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Looking for fibromyalgia buddies
  1. #1
    Crystalclear651 is offline Senior Member
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    Smile Looking for fibromyalgia buddies

    Hi there, I have been dealing w fibromyalgia since my mid-20's n now I'm 30. I'm currently getting off of suboxone (with the great ppl of the Need to Talk forum) and could use some fibro buddies. Maybe we can share our backgrounds, what's helped each of us med-wise, alternative therapies, other diagnosis, hobbies, etc. Could also be a support to one another?

  2. #2
    MP5
    MP5 is offline Member
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    Hey Crystal. Funny, I just searched the site looking for fibro info for ya, and found this thread. I hope some people chime in with some good advice. I'll keep poking around and see if I can find anything.

    Mike
    Crystalclear651 likes this.

  3. #3
    Robert_325 is offline Retired
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    Quote Originally Posted by Crystalclear651 View Post
    Hi there, I have been dealing w fibromyalgia since my mid-20's n now I'm 30. I'm currently getting off of suboxone (with the great ppl of the Need to Talk forum) and could use some fibro buddies. Maybe we can share our backgrounds, what's helped each of us med-wise, alternative therapies, other diagnosis, hobbies, etc. Could also be a support to one another?




    Crystal .... I started out messing with forums in the 90s when I moderated an autoimmune disease forum. I have four autoimmune disorders including Fibro, Rheumatoid Arthritis, Raynaud's Phenomenon and APS (Antiphospholipid Syndrome). So I have dealt with lots of autoimmune problems. Had five knee operations from injuries playing racquetball competitively 25 years, deg disc, three blood clots, the list goes on.

    My addiction problems with RX meds started out due to injuries and autoimmune problems. I haven't taken any opiates in ten years now, haven't even taken any ibuprofen in almost a year. I am retired, largely due to the pain I went through when all of these problems put me in a wheelchair in late 2000. God blessed me being successful in business and I retired at 50. By 2002 I was taking over 100 pills of some kind a day including 1000mg a day of Roxi IR and tons of other trash. I had three blood clots from the APS in four years. Went from a wheel chair to a walker to a cane over a period of about two years and now I have been clearing my property cutting down trees with a chain saw and have done every single bit of the work myself. I swim daily in my pool, I do have to take a muscle relaxer on occasion for the fibro and all the combined autoimmune problems leave me with sleep disorders so I take ambien at times when I can't sleep. I take a calcium channel blocker to dilate my blood vessels and aspirin to fight off more blood clots and I take a ton of vitamins and supplements. Gone to that from taking 16 prescriptions about ten years ago. That is it, I've hung in there and worked myself back into shape by being in the sun and not being sedentary. That helps me the most, plus I pray a lot! If I stop moving and praying I know that would be it for me.

    Met my wife on this forum in 2008, we will celebrate our second anniversary in July of this year. So there is life after Fibro and other problems if we don't lay down to it, have a positive attitude, all that good stuff.

    I listen to some meditation tapes to help me sleep some nights, got that from my wife Melinda who also has Fibro. But we have fun, live in the country conservatively, but do what we want, go to church and I give thanks to God for the fact that I've progressed like I have instead of going the other direction with my health as so many others do with a bunch of problems. I never liked giving up! Melinda has been a huge motivation for me too! She is a doll! That's a little about me, pretty boring I know. lol
    Last edited by Robert_325; 06-24-2012 at 08:29 PM.
    I am not a dr. My statements are based on years of experience and related education. Consult with the professional of your choice regarding matters of concern.

  4. #4
    Robert_325 is offline Retired
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    Also very important! Autoimmune problems create so much inflammation in our bodies. I primarily eat steamed or raw veggies, fruit, oatmeal, nuts, I love beans for protein, I haven't eaten any meat in almost a year now, had to give it up. I snack on things like granola, raw almonds, some cheese, but I eat nothing with white flower or refined sugar. You would be amazed what that does for our bodies! God bless.
    I am not a dr. My statements are based on years of experience and related education. Consult with the professional of your choice regarding matters of concern.

  5. #5
    Crystalclear651 is offline Senior Member
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    Hi mike apprec u lookin into this for me...wasn't sure where to post this so I thought this would do for now. n Robert, thx for Checking out my new thread. I def could use some advice from ppl who have some pretty difficult to deal with health issues but it's so wonderful to hear that you/me can do this wo opiates! I recently saw a nutritionist n got gluten out of my diet which def helps the tummy pain. Right now I'm doing an elimination diet w her (oh n what a joy this diet is, lol), drinking kale berry smoothies in the morning...well I guess it's an acquired taste...starting to get used to new diet. I also take fish oil n some other anti-inflammatory vitamins to help me now. How did u get through the tough days, like this past week I've had pretty intense neck n back pain. Forced myself to walk around a festival today n was more sore afterwards. I was on a roll this past month w exercising...maybe I'll just push myself this week as an experiment n c if I feel worse or better. I'm also taking neurotin n ambien as needed cuz I have serious sleep issues for last 6 yrs...maybe a muscle relaxer is what I need to add next...hmmm something to think about.

    Thx Robert for sharing that, I'm open to anything besides taking opiates n u gave some great advice. U really have been through a lot yourself! I know u hear it all day long but your dedication to this site is a dream come true...along w so many others, us going thru this now we need the experts advice n support n we all feel blessed to have u n the vets walk us through those difficult times n praise us for a job well done. It means a lot, I see it helping so many n myself. Ok just wanted to say that real quick. If it wasn't for u mike, i wouldn't b where I am today n I thx ya for that. Big hugs, n blessings to u both.

    Yes, I like doing the guided imagery meditations at night - def helps to relax me. Need to b more consistent though.

    Ok I'm rambling, it's 2 am here n can't fall asleep!

    I'll let ya guys go so I don't start talking gibberish.

    Talk soon, xoxo
    Crystal

  6. #6
    mysteryilnesshelp is offline New Member
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    I would love a fibro buddy! As far as treatments My rheumatologist is testing me for Rheumatoid but assuming that comes back neg (which I this it did since she never called) I will prob be staring PT exercise program to keep the fibro in check. I can't go on any meds because I am on way to many already and looking at more for other problems right now so thats not an option. Anyway I am happy to be your fibro buddy so message me anytime!

    love&hugs
    A
    Last edited by ddcmod; 07-27-2012 at 05:39 PM.

  7. #7
    Crystalclear651 is offline Senior Member
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    Thx for the responses, haven't checked this page in awhile n it's nice to hear I'm not alone! I'm going to start PT up again soon. I've also been tested for a lot of stuff n have some other health issues as well. Going to a dr soon to get a neck/head MRI n to be checked for MS n Chiari Malformation. I guess I need to get past the fact that I have to deal with this n am coming to terms with it. It's been difficult going from super active n healthy to dealing with chronic pain but I find having a support system is invaluable! I recently started with a chronic pain anonymous group, which uses a modified version of NA/AA and it's been very helpful. I'm not sure where to access your blog...let me do a little search n see if I can find u Allison. Thx everyone for your support and sugge
    Last edited by ddcmod; 07-27-2012 at 05:39 PM.

  8. #8
    Sherri1960 is offline New Member
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    I have fibro for four years. I haven't found much that helps me. I'm still looking. Most meds upset my tummy or race my heart and gives me anziety. It's hard finding a Dr. that will listen. Even though I have been at the same clinic for four yrs. They are in too big of a hurry to get to the next paicient. I think they over book appoitments. I've tried most of the meds out there. They just took me off hydrocodone cold turkey. After four yrs. I took it as perscribed and less. I saved some back because I knew the day would come they would do that to me. Now I'm wondering should I wean off of them myself or just face the cold turkey. I'm in day three. I took one in the morning before my appt. and then one before I went to bed the next night none yesterday and none so far today. I was on 10/5.They put me on altram 2 four times a day. It raced my heart really bad. So I take one.3 to four times a day. He just gave me ativan. 1 twice a day for 2 weeks. then 1 for 3 weeks then a half till gone a day. They knock me out so I take one a day so far. I can't do my daily normal things as I use to. I'm doing a lot of reading on line to see what has helped other people. I'm thinking of a fibro pain specialist. Has anyone had any luck with them? What seems to help you the best. Good Luck in your life with fibro.

  9. #9
    Sherri1960 is offline New Member
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    It's been a week now. still taking one hydrocodone a day. sometimes none. Still feeling pretty bad. I feel nausious. moody. Alone and in pain.I wonder
    how long the withdraw will go on while tapering off in this way. Heartburn is bad even though I take pepcid. I'm gonna help my daughter can tomatoes and grape jelly today. What a wonderful way of spending time together. I just wish I felt up to it. Haven't heard from anyone here on this sight. I wish you all the best.

  10. #10
    Crystalclear651 is offline Senior Member
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    Ru still around Sherri? It's been awhile n I've been dealing w some issues of my own. How r things going for you now? Did you find a new dr ? What a jerk for him to do that to you that way. I can understand ur frustration w drs, I'm kinda going thru some issues of my own. I got burnt out of dealing with their rude, uncompassionate sp? Behavior. Well if u are still around reply n we can chat. Take care girl

    Quote Originally Posted by Sherri1960 View Post
    It's been a week now. still taking one hydrocodone a day. sometimes none. Still feeling pretty bad. I feel nausious. moody. Alone and in pain.I wonder
    how long the withdraw will go on while tapering off in this way. Heartburn is bad even though I take pepcid. I'm gonna help my daughter can tomatoes and grape jelly today. What a wonderful way of spending time together. I just wish I felt up to it. Haven't heard from anyone here on this sight. I wish you all the best.

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