I went to a course about fibro and the presenters (mostly doing research) gave us something to help us that I never expected to hear. Basically he said that because we are unable to do things during certain days, we tend to try to 'catch up' when we're have a good day. He said this is the worst thing we can do as we tend to overdo and cause another bout of flares. His advice was to 'try' to do 'something' each day and not let it build up so much. Avoid overdoing it.
I used to keep it to myself as after a while it felt and sometimes still feels annoying saying the same thing over and over that I am in pain or I am having a fog or I am so exhausted beyond my years. It can be challenging explaining these difficulties to someone who just doesn't really understand. After a while some might not even take you seriously. Beyond the odds, be honest. Be straight forward. Sometimes being honest about what you are going through is the best therapy, even when persons seem to not get it. Atleast it can never be said they never knew or they were not aware. You may even be surprised. They may not understand the depth of what you may be going through but they understand enough to know you hurt and will stand by you anyway, be a listening ear, or give that well needed hug.
We have a color system at home. This disease literally runs our lives. I have four children. We came up with a system about ten years ago of a ring with different color laminated sheets. Red: leave me alone, Yellow: emotionally fragile but moving, Green: hurt, but can do, ask your questions. Blue: Good day: chances are I can do what you need. Pink: Feel great and need help to get caught up from Red, yellow and green days.
I know this sounds weird but it saves hours of conversation, misunderstanding, tears, and helps unify the family to understand. They are so good at it now they will change colors if they notice before I do that I am regressing by end of the day.
Since sending a reply and special help to each of you would push my need for emotional support over the top of the scale, I can only share what has helped me. Please know my heart understands.
I am now 79 years of age and started with Fibro at age 36. The Doctors sure didn't know what to do about it back then. They are still mystified, somewhat, to this day. (1) For sleeping, I have used a sleep pap machine for the past 6 years. I get restful deep sleep. One needs to do a sleep study to know if it's a good set up for you.
(2) Keep communicating honestly with your Doctors. If he/she doesn't listen look for a specialist, if possible. (Be careful of medication changes!) Three weeks ago I ended up in the E.R. twice in one week with major panic attacks because of a med change. I am much better now and doing well. Thankful, I am!!
(3) Watch the type of foods you eat, as some cause allergic reactions. Example: Over the years I have learned that potatoes need to be red or gold not white. Grapefruit needs to be pink not white. NO Avocados, as they are green and when I tried a couple they set off the pain right away. Tomatoes are best yellow not red. I recently learned that certain foods do affect arthritic individuals with additional inflammation. Watch the acid content of foods. I manage, lettuce, colored peppers, (no green), celery, cucumbers. Just experiment. You will know.
(4) This world with its constant bad news and immoral behaviors, that most seem to live by now, including our supposed leaders, is deeply affecting all the world's societies. Take a loving, non-judgemental look at why God's Word teaches us to keep the 10 Commandments. If all humanity would live them what a Great World we would have.
(5) And yes, when I really need comfort and kindness, I do Pray and call out to our Loving Father God. (This is a personal situation for each of us.) I've lain in my bed when at my lowest, and in such emotional pain, crying out to Him to "Please, please hold my hand" For me, I am so grateful because He is there. I am calmed. Within a few hours, someone will call and spend a bit of time just talking. Reach out when you are able, and when sharing look for ways to encourage others even when not feeling up to par. It helps me to treat others with humility, kindness, and respect! Everyone has something to deal with.
(6) Keep on keeping on everyone. It's not an easy road at times. Many hugs for comfort and understanding. Great Gram Dara Schneider
@DebrorahCampbell, One reason you're husband can tolerate his pain more is because he doesn't have fibromyalgia. People with fibro have more pain. It's not that we THINK we hurt more...we actually do! We have three times as much Substance P which relays pain messages and half as much Substance H which send helpful things like endorphins. So do the math... three times more pain, 1/2 help to fight pain. We actually hurt more! In addition we also have more Schwann cells which also relay pain and there's another nerve in blood vessels but I forget what they're called, that also relay pain, and guess what? We have more of those too. So...get articles about those things and share it with your husband. Also, he has one spot to ignore. You have your whole body. Our spine helps filter out most of our pain signals, but when we have soooooo much pain being relayed all day every day, our spine becomes overwhelmed and more and more pain messages slip through. Therefore, once again, being Fibros force our spine to fail at it's filtering job. That's why I keep saying we all need to read the research and learn about why we have fibro so that we can understand better, have more patience with ourselves and defend ourselves to others. I know getting our families to read this information is hard, but at least we can prove to them that it's real!
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