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  • 18 Year Old Living with Possible Fibromyalgia. Advice Greatly Appreciated.

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    Old 07-09-2008, 12:58 AM   #1
    Tracy-Anne
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    Exclamation 18 Year Old Living with Possible Fibromyalgia. Advice Greatly Appreciated.

    I'm 18 years old and I have been suffering with severe pain all over my body. I've had pain for about four years and it began with back pain that was thought to have come from a car accident I was in. The pain gradually became worse as I saw doctor after doctor and I was told I had bulging discs, but not enough to cause the pain I was experiencing. After seeing different types of doctors and plenty of hospital visits my parents and I came to the conclusion that this had not been caused by the car accident. The pain was so bad that I had to miss a year of school which in the end held me back from graduation. After years of dealing with this my pain has slowly gotten worse and now I suffer from severe back pain in which I can't sit or stand for more than 5 minutes, leg pain which makes walking difficult, painful cracking in my ankles, fingers, neck, back, and knees, pressure on the right side of my head, memory loss, blurred vision and tingling in arms and legs. The pain I have been suffering through these past years has been a mystery to every doctor I visit. I have been told I could have arthritis, lupus, or fibromyalgia but nothing can be pin-pointed. This has been so difficult for me because it affects my everyday life and the worst part is every doctor, my friends, and my family really don't understand how much I suffer. No matter how hard I try to explain the amount of pain I am in, they seem to think I exaggerate. I have gotten really good at hiding my pain, and just not talking about it, but sometimes it's obvious that something is wrong. It's getting to the point where I can't hide this anymore. st pray that some doctor will be able to do something for me. Does anyone else with fibromyalgia has these same symptoms or does anyone just have any suggestions? I appreciate the time anyone takes to read this. Thanks.

     
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    Old 07-09-2008, 05:49 AM   #2
    fibrohurts
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    Re: 18 Year Old Living with Possible Fibromyalgia. Advice Greatly Appreciated.

    Hi, Tracy-anne
    I'm so sorry you are going through this.
    It sounds like you may have fibro. Fibro is a hard thing to diagnose it took 7 years for me to get diagnosed.
    Fibro can be caused by several things, including trauma caused by car accidents. If fact, i think that's how mine started.
    You need to ask your doctor to refer you to a rheumatologist. Also, if you haven't had blood tests done yet, you need to have your ESR and ANA checked to help rule out other possibilities.
    If the the rheumy rules out arthritis and fibro. your next step should be to see a neurologist.
    I hope this helps. Just make sure you insist on seeing the Rheumatologist.
    Gentle hugs.

     
    Old 07-09-2008, 07:33 AM   #3
    aboncz
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    Re: 18 Year Old Living with Possible Fibromyalgia. Advice Greatly Appreciated.

    Hey Tracy-Anne,

    First of all, I'd like to say that I'm so so sorry that you're suffering from this. I know that me being sorry doesn't help your situation at all, but please know that I truly understand exactly what you've been going through. I'm almost 18 myself, and having excruciating pain every day caused me to miss a year of school as well, and dramatically changed my entire life. I know what it's like to not only feel so much physical pain, but also emotional pain because you're missing all of these high school years that are supposed to be so great.
    Fibro-hurts already suggested the things I was going to suggest, except that if you're up to it you might consider going to the mayo clinic or the cleveland clinic (if you haven't done these things already) and they will keep you for about a week or so and send you to all sorts of doctors until they find out what's wrong. Good luck with everything, and hang in there! Have faith in yourself and that you will do all of the things in life that you want to do; one of the things that has really helped me was to accept that my time frame in completing things in life is different than everyone else's, and that's OK.


    sending love your way,
    Allie

     
    Old 07-09-2008, 11:29 AM   #4
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    Re: 18 Year Old Living with Possible Fibromyalgia. Advice Greatly Appreciated.

    I too am 18 years old and have just been diagnosed with fibromyalgia. Although my pain didn't keep me from school for a long time like you i can completely understand your pain. I would struggle to get from classroom to classroom and some teachers would even allow me to leave early because they feared i'd get knocked over in the hallway. My pain is more directed in my legs but i get a lot of other pains too. I hope you find a diagnosis soon so they can get you on some good meds

     
    Old 07-09-2008, 10:41 PM   #5
    Tracy-Anne
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    Re: 18 Year Old Living with Possible Fibromyalgia. Advice Greatly Appreciated.

    Thanks so much for the advice. I have to get back to see my rheumatologist and get prescribed new medicine. I was on lyrica, but it never seemed to even touch the pain. What types of medicine are any of you on that help with pain?

     
    Old 07-10-2008, 06:18 AM   #6
    gorgee
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    Re: 18 Year Old Living with Possible Fibromyalgia. Advice Greatly Appreciated.

    Tracey-Anne, it sounds like you might have fibromyalgia, does your body feel like one big bruise? I was wondering if you have tested your body for the tender points? I am 31, and have battled migraines since I was a child, but I remember having a lot of pain as a child, and my mom saying they were growing pains. I played sports in high school, and I was always sore, sometimes so sore I thought about not playing anymore. Looking back, headaches, and migraines started running my life then, and continued through the years. The migraines/massive pain behind my left eye ball ran my life last summer, everyday. I felt guilty about having to treat with pain meds most everyday, but I had not choice. I could not live with the extreme pain and take care of the kids, they were 1 1/2 and 4. In September, my battle with real chronic body pain started, and I would not wish it on anybody. I feel so bad for you all that are 18 years old and going through this, and trying to find doctors to help and medications.

    It was amazing how pain spread, it was like migraines, jaw, teeth, face, neck, shoulders, back, muscles, bones, and joints. Along with finally having an answer, we fibromites usually have other illnesses, like tmj, myofascial pain syndrome, ibs, migraines etc. It is something everyday. My husband makes a joke of it, but it is true, it is nothing new, just everyday chronic pain.

    I have found that heat and cold packs help a lot. The other day it was 80, I was having a flare-up and I was wrapped in a heated throw. I go to bed with cold packs on my neck and left side of face. I have tried lyrica too, and I had to stop taking it due to the extreme swelling. It did help with the neurological pain in my arms, legs, and feet. I would like to try neurontin, or maybe lyrica again, I have read that it can help with trigeminal neuralgia. I need as much help as I can get.

    Unfortunately, narcotic pain medicine helps, but I wish there was something else we could take. I take vicoprofen, and it helps, it has codeine, and ibuprofen. Also, for my jaw, the tmjd, I am on a long acting pain medication, so I have pain control that lasts 8 or so hours. It was a decision I had to make, the vicoprofen was not enough, and I was taking too much ibuprofen, and waking up at 4 am crying in pain, so we moved to long acting. I have also gained weight, and I am trying to lose some. It is not easy when you exercise and it causes flare ups. Does any of this sound familiar? I think one of the biggest medications that have helped me with fibro is a muscle relaxant, flexeril, or diazepam. How are you sleeping, and what is your day typically like?

    I do not know what I would do if I was 18 and trying to figure out all this. I hope your family is 100% supportive. I cannot tell anybody how hard or excruciating it is to battle chronic pain. I wish you all the best of luck and all my thoughts. This is a wonderful place to talk, get it out, and ask questions.

    Kassandra

     
    Old 07-10-2008, 11:25 PM   #7
    Tracy-Anne
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    Re: 18 Year Old Living with Possible Fibromyalgia. Advice Greatly Appreciated.

    Almost everything you mentioned sounds exactly what I go through every day. I remember when my pain first started a few years ago and my docotor kept telling my parentd and I it was growing pains like you said. Things started to get worse, but every new docotor I saw could find nothing. But its funny you mention pain in your jaw because I have the same thing, but I have never thought it related to all of my other pain. I remember when I was younger I would get so nervous because it would hurt so bad. I also have suffered from migranes since I was in the 2nd grade which I never thought could possibly be related.
    As far as medicines go narcotics do help but they make me high as a kite and I can't function everyday on them. I recently got a job at Disney World which I absolutely love but all my pain is making work so extremely difficult.
    Sleep is also something doesn't come easy for me unless I take muscle relaxers like flexiril. I don't get much sleep. My parents are really supportive but sometimes its hard because when I wake up in the middle of the night hysterical from pain I tend to yell at them because they can't do anything for me. And its so upseting to them to see me in so much pain and not have a clue what they can do. My mom always tells me its the worst feeling not to be able to cure my pain.
    So I just have to take things day by day, which after reading your post, Im sure you can relate.

     
    Old 07-16-2008, 12:10 AM   #8
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    Re: 18 Year Old Living with Possible Fibromyalgia. Advice Greatly Appreciated.

    hi i know where you are coming from. I am 34 and have alot of pain. Most mornings i have bad pain in my back when i wake up. I also get pain in my sholders, knees, hands and fingers, feet, thighs.
    I don't get alot of support from my family they don't seem to understand what im going through. I can't do alot of exercise as if i walk too much my feet ache like crazy. My partner is very good and is there for me when i need him
    What u need to do is goi to a specialist and he will tell what u have, i went tot he Christchurch Public Hospital, i got a referual from my doctor.
    There are some days where i find it had to walk.
    Last Saturday nite i went out and danced when we left the club i could hardly walk i was in so much pain i was nearly in tears. Keep your head up things will get better.


    Ana

     
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