What is Fibro Feelings?

For the past 2-2.5 weeks my wrists have been in a flare-up. I’ve had intense burning, throbbing wrist pain. It was so bad I had to take an opioid pain killer  just to dull the pain enough to be able to fall asleep one night. Of course, this flare-up happened while my parents were in town visiting! While they were here were did lots of driving, so my dad had to do most of the driving for me. I’ve worn my trusty wrist braces daily – both my soft Ace Wrist Braces and my stiff forearm/wrist brace.  These keep me from over using my wrists and usually drastically cut down my healing time. I also iced my wrists at night, which isn’t that pleasant to sit through, but it really helps!

About a week ago my wrists were feeling almost back to normal (how they feel now), but then my right wrist made a loud popping sound as I got out of bed. It took me a few days of really making an effort not to use my hands, massaging my tendons and wearing my braces to get back to where I was previously in the healing process. I’m excited that I’m now near the end of this flare-up! A couple days ago I was able to drive around and post signs for my local Arthritis Walk, return library books and shop for groceries. After I got home I was even able to plant two flowers and water my plants. That did push it a bit, I was shaking when I finished, and my wrists hurt a little more later that evening. They were still feeling decent enough for me to cook a dinner that didn’t involve too much prep work.

Hopefully in the next few days I’ll be able to stop wearing my soft braces. Then a few days after that I plan to start doing some old occupational therapy exercises. I have them from when I’ve had bi-lateral tendinitis previously. That is also when I got my stiff forearm/wrist braces that are molded to fit me tightly. My wrists have been getting aggravated more frequently lately, so I think I need to work them out and make them stronger again!

My trusty wrist braces and small ice pack

This post is a continuation of my post on the National Fibromyalgia Association Coping Seminar in Seattle. Here I will further discuss what Martha Beck spoke about at the seminar.

Beck shared that when she was diagnosed with another chronic condition she received a pamphlet that stated, “To keep yourself from committing suicide, remember your religious beliefs.” The room erupted with laughter and Beck went onto to explain that she threw the pamphlet out and realized she needed to find a better avenue. She believes in taking “small, turtle steps” to feeling and living better.

It would be impossible to be around her and not notice how full of life she is – laughing, joking and smiling. This is evident in all that she has accomplished during the 30 years she has been living with fibromyalgia – earning a Ph.D., being a life coach, author and columnist for O, The Oprah Magazine! She claimed that she used to be very busy gaining approval socially and she thinks many people with fibromyalgia are. Beck said she noticed that the more she would try to please others socially, the more she got sick. She believes, “Knowing yourself is power.” She teamed up with the NFA and Eli Lilly and Company on the website www.knowfibro.com – where you can find lots of information, tips and tools to help you manage fibromyalgia.

Beck suggested using mental brain exercises, meditation and trauma release exercises to achieve greater health. She had us shut our eyes, focus on the area of our body that was in the most pain and give it a pain rating from 1-10. Then she had us continue focusing on that area but think the mantra, “may you be well, may you be happy, may you be free from suffering” over and over.  She suggested we also think the words, “relax” and “rest” and then re-rate our pain.  Most everyone in the room said their pain level in that area went down. Mine decreased by one – a turtle step!

After the speaking portion of the seminar I had a chance to speak with Beck and I asked her if she had any other fibromyalgia tips she hadn’t gotten a chance to mention. She answered, “If you’re not sleeping, take medicine!” She believes getting sleep is so important that we need to do all that we can to get it. Two of my other favorite quotes from listening to her talk to individuals are, “Half-ass workouts are great!” and “Never do all that you can.”

Stay tuned for my one-on-one interview with Lynne Matallana!

NFA Seminar Sign

What is Fibro Feelings?

Shortly after I wrote my post on sensitivities I watched, Sherlock Holmes. There is a scene at the beginning of the movie where Holmes waits for Dr. Watson at a restaurant. Holmes began looking around, making observations about his environment and the things in it. First he listened to a couple having a fight, then witnesseed a waiter polish and steal silverware followed by another waiter being told to straighten his tie. He experienced one small event after another, the background noise of silver clanking and conversation got louder and louder. Holmes shut his eyes, implying the sensory overload was too much for him to handle. The Helpful Hubby tapped me and said, “Its just like when you’re noticing everything!” I couldn’t help but smile because I was so happy  that he understood what it feels like for me!

That came on the heels of me trying my hardest to explain to my dad why his nail picking habit is not just annoying, but it is something I simply cannot handle well. My parents were visiting and, as usual, my dad was picking at his nails every couple minutes. On the couch, in the car, everywhere! I try to ignore it, but it is the ONLY thing I hear when he is doing it and it drives nuts! I can’t even try to think straight with it going on.

I finally ended up having him read my earlier post on sensitives, hoping he might understand the situation more. I’m not really sure if he did or not, as the nail picking continued for the duration of my parents’ stay. At one point my dad told me that I should find a job in which stellar hearing would be useful. I tried to explain that I don’t have better hearing, I just can’t ignore all the little noises like he can.

Even though my dad might not understand my sensitivities completely I’m very grateful that The Helpful Hubby does! Especially since he is the one I’m around every day and night!

This post is a continuation of my post on the National Fibromyalgia Association Coping Seminar in Seattle. Here I will further discuss what Lynne Matallana spoke about at the seminar.

After being reminded of the location of her power point clicker, Matallana said, “I have to be reminded of things.” I started smiling and thought, “Don’t we all?” I knew almost every person in the room could completely relate.

Although most of us have a tough road to travel before getting a fibromyalgia diagnosis, Matallana’s was certainly the roughest I’ve heard. During the period after she became ill, but before her diagnosis her friends slowly started disappearing. She began working from home more and one day her business partner showed up at her house while she was on the phone with a client, work files spread upon her bed. Her business partner collected all the files from the bed, told Matallana she was, “no longer valuable to the organization,” offered a check for a few thousand dollars and left. You should know that Matallana had helped build the company to a 5 million dollar public relations company. The check was not a fair offering and I’m assuming it felt like salt on a wound.

Matallana’s road continued on, seeing 37 doctors and specialists with no answers. At this point she was fairly despondent and starting to wonder if it was all in her head. She ended up admitting herself to a mental institution where she spent 1 week. Luckily the psychiatrist there realized something more was going on. He told her that she had anxiety and depression, but she was also in pain and no doctors were helping her feel better. Almost as importantly, he told her she WAS valuable. Matallana was sent to a new, younger doctor who pledged to help her, although he wasn’t exactly sure how. He was the first doctor to even mention the word fibromyalgia!

As Matallana researched fibromyalgia online she found more people felt the same way that she did. She became passionate about helping those people and created the NFA. Matallana spoke of the importance of living your life with the 3 Ps: Passion, Purpose & Pleasure. She said by living this way she has realized that sometimes it just makes more sense to enjoy a movie than to wash the dirty dishes. I often ignore the dirty dishes to enjoy time with The Helpful Hubby in the evenings, so I highly suggest trying this. Matallana also suggested that at the end of the day everyone write down 1 thing that made them happy and 1 thing positive that happened to them.

She closed by saying that she “could talk for hours and hours” of what she has learned over the past 13 years living with fibromyalgia. I think many of us feel the same way. Stay tuned for future posts on my interview with Matallana as well as what Martha Beck spoke about at the NFA Coping Seminar.

Lynne Matallana, NFA President & Founder

What is Fibro Feelings?

I haven’t been sleeping well the last few days and have also been having horrible back pain in the morning. This pain starts when I first awake in bed (usually around 6am) and lasts until the afternoon.  The pain is dull and radiates through out my whole back, making leaning down to feed Squeaky his breakfast very painful. On top of that, last night in bed and today out of bed I have been having lots of shooting pains all over – toes, breasts, stomach, etc.. So annoying and uncomfortable!

I had plans with a friend to see her new apartment and catch up at night. I hadn’t seen her since before my trip, so it had been awhile. If I didn’t have plans with her I probably would have taken a pain killer. I really wanted to not be on medicine while driving though and to be able to enjoy a martini with her. My friend was nice enough to offer to reschedule when I told her I wasn’t sure how long into the night I was going to make it. She understands the need to reschedule plans, suffering from IBS herself.  I told her I wanted to keep our date since I wouldn’t be able to reschedule for another two weeks.

Since I went without meds I iced my back with an huge ice pack a few times in the afternoon. Icing considerably helped the pain and increased my ability to get things done for about 1.5-2 hours each time. I went straight from icing to the kitchen sink to get some dishes done while I was still numb and succeeded!

The time with my friend went well and was without too much pain. I had my car seat heaters on while driving to and from her place. While at her apartment I saw an amazing sunset with the reddest sun I’ve ever seen! By the time I went to get my camera, the sun had slipped behind the buildings, but it is a mental image I won’t soon forget!

My big ice pack - a hot/cold therapy gel pack