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chronic pain and myalgia

Nov 23, 2014 9:16 AM

Hey wonderful people. Struggling with the day to day at the moment (as, it sounds, a lot of you are too). I was diagnosed with Me and fybromyalgia and chronic fatigue syndrome about four years ago now. Although my fatigue levels are under control because of pacing, I recently came off all my pain meds because of bleeding somewhere in my stomach/bowels and stopped eating wheat.
I do have the occasional wheat based food and it makes me really bloaty and farty and any beer or lager leads to bleeding so I think I've identified that culprit . Anyone else tried thisapproach?
If so, I'd love to hear your comments.
I'm getting alot of pain again now so I'm thinking of upping those bad boys back up to the prescription only types, but I'd love your ideas on diets etc as I want to domasmmuch as possible to make it all easier to cope with. Looking forward to your comments

Abbi

Nov 23, 2014 12:24 PM

Hey there Abbi- for me, I have tried gluten free ( no wheat, etc) but it didn't really make a big differene. Everyone is different though!! I have more luck with watching my sugar intake. I try to eat organic and whole foods - veggies and protien. But all in moderation with small amounts of chocolate and ice cream!

Nov 23, 2014 4:56 PM

I do have sugar in my tea... I'll cut it out and see how ingots. Thanks for the advice

Nov 23, 2014 6:44 PM

Good info. I love sugar. This would be an adjustment but so worth it if j could cut down on my pain. I kinda knew that sugar was not good but o guess I was in denial. I seem to live my life in denial...oh well...

Nov 23, 2014 7:10 PM

I stopped eating wheat, use very little sugar and stopped drinking caffeine. Weather changes, fun activities I always loved and going visiting make me nervous now. I don't want to ruin other people's day if I can't function and I have to skip meds to drive, etc. There are not too many things that make me happy any more. I've had a neurostimulator implant and it broke and I had it replaced four times and now it's broken again and my neck is so bad, it can't even be taken out without great risk of being paralyzed. I had a total of 28 surgeries in the last 17 years to try to fix me and/or thwart the progression of my diseases. I hope you all find some kind of relief. At least remember that as long as we have this app then we are never alone and can always speak to someone who understands firsthand what you're dealing with. Stay strong and keep the faith!!

Nov 23, 2014 11:13 PM

I removed anything made from sugar cane, artificial sweeteners, eggs and milk and that has helped with both my pain and stomach issues. Sugar cane products include all white sugars, brown and golden sugars, molasses, rum, glucose, fructose, sucrose, dextrose, sucralose. Honey, agave and coconut palm sugar in small amounts seem ok. Elimination diets are hard but well worth finding the problem foods. Then you can at least make an educated decision when it comes to eating those foods

Nov 24, 2014 10:59 PM

I've been eating low carb and gluten free for a long time now. I started hoping it would help me feel better, but it didn't. I lost the weight, but didn't help my inflammation and pain. I hope it helps you. It does help some people.

Nov 25, 2014 5:52 AM

It really is comforting to hear all your stories and be able to understand and to know that I am by no means alone with my pain and crazy thoughts. I am currently extremely nervous about an upcoming trip with my children. Every year in the past we hike a 7/mile trail which passes by waterfalls and up to the top of a mountain where you are up there looking down at the flying birds. It is a peaceful wonderful hike which I wouldn't want to miss. Just talking about it I feel peace. But at the same time I am extremely anxious. I can't let my kids down. This will be a big test for me. I am not letting my stinking fibro dictate my life.

Nov 25, 2014 6:54 AM

Blessed- I am feeling the same way! I am traveling this March and refuse to let my fibro stop me! I am going to try to rest and do lots of healthy things this time while I'll travel. Lots of rests, water, stretching, and protien on your hike! Also, can you plan a rest day the day after?

Nov 25, 2014 1:06 PM

Love it jesswoo! We will not be defeated! We can strong together. I feel like a yoyo sometimes though ...either strong like a lion (when I am not in horrible pain) or like a mouse...when suffering. I just try remember that there will be tough days but also days of peace... I am going to enjoy my hike and the time with family even if I pay for it later. It will all be good...and to answer your question about some relax time after the hike...unfortunately not. That's OK though.

Nov 25, 2014 2:40 PM

You are all so inspiring. And then I realized we are all that strong. We all push through so much pain, physically and emotionally and we just keep plugging along. It's great to be able to connect with people who acknowledge and understand how hard that is sometimes. I'm a medical transcriptionist and my shoulders, back, elbows, wrists, hands and fingers hurt so bad right now but I'm still moving so I can still type. My skin hurts today and it is hard to sit on my desk chair. My back and butt hurt!! But I'll soak in the tub tonight and then enjoy my husband's company. H e is trying so hard to understand. Then go to bed and tomorrow get ready for Thanksgiving. We always have something to be thankful for. I am thankful for my rheumatologist. She has officially diagnosed me with fibro, lupus, OA and Sjoghren's. It helps to have her validate all of this. I am thankful for my husband of almost 20 years who says this is a journey we take together, my daughter and her husband and my son and my wonderful grandson. I am thankful that I always seem to be able to take one more step even when I don't feel like I can. I am thankful I have found all of you.

Nov 26, 2014 10:37 AM

Justbcuzz, you have a great attitude and that is part of the battle. My last post was a bad day, today, not much better but we're all in this life together. Have a blessed Thanksgiving EVERYONE and I hope you find peace in your day and time to smile with your loved ones.

Feb 24, 2015 1:25 PM

Hi I cut out any greasy foods,no take aways or fried food and it made a big difference, I'm on maximum painkillers and now can't get off them, I've tried everything and every type of massage or herbal remedies. Thai massage does relieve the pain around the shoulders.fybromyalgia flares up when weather is bad too.I'm new to this too and hopefully meet other people in same situation

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