My first tip would be to set yourself up for success by scheduling your appointment at a time you know you’re typically awake and alert. While this is not always possible, there is some hope. For appointments made weeks in advance ask to be put on a cancellation list or if your doctor’s office doesn’t have one, call back every few days to see if an appointment at a better time has opened up. This also works for when you need to get an appointment soon, but nothing is available. I can’t tell you how many appointments I’ve made and moved using this tip.

Of course, you want to show up to your appointment early enough to fill out any needed paperwork or use the restroom. I try to always bring a bottle of water with me as well, so no matter how long I end up waiting in my room, I’ll be hydrated. This is especially helpful if I need to have blood drawn after the appointment. I also am sure to always have my trusty medical notebook with me. This is the most important tool for any type of doctor’s appointment I have. Please read my previous post about this, so you’ll understand all the ways it can help.

During the appointment make sure you go over any changes in your medication or refills that you need. Go over any new concerns, changes in your symptoms and questions. (You should write these in your medial notebook in advance). Jot down any key things your doctor tells you, as fibro fog may make it hard to recall easy thoughts and words later. Some doctors will even let you record your appointments, which may be easier than taking notes for some. Another thing to consider is if you want to have a family member/friend go with you as an extra pair of ears or an advocate.

Make sure you understand what your doctor is telling you and be sure to ask questions if you don’t. If you leave the office confused, it doesn’t help anybody. I think it goes without saying, but don’t keep any information from your doctor. This could result in a mis-diagnosis or unnecessary tests that will cost you time and money. If your doctor recommends that you do something and you have concerns or worries about how you’ll do, tell them your concerns. You’d be surprised at all the tips doctors have that they don’t share.

What’re your tips and tools for having a good doctor’s appointment?

A familiar site to us all*

*Image Credit: from www.flickr.com by Subconsci Productions

My Fibromyalgia Awareness Day started off in a very fibromyalgia type way. The night before I unknowingly ate something bad at dinner. My IBS had horrid cramping, but after a few hours and a cup of chamomile tea I finally felt like I might be able to go to sleep. Of course, this was all happening just as I was beginning my hourly fibromyalgia info tweets, as midnight hit the eastcoast. I went to bed, but then had insomnia for the first three hours.

Sadly, I had no time to sleep in. The Helpful Hubby was participating in a non-profit health event early in the morning and I wanted to send him off. Normally I’d be there supporting him the whole way, but I wanted to make sure I took full advantage of spreading fibromyalgia awareness. Even though I was only at the event for a short amount of time I was able to talk to four people about how it was National Fibromyalgia Awareness Day. At registration we talked with a lady who said some of her friends had fibromyalgia. I thanked her for supporting her friends and she said that after she got back from The Gulf War doctors thought she had fibromyalgia herself.

Look at all that purple "cyberg" hair!

Across the crowd I spotted a girl wearing a lot of purple and got excited that it may have been done for fibromyalgia. I complimented her hair, explained about purple being the awareness color and asked if I could take a picture of her hair. She was definitely outdoing my purple! As I was leaving I talked with a couple event volunteers. I shared that I was on the committee for our local Arthritis Walk and about it being National Fibromyalgia Awareness Day. One of the ladies said that one of their friends has lupus and they had done the Lupus Walk previously. After that I headed back home to work on awareness through social media.

Another thing I loved about the days surrounding awareness days for fibromyalgia and lupus (May 10th) was the tv mentions. Friday’s Undercover Boss showed a lady who has fibromyalgia. All the medicine she had to take was ruining her teeth and she said she had, “kind of lost [her] smile.” Part of me wonders if she meant that in more ways than one. Friday’s Ellen had Nick Cannon on and he talked about how he had kidney failure and then blood clots from his lupus. He said since his lupus diagnosis, he’s gotten in better shape than he’s ever been in. He also talked about having to quit his morning radio show so he could get more rest. Earlier in the week, Dr. Oz featured a man who started loosing weight and getting fit so he could donate a kidney to his wife. His wife, who has the same blood type, is living with lupus and will one day need a transplant. What great stories!

How was your awareness day?

Tom Hennessy, the founder of RESCIND, INC. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases), was the first to get things doing. In 1993 he designated May 12th as International Awareness Day for Chronic Immunological and Neurological Diseases. Conditions that fell under that umbrella were Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Gulf War Syndrome and Multiple Chemical Sensitivity Syndrome. Many of you know that May 12th is still commonly a combined awareness day for fibromyalgia and CFS/ME.

Why May 12th though? Hennessy chose the date to memorialize Florence Nightingale’s birthday. Nightingale was an army nurse who became chronically ill while on the front line. Many of her symptoms were similar to those in fibromyalgia and CFS/ME. She improved military medical care and founded the first School of Nursing, but was bedridden the last 50 years of her life. Nightingale was an inspiration then (a pioneer of the Red Cross movement) and still is today.

The National Fibromyalgia Association (NFA) started in 1997 and helped propel National Fibromyalgia Awareness Day to what it is today. For years they were the organization and contact listed for Fibromyalgia Awareness Day in the National Health Observance calendar published by the Office of Disease Prevention and Health Promotion and the U.S. Department of Health and Human Services. Sadly, National Fibromyalgia Awareness Day was not on the National Health Observance calendar for 2011 or 2012. 2011 is when the National Fibromyalgia and Chronic Pain Association took over awareness day activities from the NFA.

Will you be wearing purple this Fibromyalgia Awareness Day?

You may also be interested in reading:
National Fibromyalgia Awareness Day

For the first time since my hiking fall where I re-sprained my ankle and caused my bursitis, I rode my bike! Eight months of missing riding my bike and I’ve finally done it! I was a little nervous, but our Arthritis Walk planning committee met on Sunday to do a walk through of our three mile course. I knew it would be a bad idea for me to walk it since lately anytime I’ve walked for a long time/distance my bursitis has flared up. I still wanted to participate, so I decided to ride my bike along the route instead. I wasn’t sure that wouldn’t hurt, but I knew it’d hurt less than walking.

Since the ride, I’m doing pretty good so far. Most of what I’m feeling is just because it has been so long since I’ve ridden. My sitz bones are sore as well as my mid-upper back and I’m more fatigued than I usually would be from such a short ride. My right hip/leg area feels a little tight, but isn’t painful. Even though it was only three miles, it was all done at a slow pace since I was sticking with a group of people who were quickly walking. Near the end of our walk one of the other committee members mentioned that she’d wished she had brought a bike too.

Once again, The Helpful Hubby helped make this a success. He is so sweet. He moved our bike rack to my car, put air in my bike tires, greased my shocks and loaded and unloaded my bike. I wanted to be able to have the option to scoot my bike along with my feet, in case it was hurting to peddle. The problem was that my bike post wasn’t short enough for me to do that since that isn’t the “proper” riding position. The Helpful Hubby cut down my seat post so it could be lowered far enough down that my feet would touch more. It worked great and now I’ll have that option should I ever need it again.

What things are you looking forward to doing this spring/summer?

You may also be interested in reading:
Fibro Feelings – Ankle Sprain (Again!)

Just biking along*

*Image Credit: from www.flickr.com by Salim Virji

© 1983 Wong-Baker FACES™ Foundation. Used with permission.

It only took a few years of living in chronic pain to realize that typical verbal, “rate your pain from 1-10″ scales were skewed for me. When you’re constantly living in moderate to severe pain you start considering moderate pain as low (for you) pain. In your mind you start perceiving a 2 or 3 pain level as being your personal 0 or 1 level – since you are never without pain. On the other side of things you’ve probably had some experience where your pain was a 9 or a 10, which most people haven’t really experienced. This also effects how you think of a pain scale because you truly know how bad those 9 and 10 pain levels can be and are more apt to rate your pain lower than that.

This is why I think FACES is so helpful – all you have to do is look at the facial expressions to figure out which emotional feeling of pain matches the pain that you’re in. It’s funny, because FACES is meant to be used by anybody over the age of 3 – including young kids that don’t have all the language skills to describe their pain. In a way, our pain language skills have become less accurate due to the constant amount of pain we’re in. Now when I’m asked to rate my pain I catch myself sometimes looking for FACES to help me answer the question. Many of my current doctor’s offices don’t have them. If you think having one helps you out, consider taking a picture of it on your phone (so you can pull it up) or printing it out and keeping it in the notebook you take to doctor appointments.

What are your experiences with pain scales?

The last couple weeks I’ve been tapering off one of my medications and at the middle of last week I started taking a half dose. Of course, this is with permission from my rheumatologist. Over the last few days some of my bursitis pain sneaked back up, which is sort of a bummer. Luckily, it still feels way better than it has in the past. Only one day was it so bad that I had to ice the pain away, so I’m going to continue tapering off the medicine.

After a really busy seven of nine days I spent Wednedsay through Saturday resting. Boy did my body need it, mentally and physically! I wasn’t hurting too much, but was feeling fairly fatigued. The Helpful Hubby was trying to beat a cold, so he didn’t mind the low key time. By the end of the weekend we were both feeling much better. The highlight of me week was getting the exciting news that a long-time friend had just given birth to her first child. We live far apart, but I got to see pictures of her new bundle of joy online.

I also worked on my site a bit this weekend. The Post Archives (top right) now take up a lot less space, as only the current year is expanded. I also finally figured out how to fix the annoying centering that was happening to my posts when viewed in Internet Explorer. I hope these changes improve your user experience, as I’ve been wanting to fix them for quite awhile now. I’m always open to suggestions, so let me know if there is something that you’d like to see on here.

What kind of changes are happening in your life?

If only changes in life were so clearly marked.*

*Image Credit: from www.flickr.com by m.a.r.c..

This year’s article included indications for which fibromyalgia meds also helped two overlapping conditions – Irritable Bowel Syndrome (Amitriptyline, Duloxetine, Fluoxetine and Venlafaxine) and Restless Leg Syndrome (Gabapentin, Pregabalin). Newly mentioned meds are:

Sertraline (Zoloft) – A type of antidepressant called Selective serotonin reuptake inhibitors (SSRIs). It can improve pain, fatigue, mood and sleep.

Paroxetine (Paxil, Prexeva) – A type of antidepressant called Selective serotonin reuptake inhibitors (SSRIs). It can improve pain, fatigue, mood and sleep.

Newly mentioned medicines still under investigation for the treatment of fibromyalgia include:

Droxidopa (Northera) – A drug currently pending approval to treat Parkinson’s disease, could be used off-label for improving fibromyalgia symptoms.

Lacosamide (Vimpat) – An anticonvulsant drug currently in early trials, could be used off-label for improving fibromyalgia symptoms.

Reboxetine (Edronax) – A selective norepinephrine reuptake inhibitor (NRI) drug currently in trials for improving fibromyalgia symptoms.

Arthritis Today Magazine May-June 2012 Issue

My excitement about my bursitis seeming to be healing is still going strong. This week I was pretty active and it still hasn’t gotten any worse! Saturday the sun was shining brightly and I mustered up the energy to sweep the garage, vacuum my car, aid The Helpful Hubby in fixing our mower. I was pretty tired after that, but after resting a bit I cut The Helpful Hubby’s hair, did a load of laundry and cooked dinner. After that, I was on the couch the rest of the night, but I wasn’t hurting! Well, my back and feet were a little sore, but nothing I couldn’t handle. For the first time since September I feel like there is a chance I’ll be able to get back to biking this summer.

I can’t believe my local Arthritis Walk is only one month away! I’ve contacted over 100 businesses 1-3 times (mostly through email) and only have one more committee meeting left for this year’s event. Our next meeting is a walk through of the route, so I’m hoping my bursitis will continue feeling better and will allow me to walk the 1-3 miles without completely regretting it later.

One of the highlights of my week was meeting a friend’s two week old little baby girl. She was so previous and she just slept the entire time I held her. I remember the last time I held a baby boy, although a bit older, it made my back kill. I was happily surprised that I did not have any back pain after holding this baby for half an hour or so. Sadly, I also recently found out that someone close to me has breast cancer. I tried to compile the helpful info I learned from another friend’s breast cancer treatment to help. Of course, I also asked my Twitter and Facebook friends for information so that I could better prepare for talking to the person about it.

What was the highlight of your week?

I've had a sunny week with one dark cloud*

*Image Credit: from www.flickr.com by .FuturePresent.