When Karen G Clemenson asked me to write an article about Fibromyalgia, the Central Sensitization Syndrome, I wasn’t sure if I was the one who should be writing it. You see, I don’t have Fibromyalgia. I do however know several people in my life who have Fibromyalgia. My research took me on a journey. A journey of discovering the complications of having such a complicated, problematic, and often viewed as all in your head illness.
When you consider that 1 in every 50 people have Fibromyalgia, you realize how real this illness is. That the symptoms that sound so miserable include, numbness in feet and hands, frequent headaches, joint pain, memory loss, and for women painful menstruations. I feel so bad for those of you who suffer with Fibromyalgia. I want you to know that Fibromyalgia is real, very real. It isn’t all in your head. That it is considered by the National Institute of Health to be an established medical condition.
I did my research and I found some great resources that I am going to share with you. It is important for us all to have information. From the blog Chronicles of Fibromyalgia, which you should check out if you can. I learned from many of her posts that it is hard to find people to believe you, to support you, even doctors. It is often misdiagnosed as severe depression or someone who is just wanting pain medication. This makes me sad and a bit frustrated by our medical profession. It takes a caring, good listening doctor to finally get the help you need. I hope all of you find that supportive doctor. I would do what this women did and make a binder full of your medical records and take it with you for the doctor to read.
It is time for me to share some things with you. Just to let you know that I am taking these recommendations from the source at FMAware.Org. Which is a good resource to share with your family and friends who are your support people while you are battling this illness. I suggest you read it for yourself. I have modified some of their recommendations with my own thoughts, because that is how I roll. I’m going to do it by subject headline and then my suggestions for each one. A bit of a change from my usual way of doing things. Just because there is so much for Fibromyalgia due of the seriousness of this illness. Caution needs to be taken.
Exercise
- Exercise is good, but parameters must be followed to protect you from more injury.
- You first must realize pain is going to happen, but it is important for you to strengthen your muscles so that can do more in spite of the pain. Exercise does decrease the symptoms for some people, but for some it doesn’t.
- It is about building your muscles so you don’t have atrophied muscles.
- You need to start slow, I mean really, really slow. Like 5 minutes kind of slow, like I have to. I feel your pain there, in the sense that I’m starting slow with just two minutes on my own journey. It is important to start slow. You want to be able to exercise, but if you are experiencing pain 2 days after your workout than you are definitely doing too much in one setting.
- Don’t give up, keep decreasing your workout until you hit the sweet spot for you and then slowly build up your tolerance.
- Your activity must be approached cautiously. Make sure if you have a personal trainer or health coach they know this and that they know how to work with those who have your condition.
- Most importantly, be gentle with yourself. And always and I mean always exercise under the supervision of your doctor so they can monitor you.
- Make sure all your support team is connected and know the protocol. Perhaps, maybe even taking the personal trainer with you to an appointment that is set up with the doctor so that they are doing what is best for you.
- You are your best advocate. One of the suggestions from the FMAware.org website is to track your progress by creating a spreadsheet. Or if you are a tech guru get a fit bit or something like that.
Sleep
I learned on this journey that sleep is a challenge for Fibromyalgia sufferers. There are some great suggestions. I’m sure you know what the rules are:
- Stick to a schedule
- Don’t drink caffeine after 4 PM
- Keep your room cool
- Don’t have a TV in your room or your cell phone, etc.
I’m not going to beat you in the head with this list. We all know what to do. But there are some great medications that help you sleep too. Just talk to your doctor. I read a great book by Arianna Huffington called “The Sleep Revolution” if you ever want some great ideas or information about how important sleep is to your body I suggest you read this book.
Emotional Health
I learned something. Emotions can make your pain worse. Wow, that is interesting. Isn’t it?
I know for me, I have my emotional rollercoaster days. Or what I call vinegar days, when everything that could go wrong, goes wrong. I want to pull my hair out. Or better yet have a special button that I push that this big giant bat pops out and hits someone for me.
Just like in my blog, Being Intentional, I talked about my conversation with Summer D Clemenson, my sister-friend and awesome writer for Wellness Works NW, about being intentional about our emotions. It is vital for us with chronic illnesses. No matter what the illness is.
If your family or friends just are not getting your condition. I know for me there are some fabulous support groups on-line that I have joined that help me talk without fear of judgment and they get it, because they are suffering with my same condition. I would suggest you join one.
Practice some deep breathing exercises, pray, meditate. Now that you know about this great resource at FMaware.org, maybe you can share this link with your family and friends so that they can learn more about your illness. Usually when people are mean or seem uncaring it is because they are either afraid, and do not know how to express it appropriately, or they are ignorant to what the condition is. Be a teacher, share this link, let them explore. Be open to a dialogue. Be an advocate.
Nutrition
There is no magic diet that will cure your illness. Nothing cures it, let’s be honest. For me, I know my joints hurt when I eat nightshades or too much sugary goodness. Just like I have to be intentional with my emotions I have to be that way with my eating. This is a life style change. There is no diet plan or eating thing that will cure you. I suggest just listening to your body after you eat a food and if it bothers you or triggers some pain don’t consume it. Simple, right?
To my family and friends who suffer from Fibromyalgia just know that I love you. That I’m proud of you all for stepping up courageously to fight. It takes guts. For you, dear readers, I do not know: You are a courageous warrior. No matter if you are a man or a woman, let’s support each other with kindness and respect.
I have a suggestion that is all my own. What has helped me the most on my journey was when I took the Living Well With Chronic Conditions class here in Vancouver. I know Longview, Washington doesn’t have one there, yet. Karen, Summer and I completed this class last year. We learned so much. Talk to Karen about what she has learned. We are part of your team and I know for me, I will research it until I find an answer and I know Karen and Summer will do the same thing. You are definitely not alone.
If you are interested in making an appointment for a free initial consultation Contact Wellness Works NW. Karen will be glad to help you create your personalized Wellness Plan that includes movement that will help you live with fibromyalgia or other chronic pain issue. Wellness Works NW is located inside Forever Fit Gym. We serve Cowlitz County and the surrounding area.
Here are some links that I want to include:
- ChronicBabe.com
- Chronicles of Fibromyalgia: Horrible, Terrible, No Good, Very Bad
- Counting My Spoons
- Health line: Is Fibromyalgia Real or Imagined?
- Myalgia.com
- National Institute of Health: Figuring out Fibromyalgia Perplexing Pain and Fatigue
- National Fibromyalgia Association: Starting an Exercise Program with Fibromyalgia
Jamie Holloway lives in the Portland, Oregon area. Since October 2011 she has been sharing her Journey Toward Health and Wellness with Vasculitis through her blog at JamieChasesButterflies.com. As most of her articles will be about Men’s Health, Jamie intends to write her articles as though she was sharing important information with her brother, nephews and friends. We hope you are as inspired as we are with the raw candor Jamie uses in her writing. If you would like to help support Jamie’s writing efforts please Donate now.
