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The Journey to Finding Help

January 21, 2016 | Posted in: Chronic Illness and Diagnosis, Chronic Illness and Pain, chronic illness; support, Physicians

I have hereditary Fibromyalgia, but for most of my life, I didn’t know that.  I had been to many doctors. None of them knew what was wrong. I presented with different symptoms at different times, but one thing remained the same— I was always in pain. I have had numerous hospital stays, and terribly painful tests run to no avail. The doctor I had as I grew up believed I was in pain. He just didn’t know why.

I was actually diagnosed when I was 35 by a friend who is not a doctor. I was scheduled for exploratory surgery the following week. This lovely woman walked up to me at a meeting, said she thought she knew what was wrong with me, and started asking me seemingly unrelated questions. After a bunch of “yes” answers, I asked what it was. She told me I had Fibromyalgia, to cancel my surgery, and gave me the name of a research doctor to see. I’d been in pain all my life, but I’d never heard of Fibromyalgia.

I immediately went home and researched it. Yes! This was the answer. My symptoms had a name! I was so excited! I did cancel the surgery and went to see an MD. He came into the room, and I excitedly told him my range of symptoms had a name, Fibromyalgia. I was in so much pain that day that I could hardly bear it. The doctor looked at me, grunted, and proceeded to pull and push on my arms and legs. I told him he was hurting me. He looked at me and said I needed to get more exercise. That made me angry. If I could move without being in tremendous pain, I would have been doing more. He did give me a referral to a rheumatologist and set up an appointment for me to go there immediately.

I arrived at the Rheumatologist’s office and sat in the waiting room with tears streaming down my face. The Rheumatologist asked what was wrong, and I told him about my pain, my experience with the MD hurting me, and what I believed my diagnosis to be. He gently examined me. I had 18 of 18 tender points. My diagnosis was confirmed. He gave me a prescription for Naproxen and sent me home. The Naproxen didn’t even touch the pain. I called and asked if the doctor could give me something else. His answer was no.

I called the doctor who was researching Fibromyalgia. He said he would see me even though his study was closed, and he was working on his book. The only drawback was that he didn’t take insurance, and there was a large fee up front for the examination. I told my husband that I didn’t want to spend that kind of money. He urged me to, but I decided to just keep going on the way I had been.

About a week after that I hit the wall with my pain. I had far exceeded my tolerance, the pain was excruciating, and I just couldn’t take it anymore. My husband held me while I cried. I decided that I couldn’t live like that, and prayed that God would forgive me if I put an end to my suffering. My husband told me to call the research doctor. I did and got his voice mail. I left a message for him. I fell asleep in my husband’s arms with him massaging me. The doctor called at 3 a.m. He wanted to make sure I was alright. He told me he would see me the next day. I kept that appointment. There was hope!

When we entered the room to see the doctor, I was taken aback. He looked like Albert Einstein, wild hair and all, but he was so kind and gentle. He had lost a brother who had Fibromyalgia to suicide, and that’s what drove his research. He examined me with a dolorimeter which is an instrument that applies pressure until you feel pain. I was extremely sensitive. He told me he was sending me to a doctor who could perform a thyroid stimulating hormone test. From the results, he would know whether T-3 or T-4 should be prescribed. The result was T-3. Even though my thyroid tests show in the normal range, T-3 helped me get my life back. It didn’t make the pain go away entirely, but it gave me the energy to do things I hadn’t been able to do.

In my journey to find help, I have heard it all. “You look fine to me.” “You just need exercise.” “That’s all I can do to help you.” There are many more, as those who suffer with an invisible illness know all too well. I would encourage you to brush those comments aside, and continue to seek a doctor who can help you. What helped me may not help you, but you will find your answer if you keep pushing ahead. Never give up.

I know that God walked with me every step of my journey, and for that, I am immensely grateful. He gave me a husband who would be supportive and encouraging. He placed a friend in my path that also had Fibromyalgia, and recognized the symptoms. He made it possible for me to see a compassionate doctor who wasn’t seeing patients, but who had the keys to help me live. He gave me a friend who has generously allowed me to tell my story. My prayer is that you would find something in it to help you.

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Karen Stell is a married grandmother raising two of her grandchildren, and a Great Dane with her husband. She was formerly an accountant in the hospitality industry. In her spare time, she putters at painting, and gardening. She is also an online prayer partner, and Jesus rocks her world.

 

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4 Comments

  1. Bonnie Lyn Smith
    January 21, 2016

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    Wow, Stacey…this is a GREAT post for those with Fibromyalgia and also for the rest of us to understand more about it. I have several friends who suffer. Thank you to Karen for sharing with us! Blessings from #EspressosOfFaith!

    • Karen Stell
      January 22, 2016

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      Thank you, Bonnie, for your comments. I will be praying that your friends find the answers they need in their journey to find help! God bless you!

  2. Chris Carter
    January 21, 2016

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    My heart just breaks, reading how you had so many people not validate your pain and your physical ailments! I am so so sorry you had to endure so much to get where you are now. I too, thank God for that friend and your loving supportive husband and I am SO glad you are able to function more fully now.

    It’s just terrible to not have answers, and I’m so happy you found them!! Fibromyalgia sounds like a terrible disease. I hope this encourages those who suffer from it with hope for healing.

  3. Karen Stell
    January 22, 2016

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    I appreciate your comments, Chris. After having a doctor who believed me, but didn’t know what was going on to having a doctor treat me so badly was certainly a shock. I sympathize with others who go through this.

    I pray that everyone will find their answer to live without so much pain. God Bless you!

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