Friday - Last Day at the Mayo Clinic

Hello there,
Well our morning started out super early. We had to catch the 7am shuttle to the clinic and be at my appointment by 7:30am. It was the adrenal test and basically what they did was start an IV and shoot a hormone through to make my adrenal glands respond. And then they took blood every 30 minutes to evaluate how I was responding. I was quite nauseous. It it tasted like silver in my mouth. Very wierd. After that test, we went and got some coffee and then wandered around. It was only 10am but my next appointment was at 1pm. Not really enough time to do anything or go anywhere, but we did have lunch and spent some time in the medical library reading up on stuff we were told so far.

Finally it was time for the last appointment with Dr. Krotzer. He was the first doctor I saw upon arrival and the last doctor I saw upon departure. Such a great doctor and a good listener and very thorough. Final diagnoses is Fibromyalgia, Chronic Fatigue Syndrome, with vasculitis and Brittle type 1 Diabetes. But it is good news because these are all diseases within my control to take charge of. The Mayo Clinic recognizes both Chronic Fatigue and Fibromyalgia as legitimate chronic illnesses. The symptoms for Chronic Fatigue are the following:
ain symptoms:

• Fatigue or tiredness, never experienced to this extent before (new onset), lasting at least 6 months and not relieved by bed rest
• Fatigue that is severe enough to restrict activity (serious fatigue develops with less than one-half of the exertion compared with before the illness)

Other symptoms:

• Fatigue lasting more than 24 hours after an amount of exercise that would normally be easily tolerated
• Feeling unrefreshed after sleeping an adequate amount of time
• Forgetfulness or other similar symptoms including difficulty concentrating, confusion, or irritability
• Headaches, different from previous headaches in quality, severity, or pattern
• Joint pain, often moving from joint to joint (migratory arthralgias), without joint swelling or redness
• Lymph node tenderness in the neck or armpit
• Mild fever (101 degrees F or less)
• Muscle aches (myalgias)
• Muscle weakness, all over or multiple locations, not explained by any known disorder

The symptoms for Fibromylagia are the following:

Definition

By Mayo Clinic staff

CLICK TO ENLARGE

Tender points

You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.

Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.

Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.

Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

• Back of the head
• Between shoulder blades
• Top of shoulders
• Front sides of neck
• Upper chest
• Outer elbows
• Upper hips
• Sides of hips
• Inner knees

Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.

Co-existing conditions
Many people who have fibromyalgia also may have:

• Chronic fatigue syndrome
• Depression
• Endometriosis
• Headaches
• Osteoarthritis
• Post-traumatic stress disorder
• Restless legs syndrome

So there is me in a nutshell. I think after reading some of the brochures and books in the library people that are a type A personality tend to get this more then any other personality type. It is a disease that crosses all ethnic barriers. And usually flares pretty bad after a highly stressful event which as most of you know, I have had more then my share of this year. But now I have a plan of action and that is good. I have hope for the future. And that is good. I am off all the old drugs I needed to be off of. I have a few new ones and I am ready to face the world again. I will have to leave myself notes and train others to do so for me. Forgetfulness is a real symptom of fibromyalgia. It's called "fibro fog". I am not losing my mind, thank God. With God's help, some good nutrition, a good sleep pattern, and a good Spokane doctor I have a hope for the future. I am not going to die. I am not going to end up in a wheelchair. I am not going to have hands deformed by arthritis. Praise the Lord. In all the tests, blood tests, x-rays, etc. There was no sign of lupus, arthritis, MS, Parkinson's disease or anything else. I will need to learn to set boundries and realize that my energy comes at a cost. So if I want to spend a day at the lake, I will more then likely pay for it for the next three days. I need to remember that I am not superwomen and I do have limits. I can't always say yes I will do that. Sometimes it just has to be a no. Instead of cleaning my house once a week, I will need to break it up into 20 minute sessions 2 times a day. I will need to eat a better diet and take some good supplements that the doctor has given me. I will need to get some profession therapy because I am locked into "people pleaser" mode and need to learn how to relax and have ways to say no and set limits. Not only for myself, but boundaries for others. After all that I am hoping to at least get some massage therapy out of all this. Giggle..but serious.
We fly home tomorrow. Our good friend Brian is coming to pick us up and take us to the airport. We should be home by around 5pm. I miss my kids so much. I am so excited to see them.
I don't think I will be able to blog tomorrow. But I do plan on starting a new blog on living with and coping with these chronic conditions. As I learn, I will share and I think it will be a new adventure in my life as I move forward. Thank you friends and readers that followed along on this journey. It was well worth the biopsys, stiches, blood draws, adrenal tests, etc. I have the answers I was seeking and new way of life. I am excited to start living it. God bless you all. Thanks for your prayers and continued support. Love Becca