There are five million people who suffer with fibromyalgia pain. Even though the medical world is still trying to explain fibromyalgia, there are many unknowns that accompany it. Blogger does not even acknowledge it as a word (suggesting fibrillation instead) and many friends and family consider it a mental issue.
But if you are one of the five million, you know just how real the pain, fatigue, and other effects are. Here are six ways to help you cope.
1. Find a Sidetrack: My sidetrack is usually reading. I carry a book or Kindle with me wherever I go. I've found that when waiting, I am more keenly aware of the pain. When I watched my daughter's volleyball games, the time out or between sets were unbearable. But when I read, I could block it out. Your sidetrack may be a hobby or crossword puzzles. Whatever involves your mind engagement helps.
2. Buy a New Mattress: My daughter visited a sleep number bed store and was excited to share with me what she learned about fibromyalgia. The sales people are trained to evaluate what is needed for better sleep and pain control. I put one on my wish list! Good rest is important, and often I see a connection between my pain level and the amount of sleep I get.
3. Set an Alarm: My massage therapist (see #7) suggests I stand up once an hour. It's difficult for me because I get involved in my writing and don't think about moving. My husband takes care of that when he is home -- he sets an alarm for every hour. I don't always want to move, but I can tell a difference when I do.
4. Eat: Okay, so that one is qualified. It's thought that caffeine isn't healthy for a person with fibromyalgia. But there are other foods that do help with pain. Ginger and peppermint are good for muscle pain and turmeric for chronic pain. I may or may not have read that chocolate helps with fibromyalgia pain.
5. Socialize: Socialize with other fibromyalgia sufferers. I remember the first time I read an article about a woman who had fibromyalgia. With tears streaming down my face, I kept saying, "me too" as I read. There's a special bond between us, and I believe some of it is because most people don't see our pain. If your body isn't in a cast or you're not going through chemotherapy, it must be in your head. But when someone says, "I've dropped things all day," or "I looked at the stairs, and it's not happening today," there is an instant bond. There are several support groups online, too, that can help give you the "me too" feeling.
6. Change Your Lifestyle: Stress has a large impact on how you function. Sometimes it means changing your lifestyle. For me, one thing I needed to change was entertaining. By the time I prepare for guests, I'm too tired to enjoy them. It also means limiting commitments by learning to say no. That's a hard one for most of us. Don't, however, sit home and do nothing. Find a balance. Yes, sitting on bleachers for my grandsons' little league games may hurt, but the positive mental vibes outweigh the pain.
7. Find a Rhonda: Rhonda has greatly improved my day-to-day living. When I first heard how deep tissue massage can make a difference in a fibromyalgia life, I didn't know where to find one. I called my health food store and they gave me Rhonda's name. I go every other week for an hour. Not only did God give me a fabulous massage therapist, He made sure she loved books and reading. I get a mental fix when I go, too.
I hope these few ways helping me will make a difference in your life, too. I don't want the disease to define me. I want to be joyful. These seven steps help me find that joy.
If you don't live with fibromyalgia, here are a few ways you can help us cope:
1. Understand that some days I can and some days I can't. Don't take it personally if I can't do what you've asked. It's not an excuse for getting out of helping.
2. I've tried every natural cure known to men. Just because I don't run out and try what you suggest doesn't mean I don't want to get well. It just means I am tired of spending money for fool-proof cures that just don't prove to be a cure.
3. "I'm fine" doesn't mean I am as fine as you. Quite frankly, you don't want to know my litany of pains. "I'm fine" means I'm coping. I'm not being untruthful just because I define "fine" different than you.
4. When I turn down an invitation to socialize with you, it doesn't mean I don't like you as a friend or you aren't important to me as family. It means the thought of getting ready is overwhelming, and if I push myself I'll suffer the next three days.
5. Educate yourself. All you have to do is type fibromyalgia in Google and you'll receive 5,990,000 hits. If you spend fifteen minutes educating yourself, you'll understand me better. Just learning how to define fibromyalgia provides a basis on which to understand your friend.
I'm filled with gratitude as I sit here thinking of the friends and family who understand my name is not synonymous with fibromyalgia. I'm still Pamela. I still love my family. Friendships are still important to me. I'm a reader and writer, and I love the process of gifting. I'm passionate about encouragement. My heart is joyful even on the days I have trouble locating the joy. I like making crafty messes and lighting candles all over the house. I like sending and receiving mail. I obsess over new tablets and Pilot fine point pens, and can't leave the house without both. Dark salted chocolate is my vice, and I can relate to Cookie Monster. I have a creative soul and am more intentional about my time with God than any other time in my life. I am not fibromyalgia pain. I live with it, but it's not me.
Each day I remind myself of Philippians 4:8, and I meditate on things that are true, honest, just and pure, lovely, those that are admirable, virtuous and praiseworthy. It gives me soul strength even if my physical strength is limited. And I know God is good -- all the time.
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Spiritual Sundays
The Weekend Brew
Saturday Soiree
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Monday's Musings
17 comments:
Invisible illnesses are horrible. The "Since you don't look sick, you must be making it up" mindset is annoying, but you are kinda glad you don't look as bad as you feel. :) You are an inspiration, my friend!
Although I do not suffer from this, I have loved ones who do. Thanks for a wonderful post & for helping me have a better understanding about fibromyalgia.
What a helpful post! Thanks for listing out so carefully both tips to help those who suffer with fibromyalgia and those who have a loved one who suffers.
Great information! And I'm practicing many of the same techniques for dealing with pain that is not fibromyalgia-related!
Interestingly, a friend just mentioned tumeric to me this week as a suggestion for the joint pain in my knees (though I think knee replacement is in my near-future)...
Great tips for those who suffer and those who know someone who does! I'm in the camp of doing too much and paying for it later. Sometimes because it's expected, sometimes because I have no choice, and sometimes because it's family related and I "want" to. Still struggling to find the right balance and learning to say "no."
Hi Pamela,
Thank you for your post :), Philippians 4:8 is important to me too and helps me with my pain.
Good comments to help others understand as well as to help those who also struggle. Thank you for sharing. :)
Thanks so much for sharing at Saturday Soiree Blog Party! I think these sound like tangible suggestions for managing pain and will be sure to pass along this helpful information. I hope to connect with you next week!
Very good post and so very helpful!
Blessings to you and may July be a great month for you,
d
Great tips and great illustrations - especially the encouraging Bible verses. Thank you for a lovely visit via Spiritual Sunday.
Brill just what I need right now x
Those are such wonderful tips. I agree that getting up and moving around each hour really help. When I sit for very long, it exacerbates the pain and stiffness. I have had fibro for many years. Some days are better than others...but a positive outlook really helps. =) Loved your positive post. Blessings, Valerie
My dad has had fibromyalsia every since I can remember. He aches and hurts so much but keeps going. It is so hard on him and he is so young (mid 50's). He works hard and like you, has tried every cure known to man. Some things help a little...but nothing has taken the pain away for good.
Such an amazing post, thank you x
Suffering from FM myself, I found your post really encouraging. Even though those are such practical ways to ease our pain, they are often things we forget to try. Thanks for reminding me of some of the ways I can try to make my days better. Blessings to you! Visiting from Considering Grace (through What Joy is Mine).
I recently had a friend diagnosed with fibro. I'm passing this along to her. I suffer from Mixed Connective Tissue Disease. While my symptoms are different, I resonated with some of your suggestions. It is so hard learning to say no and change your lifestyle--but so necessary. Thanks for the helpful reminder and thanks for stopping by the Living In Green Grass Fulfilled Fridays Linkup.
I recently found out that I have fibromyalgia. Before, when I still didn't know, I always felt guilty when I was not able to keep up with the house chores, other people's lives and lifestyle. Now I am changing my lifestyle, trying to not go over my limits. I try to keep a routine without pushing myself on a schedule. I take many breaks, I read, play games, brought the Internet, do crochet and try to keep my mind engaged. And when I am really tired or in pain I take a nap. I also try to do light/ moderate exercise 10/15 minutes every day, have a healthy and balanced diet and get enough rest. Now I am doing much better and enjoying life,though I am still very limited. Anyway, I had to give up the idea of having my house pristine (was it ever?).I am finding out that I can live without having everything perfect.
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