It’s been a while since I shared my journey with fibro and RA pain. A new friend and fellow pain warrior asked if I would do an interview on her blog, so that gave me the chance to update my story.
When did you notice that something was wrong, at what age do you think the first symptoms appeared?
My first symptom was severe chest pains at the age of 11 or 12. Of course, after chest x-rays and such, nothing was found to be a problem, so it was diagnosed as “growing pains”. I had these pains all through high school. In retrospect, the more I learn about fibromyalgia the more I see that I have probably suffered all my life. Fatigue has always been an issue for me.
Normally it takes a few years to get the diagnosis. What was it like for you?
No other research was done until after we returned from a cruise in February 2011 (49 years old). I acquired dis-embarkment syndrome which is when a person never gets their land legs back after leaving the ship. I still have a feeling of bouncing in a boat (10 years later). Months went by as doctors tested me for the problem.
In August 2011,
I had an episode of shortness of breath. No diagnosis was found. Then I awoke one morning with a crick in my neck. I went to a chiropractor who tried to give me an adjustment. My neck would not move at first but when it finally did, it shot pain down my neck and body.
September 2011
My journey with pain really began one Sunday in September; I laid down to rest but only lay about halfway down when pain shot across my lower back. The slightest movement would cause excruciating, contracting pains across my back. I was confined to my bed for about a month. No medications except large amounts of prednisone were helpful.
October 2011
After visiting several doctors, I ended up with a blood clot in my left leg because I had been immobile for too long. Visiting these doctors entailed being carried out of my house in a wheelchair by four men. After recovering from the blood clot, my doctors decided to send me to Mayo Clinic. (Happy 50th birthday!) The doctor sent me home and said wait for Mayo Clinic to call.
December 2011
Mayo Clinic called me within a month just to get my information and give me instructions for setting up an account. They said that it would probably be 6 months to get an appointment. I thought, “No way I can have this kind of pain for six months”, so I asked to go to Emory University. We went to the spine center at Emory but they found nothing wrong. Fortunately, after a month or so, Mayo Clinic called and had an opening.
January 2012
The first appointment at Mayo was with one doctor. I brought him all my records and shared my entire story. We returned 2 months later for 3 days of testing and seeing several specialists.
March 2012
I went home with a diagnosis of Central Sensitivity Syndrome with indications of Fibromyalgia, Myofascial Pain Syndrome, and Chronic Pain Syndrome. What a mouthful! That was sometime in March 2012 – a year and one month after our cruise. When I talk with other fibro patients, I feel that I was fortunate. I am thankful that I was so quickly sent on to Mayo Clinic. It is quite an amazing medical center. I wrote a post about Mayo Clinic.
June 2012
After a few months of medications for the fibromyalgia, I was able to begin to reduce the steroids. At this point, my knees began to swell and have a lot of pain. So I was sent to an orthopedic specialist. He diagnosed a torn meniscus and arthritis.
January 2013
Knee Surgery. Repaired the meniscus and cleaned out some arthritis. But things were not looking good in my knee. He wanted a second opinion. So we were scheduled to return to Mayo Clinic. Once you are a patient, It doesn’t take as long to get an appointment.
March 2013
Returned to my rheumatologist. He agreed that it was likely just osteoarthritis. But he decided to schedule all the blood work again. It turned out that I have Rheumatoid Arthritis. I wrote about the difference between osteoarthritis and rheumatoid arthritis here. The RA was caught early. The doctor said that I was fortunate and would probably not have the disfiguring that most have.
More of My Journey with Pain
I answered more questions with Bettina on her blog, Me, Myself, and I
I also did a more detailed series of my journey back in 2015. You can find that series at my personal family blog, The Farmers Place ~ 31 Days of Waiting and Trusting
Thanks for Caring;
Mandy
Pastor’s Wife (retired) & Chronic Pain Warrior blogs about how to make it through anything by relating her own life experiences to her writing. She is passionate about her love for the Lord and desires to spread that passion to others. She has a great desire to encourage women who are following behind her.
It was good to read your story again, Mandy, as it reminds me of how faithful God is to help each one of His children through the hard times! Even when it feels like it is too much to handle, He gives us His own strength. Thank you for this beautiful reminder this week. Blessings dear friend!
Thanks Bettie. It’s always good to hear from you, the best of friends and a great prayer warrior.
Hi Mandy! It has been a while since I’ve stopped by. I’m so glad I caught this post! Like you, I had pain throughout my early teens and it was chalked up to growing pains and working out too much. I’ve also come to the same conclusion as you. That it was fibro and AS and no one caught it until it was too late. I’m so glad you shared your story. When we share, I always see overlaps with other patients and it makes me feel less alone. Take good care and have a great weekend!
Hi Carrie! IT’s good to see you again. The sad part is we suffered for so long with no hope. I am thankful to FINALLY in my 50s to have an answer and some help. Blessings to you!