I know there are people suffering in much more pain than I am.

If I could take the pain away from abused animals by having and accepting this pain, I would do it. But in the meantime and brutal existence with pain, I take a deep breath and pray.

Stay healthy my friends.

Daily Update

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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.

4 Comments Leave a comment

  1. Hi Claudine,
    Thank you for your posting. Wondering how are you doing. I found your blog recently, all this time did not really search the web to find out about other’s experiences with AOSD and how they deal with it. All I did was searching for cures. Anyway, I was diagnosed with AOSD back in July 2016, and not believing what the doctor say because I was told AOSD is rare and from where I come from (Malaysia), and was advised not to take steroid due to its side effects. But after a lot of trying out other alternatives, my family decided to let me take steroid (in mid Oct 2016) and within 2 days, I gained back about 50% of my strength and within a week, I am back to my normal life, and back to work in November2016.
    Cutting the story short, relapse in August 2017, all symptoms is back, except fever. Tried alternative medicine and started to work from home. Sometimes I cannot walk. Then in November, I went for a trial session of “reducing ion” treatment, the consultant run a live blood analysis, and told me I have change my diet by reducing sugar, rice, flour, salt…and take high dosage of Omega3. Not really believe her, but I cut sugar in my diet and I take up to 2000mg of omega3 (those high in EPA) daily. After 3 days, all the rashes gone. I started steroid and MTX in December2017 because my family worry prolong having the symptom of joint pain might do more damage, and I still continue with TCM (Traditional Chinese Medicine which I started in July 2016) + I started with the Reducing Ion Treatment (3 times a day). Jan and Feb 2018 lab test shown improvement, I am not sure is the medicine or the treatment (starting in Jan2018 – 5 times a day), but I am back to work in the office in Feb 2018, and all the symptom is gone. During this time, Feb2018-Nov2018, I am back to my normal diet which is for normal people (spicy, fried, snacks, pizza, cheese, ice cream, red meat). And I have not had any flu or fever or falling sick. Which is a bit strange considering that I was told people taking steroid will get infected easily. Back to indoor wall climbing in May 2018. Started to go to gym last week to control my weight which has been going up because of the ‘normal’ food I take.
    I have lab test and see my doctor every 5-6weeks, and reducing my medication with each visit. Today, 19th November 2018, marked the 1st week I stop MTX. Free of medication. Now is where the real test begins. I am hopeful. And I hope and wish you and everyone is doing well.

    Best wishes,
    Allison L.

    • Dear Allison, it’s a strange thing I have found with this disease, sometimes diet change works for a long time, a few years for me and then it doesn’t seem to work at all. Then I go back to a very strict diet of no dairy, meat, sugar and flour. After a couple months, I go back to eating normally (meat, milk, and bread and all is fine. Strange disease.
      I am so glad you are doing well now. I do agree, that when I was flaring each month for a few years, MTX and then Medrol was the only combination that helped me. I am so grateful you had access to steroids. For me they were a prayer answered to begin to gain strength also.
      I am so happy that you are feeling well now. Best wishes to you for a healthy year ahead.
      Stay healthy friend.

  2. I can’t imagine (but can in ways) what you are going through. Prayers have been with you since I read this post and I send good vibes often. Wonder if you got your labs drawn again? My rheumatologist told me to get them done any time. He seems to understand the need for reassurance as well as catching a flare early. Yes, it all is exhausting….life changing and stifling.
    Just wanted to know I care.

    • Dear Patty, thank you for your kind words I had labs run and had a very mild elevation in some areas, but enough to alarm the Rheumatologist. I did sleep a lot, up to 16 hours for 3 days straight and then felt normal again.
      It is such a strange disease, almost as if it is checking in to make sure we are watching our stress , sleep, and diet.
      All is well now.
      I hope you are doing well and feeling fine.
      Please keep me posted. I am here for you and all who are going through this and just need an ear that understands this bizarre journey with this disease. Thank you for checking in.
      Stay health friend.

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