Anyone wiht fybromyalgia?

Options
Just thought I'd get a few friends who also have the dreaded FM. Would just help to know what you are doing for exercise and food and whatever comes to mind. How you take care of your house, kids, manage your pain, sleep and all that.

Replies

  • Pamshaw2
    Pamshaw2 Posts: 6
    Options
    Yep,my DX as well. I thought that the pain I was having was due to my wt. My doctors thought the same thing because much of my pain appears back related at first glance. My doctor has been running test..., then wanted me to start with fitness pal. 2 weeks into the diet I get the DX of FM. Dang! I thought if I could just lose a quick 20 lbs I would feel good enough to exercise (curses foiled) I have started on medication which helps a good bit with my hips, legs, and feet. The new medication also helps with my eating because it causes my stomach to roll and do flips throughout the day. This was not the way I planned to lose wt.

    I get up 30 minutes before my family because it takes me that long to be able to walk or move enough to be able to cook breakfast. I find i can't lift, or bend much but I am able to move about if I rest often. I hope the wt. lose will have an impact but it is too early to know yet.
  • Tondra2
    Tondra2 Posts: 21 Member
    Options
    I don't have fm but I was diagnosed w a nondescripitive connective tissue disorder. I have days where I can't walk because everything on my right side hurts. My dr really couldn't help me so I have done my own research. I started juicing to help w fatigue. Made a huge difference and gave up animal products. I read a lot of articles saying it can increase pain. It's amazing how much my pain has decreased. I was diagnosed in dec and started talking to people and doing my own research in feb. Im hoping to ease my way back into walking. I use to do 2 races a yr. I've been able to walk a mile twice in the last two weeks. I have some pain but not as bad. If you want you can add me as a friend. Hopefully this will help you some. Unfortunately I've learned you have to take all the info people give then decide what will work best for you. Good luck!!!
  • numee2012
    numee2012 Posts: 39
    Options
    hi guys i was told i have FM on Thursday this week and to be honest i was pleased to get a diagnosis as i have been training, eating well and still feeling like i had been run over by a bus days later and thought it was just me so to finally have a name is great.
    I have been prescribed Amitiptyline to take before i go to bed.
    How is everyone managing their FM and what do you try and avoid,
    Please add me :O)
  • Jelaine56
    Jelaine56 Posts: 88 Member
    Options
    Hi, I have FM and have had it for at least 36 yrs.. It's just within the last 13 yrs that it's been getting worse.. In February, my dr said I really should lose some weight. That was the last thing I wanted to hear. But starting in mid-April I started walking.. Slowly at first but now I am trying to walk at least 2 miles 5 times a week. I have even thought about jogging.. I still hurt when I exercise, but really it's not as bad as when I don't. I really do think walking has helped improve my overall being.. Today I am sitting here trying to decide if I want to walk or not, and I am hoping I will.. I have lost about 13 lbs so far and I don't want to give up now.. If you want to be friends I will do my best to be supportive..
  • angstandvexed
    Options
    Hi,
    I have fibromyalgia and rheumatoid arthritis. Believe me I know how much it hurts. I am not a medical professional, so I cannot give you medical advice. I take 6 grams of omega 3's, 6 grams of niacin (not the flush free brand), enbrel, and pain meds. I take a multi-vitamin, and alot of collagen support also. The supplements allowed me to stop taking the methotrexate and prednisone. Even still I hurt, but overall it is alot better. Hope to hear back from you,
    Karen
  • Lynn_SD
    Lynn_SD Posts: 83 Member
    Options
    Hi, I have had fibromyalgia and osteoarthritis for almost 14 years. Been through most all of the meds but either not helpful or severe side-effects; a few made me gain a huge amount of weight. Many days I still feel like I've been hit by a bus when I wake up. It takes me at least 2 hours to be able to get up out of bed and I have nearly given up cooking.

    That said, I HAVE found a combo of different meds that make the pain tolerable most days. You will have to experiment with the guidance of your doctor to find what works for you. Maybe you will be lucky and be able to take the new FDA approved meds Savella or Lyrica without problems. I AM finding that the endorphins from the right kind and amount of exercise are helping decrease my pain levels; the problem is getting to the gym/pool at first! Try swimming, low-impact exercise, weights no more than twice per week. Avoid HIIT or any high-intensity workouts, avoid using bands (the eccentric muscle contractions make fibro worse) or extremely heavy weights.

    I have found that the main thing is you MUST reduce your stress levels. Pace out your activities, do away with what you can, make things easy on yourself. Also, work on whatever you need to do to get enough quality sleep.

    OP, I saw your post from 7/4 and have you considered that you probably have IBS (irritable bowel syndrome)? It goes along with fibro and mine flares up with stress, I then become very lactose intolerant and have the exact symptoms you were describing! I take an antispasmodic rx along with Imodium and a heating pad to tummy. Also I take the OTC lactase supplement if I am eating anything dairy during a flare of the IBS.

    I would see your doctor regularly, a rheumatologist is great if you can or a primary who will work with you to find the best medication combo. Ask for a referral to physical therapy; some of them even know how to do myofascial release (though not mine, unfortunately). Get deep tissue massages when you can; use a jacuzzi or hot bath when possible. Check and see if there is a Fibromyalgia or Chronic Pain support group in your area.

    I find that weather has a very strong effect on my fibro/OA pain level. If it is going to rain, the humidity goes up or it is cold, I will hurt much more. It helps me to know that it is the weather and nothing that I did. OH, get a heated mattress pad (better than a heated blanket) and some really good heating pads, they help a lot!
  • vrvbrown
    vrvbrown Posts: 2 Member
    Options
    I was diagnosed when I was 16 years old, during my Junior year of high school. It took forever for my doctors to actually figure out what was going on, since I was quite a bit younger than most patients they see. It took a million tests, and multiple doctors before I ended up at Children's National, where they finally came to a conclusion.

    At first, the pain was horrendous. It kept me out of school, and I avoided ever having to be contact with people. I was near impossible to wake from sleep, and had zero appetite. I was depressed, not from actually being in pain, but from not knowing how to deal with it.

    Now, three years later, I'm 19, and have just finished my freshman year of college, studying to be an opera singer. (Nothing, not even fibromyalgia, is going to stop my dream, lol!) The pain is manageable; lately, in fact, it hasn't been much of a problem. I used to be a dancer, and had to quit as it hurt too badly, but I'm slowly getting back into it. I do yoga, which helps quite a bit as well. I take Amitriptyline every night before bed, and Lyrica twice a day, along with a whole mess of other medications.

    I ended up on MyFitnessPal because the Lyrica has made me gain 40 pounds since I started taking it, without any change in my diet (granted, I had to stop exercising as much, but I'm getting back into it!). So...there you go! My fibro story :)