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From Our Readers: Comments & Suggestions – 7/03/2014

  [ 4 votes ]   [ 1 Comment ] • July 3, 2014

From Our Readers: Comments & Suggestions – 7/03/2014
Thank You for a Great Letter

Re: A Letter for People Who Ask You About Fibromyalgia

I'm sure that all of us who have had an invisible illness have experienced the concerns and questions you addressed. There were times when in utter frustration with doctors, friends, co-workers and even complete strangers that I felt put upon to justify my illness. There were raised eyebrows when I could no longer take part in normal activities that I had previously enjoyed. There were questions, and doubts when I took a medical leave, when I applied for disability, when I took an early retirement and when I tried all manner of treatments. When questioned about my fibromyalgia, I often replied, "If every part of my body that hurt were bleeding then you could begin to understand the pain I'm it."

Thankfully I am one of the fortunate ones. My fibromyalgia has been in remission for more than thirteen years. I am forever grateful for the unique mind-body-spirit wellness work that looked beyond my symptoms and helped me to identify, deal with, and resolve the stressors and unresolved issues that helped to cause my illness. Thanks to Joy of Healing I am well beyond my wildest dreams.

Thank you Sue, for your articles and comments about this chronic, painful, and little understood illness that afflicts so many. – jkomanchuk

This letter is perfect. I am going to make a copy for my doc, who is most sympathetic and proactive, but it can't hurt to remind her of some of the challenges I may be facing. I love that the letter is so comprehensive, and if there is something major going on in your body that is not mentioned, you can always add it to the letter. Thank you again for this. – kynamc


Experiences with Exercise and FM

Re: Low Aerobic Energy Production and Pain in Fibromyalgia – Is Your Microcirculation to Blame?

I have a diagnosis of osteoarthritis, severe chronic neutropenia and fibromyalgia with myofacial pain syndrome. My pain was once through the roof and nothing touched it. I began seeing a chiropractor and getting the spine aligned and then began to work out on a regular basis. That was hard because it wore me out more than perked me up and it hurt so much I could barely even try. But I began very slow and now I am up to working out about half hour or so a day. And the fatigue response to exercise has lessened greatly! It just took longer and I had to pace myself with the results. I do not run, I walk, and I bike indoors, and lift weights. Nothing too hard or difficult. But I am getting there after years of nightmare pain and being deathly sick, I feel like I am able to get through the day and even work out consistently. – graced1

A few summers ago, I decided that my fat old dog and I would work up gradually. We would walk to the park (two blocks), rest and walk home, Adding one more block every week during the summer. So by the end of the summer, we'd be walking probably ten blocks a night. At the end of the summer? I was still walking to the park, resting and walking back, exhausted by the time I got home. I told my rheumatologist that there is this brick wall that I just can't break through it. She said (she's young and gorgeous and built well), "you just have to force yourself to get through that brick wall." I didn't think she appreciated the difficulty I have. I bought a semi recumbent bicycle for the living room. I can ride that while watching TV for ten minutes. I just can't make it any farther, but at least I am feeling increased circulation in my lower legs and feet. So I guess that's what I will do. Sometimes I feel like I'm wading through 3' of water, I just can't lift my legs any higher. I can appreciate your problem. – Wahela


Only Half the Story

Re: 10 “Healthy” Foods That Are NOT Fibro-Friendly

I was intrigued to read your article about the top 10 'healthy' foods and what effect they may be having on me (I have Fibromyalgia). But after reading to the the end, I now feel very confused! I have quite a limited diet as it is, I found in the past that I have problems with quite a few foods and food groups but more than anything I find it extremely difficult because I'm so thin and only weigh 38kg (6st 10lb). So I have a lot of problems trying to work out meals, make sure I have enough food and eat the right kinds of things.

This list tells me foods that could be causing me problems but with no suggestions of alternative foods or meal ideas! I just feel it would have been a lot more helpful with at least some alternatives suggested. – willow78

Editor's comment: You make an very good point. I asked Sue Ingebretson, the author of this article, to respond. Here is her reply:

"By adding IN the healthy foods that provide us with abundant nutrients, and taking OUT foods and ingredients that are creating a continuous challenge for us, our bodies have a chance to heal. The goal is to give the body the environment to do what it does so well. The body is uniquely designed to heal! That's the exciting news.

“The other exciting news is that when we shift toward foods that are less processed and natural, we can discover limitless combinations of healthy foods to support our needs and our desires. 

“Because I've gone through this myself, as well as guiding my clients through this same process, I see that this healing process happens in three approximate phases. Some people stay in phase one or two for a long period of time, others go right to step three. We're all different and there's no right or wrong. 

“The first phase is to generally increase healing foods and eliminate the foods that create inner chaos. This is the discovery phase -- learning what supports us and what doesn't. In the next phase, we continue adding in new healthy foods and find substitutes for foods you were accustomed to. This phase also may or may not include supplements that can speed up the healing process. Lastly, we find a healthy balance that will sustain us on an ongoing basis. There will always be new foods to add, and some to eliminate. Some foods that were once a problem may no longer be a problem when the body has had a chance to repair and rejuvenate.

“From my experience, once you begin to feel better, and find you have more energy, the benefits keep on adding up. The healthier you feel, the healthier choices you make. It's an upward spiral.

“To further support your healing journey, you may wish to review the following articles that detail healthy foods and snacks. These articles will give more details on what foods, exactly, can help to support your healing journey.

“We appreciate your comment and are glad you're part of the ProHealth community."

Here are links to the articles Sue was referring to:

The Fibromyalgia Diet: HELP! I Don't Know What to Eat

Fibro-Friendly Snack Recipes

6 Proven Ways Leafy Greens Pack a Powerful Healing Punch for Fibromyalgia

Do You Know Your Nutrition Type?

Why Being Fat-Fearful Launched My Weight Loss Journey

How Gluten Issues Are Connected to Fibromyalgia

Top 12 Gluten Myths That Are Dangerous to the Fibromyalgia Community

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Article Comments Post a Comment

Video: What It Feels Like to. Live With Fibro
Posted by: Tinkwink
Jul 5, 2014
This video brought me to tears. This is my life & though I have a hard time calling myself a survivor I guess I am surviving this terrible disease one day at a time. But there are so many days I want to leave this life & I'm afraid one day I might take my own just to be free. Kudos to all the people involved in making this video you did an excellent job! THANK YOU for your idea & taking the energy & time to make it.
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