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Anyone out there with Fibromyalgia?

Discussion in 'Physical & Sexual Health' started by AmaranthHart, Aug 26, 2012.

  1. AmaranthHart

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    I've had fibro. for over 2 years now (I'm 22). I'm curious how many of you also have it and, if so, how do you cope with it? What meds work for you? What exercises, diets, etc. have helped?
     
  2. Romi

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    I'm gonna tell you right now...coping with it...there is no coping with it. Haha...

    I'm 24 and I've been living in constant pain since my freshman year of uni. That was back in 2006. So...6 years now. It's atrocious. It is the absolute worst thing, and I would not wish this on my enemy. I am really sorry to hear that you are suffering from fibro. Not having a cue, or any way to get rid of a life full on constant pain, is highly taxing.

    As far as medicines that work...I have yet to find one. Nothing works for my migraines. Nothing works for my joint or muscle pains. Sometimes I can take various medicines and on a good day it might help ease the pain a bit, but nothing ever really gets rid of it. But I say I take medicines, I'm talking potent stuff. You won't find Tylenol and Motrin by themselves in my cabinet.

    One thing that I've found that helps a bit as well, and this may just be particular to my case since I was struck by lightning, but...electropuncture helps to ease some of the pain. Electropuncture is basically acupuncture that is accomplished with volts of electricity rather than by needles.

    As far as what diets have helped...I wish I could tell you. I know I tried to impliment a diet strictly based on what would help me, but in the end I know me, and I end up eating whatever the hell I want to eat anyway. But try and steer clear of sugars and things like potatoes and bread. That's where I failed. Because I love potatoes and bread. :\

    I have a page tabbed somewhere about particular foods you shouldn't eat if you're a fibro patient. So when I locate that, I will definitely post it on here. Oh yeah, but you should try to do Gluten Free foods if you can. I know a lot of restaurants now have gluten free options. Ours does. So ask if you ever go out to eat.

    Exercise wise...Yoga is a good way to go. You can keep to the floor positions if you have issues balancing. I know that I tend to keep on the floor just because my knees and hips really can't handle the stress of my own weight most days. It's pretty bad when !28 lbs is too much for your legs to hold. :\

    Here is a video that includes some different poses you could try. I know they sometimes help me. For more just look in the related videos on the right.

    [youtube]RreRNmPQoL4[/youtube]



    Also, for those of you looking at this thread that might not know anything about Fibro...this is a clue as to our pain....


    [​IMG]

    [​IMG]
     
  3. Revan

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    I am worried about getting it some day....I don't know if it's genetic, but my mother does have it, so if anyone can tell me if it's genetic that's help me a bit...
     
  4. Romi

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    There is certainly evidence that genetics play a part in fibromyalgia. My mother has never been diagnosed with it, but let's face it...she and I are like two peas in a pod. If she doesn't have fibro then I'm certainly not queer.

    However, by me saying that there's a hereditary link with fibromyalgia, that does not mean that are you due to acquire it in the future. Actually...with you being 24 already, if you don't have it, I'm tempted to say you've gotten lucky. Still...don't wanna jinx ya there.

    Besides, as of yet, they haven't identified exactly how it's transmitted through family members. Eek. Trasmitted sounds bad. But you get the idea.

    Still, I raise my glass to you and your good health.

    Also, just because you may not have it now doesn't mean you should ignore taking care of your body. After all, you've only got one body. It's just like taking care of a car. Keep it polished, fueled, regular check-ups, you know the drill, it'll last you longer. :wink:
     
  5. Gen

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    Oh my, thank you for this, I was completely unaware. I cant even slightly compete, but I do know the feeling of being in constant pain. I have had constant headaches and migranes for the entirity of my life. Doctors have not be able to diagnose as a known condition, however, they believe its attributed to my brains difficulty with resting periods. If you could imagine that heightened feeling that you get when you are shown all of the cards at the start of a memory matching game, that it essentially the amount of analyzations my mind naturally stays at. If I, literally, do not use enough brainpower, I could go into pyschotic brakedowns.

    However, I am fairly human so being like this is quite painful. My only option is to take medication that could make me suicidal(As well as many other things. Brain meds are no joke :frowning2:), or deal with the pain. I'm just hoping that it doesnt continue to get worse as I get older. So, I wholeheartedly commend you.
     
  6. abbey steven

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    i can imagine your pain, my uncle also suffer from Fibromyalgia. he got sensitivity pain and sleeping disorder. first thing you should consult a doctor and follow his directions. there are many more things which also use to get rid of this disease is energy supplements, psychological treatment and nutrition by foods
     
  7. Romi

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    I hate to tell you this, but there is no getting rid of fibro. You can do things to lessen the pain, give yourself some temporary relief, but there is absolutely no cure for patients with fibromyalgia.

    On another note...I wouldn't call it a disease. Yes, us fibro patients are sickly and whatnot, but it's not a disease per say. A disability? Oh hell yes.
     
  8. Eleanor Rigby

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    I've been living with a fibromylagia since I was 15, that makes it 17 years now and I'm still here :slight_smile:
    I'm one of the lucky ones though, some medicines really help. But what helps even more is to learn how to live with it and to pay attentions to the little signals your body is sending you.
    I have to have a very very regular life (which isn't always easy). I sleep a lot (8 to 9 hours a night, it's what I need if I want to be able to function). I have a diet (I don't eat dairy product, chocolate, any kind of alcohol but red wine on occasion, I avoid read meat and plain sugar). I have a wonderful acupuncturist and homeopath doctor who is helping a lot. I try to have a moderate but regular physical activity. I always have a scarf on hand and my medicines in my handbag, several hot bottles at home, a cervical support cushion to sleep and memory form foam cushion for when I'm having a pain crisis. And I'm letting people know what's going on.
    But all in all, I'm pretty much living a normal life. The pain is manageable most part of the time.
    Take care every one (*hug*), Cécile
     
  9. jeffersonM4367

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    I have Fibro as well as RSD, reflex sympathetic dysfunction. This means I have the muscle AND nerve pain. Mine arose after a car accident in 2005, and I agree there really is no coping with it. I take daily: 3200mg neurontin, 10 mg oxy (3 times a day), 100mg nortryptilne, 10 mg Baclofen (3 times a day), 60mg Prozac, and I get injections 1 time a month. My friends and family are tired of hearing that I hurt so I just shut up and listen to them complain about every day aches and pains.
     
  10. seeksanctuary

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    I am 24. My fibro set in when I was about ten years old, and got worse until it hit full force when I was about 17. I couldn't understand why I was in pain all the time. I got diagnosed with it when I was about 20-something.

    Coping... I try and stay distracted. I try and lift light weights, walk and do some yoga. LIGHT yoga. I don't take meds at the moment, but I am considering them because my pain is getting unbearable. :/ The best diet I ever did was a gluten-free diet that cut back on sugar and avoided corn, tomatoes and other nightshade family foods.

    I think that it's possible for some people to learn to cope, but most of the coping has to be done on a mental/emotional level. Therapy is good for that, as is trying to find activities that you can do and that are fun.
     
  11. starfish

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    Sometimes I wonder if I have fibromyalgia. I have quite a few of the symtoms. One thing that causes a flare up for me is stress.

    A few months ago things got really bad. I was under ungodly stress at work, and the pain was so bad. Things got so bad I couldn't even shave in the mornings because my shoulders and elbows just hurt too bad. That picture posted above with the pain points. I had all of them.

    Then I had a vacation. I was worried about being able to travel with the pain. 2 days into the vacation and friend calls to check up on me. I was at the top of a mountain I had just hiked. I had no pain at all. That was when I realized I needed to make changes in my life.

    Fortunately I found a new job quickly and things are so much better. I still have some pain, but it is manageable.

    One thing I would suggest is be mindful of what is going on when the pain gets real bad. Try to eliminate those things.
     
  12. stephaniesbaby

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    I've been diagnosed with fibro since I was 16. I am now 26. I find that sometimes Motrin pills and the rub helps a little if taken together. I usually take 2 extra strength pills, get into a really hot bath with those salts(dont remember what they are called atm), and then a massage(if someone else is around) and then put the rub on, if the pain is in localized places. The Motrin rub helps a bunch because not only is it medication, but it also heats up and penetrates into the muscle and bone, and is specifically designed for all types of arthritic pain.. hope that helps a bit?