DOUBLE WHAMMY

This past week I was hit with a double whammy of flare-ups.  Having more than 1 per month hasn’t happened to me in a very long time but having 2 flares occur in the same week hasn’t happened in years.  I had a full blown flare last Saturday that put me in bed for the entire day. The flare consisted of pain in all joints, shakes, fever, sick to my stomach and a severe headache.

I thought I was better and proceeded with my week as normal but on Thursday of the same week the exact same thing happened. This flare put me in bed for 2 days.  I very rarely end up in bed for more than a few hours so I know I had pushed my body to an extreme.  I believe it had to do with traveling for 2 weeks, emotions over my grandmother, stress from work and life in general and I just didn’t listen very well to my body so it yelled at me and forced me to stop and take notice.

I kept up with my modified Bikram program and forced myself to walk 5000 steps every day which meant time in bed and a little time moving around and more time in bed.  If I don’t constantly keep moving my joints just stiffen up even more and it makes it harder to get going later.  This way I know even if my body says it doesn’t want to move my brain is much stronger and says it must move.  This is what keeps me going even though I know I will always have these flares.  As long as I can move slowly and put one foot in front of the other even slowly and gingerly I know I can overcome the tough times. Mentally I need a break like everyone but I don’t allow myself the break because then it makes it easier to let myself off the hook another time and my ambition to be better is what keeps me managing my MCTD on a daily basis.

This weekend I wasn’t running any races but I was living life at my normal and out walking the golf course with my mother.  I wouldn’t say I was hitting the ball well but I was out there and giving her great tips and making her golf game a lot better.  Life doesn’t stop even if I don’t feel well so I have to keep going as well.  My husband just hugged me this weekend and said I don’t know where you find the strength but I’m so proud of you.  I love hearing those words.

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4 thoughts on “DOUBLE WHAMMY

  1. MH July 18, 2012 at 4:45 am Reply

    I have MCTD as well. However, I was only recently diagnosed with it, even though I have been in pain for the past 3 years. Besides pain and swelling, similar to you, I also get a sore throat, chills and flu-like symptoms during a flare-up. The doctor’s orginally thought that I had Fibromyalgia, so I bought a supplement called Fibro-Response by Source Naturals. Since I have been on the supplements, I no longer get the sore throat and the flu-like symptoms. I take 4 tablets a day. I went off the supplements for about 2 months to see if they were really working and the flu-like symptoms came back after a few weeks; actually all the symptoms came back with a vengance. It takes about a month for the supplement to start working (at least with me). I still have pain but it does not seem to last as long. I am still trying to find out what medication works for me. I am on 10 mg prednisone until tomorrow. I have been on it for 3 weeks. I was on metotrexate for two weeks and I did not do well with it, so my rheumatologist took me off of it. Maybe plaquinil…I just don’t know if the side effects are worth it?

    I hope your journey brings you healing! Thank you for your blog;I will continue to read and follow your posts.

    • mevsmctd July 18, 2012 at 12:22 pm Reply

      Thank you for writing about your experience and the info on Fibro-Response. I’m going to look it up as I too have get a sore throat, chills, and other symptoms during my flare-ups. I would interested in hearing why they took you out of the Fibromyalgia category and put you in MCTD category. As far as side effects with Plaquenil they are very minimum and concern mostly the eyes but if you see your eye doctor regularly they can keep a close watch for you. If Plaquenil works for you it might be a good option but you and your doctor will decide your course of action. I wish you the best of luck.

      Nicole

      • MH July 18, 2012 at 6:27 pm

        When I first had pain…three years ago, I was tested for RA and my doctor said “well the good news is you don’t have Rheumatoid Arthritis”. I thought…why would I have that? At that time, the pain was mainly in my elbows, wrist, and knees. My doctor at the time wanted to do more testing, but I just thought that it was probably fibromyalgia and started reading books on natural cures for fibromyalgia. I bought the book “From Fatiqued to Fantastic” and followed the protocol in the book. I also went on the “Eat Right for Your Blood Type Diet”. I started walking 3 miles a day and for about a month, I had b-12 shots twice a week. I started taking Fibro-Response and d-Ribose.I did this for about 1 year. I actually went into remission for most of the time. The flu like symptoms went away completely, and if I did have pain, it did not last long. Then I started getting lazy and went off the protocol, thinking I was fine and I did not need it any longer. I also wanted to know if I really needed the supplements. Within a few months, the flu-like symptoms came back, the pain got worse and progressed to pain in my shoulders and neck and swelling in my hands and feet. Then the pain went to my chest when I breathe. I went back to the protocol, with the exception of the b-12 shots, which I am going to start again, but it hasn’t worked like before. However, the flu-like symptoms are gone. I am sorry I ever stopped the protocol! Maybe it will just take longer to work again. Also…the d-Ribose (Corvalen – 1 scoop three times a day) really helps me as well. Without it, I am worse. Three months ago, I got tested again for RA and it came back positive. I then went to a Rheumatologist and he took blood and urine tests and took xrays of my hand, feet and chest. The tests came back with no damage to my hands or feet…mild interstitial lung disease and MCTD. I don’t know what test’s show that, but that is what my rheumatologist diagnosed. As for the Plaquinil, I read recently that it causes major depression and fatique, besides blindness. I am so scared of the medications! I am thinking about trying stem cell treatment. I am researching everything!

        Again, thank you for your blog!

      • mevsmctd July 19, 2012 at 7:47 pm

        Thank you for telling your story. I have reserved my copy of Fatigue to Fantastic from my local library and looking forward to reading it and blogging about it.
        I enjoy reading tips as I do a lot of reading on health for me and just in general.

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