Friends with fibromyalgia

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Replies

  • raindropwishes
    raindropwishes Posts: 182
    Hi Ales

    I have fibro and C.F.S as well as other stuff. Feel free to friend me if you like.
  • fibrogirl
    fibrogirl Posts: 170 Member
    Bumping this up for you Ales to see if you get some more replies. You know you always have me too !! Anyone out there feel free to add me as a friend as I´ve had this for about 10 to 12 years now, it took an age to diagnose and was a relief to finally know what was going on.
    Luckily apart from a relapse last year I am doing really well, provided that I keep exercising, sleep well and cut out the crap from my diet. Now over the festivities I´ve felt pretty rough all because I´ve eaten and drank all of the wrong things. But I´m back on track and started exercising harder again so fingers crossed. I´m very lucky to live in a warm climate too, that certainly helps.
  • RobinShay
    RobinShay Posts: 53 Member
    Hi everyone!! I have Fibro and some days it has me. :) please add me as your friend. Thanks! Robin
  • aandawn
    aandawn Posts: 2
    Hi everyone. I have been dx with fibro and CFS for three years now. The thing that I have found to help the most is to not eat anything with preservatives in it. My rule of thumb is if I can't pronounce what is on the label or if it has more than 5 ingredients I don't eat it. Also I move around alot. I don't work out in a gym or anything, but I stay active as much as I can, even on bad days. It seems that when I hurt the worst doing simple streches help the pain. Sitting in one spot or laying in bed only causes me to get stiff. So no matter how much it hurts to move, I force my body to do so. In the end I am grateful for the short term bad pain, because it gives me some relief on the longterm pain of the day. When I am feeling good I do things like clean where I have to strech and bend. My husband says we have the cleanest house there is. lol.
    The one problem that I have been have recently that I don't understand is that my eyes have been affected. Some days like today I can see great, others I cannot focus on anything in front of me. When I try to look around on bad days I get horrible headaches. If I take my pain meds though I am able to see better. It is really weird and annoying. I wish it would go away. Do any of you have this problem? I am going to a specialist next week to see if they have any ideas as to why this is happening.
    Anyways,
    I am glad I found all of you.
  • kimiel51
    kimiel51 Posts: 299 Member
    Hi everyone. I have been dx with fibro and CFS for three years now. The thing that I have found to help the most is to not eat anything with preservatives in it. My rule of thumb is if I can't pronounce what is on the label or if it has more than 5 ingredients I don't eat it. Also I move around alot. I don't work out in a gym or anything, but I stay active as much as I can, even on bad days. It seems that when I hurt the worst doing simple streches help the pain. Sitting in one spot or laying in bed only causes me to get stiff. So no matter how much it hurts to move, I force my body to do so. In the end I am grateful for the short term bad pain, because it gives me some relief on the longterm pain of the day. When I am feeling good I do things like clean where I have to strech and bend. My husband says we have the cleanest house there is. lol.
    The one problem that I have been have recently that I don't understand is that my eyes have been affected. Some days like today I can see great, others I cannot focus on anything in front of me. When I try to look around on bad days I get horrible headaches. If I take my pain meds though I am able to see better. It is really weird and annoying. I wish it would go away. Do any of you have this problem? I am going to a specialist next week to see if they have any ideas as to why this is happening.
    Anyways,
    I am glad I found all of you.
    I've been having dry eye problems! Weird!
  • redbird99
    redbird99 Posts: 298 Member
    I was diagnosed with fibromyalgia in June 2010 and had to quit teaching. My doctor told me I had had it for quite awhile - about 6 years. I applied for disability and was approved in 2 months. There are days that I spend in bed and days where I feel almost normal. Pain is a constant, some days less, some days intense. I have been using a CPAP since 2009, which helps me rest at night, but fatigue is still a problem. And so on and so on...everyone with fibro can pretty much repeat the list!

    "Some days like today I can see great, others I cannot focus on anything in front of me. When I try to look around on bad days I get horrible headaches. If I take my pain meds though I am able to see better. It is really weird and annoying."

    Yes, I have problems with eye strain and headaches. My optometrist and my doctor both say there is nothing wrong, so why does this continue to plague me? Pain meds and laying down in a dark room has been helpful, but hasn't solved the problem.

    I just try to be upbeat and do what I can. On the days when I feel pretty good, I try to catch up on the cleaning that I neglect when I feel bad. What an awful thing to look forward to - a chance to clean house!! LOL!

    And I do have a sugar craving! I thought it was just me!
  • kimiel51
    kimiel51 Posts: 299 Member
    There's a group for those of us with Fibromyalgia here! I just joined. Check it out!
  • ales1979
    ales1979 Posts: 269 Member
    Bumping this up for you Ales to see if you get some more replies. You know you always have me too !! Anyone out there feel free to add me as a friend as I´ve had this for about 10 to 12 years now, it took an age to diagnose and was a relief to finally know what was going on.
    Luckily apart from a relapse last year I am doing really well, provided that I keep exercising, sleep well and cut out the crap from my diet. Now over the festivities I´ve felt pretty rough all because I´ve eaten and drank all of the wrong things. But I´m back on track and started exercising harder again so fingers crossed. I´m very lucky to live in a warm climate too, that certainly helps.

    of course I know sweetie :) you're a great support to me :D xxx:heart::flowerforyou:

    Wish I lived in your climate too! I'm sure my aches would be chased away :) xx:heart:
  • ales1979
    ales1979 Posts: 269 Member
    Hi everyone. I have been dx with fibro and CFS for three years now. The thing that I have found to help the most is to not eat anything with preservatives in it. My rule of thumb is if I can't pronounce what is on the label or if it has more than 5 ingredients I don't eat it. Also I move around alot. I don't work out in a gym or anything, but I stay active as much as I can, even on bad days. It seems that when I hurt the worst doing simple streches help the pain. Sitting in one spot or laying in bed only causes me to get stiff. So no matter how much it hurts to move, I force my body to do so. In the end I am grateful for the short term bad pain, because it gives me some relief on the longterm pain of the day. When I am feeling good I do things like clean where I have to strech and bend. My husband says we have the cleanest house there is. lol.
    The one problem that I have been have recently that I don't understand is that my eyes have been affected. Some days like today I can see great, others I cannot focus on anything in front of me. When I try to look around on bad days I get horrible headaches. If I take my pain meds though I am able to see better. It is really weird and annoying. I wish it would go away. Do any of you have this problem? I am going to a specialist next week to see if they have any ideas as to why this is happening.
    Anyways,
    I am glad I found all of you.

    Hi there Dawn!

    I'm starting to force myself into things again too, now the holidays are overI always feel the winter is gonna be over soon and that gives me a lot of hope!

    I'm gonna get a grip of my flat/ apartment this year for sure! 15 mins at a time with FlyLady! I'll get it done! :)

    Will add you as a friend too!

    x
  • RILEYRED
    RILEYRED Posts: 647 Member
    I have been battling fibro for about 5 years. I am always looking for new treatments, meds. Does anyone know the name of the Fibro group on here? Thanks, and good luck to al of you. Red
  • morganadk2_deleted
    morganadk2_deleted Posts: 1,696 Member
    I don't have FM , but i have friend who does, i see her pain and feel frustrated for her

    there is a group on here if anybody is intrested.

    http://www.myfitnesspal.com/groups/home/1042-fit-fabulous-fibromyalgia
  • ales1979
    ales1979 Posts: 269 Member
    I was diagnosed with fibromyalgia in June 2010 and had to quit teaching. My doctor told me I had had it for quite awhile - about 6 years. I applied for disability and was approved in 2 months. There are days that I spend in bed and days where I feel almost normal. Pain is a constant, some days less, some days intense. I have been using a CPAP since 2009, which helps me rest at night, but fatigue is still a problem. And so on and so on...everyone with fibro can pretty much repeat the list!

    "Some days like today I can see great, others I cannot focus on anything in front of me. When I try to look around on bad days I get horrible headaches. If I take my pain meds though I am able to see better. It is really weird and annoying."

    Yes, I have problems with eye strain and headaches. My optometrist and my doctor both say there is nothing wrong, so why does this continue to plague me? Pain meds and laying down in a dark room has been helpful, but hasn't solved the problem.

    I just try to be upbeat and do what I can. On the days when I feel pretty good, I try to catch up on the cleaning that I neglect when I feel bad. What an awful thing to look forward to - a chance to clean house!! LOL!

    And I do have a sugar craving! I thought it was just me!

    Hi Redbird!

    so sorry to hear you are having problems with your eyes, I think its quite a common Fibro symptom. I have to keep a pair of sunglasses handy because even the daylight affects mine sometimes (especially the 'white' cloudy skies we seem to get here in the UK, during the winter). Other friends of mine with fibro also wear dark glasses a lot, especially in artificial lighting!

    Hope this helps and I'll add you to my friends list!

    xx
  • ales1979
    ales1979 Posts: 269 Member
    I have been battling fibro for about 5 years. I am always looking for new treatments, meds. Does anyone know the name of the Fibro group on here? Thanks, and good luck to al of you. Red

    You beat me to it Red! was just about to ask! lol!!
  • nancyinfernley
    nancyinfernley Posts: 66
    how do i join the friends with fibromyalgia group? i would like to. i was diagnosed with lupus back in 04. but i never felt like that was really what it was. i thought i had both fibro and lupus. then i finally went in front of a judge back in march of last year. the judge told me i had either one or the other but couldn't have both. so i believed this.

    i finally got my medicare/medicaid and went to a RA who asked me all the lupus questions and i only had symptoms that were both fibro and lupus. she said, "i really don't think you have it!" she ran my titers (sp?) after my ANA's came up positive and they were negative. now i'm 52yrs old and have been in pain all my life so i'm used to it. so i can deal with fibro. but not having lupus has given me a whole new lease on life and i want to lose weight, enjoy life and strengthen myself up any way i can. i figure if i'm gonna be in pain anyway i might as well try to work with it.

    so i want to join a support group, to be supportive of others and to get support. any suggestions??? i'm in fernley, nv. that's 30miles east of reno, nv.
  • adelareto
    adelareto Posts: 20
    Yes!!! I crave candy....not chocolate but sugar filled candy!! I just tried sugar free life savers and they help but don't eat too many they can cause diarrhea. So far that is the closest thing I can find that will curb my craving.
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