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  • 21 trying to live a normal life with fibromyalgia

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    Old 12-08-2002, 11:04 PM   #1
    mandas21
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    Red face 21 trying to live a normal life with fibromyalgia

    Hi, my name is Amanda. I am 21. I was diagnosed at the age of 17 with fibromyalgia. I am to the point of saying I CAN'T TAKE IT ANYMORE. I use to be the kid that was never home. Now I am always home and suffering in some sort of pain. The pain clinic doctor says I am a young girl and I should take it, the pain that is. Well you can only take so much. My parents are so fustrated with me. It's almost like they don't believe me anymore. The doctors think I am just a head case and I need attention. Give me a break I am an only child...I have enough attention to go around. The best part of it all is I can not take any NSAIDS or Ibuprofen/advil products (ETC.) Because I have had kidney problems and ulcers. I need to know what medications I can use. Also, I am alergic to codiene, IVP DYE, ultram, and dilaudid. Please someone help. I am 21 and can't live my life like this.

     
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    Old 12-08-2002, 11:50 PM   #2
    mookiemike
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    Dear Mandas......

    I understand your fear and frustration and the fact that you've found us is at least, a start.

    You are not alone...literally millions struggle with this condition whether they are aware of its name or the mis-diagnosed name they are told they have.

    You should have someone close who you trust to hear the truth whether you think they will believe you or not; if you can't find that at home seek it out at a Temple of your religious belief...speak to someone older or go online to find discussion groups or support groups in your area.

    Finally, try to work on a medication that will improve your outlook on life...slow things down a bit...try Wellbutrin or Lexapro which are mild antidepressants and are a start.

    If not, we are always here to listen and offer advice.
    Good luck,

    Michael

     
    Old 12-09-2002, 06:04 AM   #3
    mandas21
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    micheal...
    Thanks for the advice about anti-depressants. Unfortunately...they don't work for me. I have been on; paxil, elavil, celexa, norpormin, and a couple of sleeping medications like Ambian. I did see a psychiatrist, he said that Fibromyalgia is psychosamatic. To my mom and I. I saw a counselor who tried to help me, but all she wanted to talk about was my childhood and how horrible it was. I had a great childhood though. I know that I have this for sure because I have seen three specialist. The one who diagnosed me with it, but wouldn't treat me because I had been in a car accident about 6 months before and din't want to be involved in any lawsuits. The second was just too slow and not agressive enough, and the third was wierd. He wanted me to do things like coffee enimas. I tried accupuncture, which did no good. See the main problem I have with my FM is when something happens like surgery or an injury it seems to hurt me so much more than it would to any other "normal person"...that's what doctors say. They get frustrated saying that I am going to become addicted to pain killers. For instance, last summer I had an ankle stabilzation and we warned the doctor about my problems with pain. He kept me in the hospital for two days on Morphine, which doesn't work for me, but demoral does. I know my body, but he wouldn't listen to me. Then he sent me home on demoral. I re-injured the same ankle last week and he put a soft cast on it and gave me darvocet. They were working but yesterday (Sunday) it was hurting so bad I couldn't take it any more. So my dad took me to an after hours care and they gave me a shot of demoral and it took the pain away soooo quick. Unfortunately it only lasted from about 9pm until 2 and then I woke up takeing darvocet all night long being awake and nothing helped. So now I am TERRIBLE pain. I called first thing this morning and got an appointment with my foot doctor...but he is probably going to just say deal with it. Why should I have to be in pain when there's so many different medications out there? I think doctors just need to learn more about FM. Anyways that is my story. Amanda

     
    Old 12-09-2002, 08:28 AM   #4
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    .

    [This message has been edited by tolern (edited 08-23-2003).]

     
    Old 12-09-2002, 09:53 AM   #5
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    Amanda,

    I agree with both Micheal and Tolern on this.

    Finding support is very important and learning what works for you and what don't is also important. It is very frustrating when doctor's tell you it's all in your head, when your family &/or friends don't believe you and think you putting on an performance just for attention. I think we have better things to do then that. It takes enough energy to deal with fibromyalgia, not to mention other health problems.

    Try to remember that you know it's not in your head and hopefully family members will come to understand. Some who claim to be friends will never understand and will eventually show that they were never your friend to begin with. Those you can do without and sometimes it takes years to find out who they are. But don't give up on people for you will find diamonds in the rough who will be there for you always.

    I do hope the doctor will help you with your pain and not be negative to you.

    Chy


     
    Old 12-09-2002, 12:15 PM   #6
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    If you can travel, there is a Doctor Ross in North Carolina that sees patients with Fibromyalgia. My wife
    goes to see her. She is very thorough in diagnosis and prefers to use natural treatments.

    My wife used to have a problem walking 100 yards. She now walks in 5K races on a regular basis.

    Her name is Dr. Connie Ross.

    [This message has been edited by sunbird_owner (edited 12-11-2002).]

     
    Old 12-09-2002, 06:24 PM   #7
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    When I was 27 years old, a doctor told me to not run more than a hundred yards. That was about 24 years ago.... Now, I run nearly 20 miles a week.

    I cured myself of horrible muscle pains, urinary problems, and many other things with natural treatments. It took me many years to figure it out. My doctors could not help me with their drugs. After changing my diet, getting involved with herbal therapy, and finally removing my mercury-silver dental amalgams, I'm well today.

    It took many experiments for me to figure it out. Your problems may be different than mine, but I thought I would mention it. I feel it's important to look and see if there are toxins or allergens that may be causing you problems. Also try and see if changing to a healthy diet or different foods makes any difference.

     
    Old 12-09-2002, 07:49 PM   #8
    mandas21
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    Thank you all so much for your replies...the one thing that actually does make me feel somewhat better is doing aqua aerobics at my gym and then sitting in the warm whirl pool after. As soon as my leg gets better I will start that. Does anyone on here have other things wrong? I have Irritable Bowel Syndrome, Irritable Bladder Syndrom, Chronic Fatigue and have had Endrometriosis removed three times. Do you think that this is all associated with FM? Also I am facing surgery again for my other ankle, next summer. What is the pain medication that people with FM find most useful? My personal preference is demoral while in the hospital, morphine doesn't work for me...that's why they think I am a druggie...but it doesn't work for my dad or aunt either. What is the best thing to come home on. With the last surgery they sent me home on darvocet...I was in tears for a whole week because they didn't work. Any advice on that one?

     
    Old 12-10-2002, 06:52 PM   #9
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    You reminded me when I once went to a doctor about 24 years ago. He specialized in treating people with arthritis. After he gave me a shot in the ankle, he said for me to walk around the parking lot, and it should feel better. He said it like he really meant it.

    I felt no change. Nothing happened. I believe he said it had some cortisone in it. I was so disappointed.

    How many doctors understand that some of us may be poisoned (as from mercury for example)? Why is it so difficult for these medical people to understand?

     
    Old 12-10-2002, 10:16 PM   #10
    mandas21
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    rhody...i can't believe that he told you to walk around the parking lot. my foot doctor wouldn't give me cortisone...it makes the tendants in the ankle weaker he said. but he did give me vicodin...which isn't helping. i still went to school today with ice packs and propping my foot up on the seat in front of me. i think that the reason doctors don't understand about FM is because they aren't willing to take the time to learn. it's psychosamatic...that's what i hear...they can shove that where the sun doesn't shine, psychosamatic...hmmmm I can make my heart race and blood pressure rise because i am in so much pain...there are clear evidence...like knots and heat coming from my back and knees. doctors are so uneducated about FM, it ticks me off to no end and i could go on forever about it...but i am going to try and go to sleep now...my heating pad should be hot by now.
    Thanks for talking it feels good to be able to talk to others with FM and being able to share my frustrations.

     
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