One Size Fits All? Hardly

allee Easter 2013wquotes

Good morning! I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost two years. Initially, my rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia.
In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.
Thank you for listening, each week I will have a new installment chronicling my journey- Which is now more frustrating than ever. I test positive for ANAs in my blood, but, the lupus tests are negative. There are several varieties of autoimmune disorders, with different caveats and health variations. It’s so frustrating because I’ve not yet found a doctor to say YES, Eureka! We know what’s wrong.
So, is autoimmune a One Size Fits All?
Someone recently asked me if I could take Humira for my autoimmune disorder. He has Rheumatoid Arthritis/Psoriatic Arthritis which is an autoimmune disease. He has such relief and success with Humira, he thought it could help me.
But, these diseases have unique traits and affect the body distinctively. Therefore, not all medicines will work.
For example, I took Plaquenil for several months, but, developed horrible aquagenic pruitis and water created a horrible inside out hives type itch. So, I stopped it, but, it wouldn’t treat the fibromyalgia and Sjogren’s anyway. Some research has shown using humira for Sjogren’s, but, the research is still ongoing. I currently take Lyrica, Cymbalta, amitriptyline, and my allergy medications because I’m highly allergic to almost everything outside.
However, with the Fibromyalgia, I will continue to exhibit and acquiesce to the fatigue, neuropathy, and the brain fog. I’ve found that I need a minimum of nine hours sleep most nights to feel rested the next day. Frequently, I’m fatigued by even a fast walk on the treadmill. By the end of the day, my pillow is sometimes the only thing I look forward to.
Yes, I HATE it.
I’m not a lazy person, but, these diseases combined make me feel that way. I’m slowly coming to terms with it. However, it takes my friends and family longer to understand it. Maybe it’s because this is an invisible illness, for the most part. I hope I can continue to feel a little bit better and I do the things that now make my life more “normal”. But, it takes time and a new routine.
I’ve started massages every two weeks. Yes, it cuts into the budget, but, the way my muscles became wadded up, I found the massage keeps them smoother and more pliable. It’s amazing! I found a massage school where the students perform the massage and the rates are much less expensive than a licensed masseuse. I just cannot afford it any other way. So, maybe you could check into massage schools for cheaper rates. Everyone can benefit from the medical benefits of massage therapy.
I will also stress the workout AGAIN. I don’t care how tired I am, at least 30 minutes of something helps reduce the fatigue and lethargy. Especially YOGA, it’s amazing for the stretching and breathing and muscle strength. I foam roll after every workout and that helps release pressure and lactic acid buildup.
These things take time and I don’t always want to do them. It’s a struggle to go up to the gym (which is in my office building- SCORE), but, I have no excuses. My message to you is keep going—whether it’s a new doctor, a new symptom, a new question, a new workout, a new medication, whatever it is. Don’t stop. You can get better. I went from 60% to 85% and that’s pretty good.
The lyrica and Cymbalta together gave me back a better attitude, less anxiety reaction, and a happier mood. That in itself is amazing.
Please, please feel free to comment, write, share. I hope to use this forum as a help to all of us, no matter what pain you are experiencing. You may also send stories to me via finlessbook at gmail dot com. I will respect your privacy and maintain your anonymity, if you so desire.
Hugs for today …


4 thoughts on “One Size Fits All? Hardly

  1. I wish you the best of luck on your journey. I have just started my own journey with autoimmune issues. I was diagnosed with Antiphospholipid Syndrome, a blood clotting disorder, in November and my Rheumatologist added Lupus/SLE to my diagnosis in March. I am still testing negative for Lupus BUT I have 7 of the other 11 criteria needed for a diagnosis plus with the APS antibodies and the Lupus on both sides of my family my Rheumatologist felt the diagnosis was justified. I was already on Plaquenil as part of my treatment for APS, so he added Imuran, an immunosuppressant. I began that last week. I am hoping beyond all hope that this is the key to making my symptoms better. It can be such a frustrating path to get to a correct diagnosis when it comes to autoimmune conditions. I hope you are one step closer in yours. Sending you lots of healing thoughts!

    • Oh, Nicole, I’m so sorry to hear this! I hope the plaquenil works for you. however, it created a horrible side effect for me, but, it doesn’t for everyone. I definitely hope the new combination of meds work for you. Please keep in touch and let me know how you’re doing. hugs from Texas!

      • Allee, Thank you! I’m sorry Plaquenil didn’t work for you. May I ask what it did? I’m hopeful the addition of Imuran is the ‘key’ to making me feel better. That what we always hope with each new addition right? How are you doing today? Hugs from North Carolina! 🙂

  2. Pingback: The Liebster Award & Eleven Great Blogs I Love | In The Lupus

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